This morning Lewy slept late again while I sat in the next room working on the computer. There’s a point in dealing with Lewy where you become grateful for his sleeping. That’s the same point the guilt sets in, because in your heart, you want Lewy to go away. Then you feel even worse.
When Lewy finally decided to wake up at 12:30, he began yelling for me.
“You ready to get up?”
“Where have you been? I’ve been ringing that bell all night trying to get someone in here!”
“Daddy, I’ve been sitting right here since 7:30. All I’ve been hearing is you snoring.”
“But why don’t you come?”
“Because you dreamed it Lewy. You’ve been asleep all morning.”
“I rang that bell all night. I don’t know why you let me just lay here like this.”
“Daddy, there ain’t no bell.”
Lewy had this look of absolute abandonment on his face. He has become childlike emotionally. Everything is a personal slight; we are ignoring him and not tending to his needs. Certainly I cannot make Lewy’s pain go away, and I can’t make him walk without freezing every second or third step. And no, I can’t stay up 24 hours a day.
I’ve thought all along that until Lewy gets to where he can’t remember me, or he can’t get up and walk enough to get himself from chair to chair that I could manage to take care of him. I’m seriously wondering if I can make it that long.
Last Spring Lewy was in a nursing home for a week after having a nasty urinary tract infection. By the end of that week, Lewy was talking to the medical equipment lined up in the corridors. He even sneaked up on an IV monitor and said “Boo!” He turned to me and giggled like a school girl.
I got him out of there the next day. If he had been there the three more weeks he was scheduled for, I can’t help but think he would have been nigh on to gone.
Therein lies the rub. I know when (if) we put Lewy in a nursing home that he will regress rapidly. There won’t be anyone there to tell him what is a hallucination and what is real. Not that he always believes that there really is not a backhoe in the living room, or that there is no one in his bed. But there are times when he says “That’s some of my people.”
Lewy is still in there from time to time. Today he stayed awake for a few hours, and shuffled around the pool table twice for exercise. A very good day all round.
No, I’m not ready to give up or give in.
Don’t worry Lewy; I’m not going to get rid of you.
Pauline
1 comment:
kddove said...
Very sad... like you said, it's almost the same with pets. My old dog had another seizure this morning and every time, I think it's over.
5 minutes later, she hopped out of my lap and ran to the door.
How do you know WHEN it's the time?
It’s Goober Time In Tennessee
Hubbie here but this one may not be so funny. Pauline has written about her first time having to give Lewy a sponge bath. We both knew it was only a matter of time but dealing with a close relative in such intimate ways is not something for which you can really prepare yourself.
I don’t know if it’s the same for everyone but I remember when I was a kid and the kitchen sink got plugged I thought we should just get a new sink. No way in hell would anyone with a brain put their hand down that nasty hole. Then you grow up and the sink belongs to you. As a kid I figured that was how you knew that you were grown up. You put your hand down the sink and pulled out that wad of grease and hair with your bare hand. About the time I graduated from high school I found out there were worse places you might have to put your hand.
My senior year in high school my paternal grandfather had a stroke. Paternal decided that his kid’s should stay at his parent’s house to help take care of his father. Being the oldest sibling I got primary granddaddy duty. This lead to an intimate knowledge of granddaddy doody. I had to walk him to the toilet, sit him down and, when he was done, wipe his ass. I did my best to avoid the other appendages but, well, some things are inevitable. In Lewy’s case, he at least knows when he has taken a dump. After I wiped Granddaddy’s ass he would always look back and me and ask “Much action?”. Some days the answer was “Not too much.” Some days it was, “Oh my god. You couldn’t feel THAT coming out?”
Pauline is getting to have such fun later in her life. From where I sit, I’d say doing it that way is much harder. It is obviously much more difficult to deal with when it is a parent as opposed to a grandparent. And when the parent is of the opposite sex!........Jeeze! It’s amazing that your brain doesn’t just shut down. I heard a story on the radio the other day about a man whose mother is totally dependent on him. The only thing she can do is spoon soup into her mouth. He must bathe her and deal with all toileting. All I could think was, “Dude you are a great man!” I would do that if I had to but both of my sisters would have to be really dead first. There are just some things you should not have to see, much less touch.
So my question is this; If learning to deal with putting your hand in that nasty drain and pull out the slime inside makes you an adult, then what does being able to clean the genitals of your opposite sex parent make you? For god’s sake it ought to get you something! Some folks get to go thru life without having to deal with such a thing. Some folks simply refuse to do it thus forcing someone else to shoulder the responsibility. Collectively the latter are known as assholes. My guess is that fulfilling this particular obligation qualifies you as a fully fledged human being.
If by some freak chance God does actually exist and she, for any reason, denies you access to heaven after you have performed this act of love then my guess is that he refused to wipe his mother’s ass when his turn came. Pauline has proven her love.
For Pauline and all of the rest of you out there who deal with things you would never wish on another person I bow with deep respect and offer all the good vibes I can muster. If the time comes and no one else will wipe your ass, give me a call. (Mom, if you are reading this please call Linda or Ann first.)
Comments:
Denise said...
Yes, it does get you something; you're definitely going to Heaven.
February 17, 2008 1:07 PM
I don’t know if it’s the same for everyone but I remember when I was a kid and the kitchen sink got plugged I thought we should just get a new sink. No way in hell would anyone with a brain put their hand down that nasty hole. Then you grow up and the sink belongs to you. As a kid I figured that was how you knew that you were grown up. You put your hand down the sink and pulled out that wad of grease and hair with your bare hand. About the time I graduated from high school I found out there were worse places you might have to put your hand.
My senior year in high school my paternal grandfather had a stroke. Paternal decided that his kid’s should stay at his parent’s house to help take care of his father. Being the oldest sibling I got primary granddaddy duty. This lead to an intimate knowledge of granddaddy doody. I had to walk him to the toilet, sit him down and, when he was done, wipe his ass. I did my best to avoid the other appendages but, well, some things are inevitable. In Lewy’s case, he at least knows when he has taken a dump. After I wiped Granddaddy’s ass he would always look back and me and ask “Much action?”. Some days the answer was “Not too much.” Some days it was, “Oh my god. You couldn’t feel THAT coming out?”
Pauline is getting to have such fun later in her life. From where I sit, I’d say doing it that way is much harder. It is obviously much more difficult to deal with when it is a parent as opposed to a grandparent. And when the parent is of the opposite sex!........Jeeze! It’s amazing that your brain doesn’t just shut down. I heard a story on the radio the other day about a man whose mother is totally dependent on him. The only thing she can do is spoon soup into her mouth. He must bathe her and deal with all toileting. All I could think was, “Dude you are a great man!” I would do that if I had to but both of my sisters would have to be really dead first. There are just some things you should not have to see, much less touch.
So my question is this; If learning to deal with putting your hand in that nasty drain and pull out the slime inside makes you an adult, then what does being able to clean the genitals of your opposite sex parent make you? For god’s sake it ought to get you something! Some folks get to go thru life without having to deal with such a thing. Some folks simply refuse to do it thus forcing someone else to shoulder the responsibility. Collectively the latter are known as assholes. My guess is that fulfilling this particular obligation qualifies you as a fully fledged human being.
If by some freak chance God does actually exist and she, for any reason, denies you access to heaven after you have performed this act of love then my guess is that he refused to wipe his mother’s ass when his turn came. Pauline has proven her love.
For Pauline and all of the rest of you out there who deal with things you would never wish on another person I bow with deep respect and offer all the good vibes I can muster. If the time comes and no one else will wipe your ass, give me a call. (Mom, if you are reading this please call Linda or Ann first.)
Comments:
Denise said...
Yes, it does get you something; you're definitely going to Heaven.
February 17, 2008 1:07 PM
Good Bye Yellow Brick Road
Last night when it was time to get Lewy ready for bed, we did the normal things. I helped him stand up from the recliner. Held his hands until he steadied himself, handed him his cane and we started our ever so slow toddle to the bathroom.
While Lewy was doing his business, I was putting on clean sheets fresh out of the dryer and new pee pads. Three layers of them.
Hubbie, who is quite the audiophile, was playing some Elton John.
I had finished making up Lewy’s bed when an uncontrollable urge came over me to dance to the music. I’m not much of a dancer. My dancing would be best described as the way hippies who were high on LSD used to dance in the 60’s. You know, arms all over…they look like they think they’re floating…mostly goofy looking...that’s my dance style.
On the other hand, Lewy was not so long ago an accomplished ball room dancer.
I was doing my arm waving thing to the music when Lewy appeared from the bathroom. What caught my attention was in my peripheral vision, Lewy was waving his arms. Only he actually seemed to be in rhythm to the music. He almost skipped a step or two.
What normally is a torturously long time from door to bedside, took 3 seconds- tops. Lewy was dancing. Elton John was giving him the urge to move. We held hands and twisted our hips, and did all sorts of dancy things, when Lewy pushed my hand back. (His dancing signal that I should move backwards). Lewy dropped my hand and continued to dance, more and more looking like he was mocking my hippie style.
He did motions of washing his hands and slinging off the excess water. A little hula started, then at the end of the song, perfectly in time with Good Bye Yellow Brick Road, he put his left hand cupped under his right arm and made arm farts to the music.
Hubbie and I were rolling. Lewy was laughing out loud.
Then the music stopped. And then Lewy stopped.
Everything was back to normal.
Pauline
2 comments:
Anonymous said...
But for a few brief moments your dad reached out to you. Oh what a wonderful memory to cling to.
Sammie Jo Mitchell said...
yeah.
While Lewy was doing his business, I was putting on clean sheets fresh out of the dryer and new pee pads. Three layers of them.
Hubbie, who is quite the audiophile, was playing some Elton John.
