Today was one of those now rare days when Daddy was somewhat lucid. He ate more food than he has in the last 3 days combined and drank several glasses of juice/Ensure/chocolate Milk. I made him biscuits, bacon, fried potatoes with onions, and gravy. All of that went into the blender and came out a rather pasty brown blob, but Daddy gobbled bit up along with two fried eggs.
After eating he wanted to talk about his business and how much he sold the land for. Where his money is and who’s watching the store. He’s very worried about the business all the workers and being sure no body cheats him and that everyone got paid. It seems running your own business never ends. I’m glad I’m just a working stiff. Now maybe all I will worry about is not getting fired or meeting my deadlines. Much less stress than having to always be meeting payroll.
Days like this are wonderful in that there are those passing moments when it’s Daddy not Lewy talking, and you think, “He’s getting better!’…but he’s not. Even in stage seven, Lewy has a stage 6 day now and then. After all the disappointing upturns in the past, I know that this one will only be fleeting then the aftermath is always a deeper downturn.
I am being better about wetting Lewy’s mouth and lips. But I’m being more like I think a nursing home would be by giving him his “meds” when he probably doesn’t need them, just to give myself a break from the constant babbling and questioning that goes on while Lewy is awake. I’m becoming a church mouse. No noise! No noise!!
Lewy does not know what decade it is. He does not know where he lives. He thinks we are plotting to make him go somewhere else. It must be frightening to not know where you are or if you are going to be tossed out any minute. Lewy tries to bargain with us about the worth of the work he does around here. I’m not positively clear whether he is referring to when he really did put in a hard days work here every day or if in his dreams he’s working hard…probably both. He figures he’s earned his keep because of his sweat contribution.
No doubt he has.
Tomorrow the Hospice ladies return, Maybe the suction will come off the right foot.
2 comments:
Stella said...
Hold that thought about the suction coming off. He will have more freedom... more freedom to run his business. I'm sure the extra income will be helpful.
old friend said...
I'm out here...thinking of you,Pauline...no ringy dingy's!!!
1.2 Pictures
Hubbie here.
I haven’t written much lately. You may have noticed that I tend toward the less serious side and lately things have not been particularly lighthearted. Today has been about the same, some good some bad, nothing funny…………except to Lewy. For some reason my conversations with Lewy of late often end with him laughing. I don’t know why he is laughing. Heck, at least half of the time I have no idea what we are talking about. The other half of the time I have a vague idea of the topic but I’m puzzled by the words. He still talks about the other people. He still wants to get out of bed. Basically what you and I would talk about if we were confined to bed and strange people kept coming by.
There does seem to be a lot of business going on. Pauline and I are often urged to watch over the workers and to let Lewy know when we will be gone so that he can keep an eye on them. I don’t worry about them so much. I mean really, they are imaginary so anything they steal is imaginary. If they start stealing real stuff, then I’ll be pissed.
We have talked here before about “relative age”; childhood age as it equates to how we act when we are ………”up there”………”senior”………..”elderly”…………you know…………….old. It is an easy comparison to make. At what age did you learn to walk? At what age did you learn to talk? At what age did you stop wetting the bed? At what age did you feed yourself? At what age did the drywall guys start working over your bed? At what age did they install the elevator in your kitchen?
I think we can add another question to the list; At what age did your sentences start making sense? Of course the relative age question is the opposite; At what age did your sentences stop making sense? Pauline has shared some of the conversations with Lewy. He hasn’t made it to Crazy Aunt Tom’s level yet but he has offered up some interesting observations.
“We got to paddle as we go.”
“Paddle as we go?”
“Yeah. We got to keep our paddle feet moving.” (Pauline says that this means to move your car in Flintstone fashion.)
“I’ve ordered seventy thousand dollars worth of dogs.” (We love dogs but….Come on!!)
“Eating puts me in danger of the highway department.” (Don’t eat and drive.)
But then, was it not President Bush that said……………………..
“I'm honored to shake the hand of a brave Iraqi citizen who had his hand cut off.” (See that way the Iraqi citizen doesn’t even have to be there. Makes for an interesting visual doesn’t it. I mean, would you shake the hand like there was a person attached or would you wave it in the air?.........Maybe do it like a martini shaker.........Hey………….Don’t look at me that way,……………. it was the President’s idea.)
Of course none of the above holds a candle to Crazy Aunt Tom’s declaration that……….
“I can’t use this phone. It has the wrong language on it.” (Our phone was just one of the reasons that she refused to live with us when Lewy’s Twin Sister came to live in her head.)
All of us say stupid things. Some of us say smart things. So, not having much place else to go with this post let me offer you a few of my favorite quotations.
"You can safely assume that you've created God in your own image, when it turns out that God hates all the same people you do."--Anne Lamott
It needs to be stated again and again that the fundamental job of the president is not to protect the people of America, but to protect their constitution. – Andrew Sullivan
As societies grow decadent, the language grows decadent, too. Words are used to disguise, not to illuminate, action: you liberate a city by destroying it. Words are to confuse, so that at election time people will solemnly vote against their own interests. -Gore Vidal
"There are many in America today who have little sympathy with those we torture and torment. They are our enemies, they say. They would do worse to us if the situation was reversed. Maybe so. But those young men and women who we have turned into torturers and inquisitors, they were soldiers once. What are they now?" - Jay Elias, Daily Kos
Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover. - Mark Twain
Tell me, and I will forget. Show me, and I may remember. Involve me, and I will understand.Confucius
The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function. - F. Scott Fitzgerald
Nearly all men can stand adversity, but if you want to test a man’s character, give him power.Abraham Lincoln
If you would not be forgotten as soon as you are dead, either write something worth reading or do things worth writing. - Benjamin Franklin (1706-90)
Women and cats will do as they please, and men and dogs should relax and get used to the idea.-Robert A. Heinlein
Try not. Do. Or do not. There is no try. -Yoda
Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes. - unknown
It’s only seems kinky the first time. – Bumper Sticker
And this one from a book that I read several years ago but I lost. All I have is a copy of this passage. If you know the piece please let me know. I would love to give proper credit.
“Ah,” Tagore said, raising his eyebrows. “It is magic you wish to perform.”
“Your kind of magic.”
The old man nodded. “Come’” he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock of the ground. “If this rock were made to disappear – not hide, but disappear completely, never to exist in the form of a rock again – would you consider such an act to be magic?”
Justin looked the rock. “Yes,” he said.
“Very well.” Carefully he placed the rock in the middle of the stream.
“What did you do that for?”
“It is the magic you requested,” Tagore said. “I have placed the rock in the water. You see it now but in a century the rock will be gone, disappeared forever. The flow of the water will have worn it to nothing.”
“I get it.” said Justin, disappointed. “There’s no magic.”
“You are wrong, my son,” Tagore said quietly. “It is all magic.”
As for the most purposeful, most touching, most beautiful collection of words I have ever read please see Stella’s reply to Pauline printed in the 3-27 post, called “Letters”. I kneel in your presence Stella. You are an Angel. Capital “A” intended.
5 comments:
kddove said...
Grandmaster, Warren Murphy and Molly Cochran
Page 75
"Your kind of magic." The old man nodded. "Come," he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock ...
Stella said...
As an adolescent, I kept a scrap book of sayings by important people. I didn't understand half of what they meant but it sounded important. Your entry of today brings that back to my mind. Oh, I wish I had that book. Your words about my thoughts to Pauline are too kind. Pauline has helped me more than either of you will ever know.
Hubbie said...
kddove, I am VERY IMPRESSED. I did not expect an answer but the minute I saw the title I knew you were correct.
Stella, I kept the same information. I hand copied it into a notebook. To this day I have to read from paper, I can't read more than one page from a monitor. But the notebook I wish I had not lost is the one where I chronicled the graffiti in the Undergraduate Library. there was some good stuff there.
But my dear Stella, my words were in no way too kind. Help is a two way street. Pauline's writing help her, and you, and me, and hopefully, many other people. But your words in that letter....Oh my god......Stella they were perfect. Bless you my dear lady. You and Freddie will stand beside your God. I have no doubt of that. No doubt at all.
kddove said...
google is amazing. i put in "tagore, justin, magic" and it went there...
i wish i had all that in my head!!!!
I haven’t written much lately. You may have noticed that I tend toward the less serious side and lately things have not been particularly lighthearted. Today has been about the same, some good some bad, nothing funny…………except to Lewy. For some reason my conversations with Lewy of late often end with him laughing. I don’t know why he is laughing. Heck, at least half of the time I have no idea what we are talking about. The other half of the time I have a vague idea of the topic but I’m puzzled by the words. He still talks about the other people. He still wants to get out of bed. Basically what you and I would talk about if we were confined to bed and strange people kept coming by.
There does seem to be a lot of business going on. Pauline and I are often urged to watch over the workers and to let Lewy know when we will be gone so that he can keep an eye on them. I don’t worry about them so much. I mean really, they are imaginary so anything they steal is imaginary. If they start stealing real stuff, then I’ll be pissed.
We have talked here before about “relative age”; childhood age as it equates to how we act when we are ………”up there”………”senior”………..”elderly”…………you know…………….old. It is an easy comparison to make. At what age did you learn to walk? At what age did you learn to talk? At what age did you stop wetting the bed? At what age did you feed yourself? At what age did the drywall guys start working over your bed? At what age did they install the elevator in your kitchen?
I think we can add another question to the list; At what age did your sentences start making sense? Of course the relative age question is the opposite; At what age did your sentences stop making sense? Pauline has shared some of the conversations with Lewy. He hasn’t made it to Crazy Aunt Tom’s level yet but he has offered up some interesting observations.
“We got to paddle as we go.”
“Paddle as we go?”
“Yeah. We got to keep our paddle feet moving.” (Pauline says that this means to move your car in Flintstone fashion.)
“I’ve ordered seventy thousand dollars worth of dogs.” (We love dogs but….Come on!!)
“Eating puts me in danger of the highway department.” (Don’t eat and drive.)
But then, was it not President Bush that said……………………..
“I'm honored to shake the hand of a brave Iraqi citizen who had his hand cut off.” (See that way the Iraqi citizen doesn’t even have to be there. Makes for an interesting visual doesn’t it. I mean, would you shake the hand like there was a person attached or would you wave it in the air?.........Maybe do it like a martini shaker.........Hey………….Don’t look at me that way,……………. it was the President’s idea.)
Of course none of the above holds a candle to Crazy Aunt Tom’s declaration that……….
“I can’t use this phone. It has the wrong language on it.” (Our phone was just one of the reasons that she refused to live with us when Lewy’s Twin Sister came to live in her head.)
All of us say stupid things. Some of us say smart things. So, not having much place else to go with this post let me offer you a few of my favorite quotations.
"You can safely assume that you've created God in your own image, when it turns out that God hates all the same people you do."--Anne Lamott
It needs to be stated again and again that the fundamental job of the president is not to protect the people of America, but to protect their constitution. – Andrew Sullivan
As societies grow decadent, the language grows decadent, too. Words are used to disguise, not to illuminate, action: you liberate a city by destroying it. Words are to confuse, so that at election time people will solemnly vote against their own interests. -Gore Vidal
"There are many in America today who have little sympathy with those we torture and torment. They are our enemies, they say. They would do worse to us if the situation was reversed. Maybe so. But those young men and women who we have turned into torturers and inquisitors, they were soldiers once. What are they now?" - Jay Elias, Daily Kos
Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover. - Mark Twain
Tell me, and I will forget. Show me, and I may remember. Involve me, and I will understand.Confucius
The test of a first-rate intelligence is the ability to hold two opposed ideas in the mind at the same time, and still retain the ability to function. - F. Scott Fitzgerald
Nearly all men can stand adversity, but if you want to test a man’s character, give him power.Abraham Lincoln
If you would not be forgotten as soon as you are dead, either write something worth reading or do things worth writing. - Benjamin Franklin (1706-90)
Women and cats will do as they please, and men and dogs should relax and get used to the idea.-Robert A. Heinlein
Try not. Do. Or do not. There is no try. -Yoda
Before you criticize someone, you should walk a mile in their shoes. That way, when you criticize them, you're a mile away and you have their shoes. - unknown
It’s only seems kinky the first time. – Bumper Sticker
And this one from a book that I read several years ago but I lost. All I have is a copy of this passage. If you know the piece please let me know. I would love to give proper credit.
“Ah,” Tagore said, raising his eyebrows. “It is magic you wish to perform.”
“Your kind of magic.”
The old man nodded. “Come’” he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock of the ground. “If this rock were made to disappear – not hide, but disappear completely, never to exist in the form of a rock again – would you consider such an act to be magic?”
Justin looked the rock. “Yes,” he said.
“Very well.” Carefully he placed the rock in the middle of the stream.
“What did you do that for?”
“It is the magic you requested,” Tagore said. “I have placed the rock in the water. You see it now but in a century the rock will be gone, disappeared forever. The flow of the water will have worn it to nothing.”
“I get it.” said Justin, disappointed. “There’s no magic.”
“You are wrong, my son,” Tagore said quietly. “It is all magic.”
As for the most purposeful, most touching, most beautiful collection of words I have ever read please see Stella’s reply to Pauline printed in the 3-27 post, called “Letters”. I kneel in your presence Stella. You are an Angel. Capital “A” intended.
5 comments:
kddove said...
Grandmaster, Warren Murphy and Molly Cochran
Page 75
"Your kind of magic." The old man nodded. "Come," he said. He led Justin to a small stream near the thicket of rhododendrons and picked a hand-sized rock ...
Stella said...
As an adolescent, I kept a scrap book of sayings by important people. I didn't understand half of what they meant but it sounded important. Your entry of today brings that back to my mind. Oh, I wish I had that book. Your words about my thoughts to Pauline are too kind. Pauline has helped me more than either of you will ever know.
Hubbie said...
kddove, I am VERY IMPRESSED. I did not expect an answer but the minute I saw the title I knew you were correct.
Stella, I kept the same information. I hand copied it into a notebook. To this day I have to read from paper, I can't read more than one page from a monitor. But the notebook I wish I had not lost is the one where I chronicled the graffiti in the Undergraduate Library. there was some good stuff there.
But my dear Stella, my words were in no way too kind. Help is a two way street. Pauline's writing help her, and you, and me, and hopefully, many other people. But your words in that letter....Oh my god......Stella they were perfect. Bless you my dear lady. You and Freddie will stand beside your God. I have no doubt of that. No doubt at all.
kddove said...
google is amazing. i put in "tagore, justin, magic" and it went there...
i wish i had all that in my head!!!!
Life Line
Lewy seems to have taken up pretty much permanent residence in Daddy’s head. Even when he talks (or tries to) about something real, he can’t formulate enough words to make it understandable. The nouns always seem to be missing.
The wound nurse came by and redressed Daddy’s feet. We were able to remove the suction on the left foot and maybe we will be able to remove the suction on the right foot Friday. I sure hope so. It’s difficult to change the dressings, it hurts Daddy when we do it, the pump is noisy, and it restricts Daddy from being able to move around.
She also thought we might try to sit him upright for a bit and see if he thinks he wants to try to stand up. It would be so nice, if I could just get him out of the bed into a wheel chair. It is amazing, I never thought of a wheel chair as being a “freeing” object before. (I’m slow, obviously. Or perhaps incredibly lucky) I’ve never had to think of wheelchairs that way before. I’ve always thought of the restrictions one has to deal with when they are confined to a wheelchair. Never again will I look at a person in a wheel chair and feel sorry for them. I will look at them and know how grateful they are to be able to get into one.
Daddy’s old girlfriend June came by to visit yesterday. She happened to arrive just as a friend of mine arrived, so my friend and I sat outside in the warm spring sunshine while June, a retired nurse, checked in on Daddy.
It was nice to sit outside and chat without worrying about what was going on inside with Lewy. Unfortunately, it was Lewy that greeted June, so she talked to him a while, reminded him of who she was, but reported to my friend and me that she didn’t think he ever realized who she was.
Too bad. He had been asking about her by name a few days before. I wish he on some level realized it was June…….Perhaps he did, now that I think of it……The covers were completely re-layered which no doubt means he had removed them for her. That will teach her to come visit!
Lewy on the other hand doesn’t seem to care who he gets nekked in front of. He grabs those covers one by one and flings each of them with the authority of Gypsy Rose Lee slinging off her gloves. I keep expecting to hear “The Stripper”.
Occasionally, we get a good leg lift to emphasize the toss.
This blanket tossing is of course what the anti anxiety meds are for. So I give him some anti anxiety meds. A bit later I give him pain meds. Even after the drugs he still wants to twist up that cigar, pull on the bed clothes, and cling to the bed rails. At the prescribed intervals I give him his meds that do eventually calm him down into a deep sleep.
Now, as I go by his bed I take an eye dropper to wet his lips every few minutes. He breathes through his open mouth so even in a deep sleep, his mouth responds, sort of a pucker, to the drops and “asks” for more.
I play the old Swing Kings very softly off the TV CD channel, no talk no commercials. It seems to ease him a bit. At least his generation had good music. Imagine the children of today’s kids playing hip hop through a boom box to settle Granny down…Kinda makes me smile just to think about it….Progressive Rock for me, with a good dose of Heavy Metal just for kicks, please. And some Buffett. Gotta have some Buffett.
I was so looking forward to this morning. It was an unusual nexus of events that meant I could sleep late. Oh yes, sleep until 8 AM maybe….
2:30 AM. Daddy is coughing up a loogey. I hear him spit it. I ain’t gettin’ up.
3:12 AM Daddy is gurgling very loudly, again I hear the propulsion of goo.
3:58 AM more wheezing and propelling.
This went on all morning. I finally gave up and tried to mentally prepare myself for the mess there would be to clean. I knew from experience to check the glare on the hardwood floor; and Lo and Behold! A goo mine-field. The decision to not get up earlier was probably a mistake. Re-wetting phlegm for removal is disgusting. I gagged for a long while. I manage in my old age to not vomit, but I can’t stop the repeated gagging.
After I got the floor cleaned I approached the bed. There were clumps of the stickiest ……oh it was awful….just awful….So much for my much anticipated morning sleep in.
After I cleaned the mess up from Lewy’s shoulders, face, and bed, I went to the kitchen to crush his pills and make his breakfast of pureed sweet potatoes and chicken with rice, with Ensure on the side.
By the time I got the food set down on the bed side tray Lewy had fallen fast…. and very deeply…. asleep.
Down to the bottom,
Hello
Is there anybody else here?
It's cold and I'm so lonely,
Hello!
Is there anybody else here?
Hello (Hello, Hello, Hello)
Won't you throw me down a Life Line?
I'm so afraid of darkness,
And down here it's just like night time.
Oobelie, Ooobely, Oogolie,
Oogolie, Oohs..Are all around me.
Hello!
Will you please send down a Life Line?
Down,
And there isn't any hope for me,
Unless this dream which seems so real,
Is just a fantasy.
Life Line
by Harry Nilsson
Thank you Harry…
.
Listen: http://www.youtube.com/watch?v=G1w1WLUDPUM
3 comments:
old friend said...
Now I know you would want some Leon in the mix!
Stella said...
Oh, my dear, the generational gap is showing but what a trip for this granny. I'll join Mr Lewy with his soft music but I got a sad chuckle for the little guy at the rim.
Stella said...
His feet are improving???!!!! Good for you, Mr Lewy!
The wound nurse came by and redressed Daddy’s feet. We were able to remove the suction on the left foot and maybe we will be able to remove the suction on the right foot Friday. I sure hope so. It’s difficult to change the dressings, it hurts Daddy when we do it, the pump is noisy, and it restricts Daddy from being able to move around.
