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A journey through caring for a loved one with Dementia
In Memory of Douglas Wilford Cotton
January 13, 1924 - May 9, 2008
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Letters
I recently came across your blog during one of my many desperate searches for information about Lewy, our best friend and enemy.
While I haven't read every entry yet, what I have sifted through has made me sigh out loud in complete relief. Though logic (and all the people at the Alzheimer's support group) tell me I am not alone, it sure feels like it sometimes. Reading experiences that could be my own from someone whose loved one actually has Lewy Body and not some offshoot of another form of dementia is invaluable, and I wanted to say THANK YOU so much for taking the time to put your daily trials where I could find them.
If I can possibly make a long story short, my Dad has Lewy. For as long as I can remember, he had those vivid dreams/night terrors and punched holes in walls. But after it was just him and my Mom at home, she'd tell me about his strange behavior and "visitors" at night...he'd chase kids, animals, men with weapons, and use the clothes dryer as a toilet. When she passed away, I brought him into my home, but because I was fresh out of cancer surgery/radiation myself and had two small children to boot (and life in general), we eventually found him a place of his own, which proved disastrous. We brought him back into our home. But after weeks of chasing "Lewy" around at all hours, re-arranging furniture and chasing naked, peeing Lewy, and naked exercising Lewy around the house, we realized he needed round the clock care that I definitely could not provide for him. 3 facilities later (had to move him after finding evidence of neglect and abuse), I am confident he is finally being well cared for. Deep breath!
Of course there are a million other things in between as you clearly well know.
But again, thank you thank you thank you...I will be faithfully reading whenever I can.
All my best to you and your family,
Laine
1 comments:
Stella said...
Oh laine, bless you. Yes, you know LBD. You describe what my life would have been like if it were not for the blindness. I feel awful for being thankful for the blindness which kept Freddie confined to close quarters instead of blasting all through the house and yard. I'm glad you have found a safe place and good people to care for your dad. It takes special inner strength to look after a Lewy. If you have found folks like that, it is a wonderful miracle.
While I haven't read every entry yet, what I have sifted through has made me sigh out loud in complete relief. Though logic (and all the people at the Alzheimer's support group) tell me I am not alone, it sure feels like it sometimes. Reading experiences that could be my own from someone whose loved one actually has Lewy Body and not some offshoot of another form of dementia is invaluable, and I wanted to say THANK YOU so much for taking the time to put your daily trials where I could find them.
If I can possibly make a long story short, my Dad has Lewy. For as long as I can remember, he had those vivid dreams/night terrors and punched holes in walls. But after it was just him and my Mom at home, she'd tell me about his strange behavior and "visitors" at night...he'd chase kids, animals, men with weapons, and use the clothes dryer as a toilet. When she passed away, I brought him into my home, but because I was fresh out of cancer surgery/radiation myself and had two small children to boot (and life in general), we eventually found him a place of his own, which proved disastrous. We brought him back into our home. But after weeks of chasing "Lewy" around at all hours, re-arranging furniture and chasing naked, peeing Lewy, and naked exercising Lewy around the house, we realized he needed round the clock care that I definitely could not provide for him. 3 facilities later (had to move him after finding evidence of neglect and abuse), I am confident he is finally being well cared for. Deep breath!
Of course there are a million other things in between as you clearly well know.
But again, thank you thank you thank you...I will be faithfully reading whenever I can.
All my best to you and your family,
Laine
1 comments:
Stella said...
Oh laine, bless you. Yes, you know LBD. You describe what my life would have been like if it were not for the blindness. I feel awful for being thankful for the blindness which kept Freddie confined to close quarters instead of blasting all through the house and yard. I'm glad you have found a safe place and good people to care for your dad. It takes special inner strength to look after a Lewy. If you have found folks like that, it is a wonderful miracle.
Letters
Hey Pauline,
Sounds like you have your own brand of "air pollution" going on with Lewy!
I know how bad it can get. During my mom's last couple of weeks all her waste of all kinds were rank beyond description. Sometimes I thought we would have to evacuate the building, or call a haz mat team! It's not everybody that can clean up this kind of "pollution!"
I took it to mean that nothing in her body was functioning properly anymore, and that organs were out of balance and were slowly shutting down. Lewy's kidneys might well be failing, one day at a time.
Thank goodness it is spring and you can throw all the windows open and run the fans! Those odors are extremely persistent, but at least all this helps!
Get out of the house at every opportunity and breath some fresh clean air and smell every nice spring flower you can find! These situations do give us an entirely new appreciation for breathable air! (You might consider going to an army surplus store and buying a gas mask! Who would Lewy think you were if he saw you in one of those???)
Love you,
Patty :)
Sounds like you have your own brand of "air pollution" going on with Lewy!
I know how bad it can get. During my mom's last couple of weeks all her waste of all kinds were rank beyond description. Sometimes I thought we would have to evacuate the building, or call a haz mat team! It's not everybody that can clean up this kind of "pollution!"
I took it to mean that nothing in her body was functioning properly anymore, and that organs were out of balance and were slowly shutting down. Lewy's kidneys might well be failing, one day at a time.
Thank goodness it is spring and you can throw all the windows open and run the fans! Those odors are extremely persistent, but at least all this helps!
Get out of the house at every opportunity and breath some fresh clean air and smell every nice spring flower you can find! These situations do give us an entirely new appreciation for breathable air! (You might consider going to an army surplus store and buying a gas mask! Who would Lewy think you were if he saw you in one of those???)
Love you,
Patty :)
Letters
Hi Pauline,
It's Monday again, another new week. I'm sure Lewy doesn't know the difference, but every day is a long one for you, even if you're not sure what day it is! I'm certain I would lose track in your place.
What you are doing is about the hardest job there is. Harder, I think, than going to Iraq, to risk dying or horrible injury. And that is pretty hard for very young fine men who haven't had a chance to live out a life yet, or those leaving small kids behind who might never have a father.
Nobody ever promised us a rose garden, as the song says. You are deep into the thorn patch right now, but the roses will bloom again, and you should have a whole garden full! No more thorns.
We love you and think of you every day!
Patty :)
p.s. You might tell Lewy that heaven is made of chocolate, kind of like a gigantic gingerbread house made all of chocolate! He can eat all he wants to when he gets there!
It's Monday again, another new week. I'm sure Lewy doesn't know the difference, but every day is a long one for you, even if you're not sure what day it is! I'm certain I would lose track in your place.
What you are doing is about the hardest job there is. Harder, I think, than going to Iraq, to risk dying or horrible injury. And that is pretty hard for very young fine men who haven't had a chance to live out a life yet, or those leaving small kids behind who might never have a father.
Nobody ever promised us a rose garden, as the song says. You are deep into the thorn patch right now, but the roses will bloom again, and you should have a whole garden full! No more thorns.
We love you and think of you every day!
Patty :)
p.s. You might tell Lewy that heaven is made of chocolate, kind of like a gigantic gingerbread house made all of chocolate! He can eat all he wants to when he gets there!
Letters
Hi Pauline,
Karen here.
You have a right to be depressed. But it is situational depression - and when this very difficult but loving journey (I can't think of a better word, but "journey" does seem trite) you have undertaken is over, you will feel better. I'm so glad you had time with your friends. They must feel good, too, that they could be there for you. I bet they'll come whenever you ask.
And I totally understand about your gag reflex. My mom wanted me to floss her teeth - and I just couldn't do it. And that is so minor. You are a very visual writer - my stomach started churning while I read your descriptions. Is it possible for you to hire a caretaker from an agency to come each morning to clean up the phlegm and aspirate what's in his throat? Would that be too self-indulgent? Like treating yourself to a caretaker's shopping spree? I think you deserve it.
I wonder if the reason Daddy doesn't look out the window is because he is "blind" on that side. I understand that LBD can cause some not to register anything out of one eye. I can hold something right in front of Mom and sometimes she won't "see" it. She carries a handkerchief with her and when it's on her lap and she's holding it, she can't find it. But, I suppose Daddy doesn't see anything because of the stage he's at. Mom doesn't know where to put the toilet paper after she's wiped herself. She tries to hand it to me or put it down in her Depends. I'll repeat and repeat for her to toss it into the toilet and it takes so long for it to register and for her to understand what to do. She was always so supportive through my life, maybe I should just take the toilet paper from her and not keep trying to slow down her slide into oblivion.
Could you write sometime about some of the earlier stages in Daddy's disease. It all must seem like one big jumbled memory. I know you wrote about some aspects. How did he come to be diagnosed with LBD? If you did write about it, never mind. I probably read it and have just forgotten. I'm sorry that there is no longer any humor to recount. The earlier blogs did make me smile, even though my mom's LBD leaves me horrified that this has happened to her. I ask myself again and again, how do I feel . . . and I always come up with the word "horrified," as though I'm witnessing an unexpected and very serious accident. One incident last fall does seem humorous now and that was while I was staying with her, but had slipped away to visit my husband in our apartment. I received a call from a neighbor. Mom had telephoned her very distressed because I was trapped behind the glass on the face of the wall clock. She could see me. In fact, when the neighbor arrived, Mom was still seeing me and the neighbor had to unplug the clock and remove it from the wall. Then the neighbor called me. When I arrived, they were sitting at the kitchen table chatting. Mom seemed to realize that it had been an hallucination. Logic seemed to be one of the first things to leave as Mom became ill, but she had always been rather emotional and anxious by nature.
Keep writing. No one else is out there being so forthright about the witnessing of dying and the dealing with it. The Victorians wrote about the "Good Death" and the "Beautiful Death," making it look rather attractive. Thank you for not sanitizing it.
My thoughts are with you. And with Hubbie, too. It must grieve him to watch you go through this. Of course, he may also be thinking, thank goodness I married a woman who's going to take care of me in my time of need. Of course, you might just say, Sorry, done that. I'm kidding . . . I'm kidding.Karen
1 comments:
Spouse said...
Yes, it is uncanny how our Lewys do the exact same actions. Where to place the paper is always a big problem. My Lewy always asks where to put the used paper. I am trying out a new system to make it all seem the same. I'm tying a plastic bag on the leg of his bathroom commode, so he can always put his paper there.
I am also tying a plastic bag to the leg of his dining chair, so he can place his nose napkins in it. (He goes through 6 at each meal) To us there is a distinct difference, but to a Lewy, they are the same. To all of us it is all groooosssss !!!
Karen here.
You have a right to be depressed. But it is situational depression - and when this very difficult but loving journey (I can't think of a better word, but "journey" does seem trite) you have undertaken is over, you will feel better. I'm so glad you had time with your friends. They must feel good, too, that they could be there for you. I bet they'll come whenever you ask.
And I totally understand about your gag reflex. My mom wanted me to floss her teeth - and I just couldn't do it. And that is so minor. You are a very visual writer - my stomach started churning while I read your descriptions. Is it possible for you to hire a caretaker from an agency to come each morning to clean up the phlegm and aspirate what's in his throat? Would that be too self-indulgent? Like treating yourself to a caretaker's shopping spree? I think you deserve it.
I wonder if the reason Daddy doesn't look out the window is because he is "blind" on that side. I understand that LBD can cause some not to register anything out of one eye. I can hold something right in front of Mom and sometimes she won't "see" it. She carries a handkerchief with her and when it's on her lap and she's holding it, she can't find it. But, I suppose Daddy doesn't see anything because of the stage he's at. Mom doesn't know where to put the toilet paper after she's wiped herself. She tries to hand it to me or put it down in her Depends. I'll repeat and repeat for her to toss it into the toilet and it takes so long for it to register and for her to understand what to do. She was always so supportive through my life, maybe I should just take the toilet paper from her and not keep trying to slow down her slide into oblivion.