I had finished making up Lewy’s bed when an uncontrollable urge came over me to dance to the music. I’m not much of a dancer. My dancing would be best described as the way hippies who were high on LSD used to dance in the 60’s. You know, arms all over…they look like they think they’re floating…mostly goofy looking...that’s my dance style.
On the other hand, Lewy was not so long ago an accomplished ball room dancer.
I was doing my arm waving thing to the music when Lewy appeared from the bathroom. What caught my attention was in my peripheral vision, Lewy was waving his arms. Only he actually seemed to be in rhythm to the music. He almost skipped a step or two.
What normally is a torturously long time from door to bedside, took 3 seconds- tops. Lewy was dancing. Elton John was giving him the urge to move. We held hands and twisted our hips, and did all sorts of dancy things, when Lewy pushed my hand back. (His dancing signal that I should move backwards). Lewy dropped my hand and continued to dance, more and more looking like he was mocking my hippie style.
He did motions of washing his hands and slinging off the excess water. A little hula started, then at the end of the song, perfectly in time with Good Bye Yellow Brick Road, he put his left hand cupped under his right arm and made arm farts to the music.
Hubbie and I were rolling. Lewy was laughing out loud.
Then the music stopped. And then Lewy stopped.
Everything was back to normal.
Pauline
2 comments:
Anonymous said...
But for a few brief moments your dad reached out to you. Oh what a wonderful memory to cling to.
Sammie Jo Mitchell said...
yeah.
Lewy's Pee-ness
As the normal day turns, getting up to wet beds and a wet Lewy is now an everyday event. Until recently, this was no so bad. All it meant was undressing Lewy, dressing Lewy, and doing the associated laundry. Lewy could manage to get in the shower, take a mostly adequate bath and get out.
Some months ago, I got “over” touching fresh pee. In the beginning, I wore latex gloves and held any soiled clothes out at arms length to be sure I did not become contaiminated by the toxic waste. Now, I stick my hands in there, get my job done, and then run for the sink to clean up.
Lewy unfortunately has become much less mobile resulting in his inability to get into the shower. Of course, there is the first time that this happens you are not prepared for the immediate ramifications of this new downturn.
And so it was, I sent Lewy to shower. He tried his best to get in but could not. He exhausted himself trying to lift his leg over the side, and his rational mind is impaired to the point that the concept of knowing where to sit, is rarely grasped.
Realizing that Lewy was in trouble, Hubbie and I went in to help him. Our Idea was to lift him onto the shower seat, but Lewy decided against it. Unfortunately this decision came in mid lift. Our only way to bail out was to push Lewy’s 200 pound body onto the toilet to prevent him from landing on the floor.
“AAAHHHH!!!!”
My heart is pounding, I’m breathing like I had run a quarter mile….What Daddy? What’s wrong?
“AAAUUGHH!!!! AAAAUUUGHHH!!!!!! MY NUTTS!!! MY NUTTS!!!!”
Normally I try to avoid looking at my Dad’s private parts. It’s just too creepy. But you can’t not look when he’s screaming about his testicles. I bent over and for the first time in my life, I realized that there was truly a good reason to be grateful to be female.
The way we pushed him back wards onto the toilet seat had raked his testicles up and over the seat. They were being squeezed so tight my mind flashed to a mammogram with my boob stuck in a vise.
We grabbed him under his armpits (not recommended) and lifted him thinking that the boys would drop down into the tank. The boys disagreed. All we managed to do was squeeze them a bit tighter.
Lewy is turning three shades of red. “AAAAAWWWWWWW!!!!”
We tried to get him standing, but leaning forward put more pressure where it was least desired.
“AAWWWOOOOOOOOO!!!!” Hubbie and looked at each other After 31 years of marriage, you really don’t have to say anything to communicate. The boys had to be pushed back into the toilet and it was my job.
Now how do you touch your Dad’s business? Couldn’t it just be another pee filled diaper? Do I put on gloves? “AAAWAWOOO!” Oh Jeez….normally I’m a “decider”; - not this time…What to do? How to do it? I looked at Hubbie for guidance and got the “this one’s all yours” look.
Then a stroke of genius! “Hubbie, come lift” I grabbed Daddy’s other arm. “Daddy, when we lift, you push the boys back into the toilet.”
Success!
Whew! That was close.
Now I get to think about what’s coming. Oh my.
Pauline
Some months ago, I got “over” touching fresh pee. In the beginning, I wore latex gloves and held any soiled clothes out at arms length to be sure I did not become contaiminated by the toxic waste. Now, I stick my hands in there, get my job done, and then run for the sink to clean up.
Lewy unfortunately has become much less mobile resulting in his inability to get into the shower. Of course, there is the first time that this happens you are not prepared for the immediate ramifications of this new downturn.
And so it was, I sent Lewy to shower. He tried his best to get in but could not. He exhausted himself trying to lift his leg over the side, and his rational mind is impaired to the point that the concept of knowing where to sit, is rarely grasped.
Realizing that Lewy was in trouble, Hubbie and I went in to help him. Our Idea was to lift him onto the shower seat, but Lewy decided against it. Unfortunately this decision came in mid lift. Our only way to bail out was to push Lewy’s 200 pound body onto the toilet to prevent him from landing on the floor.
“AAAHHHH!!!!”
My heart is pounding, I’m breathing like I had run a quarter mile….What Daddy? What’s wrong?
“AAAUUGHH!!!! AAAAUUUGHHH!!!!!! MY NUTTS!!! MY NUTTS!!!!”
Normally I try to avoid looking at my Dad’s private parts. It’s just too creepy. But you can’t not look when he’s screaming about his testicles. I bent over and for the first time in my life, I realized that there was truly a good reason to be grateful to be female.
The way we pushed him back wards onto the toilet seat had raked his testicles up and over the seat. They were being squeezed so tight my mind flashed to a mammogram with my boob stuck in a vise.
We grabbed him under his armpits (not recommended) and lifted him thinking that the boys would drop down into the tank. The boys disagreed. All we managed to do was squeeze them a bit tighter.
Lewy is turning three shades of red. “AAAAAWWWWWWW!!!!”
We tried to get him standing, but leaning forward put more pressure where it was least desired.
“AAWWWOOOOOOOOO!!!!” Hubbie and looked at each other After 31 years of marriage, you really don’t have to say anything to communicate. The boys had to be pushed back into the toilet and it was my job.
Now how do you touch your Dad’s business? Couldn’t it just be another pee filled diaper? Do I put on gloves? “AAAWAWOOO!” Oh Jeez….normally I’m a “decider”; - not this time…What to do? How to do it? I looked at Hubbie for guidance and got the “this one’s all yours” look.
Then a stroke of genius! “Hubbie, come lift” I grabbed Daddy’s other arm. “Daddy, when we lift, you push the boys back into the toilet.”
Success!
Whew! That was close.
Now I get to think about what’s coming. Oh my.
Pauline
Advice From a Friend
.
.
.
Those of you who are dealing with Lewy Body Dementia realize that Pauline did not start this blog early in Lewy’s trip down the crooked brick road. He is well into the D part of LBD. Some time ago we were only dealing with one imaginary person in our house. It had, in fact, been going on for a while before I found out about it. Of course, in typical husband fashion I found out the hard way by putting my foot in my mouth.
One evening Pauline was fixing dinner. Lewy was at his normal post, sitting on his stool at the kitchen counter. I had just changed clothes after a long day of hunting and gathering and was pouring myself a beer. Lewy was consulting Pauline about the eighteen year old girl that had been sleeping in his bed. Being the smart ass I am, I looked Lewy in the eye and said “You’re sleeping with an eighteen year old?!” Lewy got this big goofy grin on his face and began to mumble a bit. “Damn!” I continued. Just as I was about to ask if the girl slept in the nude I caught Pauline’s eye. I’ve seen that look before. It was time to shut my ass up. Later when we were alone, it was explained to me that Lewy was very disturbed by the presence of the girl in his bed. He was deeply afraid that he would be accused of statutory rape. He was really worried about what to do about the girl. Jeez, I love it when I’m stupid. It’s such a boost to my self-esteem.
Sometime later I related this story to Nifer. Nifer is one of our oldest and best friends. She was, at the time, the sole provider for her father. He did not have LBD. He was just a crotchety old beer drinking sailor. I liked him a lot, rest his soul.
Anyway, I told Nifer about the girl in Lewy’s bed and how it bothered him.
Without missing a beat Nifer looked me in the eye and said, “Tell him she’s 21.”
Ockham’s razor. The simplest answers are always the best.
Hubbie
.
.
Those of you who are dealing with Lewy Body Dementia realize that Pauline did not start this blog early in Lewy’s trip down the crooked brick road. He is well into the D part of LBD. Some time ago we were only dealing with one imaginary person in our house. It had, in fact, been going on for a while before I found out about it. Of course, in typical husband fashion I found out the hard way by putting my foot in my mouth.
One evening Pauline was fixing dinner. Lewy was at his normal post, sitting on his stool at the kitchen counter. I had just changed clothes after a long day of hunting and gathering and was pouring myself a beer. Lewy was consulting Pauline about the eighteen year old girl that had been sleeping in his bed. Being the smart ass I am, I looked Lewy in the eye and said “You’re sleeping with an eighteen year old?!” Lewy got this big goofy grin on his face and began to mumble a bit. “Damn!” I continued. Just as I was about to ask if the girl slept in the nude I caught Pauline’s eye. I’ve seen that look before. It was time to shut my ass up. Later when we were alone, it was explained to me that Lewy was very disturbed by the presence of the girl in his bed. He was deeply afraid that he would be accused of statutory rape. He was really worried about what to do about the girl. Jeez, I love it when I’m stupid. It’s such a boost to my self-esteem.
Sometime later I related this story to Nifer. Nifer is one of our oldest and best friends. She was, at the time, the sole provider for her father. He did not have LBD. He was just a crotchety old beer drinking sailor. I liked him a lot, rest his soul.