She also thought we might try to sit him upright for a bit and see if he thinks he wants to try to stand up. It would be so nice, if I could just get him out of the bed into a wheel chair. It is amazing, I never thought of a wheel chair as being a “freeing” object before. (I’m slow, obviously. Or perhaps incredibly lucky) I’ve never had to think of wheelchairs that way before. I’ve always thought of the restrictions one has to deal with when they are confined to a wheelchair. Never again will I look at a person in a wheel chair and feel sorry for them. I will look at them and know how grateful they are to be able to get into one.
Daddy’s old girlfriend June came by to visit yesterday. She happened to arrive just as a friend of mine arrived, so my friend and I sat outside in the warm spring sunshine while June, a retired nurse, checked in on Daddy.
It was nice to sit outside and chat without worrying about what was going on inside with Lewy. Unfortunately, it was Lewy that greeted June, so she talked to him a while, reminded him of who she was, but reported to my friend and me that she didn’t think he ever realized who she was.
Too bad. He had been asking about her by name a few days before. I wish he on some level realized it was June…….Perhaps he did, now that I think of it……The covers were completely re-layered which no doubt means he had removed them for her. That will teach her to come visit!
Lewy on the other hand doesn’t seem to care who he gets nekked in front of. He grabs those covers one by one and flings each of them with the authority of Gypsy Rose Lee slinging off her gloves. I keep expecting to hear “The Stripper”.
Occasionally, we get a good leg lift to emphasize the toss.
This blanket tossing is of course what the anti anxiety meds are for. So I give him some anti anxiety meds. A bit later I give him pain meds. Even after the drugs he still wants to twist up that cigar, pull on the bed clothes, and cling to the bed rails. At the prescribed intervals I give him his meds that do eventually calm him down into a deep sleep.
Now, as I go by his bed I take an eye dropper to wet his lips every few minutes. He breathes through his open mouth so even in a deep sleep, his mouth responds, sort of a pucker, to the drops and “asks” for more.
I play the old Swing Kings very softly off the TV CD channel, no talk no commercials. It seems to ease him a bit. At least his generation had good music. Imagine the children of today’s kids playing hip hop through a boom box to settle Granny down…Kinda makes me smile just to think about it….Progressive Rock for me, with a good dose of Heavy Metal just for kicks, please. And some Buffett. Gotta have some Buffett.
I was so looking forward to this morning. It was an unusual nexus of events that meant I could sleep late. Oh yes, sleep until 8 AM maybe….
2:30 AM. Daddy is coughing up a loogey. I hear him spit it. I ain’t gettin’ up.
3:12 AM Daddy is gurgling very loudly, again I hear the propulsion of goo.
3:58 AM more wheezing and propelling.
This went on all morning. I finally gave up and tried to mentally prepare myself for the mess there would be to clean. I knew from experience to check the glare on the hardwood floor; and Lo and Behold! A goo mine-field. The decision to not get up earlier was probably a mistake. Re-wetting phlegm for removal is disgusting. I gagged for a long while. I manage in my old age to not vomit, but I can’t stop the repeated gagging.
After I got the floor cleaned I approached the bed. There were clumps of the stickiest ……oh it was awful….just awful….So much for my much anticipated morning sleep in.
After I cleaned the mess up from Lewy’s shoulders, face, and bed, I went to the kitchen to crush his pills and make his breakfast of pureed sweet potatoes and chicken with rice, with Ensure on the side.
By the time I got the food set down on the bed side tray Lewy had fallen fast…. and very deeply…. asleep.
Down to the bottom,
Hello
Is there anybody else here?
It's cold and I'm so lonely,
Hello!
Is there anybody else here?
Hello (Hello, Hello, Hello)
Won't you throw me down a Life Line?
I'm so afraid of darkness,
And down here it's just like night time.
Oobelie, Ooobely, Oogolie,
Oogolie, Oohs..Are all around me.
Hello!
Will you please send down a Life Line?
Down,
And there isn't any hope for me,
Unless this dream which seems so real,
Is just a fantasy.
Life Line
by Harry Nilsson
Thank you Harry…
.
Listen: http://www.youtube.com/watch?v=G1w1WLUDPUM
3 comments:
old friend said...
Now I know you would want some Leon in the mix!
Stella said...
Oh, my dear, the generational gap is showing but what a trip for this granny. I'll join Mr Lewy with his soft music but I got a sad chuckle for the little guy at the rim.
Stella said...
His feet are improving???!!!! Good for you, Mr Lewy!
The Last Stages of Life
I found this while Googling for some information on what to expect for Daddy's final days. It is a bit morbid, but I feel I need to know what to expect. I've never been exposed to the day by day hour by hour observance of death.
I thought I would share this article from a Hospice group in Hawaii.
The Last Stages of Life
The last stages of life can be very stressful for the dying person and those caring for him/her. You will observe changes that may be upsetting and unfamiliar. Learning about the dying process will help. Many physical changes occur during the process of dying that affect the emotional, social, and spiritual aspects of a person’s life.
There are some signs and symptoms of dying that are observable, although not everyone follows a predictable sequence of events or stages.
Health professionals speak of “dying trajectories” that suggest how persons with specific diseases will die. For example, those with a terminal illness, such as advanced cancer, will show a steady decline toward death. Those with serious chronic illnesses may have peaks and valleys that sometimes give the impression of recovery.
Remember that each person’s death is unique.It is helpful to understand the common symptoms experienced in people who are dying. You may observe none, some, or all of these symptoms in the dying erson’s last days and hours on earth. You will also learn things to do that can help ease physical pain and suffering.
Withdrawal from the External World
As the end of life approaches, there is a feeling of detachment from the physical world and a loss of interest in things formerly found pleasurable. There is a tendency to sleep more. There is less desire to talk. This is the beginning of letting go of life and preparing for death.
Days or hours before death, the dying person becomes less and less responsive to voice and touch and may not awaken. Sometimes, quite unexpectedly, the person may appear well and even look as if he/she is going to recover.
The person may be alert and talkative. This does not mean that there will be recovery; the person is still dying. Use this as a “window of opportunity” to say what you need to say and have closure.
What you can do:• Always speak gently, and identify yourself before speaking.• Use gentle touch and provide reassurance.• Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence. • Remember that you are supporting the person to “let go.”
Visions and Hallucinations
Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see. This can be unsettling, and loved ones may not know how to respond.
What you can do:• Do not judge or be critical of what is happening. Just be as silent and supportive as possible. • Refrain from discounting the experience and orienting the dying person to “reality.” This is their reality. Most often, these “visions” are reassuring, and they comfort the dying. Rarely do they upset the dying person.• It is important to differentiate visions from hallucinations or “bad dreams” that may be caused by medications or metabolic changes. While visions of loved ones are generally comforting, “bad dreams” may frighten the dying person. Alert the doctor or nurse about “bad dreams.” An adjustment in medication may correct this.
Loss of Appetite
As death nears, the dying person may lose interest in food and drink. The ability to swallow becomes impaired. Loss of appetite and reduced intake are normal parts of dying. In the early stages of dying, the dying person may prefer only soft foods and liquids.
In the very last stages of life, however, they may not want any food or drink. A dying person may want to suck on ice chips or take a small amount of liquid, just to wet and freshen the mouth, which can become very dry. In the last stages of dying, forcing food when the body says “no” may be harmful or painful to the dying person. Many dying persons will exhibit the “clenched jaw” sign as a way of saying “no.” Forcing fluid may cause choking, or the dying person may draw liquid into the lungs, making matters worse.
It is hard for most people to respect the dying person’slack of appetite. That’s because many of us equate foodwith caring. Family members may feel that withholdingnutrition is cruel or neglectful. They may worry that theyare “killing” their loved one.
It is important to remember that as the physical body is dying, the vital organs are shutting down, and nourishment is no longer required to keep them functioning. This is the wisdom of dying, and the body knows exactly what to do.
What you can do:• Refrain from giving liquids or food unless requested.• Wet the lips and mouth with a small amount ofwater, ice chips, or a sponge-tipped applicatordipped in water.• Protect lips from dryness with a protective lip balm.• Continue to be a caring and loving presence.
Now, I have no choice but to see with your eyes,so I am not alone, so you are not alone.–Yannis Ritsos
Change in Bowel and Bladder Functions
The two major concerns are constipation and incontinence (loss of control over bowel and bladder functions). Constipation may be caused by lack of mobility, pain medication, and decreased fluid intake. If left untreated, fecal impaction may occur and can become uncomfortable. Laxatives are generally needed to keep the bowels clean.
Incontinence, or loss of bowel/bladder control, is likely to be distressing to the dying person and those in attendance. In the early stages, “accidents” can occur. Asdeath nears, the muscles in these areas relax further andcontents are released. This is normal. Urine is highlyconcentrated and sparse and may look tea-colored.
Sometimes a urinary catheter is inserted, or the dying person may wear “diapers” or briefs. This will help keep linen clean (changing linen may be more disturbing to the dying person than the catheter or the diapers).
What you can do:• Keep affected areas clean and dry to avoid rashes or bedsores.• Watch for signs of constipation and incontinence, and help loved ones report this to the physician or nurse.• Talk to the doctor or nurse about the advantages of reducing food and fluid in the last stages of dying.
Confusion, Restlessness, and Agitation
Restlessness and agitation are common. These symptoms may be caused by reduced oxygen to the brain, metabolic changes, dehydration, and pain medications.
“Terminal delirium” is a condition that may be seen when the person is very close to death, marked by extreme restlessness and agitation. Although it may look distressing, this condition is not considered to be painful.
There are medications available to control symptoms. Be aware there may be unfinished business. Dying persons may try to hold on until they feel a sense of security and completion. Picking, pulling, and fidgeting behaviors may also be seen. This can result from medications, metabolic changes, or decreased oxygen to the brain.
What you can do:• Never startle the dying with bright lights, harsh tones, or abrupt movement.• Always identify yourself. Even if the dying personknows you well, he/she might not recognize you atthis time.• Use a gentle voice and reassuring touch.• With mindful awareness, be sensitive to any cues that might signal that there is something the person wants to resolve before he/she can let go. Offer support.• Consider the use of light massage and soothing music.• Ask the doctor if there are any medications that might help relieve the agitation.
Changes in Breathing, Congestion in Lungs orThroat
You may observe that breathing is shallow and quickened, or slow and labored. The person may make gurgling sounds, sometimes referred to as the “death rattle.” These sounds are due to the pooling of secretions and an inability to cough them up. The air passing through the mucus causes this sound.
The breathing pattern most disturbing to witnesses, called Cheyne-Stokes breathing, is marked by periods of no breathing at all (up to 45 seconds), followed by deeper and more frequent respirations. These respirations are common and result from decreased oxygen supply to the vital organs and a build-up of waste products in the body.
This condition is not uncomfortable or painful for the dying person, although it may be unsettling to observe. The “death rattle” or Cheyne-Stokes breathing indicate that death is near.
What you can do:• Do not panic. This can increase any fear that may already be present for the dying person.• Raise the head of the bed (mechanically or with pillows) to help breathing.• If secretions are pooling in the mouth, turn the head and position the body so that gravity can drain them. Suctioning rarely helps and is not recommended.• If appropriate, wipe out the mouth with a soft, moist cloth to cleanse excess secretions.• Speak gently and lovingly, and use gentle reassuringtouch to ease fear.• Alert the doctor or nurse if breathing is especially labored or if you notice the “death rattle” and Cheyne-Stokes breathing.
Change in Skin Temperature and Color
As the body dies, the blood moves away from the extremities toward the vital organs. You may notice that while the extremities are cool, the abdomen is warm. You may notice changes in body temperature.
The dying person may feel hot one minute and cold the next. As death approaches, there may be high fever. You also may see purplish-bluish blotches and mottling on the legs, arms or on the underside of the body where blood may be collecting. As death nears, the body may appear yellowish or waxen in color.
What you can do:• Try to keep the person as comfortable as possible.• Use a damp, cool washcloth to cool a person who feels too hot (be alert to signs such as kicking off the blankets).• Cover the dying person with a blanket if he/she feels too cold. Don’t use electric blankets or heating pads, as these may burn the skin.• Alert the doctor or nurse if you notice changes in skin color. This may be a sign that death is near.• Using a fan to circulate air may make the person more comfortable.
Tips for Caregivers
You can be a caring presence throughout the dying process. Your presence for the dying person and his/herloved ones indicates loving kindness, compassion, andwillingness to provide practical help.
Learn. Learn what you can about the dying person’s illness and the dying process so you can provide comfort and assurance.
Realize your limitations. No one is perfect. No one can do everything. Get help when you need it. Take a break when you need one. Encourage the dying person and his/her loved ones to call the doctor or nurse with questions.
Managing Physical Pain
Most physical pain can be controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled.
Pain is real. Always believe a person who says he/she has pain. Remember that each person is an individual and perceptions of pain differ.
Talking to the doctor. People should expect their doctors and nurses to ask these questions about pain:• Do you have pain?• Where is it? What does it feel like: dull, stabbing, throbbing, etc.?• How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being the worst pain you’ve ever had.• What makes the pain better or worse? The answers to these questions will help the doctor prescribe the right medicine in the right amount. Before the conversation is over, make sure that the dying person and his/her caregivers understand:• What may be causing the pain• The recommended treatment• The possible side effects• What to do if there are questions or concerns
True love is not a feeling by which we are overwhelmed. It is a committed, thoughtful decision.– M. Scott Peck
Hospice Death
Hospice care can be given in the home, nursing home, hospital, or residential facility. There are 7 hospice programs in Hawaii. Hospice care is available on every island except Niihau and Lanai. On Oahu, there are 3 dedicated hospice facilities, two affiliated with St. Francis Hospice (The Sister Maureen Kelleher Center and the Maurice J. Sullivan Family Hospice Center), and the Hospice Hawaii Kailua home. Several hospitals across the state work with local hospices to provide hospice carein the hospital. In the hospice philosophy, death is held as a natural event, not a medical event. “Care” not “cure” is the goal.
When hospice is provided in the home, family members become the primary caregivers. When possible, at least two family members or loved ones should share the responsibilities of caregiving. Hospice staff visit the home on a regular schedule. They are on-call (available round-the-clock) to provide support to the entire family. The hospice interdisciplinary staff includes doctors, registered nurses, social workers, chaplains, home health aides, and volunteers so that the dying may receive holistic, comprehensive care. Hospice nurses and doctors specialize in easing pain and suffering.
Physical and occupational therapists also can assistpatients to be as mobile and self-sufficient as possible.Music therapy, art therapy, counseling, and othertherapies are also available. Hospice believes that emotional and spiritual pain are just as real. Counselors, including clergy, are available to assist family members as well as patients.
You can give your whole attention only when you care, which means that you really love.– J. Krishnamurti
Saying GoodbyePersons who are dying often want “permission to die” from those they love. Often, they want to be assured of five things:• Things they were once responsible for will be taken care of.• The survivors will survive without them.• All is forgiven.• Their life had meaning.• They will be remembered.
Saying good-bye is not easy. Yet, it is important for the dying person and his/her loved ones to do so. Take advantage of opportunities when the person is awake and communicative to facilitate the “saying good-bye” process.
If the dying person is not lucid, or in a coma, remember that hearing is the last sense to leave. Assume everything you say can be heard and understood, even if the person is not responsive. Never speak about the dying person as if he/she was not in the room.
Some people feel comfortable lying in bed next to theirloved one as they say their parting words. Others may want to simply hold hands. If music, chanting, or prayer is used to assist the dying, let it be comforting and familiar,making way for gentle passage. The dying person’s body language will let you know if these sounds are welcome and soothing.
Even with all the preparation and knowledge that death is coming, the moment of death is not easy to see. Even those people who are closest to the dying person may choose to be absent. The decision to be present at the moment of death depends on many things. Do not judge others if they choose not to be present at the moment of death.
Being Present at the Moment of Death
It is not uncommon for the dying person to wait to die until loved ones have left the room. Make sure you allow for this. Sometimes, if a person seems to be holding on, you may simply say, “I’m going to leave the room for awhile. I love you.”
In some cultures, specific prayers, sutras, or other rituals,may ease the passage to death. These may be comforting both to the dying person and to his/her family. Ask your clergy person for assistance.
Work of sight is done.Now do heart work on the pictures within you.–Rainer Maria Rilke
Home About Answers ToolsSpeakers Bureau Grief & Bereavement LinksPartners Supporters Contact Copyright © 2005 Kokua MauSite by Wet Sand
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Kokua Mau Contact Information:P.O. Box 62155 Honolulu HI 96839
Tollfree: (800) 474-2113Phone: (808) 585-9977Fax:(808) 988-4869
info@kokuamau.org
Original article may be found at: http://www.kokuamau.org/laststages/index.htm
1 comments:
oldfriend said...
This is a well written article and explains what to expect. I know we felt empowered in knowing this major signs. The description of the 'death rattle' is accurate. Thanks for sharing this.
I thought I would share this article from a Hospice group in Hawaii.
The Last Stages of Life
The last stages of life can be very stressful for the dying person and those caring for him/her. You will observe changes that may be upsetting and unfamiliar. Learning about the dying process will help. Many physical changes occur during the process of dying that affect the emotional, social, and spiritual aspects of a person’s life.
There are some signs and symptoms of dying that are observable, although not everyone follows a predictable sequence of events or stages.
Health professionals speak of “dying trajectories” that suggest how persons with specific diseases will die. For example, those with a terminal illness, such as advanced cancer, will show a steady decline toward death. Those with serious chronic illnesses may have peaks and valleys that sometimes give the impression of recovery.
Remember that each person’s death is unique.It is helpful to understand the common symptoms experienced in people who are dying. You may observe none, some, or all of these symptoms in the dying erson’s last days and hours on earth. You will also learn things to do that can help ease physical pain and suffering.
Withdrawal from the External World
As the end of life approaches, there is a feeling of detachment from the physical world and a loss of interest in things formerly found pleasurable. There is a tendency to sleep more. There is less desire to talk. This is the beginning of letting go of life and preparing for death.
Days or hours before death, the dying person becomes less and less responsive to voice and touch and may not awaken. Sometimes, quite unexpectedly, the person may appear well and even look as if he/she is going to recover.
The person may be alert and talkative. This does not mean that there will be recovery; the person is still dying. Use this as a “window of opportunity” to say what you need to say and have closure.
What you can do:• Always speak gently, and identify yourself before speaking.• Use gentle touch and provide reassurance.• Dying requires energy and focus. Try not to distract the dying person from this necessary preparation. Allow time for silence. • Remember that you are supporting the person to “let go.”
Visions and Hallucinations
Visual or auditory hallucinations are often part of the dying experience. The appearance of family members or loved ones who have died is common. These visions are considered normal. The dying may turn their focus to “another world” and talk to people or see things that others do not see. This can be unsettling, and loved ones may not know how to respond.
What you can do:• Do not judge or be critical of what is happening. Just be as silent and supportive as possible. • Refrain from discounting the experience and orienting the dying person to “reality.” This is their reality. Most often, these “visions” are reassuring, and they comfort the dying. Rarely do they upset the dying person.• It is important to differentiate visions from hallucinations or “bad dreams” that may be caused by medications or metabolic changes. While visions of loved ones are generally comforting, “bad dreams” may frighten the dying person. Alert the doctor or nurse about “bad dreams.” An adjustment in medication may correct this.
Loss of Appetite
As death nears, the dying person may lose interest in food and drink. The ability to swallow becomes impaired. Loss of appetite and reduced intake are normal parts of dying. In the early stages of dying, the dying person may prefer only soft foods and liquids.
In the very last stages of life, however, they may not want any food or drink. A dying person may want to suck on ice chips or take a small amount of liquid, just to wet and freshen the mouth, which can become very dry. In the last stages of dying, forcing food when the body says “no” may be harmful or painful to the dying person. Many dying persons will exhibit the “clenched jaw” sign as a way of saying “no.” Forcing fluid may cause choking, or the dying person may draw liquid into the lungs, making matters worse.