Could you write sometime about some of the earlier stages in Daddy's disease. It all must seem like one big jumbled memory. I know you wrote about some aspects. How did he come to be diagnosed with LBD? If you did write about it, never mind. I probably read it and have just forgotten. I'm sorry that there is no longer any humor to recount. The earlier blogs did make me smile, even though my mom's LBD leaves me horrified that this has happened to her. I ask myself again and again, how do I feel . . . and I always come up with the word "horrified," as though I'm witnessing an unexpected and very serious accident. One incident last fall does seem humorous now and that was while I was staying with her, but had slipped away to visit my husband in our apartment. I received a call from a neighbor. Mom had telephoned her very distressed because I was trapped behind the glass on the face of the wall clock. She could see me. In fact, when the neighbor arrived, Mom was still seeing me and the neighbor had to unplug the clock and remove it from the wall. Then the neighbor called me. When I arrived, they were sitting at the kitchen table chatting. Mom seemed to realize that it had been an hallucination. Logic seemed to be one of the first things to leave as Mom became ill, but she had always been rather emotional and anxious by nature.
Keep writing. No one else is out there being so forthright about the witnessing of dying and the dealing with it. The Victorians wrote about the "Good Death" and the "Beautiful Death," making it look rather attractive. Thank you for not sanitizing it.
My thoughts are with you. And with Hubbie, too. It must grieve him to watch you go through this. Of course, he may also be thinking, thank goodness I married a woman who's going to take care of me in my time of need. Of course, you might just say, Sorry, done that. I'm kidding . . . I'm kidding.Karen
1 comments:
Spouse said...
Yes, it is uncanny how our Lewys do the exact same actions. Where to place the paper is always a big problem. My Lewy always asks where to put the used paper. I am trying out a new system to make it all seem the same. I'm tying a plastic bag on the leg of his bathroom commode, so he can always put his paper there.
I am also tying a plastic bag to the leg of his dining chair, so he can place his nose napkins in it. (He goes through 6 at each meal) To us there is a distinct difference, but to a Lewy, they are the same. To all of us it is all groooosssss !!!
Letters
Hi Pauline, Karen here.
I think I understand what you're feeling. You had primed yourself for Daddy's death, believing that it was coming sooner than later. You were already grieving and probably telling yourself, "I can do this. . . . It won't be much longer."
And now, who knows when the good angel will swoop down for him? Maybe you've "hit the wall."
I don't have any advice, other than to suggest that you have another evening out with your girlfriends. I think it's so nice that you have friends. Use them.
I've decided to eliminate Risperidone, the potent anti-psychotic that reduced (though didn't quite eliminate) Mom's hallucinations and maybe her paranoia for the past 6 months. Whether it is contributing to her increased difficulty in getting her feet to move for a second or two, or to her lack of interest in TV or in the musical entertainments that troop through the cottage a couple of times a week , or to her off-and-on-again aphasia, I don't know.
She's been living at an assisted living cottage for 15 dementia residents for 5 months. I had started her on Risperidone while I was taking care of her in her home, perhaps for my own benefit (I had such a limited understanding of LBD at the time and just wanted her be normal again). When I told Peggy the Nurse at her facility that I wanted to wean Mom off of it, she surprised me with her enthusiasm. Turns out she is a great believer in giving as few mood-altering medications as possible.
Who knew?
I expressed my concern that Mom may give the attendants some trouble (she was never violent), but she said that Mom will probably just be more vocal and they can deal with it. It was your advocating for fewer medications, Pauline, that caused me to do more research on the Internet about the drug and how it interacts with LBD. So, we shall see.
Today, Mom was pretty adamant about my taking her home, but I think she meant her childhood home because she wanted to see her mother (dead now for 30 years). I finally put her into her coat and had her push her walker outside. She soon tired and grew cold and wanted to go back in.
A warm and cheerful fire and smiling attendants welcomed her back.
Best regards,
Karen
2 comments:
Stella said...
Karen, your post is so much what I need to read right now. Having brought my husband home from the hospital one week ago and he was on the whole variety of those meds and he went into such a stupor, I did not give him any more but it is the week-end and I am sitting here wondering just what in the world I am doing. I don't dare pick and choose what to give him because they are so powerful but the thought of him becoming like he was before the hospital scares the daylights out of me. I'm trying to be patient until the next office hours on Monday and I can talk to the doctor. Your post makes me feel like I can back off some of the drugs and he can go back to entertaining the pretty little girls and the home builders. Pauline remarked one time about the strange band of sisters we are. I watch for her reports of Lewy and pray for the angels to watch over her.
old friend said...
Thanks to you, Karen for your words of wisdom for they speak volumes to others that need a word of encouragement!
I think I understand what you're feeling. You had primed yourself for Daddy's death, believing that it was coming sooner than later. You were already grieving and probably telling yourself, "I can do this. . . . It won't be much longer."
And now, who knows when the good angel will swoop down for him? Maybe you've "hit the wall."
I don't have any advice, other than to suggest that you have another evening out with your girlfriends. I think it's so nice that you have friends. Use them.
I've decided to eliminate Risperidone, the potent anti-psychotic that reduced (though didn't quite eliminate) Mom's hallucinations and maybe her paranoia for the past 6 months. Whether it is contributing to her increased difficulty in getting her feet to move for a second or two, or to her lack of interest in TV or in the musical entertainments that troop through the cottage a couple of times a week , or to her off-and-on-again aphasia, I don't know.
She's been living at an assisted living cottage for 15 dementia residents for 5 months. I had started her on Risperidone while I was taking care of her in her home, perhaps for my own benefit (I had such a limited understanding of LBD at the time and just wanted her be normal again). When I told Peggy the Nurse at her facility that I wanted to wean Mom off of it, she surprised me with her enthusiasm. Turns out she is a great believer in giving as few mood-altering medications as possible.
Who knew?
I expressed my concern that Mom may give the attendants some trouble (she was never violent), but she said that Mom will probably just be more vocal and they can deal with it. It was your advocating for fewer medications, Pauline, that caused me to do more research on the Internet about the drug and how it interacts with LBD. So, we shall see.
Today, Mom was pretty adamant about my taking her home, but I think she meant her childhood home because she wanted to see her mother (dead now for 30 years). I finally put her into her coat and had her push her walker outside. She soon tired and grew cold and wanted to go back in.
A warm and cheerful fire and smiling attendants welcomed her back.
Best regards,
Karen
2 comments:
Stella said...
Karen, your post is so much what I need to read right now. Having brought my husband home from the hospital one week ago and he was on the whole variety of those meds and he went into such a stupor, I did not give him any more but it is the week-end and I am sitting here wondering just what in the world I am doing. I don't dare pick and choose what to give him because they are so powerful but the thought of him becoming like he was before the hospital scares the daylights out of me. I'm trying to be patient until the next office hours on Monday and I can talk to the doctor. Your post makes me feel like I can back off some of the drugs and he can go back to entertaining the pretty little girls and the home builders. Pauline remarked one time about the strange band of sisters we are. I watch for her reports of Lewy and pray for the angels to watch over her.
old friend said...
Thanks to you, Karen for your words of wisdom for they speak volumes to others that need a word of encouragement!
Letters
Hi Pauline, Karen here.
I think I understand what you're feeling. You had primed yourself for Daddy's death, believing that it was coming sooner than later. You were already grieving and probably telling yourself, "I can do this. . . . It won't be much longer."
And now, who knows when the good angel will swoop down for him? Maybe you've "hit the wall."
I don't have any advice, other than to suggest that you have another evening out with your girlfriends. I think it's so nice that you have friends. Use them.
I've decided to eliminate Risperidone, the potent anti-psychotic that reduced (though didn't quite eliminate) Mom's hallucinations and maybe her paranoia for the past 6 months. Whether it is contributing to her increased difficulty in getting her feet to move for a second or two, or to her lack of interest in TV or in the musical entertainments that troop through the cottage a couple of times a week , or to her off-and-on-again aphasia, I don't know.
She's been living at an assisted living cottage for 15 dementia residents for 5 months. I had started her on Risperidone while I was taking care of her in her home, perhaps for my own benefit (I had such a limited understanding of LBD at the time and just wanted her be normal again). When I told Peggy the Nurse at her facility that I wanted to wean Mom off of it, she surprised me with her enthusiasm. Turns out she is a great believer in giving as few mood-altering medications as possible.
Who knew?
I expressed my concern that Mom may give the attendants some trouble (she was never violent), but she said that Mom will probably just be more vocal and they can deal with it. It was your advocating for fewer medications, Pauline, that caused me to do more research on the Internet about the drug and how it interacts with LBD. So, we shall see.
Today, Mom was pretty adamant about my taking her home, but I think she meant her childhood home because she wanted to see her mother (dead now for 30 years). I finally put her into her coat and had her push her walker outside. She soon tired and grew cold and wanted to go back in.
A warm and cheerful fire and smiling attendants welcomed her back.
Best regards,
Karen
2 comments:
Stella said...
Karen, your post is so much what I need to read right now. Having brought my husband home from the hospital one week ago and he was on the whole variety of those meds and he went into such a stupor, I did not give him any more but it is the week-end and I am sitting here wondering just what in the world I am doing. I don't dare pick and choose what to give him because they are so powerful but the thought of him becoming like he was before the hospital scares the daylights out of me. I'm trying to be patient until the next office hours on Monday and I can talk to the doctor. Your post makes me feel like I can back off some of the drugs and he can go back to entertaining the pretty little girls and the home builders. Pauline remarked one time about the strange band of sisters we are. I watch for her reports of Lewy and pray for the angels to watch over her.
old friend said...
Thanks to you, Karen for your words of wisdom for they speak volumes to others that need a word of encouragement!
I think I understand what you're feeling. You had primed yourself for Daddy's death, believing that it was coming sooner than later. You were already grieving and probably telling yourself, "I can do this. . . . It won't be much longer."
And now, who knows when the good angel will swoop down for him? Maybe you've "hit the wall."
I don't have any advice, other than to suggest that you have another evening out with your girlfriends. I think it's so nice that you have friends. Use them.
I've decided to eliminate Risperidone, the potent anti-psychotic that reduced (though didn't quite eliminate) Mom's hallucinations and maybe her paranoia for the past 6 months. Whether it is contributing to her increased difficulty in getting her feet to move for a second or two, or to her lack of interest in TV or in the musical entertainments that troop through the cottage a couple of times a week , or to her off-and-on-again aphasia, I don't know.
She's been living at an assisted living cottage for 15 dementia residents for 5 months. I had started her on Risperidone while I was taking care of her in her home, perhaps for my own benefit (I had such a limited understanding of LBD at the time and just wanted her be normal again). When I told Peggy the Nurse at her facility that I wanted to wean Mom off of it, she surprised me with her enthusiasm. Turns out she is a great believer in giving as few mood-altering medications as possible.
Who knew?
I expressed my concern that Mom may give the attendants some trouble (she was never violent), but she said that Mom will probably just be more vocal and they can deal with it. It was your advocating for fewer medications, Pauline, that caused me to do more research on the Internet about the drug and how it interacts with LBD. So, we shall see.