Anyway, I told Nifer about the girl in Lewy’s bed and how it bothered him.
Without missing a beat Nifer looked me in the eye and said, “Tell him she’s 21.”
Ockham’s razor. The simplest answers are always the best.
Hubbie
I want to go to the Hospital
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.
.
This is one of those mornings. The kind that I wish I could go back to bed and start the day all over again.
It’s Saturday. For most; their day off. For me; not so much. Although Hubbie is very good about most things, the one thing he does not understand is how to be f****** quiet. I can normally get up and have a bit of time, lately several hours, before Lewy starts complaining.
This morning, I walked the dogs, and as soon as I opened the door to come back inside, Lewy is hollering “Pauline” Pauline, “PAULINE!!!!!” Each time louder and louder.
I mentioned before I don’t have children. This constant PAY ATTENTION TO ME--- RIGHT NOW….NOW….NOW, is driving me crazy. Would some one please just shoot me? My head is splitting open. My neck is so stiff I can’t turn my head.
I went to see what the problem with Lewy was. “Unmunum take unmmm num hospital.” “What’s the matter Daddy?” “Uunnuummnumnumn” . “I can’t understand what you are saying.” “I want to unumnumm to the hospital.” Why Lewy? Why do you want to go to the hospital?
“I want to go to the hospital!!!”…..Why, what’s the matter?”
“I’m hurtin’. I want to go to the hospital.”
“No, Daddy, I’m not taking you to the hospital. You are fine. Do you want to get up or stay in bed a while?”
“I want to go see the doctor.”
“It’s Saturday, Daddy, they aren’t there.”
“Well you can call ‘em can’t you?”
“No Daddy, it’s Saturday, they are not there.”
“Well call them anyway.”
I started to say no, they are not there again, but what is the point? I’ve been trying to train myself to not attempt reason or logic with him because Lewy just doesn’t have that ability any more. Oh and don’t dare ask a question that requires more thought than "what do you want?”.
Maybe I’m just trying not to talk to him at all.
The circular “conversations”, the people, all the people…Oh how I wish they would go away.
I cut Lewy’s diapers off of him and got him in to the bathroom to pee. He did his business and started out of the bathroom. (A good day for walking; much better than yesterday). Lewy finally made the long toddle into his bedroom to have me pull off his pee shirt, wipe him down, and dress him.
“Where do you want me?”
Sit on the bed so I can put your pants on you.
“Can’t you do that with me here?”
“No Daddy, I can’t put your pants on you while you are standing up.”
“Where do you want me?”
“I.....want.... you.... to .....sit .....on.... the ....bed.... so.... I ....can .....put .....your ....pants ....on.... you”.
By now, I’m sitting on Lewy’s side chair with my head in my hands crying. I’m loosing it. I can’t control myself anymore. The feeling is so very similar to the way I felt back in college when I was teetering on having a nervous break down. Of all the things in my life, that was the scariest. I knew I was on the edge of a mental abyss; always fighting to not fall into the canyon.
I imagine that's where Lewy is, just fighting to stay "here".
Hubbie apparently could tell from the other room that something was amiss. He came into Lewy’s room, took the diapers out of my hand and started trying to get Lewy to the bed. I had to get up and leave the room.
As for me, I’m sitting here at the computer sobbing. I can’t help it. I’m trying not to. But it doesn’t stop; I just keep on crying, and crying.
After Hubbie got Lewy dressed, he came in to offer comfort and tell me everything will be OK. Bless him again and again.I have to go into the office to work now.
It’s amazing how the office has become a treasured place to go. A place with normal people. Even if it is Saturday.
.
.
This is one of those mornings. The kind that I wish I could go back to bed and start the day all over again.
It’s Saturday. For most; their day off. For me; not so much. Although Hubbie is very good about most things, the one thing he does not understand is how to be f****** quiet. I can normally get up and have a bit of time, lately several hours, before Lewy starts complaining.
This morning, I walked the dogs, and as soon as I opened the door to come back inside, Lewy is hollering “Pauline” Pauline, “PAULINE!!!!!” Each time louder and louder.
I mentioned before I don’t have children. This constant PAY ATTENTION TO ME--- RIGHT NOW….NOW….NOW, is driving me crazy. Would some one please just shoot me? My head is splitting open. My neck is so stiff I can’t turn my head.
I went to see what the problem with Lewy was. “Unmunum take unmmm num hospital.” “What’s the matter Daddy?” “Uunnuummnumnumn” . “I can’t understand what you are saying.” “I want to unumnumm to the hospital.” Why Lewy? Why do you want to go to the hospital?
“I want to go to the hospital!!!”…..Why, what’s the matter?”
“I’m hurtin’. I want to go to the hospital.”
“No, Daddy, I’m not taking you to the hospital. You are fine. Do you want to get up or stay in bed a while?”
“I want to go see the doctor.”
“It’s Saturday, Daddy, they aren’t there.”
“Well you can call ‘em can’t you?”
“No Daddy, it’s Saturday, they are not there.”
“Well call them anyway.”
I started to say no, they are not there again, but what is the point? I’ve been trying to train myself to not attempt reason or logic with him because Lewy just doesn’t have that ability any more. Oh and don’t dare ask a question that requires more thought than "what do you want?”.
Maybe I’m just trying not to talk to him at all.
The circular “conversations”, the people, all the people…Oh how I wish they would go away.
I cut Lewy’s diapers off of him and got him in to the bathroom to pee. He did his business and started out of the bathroom. (A good day for walking; much better than yesterday). Lewy finally made the long toddle into his bedroom to have me pull off his pee shirt, wipe him down, and dress him.
“Where do you want me?”
Sit on the bed so I can put your pants on you.
“Can’t you do that with me here?”
“No Daddy, I can’t put your pants on you while you are standing up.”
“Where do you want me?”
“I.....want.... you.... to .....sit .....on.... the ....bed.... so.... I ....can .....put .....your ....pants ....on.... you”.
By now, I’m sitting on Lewy’s side chair with my head in my hands crying. I’m loosing it. I can’t control myself anymore. The feeling is so very similar to the way I felt back in college when I was teetering on having a nervous break down. Of all the things in my life, that was the scariest. I knew I was on the edge of a mental abyss; always fighting to not fall into the canyon.
I imagine that's where Lewy is, just fighting to stay "here".
Hubbie apparently could tell from the other room that something was amiss. He came into Lewy’s room, took the diapers out of my hand and started trying to get Lewy to the bed. I had to get up and leave the room.
As for me, I’m sitting here at the computer sobbing. I can’t help it. I’m trying not to. But it doesn’t stop; I just keep on crying, and crying.
After Hubbie got Lewy dressed, he came in to offer comfort and tell me everything will be OK. Bless him again and again.I have to go into the office to work now.
It’s amazing how the office has become a treasured place to go. A place with normal people. Even if it is Saturday.
Digging for Diamonds
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.
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Lewy slept again today until 2PM. This is no doubt the next big down turn in his health. The cruelest part of LBD to me is how it is like a stock market ticker; it bounces along for a while, and then takes a turn for the better. Optimism sets in, and as sure as the market corrects, so does the LBD. Unlike the stock market, I’ve yet to see one of these downturns return to the previous norm.
A slow stair step down.
When I got him up, he was soaked in pee and stinking from just plain old B.O. He had a shower yesterday, and most everyday, because he wets the bed most every night. He smells like his mother did when the dementia set in on her. A foul two week old warm vegetable soup smell is the only way I could describe it.
Lewy was disoriented, complaining of hip pain. He’s been complaining about hip pain so much, you’d think he had a fall, but no, this just came along with sleeping until after noon. The hardest thing for me is when Lewy’s Parkinson’s is acting up. He freezes, stares at the floor for 15 minutes or so then rocks, slowly, back and forth, back and forth. I’ve tried to not assist him anymore than necessary, thinking that it is better for him to manage what he can. Up until now, that had worked pretty well. Now every step has to be made holding one or both of his hands. He hasn’t gotten up unassisted for maybe 5 days now.
Lewy was standing in the middle of the bedroom, staring at the floor, and talking about how the pipes had broken during the night and flooded his room.
Lewy, you need to take a bath……………Lewy…………Lewy you need a bath.
“Well I’m standin’ here and I don’t smell me. You just always want to criticize.”
"Believe me Lewy; I can smell you, from in the hall."
I took Lewy’s hand and walked him into the bathroom. Several attempts were made to get him on the shower seat, but today, it wasn’t going to happen.
I had put it off as long as I possibly could, but it was time for me to give Lewy a bath. Rather than put him in the shower, we agreed it would be best for him to sit on the commode. I striped him, ran some soapy hot water and scrubbed him down.
Scrub, scrub, rinse, rinse........
Not exactly how I had envisioned my life.
After a good towel drying, Lewy latched on to the grab bar across from him, struggled to stand up, but almost completely hunched over and asked “Are there any dumplin’s in there?”
What a red letter day!! I not only gave Lewy his (my first) sponge bath, I gloved up, and went digging. Fortunately, no diamonds were found. I could never have imagined that I would be washing Lewy’s cheeks, much less the dark side….
When Lewy was finally clean, dressed, and at the kitchen counter stool, I did the normal ritual of pills and asking; “What do you want to eat?”
Lewy sat there with his face almost touching the countertop. Lewy?.....He looked up and said “That man the other day said Sonny (my brother) was dead”.
“He is Lewy. He died before Momma did.”
Lewy has fixated on who all is dead for the past few days. Then just like the other night, he looked me straight in the eyes and asked again if he was dead.
"You think you’d be eating biscuits and bacon if you were dead?”
“Probably.”
No Lewy, you aren’t dead yet.
“I’m not?”
No. Eat your bacon.
.
.