It is hard for most people to respect the dying person’slack of appetite. That’s because many of us equate foodwith caring. Family members may feel that withholdingnutrition is cruel or neglectful. They may worry that theyare “killing” their loved one.
It is important to remember that as the physical body is dying, the vital organs are shutting down, and nourishment is no longer required to keep them functioning. This is the wisdom of dying, and the body knows exactly what to do.
What you can do:• Refrain from giving liquids or food unless requested.• Wet the lips and mouth with a small amount ofwater, ice chips, or a sponge-tipped applicatordipped in water.• Protect lips from dryness with a protective lip balm.• Continue to be a caring and loving presence.
Now, I have no choice but to see with your eyes,so I am not alone, so you are not alone.–Yannis Ritsos
Change in Bowel and Bladder Functions
The two major concerns are constipation and incontinence (loss of control over bowel and bladder functions). Constipation may be caused by lack of mobility, pain medication, and decreased fluid intake. If left untreated, fecal impaction may occur and can become uncomfortable. Laxatives are generally needed to keep the bowels clean.
Incontinence, or loss of bowel/bladder control, is likely to be distressing to the dying person and those in attendance. In the early stages, “accidents” can occur. Asdeath nears, the muscles in these areas relax further andcontents are released. This is normal. Urine is highlyconcentrated and sparse and may look tea-colored.
Sometimes a urinary catheter is inserted, or the dying person may wear “diapers” or briefs. This will help keep linen clean (changing linen may be more disturbing to the dying person than the catheter or the diapers).
What you can do:• Keep affected areas clean and dry to avoid rashes or bedsores.• Watch for signs of constipation and incontinence, and help loved ones report this to the physician or nurse.• Talk to the doctor or nurse about the advantages of reducing food and fluid in the last stages of dying.
Confusion, Restlessness, and Agitation
Restlessness and agitation are common. These symptoms may be caused by reduced oxygen to the brain, metabolic changes, dehydration, and pain medications.
“Terminal delirium” is a condition that may be seen when the person is very close to death, marked by extreme restlessness and agitation. Although it may look distressing, this condition is not considered to be painful.
There are medications available to control symptoms. Be aware there may be unfinished business. Dying persons may try to hold on until they feel a sense of security and completion. Picking, pulling, and fidgeting behaviors may also be seen. This can result from medications, metabolic changes, or decreased oxygen to the brain.
What you can do:• Never startle the dying with bright lights, harsh tones, or abrupt movement.• Always identify yourself. Even if the dying personknows you well, he/she might not recognize you atthis time.• Use a gentle voice and reassuring touch.• With mindful awareness, be sensitive to any cues that might signal that there is something the person wants to resolve before he/she can let go. Offer support.• Consider the use of light massage and soothing music.• Ask the doctor if there are any medications that might help relieve the agitation.
Changes in Breathing, Congestion in Lungs orThroat
You may observe that breathing is shallow and quickened, or slow and labored. The person may make gurgling sounds, sometimes referred to as the “death rattle.” These sounds are due to the pooling of secretions and an inability to cough them up. The air passing through the mucus causes this sound.
The breathing pattern most disturbing to witnesses, called Cheyne-Stokes breathing, is marked by periods of no breathing at all (up to 45 seconds), followed by deeper and more frequent respirations. These respirations are common and result from decreased oxygen supply to the vital organs and a build-up of waste products in the body.
This condition is not uncomfortable or painful for the dying person, although it may be unsettling to observe. The “death rattle” or Cheyne-Stokes breathing indicate that death is near.
What you can do:• Do not panic. This can increase any fear that may already be present for the dying person.• Raise the head of the bed (mechanically or with pillows) to help breathing.• If secretions are pooling in the mouth, turn the head and position the body so that gravity can drain them. Suctioning rarely helps and is not recommended.• If appropriate, wipe out the mouth with a soft, moist cloth to cleanse excess secretions.• Speak gently and lovingly, and use gentle reassuringtouch to ease fear.• Alert the doctor or nurse if breathing is especially labored or if you notice the “death rattle” and Cheyne-Stokes breathing.
Change in Skin Temperature and Color
As the body dies, the blood moves away from the extremities toward the vital organs. You may notice that while the extremities are cool, the abdomen is warm. You may notice changes in body temperature.
The dying person may feel hot one minute and cold the next. As death approaches, there may be high fever. You also may see purplish-bluish blotches and mottling on the legs, arms or on the underside of the body where blood may be collecting. As death nears, the body may appear yellowish or waxen in color.
What you can do:• Try to keep the person as comfortable as possible.• Use a damp, cool washcloth to cool a person who feels too hot (be alert to signs such as kicking off the blankets).• Cover the dying person with a blanket if he/she feels too cold. Don’t use electric blankets or heating pads, as these may burn the skin.• Alert the doctor or nurse if you notice changes in skin color. This may be a sign that death is near.• Using a fan to circulate air may make the person more comfortable.
Tips for Caregivers
You can be a caring presence throughout the dying process. Your presence for the dying person and his/herloved ones indicates loving kindness, compassion, andwillingness to provide practical help.
Learn. Learn what you can about the dying person’s illness and the dying process so you can provide comfort and assurance.
Realize your limitations. No one is perfect. No one can do everything. Get help when you need it. Take a break when you need one. Encourage the dying person and his/her loved ones to call the doctor or nurse with questions.
Managing Physical Pain
Most physical pain can be controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled.
Pain is real. Always believe a person who says he/she has pain. Remember that each person is an individual and perceptions of pain differ.
Talking to the doctor. People should expect their doctors and nurses to ask these questions about pain:• Do you have pain?• Where is it? What does it feel like: dull, stabbing, throbbing, etc.?• How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being the worst pain you’ve ever had.• What makes the pain better or worse? The answers to these questions will help the doctor prescribe the right medicine in the right amount. Before the conversation is over, make sure that the dying person and his/her caregivers understand:• What may be causing the pain• The recommended treatment• The possible side effects• What to do if there are questions or concerns
True love is not a feeling by which we are overwhelmed. It is a committed, thoughtful decision.– M. Scott Peck
Hospice Death
Hospice care can be given in the home, nursing home, hospital, or residential facility. There are 7 hospice programs in Hawaii. Hospice care is available on every island except Niihau and Lanai. On Oahu, there are 3 dedicated hospice facilities, two affiliated with St. Francis Hospice (The Sister Maureen Kelleher Center and the Maurice J. Sullivan Family Hospice Center), and the Hospice Hawaii Kailua home. Several hospitals across the state work with local hospices to provide hospice carein the hospital. In the hospice philosophy, death is held as a natural event, not a medical event. “Care” not “cure” is the goal.
When hospice is provided in the home, family members become the primary caregivers. When possible, at least two family members or loved ones should share the responsibilities of caregiving. Hospice staff visit the home on a regular schedule. They are on-call (available round-the-clock) to provide support to the entire family. The hospice interdisciplinary staff includes doctors, registered nurses, social workers, chaplains, home health aides, and volunteers so that the dying may receive holistic, comprehensive care. Hospice nurses and doctors specialize in easing pain and suffering.
Physical and occupational therapists also can assistpatients to be as mobile and self-sufficient as possible.Music therapy, art therapy, counseling, and othertherapies are also available. Hospice believes that emotional and spiritual pain are just as real. Counselors, including clergy, are available to assist family members as well as patients.
You can give your whole attention only when you care, which means that you really love.– J. Krishnamurti
Saying GoodbyePersons who are dying often want “permission to die” from those they love. Often, they want to be assured of five things:• Things they were once responsible for will be taken care of.• The survivors will survive without them.• All is forgiven.• Their life had meaning.• They will be remembered.
Saying good-bye is not easy. Yet, it is important for the dying person and his/her loved ones to do so. Take advantage of opportunities when the person is awake and communicative to facilitate the “saying good-bye” process.
If the dying person is not lucid, or in a coma, remember that hearing is the last sense to leave. Assume everything you say can be heard and understood, even if the person is not responsive. Never speak about the dying person as if he/she was not in the room.
Some people feel comfortable lying in bed next to theirloved one as they say their parting words. Others may want to simply hold hands. If music, chanting, or prayer is used to assist the dying, let it be comforting and familiar,making way for gentle passage. The dying person’s body language will let you know if these sounds are welcome and soothing.
Even with all the preparation and knowledge that death is coming, the moment of death is not easy to see. Even those people who are closest to the dying person may choose to be absent. The decision to be present at the moment of death depends on many things. Do not judge others if they choose not to be present at the moment of death.
Being Present at the Moment of Death
It is not uncommon for the dying person to wait to die until loved ones have left the room. Make sure you allow for this. Sometimes, if a person seems to be holding on, you may simply say, “I’m going to leave the room for awhile. I love you.”
In some cultures, specific prayers, sutras, or other rituals,may ease the passage to death. These may be comforting both to the dying person and to his/her family. Ask your clergy person for assistance.
Work of sight is done.Now do heart work on the pictures within you.–Rainer Maria Rilke
Home About Answers ToolsSpeakers Bureau Grief & Bereavement LinksPartners Supporters Contact Copyright © 2005 Kokua MauSite by Wet Sand
{Sidebar}
Kokua Mau Contact Information:P.O. Box 62155 Honolulu HI 96839
Tollfree: (800) 474-2113Phone: (808) 585-9977Fax:(808) 988-4869
info@kokuamau.org
Original article may be found at: http://www.kokuamau.org/laststages/index.htm
1 comments:
oldfriend said...
This is a well written article and explains what to expect. I know we felt empowered in knowing this major signs. The description of the 'death rattle' is accurate. Thanks for sharing this.
Nurse Goodbody
Lewy took a bit of a vacation yesterday and allowed Daddy a few moments to come out to play. It was a normal morning with Lewy. Fussing over not wanting anything to eat or drink. Just being plain stubborn if you really want to know the truth. I couldn’t even get him to eat that marvelous coconut pudding I made just for him. (It was so light and fluffy too. I’ve learned a lot from watching the Food Network.)
After an hour wrestling match to get some food in him, I gave him his anti anxiety meds, or my High Anxiety Meds…which ever you prefer…Yvonne, the beautiful South American lady was due out shortly to bathe him and change his bed. This woman is so incredible. She is gentle with him and so soft spoken and polite, and so thorough. I normally give him his anxiety meds before she comes so he won’t be so hard to handle. Sure enough, he was willing to cooperate when she came. Other than trying to latch onto her, me, the bed rail, and the wall with his vice grip, he behaved very well. No poop today. Damn! Yvonne always gets the clean days….
After his bath, Lewy fell fast and deeply asleep. Ah, the peace of the morning!
The phone rang. As I run for the phone, I see it has disturbed Lewy. Maybe I can get there before he gets rousted too much…..After the call, I tip toed around to peek…No, no such luck, Lewy was waving his arms in the air. I got him some Coke and it settled him down a bit. The first time he’d asked for Coke in a month. After a few more minutes, Lewy was sleeping again.
The phone rang. Oh Damnit!! I race to catch the phone. Again it rouses Lewy enough that he starts hollering about what am I doing while I’m still on the phone. Telephone conversations seem to really upset him. After a talk with the office, I went back in to check on Lewy. “Who was that? What did they want? Is there a problem? Did everyone get paid?”…..Lewy always worries about the job, the workers, and getting everyone paid…”No, Daddy, I was my office, everything is fine everyone got paid.” As soon as I got him settled…yep…the phone rang again…On a normal day, the phone might ring twice, if that. Yesterday was at least a 10 ringer….All day long.
Needless to say Lewy was agitated. It was getting near the time that Nurse Goodbody would arrive. I gave him his pain meds, because she has to scrub out the sores on his feet until they bleed. I’m sure it is very painful. Lewy dosed off.
Lewy continued to sleep and Nurse Goodbody was late. Very late today. By the time she arrived, Lewy’s pain meds were wearing off and there would not be enough time for a new round to kick in before the scrubbing commenced. So we decided to just rough it.
Nurse Goodbody walked around to the side of Lewy’s bed just in time for Daddy to wake up and be alert. She put her hand on his forehead and was saying some nice sweet things to him, when he rose up his arms for a hug. Next thing she knew Daddy had her in a bear hug pulling her down to him for a little smooch. Yep that’s Daddy…”I told you he was a dirty old man!”
Nurse Goodbody was finally released from his grip....maybe there had been a grope too. I would not be the least surprised.. She stood up, straightened her shirt up, looked down at Daddy and said…”Ooo you are a rascal aren’t you?”
She did all the nurse duties, then we set about to change his bandages on his feet. Normally Daddy is so drugged through this procedure he tends to nap through it…This time…Oh my; he was wide awake…When Nurse Goodbody took the pads and started scrubbing his open wound, Daddy almost raised up to a sitting position…”Ooooooooo!!! I didn’t do anything to deserve that!”
We both had to laugh. “Daddy, I told you - you best leave these nurses alone, they will hurt ya.” Nurse Goodbody smiled and nodded her agreement. After much pain and effort we got Daddy’s feet re bandaged and hooked up to the pumps….no leaks….yeah! Got it the 1st time…
Nurse Goodbody when back to Daddy’s bedside to tell him bye and that she was going on vacation and another nurse would be here Wednesday and Friday. I was standing across the bed from her during her goodbye speech. “Daddy, Nurse Goodbody is talking to you, why don’t you turn your head and look at her?” For some reason, Daddy never faces over to his right. I’ve tried many times to get him to look out the window at the buttercups, but he just would not do it.
Daddy stared at the ceiling for another 10 seconds then turned his head toward Nurse Goodbody, and his face just lit up. “There you are…” she said reaching over to pat him on the head. “I’m leaving now…”
Both Daddy’s arms went up for the hug and kiss goodbye, to which she happily responded. After the short embrace, Daddy looked her right in the eyes and said “I’ll miss you.”
Nurse Goodbody, smiled looked at me and said “Oh he is so sweet.”
“No, Nurse Goodbody, he is a Dirty Old Man…and proud of it.”
Daddy just smiled. The first smile I’ve seen since the surgery.
2 comments:
pearose said...
Twinkle eyes (my new name for Lewy) seemed to have a good day yesterday!
I almost called you yesterday, too, but thought better of it with Lewy most likely sleeping.
Maybe he'll look out the window today to see the flowers, which I'm sure count into the hundreds by this point.
oldfiend said...
oops!!! I did enjoy the vette story though!
After an hour wrestling match to get some food in him, I gave him his anti anxiety meds, or my High Anxiety Meds…which ever you prefer…Yvonne, the beautiful South American lady was due out shortly to bathe him and change his bed. This woman is so incredible. She is gentle with him and so soft spoken and polite, and so thorough. I normally give him his anxiety meds before she comes so he won’t be so hard to handle. Sure enough, he was willing to cooperate when she came. Other than trying to latch onto her, me, the bed rail, and the wall with his vice grip, he behaved very well. No poop today. Damn! Yvonne always gets the clean days….
After his bath, Lewy fell fast and deeply asleep. Ah, the peace of the morning!
The phone rang. As I run for the phone, I see it has disturbed Lewy. Maybe I can get there before he gets rousted too much…..After the call, I tip toed around to peek…No, no such luck, Lewy was waving his arms in the air. I got him some Coke and it settled him down a bit. The first time he’d asked for Coke in a month. After a few more minutes, Lewy was sleeping again.
The phone rang. Oh Damnit!! I race to catch the phone. Again it rouses Lewy enough that he starts hollering about what am I doing while I’m still on the phone. Telephone conversations seem to really upset him. After a talk with the office, I went back in to check on Lewy. “Who was that? What did they want? Is there a problem? Did everyone get paid?”…..Lewy always worries about the job, the workers, and getting everyone paid…”No, Daddy, I was my office, everything is fine everyone got paid.” As soon as I got him settled…yep…the phone rang again…On a normal day, the phone might ring twice, if that. Yesterday was at least a 10 ringer….All day long.
Needless to say Lewy was agitated. It was getting near the time that Nurse Goodbody would arrive. I gave him his pain meds, because she has to scrub out the sores on his feet until they bleed. I’m sure it is very painful. Lewy dosed off.
Lewy continued to sleep and Nurse Goodbody was late. Very late today. By the time she arrived, Lewy’s pain meds were wearing off and there would not be enough time for a new round to kick in before the scrubbing commenced. So we decided to just rough it.
Nurse Goodbody walked around to the side of Lewy’s bed just in time for Daddy to wake up and be alert. She put her hand on his forehead and was saying some nice sweet things to him, when he rose up his arms for a hug. Next thing she knew Daddy had her in a bear hug pulling her down to him for a little smooch. Yep that’s Daddy…”I told you he was a dirty old man!”
Nurse Goodbody was finally released from his grip....maybe there had been a grope too. I would not be the least surprised.. She stood up, straightened her shirt up, looked down at Daddy and said…”Ooo you are a rascal aren’t you?”
She did all the nurse duties, then we set about to change his bandages on his feet. Normally Daddy is so drugged through this procedure he tends to nap through it…This time…Oh my; he was wide awake…When Nurse Goodbody took the pads and started scrubbing his open wound, Daddy almost raised up to a sitting position…”Ooooooooo!!! I didn’t do anything to deserve that!”
We both had to laugh. “Daddy, I told you - you best leave these nurses alone, they will hurt ya.” Nurse Goodbody smiled and nodded her agreement. After much pain and effort we got Daddy’s feet re bandaged and hooked up to the pumps….no leaks….yeah! Got it the 1st time…
Nurse Goodbody when back to Daddy’s bedside to tell him bye and that she was going on vacation and another nurse would be here Wednesday and Friday. I was standing across the bed from her during her goodbye speech. “Daddy, Nurse Goodbody is talking to you, why don’t you turn your head and look at her?” For some reason, Daddy never faces over to his right. I’ve tried many times to get him to look out the window at the buttercups, but he just would not do it.
Daddy stared at the ceiling for another 10 seconds then turned his head toward Nurse Goodbody, and his face just lit up. “There you are…” she said reaching over to pat him on the head. “I’m leaving now…”
Both Daddy’s arms went up for the hug and kiss goodbye, to which she happily responded. After the short embrace, Daddy looked her right in the eyes and said “I’ll miss you.”
Nurse Goodbody, smiled looked at me and said “Oh he is so sweet.”
“No, Nurse Goodbody, he is a Dirty Old Man…and proud of it.”
Daddy just smiled. The first smile I’ve seen since the surgery.
2 comments:
pearose said...
Twinkle eyes (my new name for Lewy) seemed to have a good day yesterday!
I almost called you yesterday, too, but thought better of it with Lewy most likely sleeping.
Maybe he'll look out the window today to see the flowers, which I'm sure count into the hundreds by this point.
oldfiend said...
oops!!! I did enjoy the vette story though!
Grieving In Reverse
After struggling with Lewy to get an egg and some tomato juice down for his breakfast, I gave him a good dose of his pain meds so Hubbie and I could clean him up and change his dressings.
It seems that whenever I give him the pain meds, he starts rolling his covers up in that daily cigar. Lewy rolled his sheet into a very tight precision roll. I could not have done a better job of getting a tight roll even with my best effort. Lewy twisted the covers, stared at the ceiling, and mumbled to the people he saw flying over his bed.
When the meds kicked in enough to relax him, he let go of the covers, and raised his hand up and out in front of him, and felt of things, slapped at them, made swimming motions, and pointed up at the ceiling fan. There is something about the fan that has captured his interest; unfortunately, I can’t position him in the room where he doesn’t see it, except for having him face away from us toward the wall.
Finally, he began to sleep. Hubbie and I sanitized our hands gloved up for the procedure of redressing his feet. I removed the right boot and peeled the old dressing off. Daddy howled…I looked up and asked if that hurt, but he appeared to be asleep again before I could finish the question.