Today, Mom was pretty adamant about my taking her home, but I think she meant her childhood home because she wanted to see her mother (dead now for 30 years). I finally put her into her coat and had her push her walker outside. She soon tired and grew cold and wanted to go back in.
A warm and cheerful fire and smiling attendants welcomed her back.
Best regards,
Karen
2 comments:
Stella said...
Karen, your post is so much what I need to read right now. Having brought my husband home from the hospital one week ago and he was on the whole variety of those meds and he went into such a stupor, I did not give him any more but it is the week-end and I am sitting here wondering just what in the world I am doing. I don't dare pick and choose what to give him because they are so powerful but the thought of him becoming like he was before the hospital scares the daylights out of me. I'm trying to be patient until the next office hours on Monday and I can talk to the doctor. Your post makes me feel like I can back off some of the drugs and he can go back to entertaining the pretty little girls and the home builders. Pauline remarked one time about the strange band of sisters we are. I watch for her reports of Lewy and pray for the angels to watch over her.
old friend said...
Thanks to you, Karen for your words of wisdom for they speak volumes to others that need a word of encouragement!
Letters
Hi Pauline, It’s Patty here.
Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.
All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.
First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.
She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.
After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.
She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.
She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.
All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.
My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.
And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."
She had lived a long good 95 years, and she thought that was enough.
Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think Your Mom would like for him to be there too.
You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.
Warmest hugs,
Patty
2 comments:
old friend said...
What wise words Patty wrote, truly from someone who has walked ahead of you. In remembering my FIL's journey toward death, what vividly stays with me is in the last few moments, my DMIL kneeling beside the hospital bed (which was in the living room also), and saying "I love you Harry" and in a moment of clarity, he opened his eyes and looked at her and in a very solid voice said, "I love you too, Betty". She then told him that she was going to be fine and if he needed to go that it was alright. There was something about her saying those words...kind of like it was permission...if you know what I mean.
Thank you for your courage in letting us see daily into your world...I know the good it is doing. It validates others who don't have the voice. WRITE on!
pearose said...
Giving permission to let someone die seems a very real need. It happened with my grandmother. I used to take my grandfather to see her every Sunday and it occurred to me one day to squeeze her hand and say, "We're taking good care of grandaddy." Later that day, my Mom went to visit and felt motivated to tell her she could go, if she needed to go. She died the next day. It was her 4 year ordeal in a nursing home that motivated me to get into the elder care side of design because at that time, warehousing was the key concept. She was passively neglected, along with every other resident and she seemed to be hanging on because of grandaddy - the man she had been married to for over 60 years.
Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.
All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.
First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.
She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.
After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.
She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.
She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.
All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.
My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.
And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."
She had lived a long good 95 years, and she thought that was enough.
Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think Your Mom would like for him to be there too.
You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.
Warmest hugs,
Patty
2 comments:
old friend said...
What wise words Patty wrote, truly from someone who has walked ahead of you. In remembering my FIL's journey toward death, what vividly stays with me is in the last few moments, my DMIL kneeling beside the hospital bed (which was in the living room also), and saying "I love you Harry" and in a moment of clarity, he opened his eyes and looked at her and in a very solid voice said, "I love you too, Betty". She then told him that she was going to be fine and if he needed to go that it was alright. There was something about her saying those words...kind of like it was permission...if you know what I mean.
Thank you for your courage in letting us see daily into your world...I know the good it is doing. It validates others who don't have the voice. WRITE on!
pearose said...
Giving permission to let someone die seems a very real need. It happened with my grandmother. I used to take my grandfather to see her every Sunday and it occurred to me one day to squeeze her hand and say, "We're taking good care of grandaddy." Later that day, my Mom went to visit and felt motivated to tell her she could go, if she needed to go. She died the next day. It was her 4 year ordeal in a nursing home that motivated me to get into the elder care side of design because at that time, warehousing was the key concept. She was passively neglected, along with every other resident and she seemed to be hanging on because of grandaddy - the man she had been married to for over 60 years.
Letters
I read your blog every evening. It has made me feel less alone. My mom has LBD. My husband and I moved up from Wyoming to Idaho/Washington State line last summer, so I could take care of her (I'm an only child). I thought she could stay alone at nights in the house she and my dad built on 66 acres in the 1950s and I could visit her during the day ,feed her, clean up after the dog and 9 cats (we took an apartment 3 flights up - she couldn't climb those stairs with her bad hip). She insisted I was not her daughter, despite the neighbors vouching for me.
She had been pretty paranoid for about 3 or 4 years about me, which I found painful on my yearly visits. During the previous year, she'd sometimes call and accuse me of trying to steal her land, though normally we had pretty good weekly conversations. We'd always been so close. My son had moved up from LA to help her out the year before, but after 6 weeks she accused him of planning to murder her to inherit the land. She had a gun, so he moved out quickly and she wouldn't have anything to do with him until I came up for Mother's Day last year.
It was then that I realized how much she had deteriorated. A good neighbor had kept things going while emailing me about her gradual deterioration. Alzheimer's disease, I thought, but so odd. She began having hallucinations of strangers and my late dad in the house having noisy parties. One minute she knew me and knew something was wrong with her ("Oh, you're going to hate me," she'd say sadly. "No I won't, Mom. I love you."), the next minute I was some distant relative trying to take advantage of her.
I took her to the Memory Clinic, and also searched the Internet. I suggested LBD to the doctor there. At first the doctor was skeptical, but after consultation with the psychologist and social worker who also interviewed Mom, that was the diagnosis. She's 83.
I didn't want her to have a second mastectomy in August when a small cancer was found. I felt it would make her worse, but she accused me of wanting her to die, so I relented. She tried to pull out her tubes after surgery and the hospital had to put a watch on her all night. She thought she was in jail. I took her home the next morning. (7 years earlier she'd come through her first mastectomy with flying colors).
--------
Here is a humorous incident that came out of that. About a week after her surgery, the incision began leaking. I had her hold a towel to her chest and took her into the surgeon. As we sat in the waiting room, she turned to me and asked, "Why did you shoot me?" The couple nearby stiffened. "I didn't shoot you, " I gasped. "You had a mastectomy." "You shot me with a bee-bee gun," she said knowingly.
Within a few days, she turned it around to her having shot me and began calling neighbors to help find her a lawyer. After a month of living with her, I went back to sleep at our apartment each night. One morning she called at 5 a.m., in a panic. We went to her rescue. The next night she called me at 3 a.m. The following night the phone rang at 4 a.m. …"Hi, Mom," I answered.
The male voice on the other end identified himself as a deputy sheriff. "You mother is confused and called us," he said. Thank goodness I'd taped my phone number on the telephone for Mom to use. I began staying with her 24-hours a day again. Despite an anti-psychotic for hallucinations (I know that some say don't give them to people with dementia, but Resperdal did eliminate most hallucinations, and I haven't found much in the way of side effects).
At night she thought she was somewhere else and that the house she'd lived in for 50 years was evil. She asked me to find her some place safe to live. 5 weeks later she agreed to try assisted living. There was a cottage for 15 people with dementia, and they had an opening. It has taken some time for her to feel comfortable there, mostly because of her paranoia and practically no short-term memory. But she's happy to see me every afternoon (I'm now her ally, rather than her enemy). I still do some of the things for her I did before, so I feel useful. And I advocate with a staff that truly wants to make her stay there peaceful for her.
I did want to mention to you that Mom had a pressure sore at her tail bone (she slept in her rocking chair until we brought her mattress to the cottage), and it just wouldn't heal because of the bacteria from fecal matter getting into it, until a contract nurse began using the antibiotic Silva Sorb Gel on it. You might mention that product to the nurse who treats Daddy for his pressure sores on his rump.
I think you're doing an amazing thing. I know you are exhausted and filled with grief. I cry every day about my mom (sometimes even when I'm with her - she puts her hand on my hair when I bend to lift her feet up), and I cry again when I read your essays.
Fate has been unkind to her, for she took care of my schizophrenic dad during a 50-year marriage, and only had about 10 years of peace before she began having problems.
And I'm glad you write about the intimate care issues. Those of us who also deal with fecal matter salute you.
Best regards,
Karen
1 comments:
Pauline said... Karen, Thank you so much Hubbie and I do appreciate the letters. It lets us know we are not along in this maze of dementia. Please keep thise cards and letters coming in...
OBYW, there WILL be a Lewy artic;e on a "Fecal Matter Salute" Thart's just too good to pass up...
Kindess Regards,
Pauline
She had been pretty paranoid for about 3 or 4 years about me, which I found painful on my yearly visits. During the previous year, she'd sometimes call and accuse me of trying to steal her land, though normally we had pretty good weekly conversations. We'd always been so close. My son had moved up from LA to help her out the year before, but after 6 weeks she accused him of planning to murder her to inherit the land. She had a gun, so he moved out quickly and she wouldn't have anything to do with him until I came up for Mother's Day last year.
It was then that I realized how much she had deteriorated. A good neighbor had kept things going while emailing me about her gradual deterioration. Alzheimer's disease, I thought, but so odd. She began having hallucinations of strangers and my late dad in the house having noisy parties. One minute she knew me and knew something was wrong with her ("Oh, you're going to hate me," she'd say sadly. "No I won't, Mom. I love you."), the next minute I was some distant relative trying to take advantage of her.
I took her to the Memory Clinic, and also searched the Internet. I suggested LBD to the doctor there. At first the doctor was skeptical, but after consultation with the psychologist and social worker who also interviewed Mom, that was the diagnosis. She's 83.
I didn't want her to have a second mastectomy in August when a small cancer was found. I felt it would make her worse, but she accused me of wanting her to die, so I relented. She tried to pull out her tubes after surgery and the hospital had to put a watch on her all night. She thought she was in jail. I took her home the next morning. (7 years earlier she'd come through her first mastectomy with flying colors).
--------
Here is a humorous incident that came out of that. About a week after her surgery, the incision began leaking. I had her hold a towel to her chest and took her into the surgeon. As we sat in the waiting room, she turned to me and asked, "Why did you shoot me?" The couple nearby stiffened. "I didn't shoot you, " I gasped. "You had a mastectomy." "You shot me with a bee-bee gun," she said knowingly.
Within a few days, she turned it around to her having shot me and began calling neighbors to help find her a lawyer. After a month of living with her, I went back to sleep at our apartment each night. One morning she called at 5 a.m., in a panic. We went to her rescue. The next night she called me at 3 a.m. The following night the phone rang at 4 a.m. …"Hi, Mom," I answered.
The male voice on the other end identified himself as a deputy sheriff. "You mother is confused and called us," he said. Thank goodness I'd taped my phone number on the telephone for Mom to use. I began staying with her 24-hours a day again. Despite an anti-psychotic for hallucinations (I know that some say don't give them to people with dementia, but Resperdal did eliminate most hallucinations, and I haven't found much in the way of side effects).
At night she thought she was somewhere else and that the house she'd lived in for 50 years was evil. She asked me to find her some place safe to live. 5 weeks later she agreed to try assisted living. There was a cottage for 15 people with dementia, and they had an opening. It has taken some time for her to feel comfortable there, mostly because of her paranoia and practically no short-term memory. But she's happy to see me every afternoon (I'm now her ally, rather than her enemy). I still do some of the things for her I did before, so I feel useful. And I advocate with a staff that truly wants to make her stay there peaceful for her.
I did want to mention to you that Mom had a pressure sore at her tail bone (she slept in her rocking chair until we brought her mattress to the cottage), and it just wouldn't heal because of the bacteria from fecal matter getting into it, until a contract nurse began using the antibiotic Silva Sorb Gel on it. You might mention that product to the nurse who treats Daddy for his pressure sores on his rump.