Lewy slept again today until 2PM. This is no doubt the next big down turn in his health. The cruelest part of LBD to me is how it is like a stock market ticker; it bounces along for a while, and then takes a turn for the better. Optimism sets in, and as sure as the market corrects, so does the LBD. Unlike the stock market, I’ve yet to see one of these downturns return to the previous norm.
A slow stair step down.
When I got him up, he was soaked in pee and stinking from just plain old B.O. He had a shower yesterday, and most everyday, because he wets the bed most every night. He smells like his mother did when the dementia set in on her. A foul two week old warm vegetable soup smell is the only way I could describe it.
Lewy was disoriented, complaining of hip pain. He’s been complaining about hip pain so much, you’d think he had a fall, but no, this just came along with sleeping until after noon. The hardest thing for me is when Lewy’s Parkinson’s is acting up. He freezes, stares at the floor for 15 minutes or so then rocks, slowly, back and forth, back and forth. I’ve tried to not assist him anymore than necessary, thinking that it is better for him to manage what he can. Up until now, that had worked pretty well. Now every step has to be made holding one or both of his hands. He hasn’t gotten up unassisted for maybe 5 days now.
Lewy was standing in the middle of the bedroom, staring at the floor, and talking about how the pipes had broken during the night and flooded his room.
Lewy, you need to take a bath……………Lewy…………Lewy you need a bath.
“Well I’m standin’ here and I don’t smell me. You just always want to criticize.”
"Believe me Lewy; I can smell you, from in the hall."
I took Lewy’s hand and walked him into the bathroom. Several attempts were made to get him on the shower seat, but today, it wasn’t going to happen.
I had put it off as long as I possibly could, but it was time for me to give Lewy a bath. Rather than put him in the shower, we agreed it would be best for him to sit on the commode. I striped him, ran some soapy hot water and scrubbed him down.
Scrub, scrub, rinse, rinse........
Not exactly how I had envisioned my life.
After a good towel drying, Lewy latched on to the grab bar across from him, struggled to stand up, but almost completely hunched over and asked “Are there any dumplin’s in there?”
What a red letter day!! I not only gave Lewy his (my first) sponge bath, I gloved up, and went digging. Fortunately, no diamonds were found. I could never have imagined that I would be washing Lewy’s cheeks, much less the dark side….
When Lewy was finally clean, dressed, and at the kitchen counter stool, I did the normal ritual of pills and asking; “What do you want to eat?”
Lewy sat there with his face almost touching the countertop. Lewy?.....He looked up and said “That man the other day said Sonny (my brother) was dead”.
“He is Lewy. He died before Momma did.”
Lewy has fixated on who all is dead for the past few days. Then just like the other night, he looked me straight in the eyes and asked again if he was dead.
"You think you’d be eating biscuits and bacon if you were dead?”
“Probably.”
No Lewy, you aren’t dead yet.
“I’m not?”
No. Eat your bacon.
Lewy and the Fillet McTurds
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.
.
Hubbie here and it’s been a most interesting weekend. Pauline has educated you on living with Lewy Body. I believe on at least one occasion she has mentioned dealing with Lewy’s shit. Literally. To be honest I don’t think the shit thing is a disease related thing.
Don’t all the elderly people you know seem to take an inordinate interest in their shit? Literally. Seriously, I’m getting on up there and the older I get the more attention I seem to pay to my solid emissions.
When you are little kid you dropping your load in the correct place at an opportune time was something you had to learn. You got rewarded for it. You got to sit on the big porcelain throne. You had to jump to get up there but at least the splash factor was better than that little plastic sauce pan set into the weird little chair. In your teen and young adult years it becomes a game. How long can I keep this turd going? Can I make two full loops around the bowl before it breaks? That wasn’t just me was it?
You have learned from Pauline that in Lewy’s case we can experience turds off exceptional girth. What she did not tell you is that we have also experienced turd plating. It appears that in Lewy’s world there is some weird Turd Network show called Iron Shit where aroma is worth 10 points, size is worth 10 points and presentation is worth 5 points.
Well, one weekend Lewy was apparently in a tight race with the Iron Shitter. Lewy’s turd aroma was “old conger de jour”. The size was the usually “Oh My God” portion. Now he had to go for maximum presentation points.Let’s go back to old people and bowels a’moving voices a’telling. The older we get, the more it seems to come up in conversation. The more it comes up the more graphic the details get.
In Lewy’s case it gets graphic. I mean really graphic. I mean ………….are you sitting down? Do you have some Pepto handy? OK. Here goes.
Lewy, in his mind, has occasional constipation.
In my mind, the fact that his toilet clogs once a week is evidence to the contrary but Lewy’s ass is connected to Lewy’s brains so my opinion is inconsequential. It seems, in fact, that Lewy feels that his ass must, on occasion be emptied manually. Trust me when I say that this concept has never occurred to you. This one has never occurred to Big Gay Al.
When Lewy feels constipated he asks for a tea spoon. Yeah. The long handled spoons.
Yeah……………… Long handled so you can guide it up your ass. Yeah……….…………….so you can scoop your shit out. Yeah, that’s what I said, ‘Scoop out your shit’. Welcome to our world. And let’s be really clear here, in Our World there is only one teaspoon. If you need to evenly distribute the ingredients in the iced tea you are going to drink then put your hand over the glass and shake it. For God’s sake don’t use the spoon!
Now comes the fun part. When Lewy scoops the shit out of his ass with the long handled tea spoon he doesn’t put it in the toilet. He molds the essence of turd into 4 ounce filets and plates them along the rim of the tub next to the commode. It really is a most fascinating thing. That is if you can get past the smell. Luckily for me Lewy is Pauline’s Dad. I only have to grade for presentation.
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Comments:
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Raffcons said...
I have not laughed so hard in a LONG time! Thank you .. nice to know I'm not the only one wondering how the shit got from you-know-where to god-knows-where. And great to know others living with Lewy can find the laughs in it -- we were starting to think there was ghoulishly wrong with us. Looking forward to future posts!
.
.
Hubbie here and it’s been a most interesting weekend. Pauline has educated you on living with Lewy Body. I believe on at least one occasion she has mentioned dealing with Lewy’s shit. Literally. To be honest I don’t think the shit thing is a disease related thing.
Don’t all the elderly people you know seem to take an inordinate interest in their shit? Literally. Seriously, I’m getting on up there and the older I get the more attention I seem to pay to my solid emissions.
When you are little kid you dropping your load in the correct place at an opportune time was something you had to learn. You got rewarded for it. You got to sit on the big porcelain throne. You had to jump to get up there but at least the splash factor was better than that little plastic sauce pan set into the weird little chair. In your teen and young adult years it becomes a game. How long can I keep this turd going? Can I make two full loops around the bowl before it breaks? That wasn’t just me was it?
You have learned from Pauline that in Lewy’s case we can experience turds off exceptional girth. What she did not tell you is that we have also experienced turd plating. It appears that in Lewy’s world there is some weird Turd Network show called Iron Shit where aroma is worth 10 points, size is worth 10 points and presentation is worth 5 points.
Well, one weekend Lewy was apparently in a tight race with the Iron Shitter. Lewy’s turd aroma was “old conger de jour”. The size was the usually “Oh My God” portion. Now he had to go for maximum presentation points.Let’s go back to old people and bowels a’moving voices a’telling. The older we get, the more it seems to come up in conversation. The more it comes up the more graphic the details get.
In Lewy’s case it gets graphic. I mean really graphic. I mean ………….are you sitting down? Do you have some Pepto handy? OK. Here goes.
Lewy, in his mind, has occasional constipation.
In my mind, the fact that his toilet clogs once a week is evidence to the contrary but Lewy’s ass is connected to Lewy’s brains so my opinion is inconsequential. It seems, in fact, that Lewy feels that his ass must, on occasion be emptied manually. Trust me when I say that this concept has never occurred to you. This one has never occurred to Big Gay Al.
When Lewy feels constipated he asks for a tea spoon. Yeah. The long handled spoons.
Yeah……………… Long handled so you can guide it up your ass. Yeah……….…………….so you can scoop your shit out. Yeah, that’s what I said, ‘Scoop out your shit’. Welcome to our world. And let’s be really clear here, in Our World there is only one teaspoon. If you need to evenly distribute the ingredients in the iced tea you are going to drink then put your hand over the glass and shake it. For God’s sake don’t use the spoon!
Now comes the fun part. When Lewy scoops the shit out of his ass with the long handled tea spoon he doesn’t put it in the toilet. He molds the essence of turd into 4 ounce filets and plates them along the rim of the tub next to the commode. It really is a most fascinating thing. That is if you can get past the smell. Luckily for me Lewy is Pauline’s Dad. I only have to grade for presentation.
--------
Comments:
--------
Raffcons said...
I have not laughed so hard in a LONG time! Thank you .. nice to know I'm not the only one wondering how the shit got from you-know-where to god-knows-where. And great to know others living with Lewy can find the laughs in it -- we were starting to think there was ghoulishly wrong with us. Looking forward to future posts!
Drowning on Air
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.
.
Today has been interesting. After getting back in the bed this morning, he had been sleeping until I went and woke him up at 2:30. I can tell that the Parkinson’s part is really starting to kick in on Lewy... He strangles on his own saliva and his breathing is loud and wheezy. It sounds like what I’ve imagined a death rattle to be like. Sort of drowning on air.
He was unresponsive when I spoke to him. Lewy was obviously alive, but not aware of anything it seemed. I touched him, called his name….no response. I finally shook him.
Lewy opened his eyes barely, and didn’t seem to know me or where he was. I asked if he wanted to get up, but no reply. So I got him up. We do this by me swinging his legs out to the floor and pulling his torso up to a sitting position.
OMG! As soon as he moved, the stench permeated everything. This was no ordinary pee smell. This was sickening. I handed him his cane and told him to go take a bath.