We went about our duties of dressing both feet, changing the hoses, replacing the Y connector, and restarting the pump……Success! No leaks…As we were putting the boots back on, I noticed that Daddy has developed another pressure sore on his right foot. This one could only have been made by having the boot up against his little toe. I don’t see that the heels are getting any better, no worse, but not better.
We rolled him over and changed his diaper. This is not so easy. Even with as much weight as he has lost, he’s still a heavy man. Hubbie pulled him over toward him so I could wipe his bottom, and clean him up. His tail bone area is broken open now with a pair of bed sores on each side of his spine. He doesn’t complain of pain…but it has to hurt. No wonder he always has a frown on his face.
After we finished rolling him around, he fell fast asleep and slept for about 6 hours. As is somewhat normal with Lewy’s he acts out his dreams. Hubbie calls it “conducting”. I sat and watched him for a while. His face is sunken in noticeably more than it was week ago, and his arms have grown thin. He kept trying to sit up; reaching up and attempting to lift his head. He managed a stiff upper body lift, but his head was not following. He could barely get his head to lift at all.
I end up crying when I watch him this way. He is so weak and frail. It seems I’m grieving in reverse. When Momma dropped dead the shock was overwhelming. I cried and cried. Every time I found myself alone the tears would flow. Everyday for a long time, then I realized there was a day I did not cry. Gradually those days crept in and became the norm. This is just the opposite; it started out with a few tears here and there, but is ending up with daily crying sessions, several of them. As each day passes it seems they come more often.
I wonder if this means that by the time Lewy beats Daddy, if I will be through crying.
Maybe; just maybe. By then, I suspect Daddy will have been gone for a good while, and it will only be the end of Lewy.
Funny how now that it is time for Lewy the Unwelcome Guest to leave, I don’t want him to go.
2 comments:
Stella said...
I think you have the right idea about "Grieving in Reverse". Never deny your grief. To deny your grief would be to deny your love of the whole Daddy. The Daddy who loved you enough to be strict and stern when he tried to be a good daddy. When you came to him, he had no instruction sheet to go by [for raising you] no more than you have an instruction sheet to deal with caring for him. You both have done the best you can and its left up to you to tie up all the loose ends. The angels are with you.
oldfriend said...
Wow Stella, well written! And Pauline, days rambling is right on. Just remember tears are a gift.
It seems that whenever I give him the pain meds, he starts rolling his covers up in that daily cigar. Lewy rolled his sheet into a very tight precision roll. I could not have done a better job of getting a tight roll even with my best effort. Lewy twisted the covers, stared at the ceiling, and mumbled to the people he saw flying over his bed.
When the meds kicked in enough to relax him, he let go of the covers, and raised his hand up and out in front of him, and felt of things, slapped at them, made swimming motions, and pointed up at the ceiling fan. There is something about the fan that has captured his interest; unfortunately, I can’t position him in the room where he doesn’t see it, except for having him face away from us toward the wall.
Finally, he began to sleep. Hubbie and I sanitized our hands gloved up for the procedure of redressing his feet. I removed the right boot and peeled the old dressing off. Daddy howled…I looked up and asked if that hurt, but he appeared to be asleep again before I could finish the question.
We went about our duties of dressing both feet, changing the hoses, replacing the Y connector, and restarting the pump……Success! No leaks…As we were putting the boots back on, I noticed that Daddy has developed another pressure sore on his right foot. This one could only have been made by having the boot up against his little toe. I don’t see that the heels are getting any better, no worse, but not better.
We rolled him over and changed his diaper. This is not so easy. Even with as much weight as he has lost, he’s still a heavy man. Hubbie pulled him over toward him so I could wipe his bottom, and clean him up. His tail bone area is broken open now with a pair of bed sores on each side of his spine. He doesn’t complain of pain…but it has to hurt. No wonder he always has a frown on his face.
After we finished rolling him around, he fell fast asleep and slept for about 6 hours. As is somewhat normal with Lewy’s he acts out his dreams. Hubbie calls it “conducting”. I sat and watched him for a while. His face is sunken in noticeably more than it was week ago, and his arms have grown thin. He kept trying to sit up; reaching up and attempting to lift his head. He managed a stiff upper body lift, but his head was not following. He could barely get his head to lift at all.
I end up crying when I watch him this way. He is so weak and frail. It seems I’m grieving in reverse. When Momma dropped dead the shock was overwhelming. I cried and cried. Every time I found myself alone the tears would flow. Everyday for a long time, then I realized there was a day I did not cry. Gradually those days crept in and became the norm. This is just the opposite; it started out with a few tears here and there, but is ending up with daily crying sessions, several of them. As each day passes it seems they come more often.
I wonder if this means that by the time Lewy beats Daddy, if I will be through crying.
Maybe; just maybe. By then, I suspect Daddy will have been gone for a good while, and it will only be the end of Lewy.
Funny how now that it is time for Lewy the Unwelcome Guest to leave, I don’t want him to go.
2 comments:
Stella said...
I think you have the right idea about "Grieving in Reverse". Never deny your grief. To deny your grief would be to deny your love of the whole Daddy. The Daddy who loved you enough to be strict and stern when he tried to be a good daddy. When you came to him, he had no instruction sheet to go by [for raising you] no more than you have an instruction sheet to deal with caring for him. You both have done the best you can and its left up to you to tie up all the loose ends. The angels are with you.
oldfriend said...
Wow Stella, well written! And Pauline, days rambling is right on. Just remember tears are a gift.
A Christmas Story
Lewy is getting madder and grouchier every day. He wants to get up and out of bed, but with the hoses coming out of his feet and the catheter it just does not seem likely.
Therein lies the big dilemma. Do I try to heal him to get him up and about? Or do I drug him to keep him comfortable? If I drug him, he won’t eat or drink enough to thrive. If I feed and nurture – get his sores healed – and get him off the catheter, which will take several months according to the nurses; to what purpose really?
By then he will not know who he is or have any memory of his family or life. He told us back when he has thinking clearly, never to prolong, never to hook him up. It sounded so simple at that point in time. All very neat. Very logical. Clean.
But now, when I’m standing there looking at my Father, it does not seem so easy any more. Lewy drives me crazy with the fussing and hollering and demented conversations about nothing and everything all at once. But yet, he is my Dad and he’s all I have left of my immediate- blood- family. Other than him, I have only my nephew and my Crazy Aunt Tom.
So is that it? Is it pure selfishness on my part to try to prolong his life, no matter how miserable he is? I know he won’t really get any better. At best, he might sit up in the bed or stand…but walking…No.
He was barely doing that before the surgery.
Today I will drug him heavily. We must clean him and change his bandages. Scrubbing the raw meat in the foot sores until they bleed is too much to expect anyone to put up with out pain meds.
I suppose that’s the way it will go. Feed him one day….. Drug him the next.
Yesterday, for some reason Lewy asked me where my bike is. This threw me for a minute…actually long enough for him to drift off into La La Land…but it reminded me of my bike that I had when I was a kid in grade school.
------------
It was Christmas morning. I had gotten wise to the Santa thing the year or two prior, so I had no expectations of reindeer and sleigh bells. I also knew by this age that Daddy was kin to Scrooge and that Momma was responsible for all things Christmas.
As any normal kids we were up at the crack of dawn to run to see what was under the tree. Now that I think about it, I’m not sure why Momma persisted in the hiding the presents routine, since we both knew about Santa. But never the less the rouse was on…
We ran in and opened up all sorts of clothes (Yuk – Momma was practical. We needed clothes, why waste an opportunity like Christmas on toys). There was some candy but mostly things I could have cared less about, socks, shoes, some school supply things. Very boring.
Certainly at that age, I’m sure my acting skills were not refined to point of convincing either of the parents that I was not terribly disappointed in what “Santa” brought. I took my new things to my room, and put them up. (Or threw them down…)
I was so very disappointed. I don’t know what I expected, because I knew that “Money doesn’t grow on trees”…yes… heard it many times… We sat down to breakfast, ate, and Momma then proceeded as always, to clean up the kitchen. Daddy went to settle into his recliner for a day of rest from his otherwise 7 day a week job.
I went over and plopped down on the couch. I didn’t really have much to say about anything. I was sulking, and doing a very nice job of it, thank you very much… Daddy eyeballed me for a few minutes then told me to go out to his car and get his papers in the back seat for him.
Oh crap, I don’t want to go out there…I’m mad…I want to stay in the house, I want to pout. But as with most all kids in those days, if Daddy said do it, you did it right then, and you offered up no lip.
So I put on my coat and went out to his car, opened the back door and looked inside. There were no papers there, I didn’t see what it was that he wanted me to get. So I turned around and went back into the house, still sulking about, still mad at Santa.
“There’s nothing there.”
“WHAT!! WHAT DO YOU MEAN THERE"S NOTHING OUT THERE!?!” He bolted up from his chair. "It has to be in there….You didn’t actually go look did you?” The accusation;…always accusing me of not doing; or doing; whichever was the wrong move…
“I looked - there are no papers in the back seat of your car!!” I was mad.
He looked at me curiously…."Wasn’t there anything in the back seat?’
“Well, yes, there was a bicycle.” I stomped over to the couch, mad at him, mad at Momma, mad at the world.
I’m sure at this point Momma and Daddy must have wondered what on earth was going on in my head…Daddy asked me why I didn’t get the bike out of the car…
“Because it’s not mine;.... why should I?” I was getting madder. Not only did I get a bunch of crappy clothes for Christmas, but there was a really cool metallic blue girl’s bike with white handles and pink, blue and white streamers in his car that he was getting for someone else….
“Pauline…go get the bike. That’s your bike...”
I was stunned… “MINE!?!” I didn’t wait for an answer. I didn’t bother to close the door behind me either (Sin #1: Thou shalt always close the door behind you. - were ya being raised in a barn?) I ran to his car, flung the door open and started to pull out the bike. It had 24” wheels with white sidewalls…By now Daddy had come out to help. Momma was in the door watching.
We got the bike out and I had to get on it immediately…did not matter that I didn’t know how to ride. So Daddy held on to the rear fender and I sat on the bike while he pushed and I steered. It was wonderful!
After a bit of that we took the bike inside for Daddy to put the training wheels on. He was skilled with tools and made quick work of it. Then outside we went. Daddy was there every inch of the way until I got steadied enough for him to let go. I remember seeing Momma watching with her hand over her mouth…afraid I would break both of my legs no doubt.
Now you might be wondering how stupid can a kid be that would not realize the brand new blue metallic girl’s bike in her Dad’s car was not for her. But with Daddy, you never knew. He swapped and traded for all sorts of things and he also was big in the Masons, Rotary, and Lions Clubs. They were always getting things for kids that didn’t have much. So no, it never even occurred to me that it would be my bike. We couldn’t afford those expensive things; at least until that Christmas when Daddy, not Momma, brought me a bicycle for Christmas.
5 comments:
denise said...
I read your blog everyday (and love it) and have learned more from it than any support group on-line or off. My father died last October in his sleep from a number of things, none of which was dementia. We knew the end was near, there was nothing that could be done or say except to thank my dad for being my dad and to tell him over and over that I love him. It was very, very hard on the family when he died, peacefully in his sleep thank God. I think of him several times a day and am at peace knowing that I told him what I wanted to tell him and that he suffers no more. I know that he is in Heaven and just loving it.
First of all let me say that I admire the both of you tremendously for the care you have given your father. Caregivers always face the same dilemma that maybe we're not doing enough and are always feeling guilty when our emotions play into the situation. I'm facing the same situation with my husband as he, too, has Lewy Body with AD; his prognosis is 1-2 years. There are days when I believe he could go on much longer and other days I think it won't last out the year. What to do when the end is near? We all face this difficult decision when a serious illness strikes and early on it's easy to say what we would do. As the illness worsens, decisions become more difficult. I wish I had an answer for you. I was 11 years old when I met my husband and November will mark our 40 anniversary, God willing. Making the decision not to prolong a loved ones life is one that I can not be fathome. I pray that when my husband reaches that point that he peacefully dies in his sleep and joins my father in Heaven.
God bless you both.
kddove said...
i wouldn't have know it was mine, either....
Stella said...
We had such a horrible day with Freddie at the hospital yesterday, my heart was sad. When I sat down to read your post, the tears broke through as I wept for both Freddie and Mr Lewy. The bicycle story is a treasure. At the end of the story, my tears were tears of happiness for a younger Daddy and for you. Freddie has created a few miracles also for his three daughters and one son. Memories are golden. It helps so much.
oldfriend said...
I know through it all, you will make the right choices both you, Pauline and Hubbie. Thankfully, your Daddy spoke his wishes about prolonging his life. Every step you take now only serves to make a path for others to follow...bless your labors.
pearose said...
I really like hearing the stories of you and Lewy when you were together as Parent and Child. That brings us readers a new perspective of who Lewy is and of the bond between the two of you. Your Dad may be kin to Scrooge on one side, but he's kin to Santa on the other side - considering his joy at being able to give you a bike and his interest in helping out others less fortunate.
Therein lies the big dilemma. Do I try to heal him to get him up and about? Or do I drug him to keep him comfortable? If I drug him, he won’t eat or drink enough to thrive. If I feed and nurture – get his sores healed – and get him off the catheter, which will take several months according to the nurses; to what purpose really?
By then he will not know who he is or have any memory of his family or life. He told us back when he has thinking clearly, never to prolong, never to hook him up. It sounded so simple at that point in time. All very neat. Very logical. Clean.
But now, when I’m standing there looking at my Father, it does not seem so easy any more. Lewy drives me crazy with the fussing and hollering and demented conversations about nothing and everything all at once. But yet, he is my Dad and he’s all I have left of my immediate- blood- family. Other than him, I have only my nephew and my Crazy Aunt Tom.
So is that it? Is it pure selfishness on my part to try to prolong his life, no matter how miserable he is? I know he won’t really get any better. At best, he might sit up in the bed or stand…but walking…No.
He was barely doing that before the surgery.
Today I will drug him heavily. We must clean him and change his bandages. Scrubbing the raw meat in the foot sores until they bleed is too much to expect anyone to put up with out pain meds.
I suppose that’s the way it will go. Feed him one day….. Drug him the next.
Yesterday, for some reason Lewy asked me where my bike is. This threw me for a minute…actually long enough for him to drift off into La La Land…but it reminded me of my bike that I had when I was a kid in grade school.
------------
It was Christmas morning. I had gotten wise to the Santa thing the year or two prior, so I had no expectations of reindeer and sleigh bells. I also knew by this age that Daddy was kin to Scrooge and that Momma was responsible for all things Christmas.
As any normal kids we were up at the crack of dawn to run to see what was under the tree. Now that I think about it, I’m not sure why Momma persisted in the hiding the presents routine, since we both knew about Santa. But never the less the rouse was on…
We ran in and opened up all sorts of clothes (Yuk – Momma was practical. We needed clothes, why waste an opportunity like Christmas on toys). There was some candy but mostly things I could have cared less about, socks, shoes, some school supply things. Very boring.
Certainly at that age, I’m sure my acting skills were not refined to point of convincing either of the parents that I was not terribly disappointed in what “Santa” brought. I took my new things to my room, and put them up. (Or threw them down…)
I was so very disappointed. I don’t know what I expected, because I knew that “Money doesn’t grow on trees”…yes… heard it many times… We sat down to breakfast, ate, and Momma then proceeded as always, to clean up the kitchen. Daddy went to settle into his recliner for a day of rest from his otherwise 7 day a week job.
I went over and plopped down on the couch. I didn’t really have much to say about anything. I was sulking, and doing a very nice job of it, thank you very much… Daddy eyeballed me for a few minutes then told me to go out to his car and get his papers in the back seat for him.
Oh crap, I don’t want to go out there…I’m mad…I want to stay in the house, I want to pout. But as with most all kids in those days, if Daddy said do it, you did it right then, and you offered up no lip.
So I put on my coat and went out to his car, opened the back door and looked inside. There were no papers there, I didn’t see what it was that he wanted me to get. So I turned around and went back into the house, still sulking about, still mad at Santa.
“There’s nothing there.”
“WHAT!! WHAT DO YOU MEAN THERE"S NOTHING OUT THERE!?!” He bolted up from his chair. "It has to be in there….You didn’t actually go look did you?” The accusation;…always accusing me of not doing; or doing; whichever was the wrong move…
“I looked - there are no papers in the back seat of your car!!” I was mad.
He looked at me curiously…."Wasn’t there anything in the back seat?’
“Well, yes, there was a bicycle.” I stomped over to the couch, mad at him, mad at Momma, mad at the world.
I’m sure at this point Momma and Daddy must have wondered what on earth was going on in my head…Daddy asked me why I didn’t get the bike out of the car…
“Because it’s not mine;.... why should I?” I was getting madder. Not only did I get a bunch of crappy clothes for Christmas, but there was a really cool metallic blue girl’s bike with white handles and pink, blue and white streamers in his car that he was getting for someone else….
“Pauline…go get the bike. That’s your bike...”
I was stunned… “MINE!?!” I didn’t wait for an answer. I didn’t bother to close the door behind me either (Sin #1: Thou shalt always close the door behind you. - were ya being raised in a barn?) I ran to his car, flung the door open and started to pull out the bike. It had 24” wheels with white sidewalls…By now Daddy had come out to help. Momma was in the door watching.
We got the bike out and I had to get on it immediately…did not matter that I didn’t know how to ride. So Daddy held on to the rear fender and I sat on the bike while he pushed and I steered. It was wonderful!
After a bit of that we took the bike inside for Daddy to put the training wheels on. He was skilled with tools and made quick work of it. Then outside we went. Daddy was there every inch of the way until I got steadied enough for him to let go. I remember seeing Momma watching with her hand over her mouth…afraid I would break both of my legs no doubt.
Now you might be wondering how stupid can a kid be that would not realize the brand new blue metallic girl’s bike in her Dad’s car was not for her. But with Daddy, you never knew. He swapped and traded for all sorts of things and he also was big in the Masons, Rotary, and Lions Clubs. They were always getting things for kids that didn’t have much. So no, it never even occurred to me that it would be my bike. We couldn’t afford those expensive things; at least until that Christmas when Daddy, not Momma, brought me a bicycle for Christmas.
5 comments:
denise said...
I read your blog everyday (and love it) and have learned more from it than any support group on-line or off. My father died last October in his sleep from a number of things, none of which was dementia. We knew the end was near, there was nothing that could be done or say except to thank my dad for being my dad and to tell him over and over that I love him. It was very, very hard on the family when he died, peacefully in his sleep thank God. I think of him several times a day and am at peace knowing that I told him what I wanted to tell him and that he suffers no more. I know that he is in Heaven and just loving it.
First of all let me say that I admire the both of you tremendously for the care you have given your father. Caregivers always face the same dilemma that maybe we're not doing enough and are always feeling guilty when our emotions play into the situation. I'm facing the same situation with my husband as he, too, has Lewy Body with AD; his prognosis is 1-2 years. There are days when I believe he could go on much longer and other days I think it won't last out the year. What to do when the end is near? We all face this difficult decision when a serious illness strikes and early on it's easy to say what we would do. As the illness worsens, decisions become more difficult. I wish I had an answer for you. I was 11 years old when I met my husband and November will mark our 40 anniversary, God willing. Making the decision not to prolong a loved ones life is one that I can not be fathome. I pray that when my husband reaches that point that he peacefully dies in his sleep and joins my father in Heaven.
God bless you both.
kddove said...
i wouldn't have know it was mine, either....
Stella said...
We had such a horrible day with Freddie at the hospital yesterday, my heart was sad. When I sat down to read your post, the tears broke through as I wept for both Freddie and Mr Lewy. The bicycle story is a treasure. At the end of the story, my tears were tears of happiness for a younger Daddy and for you. Freddie has created a few miracles also for his three daughters and one son. Memories are golden. It helps so much.
oldfriend said...