I think you're doing an amazing thing. I know you are exhausted and filled with grief. I cry every day about my mom (sometimes even when I'm with her - she puts her hand on my hair when I bend to lift her feet up), and I cry again when I read your essays.
Fate has been unkind to her, for she took care of my schizophrenic dad during a 50-year marriage, and only had about 10 years of peace before she began having problems.
And I'm glad you write about the intimate care issues. Those of us who also deal with fecal matter salute you.
Best regards,
Karen
1 comments:
Pauline said... Karen, Thank you so much Hubbie and I do appreciate the letters. It lets us know we are not along in this maze of dementia. Please keep thise cards and letters coming in...
OBYW, there WILL be a Lewy artic;e on a "Fecal Matter Salute" Thart's just too good to pass up...
Kindess Regards,
Pauline
Letters
I feel at this time I must say to all of our readers that you have no idea how much you help us by commenting on the blog, or sending us personal emails through the “contact us” link. You all give us the strength to proceed through today and the next day.
I’m so glad I started this blog…it was such an unplanned accident. It started out as a Christmas gift for Hubbie to play with because I know how he loves to write. As with most Christmas presents, it was politely received but not used. So I thought I’d keep it up just in case he decided later to get interested; after all, I had spent a few hundred hours trying to figure out how to post, edit posts, insert photos, all that stuff that with Blogger there are very scant directions. I chased all these things down one by one, even to the point of attempting to learn HTML code….just to find out there was a much easier, simpler ways to accomplish the same things.
Hubbie, I think, - it is a blur to me - had the thought of writing about Lewy. He says I thought it up, but I think he planted the idea, if indeed I did actually move on it first.
I guess what I want to say is; how much we appreciate the comments and letters. I’m going to post one of the letters (with permission, of course), to say thank you and let you know we realize most of you have your own Lewys, that are either right where we are, are approaching, or have reached the final stage of life and departed this world.
Letters:_______________________________________________________
Stella,
You sure have your hands full. For me, having Daddy at the NH was the hardest of all. Selfish reasons, like it kept me from doing anything other than dressing driving sitting and driving. Not very productive. I'm so glad you have a large family there with you.
Unfortunately, you are correct, you must be your patient's advocate. I wonder if the patients would get anything other than minimum required care (if that) if there were no family member bugging the staff to do more.
We are rocking along pretty well here. I may be settling down into the realization that Daddy will be gone soon and I need to not fight that. It just goes against my grain to let it happen though.
Then logic kicks in, and I know he is miserable.
I want my Mommy.
Pauline
_____________________________________________________________
Pauline,
Of course, your want your Mommy. You need your Mommy, but you have the next best thing. You have her teachings. You could not do what you are doing without her life as an example. She had her hands full keeping her little family on the straight and narrow. I'm not sure it always worked with the rascal, Daddy, who loved to "get her goat" with his teasing. A family spending years together creates such a wonderful mural of life. At the time it is being painted, it appears to be bits and pieces of color. A picnic here, hard work there, surely it will go on forever.
No, it constantly changes, and sooner or later it is finished. Looking over the lovely work, all the episodes blended together, the rosy pinks are prominent with the darker colors in the background. The dark colors fade and disappear, leaving the happy memories. Right now you are painting with dark blues and grays. They are important to the finished work. Be proud of your work. Mommy would be proud. She would say, "Well done, my child".
Stella
_____________________________________________________________
All I could do was cry. Every time I read that I loose it. Stella, your letter was wonderful! Thank you so much! It was as if you knew my Mother was a painter.
Pauline.
4 comments:
Stella said...
Ahhh! The last sentence makes me feel like an angel talked through me. I am so honored to be mentioned in your BLOG. That was fun. Thank you.
old friend said...
Stellas' words reminded me of this Corrie Ten Boom poem I have carried with me for most of my life...My Life is but a Weaving
My life is but a weaving
between my Lord and me;
I cannot choose the colors,
He worketh steadily.
Oft times He weaveth sorrow,
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not 'til the loom is silent
and the shuttles cease to fly,
Shall God unroll the canvas
and explain the reason why.
The dark threads are as needful
in the Weaver's skillful hand,
As the threads of gold and silver
in the pattern He has planned.
He knows, He loves, He cares,
nothing this truth can dim.
He gives His very best to those
who leave the choice with Him.
What a blessing to have a circle of caring people joined together, like a triple braided rope...STRONG unbreakable!
pauline said...
Ye shiver me timbers - OLD friend.;-}
Hubbie said...
Oh My God Stella!! Pauline had not shared your e-mail with me before. It is one of the most beautifull things that I have ever read. Make that THE most beautiful. Thank you so much.
I’m so glad I started this blog…it was such an unplanned accident. It started out as a Christmas gift for Hubbie to play with because I know how he loves to write. As with most Christmas presents, it was politely received but not used. So I thought I’d keep it up just in case he decided later to get interested; after all, I had spent a few hundred hours trying to figure out how to post, edit posts, insert photos, all that stuff that with Blogger there are very scant directions. I chased all these things down one by one, even to the point of attempting to learn HTML code….just to find out there was a much easier, simpler ways to accomplish the same things.
Hubbie, I think, - it is a blur to me - had the thought of writing about Lewy. He says I thought it up, but I think he planted the idea, if indeed I did actually move on it first.
I guess what I want to say is; how much we appreciate the comments and letters. I’m going to post one of the letters (with permission, of course), to say thank you and let you know we realize most of you have your own Lewys, that are either right where we are, are approaching, or have reached the final stage of life and departed this world.
Letters:_______________________________________________________
Stella,
You sure have your hands full. For me, having Daddy at the NH was the hardest of all. Selfish reasons, like it kept me from doing anything other than dressing driving sitting and driving. Not very productive. I'm so glad you have a large family there with you.
Unfortunately, you are correct, you must be your patient's advocate. I wonder if the patients would get anything other than minimum required care (if that) if there were no family member bugging the staff to do more.
We are rocking along pretty well here. I may be settling down into the realization that Daddy will be gone soon and I need to not fight that. It just goes against my grain to let it happen though.
Then logic kicks in, and I know he is miserable.
I want my Mommy.
Pauline
_____________________________________________________________
Pauline,
Of course, your want your Mommy. You need your Mommy, but you have the next best thing. You have her teachings. You could not do what you are doing without her life as an example. She had her hands full keeping her little family on the straight and narrow. I'm not sure it always worked with the rascal, Daddy, who loved to "get her goat" with his teasing. A family spending years together creates such a wonderful mural of life. At the time it is being painted, it appears to be bits and pieces of color. A picnic here, hard work there, surely it will go on forever.
No, it constantly changes, and sooner or later it is finished. Looking over the lovely work, all the episodes blended together, the rosy pinks are prominent with the darker colors in the background. The dark colors fade and disappear, leaving the happy memories. Right now you are painting with dark blues and grays. They are important to the finished work. Be proud of your work. Mommy would be proud. She would say, "Well done, my child".
Stella
_____________________________________________________________
All I could do was cry. Every time I read that I loose it. Stella, your letter was wonderful! Thank you so much! It was as if you knew my Mother was a painter.
Pauline.
4 comments:
Stella said...
Ahhh! The last sentence makes me feel like an angel talked through me. I am so honored to be mentioned in your BLOG. That was fun. Thank you.
old friend said...
Stellas' words reminded me of this Corrie Ten Boom poem I have carried with me for most of my life...My Life is but a Weaving
My life is but a weaving
between my Lord and me;
I cannot choose the colors,
He worketh steadily.
Oft times He weaveth sorrow,
And I, in foolish pride,
Forget He sees the upper,
And I the under side.
Not 'til the loom is silent
and the shuttles cease to fly,
Shall God unroll the canvas
and explain the reason why.
The dark threads are as needful
in the Weaver's skillful hand,
As the threads of gold and silver
in the pattern He has planned.
He knows, He loves, He cares,
nothing this truth can dim.
He gives His very best to those
who leave the choice with Him.
What a blessing to have a circle of caring people joined together, like a triple braided rope...STRONG unbreakable!
pauline said...
Ye shiver me timbers - OLD friend.;-}
Hubbie said...
Oh My God Stella!! Pauline had not shared your e-mail with me before. It is one of the most beautifull things that I have ever read. Make that THE most beautiful. Thank you so much.
Letters
The Carmen Foundation
“Louie Who…?”
…was my initial response in 2004 during a consultation with our fifth neurologist when, after another exhaustive exam, he suggested that my 80 year old husband, along with Parkinson’s Disease (PD), is probably being challenged by Lewy Body Disease (LBD).
After weeks Googling, I learned much more than I ever wanted to about the myriad of misfolded proteins that are randomly zapping Milton’s neurons with no antidote in sight.
Though Parkinson’s and Alzheimer’s have become household words, Lewy Body Dementias remain under the radar even though they are the second most common form of dementia in the elderly-- affecting over 1.5 million individuals and their caring families—even though the disease has been recognized since the early 1900s while Friederich H. Lewy was studying Parkinson’s Disease.
For the last four years, we have been using our small Carmen Foundation to support the research being conducted at the MassGeneral Institute for Neurodegenerative Disease (MIND) by Drs. Anne Young, Brad Hyman, Alex Kazantsev as well as the Michael J. Fox Foundation and the Lewy Body Disorders Association (LBDA). This intense immersion has given me hope that antidotes are on the horizon to stall, cure and prevent many neurological diseases.
Since the work at MIND focuses on the protein (alpha synuclein) implicated in the dementia found in both Lewy Body disorders (now considered an adjunct of Parkinson’s) as well as Parkinson’s, we hope to partner with other organizations and individuals affected or interested in being part of this 21st Century research.
We are calling this project:
BEYOND THE BLOOD/BRAIN BARRIER: Antidotes for PD and LBD
The human brain is encased in a thick skull to protect it from trauma. It is also defended internally from noxious chemicals and toxins by the blood-brain barrier, an intricate system of impermeable blood vessels that prevents most substances from entering the brain from the bloodstream.
Like the walls of a castle, this system deters the brain’s chemical enemies, but it is unable to distinguish between harmful substances and those that might be therapeutic. The blood-brain barrier is therefore an enormous challenge in the development of treatments for many brain disorders.
The Carmen Foundation is committing $300,000 as a Challenge Grant to MIND and their collaborators around the world to raise another $700,000 to proceed with creating a new class of antidotes using mouse models of PD and LBD.
Why MIND?
MIND researchers, led by Drs. Young and Kazantsev, have had success finding compounds that can cross the blood brain barrier and look to be effective in mouse models of Huntington's disease. Their goal is to replicate this success in LBD and PD.
Please join us in this cutting edge 21st Century philanthropic effort. Each of us can make a difference that will benefit future generations.
Sincerely,
Marjorie Carmen
_____________________________________________________________________________
March 10, 2008
To: The LBDA
From: The Carmen Foundation
Once again, we are pleased to place our support in the LBDA by enclosing our check in the amount of $50,000. We are confident that our contribution will be used in the best possible manner and therefore, we are not designating funding a specific project.
Observing that the organization’s expansion gives us hope that with more public awareness of Lewy Body disorders, antidotes are closer to being developed.
We request that any projects using our funding will be noted in the following manner: “…Sponsored by The Carmen Foundation, committed to 21st Century Neurological Research and Solutions.”