I striped the bed and carried the sheets, pee pads, and mattress cover straight to the laundry, and started the load. When I came back, Lewy was standing in the same spot. I took him by the hand and walked him to the bathroom. He has been taking his own baths, so I told him to go take one.
Once he was in the bathroom, I set about spraying air freshener. 1 ½ cans later, I can still pick out the strong pee odor. It is 15 degrees outside and I might break down and open the windows.Lewy is now sitting on the commode doing that wrestler high-pitched groan. I poked my head in to see if everything is alright and the blast from the now in the floor diaper…..OMG! No, OMG twice…my eyes started burning.
Lewy said he wasn’t going to take a bath. I got news for him, he either does, or I give him one. Up until now, he has not wanted me to see his privates, although, I seem to manage to everyday, so maybe …I hope will I hear water running soon.
Well, it seems bathing himself is not going to be “just go do it” any more. Lewy wasn’t able to figure out how to get in the shower. He had cold water running, no hot.
I went in and set the water temperature and turned on the shower. Tucked the curtain in, went back to work, on the other side of the bathroom wall.
Fortunately, for no particular reason, Hubbie came home early today. Just in time. Daddy turned off the water and hollered through the wall to come help. Lewy couldn’t stand up. Hubbie ended up in the tub with him, and I’m on the outside trying to lift him. We could get him up an inch or two, but he would not or could not get his legs under him. We had to let him drop back down to the shower seat and rethink the options.
We tried the second time, the third time. By then we were both out of breath trying to lift this 200+ pounds of dead weight. Then we tried rocking him. Half inch by half inch we rocked him over to the edge of the shower seat. Then we were able to pull his legs up and over the side of the tub. No easy task, when a person’s legs are stiff.
By now Hubbie had a bit more room to gain leverage, and I could reach Lewy better. We did one final big Heave Ho and got Lewy out enough to drop him slowly onto the commode seat, which is mere inches from the tub. We all had to rest for about 5 minutes.I toweled Lewy off, not that he was wet anymore, but never the less it seemed the thing to do, and put a sweat shirt on him.
After resting for a while, we got him standing, and shuffling his feet to start to get out of that tiny room.15 minutes later, we had him on his bed side putting on new diapers. He wanted to get up so we finished dressing him, gave him his pills, and walked him to his Lazy Boy, where he fell fast asleep.
That gave me time to wash all the sheets, pee pads, pajamas, and Lewy’s blanket, and get the bed remade before it was time to wake him up to go to bed.
.
.
Today has been interesting. After getting back in the bed this morning, he had been sleeping until I went and woke him up at 2:30. I can tell that the Parkinson’s part is really starting to kick in on Lewy... He strangles on his own saliva and his breathing is loud and wheezy. It sounds like what I’ve imagined a death rattle to be like. Sort of drowning on air.
He was unresponsive when I spoke to him. Lewy was obviously alive, but not aware of anything it seemed. I touched him, called his name….no response. I finally shook him.
Lewy opened his eyes barely, and didn’t seem to know me or where he was. I asked if he wanted to get up, but no reply. So I got him up. We do this by me swinging his legs out to the floor and pulling his torso up to a sitting position.
OMG! As soon as he moved, the stench permeated everything. This was no ordinary pee smell. This was sickening. I handed him his cane and told him to go take a bath.
I striped the bed and carried the sheets, pee pads, and mattress cover straight to the laundry, and started the load. When I came back, Lewy was standing in the same spot. I took him by the hand and walked him to the bathroom. He has been taking his own baths, so I told him to go take one.
Once he was in the bathroom, I set about spraying air freshener. 1 ½ cans later, I can still pick out the strong pee odor. It is 15 degrees outside and I might break down and open the windows.Lewy is now sitting on the commode doing that wrestler high-pitched groan. I poked my head in to see if everything is alright and the blast from the now in the floor diaper…..OMG! No, OMG twice…my eyes started burning.
Lewy said he wasn’t going to take a bath. I got news for him, he either does, or I give him one. Up until now, he has not wanted me to see his privates, although, I seem to manage to everyday, so maybe …I hope will I hear water running soon.
Well, it seems bathing himself is not going to be “just go do it” any more. Lewy wasn’t able to figure out how to get in the shower. He had cold water running, no hot.
I went in and set the water temperature and turned on the shower. Tucked the curtain in, went back to work, on the other side of the bathroom wall.
Fortunately, for no particular reason, Hubbie came home early today. Just in time. Daddy turned off the water and hollered through the wall to come help. Lewy couldn’t stand up. Hubbie ended up in the tub with him, and I’m on the outside trying to lift him. We could get him up an inch or two, but he would not or could not get his legs under him. We had to let him drop back down to the shower seat and rethink the options.
We tried the second time, the third time. By then we were both out of breath trying to lift this 200+ pounds of dead weight. Then we tried rocking him. Half inch by half inch we rocked him over to the edge of the shower seat. Then we were able to pull his legs up and over the side of the tub. No easy task, when a person’s legs are stiff.
By now Hubbie had a bit more room to gain leverage, and I could reach Lewy better. We did one final big Heave Ho and got Lewy out enough to drop him slowly onto the commode seat, which is mere inches from the tub. We all had to rest for about 5 minutes.I toweled Lewy off, not that he was wet anymore, but never the less it seemed the thing to do, and put a sweat shirt on him.
After resting for a while, we got him standing, and shuffling his feet to start to get out of that tiny room.15 minutes later, we had him on his bed side putting on new diapers. He wanted to get up so we finished dressing him, gave him his pills, and walked him to his Lazy Boy, where he fell fast asleep.
That gave me time to wash all the sheets, pee pads, pajamas, and Lewy’s blanket, and get the bed remade before it was time to wake him up to go to bed.
Up and Down the Drain Pipe
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.
.
.
Hubbie here again.
Today’s lesson from Lewy is about spatial relationships. Special spatial relationships. First some background info. Pauline and I are both architects. We also have a grand sense of irony because we live in a double wide mobile home. We have made significant improvements but in the end it is still a certified, down home, white trash double wide.
This is fine with Lewy because he used to sell trailers for a living. When no customers were around the business was known as Wobbly Box Sales Incorporated. So Lewy knows trailers.This weekend Lewy and I were watching the Food Network. I was being educated. He was trying to understand exactly why Alton Brown wanted him to make crepes. Lewy didn’t grasp the purpose of the crepes but he did like the fact that there was jelly involved in the filling.
Suddenly Lewy decided he had to get up so I came over to help him out of his recliner. Now like most elderly people our Lewy has a decreased sense of smell and therefore feels less inclined to bathe than you or I might. After all, they are probably not going out. They don’t smell anything. And getting yourself in an out of the shower when you are in your eighties is no small task. In this case, well………………let us say that Lewy had not had that particular urge in a few days. And he smelled like…………..well, like old people smell.
Why is that? What evolutionary purpose does that smell serve? Is that why the Native Americans left those unable to travel beside the trail? Do you suppose that when they left the old folks there that they made sure to turn upwind when they moved on?
There is a concept called “intellectual osmosis”. It was, as far as I know, developed by the great Gord. He wrote of it in The Book of Annoyances (www.actsofgord.com). When one finds one’s self involved in a conversation with an idiot one must explain to them that “I subscribe to the theory of intellectual osmosis. As such I must now cease our conversation and move away from you before my intelligence begins to drop.”
I am beginning to fear that there exists olfactory osmosis. How many times am I allowed to grasp Lewy under his arm before I begin to smell like my Aunt Ida’s house? The aunt that lived alone and had not opened a window in three years. We have plenty of that antiseptic hand cleaner but that smell has a much longer evolutionary history than those cleansers. But I digress…………Lewy decided it was time to get up. I grasped the arm and, as he rose, asked where we were headed. Lewy said that he had to get up and …………………………………get up and …………………get up and……………go down stairs. This was going to be an interesting proposition.
I , of course, reminded him that since we lived in a trailer going down stairs would put us under the house and suggested that it would be quite cold down there. Lewy agreed and suggested we go down stairs. (We have similar conversations a lot around here.) I explained that we had only the one floor and asked where he wanted to go.“Downstairs.”
“But Lewy there is no downstairs. We live in a double wide.”Lewy points toward the door to the toilet. “That the bathroom?”
“Yeah. That’s your bathroom.”
“Then we can climb down the pipes.”
.
.
.
Hubbie here again.
Today’s lesson from Lewy is about spatial relationships. Special spatial relationships. First some background info. Pauline and I are both architects. We also have a grand sense of irony because we live in a double wide mobile home. We have made significant improvements but in the end it is still a certified, down home, white trash double wide.
This is fine with Lewy because he used to sell trailers for a living. When no customers were around the business was known as Wobbly Box Sales Incorporated. So Lewy knows trailers.This weekend Lewy and I were watching the Food Network. I was being educated. He was trying to understand exactly why Alton Brown wanted him to make crepes. Lewy didn’t grasp the purpose of the crepes but he did like the fact that there was jelly involved in the filling.
Suddenly Lewy decided he had to get up so I came over to help him out of his recliner. Now like most elderly people our Lewy has a decreased sense of smell and therefore feels less inclined to bathe than you or I might. After all, they are probably not going out. They don’t smell anything. And getting yourself in an out of the shower when you are in your eighties is no small task. In this case, well………………let us say that Lewy had not had that particular urge in a few days. And he smelled like…………..well, like old people smell.
Why is that? What evolutionary purpose does that smell serve? Is that why the Native Americans left those unable to travel beside the trail? Do you suppose that when they left the old folks there that they made sure to turn upwind when they moved on?