I know through it all, you will make the right choices both you, Pauline and Hubbie. Thankfully, your Daddy spoke his wishes about prolonging his life. Every step you take now only serves to make a path for others to follow...bless your labors.
pearose said...
I really like hearing the stories of you and Lewy when you were together as Parent and Child. That brings us readers a new perspective of who Lewy is and of the bond between the two of you. Your Dad may be kin to Scrooge on one side, but he's kin to Santa on the other side - considering his joy at being able to give you a bike and his interest in helping out others less fortunate.
Rotel Tomatoes
Lewy was pretty grouchy today. He started off refusing breakfast, and then got mad because he was hungry.
Fine.
I made him two eggs and grapefruit juice. He fussed all the way through the eggs and has taken to expressing his displeasure by spitting out puree or liquid, should it suddenly offend him.
Oddly though, no matter what, he opens and suckles the eye droppers with the meds. I thought the nurses said it tasted bad. I guess it’s probably awful, the way Lewy’s taste buds are. He got mad because there was sugar in all his food…pureed twice baked potatoes, white beans, hamburger & rice, orange pulp, and a 30/70 mix of Rotel Tomatoes and a fresh cucumber chopped to mush. I made it all from scratch, well except the Rotel, and there was no sugar put on any of it.
Now that I write that paragraph, I’m wondering why I spent the afternoon messing up the kitchen to make coconut pudding for him. It turned out nice and fluffy too…For some reason I guess a real sweet might suit him. As the nurse said, eggs and milk equal protein, and he needs the calories. After making the pudding I spooned it into several of those little clear plastic drink cups used at every party in the world for wine and cocktails. That’s a large serving for Lewy, but I thought ...pie….
After they had time to chill, Daddy woke up and started twisting up his covers into the cigar again. He gets so tense he starts the weight lifter high pitched groan he does. It’s weird, that squeal seems to go on continuously without him needing to take a breath. You’d swear he was about to pop.
There’s only so much of that I can watch before I give him the anxiety meds. Again he suckles the eye dropper. Gleefully taking his “medicine”. I have a hard time thinking of it as “Medicine”. It seems like “Drugs” to me. Just what I’ve criticized nursing homes for doing. “Drugging them up, so they won’t be any trouble.” You never quite understand what its like until you walk in their shoes. I cannot imagine having a dozen Lewy’s under my keep.
I would go absolutely mad.
After a few minutes, he calmed down enough that I thought I would approach him about eating.
“NO!” He was adamant, he was not going to eat anything or drink anything. Everything I gave him made him drunk. He had to be able to drive over to town to pick up some lumber and I was up to something. Hubbie and I are conspiring to steal his customers.
“I made you coconut pudding……?”
“NO!” “I saw you over there. I know what you are doing! I knnuummn uhunummm numnum. I ain’t unnumm happen mminnmm “ And this went on for another 10 minutes.
“OK, Daddy, OK…You don’t have to eat pie if you don’t want to.”
“Come Here! When unnm getting unmmn out ununm here?”
“Do you mean; when are you going to be able to get up?”
“No…..uuummm….Am I completely dead now?’
“No, you are not dead at all.”
“Well….uunum …when am I going?”
“I don’t know Daddy; no one knows that about anybody.”
Lewy was still all twitched up with the covers wadded up over his stomach. The rest of his body was exposed to the air. I had on jeans and a sweat shirt and I felt cold. “Are you cold?”
“NO!”
“Do you want some covers?”
“NO!”
“Do you want coconut pudding?”
“NO!”
I felt his skin. It was cold. I took the electric blanket and pulled it up over him and set it on Roast. As it warmed up Lewy settled down. I placed the hospital blanket we now have over his shoulders and tucked it around to seal up any air holes.
Within a couple of minutes Lewy was not asleep but off somewhere seeing things and people I can’t see.
I stood leaning over the bed rail watching his face for a few minutes. I think it’s safe to tip toe away now.
“Have a good time Lewy.”
Fine.
I made him two eggs and grapefruit juice. He fussed all the way through the eggs and has taken to expressing his displeasure by spitting out puree or liquid, should it suddenly offend him.
Oddly though, no matter what, he opens and suckles the eye droppers with the meds. I thought the nurses said it tasted bad. I guess it’s probably awful, the way Lewy’s taste buds are. He got mad because there was sugar in all his food…pureed twice baked potatoes, white beans, hamburger & rice, orange pulp, and a 30/70 mix of Rotel Tomatoes and a fresh cucumber chopped to mush. I made it all from scratch, well except the Rotel, and there was no sugar put on any of it.
Now that I write that paragraph, I’m wondering why I spent the afternoon messing up the kitchen to make coconut pudding for him. It turned out nice and fluffy too…For some reason I guess a real sweet might suit him. As the nurse said, eggs and milk equal protein, and he needs the calories. After making the pudding I spooned it into several of those little clear plastic drink cups used at every party in the world for wine and cocktails. That’s a large serving for Lewy, but I thought ...pie….
After they had time to chill, Daddy woke up and started twisting up his covers into the cigar again. He gets so tense he starts the weight lifter high pitched groan he does. It’s weird, that squeal seems to go on continuously without him needing to take a breath. You’d swear he was about to pop.
There’s only so much of that I can watch before I give him the anxiety meds. Again he suckles the eye dropper. Gleefully taking his “medicine”. I have a hard time thinking of it as “Medicine”. It seems like “Drugs” to me. Just what I’ve criticized nursing homes for doing. “Drugging them up, so they won’t be any trouble.” You never quite understand what its like until you walk in their shoes. I cannot imagine having a dozen Lewy’s under my keep.
I would go absolutely mad.
After a few minutes, he calmed down enough that I thought I would approach him about eating.
“NO!” He was adamant, he was not going to eat anything or drink anything. Everything I gave him made him drunk. He had to be able to drive over to town to pick up some lumber and I was up to something. Hubbie and I are conspiring to steal his customers.
“I made you coconut pudding……?”
“NO!” “I saw you over there. I know what you are doing! I knnuummn uhunummm numnum. I ain’t unnumm happen mminnmm “ And this went on for another 10 minutes.
“OK, Daddy, OK…You don’t have to eat pie if you don’t want to.”
“Come Here! When unnm getting unmmn out ununm here?”
“Do you mean; when are you going to be able to get up?”
“No…..uuummm….Am I completely dead now?’
“No, you are not dead at all.”
“Well….uunum …when am I going?”
“I don’t know Daddy; no one knows that about anybody.”
Lewy was still all twitched up with the covers wadded up over his stomach. The rest of his body was exposed to the air. I had on jeans and a sweat shirt and I felt cold. “Are you cold?”
“NO!”
“Do you want some covers?”
“NO!”
“Do you want coconut pudding?”
“NO!”
I felt his skin. It was cold. I took the electric blanket and pulled it up over him and set it on Roast. As it warmed up Lewy settled down. I placed the hospital blanket we now have over his shoulders and tucked it around to seal up any air holes.
Within a couple of minutes Lewy was not asleep but off somewhere seeing things and people I can’t see.
I stood leaning over the bed rail watching his face for a few minutes. I think it’s safe to tip toe away now.
“Have a good time Lewy.”
Stages of LBD and Lewy Update
Karen, (in the San Francisco Bay Area)
I found the “levels” of LBD text I mentioned. This was lifted from a forum conversation. There was no reference cited.
Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course ofaction.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost
This second finding was complete from beginning to end stages
Dementia can be divided into seven stages which are similar to those in Alzheimer’s disease. The seven stages of dementia are as follows:
I. No impairment of normal function: No sign of memory loss are visible to a medical professional nor does the patient experience any symptoms.
II. Very mild cognitive decline: People may experience some loss of memory such forgetting familiar words, names, or location of wristwatch, eyeglasses or any such objects of daily use. Family, friends or colleagues may observe these signs.
III. Mild cognitive decline: Early stage dementia can be diagnosed only in some individuals with the following symptoms:
The patient has trouble remembering words or names.
The patient loses the ability to remember names of individuals newly introduced to him or her.
Difference in performance can be easily noticeable in work environment, social environment by family, friends or colleagues.
Less retention from articles or stories read in a magazine or book.
The patient misplaces or loses valuable objects.
Decreased ability to plan or organize.
IV. Moderate cognitive decline: It is a mild or early stage dementia with the following clear cut deficiencies being observed:
The patient fails recollect recent incidents or current events.
The patient cannot perform some challenging mental arithmetic such as counting backwards from say 100 by 7s.
The patient is not able to plan or organize complex tasks such as arranging a party, planning a picnic etc.,
The patient would remain socially withdrawn and silent in challenging situations.
V. Moderately severe cognitive decline: It is a moderate or mid-stage AD with major gaps in memory and deficits in cognitive function. Assistance with daily activities may be required and following deficiencies are observed:
The patient fails to recall current address, telephone number and name of the college or school from which they graduated.
The patient is in a confused state of mind with regards to their current location, date, day of the week, season etc.,
The patient fails to perform even lesser challenging mental arithmetic such as counting backwards from 40 by 4s.
The patient requires help in choosing the appropriate clothing for a particular season or occasion.
Generally, the patient retains substantial knowledge and can tell his or her own name, names of their spouse or children.
The patients do not require any assistance for eating or using toilet.
VI. Severe cognitive decline: It is the next to the last stage and is also called moderately severe or mid-stage of dementia with memory difficulties continuing to worsen, personality changes emerging substantially and the patients requiring a considerable amount of help for carrying out their day-to-day activities. The following symptoms are observed in the patients:
The patient loses track of some of the most recent experiences, events and even their surroundings. The patient cannot recall personal history exactly, though she/he can recall her or his name perfectly. The patient can distinguish familiar faces from unfamiliar faces.
The patient requires help to dress appropriately, since they tend to create errors such as wearing shoes on the wrong feet etc.,
The patient experiences a disturbance in normal sleep waking cycle.
The patient would require the help for handling details of toileting such as flushing toilet, wiping and proper disposal of tissue paper.
There are increasing episodes of urinary or fecal incontinence.
Changes in behavior including suspicion and delusions such as suspecting the care giver as an impostor, hallucinations, repetitive behavior such as hand wringing etc.,
The patient tends to wander and become lost.
VII. Very severe cognitive decline: It is the ultimate stage and is called Severe or late-stage with the patient losing the ability to respond to the environment, unable to communicate orally and unable to control movements.
Very often patients in this stage lose the ability to communicate in a recognizable speech though they utter phrases occasionally.
Patients need assistance in eating and toileting with “general incontinence of urine” (9).
Patients gradually lose the ability to walk without support, to sit, to smile and hold their head up. Muscles become rigid and reflexes abnormal with swallowing becoming impaired (9).
Article by Kona Vishnu, MS
Medical Writer
OmniMedicalSearch.com
I thought since I found these I might pass them on. All this is probably old news to everyone but me and Karen in SF.
Daddy-Lewy is clearly in Stage 7. Now that I sit and read these, Lewy has been in Stage 6 for at least two years. The scariest part by this standard is; I’m in Stage 3!!
Daddy was hungry this morning and had a good meal and lots to drink. He was more or less with me, but in and out I’d say. At noon I feed him again and he was thirsty. By the end of the feeding he was twisting his sheet up into a tight knot again. He was straining so hard to wring it as tight as he could. He seemed afraid of something.
Now that I’ve decided the pain killers were killing his appetite, I didn’t want to give him any of that stuff, so I gave him a dose of the anti anxiety drug. After a few minutes he calmed down and began (I’m guessing here, to be honest) hallucinating. He was reaching up to the ceiling, first grabbing then pointing, and grabbing again. “They” were coming through the ceiling. A few minutes more and he was sleeping.
As the sun angle shifted into the windows beside Lewy, I could see that his eyes are now sunk back in his skull, and his once chubby face is now drawn upward like Popeye’s and his cheeks sink in making his skin look tight.
When he looks at me, mostly it is a puzzled expression I see. I think he is forgetting who I am more often. In fact maybe most of the time would be closer. I stood over him slighting leaning on his bed rail. I watched his eyes for some bit of contact. He finally after about a minute found my eyes, paused and said “Audrey?”
“No, it’s me Pauline.” Now I wonder if in his confusion he’s thinking he just called his wife by his latest girlfriends name….doubtful. I don’t think he could get that complex, but he sure did get that OH SHIT!! look.
For me, I’m pissed that he thinks I look 80.
3 comments:
3rd Wife said...
I wasn't going to make a comment about the different stages for fear that it would sound like I'm making light of the situation. But, since Pauline said it first....I feel like I'm somewhere between Stage 3 and Stage 4 already!
Pauline, it's supposed to be a beautiful day. Hopefully you can get outside for a bit and enjoy it!
kddove said...
stages 3 and 4 sound a lot like me, it seems like my whole life! especially the parts about not completing tasks...my doctor just put me on ADD medicine, now i can't STOP doing what i begin....
pearose said...
Hi Pauline! I know it's Hospice day for Lewy, so maybe you will get a chance to spend much of the day in this gorgeous weather. This weather will zap some stress away.
Maybe the sunshine will have a relaxing effect on Lewy, too!
I found the “levels” of LBD text I mentioned. This was lifted from a forum conversation. There was no reference cited.
Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course ofaction.
6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost
This second finding was complete from beginning to end stages
Dementia can be divided into seven stages which are similar to those in Alzheimer’s disease. The seven stages of dementia are as follows:
I. No impairment of normal function: No sign of memory loss are visible to a medical professional nor does the patient experience any symptoms.
II. Very mild cognitive decline: People may experience some loss of memory such forgetting familiar words, names, or location of wristwatch, eyeglasses or any such objects of daily use. Family, friends or colleagues may observe these signs.
III. Mild cognitive decline: Early stage dementia can be diagnosed only in some individuals with the following symptoms:
The patient has trouble remembering words or names.
The patient loses the ability to remember names of individuals newly introduced to him or her.
Difference in performance can be easily noticeable in work environment, social environment by family, friends or colleagues.
Less retention from articles or stories read in a magazine or book.
The patient misplaces or loses valuable objects.
Decreased ability to plan or organize.
IV. Moderate cognitive decline: It is a mild or early stage dementia with the following clear cut deficiencies being observed:
The patient fails recollect recent incidents or current events.
The patient cannot perform some challenging mental arithmetic such as counting backwards from say 100 by 7s.
The patient is not able to plan or organize complex tasks such as arranging a party, planning a picnic etc.,
The patient would remain socially withdrawn and silent in challenging situations.
V. Moderately severe cognitive decline: It is a moderate or mid-stage AD with major gaps in memory and deficits in cognitive function. Assistance with daily activities may be required and following deficiencies are observed:
The patient fails to recall current address, telephone number and name of the college or school from which they graduated.
The patient is in a confused state of mind with regards to their current location, date, day of the week, season etc.,
The patient fails to perform even lesser challenging mental arithmetic such as counting backwards from 40 by 4s.
The patient requires help in choosing the appropriate clothing for a particular season or occasion.
Generally, the patient retains substantial knowledge and can tell his or her own name, names of their spouse or children.
The patients do not require any assistance for eating or using toilet.
VI. Severe cognitive decline: It is the next to the last stage and is also called moderately severe or mid-stage of dementia with memory difficulties continuing to worsen, personality changes emerging substantially and the patients requiring a considerable amount of help for carrying out their day-to-day activities. The following symptoms are observed in the patients:
The patient loses track of some of the most recent experiences, events and even their surroundings. The patient cannot recall personal history exactly, though she/he can recall her or his name perfectly. The patient can distinguish familiar faces from unfamiliar faces.
The patient requires help to dress appropriately, since they tend to create errors such as wearing shoes on the wrong feet etc.,
The patient experiences a disturbance in normal sleep waking cycle.
The patient would require the help for handling details of toileting such as flushing toilet, wiping and proper disposal of tissue paper.
There are increasing episodes of urinary or fecal incontinence.
Changes in behavior including suspicion and delusions such as suspecting the care giver as an impostor, hallucinations, repetitive behavior such as hand wringing etc.,
The patient tends to wander and become lost.
VII. Very severe cognitive decline: It is the ultimate stage and is called Severe or late-stage with the patient losing the ability to respond to the environment, unable to communicate orally and unable to control movements.
Very often patients in this stage lose the ability to communicate in a recognizable speech though they utter phrases occasionally.
Patients need assistance in eating and toileting with “general incontinence of urine” (9).
Patients gradually lose the ability to walk without support, to sit, to smile and hold their head up. Muscles become rigid and reflexes abnormal with swallowing becoming impaired (9).
Article by Kona Vishnu, MS
Medical Writer
OmniMedicalSearch.com
I thought since I found these I might pass them on. All this is probably old news to everyone but me and Karen in SF.
Daddy-Lewy is clearly in Stage 7. Now that I sit and read these, Lewy has been in Stage 6 for at least two years. The scariest part by this standard is; I’m in Stage 3!!
Daddy was hungry this morning and had a good meal and lots to drink. He was more or less with me, but in and out I’d say. At noon I feed him again and he was thirsty. By the end of the feeding he was twisting his sheet up into a tight knot again. He was straining so hard to wring it as tight as he could. He seemed afraid of something.
Now that I’ve decided the pain killers were killing his appetite, I didn’t want to give him any of that stuff, so I gave him a dose of the anti anxiety drug. After a few minutes he calmed down and began (I’m guessing here, to be honest) hallucinating. He was reaching up to the ceiling, first grabbing then pointing, and grabbing again. “They” were coming through the ceiling. A few minutes more and he was sleeping.
As the sun angle shifted into the windows beside Lewy, I could see that his eyes are now sunk back in his skull, and his once chubby face is now drawn upward like Popeye’s and his cheeks sink in making his skin look tight.
When he looks at me, mostly it is a puzzled expression I see. I think he is forgetting who I am more often. In fact maybe most of the time would be closer. I stood over him slighting leaning on his bed rail. I watched his eyes for some bit of contact. He finally after about a minute found my eyes, paused and said “Audrey?”
“No, it’s me Pauline.” Now I wonder if in his confusion he’s thinking he just called his wife by his latest girlfriends name….doubtful. I don’t think he could get that complex, but he sure did get that OH SHIT!! look.
For me, I’m pissed that he thinks I look 80.
3 comments:
3rd Wife said...
I wasn't going to make a comment about the different stages for fear that it would sound like I'm making light of the situation. But, since Pauline said it first....I feel like I'm somewhere between Stage 3 and Stage 4 already!
Pauline, it's supposed to be a beautiful day. Hopefully you can get outside for a bit and enjoy it!
kddove said...
stages 3 and 4 sound a lot like me, it seems like my whole life! especially the parts about not completing tasks...my doctor just put me on ADD medicine, now i can't STOP doing what i begin....
pearose said...
Hi Pauline! I know it's Hospice day for Lewy, so maybe you will get a chance to spend much of the day in this gorgeous weather. This weather will zap some stress away.
Maybe the sunshine will have a relaxing effect on Lewy, too!
Before The Fall
Hubbie here. Today I want to tell you a bit about Pauline’s father; about Daddy; about before Lewy.
Pauline has told you before that we don’t have any children. The reasons are a long story for another day. That being the case we are probably not the best to judge Lewy’s “relative age”. Pauline has touched upon this as well. Many people before us have noted that humans in the latter stages of life take on the traits of humans in their early years. So by “relative age” we mean the childhood age that is equivalent to where Lewy is now.