Our hope is that the association will collaborate with other organizations dedicated to finding solutions for the myriad of neurological issues that continue to plague our ageing population.
Sincerely,
Marjorie Carmen, M.Ed.
Co-Trustee, The Carmen Foundation
_________________________________________________________________________________
http://www.mghmind.org/support.htm ..Support The MassGeneral Institute for Neurodegenerative Disease
2 comments:
Stella said...
Thank you, Marjorie, for all you do. Also for coming on here while Pauline is caring for her father. You have given us much to consider and work with. Four years later and I am still hearing, "What is Lewy Body?". I suppose It will require a U.S. Senator or a spouse to be afflicted before it sweeps the country for recognition. You have shown that much is being done with a long way to go.
Anonymous said...
Thank you Marjorie!
This is wonderful news! I'm a LBDA volunteer in Boston, MA. I've met you before - in April 2007 during the Neurologist Convention. We have a LBD local support group that has become quite active - we meet monthly in Jamaica Plain, MA. Should you want to work together in upcoming MA events - feel free to contact me. I have a few guests who are 'in the works' to attend our local support group meetings that you may be interested in. Pauline has my email. :) Victoria
“Louie Who…?”
…was my initial response in 2004 during a consultation with our fifth neurologist when, after another exhaustive exam, he suggested that my 80 year old husband, along with Parkinson’s Disease (PD), is probably being challenged by Lewy Body Disease (LBD).
After weeks Googling, I learned much more than I ever wanted to about the myriad of misfolded proteins that are randomly zapping Milton’s neurons with no antidote in sight.
Though Parkinson’s and Alzheimer’s have become household words, Lewy Body Dementias remain under the radar even though they are the second most common form of dementia in the elderly-- affecting over 1.5 million individuals and their caring families—even though the disease has been recognized since the early 1900s while Friederich H. Lewy was studying Parkinson’s Disease.
For the last four years, we have been using our small Carmen Foundation to support the research being conducted at the MassGeneral Institute for Neurodegenerative Disease (MIND) by Drs. Anne Young, Brad Hyman, Alex Kazantsev as well as the Michael J. Fox Foundation and the Lewy Body Disorders Association (LBDA). This intense immersion has given me hope that antidotes are on the horizon to stall, cure and prevent many neurological diseases.
Since the work at MIND focuses on the protein (alpha synuclein) implicated in the dementia found in both Lewy Body disorders (now considered an adjunct of Parkinson’s) as well as Parkinson’s, we hope to partner with other organizations and individuals affected or interested in being part of this 21st Century research.
We are calling this project:
BEYOND THE BLOOD/BRAIN BARRIER: Antidotes for PD and LBD
The human brain is encased in a thick skull to protect it from trauma. It is also defended internally from noxious chemicals and toxins by the blood-brain barrier, an intricate system of impermeable blood vessels that prevents most substances from entering the brain from the bloodstream.
Like the walls of a castle, this system deters the brain’s chemical enemies, but it is unable to distinguish between harmful substances and those that might be therapeutic. The blood-brain barrier is therefore an enormous challenge in the development of treatments for many brain disorders.
The Carmen Foundation is committing $300,000 as a Challenge Grant to MIND and their collaborators around the world to raise another $700,000 to proceed with creating a new class of antidotes using mouse models of PD and LBD.
Why MIND?
MIND researchers, led by Drs. Young and Kazantsev, have had success finding compounds that can cross the blood brain barrier and look to be effective in mouse models of Huntington's disease. Their goal is to replicate this success in LBD and PD.
Please join us in this cutting edge 21st Century philanthropic effort. Each of us can make a difference that will benefit future generations.
Sincerely,
Marjorie Carmen
_____________________________________________________________________________
March 10, 2008
To: The LBDA
From: The Carmen Foundation
Once again, we are pleased to place our support in the LBDA by enclosing our check in the amount of $50,000. We are confident that our contribution will be used in the best possible manner and therefore, we are not designating funding a specific project.
Observing that the organization’s expansion gives us hope that with more public awareness of Lewy Body disorders, antidotes are closer to being developed.
We request that any projects using our funding will be noted in the following manner: “…Sponsored by The Carmen Foundation, committed to 21st Century Neurological Research and Solutions.”
Our hope is that the association will collaborate with other organizations dedicated to finding solutions for the myriad of neurological issues that continue to plague our ageing population.
Sincerely,
Marjorie Carmen, M.Ed.
Co-Trustee, The Carmen Foundation
_________________________________________________________________________________
http://www.mghmind.org/support.htm ..Support The MassGeneral Institute for Neurodegenerative Disease
2 comments:
Stella said...
Thank you, Marjorie, for all you do. Also for coming on here while Pauline is caring for her father. You have given us much to consider and work with. Four years later and I am still hearing, "What is Lewy Body?". I suppose It will require a U.S. Senator or a spouse to be afflicted before it sweeps the country for recognition. You have shown that much is being done with a long way to go.
Anonymous said...
Thank you Marjorie!
This is wonderful news! I'm a LBDA volunteer in Boston, MA. I've met you before - in April 2007 during the Neurologist Convention. We have a LBD local support group that has become quite active - we meet monthly in Jamaica Plain, MA. Should you want to work together in upcoming MA events - feel free to contact me. I have a few guests who are 'in the works' to attend our local support group meetings that you may be interested in. Pauline has my email. :) Victoria
Letters
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Hi Pauline, It’s Patty here. Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.
All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.
First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.
She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.
After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.
She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.
She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.
All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.
My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.
And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."
She had lived a long good 95 years, and she thought that was enough.
Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think your Mom would like for him to be there too.
You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.
Warmest hugs,
Patty
.
.
Hi Pauline, It’s Patty here. Even though I don't write to you a lot, I think of you every day b/c I keep such a close watch on Lewy thru your journal. I have been so happy to see from the comments that you have found many good friends to walk this hard trail with you. And in doing that they help themselves as well.
All the info from experienced hospice people does help at this point I think. It really helped me, b/c I had never been around someone who was going thru the final stages of dying until my mom was in hospice for a short while before she died in 2004. It's not really the same as it is for you, since her mind was fine, just the body totally worn out. But she did follow almost all of the various steps that are suggested in those info books. I'll give you a few quick examples.
First, she loved basketball with a passion. But during those last several weeks, when the Sweet Sixteen tournament games were on TV, she didn't even want to have the TV on.
She didn't want to see any visitors, even the few close friends who had not predeceased her. She didn't even want my daughter to come from Texas with her new baby boy, Mom's first great-grandchild, who had been born on Mom's B'day just several months before. I don't know if she didn't want anyone to see her in an awful condition (in diapers, with bootees on her feet, with her skin already stretched over her bones like a living skeleton), or whether she simply didn't have any energy left to see people for even a few minutes.
After living in the same place for over 30 years, and resolutely staying there no matter what, she said from her bed in the hospice/rehab center that she didn't care what we did with anything, we could just throw it out in the dumpster.
She didn't talk about dying exactly. She did wonder aloud if she would see my daddy and Schlitzy, the dog they had had when they first married, that they were so crazy about.
She ate very little during her final weeks, tapering down to nearly nothing and just a little water. Finally, not even water. When she had hardly touched even soup for days, she suddenly sat up one evening and ate an entire very large piece of pineapple cake. I was amazed. She obviously enjoyed every bite of it allot and was talking, very perky. It was almost like a party. (A going away party?) It was the last thing she ever ate.
All though she slept much of the time, she suddenly began to moan and toss her head around. I do not think she was in physical discomfort, but it is really upsetting to see them that way. So they gave her the anti-anxiety meds, and it did settle her right down. It's hard to squirm out of a body that you've been in for so long, even if it's a wreck.
So, as I say, I found that she did most of the things that dying people often do. The hospice staff was the most incredible and wonderfully caring group of people I've ever known. Without them I would have been totally adrift. Mom loved them too. It made a peaceful loving atmosphere for her in those last few weeks.
My heart goes out to you day by day. All this takes something out of you that is never quite the same again. And it leaves you with a very deep exhaustion that doesn't give up easily either, even weeks, even months after the journey is over. Be patient with yourself. You're right to stay occupied in whatever way you can. I've always felt that just keeping my hands going on something has helped me thru some very difficult times. It will be helpful for you to move next spring.
And, there is a silver lining, or there was for me. Mom died on a Fri. morning. On Sunday morning I was sitting alone in her apartment, drinking a cup of coffee while I sat on the sofa and looked out over the city of Little Rock, thinking of all the remaining loose ends to be taken care of. I was exhausted, but it was a quiet lovely morning in June. And then I really felt her there with me. I "saw" her put her hand right over mine and she patted it, and she told me "It's all right, sweet. Everything is fine now."
She had lived a long good 95 years, and she thought that was enough.
Like Lewy, my daddy was also a WWII vet, and he was buried many years ago in the Nat'l Cemetery at Little Rock. It is a beautiful place and always perfectly maintained. Mom is buried there with him now. I know "where to put them" is more complicated for you now, but I think Lewy would like to be in the Nat'l Cemetery, and I think your Mom would like for him to be there too.
You are all much in my thoughts and in my prayers. You have a true jewel in Hubbie. I wish I were close by so that I could come give you a break now and then.
Warmest hugs,
Patty
Lewy’s Final Farewell
Friday was a cold and overcast day, appropriate for a sad farewell. We were not able to arrange the gun salute, but we did find out that it could have happened if the funeral director had been more resourceful. We found out too late. So yes, you can get the salute, you just have to know where to find the people that do it. The VFW or American Legion have posts that do these things. It is the regular military that does taps and the flag presentation.
We were so fortunate to get a live bugler rather than a taped version. He did a beautiful job. The flag presentation group was so very precise, so very respectful, not enough words can say how much it meant. The Navy Major that presented the flag was so kind. Perhaps and I guess certainly they get lots of practice.
Mostly we were glad that Daddy got in the Nashville National Cemetery in Madison. I watched that cemetery grow from just a few head stones to the monster it is today with over 36,000 of our military buried there.
We want to share the ceremony pictures with all our virtual friends, and to say thank you for reading. Thank you for caring. Thank you all for being there with us.
So many who have gone before:
Hubbie reads from The Prophet:
A few final words from Hubbie's brother:
Air Force Bugler playing Taps:
Saluting through Taps:
Folding of the Flag:
Flag's final fold and hand off:
Folded flag presented to the Naval Officer:
The Naval Officer presents the Flag to Pauline on behalf of a Greatful Nation:
The Cemetery Officer presents Daddy's final resting place to Hubbie and Pauline:
Daddy's view:
Please sign the virtual Visitation Log
3 comments:
Laine said...
Beautiful.
And, while he definitely does have an impeccable view from his resting place...imagine the real view he has now.
Peace.
pearose said...
You honored your father well, Pauline. The honor guard did the same - very respectful. The female officer that handed you the flag seemed amazingly sincere with her thanks for your Dad's service in World War II. Very touching.
Having a beautiful resting place is the very least our veterans deserve and the Madison National Cemetery is simply stunning.
Thanks for sharing his life and death with us. Your father is at peace now.
Stella said...
A life which is worthy of the beautiful setting for his final resting place.
"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight". K.G.
We were so fortunate to get a live bugler rather than a taped version. He did a beautiful job. The flag presentation group was so very precise, so very respectful, not enough words can say how much it meant. The Navy Major that presented the flag was so kind. Perhaps and I guess certainly they get lots of practice.