There is a concept called “intellectual osmosis”. It was, as far as I know, developed by the great Gord. He wrote of it in The Book of Annoyances (www.actsofgord.com). When one finds one’s self involved in a conversation with an idiot one must explain to them that “I subscribe to the theory of intellectual osmosis. As such I must now cease our conversation and move away from you before my intelligence begins to drop.”
I am beginning to fear that there exists olfactory osmosis. How many times am I allowed to grasp Lewy under his arm before I begin to smell like my Aunt Ida’s house? The aunt that lived alone and had not opened a window in three years. We have plenty of that antiseptic hand cleaner but that smell has a much longer evolutionary history than those cleansers. But I digress…………Lewy decided it was time to get up. I grasped the arm and, as he rose, asked where we were headed. Lewy said that he had to get up and …………………………………get up and …………………get up and……………go down stairs. This was going to be an interesting proposition.
I , of course, reminded him that since we lived in a trailer going down stairs would put us under the house and suggested that it would be quite cold down there. Lewy agreed and suggested we go down stairs. (We have similar conversations a lot around here.) I explained that we had only the one floor and asked where he wanted to go.“Downstairs.”
“But Lewy there is no downstairs. We live in a double wide.”Lewy points toward the door to the toilet. “That the bathroom?”
“Yeah. That’s your bathroom.”
“Then we can climb down the pipes.”
When Did I Die?
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.
Last night as the soup we were going to have for dinner was warming up, Lewy woke up in his Lazy Boy and started his normal unintelligible mumbling. Hubbie, bless his heart, knew I was just worn out with Lewy, so he went to see what was up.
As normal Lewy was confused. He wasn’t real sure where he was or what was going on. He asked where I was; only he called me by my Mother’s name. He does this a lot, and has for all my life from time to time. I know he means me, and I just go with it. Unfortunately Hubbie was not so keen to this mis-calling of my name.
When Lewy asked Hubbie where Momma was, Hubbie said “She’s dead Lewy.” There was silence for 15 seconds or so, and then Lewy asked “When did this happen?” “Several years ago”. At this point, I knew I better get in there fast. I got up from my normal roosting spot at the computer and went in. When Lewy saw me, he burst into tears.
Daddy, I’m OK. I’m fine.
“When did you die?”
“I’m not dead Daddy; Hubbie thought you were asking about Momma. I’m fine”. By now Daddy was in full out loud crying with huge tears running down his face. He still seemed afraid of what was next.
“Well, when did I die?”
“You aren’t dead Daddy, you are fine, and I’m fine.”
“But where’s Momma?”
“She died almost eleven years ago, Daddy.” He started crying harder. He had apparently forgotten that Momma was gone. This was the first time I had ever seen him cry like this. In his old age he tears up occasionally when he thinks about WWII and friends he lost, but Lewy managed to hold it together when my brother died, when my niece, Lewy’s Grand Daughter died, and when Momma died. I know that he grieved, he just was raised to be a man and not to let it show.
I reached over to hug Daddy and tell him everything was OK. He put his arms around me and sobbed. For me, this is very difficult. As Lewy was reared to never show emotion, I’ve never been hugged (except for hellos and goodbyes when they lived in Florida) and I certainly have never heard “I love you” from my Dad. But at that moment, I felt loved. He was still so very upset that I was dead. At least I knew he cared about me. By now I was crying too.
Lewy then looked right at me and said “I didn’t know you were dead”.
We got him up to go sit at his spot at the kitchen counter to have his soup. He was OK for a few minutes, and then suddenly started crying again. “When did I die?”. Are we all dead?
No, Lewy not yet.
He cried the entire time he was having his soup and cornbread. Then, “What happened to Momma’s body?” “We cremated her and buried her ashes along side [my brother], and [his daughter.]”
“Good. That’s what Momma wanted.”
1 comment:
Hubbie said...
Wow. That was a tough one to read.
.
.
Last night as the soup we were going to have for dinner was warming up, Lewy woke up in his Lazy Boy and started his normal unintelligible mumbling. Hubbie, bless his heart, knew I was just worn out with Lewy, so he went to see what was up.
As normal Lewy was confused. He wasn’t real sure where he was or what was going on. He asked where I was; only he called me by my Mother’s name. He does this a lot, and has for all my life from time to time. I know he means me, and I just go with it. Unfortunately Hubbie was not so keen to this mis-calling of my name.
When Lewy asked Hubbie where Momma was, Hubbie said “She’s dead Lewy.” There was silence for 15 seconds or so, and then Lewy asked “When did this happen?” “Several years ago”. At this point, I knew I better get in there fast. I got up from my normal roosting spot at the computer and went in. When Lewy saw me, he burst into tears.
Daddy, I’m OK. I’m fine.
“When did you die?”
“I’m not dead Daddy; Hubbie thought you were asking about Momma. I’m fine”. By now Daddy was in full out loud crying with huge tears running down his face. He still seemed afraid of what was next.
“Well, when did I die?”
“You aren’t dead Daddy, you are fine, and I’m fine.”
“But where’s Momma?”
“She died almost eleven years ago, Daddy.” He started crying harder. He had apparently forgotten that Momma was gone. This was the first time I had ever seen him cry like this. In his old age he tears up occasionally when he thinks about WWII and friends he lost, but Lewy managed to hold it together when my brother died, when my niece, Lewy’s Grand Daughter died, and when Momma died. I know that he grieved, he just was raised to be a man and not to let it show.
I reached over to hug Daddy and tell him everything was OK. He put his arms around me and sobbed. For me, this is very difficult. As Lewy was reared to never show emotion, I’ve never been hugged (except for hellos and goodbyes when they lived in Florida) and I certainly have never heard “I love you” from my Dad. But at that moment, I felt loved. He was still so very upset that I was dead. At least I knew he cared about me. By now I was crying too.
Lewy then looked right at me and said “I didn’t know you were dead”.
We got him up to go sit at his spot at the kitchen counter to have his soup. He was OK for a few minutes, and then suddenly started crying again. “When did I die?”. Are we all dead?
No, Lewy not yet.
He cried the entire time he was having his soup and cornbread. Then, “What happened to Momma’s body?” “We cremated her and buried her ashes along side [my brother], and [his daughter.]”
“Good. That’s what Momma wanted.”
1 comment:
Hubbie said...
Wow. That was a tough one to read.
Thank You
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.
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As Hubbie was leaving for work this morning, he said Lewy was asleep but half out of the bed. So I got up out of bed, and went to check on him.
Lewy was in the bed from the waist up. He had his legs over the edge, feet crooked on the floor, and completely uncovered. I ask him what was going on.
UUUMMNUMMNUMMU.
Let’s put you back in bed.
“I been calling you all night. You never come. Why do you want me dead?.”
Daddy, I can’t hear you at night. And I’ve tried to explain to you, I cannot stay awake 24 hours a day. I have to sleep too.
“You don’t care about me, or you would come.”
I reached down to get his feet to lift his legs back up on the bed. Ever touched a dead person? His legs were that cold and stiff. I got him back in bed with Hubbie’s help, covered him up, and shortly there after was the wonderful sound of snoring.
When Lewy decided to go to bed last night, he went in and started pulling his sweat shirt up over his head, and got stuck. So I helped him take it off. And I asked what do you want to wear to sleep in? He picked up the shirt we had just taken off, and we put it right back on.
That should have been clue that it would be a bad night. When we put Lewy to bed last night, everything seemed normal. After he was down, the usual is to hear snoring within 3 minutes. Not this time.
After about 5 minutes, there came all this hollering from his room. We jumped up ran in to find Lewy sitting up on the side of his bed.
What’s the matter?
“I have to get outta here. I need to walk; I can’t get rid of this headache.”
Lately Lewy has had a lot of headaches. Something I’ve never known him to complain about. But they have been going on now for a few weeks.
I just gave you your pain pill.
It ain’t doing no good.”
After getting him back in bed, I thought things would settle down. Six or seven minutes later, he’s back up. Same thing, wanted another pain pill, and it repeated twice more. I finally just said I have to go to bed.
He is wearing me out. I stay up to midnight and later, with his getting up and carrying on, and am back up at 6 AM to deal with him. I’m at the point now where I need meds to get to sleep. The dentist gave me a thing to stick in my mouth at night to stop me from clinching my TMJ jaw. I think I’m going to start wearing it in the day time too. I find I’m stressed to the limit with trying to cope with the fussing and complaining, and then to be told that I don’t care about him.
Then after getting Lewy up, stripping the bed of pee sheets, getting him cleaned up and dressed, with him fighting me the whole time, when Lewy had worked my last nerve, he reached out and hugged me, and said “thank you.”
Something he’s never done before.
Two minutes later he was staring at the wall.
Pauline
.
.
As Hubbie was leaving for work this morning, he said Lewy was asleep but half out of the bed. So I got up out of bed, and went to check on him.
Lewy was in the bed from the waist up. He had his legs over the edge, feet crooked on the floor, and completely uncovered. I ask him what was going on.
UUUMMNUMMNUMMU.
Let’s put you back in bed.
“I been calling you all night. You never come. Why do you want me dead?.”
Daddy, I can’t hear you at night. And I’ve tried to explain to you, I cannot stay awake 24 hours a day. I have to sleep too.
“You don’t care about me, or you would come.”
I reached down to get his feet to lift his legs back up on the bed. Ever touched a dead person? His legs were that cold and stiff. I got him back in bed with Hubbie’s help, covered him up, and shortly there after was the wonderful sound of snoring.
When Lewy decided to go to bed last night, he went in and started pulling his sweat shirt up over his head, and got stuck. So I helped him take it off. And I asked what do you want to wear to sleep in? He picked up the shirt we had just taken off, and we put it right back on.
That should have been clue that it would be a bad night. When we put Lewy to bed last night, everything seemed normal. After he was down, the usual is to hear snoring within 3 minutes. Not this time.