A few years back I would tell everyone that having Pauline’s father living with us was like having a seventy-something year old teenager in the house. And it was true. When Daddy was driving he drove way too fast and, of course, got really defensive if you mentioned it. He’d sit in his room and play guitar. He slept late most mornings and stayed out late on many nights. Some nights he did not come home at all! I tried that once as a teenager and it didn’t go over too well. But even with a relative age of 18, Daddy was still Daddy. We couldn’t ground him and I sure as hell was not going to spank him, though I will admit that the idea strikes me as hysterical.
Pauline has told you (seems to be a theme here) her father is, was, an excellent dancer. Many years ago he and her mother took ballroom dancing lessons. When they retired to Florida; The Elderly People’s Republic, the community they chose to reside in held dances at least once a week. They had live bands and refreshments. Pauline and I attended a New Year’s Eve dance there one year so I can vouch for the fact that this bunch of old folks knew how to party. They all knew how do dance well but Pauline’s parents were often the stars of the show.
Sometime after Daddy came to live with us he began to develop a social network. His sister, Crazy Aunt Tom, lived near here and they would go to dances once or twice a week. There Daddy met a number of folks his age and many of them, like him, had lost their spouse. As we all know wives typically outlive their husbands (insert your favorite joke on the subject here) so most of the ones in that category were widows. And many of those widows loved to dance; and flirt. For Daddy it was a perfect storm, he loved to dance, he loved to flirt, and he was really good at both. Heck, he is still really good at the latter.
I’m here to tell you something………… Guys, learn to dance. If you do then when you get old you have it made. Daddy told me about the dances once. It seems they are a lot like every high school dance you ever attended; unless they came with a group, the girls sat with the girls and the boys sat with the boys. It seems Daddy was the king of the boys as far as the widows were concerned. He was reasonably well off; he was in good shape; he was (is) a natural flirt; and he could dance! He told me that he could make eye contact with a lady across the dance floor, then do that “come here” motion with his index finger and the lady would actually come gliding across the floor to dance with him. In no time at all he had girlfriends. You read it right…………girlfriends……..plural. It is really strange to have a 60 or 70 year old woman call and ask “Is Daddy there?”
You can hear the 16 year old girl that they used to be in their voice. It’s kind of creepy.
To be fair, Daddy never really “played the field”. There was always a primary lady. But there was always a back-up. And Lord did they pamper him. One lady would come over and cut his hair and trim his nails. I actually kept expecting one to call and ask,
“Can Lewy come out and play?”
“No, Lewy stayed out all night so he is in sitting in the corner.”
“Would you tell him I called?...........Please!”
“Sure honey. He’ll call you later.”
When Lewy and a lady latched on to each other as something special, was when it got really weird. They would be like two teenagers going steady. They would talk on the phone; and they talked like teenagers.
Daddy would get this school boy laugh and we could only imagine what she was saying. I know what we did as teenagers but transposing that to Daddy and his girlfriends was……………..weird………very weird.
One day when Pauline was away. Daddy, for some reason, decided to tell me about why he had not come home the night before. My brain shut down. All I remember is “then we got in the shower”. My brain plugged imaginary fingers in my ears and screamed “La la la la la la…………”.
So for those of you who are elderly, I hope you have sex every night so hot that it makes the neighborhood dogs howl - but please, don’t ask; and for God’s sake don’t tell! Those of us right behind you might be encouraged by your exploits but that won’t do us any good if some terribly disturbing image is burned into our brain.
I mean really, what are you, ...sixteen years old?
--------------------------------------------
Pauline here.
The hospice ladies came by today. Yvonne, is so nice. A lovely petite lady from South America. She washes Daddy and changes the bed. Daddy is clean. Very clean. Nurse Goodbody came by too. We changed his dressings, Daddy's vital signs were fine. I'm still withholding the pain meds, and he is eating and drinking better. Still not enough to do much more than sustain.
Lewy is hallucinating a lot. Last night he was worried about some piece of the ship as they navigated under the San Fransisco Bay Bridge. I told him I over heard the Skipper say everything was all right; Not to worry.
He was relieved a bit.
And OBTW, Lewy's last girlfriend called today. She's coming over to see him.
1 comments:
old friend said...
I'm glad Lewy's lady is coming...tell her to wear perfume!
good writing, Hubbie.
Pauline has told you before that we don’t have any children. The reasons are a long story for another day. That being the case we are probably not the best to judge Lewy’s “relative age”. Pauline has touched upon this as well. Many people before us have noted that humans in the latter stages of life take on the traits of humans in their early years. So by “relative age” we mean the childhood age that is equivalent to where Lewy is now.
A few years back I would tell everyone that having Pauline’s father living with us was like having a seventy-something year old teenager in the house. And it was true. When Daddy was driving he drove way too fast and, of course, got really defensive if you mentioned it. He’d sit in his room and play guitar. He slept late most mornings and stayed out late on many nights. Some nights he did not come home at all! I tried that once as a teenager and it didn’t go over too well. But even with a relative age of 18, Daddy was still Daddy. We couldn’t ground him and I sure as hell was not going to spank him, though I will admit that the idea strikes me as hysterical.
Pauline has told you (seems to be a theme here) her father is, was, an excellent dancer. Many years ago he and her mother took ballroom dancing lessons. When they retired to Florida; The Elderly People’s Republic, the community they chose to reside in held dances at least once a week. They had live bands and refreshments. Pauline and I attended a New Year’s Eve dance there one year so I can vouch for the fact that this bunch of old folks knew how to party. They all knew how do dance well but Pauline’s parents were often the stars of the show.
Sometime after Daddy came to live with us he began to develop a social network. His sister, Crazy Aunt Tom, lived near here and they would go to dances once or twice a week. There Daddy met a number of folks his age and many of them, like him, had lost their spouse. As we all know wives typically outlive their husbands (insert your favorite joke on the subject here) so most of the ones in that category were widows. And many of those widows loved to dance; and flirt. For Daddy it was a perfect storm, he loved to dance, he loved to flirt, and he was really good at both. Heck, he is still really good at the latter.
I’m here to tell you something………… Guys, learn to dance. If you do then when you get old you have it made. Daddy told me about the dances once. It seems they are a lot like every high school dance you ever attended; unless they came with a group, the girls sat with the girls and the boys sat with the boys. It seems Daddy was the king of the boys as far as the widows were concerned. He was reasonably well off; he was in good shape; he was (is) a natural flirt; and he could dance! He told me that he could make eye contact with a lady across the dance floor, then do that “come here” motion with his index finger and the lady would actually come gliding across the floor to dance with him. In no time at all he had girlfriends. You read it right…………girlfriends……..plural. It is really strange to have a 60 or 70 year old woman call and ask “Is Daddy there?”
You can hear the 16 year old girl that they used to be in their voice. It’s kind of creepy.
To be fair, Daddy never really “played the field”. There was always a primary lady. But there was always a back-up. And Lord did they pamper him. One lady would come over and cut his hair and trim his nails. I actually kept expecting one to call and ask,
“Can Lewy come out and play?”
“No, Lewy stayed out all night so he is in sitting in the corner.”
“Would you tell him I called?...........Please!”
“Sure honey. He’ll call you later.”
When Lewy and a lady latched on to each other as something special, was when it got really weird. They would be like two teenagers going steady. They would talk on the phone; and they talked like teenagers.
Daddy would get this school boy laugh and we could only imagine what she was saying. I know what we did as teenagers but transposing that to Daddy and his girlfriends was……………..weird………very weird.
One day when Pauline was away. Daddy, for some reason, decided to tell me about why he had not come home the night before. My brain shut down. All I remember is “then we got in the shower”. My brain plugged imaginary fingers in my ears and screamed “La la la la la la…………”.
So for those of you who are elderly, I hope you have sex every night so hot that it makes the neighborhood dogs howl - but please, don’t ask; and for God’s sake don’t tell! Those of us right behind you might be encouraged by your exploits but that won’t do us any good if some terribly disturbing image is burned into our brain.
I mean really, what are you, ...sixteen years old?
--------------------------------------------
Pauline here.
The hospice ladies came by today. Yvonne, is so nice. A lovely petite lady from South America. She washes Daddy and changes the bed. Daddy is clean. Very clean. Nurse Goodbody came by too. We changed his dressings, Daddy's vital signs were fine. I'm still withholding the pain meds, and he is eating and drinking better. Still not enough to do much more than sustain.
Lewy is hallucinating a lot. Last night he was worried about some piece of the ship as they navigated under the San Fransisco Bay Bridge. I told him I over heard the Skipper say everything was all right; Not to worry.
He was relieved a bit.
And OBTW, Lewy's last girlfriend called today. She's coming over to see him.
1 comments:
old friend said...
I'm glad Lewy's lady is coming...tell her to wear perfume!
good writing, Hubbie.
Last Kiss
I didn’t post up yesterday on Lewy’s condition, because there just was not much to say. He remained asleep all day, through the Nurse’s Aide’s bath, and through the regular nurse and me changing his foot bandages with the suction pumps.
Near sundown he started getting agitated. We tried to feed him some, give him juice, but he would hardly take any of it. He became so agitated that I broke down and gave him the meds that I think are making him worse. It’s very selfish of me. I cannot handle the struggling and straining to get up and out of the bed.
This morning, I put the white beans I made last night in the blender and pulverized them into a paste. I poured up about an ounce of grapefruit juice and went over to wake up Daddy to feed him. An eye dropper is the best thing I’ve found to get something wet in his mouth. After a few droppers full of juice he was better able to open his mouth and attempt communication.
“Are you hungry?”
“uuunummnununum…no”
“You have to eat Daddy, you just have to eat.” I turned to get him some more grapefruit juice and he started coughing up mucus from his lungs. Now, anyone who knows me knows I can take blood, pee, and chili shit, but I cannot take body fluids that are slimy and stringy….I’m going to hurl just thinking about it…..deep breath…..calm…
As I approached daddy with the juice, he spat that enormous wad of slime at me, hitting my face and hair.
I was doubled over gagging and crying. “Why did you do that to me Daddy? Why?” I looked at him, I know with eyes full of rejection and disappointment. In my heart I don’t think he would do that to me on purpose but yet he is staring right at me. He started working up another glob.
I turned, went to the kitchen to wash off my face and hair, still sobbing. I looked back around at him, and he launched this loogee out over the bed rail into the middle of the living room floor. ….Oh geez, now I have that to clean up, I will puke, no way around it. I grabbed a washcloth and wet it…….Deep breath…..Deep breath….Ok, lets go….come on….get it together…..I finally got my feet to move. I approached his bed…his eyes were fixed on me.
As I turned the corner to go around his recliner to ward the bed, I looked to the floor to see where the loogey was. There were dozens of them. I can’t believe I managed to walk through them and not step in it!........Breathe Pauline….Breathe….run outside….quick…..I ran out onto the front porch. Lewy could see me through the window. I doubled over and had an uncontrollable gagging fit lasting well over a minute. Afterwards, I stood up, took several deep breaths and went back in. I was able to swab down the square yard of floor that was pelted with the phlegm.
Gagging I ran the washcloth to the washing machine and tossed it. Upon arriving back at Lewy’s bedside, he was wide eyed looking at me and trying to talk. I held a glass of water with a straw for him to drink. He took a couple of sips and spit it out.
“Daddy if you don’t drink something you will die. You have to drink.” I put the straw up to his mouth, he didn’t want to take it. “Daddy you have to drink something. This is good cold water; now come on….” He took a few sips and swallowed them. A few sips more and he had 8 ounces of water in his belly.
As I looked him over, I noticed the bed rails were covered with dried up phlegm. The bed under him was wet up to his shoulders where he had been spitting up and it was just running down his neck and shoulders to the bed…an then there was the puddle of goo.
LOOK AWAY! LOOK AWAY!!! The gag reflex was working overtime today. I got another clean cloth and shut my eyes and wiped around the shoulder. …….breathe……breathe…..
Since I’m here alone with him, and there will be no nurse by today, The best I could do at the moment was to get a disposable pee pad and wedge it under his head and shoulders. Every time I came into view, Daddy was staring at me.
“Pauline….?”
“Yes Daddy?”
“Is Momma gone?” “Yes Daddy, Mommas gone.” (It was exactly 11 years ago Sunday) Daddy burst into tears. I cried with him. I miss my momma so much, but I’m glad she is not seeing Daddy this way.
I put my hand on Daddy’s forehead and gently stroked his white hair back. He reached across himself to take my other hand that was on the bed rail. He squeezed my hand. I cried more, he cried more.
Daddy looked at me and asked “where is everybody?”
“There’s no one left but me and you Daddy. Momma’s gone. Brother is gone.” He cried out loud then.
“unmunm take….nunm …me…out…and…dump………..”
“No Daddy, I’m not going to take you out and dump you.” He has always talked about when the time comes to just go dump him in the river….
I turned to get him more water. He refused the drink. “Daddy, you have to drink. You HAVE to.”
“I don’t want to.” Plain as day…
“If we don’t get some fluids in you, it won’t take but a few days, now come on drink.” He turned his head. I stopped with the water and returned to his bed side.
Daddy looked me straight in the eyes, reached up to take my hand again, and said “I want to kiss you.” Now I’m crying again. My Dad never showed any affection towards us kids, especially me. I leaned over the rail and kissed him on the forehead, still sobbing.
When we remade eye contact he said “I want umnum kiss you.”
So I bent over and pecked the tip of his nose. He grabbed onto my shoulder to pull me down for a lip to lip kiss.
I know that in later stages of dementia, that Lewys may do inappropriate sexual things; and now that I clearly really do look like my mother, what he was wanting was a wet smooch.
I allowed our lips to touch, but recoiled as rapidly as a double barrel shotgun, with both barrels blazing. He seemed a bit shocked, looking at me puzzled. I supposed he wondered if he would ever get another chance for a last kiss with Momma.
2 comments:
pearose said...
Wow Pauline. Lewy's emotions are raging full force, it seems.
Sundowning is also a common theme for dementia patients. Based on the research I have found, I really think it goes back to our nomadic forefathers who had to set up camp by sundown. We've only had electricity for a short while in the human experience, so night time and darkness has been associated with uneasiness throughout our human history.
I met an Australian writer online, who was dying of cancer at the time, who had lived with the natives (Aboriginees) of Australia. Based on my question left on the Anthropology board on this very subject, he took it upon himself to do some research with the tribes he knew and asked about Sundowning amongst those who still live without electricity. Yes, they still experience a sense of unease at night with angst regarding unknown predators. Work (based on survival needs) have to be completed by sundown.
Agitation is a part of sundowning. Every day, right before Sundown, begin to play music to engage his senses and brain function. His brain is no longer functioning normally and again, the 'survival functions' are located in the brain stem - often one of the first areas of the brain in Alzheimer's Disease to become affected (not sure about LBD - does anyone know that?).
Because of the inability to rationalize the unease they are feeling, agitation and fear become overwhelming behaviors. Engaging the senses with music, a familiar taste or a familiar 'feel' (like Tweak) will have a calming influence on them. They are still connected with reality through those familiar sensing experiences (long term memories). Anything associated with short term memory will most likely have been damaged by the ravages associated with Dementia. So, keep the long term memory sensory experiences available in some form (and you will have to decide which is the most effective in your case), so there can be a connection with reality.
Smell is the last sense to be reduced by age, so find a smell that will engage his olfactory senses. The senses involving smell are postiively associated with memories (and long term memories are the ones that last the longest, obviously).
I am so sorry about what happened. He's in there, as you well know. The rest is the disease. Depression, as a comorbid factor with dementia, can do an overwhelming amount of damage as well. You are dealing with his depression, too. The hardest aspect of this for you is that you may want to do the fighting for him, since he may be giving up. It's a tough situation.
Take some time for yourself today. Hey - gorgeous weather out there (if you are a duck or turtle!), but this rain will bring us a green Spring.
There are many in support of you. Don't ever think that you are alone. We may not be there in person, but you have the respect of many and you probably have no clue why. Your strength and willingness to take on this huge responsibility is nothing short of extraordinary.
3rd Wife said...
Sundowning is also common in children. I experienced it with both of mine, but particularly with my oldest who was the colicky one. It is hard to deal with, no doubt. I remember the feelings of hopelessness because I knew that nothing I did was going to make a difference.
So...I say again, don't let guilt be a part of your feelings. Quite easy for me to say, I know. But you truly are going the extra 100 miles and doing all that you can do.
Your post made me cry today. Very touching and very raw.
Near sundown he started getting agitated. We tried to feed him some, give him juice, but he would hardly take any of it. He became so agitated that I broke down and gave him the meds that I think are making him worse. It’s very selfish of me. I cannot handle the struggling and straining to get up and out of the bed.
This morning, I put the white beans I made last night in the blender and pulverized them into a paste. I poured up about an ounce of grapefruit juice and went over to wake up Daddy to feed him. An eye dropper is the best thing I’ve found to get something wet in his mouth. After a few droppers full of juice he was better able to open his mouth and attempt communication.
“Are you hungry?”
“uuunummnununum…no”
“You have to eat Daddy, you just have to eat.” I turned to get him some more grapefruit juice and he started coughing up mucus from his lungs. Now, anyone who knows me knows I can take blood, pee, and chili shit, but I cannot take body fluids that are slimy and stringy….I’m going to hurl just thinking about it…..deep breath…..calm…
As I approached daddy with the juice, he spat that enormous wad of slime at me, hitting my face and hair.
I was doubled over gagging and crying. “Why did you do that to me Daddy? Why?” I looked at him, I know with eyes full of rejection and disappointment. In my heart I don’t think he would do that to me on purpose but yet he is staring right at me. He started working up another glob.
I turned, went to the kitchen to wash off my face and hair, still sobbing. I looked back around at him, and he launched this loogee out over the bed rail into the middle of the living room floor. ….Oh geez, now I have that to clean up, I will puke, no way around it. I grabbed a washcloth and wet it…….Deep breath…..Deep breath….Ok, lets go….come on….get it together…..I finally got my feet to move. I approached his bed…his eyes were fixed on me.
As I turned the corner to go around his recliner to ward the bed, I looked to the floor to see where the loogey was. There were dozens of them. I can’t believe I managed to walk through them and not step in it!........Breathe Pauline….Breathe….run outside….quick…..I ran out onto the front porch. Lewy could see me through the window. I doubled over and had an uncontrollable gagging fit lasting well over a minute. Afterwards, I stood up, took several deep breaths and went back in. I was able to swab down the square yard of floor that was pelted with the phlegm.
Gagging I ran the washcloth to the washing machine and tossed it. Upon arriving back at Lewy’s bedside, he was wide eyed looking at me and trying to talk. I held a glass of water with a straw for him to drink. He took a couple of sips and spit it out.
“Daddy if you don’t drink something you will die. You have to drink.” I put the straw up to his mouth, he didn’t want to take it. “Daddy you have to drink something. This is good cold water; now come on….” He took a few sips and swallowed them. A few sips more and he had 8 ounces of water in his belly.
As I looked him over, I noticed the bed rails were covered with dried up phlegm. The bed under him was wet up to his shoulders where he had been spitting up and it was just running down his neck and shoulders to the bed…an then there was the puddle of goo.
LOOK AWAY! LOOK AWAY!!! The gag reflex was working overtime today. I got another clean cloth and shut my eyes and wiped around the shoulder. …….breathe……breathe…..
Since I’m here alone with him, and there will be no nurse by today, The best I could do at the moment was to get a disposable pee pad and wedge it under his head and shoulders. Every time I came into view, Daddy was staring at me.
“Pauline….?”
“Yes Daddy?”
“Is Momma gone?” “Yes Daddy, Mommas gone.” (It was exactly 11 years ago Sunday) Daddy burst into tears. I cried with him. I miss my momma so much, but I’m glad she is not seeing Daddy this way.
I put my hand on Daddy’s forehead and gently stroked his white hair back. He reached across himself to take my other hand that was on the bed rail. He squeezed my hand. I cried more, he cried more.