Mostly we were glad that Daddy got in the Nashville National Cemetery in Madison. I watched that cemetery grow from just a few head stones to the monster it is today with over 36,000 of our military buried there.
We want to share the ceremony pictures with all our virtual friends, and to say thank you for reading. Thank you for caring. Thank you all for being there with us.
So many who have gone before:
Hubbie reads from The Prophet:
A few final words from Hubbie's brother:
Air Force Bugler playing Taps:
Saluting through Taps:
Folding of the Flag:
Flag's final fold and hand off:
Folded flag presented to the Naval Officer:
The Naval Officer presents the Flag to Pauline on behalf of a Greatful Nation:
The Cemetery Officer presents Daddy's final resting place to Hubbie and Pauline:
Daddy's view:
Please sign the virtual Visitation Log
3 comments:
Laine said...
Beautiful.
And, while he definitely does have an impeccable view from his resting place...imagine the real view he has now.
Peace.
pearose said...
You honored your father well, Pauline. The honor guard did the same - very respectful. The female officer that handed you the flag seemed amazingly sincere with her thanks for your Dad's service in World War II. Very touching.
Having a beautiful resting place is the very least our veterans deserve and the Madison National Cemetery is simply stunning.
Thanks for sharing his life and death with us. Your father is at peace now.
Stella said...
A life which is worthy of the beautiful setting for his final resting place.
"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight". K.G.
Squirrel Anyone?
The funeral director called today to confirm the time of the ceremony. Unfortunately he said there would be no gun salute “because we are in war time”. Only active duty and retired military get the salute during war according to him.
Seems a bit odd. I would think every city with a military cemetery would have enough retired or ex military to perform the salute. I’m going to sick my nephew on this first thing in the morning. He used to be part of an honor guard, maybe he can figure out how to make it happen….
Of course being redneck hillbillies we could just carry our own guns – maybe shoot up some vittles while we’re there.
3 comments:
Stella said...
One of Edward's favorite stories was about rounding up a group of ex GIs to be honor guard for a veteran in a small town nearby. He was working in his father's Sash and Door factory at the time and being the boss's son, he announced he was taking off for a few hours to help bury a fellow soldier and he was taking two of the other workers with him. The services were complete with "Taps", patriotic music, salute with the rifles, and folding of the flag. Edward was proud to have been a part of the touching ceremony. On the way home, Edward turned to one of the guys he had recruited to help and asked, "Hey, Speck, which branch of the service were you in?" Speck answered, "I didn't serve, my number was in the next batch after the war was finished". ...
"Where there is a will, there is a way"..
kddove said...
maybe they are trying to conserve bullets, since all of this war-time stuff sure isn't cheap...
Denise said...
We had a similar situation when my father, a 30 year navy veteran and Pearl Harbor survivor, passed away last October. He, too, was to be buried with full military honors as was due him. The day before the funeral we were told that the navy did not have the personnel to honor my father; we were devestated. My brother, a Coast Guard veteran, called every base up and down the California coast and demanded that the navy send a guard out to honor our father. The navy complied and my father had a 21 gun salute, folding of the flag (one that was flown over the Arizona on 9-11) playing of the navy hymn, taps and someone to present the flag to our mother. All I can tell you is don't believe what they're telling you, the squeeky wheel oiled.
Seems a bit odd. I would think every city with a military cemetery would have enough retired or ex military to perform the salute. I’m going to sick my nephew on this first thing in the morning. He used to be part of an honor guard, maybe he can figure out how to make it happen….
Of course being redneck hillbillies we could just carry our own guns – maybe shoot up some vittles while we’re there.
3 comments:
Stella said...
One of Edward's favorite stories was about rounding up a group of ex GIs to be honor guard for a veteran in a small town nearby. He was working in his father's Sash and Door factory at the time and being the boss's son, he announced he was taking off for a few hours to help bury a fellow soldier and he was taking two of the other workers with him. The services were complete with "Taps", patriotic music, salute with the rifles, and folding of the flag. Edward was proud to have been a part of the touching ceremony. On the way home, Edward turned to one of the guys he had recruited to help and asked, "Hey, Speck, which branch of the service were you in?" Speck answered, "I didn't serve, my number was in the next batch after the war was finished". ...
"Where there is a will, there is a way"..
kddove said...
maybe they are trying to conserve bullets, since all of this war-time stuff sure isn't cheap...
Denise said...
We had a similar situation when my father, a 30 year navy veteran and Pearl Harbor survivor, passed away last October. He, too, was to be buried with full military honors as was due him. The day before the funeral we were told that the navy did not have the personnel to honor my father; we were devestated. My brother, a Coast Guard veteran, called every base up and down the California coast and demanded that the navy send a guard out to honor our father. The navy complied and my father had a 21 gun salute, folding of the flag (one that was flown over the Arizona on 9-11) playing of the navy hymn, taps and someone to present the flag to our mother. All I can tell you is don't believe what they're telling you, the squeeky wheel oiled.
Thank You
I wish to thank everyone that left messages on our visitation log, and especially thank all of you who came to our non-virtual visitation.
You have all been so kind with all the emails, phone calls, and food…goodness gracious…the food! Please know that your outpouring of affection has touched us both deeply.
But now our story is over except for some minor details.
Daddy’s brain harvest went smoothly, thanks to everyone at Hospice, the funeral home, Vanderbilt, and Harvard.
We are waiting on the paperwork/permits etc. to cremate his remains. There is some question as to the availability of a space for him at the local National Cemetery in Madison. He will be receiving full Military Honors at his burial.
We will take some photos of the ceremony and post them in the e-book that was requested / suggested by so many of you. In the next few days, I will have the Living with Lewy Body e-book prepared including all of the posts about Lewy, all the comments, and letters, with some added photos (the 64 ½ Candy Apple Red Mustang, among others).
Once it is completed, it will be permanently linked from www.Streetalker.com.
As far as the Living with Lewy Body Daily Journal goes…If someone wants to take it over and make it their own, please contact me.
Again, Thank you all for reading and supporting us in our time of need.
And Mark, I’m so sorry to hear about your Mum’s passing. Take heart that she is no longer suffering from this horrible disease.
Perhaps Daddy’s brain will help find a cure.
If you have not signed the virtual Visitation Log, please do.
3 comments:
kddove said...
Thank you for sharing the lewy daddy story... it was the first thing i read every morning. sad, happy, hopeful, hilarious at times. i will miss him, though i only really met him twice. when the food runs out, can i take you to lunch?
love, kd
Hubbie said...
Hubbie here.
It’s Monday morning, sunny and 50 degrees. Pauline is still asleep. I’m taking this day to finish up some loose ends and prepare to go back to work tomorrow. I just read Pauline’s Thank You post and wanted to add my thanks as well.
Mark I am so sorry to hear about your Mum. Hold that boy of yours tight as we hold you in our hearts. My very deep and heartfelt thanks to all of you for your participation in this blog. Pauline’s original idea was for it to be a present for me. I have never in my life been so glad that I turned something down. The writing and reading the responses from all of you has been such a great aid to Pauline through these last few months.
We still have some details to go through. Pauline is putting together the e-book version of the blog for posting. I still have the urge to do a hardcover version, even if it is just a copy for me. And of course we still have the big thing to do………….learn to live without Daddy/Lewy around. I got up to make coffee this morning and found myself momentarily surprised when I looked over at his bed and saw a couch there.
So we’ll miss Doug just like we miss Pauline’s mother and my Dad. We will also miss you. We hope someone will take up writing stories of their Lewy. Pauline may even move on to write about other stuff. But it won’t be the same. Things change. Life moves on. Thank you so much for being part of ours.
Boone.
old friend said...
I am so glad that you launched this blog, Pauline. And while I will miss that daily connection to you through your words, I know we'll just move on together in another way. Bless you for your courage, your vulnerability, your sense of humor and your faithfulness...all these speak to how much you loved your Daddy.
And to you, Hubbie, love you for standing by Pauline and Daddy...now you two go on about this business of living, there's weeding and hoeing to get to....
You have all been so kind with all the emails, phone calls, and food…goodness gracious…the food! Please know that your outpouring of affection has touched us both deeply.
But now our story is over except for some minor details.
Daddy’s brain harvest went smoothly, thanks to everyone at Hospice, the funeral home, Vanderbilt, and Harvard.
We are waiting on the paperwork/permits etc. to cremate his remains. There is some question as to the availability of a space for him at the local National Cemetery in Madison. He will be receiving full Military Honors at his burial.
We will take some photos of the ceremony and post them in the e-book that was requested / suggested by so many of you. In the next few days, I will have the Living with Lewy Body e-book prepared including all of the posts about Lewy, all the comments, and letters, with some added photos (the 64 ½ Candy Apple Red Mustang, among others).
Once it is completed, it will be permanently linked from www.Streetalker.com.
As far as the Living with Lewy Body Daily Journal goes…If someone wants to take it over and make it their own, please contact me.
Again, Thank you all for reading and supporting us in our time of need.
And Mark, I’m so sorry to hear about your Mum’s passing. Take heart that she is no longer suffering from this horrible disease.
Perhaps Daddy’s brain will help find a cure.
If you have not signed the virtual Visitation Log, please do.
3 comments:
kddove said...
Thank you for sharing the lewy daddy story... it was the first thing i read every morning. sad, happy, hopeful, hilarious at times. i will miss him, though i only really met him twice. when the food runs out, can i take you to lunch?
love, kd
Hubbie said...
Hubbie here.
It’s Monday morning, sunny and 50 degrees. Pauline is still asleep. I’m taking this day to finish up some loose ends and prepare to go back to work tomorrow. I just read Pauline’s Thank You post and wanted to add my thanks as well.
Mark I am so sorry to hear about your Mum. Hold that boy of yours tight as we hold you in our hearts. My very deep and heartfelt thanks to all of you for your participation in this blog. Pauline’s original idea was for it to be a present for me. I have never in my life been so glad that I turned something down. The writing and reading the responses from all of you has been such a great aid to Pauline through these last few months.
We still have some details to go through. Pauline is putting together the e-book version of the blog for posting. I still have the urge to do a hardcover version, even if it is just a copy for me. And of course we still have the big thing to do………….learn to live without Daddy/Lewy around. I got up to make coffee this morning and found myself momentarily surprised when I looked over at his bed and saw a couch there.
So we’ll miss Doug just like we miss Pauline’s mother and my Dad. We will also miss you. We hope someone will take up writing stories of their Lewy. Pauline may even move on to write about other stuff. But it won’t be the same. Things change. Life moves on. Thank you so much for being part of ours.
Boone.
old friend said...
I am so glad that you launched this blog, Pauline. And while I will miss that daily connection to you through your words, I know we'll just move on together in another way. Bless you for your courage, your vulnerability, your sense of humor and your faithfulness...all these speak to how much you loved your Daddy.
And to you, Hubbie, love you for standing by Pauline and Daddy...now you two go on about this business of living, there's weeding and hoeing to get to....
Lewy's Last Night
Lewy is safely tucked away at the local hospice. Out of fear of loosing him in the middle of the night, and the extra 2-3 hours it would take to get him pronounced and transported into Vanderbilt, I wanted him moved here so we could have a bit more time should a hiccup happen.
It’s almost midnight. I’ve been sleeping in the floor next to him. Even though this little trundle bed is not very comfortable, it is the best sleep I’ve had since Sunday night. No doubt it is just one less worry gone from my mind.