After about 5 minutes, there came all this hollering from his room. We jumped up ran in to find Lewy sitting up on the side of his bed.
What’s the matter?
“I have to get outta here. I need to walk; I can’t get rid of this headache.”
Lately Lewy has had a lot of headaches. Something I’ve never known him to complain about. But they have been going on now for a few weeks.
I just gave you your pain pill.
It ain’t doing no good.”
After getting him back in bed, I thought things would settle down. Six or seven minutes later, he’s back up. Same thing, wanted another pain pill, and it repeated twice more. I finally just said I have to go to bed.
He is wearing me out. I stay up to midnight and later, with his getting up and carrying on, and am back up at 6 AM to deal with him. I’m at the point now where I need meds to get to sleep. The dentist gave me a thing to stick in my mouth at night to stop me from clinching my TMJ jaw. I think I’m going to start wearing it in the day time too. I find I’m stressed to the limit with trying to cope with the fussing and complaining, and then to be told that I don’t care about him.
Then after getting Lewy up, stripping the bed of pee sheets, getting him cleaned up and dressed, with him fighting me the whole time, when Lewy had worked my last nerve, he reached out and hugged me, and said “thank you.”
Something he’s never done before.
Two minutes later he was staring at the wall.
Pauline
Lunch With Lewy
Hi there. Pauline had to work today so, being the loyal husband that I am, I let the office know that I had Daddy Duty and stayed home with Lewy. It was pretty much an uneventful day until it came time for lunch. I’ve known the man for thirty years so I’ve come to terms with his tastes, or lack thereof. He has always liked hot sauce so as he gets older and his taste buds declined the hot sauce come out more and more. “Texas Pete for your vanilla ice cream?. No problem Here you go.”
For lunch today I prepared a lovely concoction of left over roast pork over fresh pasta with thyme and parsley. After a full morning of having to explain over and over that Lewy was not seeing people build a boat in the lake outside the window because A) the window blinds are closed and B) the window faces a large wooded hill, I washed mine down with a large gin and tonic.
INTERLUDE
That is one of the things Pauline may not have made clear to you as yet. Dealing with Lewy’s myriad of fellow travelers doesn’t sound like a big deal but it wears on you. He will tell you over and over again about what those people in the corner are building or plotting. Then when you explain that they are not real, that they are just part of his disease, that they are his pill people, he will respond “Yeah…………………………………… How much are they charging your for the work?”. If your wave your arms and spin about in the spot where the work is taking place, the pill people may go away for a minute. Sometimes they just duck. On really bad days he gets mad because you don’t believe him. It can be very hard to take and sometimes just snap. “There are no people building a boat out there Lewy. There’s no lake out there, just woods!!” Then you feel like pond scum, only lower.
I’ve been through both and physically ill is difficult but it is nothing compared to a mentally ill loved one. I doff my hat and deeply bow to Pauline and any of you who have to deal with it day after day.
MEANWHILE BACK AT LUNCH
I served the pork and pasta. Then I got out the peanut butter and crackers. I don’t believe it is disease related but for whatever reason peanut butter and crackers are required at lunchtime. He gets down the jar of creamy peanut butter and the saltine crackers which we keep in one of those square glass jars. The fun part is that Lewy puts the peanut butter on the knife and then sticks that in the jar of crackers which is lying on its side on the table. He snags a cracker with the peanut butter and brings it out. It’s an interesting little exercise. Pauline and I now keep a separate jar of crackers tucked away for our use. Ours is the jar that is not lined with peanut butter on the inside.
Lewy requested a glass of milk to drink. I served up the milk in a large, easily graspable glass and, of course, hot sauce for the pasta.
“Anything else?”
“Do we have any of that…………………………… dressing we had last night?”
“The raspberry vinaigrette?”
“The red stuff. Yeah”
“Sure. Here you go.”
Two big tablespoons right into the milk. It was low fat milk but still, to my amazement, it did not curdle.
“That got it?”
“Yeah…………………………………………………………Got any of that jelly?”
“Blackberry preserves coming right up. Anything else?”
“No, I’m good.”
Yeap. You guessed it.
Two tablespoons right into the milk/vinaigrette.
Stir well and drink. Finish it up with a spoon.
Reportedly it was quite satisfying.
4 Comments
Loving Daughter said...
You make me sick. How can you make fun of your Father this way? My mom has LBD and it is trajic, not funny.
Hubbie said...
Loving Daughter, I'm sorry you misunderstood and took offense at my post. I DO NOT make fun of my father in law. Humor is simply my way of dealing with a tragic situation. Without that it would just be crying all day. One of our friends assumes your mother is in a nursing home and that you are just taking your guilt out on my post. I hope that is not the case. Lewy had a stint in a rehab facilty and for Pauline that was worse than anything we have had to deal with at home. We wish the best for your mother and that you find a way to deal with what she is having to deal with.
raffcons said...
Thank you, thank you, for your amazing blog! It has had me laughing right out loud (not doing a hell of a lot of that lately as I am my husband's full-time caregiver). I certainly hear the love in all of it.
In our house, my husband and I view "Louie" as the third party that has moved in with us -- you never see him, he's just there -- like a Caspar the Demented Ghost.
God has a great sense of humor (just look at a giraffe or a hairless chihuahua if you don't believe me) -- and in our case, we feel he shared it with us as a gift and a tool for handling life with Louie. Man, if we couldn't laugh ...
pearose said...
People handle difficulties in their own way and Hubbie and Pauline are both gifted at writing and trying to see the humor in an event that has completely consumed their schedules and lives. I'm not a caregiver and don't know that I have it in me, but have not yet been challenged with that decision. It is the toughest job on earth and both Pauline and Hubby have my total respect and admiration for writing this blog. Aside from both of them being my boss at times in my life, I've also known Lewy for years.
Pauline and Hubbie - What you're doing helps you cope and others, as well. I agree with several others - you have a book to write and you add to it every day when you write out your blog. As the percentage of elderly rises with each passing day, the need for aging in place caregivers will be on the rise - let them know that they are not alone and share your humor with them. They'll need it. The stress is unrelentless, so bring on the humor!
What?
Lewy was very confused today.
He wandered about the house talking to the refrigerator and the TV. Some days are like this. He started out pretty well. Got out of the bed by himself and got a tee shirt on then he just forgot how to finish dressing.
I have had a lot of work to do lately which means I’m off in the back room sitting here at the computer for most of the day. Lewy will come in the room, stop, and stand still for 15-20 minutes.
He doesn't say much except “What?” when I had said nothing.
“What?”
What what?
“I don’t know………..you said something.”
No, no I didn’t. I’m just sitting here typing.
“Oh………………………….What?”
This goes on for the entire morning. Then he declares “I’m gonna go shit”. OK ? “I’m gonna go shit”
Yes, I heard you the first time.
“What?”
After standing there another 10 minutes he goes into the bathroom.
“Polly, I can’t get the commode to move”.
"Good."
I continue my working at the computer and I realize about 15 minutes have passed. Better check in on Lewy. I got up a go to the bathroom and he’s holding onto the grab bar on the far wall, hovering over the commode. He’s stuck – frozen in that strained position oozing out a high pitched grunt that you expect to hear from a weight lifter.
Lewy can’t recall if he did his job or was just getting ready to.
This frozen straining goes on a lot. He does it lying in the bed. You can see that his abdomen muscles are so tight they poke out. It’s the Parkinson’s part. He freezes and strains to move or stay still, I’m never sure what he’s doing, other than fighting with himself.
I gasp a large breath of air and go into the bathroom to see what’s going on.
And there it is.
The biggest turd I’ve ever seen in my life.
As big around as my arm just below my elbow, and I’m not a thin person.How on earth does one exude such a monster? I got him cleaned up and got his paper diapers back on him. After such an ordeal, its nap time.
The best time of the day.
Now what to do with the turd?
I decide to let it soak a while.
Something's Different
How is it that Lewy can remember his pills, but he can’t remember where the bathroom is?
Actually, he is stuck on the pills. Every 30 minutes or so…Ain’t it time for some pills?
In 1996 a year before my mother died she told me that Daddy was “different”. She said she really could not put her finger on it exactly, but something wasn’t right.In my Dad’s family, old age dementia was batting 1.000. Not one of them that I ever knew was close to sane. The younger members of the family, including myself in my 20’s, have battled schizophrenia. Hell, several of us have papers to prove it.
When your parent gets diagnosed with dementia, you start looking for past clues. You Google for Lewy Body and you hope to find a friendly voice out there that knows where you are. I can’t say that insanity begets dementia, but apparently one of the very early signals is acting out in your dream state.
When I was a kid, Daddy used to get in fights in his dreams and would punch holes in the walls. It got so bad Momma was afraid to sleep in the bed with him. He continued to do this off and on, sometimes with years in between. Then Lewy would smash the wall again.
When Momma died, I insisted That Daddy move in with us. He was perfectly self sufficient and resisted, but I refused to accept no for an answer. I knew that he was having issues, (although I had never seen it) from that 30 second talk with my mother the summer before.
That was late Spring in 1997.
Get the Gun
This morning started out being a good day, at least for me. I had time to walk the dogs and check my email before Lewy woke up. Then it took a turn for the worse.
“Ummmuumumunumunumm!” Ten second pause.
“UMMUNUMUNMUNUMNUM!!!”Guess I better go see what’s up.
“Morning Dad. Do you want to get up?”
“UNUMUNUMNUNMMNMNUMNUM!”
“Do you want to stay in bed?”
“Unmnum I unm get up.”
“OK. Lets get you up.”
A typical start to the day. His bed is wet, soaked through the top pee pad down to the second pee pad under the fitted sheet. I’ve learned that you need a minimum of three pee pads or the floor is likely to be wet in the morning. You can see where the hardwood under his bed buckled slightly from the time he peed so much it spilled over to the floor.