Daddy looked at me and asked “where is everybody?”
“There’s no one left but me and you Daddy. Momma’s gone. Brother is gone.” He cried out loud then.
“unmunm take….nunm …me…out…and…dump………..”
“No Daddy, I’m not going to take you out and dump you.” He has always talked about when the time comes to just go dump him in the river….
I turned to get him more water. He refused the drink. “Daddy, you have to drink. You HAVE to.”
“I don’t want to.” Plain as day…
“If we don’t get some fluids in you, it won’t take but a few days, now come on drink.” He turned his head. I stopped with the water and returned to his bed side.
Daddy looked me straight in the eyes, reached up to take my hand again, and said “I want to kiss you.” Now I’m crying again. My Dad never showed any affection towards us kids, especially me. I leaned over the rail and kissed him on the forehead, still sobbing.
When we remade eye contact he said “I want umnum kiss you.”
So I bent over and pecked the tip of his nose. He grabbed onto my shoulder to pull me down for a lip to lip kiss.
I know that in later stages of dementia, that Lewys may do inappropriate sexual things; and now that I clearly really do look like my mother, what he was wanting was a wet smooch.
I allowed our lips to touch, but recoiled as rapidly as a double barrel shotgun, with both barrels blazing. He seemed a bit shocked, looking at me puzzled. I supposed he wondered if he would ever get another chance for a last kiss with Momma.
2 comments:
pearose said...
Wow Pauline. Lewy's emotions are raging full force, it seems.
Sundowning is also a common theme for dementia patients. Based on the research I have found, I really think it goes back to our nomadic forefathers who had to set up camp by sundown. We've only had electricity for a short while in the human experience, so night time and darkness has been associated with uneasiness throughout our human history.
I met an Australian writer online, who was dying of cancer at the time, who had lived with the natives (Aboriginees) of Australia. Based on my question left on the Anthropology board on this very subject, he took it upon himself to do some research with the tribes he knew and asked about Sundowning amongst those who still live without electricity. Yes, they still experience a sense of unease at night with angst regarding unknown predators. Work (based on survival needs) have to be completed by sundown.
Agitation is a part of sundowning. Every day, right before Sundown, begin to play music to engage his senses and brain function. His brain is no longer functioning normally and again, the 'survival functions' are located in the brain stem - often one of the first areas of the brain in Alzheimer's Disease to become affected (not sure about LBD - does anyone know that?).
Because of the inability to rationalize the unease they are feeling, agitation and fear become overwhelming behaviors. Engaging the senses with music, a familiar taste or a familiar 'feel' (like Tweak) will have a calming influence on them. They are still connected with reality through those familiar sensing experiences (long term memories). Anything associated with short term memory will most likely have been damaged by the ravages associated with Dementia. So, keep the long term memory sensory experiences available in some form (and you will have to decide which is the most effective in your case), so there can be a connection with reality.
Smell is the last sense to be reduced by age, so find a smell that will engage his olfactory senses. The senses involving smell are postiively associated with memories (and long term memories are the ones that last the longest, obviously).
I am so sorry about what happened. He's in there, as you well know. The rest is the disease. Depression, as a comorbid factor with dementia, can do an overwhelming amount of damage as well. You are dealing with his depression, too. The hardest aspect of this for you is that you may want to do the fighting for him, since he may be giving up. It's a tough situation.
Take some time for yourself today. Hey - gorgeous weather out there (if you are a duck or turtle!), but this rain will bring us a green Spring.
There are many in support of you. Don't ever think that you are alone. We may not be there in person, but you have the respect of many and you probably have no clue why. Your strength and willingness to take on this huge responsibility is nothing short of extraordinary.
3rd Wife said...
Sundowning is also common in children. I experienced it with both of mine, but particularly with my oldest who was the colicky one. It is hard to deal with, no doubt. I remember the feelings of hopelessness because I knew that nothing I did was going to make a difference.
So...I say again, don't let guilt be a part of your feelings. Quite easy for me to say, I know. But you truly are going the extra 100 miles and doing all that you can do.
Your post made me cry today. Very touching and very raw.
New Fixture- a poem for Lewy
We have a new fixture in the living room.
His name is Lewy.
We watch over him as he sleeps.
He moves has hands and contorts his face.
We wonder what he is seeing,
What he is hearing,
What he is feeling?
We don’t know.
He is in the room when people visit.
But not part of the conversation.
Often he is the topic of conversation
But not part of the conversation.
We glad that he is here
But
Should one be in the room and not be part of the conversation?
No
One should not.
Then again, no one gave you a choice did they Lewy?
No. I thought not.
So hang out as long as you want to Lewy.
We’ll be here.
3 comments:
Stella said...
Such bittersweet thoughtful words. Rest well, Mr Lewy, you have loved ones with you.
kddove said...
Lewy Can You Hear Me?
Can you feel me near you?
Lewy can you feel me?
Can I help to cheer you.
Lewy
Lewy
Lewy
Daddy...
Hubbie said... Oh kddove, that is too good. You and I must hang out more.
His name is Lewy.
We watch over him as he sleeps.
He moves has hands and contorts his face.
We wonder what he is seeing,
What he is hearing,
What he is feeling?
We don’t know.
He is in the room when people visit.
But not part of the conversation.
Often he is the topic of conversation
But not part of the conversation.
We glad that he is here
But
Should one be in the room and not be part of the conversation?
No
One should not.
Then again, no one gave you a choice did they Lewy?
No. I thought not.
So hang out as long as you want to Lewy.
We’ll be here.
3 comments:
Stella said...
Such bittersweet thoughtful words. Rest well, Mr Lewy, you have loved ones with you.
kddove said...
Lewy Can You Hear Me?
Can you feel me near you?
Lewy can you feel me?
Can I help to cheer you.
Lewy
Lewy
Lewy
Daddy...
Hubbie said... Oh kddove, that is too good. You and I must hang out more.
The Great Lava Flow
Daddy slept all day. After yesterday I was grateful for this sleeping. I don’t know if I should wake him up to give him drugs or if he’s better off without all that crap in his system. I have to wake him to feed him. We were able to get most of a yogurt cup, ½ of and egg, and a little chocolate ice cream. All those together were maybe 6 oz. of food for the day. He’s taking in less fluid too. Sucking was successful, only once today. Other wise we are using an eye dropper or a Nyquil cup to give him fluids.
There was the required cleaning up after the diarrhea. I got his bottom cleaned, and the catheter tube cleaned, and had the clean sheets and pads rolled under the dirty sheets and pads. Almost done. I turned to get the cream to smear on his butt to prevent rash and help protect the sore developing in his lower spine area. As I turned back to Lewy, the great lava flow began, and as much as my initial reaction was to consider plugging the hole, my fear of the consequences of doing so, froze me in place to watch this massive oozing forth.
All over the clean and the dirty linens.
Hubbie continued to hold him on to Lewy's side while I went for more rags, more soapy water, and more linens.
Again I had completed the whole procedure, and he did it again.
The first time I cussed a bit about it. This time I cried about it. All there was to do was start over again. I went through a roll and a half of toilet paper, 6 pans of hot water, and 3 different wash cloths.
Thankfully this time he was done. We rolled him over to a more comfortable position and started the bed rolling device. It hums ever so often. The foot pump clicks and hums all the time.
Lewy cannot raise his head. When I look into his half open eyes there is no life to see. They are grey and cloudy now. After waking him to feed him, he became agitated again and started pulling off his clothes and the covers. I didn’t want to, but I gave him some of the meds to calm him down.
Hopefully he will sleep until morning.
3 comments:
pearose said...
I'm so sorry that you're having to deal with this situation. Maybe when his foot heals a little more, he'll feel better and the need for meds will be less. Hmmm...do you have any fleece blankets? Since they are washable, they may be worth a try as a cover. The material will keep him warm and won't fold around him like other materials, lightening the pressure he may feel on his skin. But then again, late stage dementia and the tossing of covers and clothes is fairly normal.
On the bright side, Spring is almost here. Gardening will help you release some of the tension buildup due to caregiving. And, you can open your windows for some fresh, flowery scent-filled breezes to air out your home.
Happy St. Patty's Day! Pinch Hubbie for me if he's not wearing anything green. Aw heck, pinch him anyway. :)
Stella said...
You are not hearing from me but I watch for and read every report about Mr Lewy. May you continue to have strength and good health to continue the care. I know you have the love to go on. Anger is good... be angry at the disease and what it is doing to you and Mr Lewy. perhaps it will help get the stress out. May Hubbie continue to fill your home with sassiness. You couldn't do this without that rascal.
oldfriend said...
Bless you my friend, there is light at the end of this walk.
There was the required cleaning up after the diarrhea. I got his bottom cleaned, and the catheter tube cleaned, and had the clean sheets and pads rolled under the dirty sheets and pads. Almost done. I turned to get the cream to smear on his butt to prevent rash and help protect the sore developing in his lower spine area. As I turned back to Lewy, the great lava flow began, and as much as my initial reaction was to consider plugging the hole, my fear of the consequences of doing so, froze me in place to watch this massive oozing forth.
All over the clean and the dirty linens.
Hubbie continued to hold him on to Lewy's side while I went for more rags, more soapy water, and more linens.
Again I had completed the whole procedure, and he did it again.
The first time I cussed a bit about it. This time I cried about it. All there was to do was start over again. I went through a roll and a half of toilet paper, 6 pans of hot water, and 3 different wash cloths.
Thankfully this time he was done. We rolled him over to a more comfortable position and started the bed rolling device. It hums ever so often. The foot pump clicks and hums all the time.
Lewy cannot raise his head. When I look into his half open eyes there is no life to see. They are grey and cloudy now. After waking him to feed him, he became agitated again and started pulling off his clothes and the covers. I didn’t want to, but I gave him some of the meds to calm him down.
Hopefully he will sleep until morning.
3 comments:
pearose said...
I'm so sorry that you're having to deal with this situation. Maybe when his foot heals a little more, he'll feel better and the need for meds will be less. Hmmm...do you have any fleece blankets? Since they are washable, they may be worth a try as a cover. The material will keep him warm and won't fold around him like other materials, lightening the pressure he may feel on his skin. But then again, late stage dementia and the tossing of covers and clothes is fairly normal.
On the bright side, Spring is almost here. Gardening will help you release some of the tension buildup due to caregiving. And, you can open your windows for some fresh, flowery scent-filled breezes to air out your home.
Happy St. Patty's Day! Pinch Hubbie for me if he's not wearing anything green. Aw heck, pinch him anyway. :)
Stella said...
You are not hearing from me but I watch for and read every report about Mr Lewy. May you continue to have strength and good health to continue the care. I know you have the love to go on. Anger is good... be angry at the disease and what it is doing to you and Mr Lewy. perhaps it will help get the stress out. May Hubbie continue to fill your home with sassiness. You couldn't do this without that rascal.
oldfriend said...
Bless you my friend, there is light at the end of this walk.
When I Die, I May Not Go to Heaven
Hubbie here.
Those of you who are very observant may have noticed the dog lying at Lewy’s feet in the picture. They are both watching something. We don’t know what. To be fair witness (something we may discuss at a future time) we don’t know for a fact that they are watching the same thing. But the dog is Tweak. She is Lewy’s buddy. I’m betting that they are watching the same thing.
Tweak arrived as a puppy three or four years after Daddy came to live with us. Pauline could tell you for sure, I’m lousy with dates and anything else that requires a memory. She is named after a Southpark character, a young man named Tweek whose parents run a coffee shop. He drinks lots of coffee and therefore twitches a lot. Pauline and I are either charmed or lucky because very often the names we choose for pets turn out to be very accurate and descriptive. Miss Kitty was bossy little cat who had to have her own way. Mr. Dillon was an old fart who tolerated no one except Miss Kitty, who would kick his ass. Festus is the old fart of a cat still limping around here. Festus never met a critter he didn’t like. Like Lewy, Festus sleeps 90% of the day, but when he is awake you need to be tending to him. He howls and if you don’t pay attention to him, if you don’t let him out to pee, then he will pee in the house. Just like Lewy. As for Tweak………….well………….she tweaks. You know that weird little spasm/jump you sometimes get when you are just about to fall asleep? Well. She does that…………..she tweaks. When she is lying in your lap and you are stroking clean soft fur it is cute; in bed at 2:00 AM it ain’t cute.
Tweak is part long haired dachshund and all mutt. Mutts are the best dogs; I’ll debate you on that question any day. The fun-fact-to-know-and-tell about dachshunds is that they watch things and they notice when something is different. It sounds weird but it appears to be true. Tweak knows both our cars and the truck; still, if we leave a car parked in the drive instead of in the garage where it should be, she goes nuts. (Hey, we’re American’s…..three people………three vehicles………it’s the law……..so what if Lewy shouldn’t drive……….he still has a license!!)………..Where was I?.........Oh yeah………….It seems that Tweak is smart enough to recognize the car when we arrive home but dumb enough to perceive the same car as a threat if we leave it in the driveway. This trait made for an interesting event.
We have had a lot of stormy/windy weather of late. During one of the storms about a month ago a large blue tarpaulin that had been on the carport blew out into the field. Combine my natural laziness with Pauline’s preoccupation of late and ……….well…………..we didn’t retrieve it. A few more windy days and the tarp blew into the woods.
I informed Pauline that the tarp had gone on vacation. Problem solved.
Turned out I was right, it was just a vacation. A few windy days later the tarp reappeared in the field. Then it blew into the flower bed in front of the house. It blew close enough for a small dog to see.………………….Tweak went nuts……………………and it wasn’t like greeting an old friend………….it was like “OMG!! WE ARE UNDER ATTACK!!”
Lewy was good news and bad news to Tweak. The good news was they became best buddies. The bonding did not happen though until Tweak got big enough to jump up in Lewy’s lap. As soon as she learned that little trick, Lewy became the “safe zone”. If she did something deserving of punishment and we caught her, she ran straight to Lewy and the safety of his lap. Then they would both give you that “Who me?” look.
“Yes. I see that you are angered at the pile of poo in the floor but as you can see that I am now under the protection of Lewy.”
“Ugh……mmm……..What?........I was sleeping!............What’s the matter?............Dog?............This dog?...........She is just here keeping me warm……….What?...................Well it could have been that dog that lives in the elevator.”
As is most always the case in life the equation had to be balanced.
While a twenty-five pound dog leaping from your lap to challenge a marauding tarpaulin might be of no consequence to a young highly toned person like yourself, when your skin is in its late seventies the claws tend to be an issue. Tweak was leaving significant holes in Lewy’s arms even as she attempted to protect him from all evils. And so it was that we took Tweak to Doc Coles to have her claws removed. There are pros and cons to this procedure and we shall not debate them here. A wonderful friend, who, because she is a wonderful friend, shall remain nameless, spent a drunken hour one night berating Pauline about the declawfication. Yes, if Tweak was a human it would be cruel…………but she is not………she is better. Anyway, without her claws, she did not hurt her friend and protector Lewy as she strove to protect him. She might leap out at the Giant Blue Tarp Monster but, with only fur on her feet, Lewy’s arms remained undamaged. That way he could keep her in his lap. That way they could stay buddies. Put Lewy in his recliner, a blanket on top of him, flip the lever to raise his feet and lean back. Do all that and Tweak will be right there. She’d jump up in his lap and they would both snooze away. Some times he’d pet her. Sometimes she’d lick his hand. Sometimes she kept watch while he slept. Sometimes he watched TV while she slept. Mostly they just cuddled and slept.
So I watched closely the other day when Lewy made it home from the hospital. We put the dogs on the back porch so that they would not be underfoot while we were getting Lewy settled. The ambulance drivers brought Lewy in. The new hospital bed was not here yet so we had to put Lewy in his recliner. Pauline has told you the story. The doctors had Lewy pretty much “downed out” (“drugged up” if you prefer) for the trip home. We thank them for that kindness. After we got Lewy cleaned and settled, Pauline went to walk among her flowers. I sat down to see what Alton Brown was going to teach me.
Tweak came in and looked up at Lewy in his chair. She seemed to know that something was different. She didn’t run and jump in his lap. Lewy reached out his hand and Tweak walked over and put her head in his hand. His arm was stiff and awkward but he managed to pat her on the head. She licked his hand and then curled up at his feet, sharing the blanket that spread over the floor beneath his chair.
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers
2 comments:
3rd Wife said...
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers
Me too.
oldfriend said...
oh, I'm believing there are dogs in heaven, Hubbie,and I don't even like dogs...it's the cats I'll be glad are there!
Those of you who are very observant may have noticed the dog lying at Lewy’s feet in the picture. They are both watching something. We don’t know what. To be fair witness (something we may discuss at a future time) we don’t know for a fact that they are watching the same thing. But the dog is Tweak. She is Lewy’s buddy. I’m betting that they are watching the same thing.
Tweak arrived as a puppy three or four years after Daddy came to live with us. Pauline could tell you for sure, I’m lousy with dates and anything else that requires a memory. She is named after a Southpark character, a young man named Tweek whose parents run a coffee shop. He drinks lots of coffee and therefore twitches a lot. Pauline and I are either charmed or lucky because very often the names we choose for pets turn out to be very accurate and descriptive. Miss Kitty was bossy little cat who had to have her own way. Mr. Dillon was an old fart who tolerated no one except Miss Kitty, who would kick his ass. Festus is the old fart of a cat still limping around here. Festus never met a critter he didn’t like. Like Lewy, Festus sleeps 90% of the day, but when he is awake you need to be tending to him. He howls and if you don’t pay attention to him, if you don’t let him out to pee, then he will pee in the house. Just like Lewy. As for Tweak………….well………….she tweaks. You know that weird little spasm/jump you sometimes get when you are just about to fall asleep? Well. She does that…………..she tweaks. When she is lying in your lap and you are stroking clean soft fur it is cute; in bed at 2:00 AM it ain’t cute.
Tweak is part long haired dachshund and all mutt. Mutts are the best dogs; I’ll debate you on that question any day. The fun-fact-to-know-and-tell about dachshunds is that they watch things and they notice when something is different. It sounds weird but it appears to be true. Tweak knows both our cars and the truck; still, if we leave a car parked in the drive instead of in the garage where it should be, she goes nuts. (Hey, we’re American’s…..three people………three vehicles………it’s the law……..so what if Lewy shouldn’t drive……….he still has a license!!)………..Where was I?.........Oh yeah………….It seems that Tweak is smart enough to recognize the car when we arrive home but dumb enough to perceive the same car as a threat if we leave it in the driveway. This trait made for an interesting event.
We have had a lot of stormy/windy weather of late. During one of the storms about a month ago a large blue tarpaulin that had been on the carport blew out into the field. Combine my natural laziness with Pauline’s preoccupation of late and ……….well…………..we didn’t retrieve it. A few more windy days and the tarp blew into the woods.
I informed Pauline that the tarp had gone on vacation. Problem solved.
Turned out I was right, it was just a vacation. A few windy days later the tarp reappeared in the field. Then it blew into the flower bed in front of the house. It blew close enough for a small dog to see.………………….Tweak went nuts……………………and it wasn’t like greeting an old friend………….it was like “OMG!! WE ARE UNDER ATTACK!!”
Lewy was good news and bad news to Tweak. The good news was they became best buddies. The bonding did not happen though until Tweak got big enough to jump up in Lewy’s lap. As soon as she learned that little trick, Lewy became the “safe zone”. If she did something deserving of punishment and we caught her, she ran straight to Lewy and the safety of his lap. Then they would both give you that “Who me?” look.
“Yes. I see that you are angered at the pile of poo in the floor but as you can see that I am now under the protection of Lewy.”
“Ugh……mmm……..What?........I was sleeping!............What’s the matter?............Dog?............This dog?...........She is just here keeping me warm……….What?...................Well it could have been that dog that lives in the elevator.”