The doctor who examined him when he arrived said we maybe had 48 hours, but listening to his breathing…I don’t know…it is getting slower; definitely slower. For some reason the eyes that had not opened in days opened during the ambulance ride here. We tried to shut them, but they refused to be closed. So now his glazed eyes stare at the ceiling.
2:50 AM
I had been lying on the bed in the floor next to Daddy, listening to his every breath. They are now separated by many seconds and are very shallow. I thought I’d look at his feet to see this marbling the doctor told me I would see.
His feet were now cold. They’ve been really hot for the last couple of days.
I looked up at his face, still the cold stare at the ceiling. He took a tiny breath.
And that was it. I waited for the next one, but it did not come. I felt his chest, and then the jugular, I could not detect any beat at all. I went into the hall and told the nurse I thought he had passed. She came in directly and listened, then took her flash light and pointed it into each eye. There was no reflex.
She reached up and closed his eye lids. She pronounced him at 2:56 AM.
I called Hubbie.
The Hospice ladies faxed and called Harvard, Faxed and called Vanderbilt. I called the funeral home for the transport vehicle.
It is now 5:40AM. We are home, and the Funeral Director called and said the body was delivered, the receiving personnel knew who Daddy was and exactly what to do.
So Daddy is on his way to Harvard. Do great things, Daddy, Do great things.
14 comments:
pearose said...
Good night, Lewy. It's been a pleasure knowing you.
Dee said...
Rest in peace now dear Mr Lewy, i'll miss you.
Anonymous said...
God bless you, Pauline and Hubbie for your loving kindness to your Daddy. You ran the race alongside him and honored and respected him...may your rest be peaceful and deep now.
3rd Wife said...
I am proud to have known Lewy.
Pauline and Hubbie--you did good.
“Death ends a life, not a relationship.” Robert Benchley
I think a little bit of Lewy will on in all of us who followed his struggles...
3rd Wife said...
that was supposed to be "live on in all of us..."
typing through tears..
kddove said...
He knows how much you loved him. You proved it every day.
Dee said...
Deeeeeep breath...grabbing the tissue box...letting out a sigh of relief that Lewy's iron-clad grip on him has been released.
My very best to all of you.
hassana said...
Your love will always be with him, may he rest in peace, God bless you Pauline and Hubbie
Stella said...
My prayer was, "Whatever is best for Daddy". My prayer was answered. Why do I weep? My prayer is now one of thanksgiving.
Rose said...
As I've read your blog, I've chuckled at the old stories and at the spark that seemed to be in your father until the very end. Then I grieved as the spark was being extinguished. I won't forget him.
You have my sympathy and my deep respect. Despite how hard it was, you stayed the course until the end and took wonderful care of your father.
Anonymous said...
I accidently found this site when my husbands grandmother was diagnosed with LBD last month. I read every entry. I laughed and cried, but right now I feel sad. What you did for your father was nothing short of wonderful and I can only hope my husand and I can provide as much love and understanding to our "lewy" as you guys did. May God bless you both.
swruthie said...
Hope hubby told you I came by. Glad you were resting. Hadn't gotten "the word" - phone call came after I had already gone downtown Th pm, then didn't get "final word" till after I stopped by. Will try to come by Sat. Can't promise - will call if I don't make it. Thinking of you! Deep breath.
Mark said...
God bless....my mum who I told you about with LBD passed away yesterday 9th May about 1820 UK time, I had visited in the lunch time and prayed aloud for her and told her I loved her and not to be afriad, that God loved her, her breathing was not good. I returned to work at 2pm and felt the urge to return to her at 6pm I walked into the room where her resting position had just been changed, she was wearing a oxygen mask and had passed away as I walked in, I called the nurse and awaited the arrival of dad and siblings, I miss her so much, I had to break the news to my 8yr old son , it was awful we slept in the same bed and cried ourselves to sleep.......
Stella said...
To Mark. May God bless you and give you and your son peace as you tend to the duties required. Thank you for sharing your sadness with us... May it lessen your burden a wee bit.
It’s almost midnight. I’ve been sleeping in the floor next to him. Even though this little trundle bed is not very comfortable, it is the best sleep I’ve had since Sunday night. No doubt it is just one less worry gone from my mind.
The doctor who examined him when he arrived said we maybe had 48 hours, but listening to his breathing…I don’t know…it is getting slower; definitely slower. For some reason the eyes that had not opened in days opened during the ambulance ride here. We tried to shut them, but they refused to be closed. So now his glazed eyes stare at the ceiling.
2:50 AM
I had been lying on the bed in the floor next to Daddy, listening to his every breath. They are now separated by many seconds and are very shallow. I thought I’d look at his feet to see this marbling the doctor told me I would see.
His feet were now cold. They’ve been really hot for the last couple of days.
I looked up at his face, still the cold stare at the ceiling. He took a tiny breath.
And that was it. I waited for the next one, but it did not come. I felt his chest, and then the jugular, I could not detect any beat at all. I went into the hall and told the nurse I thought he had passed. She came in directly and listened, then took her flash light and pointed it into each eye. There was no reflex.
She reached up and closed his eye lids. She pronounced him at 2:56 AM.
I called Hubbie.
The Hospice ladies faxed and called Harvard, Faxed and called Vanderbilt. I called the funeral home for the transport vehicle.
It is now 5:40AM. We are home, and the Funeral Director called and said the body was delivered, the receiving personnel knew who Daddy was and exactly what to do.
So Daddy is on his way to Harvard. Do great things, Daddy, Do great things.
14 comments:
pearose said...
Good night, Lewy. It's been a pleasure knowing you.
Dee said...
Rest in peace now dear Mr Lewy, i'll miss you.
Anonymous said...
God bless you, Pauline and Hubbie for your loving kindness to your Daddy. You ran the race alongside him and honored and respected him...may your rest be peaceful and deep now.
3rd Wife said...
I am proud to have known Lewy.
Pauline and Hubbie--you did good.
“Death ends a life, not a relationship.” Robert Benchley
I think a little bit of Lewy will on in all of us who followed his struggles...
3rd Wife said...
that was supposed to be "live on in all of us..."
typing through tears..
kddove said...
He knows how much you loved him. You proved it every day.
Dee said...
Deeeeeep breath...grabbing the tissue box...letting out a sigh of relief that Lewy's iron-clad grip on him has been released.
My very best to all of you.
hassana said...
Your love will always be with him, may he rest in peace, God bless you Pauline and Hubbie
Stella said...
My prayer was, "Whatever is best for Daddy". My prayer was answered. Why do I weep? My prayer is now one of thanksgiving.
Rose said...
As I've read your blog, I've chuckled at the old stories and at the spark that seemed to be in your father until the very end. Then I grieved as the spark was being extinguished. I won't forget him.
You have my sympathy and my deep respect. Despite how hard it was, you stayed the course until the end and took wonderful care of your father.
Anonymous said...
I accidently found this site when my husbands grandmother was diagnosed with LBD last month. I read every entry. I laughed and cried, but right now I feel sad. What you did for your father was nothing short of wonderful and I can only hope my husand and I can provide as much love and understanding to our "lewy" as you guys did. May God bless you both.
swruthie said...
Hope hubby told you I came by. Glad you were resting. Hadn't gotten "the word" - phone call came after I had already gone downtown Th pm, then didn't get "final word" till after I stopped by. Will try to come by Sat. Can't promise - will call if I don't make it. Thinking of you! Deep breath.
Mark said...
God bless....my mum who I told you about with LBD passed away yesterday 9th May about 1820 UK time, I had visited in the lunch time and prayed aloud for her and told her I loved her and not to be afriad, that God loved her, her breathing was not good. I returned to work at 2pm and felt the urge to return to her at 6pm I walked into the room where her resting position had just been changed, she was wearing a oxygen mask and had passed away as I walked in, I called the nurse and awaited the arrival of dad and siblings, I miss her so much, I had to break the news to my 8yr old son , it was awful we slept in the same bed and cried ourselves to sleep.......
Stella said...
To Mark. May God bless you and give you and your son peace as you tend to the duties required. Thank you for sharing your sadness with us... May it lessen your burden a wee bit.
In Memoriam
Date: May 9, 2008
Douglas Wilford Cotton. (AKA "Lewy")
Born January 13, 1924 in Cottontown, TN
Died May 9, 2008 Age 84
Douglas passed away at the Alive Hospice Center in Madison TN. He had been living in his daughter’s and son in laws' home in Cottontown through his last 11 years of a 12 year battle with Lewy Body Dementia.
He is survived by his daughter, Kathi Pauline, and his son in law, Boone Gregory. He is also survived by his grandson Douglas III “Trey” and his wife Bonnie Cotton of Gallatin, and his sister Maynard Estelle “Tom” Scott of Gallatin.
Douglas was preceded in death by: his wife, Pauline; his son, Douglas Jr. “Sonny”; his grand daughter Joy Lynn Cotton; his parents Vernie Lou and John William Cotton; and his sister Emma “Tinker” Louine Blankenship.
He served in the United States Navy’s 7th Fleet during World War II in the South Pacific aboard the USS Currituck (AV-7)
After the war he and his bride settled in Madison, TN. where they raised their two children. He owned a real estate company and through the 1960s owned his own residential construction company. After being employed by American Motors and then a local Ford Dealership, he opened his own company “Mobile Housing Sales, Inc." in Goodlettsville. He kept that business from the late 60’s through his retirement in 1980.
He and his wife, Pauline moved to Naples Florida were they spent the rest of their lives together. After Pauline passed away in 1997, Douglas moved in with his daughter and son in law back in Tennessee.
He was officially diagnosed with LBD in June 2005.
His brain is being donated to the Harvard Brain Tissue Resource Center for research into causes and cures of Neurological disorders.
For local friends and relatives, visitation will be held at his home in Cottontown on Saturday May 10 between the hours of 3PM and 6PM.
For Virtual and local friends, we request that you please sign our Visitation Log.
Douglas Wilford Cotton. (AKA "Lewy")
Born January 13, 1924 in Cottontown, TN
Died May 9, 2008 Age 84
Douglas passed away at the Alive Hospice Center in Madison TN. He had been living in his daughter’s and son in laws' home in Cottontown through his last 11 years of a 12 year battle with Lewy Body Dementia.
He is survived by his daughter, Kathi Pauline, and his son in law, Boone Gregory. He is also survived by his grandson Douglas III “Trey” and his wife Bonnie Cotton of Gallatin, and his sister Maynard Estelle “Tom” Scott of Gallatin.
Douglas was preceded in death by: his wife, Pauline; his son, Douglas Jr. “Sonny”; his grand daughter Joy Lynn Cotton; his parents Vernie Lou and John William Cotton; and his sister Emma “Tinker” Louine Blankenship.
He served in the United States Navy’s 7th Fleet during World War II in the South Pacific aboard the USS Currituck (AV-7)
After the war he and his bride settled in Madison, TN. where they raised their two children. He owned a real estate company and through the 1960s owned his own residential construction company. After being employed by American Motors and then a local Ford Dealership, he opened his own company “Mobile Housing Sales, Inc." in Goodlettsville. He kept that business from the late 60’s through his retirement in 1980.
He and his wife, Pauline moved to Naples Florida were they spent the rest of their lives together. After Pauline passed away in 1997, Douglas moved in with his daughter and son in law back in Tennessee.
He was officially diagnosed with LBD in June 2005.
His brain is being donated to the Harvard Brain Tissue Resource Center for research into causes and cures of Neurological disorders.