It only took once to get those extra pads.
I pulled the covers off of him, and reached for his feet to help him swing them out of the bed and saw that during the night he had ripped his pajama bottoms to shreds. Before I thought not to ask I blurted out “What on earth happened to your jammies?”
“She came in here and tore ‘em up. I told her not to.”
It was his regular night visitor. When she first showed up she would sit in his chair and watch him all night. She doesn’t have any legs, but she has dozens of children. She used to scare Lewy, but now that he has gotten to know her name and her husband, and their entire family history, he just wishes she would stay out of his bed.
After I got Lewy cleaned up and dressed, I made him breakfast and set out his pills. I went into the spare bedroom/office to start my daily telecommute.
“YOU BETTER GET OUTTA HERE! I KNOW WHO YOU ARE. YOU BETTER LEAVE!!”
This was new.
Normally he talks so low that I can barely hear him. Now he is screaming.“Dad, what’s going on?”
“Don’t you see him!? He’s standing there with a shotgun!”
“No, Dad, I don’t see him. He’s one of your people.”
I went back to my work.
More screaming.
I did not interfere.
Lewy started mumbling out loud to his people about a month ago, but now he is clear and direct and loud. He kept yelling at them off and on for a couple of hours. Then,“PAULINE! PAULINE! GET THE GUN!
This was getting a bit out of hand. I went in and swung my arms through the guy with the gun, and took Lewy’s hand and walked him over to his Lazy Boy. From the kitchen to the chair is maybe 12 feet, but It’s a good ten minute walk.
Finally he sits, reclines, and sleeps.
Lewy's Life Before he Became Lewy
Lewy was born Douglas W. Cotton to a dirt poor set of uneducated back woods dirt farmers. They had 3 children that survived past 6 months of age and two that did not make it that long.
They were hard working people whose livelihood depended on scraping together anything they could. Food had to be grown and preserved, meat had to be hunted or raised and slaughtered. Mostly meat came from hunting. You couldn’t afford to kill your layin’ hens. Eggs and milk were the only two things they had to barter with when the local trader came around to their house.
Daddy went to school until the 8th grade. That was as far as he could afford to go. Being born in 1924, he saw the Great Depression full force during his youth. As so many did during the Great Depression, Daddy, rather than go to school, and his father went North to look for work.
Fortunately they found work at the naval ship yards near Baltimore. There Daddy learned to be a 1st Class welder. (He told me the position title, but I never paid much attention. Yeah, yeah, heard it all before.) He worked in the ship yards until Japan bombed Pearl Harbor.
Then he joined the Navy.
In 1943, while on leave in Washington D.C. he walked up to a total stranger, a pretty young lady sitting on a park bench, and kissed her right on the mouth….and yes, 11 months later on June 10th, 1944 she became his wife.
On June 26th Daddy was shipped out with the 7th Fleet on the
USS Currituck (AV-7).
The Currituck saw combat action, as the Japanese were fighting to the very end. Daddy has told me many times of attacks from kamikazes. He personally saw ships sunk and airplanes blown out of the sky. His WWII stories are of having a bullet fly around his head in his gun turret, and seeing a buddy next to him get his head blown apart. Daddy sailed through the Panama Canal on to the Pacific Ocean and onward to the Philippines, China, Korea, Guam, Guadalcanal, and most parts of Indonesia. Not bad for a dirt poor hillbilly.
While not at battle station, he was the ship’s barber, and worked in the laundry. To this day he still gets out his barber shears to trim his beard. Not that he manages, but he tries.
Douglas in middle in ship's laundry
After the War, Douglas and his bride, Pauline left Washington D.C. to get their lives started. By 1951 they had their first child.
He worked as a real estate agent, then owned his own construction business, sold Ramblers, (the old American Motors product), switched to selling Fords, then decided to go back into business for himself selling mobile homes and Holiday Ramblers.
During the early 60’s Daddy raced speed boats, and ran a go cart track one night a week for the Rotary Club. As a kid, I thought that was pretty cool.
For not having much of a formal education, Daddy did pretty well. He didn’t get rich, but with Momma’s Government disability money and medical insurance they were able to retire in their mid 50’s. They packed up their toys and moved to Sunny Florida…where else?
While in Florida Daddy and Momma became regional shuffleboard champions. Daddy learned ballroom dancing and tried his hand at painting. They lived there until Momma died in 1997.
Daddy came to live with us that summer at my insistance, because Momma had told me the summer before that "something was not right with your Daddy". At first he would go back to Florida during the winters, but quit going by 2001. He met friends here, where he would go to dances once or twice a week, but that too stopped. He hasn’t gone dancing since late 2006.
2007 was been a steady decline. His walking, talking, eating, thinking abilities are almost gone.
Now, Daddy is mostly gone and Lewy is afraid of dying. He wants to get better, and believes that he will. On great days, Lewy says he wants to go dancing again.
They were hard working people whose livelihood depended on scraping together anything they could. Food had to be grown and preserved, meat had to be hunted or raised and slaughtered. Mostly meat came from hunting. You couldn’t afford to kill your layin’ hens. Eggs and milk were the only two things they had to barter with when the local trader came around to their house.
Daddy went to school until the 8th grade. That was as far as he could afford to go. Being born in 1924, he saw the Great Depression full force during his youth. As so many did during the Great Depression, Daddy, rather than go to school, and his father went North to look for work.
Fortunately they found work at the naval ship yards near Baltimore. There Daddy learned to be a 1st Class welder. (He told me the position title, but I never paid much attention. Yeah, yeah, heard it all before.) He worked in the ship yards until Japan bombed Pearl Harbor.
Then he joined the Navy.
In 1943, while on leave in Washington D.C. he walked up to a total stranger, a pretty young lady sitting on a park bench, and kissed her right on the mouth….and yes, 11 months later on June 10th, 1944 she became his wife.
On June 26th Daddy was shipped out with the 7th Fleet on the
USS Currituck (AV-7).
The Currituck saw combat action, as the Japanese were fighting to the very end. Daddy has told me many times of attacks from kamikazes. He personally saw ships sunk and airplanes blown out of the sky. His WWII stories are of having a bullet fly around his head in his gun turret, and seeing a buddy next to him get his head blown apart. Daddy sailed through the Panama Canal on to the Pacific Ocean and onward to the Philippines, China, Korea, Guam, Guadalcanal, and most parts of Indonesia. Not bad for a dirt poor hillbilly.
While not at battle station, he was the ship’s barber, and worked in the laundry. To this day he still gets out his barber shears to trim his beard. Not that he manages, but he tries.
Douglas in middle in ship's laundry
After the War, Douglas and his bride, Pauline left Washington D.C. to get their lives started. By 1951 they had their first child.
He worked as a real estate agent, then owned his own construction business, sold Ramblers, (the old American Motors product), switched to selling Fords, then decided to go back into business for himself selling mobile homes and Holiday Ramblers.
During the early 60’s Daddy raced speed boats, and ran a go cart track one night a week for the Rotary Club. As a kid, I thought that was pretty cool.
For not having much of a formal education, Daddy did pretty well. He didn’t get rich, but with Momma’s Government disability money and medical insurance they were able to retire in their mid 50’s. They packed up their toys and moved to Sunny Florida…where else?
While in Florida Daddy and Momma became regional shuffleboard champions. Daddy learned ballroom dancing and tried his hand at painting. They lived there until Momma died in 1997.
Daddy came to live with us that summer at my insistance, because Momma had told me the summer before that "something was not right with your Daddy". At first he would go back to Florida during the winters, but quit going by 2001. He met friends here, where he would go to dances once or twice a week, but that too stopped. He hasn’t gone dancing since late 2006.
2007 was been a steady decline. His walking, talking, eating, thinking abilities are almost gone.
Now, Daddy is mostly gone and Lewy is afraid of dying. He wants to get better, and believes that he will. On great days, Lewy says he wants to go dancing again.
Forward
.
.
.
Background: My Dad has Lewy Body Dementia. Its been almost six years since I quit going into work because my husband and I decided that we did not want to come home from work one day to a pile of ashes. Fortunately for me my employer allows me to telecommute.
I’m not a parent, so judging “Lewy’s” relative age is a bit tough. He forgets where the bath room is, and has completely forgotten how to use the commode. I have to dress him. He attempts to help but generally it makes it harder because he’s trying to take things off that I’m trying to put on him and vice versa.He feeds himself with some effort. Both our dogs love to sit under him when he eats. I hate the jelly in the long haired pooch’s mane that inevitably appears the day after her bath.Lewy sees people. Lots of people. They walk through walls and hide under the bed and in the closets. The FBI has our house wired for sound, and cameras are in every room. The TV talks directly to him. He won $200,000 three weeks ago on a game show. He still thinks Alton Brown is trying to tell him where to collect the loot.
No Dad, he’s just baking bread.
This diary begins in January of 2008.
.
.
Background: My Dad has Lewy Body Dementia. Its been almost six years since I quit going into work because my husband and I decided that we did not want to come home from work one day to a pile of ashes. Fortunately for me my employer allows me to telecommute.
I’m not a parent, so judging “Lewy’s” relative age is a bit tough. He forgets where the bath room is, and has completely forgotten how to use the commode. I have to dress him. He attempts to help but generally it makes it harder because he’s trying to take things off that I’m trying to put on him and vice versa.He feeds himself with some effort. Both our dogs love to sit under him when he eats. I hate the jelly in the long haired pooch’s mane that inevitably appears the day after her bath.Lewy sees people. Lots of people. They walk through walls and hide under the bed and in the closets. The FBI has our house wired for sound, and cameras are in every room. The TV talks directly to him. He won $200,000 three weeks ago on a game show. He still thinks Alton Brown is trying to tell him where to collect the loot.
No Dad, he’s just baking bread.
This diary begins in January of 2008.
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