As is most always the case in life the equation had to be balanced.
While a twenty-five pound dog leaping from your lap to challenge a marauding tarpaulin might be of no consequence to a young highly toned person like yourself, when your skin is in its late seventies the claws tend to be an issue. Tweak was leaving significant holes in Lewy’s arms even as she attempted to protect him from all evils. And so it was that we took Tweak to Doc Coles to have her claws removed. There are pros and cons to this procedure and we shall not debate them here. A wonderful friend, who, because she is a wonderful friend, shall remain nameless, spent a drunken hour one night berating Pauline about the declawfication. Yes, if Tweak was a human it would be cruel…………but she is not………she is better. Anyway, without her claws, she did not hurt her friend and protector Lewy as she strove to protect him. She might leap out at the Giant Blue Tarp Monster but, with only fur on her feet, Lewy’s arms remained undamaged. That way he could keep her in his lap. That way they could stay buddies. Put Lewy in his recliner, a blanket on top of him, flip the lever to raise his feet and lean back. Do all that and Tweak will be right there. She’d jump up in his lap and they would both snooze away. Some times he’d pet her. Sometimes she’d lick his hand. Sometimes she kept watch while he slept. Sometimes he watched TV while she slept. Mostly they just cuddled and slept.
So I watched closely the other day when Lewy made it home from the hospital. We put the dogs on the back porch so that they would not be underfoot while we were getting Lewy settled. The ambulance drivers brought Lewy in. The new hospital bed was not here yet so we had to put Lewy in his recliner. Pauline has told you the story. The doctors had Lewy pretty much “downed out” (“drugged up” if you prefer) for the trip home. We thank them for that kindness. After we got Lewy cleaned and settled, Pauline went to walk among her flowers. I sat down to see what Alton Brown was going to teach me.
Tweak came in and looked up at Lewy in his chair. She seemed to know that something was different. She didn’t run and jump in his lap. Lewy reached out his hand and Tweak walked over and put her head in his hand. His arm was stiff and awkward but he managed to pat her on the head. She licked his hand and then curled up at his feet, sharing the blanket that spread over the floor beneath his chair.
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers
2 comments:
3rd Wife said...
If there are no dogs in Heaven, then when I die I want to go where they went. -Will Rogers
Me too.
oldfriend said...
oh, I'm believing there are dogs in heaven, Hubbie,and I don't even like dogs...it's the cats I'll be glad are there!
Lewy, Hang On
Saturday was a difficult day for Lewy. He was hallucinating when I got up and went to check on him first thing in the morning, and the hallucinations continued throughout the morning. Normally Lewy sleeps but today he was straining to hold onto the bed rails. He kept saying he had to hold onto them or they would fall off.
Hubbie and I rolled him onto his back thinking maybe that would stop the vise grip on the rails. Indeed it did for a while. Instead of the rails Lewy started pulling off his bed gown and the covers, exposing his naked body.
I kept trying to cover him back up, and he would keep pulling them off. Hubbie took the gown and wadded up in Lewy’s hands thinking that would give him something to grab onto – hopefully then the covers would stay on.
This worked for a bout 5 minutes then Lewy was twisting the gown into the covers and rolling them up like a giant cigar. He kept complaining of pain, but we couldn’t figure out where, so I gave him the pain medication, later some anti –anxiety pill, then an anti spasm drug, nothing was working to settle him down.
I don’t know why I thought perhaps he is just cold and is not able to figure it out, so I put the electric blanket on him and turned it on high. At first he was trying to throw it off but in a few minutes settled down to just clinching his fists on the railings. Enough time had elapsed that I could give him some more meds to calm him down. After a while, this round of drugs settled him into a tortured sleep of straining to hang on to something.
As for me, I had to remove and replace the wound sponge and pump device on his left foot. It certainly does not look nice and neat the way the nurses do it, but the suction is working and the alarm finally quit going off. It only took about an hour to get myself together to jump in there and find the stuff and force myself to do it. It wasn’t so bad…
But I gotta say, the diarrhea is really tough. First of all it takes both of us to roll him about to clean him. I’m just learning this layering of pads and sheet rolling techniques. And I have to go through a mental checklist of things required to do the job. You have to have everything ready to go. So for each bowel movement, its not just Daddy to clean, but 2 pee pads, a sheet, probably a blanket and definitely his gown. Two extra loads of the nastiest laundry you can imagine everyday. Actually four loads, because I have to run them through twice.
Lewy has begun to refuse food. He thinks we are trying to kill him. I can deal with Lewy thinking I’m doing mean things behind his back, but it hurts when you see and hear it come out of your Dad’s mouth; especially right after you’ve cleaned his butt.
1 comments:
pearose said...
Caregiving for dementia patients is the toughest job in the world.
Typically, dementia patients do remove their clothes or anything that is touching their skin. As you both know, aging skin becomes thin which decreases the ability to regulate heat/cold. It also becomes more sensitive to pressure created by the weight of clothes, blankets or any other material. The lack of ability to rationalize the weighted material, with the damage being done to the brain stem (the location of basic fear in the brain) and other brain areas adds to their need to 'get it off.' Apparently, Tweak's presence has not become a bother on his skin ... yet.
Research CLEARLY shows that the attention given by a dog or cat to an ill person, especially the elderly, adds tremendous value to their lives. The ability to love and be loved unconditionally is as good as it gets. I'm so glad Tweak and Lewy are buddies. I'd rather have my own fingernails dug out than do that to my own dogs, but you make a great case - Lewy and Tweak need each other and the claws would create a major wound problem.
Besides, mine are way too big to jump in my lap, unless I'm sleeping. Then, body slamming me to get a really close sleeping position seems acceptable - to them only. My sore ribs....
Hubbie and I rolled him onto his back thinking maybe that would stop the vise grip on the rails. Indeed it did for a while. Instead of the rails Lewy started pulling off his bed gown and the covers, exposing his naked body.
I kept trying to cover him back up, and he would keep pulling them off. Hubbie took the gown and wadded up in Lewy’s hands thinking that would give him something to grab onto – hopefully then the covers would stay on.
This worked for a bout 5 minutes then Lewy was twisting the gown into the covers and rolling them up like a giant cigar. He kept complaining of pain, but we couldn’t figure out where, so I gave him the pain medication, later some anti –anxiety pill, then an anti spasm drug, nothing was working to settle him down.
I don’t know why I thought perhaps he is just cold and is not able to figure it out, so I put the electric blanket on him and turned it on high. At first he was trying to throw it off but in a few minutes settled down to just clinching his fists on the railings. Enough time had elapsed that I could give him some more meds to calm him down. After a while, this round of drugs settled him into a tortured sleep of straining to hang on to something.
As for me, I had to remove and replace the wound sponge and pump device on his left foot. It certainly does not look nice and neat the way the nurses do it, but the suction is working and the alarm finally quit going off. It only took about an hour to get myself together to jump in there and find the stuff and force myself to do it. It wasn’t so bad…
But I gotta say, the diarrhea is really tough. First of all it takes both of us to roll him about to clean him. I’m just learning this layering of pads and sheet rolling techniques. And I have to go through a mental checklist of things required to do the job. You have to have everything ready to go. So for each bowel movement, its not just Daddy to clean, but 2 pee pads, a sheet, probably a blanket and definitely his gown. Two extra loads of the nastiest laundry you can imagine everyday. Actually four loads, because I have to run them through twice.
Lewy has begun to refuse food. He thinks we are trying to kill him. I can deal with Lewy thinking I’m doing mean things behind his back, but it hurts when you see and hear it come out of your Dad’s mouth; especially right after you’ve cleaned his butt.
1 comments:
pearose said...
Caregiving for dementia patients is the toughest job in the world.
Typically, dementia patients do remove their clothes or anything that is touching their skin. As you both know, aging skin becomes thin which decreases the ability to regulate heat/cold. It also becomes more sensitive to pressure created by the weight of clothes, blankets or any other material. The lack of ability to rationalize the weighted material, with the damage being done to the brain stem (the location of basic fear in the brain) and other brain areas adds to their need to 'get it off.' Apparently, Tweak's presence has not become a bother on his skin ... yet.
Research CLEARLY shows that the attention given by a dog or cat to an ill person, especially the elderly, adds tremendous value to their lives. The ability to love and be loved unconditionally is as good as it gets. I'm so glad Tweak and Lewy are buddies. I'd rather have my own fingernails dug out than do that to my own dogs, but you make a great case - Lewy and Tweak need each other and the claws would create a major wound problem.
Besides, mine are way too big to jump in my lap, unless I'm sleeping. Then, body slamming me to get a really close sleeping position seems acceptable - to them only. My sore ribs....
Bring it On
There are just not enough good words to say about the hospice people. Everybody, down to the truck drivers are the nicest people. Perhaps they take some joy in knowing how much they are appreciated….at least I hope they know…
Lewy is sleeping.
It’s amazing how a trauma like surgery propels Lewys to the next stage. A week ago he was with us a little bit here and there. Now; Not so much…In this week and a half, he can no longer walk (for whatever reason); he has to be spoon fed instead of feeding himself; he went from constipated to incontinent; from peeing in his cup, to being catheterized; from toddling about to bed ridden.
If it were not for the prospect that Lewy’s legs would have had to have been amputated, there is no way, and with 20/20 hindsight I would put Lewy under sedation. I don’t know if it was the drugs, the trauma of surgery, the strange environment of the hospital, or all three, but keep your Lewys out of the hospital if you can.
When Daddy went in the hospital last spring, he came out much worse than when he went in. It was the same, less walking, less lucid talking, more sleeping, less eating.
Lewys; I believe don’t take to institutional care.
Hubbie here. Today’s lesson will be about government in action.
First off, I am not the political wing of this family. Pauline is politically active but, being an intelligent human, the actions of those that run the system baffle, frustrate and disappoint her. (Pauline, if you feel I have misstated please insert your words here………………………….). OK, so on with my oratory (yeah I know, but I read aloud as I type).
I always vote. It preserves my right to bitch about the government. But I don’t want to run for office. I don’t want to be president. I want to be king. But don’t worry, I only want the position for a day or two. Well, to be truthful, I want to be king for a day or two twice.
If I were King of the Forest:
1. Every political contribution would have to be matched by a social contribution. Equal money to a certified charity or similar organization to make the world a better place. Any candidate mentioning how much their campaign has raised for charity will be fined $10 million dollars and be forced to tell a joke of his own making on national television. On the second offense you must have sex with either Ronald or Nancy Regan. Yes I know he’s dead. You can have your choice.
2. Every LBO and hostile take over and company merger would be subject to impact fees. To help the displaced (i.e. Fired employees) and to limit the amount of money one can make from buying a company just to suck the juice out. I’ll call it the Vampire Elimination Act.
3. There would be a “Where in the World is Your Congressman or Senator?” website. They would be on TV 24/7. Hey, it’s a 24/7 job. We want to know where you are and there are a lot of us.
4. Any woman found running a “puppy mill” or similar operation, will be forced to breed children for adoption for the rest of her life. When she is no longer able to bear children she will join the men found guilty of this offense in cleaning the cages of animals waiting for adoption. And I want to see those cages REALLY clean. Housing would be provided in the “Mill Runners Kennel”. Free dry food and cold showers. (I really hate these people)
5. Frequent Fliers, like myself, would have secret airports. We would have no rules on the plane. Leave your tray up or down; we don’t care. I might allow tourists on the plane provided they had completed “how to fly training”. They must learn proper bag size, how airplane seats are numbered, how to get your ass out of the aisle and into the seat and how to stand up-grab your bag-and walk off a plane in 30 seconds. Children less than six years old will be allowed only on planes having a “nursery room” like churches have. If your child over six can’t behave on a plane for two hours then you are banished forever from Frequent Flier Flights.
6. My sixth rule is the one that requires a second term. I decree that the country set a course to develop a “stupid bomb”, one that would cause stupid people to drop dead; no pain, no warning, just drop dead. I know it sounds harsh and I have friends that will die if such a bomb is dropped but it must be done. A few years ago I thought only 15% or so if the people in the world were stupid. Today that number must be well over 25%. If by the time I am elected to a second term as King of the Forest that percentage still stands at 25% then I drop the bomb. Sorry but it must be done. Of course if you disagree you don’t have to vote for me.
In the words of Bill Cosby, “I told you that story to tell you this one”.
Pauline has touched a bit on how nice and friendly and efficient and helpful and kind and well organized and caring and full of knowledge and willing to share that knowledge the people are that we have met from “Alive Hospice”. They are amazing. They all know what they are doing. They are all willing to teach you what they know so that you can do it if they are not here. They are on duty 24/7 to help you in case you forgot what they taught you. They are angels.
For example….
I took off early today so I could watch some of the SEC Tournament games, the Tennessee game. And it was a good thing; they probably would not have won without my calming influence. Shortly after I arrived, the hospice nurse arrived. She checked and cleaned both of Lewy’s heels. She prepared and set a new dressing. She checked the sore on Lewy’s butt. She showed us how to get a pad under Lewy as he lay in bed and then how to use that pad to manipulate Lewy in his bed. She checked and adjusted his catheter. She explained to how best lock it in place and how to route the tubing. She knew what she was doing and she did it very well then she went a bit beyond to help out someone that could use the help.
She works for Alive Hospice.
She is typical of the people we have encountered in this organization.
Alive Hospice is funded by Medicare.
If this is government funded socialized medicine then please;…… bring it on.
1 comments:
pearose said...
Drugs administered in the hospital for pain (like morphine) have a HUGE impact on the elderly and increase disorientation. I hope Lewy becomes more lucid soon. And, I'm glad to know that Hospice is helping you out. It is such a wonderful organization.
Hubbie -
As far as I'm concerned, you are a King and the sociologist in me loves the idea of the social contributions. :) And the treatment of puppy mill creeps that abuse the animals. :)) And the Vampire Elimination Act (despite the fact that some companies don't need to be merged in a hostile takeover to suck the blood out of their own company. :)))
Not liking the idea of trying to find Bob Corker. His voice still gives me nightmares from the midterm election. I don't want to find him as much as he doesn't want to be found - we get along better that way.
Now Hubbie, we both know you're too pretty to fly - that's why you have problems on planes. The other passengers are jealous of you.
Thanks for being there for Tennessee. I have no doubt that your influence helped.
Lewy is sleeping.
It’s amazing how a trauma like surgery propels Lewys to the next stage. A week ago he was with us a little bit here and there. Now; Not so much…In this week and a half, he can no longer walk (for whatever reason); he has to be spoon fed instead of feeding himself; he went from constipated to incontinent; from peeing in his cup, to being catheterized; from toddling about to bed ridden.
If it were not for the prospect that Lewy’s legs would have had to have been amputated, there is no way, and with 20/20 hindsight I would put Lewy under sedation. I don’t know if it was the drugs, the trauma of surgery, the strange environment of the hospital, or all three, but keep your Lewys out of the hospital if you can.
When Daddy went in the hospital last spring, he came out much worse than when he went in. It was the same, less walking, less lucid talking, more sleeping, less eating.
Lewys; I believe don’t take to institutional care.
Hubbie here. Today’s lesson will be about government in action.
First off, I am not the political wing of this family. Pauline is politically active but, being an intelligent human, the actions of those that run the system baffle, frustrate and disappoint her. (Pauline, if you feel I have misstated please insert your words here………………………….). OK, so on with my oratory (yeah I know, but I read aloud as I type).
I always vote. It preserves my right to bitch about the government. But I don’t want to run for office. I don’t want to be president. I want to be king. But don’t worry, I only want the position for a day or two. Well, to be truthful, I want to be king for a day or two twice.
If I were King of the Forest:
1. Every political contribution would have to be matched by a social contribution. Equal money to a certified charity or similar organization to make the world a better place. Any candidate mentioning how much their campaign has raised for charity will be fined $10 million dollars and be forced to tell a joke of his own making on national television. On the second offense you must have sex with either Ronald or Nancy Regan. Yes I know he’s dead. You can have your choice.
2. Every LBO and hostile take over and company merger would be subject to impact fees. To help the displaced (i.e. Fired employees) and to limit the amount of money one can make from buying a company just to suck the juice out. I’ll call it the Vampire Elimination Act.
3. There would be a “Where in the World is Your Congressman or Senator?” website. They would be on TV 24/7. Hey, it’s a 24/7 job. We want to know where you are and there are a lot of us.
4. Any woman found running a “puppy mill” or similar operation, will be forced to breed children for adoption for the rest of her life. When she is no longer able to bear children she will join the men found guilty of this offense in cleaning the cages of animals waiting for adoption. And I want to see those cages REALLY clean. Housing would be provided in the “Mill Runners Kennel”. Free dry food and cold showers. (I really hate these people)
5. Frequent Fliers, like myself, would have secret airports. We would have no rules on the plane. Leave your tray up or down; we don’t care. I might allow tourists on the plane provided they had completed “how to fly training”. They must learn proper bag size, how airplane seats are numbered, how to get your ass out of the aisle and into the seat and how to stand up-grab your bag-and walk off a plane in 30 seconds. Children less than six years old will be allowed only on planes having a “nursery room” like churches have. If your child over six can’t behave on a plane for two hours then you are banished forever from Frequent Flier Flights.
6. My sixth rule is the one that requires a second term. I decree that the country set a course to develop a “stupid bomb”, one that would cause stupid people to drop dead; no pain, no warning, just drop dead. I know it sounds harsh and I have friends that will die if such a bomb is dropped but it must be done. A few years ago I thought only 15% or so if the people in the world were stupid. Today that number must be well over 25%. If by the time I am elected to a second term as King of the Forest that percentage still stands at 25% then I drop the bomb. Sorry but it must be done. Of course if you disagree you don’t have to vote for me.
In the words of Bill Cosby, “I told you that story to tell you this one”.
Pauline has touched a bit on how nice and friendly and efficient and helpful and kind and well organized and caring and full of knowledge and willing to share that knowledge the people are that we have met from “Alive Hospice”. They are amazing. They all know what they are doing. They are all willing to teach you what they know so that you can do it if they are not here. They are on duty 24/7 to help you in case you forgot what they taught you. They are angels.
For example….
I took off early today so I could watch some of the SEC Tournament games, the Tennessee game. And it was a good thing; they probably would not have won without my calming influence. Shortly after I arrived, the hospice nurse arrived. She checked and cleaned both of Lewy’s heels. She prepared and set a new dressing. She checked the sore on Lewy’s butt. She showed us how to get a pad under Lewy as he lay in bed and then how to use that pad to manipulate Lewy in his bed. She checked and adjusted his catheter. She explained to how best lock it in place and how to route the tubing. She knew what she was doing and she did it very well then she went a bit beyond to help out someone that could use the help.
She works for Alive Hospice.
She is typical of the people we have encountered in this organization.
Alive Hospice is funded by Medicare.
If this is government funded socialized medicine then please;…… bring it on.
1 comments:
pearose said...
Drugs administered in the hospital for pain (like morphine) have a HUGE impact on the elderly and increase disorientation. I hope Lewy becomes more lucid soon. And, I'm glad to know that Hospice is helping you out. It is such a wonderful organization.
Hubbie -
As far as I'm concerned, you are a King and the sociologist in me loves the idea of the social contributions. :) And the treatment of puppy mill creeps that abuse the animals. :)) And the Vampire Elimination Act (despite the fact that some companies don't need to be merged in a hostile takeover to suck the blood out of their own company. :)))
Not liking the idea of trying to find Bob Corker. His voice still gives me nightmares from the midterm election. I don't want to find him as much as he doesn't want to be found - we get along better that way.
Now Hubbie, we both know you're too pretty to fly - that's why you have problems on planes. The other passengers are jealous of you.
Thanks for being there for Tennessee. I have no doubt that your influence helped.
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