For local friends and relatives, visitation will be held at his home in Cottontown on Saturday May 10 between the hours of 3PM and 6PM.
For Virtual and local friends, we request that you please sign our Visitation Log.
Laugh at Every Opportunity
Today we waited.
Three separate girlfriends came by today to visit and bring food. This along with my nephew who has stood vigil with us since Tuesday morning and brought food…We are tired but well fed. Daddy on the other hand has not had any water since Saturday AM. Nothing, no food, no water.
He is hot to the touch. I keep looking at his feet for the marbling the nurse spoke of, but I don’t see anything that resembles her description. I am expecting that he will quit generating so much heat and will cool off…perhaps that is Hollywood fantasy on my part…his skin feels hotter and hotter. He is perspiring, even with the minimal covers pulled back.
Daddy’s respiration has been the same for so long now; it is beginning to sound normal. Bless his heart; he is a fighter…stubborn to the very end. I just checked his BP…92/48. Pulse rate 94. Since he has no physical illness other tan LBD with some PD on the side, I wonder if his heart will carry him for a while. They always said he had the CV system of a 40 year old.
Now when he breathes his mouth is curled back around his gums, his breaths are short and shallow. He is hot all over. Perhaps expulsion of heat energy is one way of letting go Life’s Force. You cannot destroy energy, but you can dissipate it.
I told Summer, the Nurse’s Aide I thought we could skip his bath today. Perhaps that was a mistake. I went into sit beside him and with a bit of private time, I told him again that I loved him. That he was a good Father, and I had Hubbie and Nephew Trey here to take care of me. Daddy was old school about who takes care of whom…I took his hand from under the cover and went to kiss it….OMG! Crotch…no…HOT CROTCH…ShooooWeeee. Ummm. Nasty. I had to get up and go scrub my hands. It took two complete washings to get the smell off. I wasted no time soaking a rag in hand sanitizer and cleaning his hands. I left them on top of the cover this time.
There is no response to any stimulation. I thought perhaps I could get a hand squeeze, but no. Just limp.
Vanderbilt called several times today to coordinate the transfer to VU and the harvesting. I have a “To Do” list - a single spaced typed full page of things I have to do to make the donation happen. All of which cannot start until the time of death. As lucky as I have been by getting proper contacts by knowing someone who knew someone who knew someone, this process is not easy. Congress should figure out how to get donations done without so much effort, so much paper work and it should never cost the donor or the family of the donor a dime. I can see why people might shy away from donating organs with all this legal CYA crap. Fax this; sign that; get two witnesses; one set for Harvard, one set for Vanderbilt, I bet there will be another set for the transporters.
Unfortunately we have not heard from Hospice today, other than the Nurse’s Aide calling. We were hoping to hear about getting Daddy transported to the Hospice center so the harvesting coordination could be faster and easier. I guess they do not have an available bed, but I wish they would call and tell me one way or the other. Taking shifts around the clock so we can be sure to get him iced immediately is pretty tiring and stressful.
Otherwise, to my girlfriends that came over today....Thank you. Having someone to talk to about work, flowers, the weather, sex…anything other than death is so appreciated. My wonderful girlfriends were with me today in shifts from 9 AM to 9 PM. Thank you. Thank you. You have no idea how much I needed the company.
There’s a lesson here for me…when this is happening to someone else…I’ve never known what to do. Now I know. You go visit, you pick up the phone, you write. You take over food. You sit when its time to be quiet and you laugh at every opportunity in between.
5 comments:
old friend said...
...so tell me, Pauline, what kind of food did those girls bring? like Loveless Cafe biscuits, Center Point bar-b-que, I'd even take a mess of greens and pot lickker...I'm so hungry
Hubbie said...
Hubbie here. Pauline agreed to take something to help her sleep and she is in bed now. No dogs aloud. The hospice nurse called around noon. They are coming out this eveing to take Lewy Daddy to a facility in town. Our vigil will transfer to there. Thank you for keeping her in your thoughts. It really does help. Thank you.
kddove said...
will you let us know where?
Laine said...
I finally read through every post. Phew! I feel schizophrenic right about now, having gone through every emotion known to man in such a short amount of time. Your honesty and detail are heartbreaking and then side-splitting...a laugh-riot and then treacherous. It's great. But I do ask myself WHY is this happening to any of us. I like to think everything happens for reasons we just don't get right now (hindsight is always 20/20, is it not?), but, my god, I just don't know sometimes. Again, I hope you know that you have done so much for so many of us, and that we are with you every step and every blog entry. I wish you all peace, REST and complete happiness. One day I hope we can all understand this. Thank God for the moments that make us laugh hysterically, and the complete irrational nature of this disease...sometimes I just smile and shake my head at the things Lewy makes them say and do. Or I look up toward the sky, shaking my finger and accusing my Mom of laughing at this whole situation and because she escaped it in the nick of time! Oh, and I KNOW she's laughing alright! But I'll get her back for this in time! Ha! I went to see my own Lewy today and he was having a pretty good day. He wanted to go to Long John Silver's, so off we went. Some disasters, probably needless to say, but a good day nonetheless.
Dee said...
Thinking of you all and wishing a peaceful end for Mr Lewy.
Three separate girlfriends came by today to visit and bring food. This along with my nephew who has stood vigil with us since Tuesday morning and brought food…We are tired but well fed. Daddy on the other hand has not had any water since Saturday AM. Nothing, no food, no water.
He is hot to the touch. I keep looking at his feet for the marbling the nurse spoke of, but I don’t see anything that resembles her description. I am expecting that he will quit generating so much heat and will cool off…perhaps that is Hollywood fantasy on my part…his skin feels hotter and hotter. He is perspiring, even with the minimal covers pulled back.
Daddy’s respiration has been the same for so long now; it is beginning to sound normal. Bless his heart; he is a fighter…stubborn to the very end. I just checked his BP…92/48. Pulse rate 94. Since he has no physical illness other tan LBD with some PD on the side, I wonder if his heart will carry him for a while. They always said he had the CV system of a 40 year old.
Now when he breathes his mouth is curled back around his gums, his breaths are short and shallow. He is hot all over. Perhaps expulsion of heat energy is one way of letting go Life’s Force. You cannot destroy energy, but you can dissipate it.
I told Summer, the Nurse’s Aide I thought we could skip his bath today. Perhaps that was a mistake. I went into sit beside him and with a bit of private time, I told him again that I loved him. That he was a good Father, and I had Hubbie and Nephew Trey here to take care of me. Daddy was old school about who takes care of whom…I took his hand from under the cover and went to kiss it….OMG! Crotch…no…HOT CROTCH…ShooooWeeee. Ummm. Nasty. I had to get up and go scrub my hands. It took two complete washings to get the smell off. I wasted no time soaking a rag in hand sanitizer and cleaning his hands. I left them on top of the cover this time.
There is no response to any stimulation. I thought perhaps I could get a hand squeeze, but no. Just limp.
Vanderbilt called several times today to coordinate the transfer to VU and the harvesting. I have a “To Do” list - a single spaced typed full page of things I have to do to make the donation happen. All of which cannot start until the time of death. As lucky as I have been by getting proper contacts by knowing someone who knew someone who knew someone, this process is not easy. Congress should figure out how to get donations done without so much effort, so much paper work and it should never cost the donor or the family of the donor a dime. I can see why people might shy away from donating organs with all this legal CYA crap. Fax this; sign that; get two witnesses; one set for Harvard, one set for Vanderbilt, I bet there will be another set for the transporters.
Unfortunately we have not heard from Hospice today, other than the Nurse’s Aide calling. We were hoping to hear about getting Daddy transported to the Hospice center so the harvesting coordination could be faster and easier. I guess they do not have an available bed, but I wish they would call and tell me one way or the other. Taking shifts around the clock so we can be sure to get him iced immediately is pretty tiring and stressful.
Otherwise, to my girlfriends that came over today....Thank you. Having someone to talk to about work, flowers, the weather, sex…anything other than death is so appreciated. My wonderful girlfriends were with me today in shifts from 9 AM to 9 PM. Thank you. Thank you. You have no idea how much I needed the company.
There’s a lesson here for me…when this is happening to someone else…I’ve never known what to do. Now I know. You go visit, you pick up the phone, you write. You take over food. You sit when its time to be quiet and you laugh at every opportunity in between.
5 comments:
old friend said...
...so tell me, Pauline, what kind of food did those girls bring? like Loveless Cafe biscuits, Center Point bar-b-que, I'd even take a mess of greens and pot lickker...I'm so hungry
Hubbie said...
Hubbie here. Pauline agreed to take something to help her sleep and she is in bed now. No dogs aloud. The hospice nurse called around noon. They are coming out this eveing to take Lewy Daddy to a facility in town. Our vigil will transfer to there. Thank you for keeping her in your thoughts. It really does help. Thank you.
kddove said...
will you let us know where?
Laine said...
I finally read through every post. Phew! I feel schizophrenic right about now, having gone through every emotion known to man in such a short amount of time. Your honesty and detail are heartbreaking and then side-splitting...a laugh-riot and then treacherous. It's great. But I do ask myself WHY is this happening to any of us. I like to think everything happens for reasons we just don't get right now (hindsight is always 20/20, is it not?), but, my god, I just don't know sometimes. Again, I hope you know that you have done so much for so many of us, and that we are with you every step and every blog entry. I wish you all peace, REST and complete happiness. One day I hope we can all understand this. Thank God for the moments that make us laugh hysterically, and the complete irrational nature of this disease...sometimes I just smile and shake my head at the things Lewy makes them say and do. Or I look up toward the sky, shaking my finger and accusing my Mom of laughing at this whole situation and because she escaped it in the nick of time! Oh, and I KNOW she's laughing alright! But I'll get her back for this in time! Ha! I went to see my own Lewy today and he was having a pretty good day. He wanted to go to Long John Silver's, so off we went. Some disasters, probably needless to say, but a good day nonetheless.
Dee said...
Thinking of you all and wishing a peaceful end for Mr Lewy.
Counting Down
I’m sitting here at the foot of my Dad’s bed listening to his breathing. I’ve moved my laptop in to the living room where he is, because his breathing is no longer loud enough to hear in the next room. My nephew is asleep on the back porch after taking his watch from 10 PM to 3:30 AM. It suits me fine to get the early morning watch. I was so stressed and worn out yesterday; I went to bed as soon as Hubbie got home.
Bless my nephew…he cut the grass for me. Bless him again for being here. After Daddy passes, he will have only his maternal grandfather left. No parents, no siblings. Small families kinda suck at times like these. My nephew “Trey” is all the blood kin I have left on my dad’s side. On my mother’s side, there are dozens, but I would not know them if they pulled up in the driveway.
Daddy is breathing fairly regular now. Regular for a normal person. Regular for him is screaming loud snoring.
Oops…he just had one of those pauses…Funny how my breathing seems to want to pause with his. Then I get to focusing on his breathing, and my breathing pattern wants to change to match his. He is breathing faster than I am, about like I would be during an easy walk.
When Nurse Lindsey listened to Daddy’s breathing Monday morning, I saw her expression change. It was the change from “Hi! Here this is my friendly face to cheer you up” to her “Oh, geez, it’s time to tell her” face. Every muscle in her face dropped. It was incredibly subtle body language, I only had a profile view, but unmistakable. I knew that the last two of the final ten items had been confirmed.
Nurse Lindsey had brought along another nurse for today’s visit. I wonder if they do that for the pronouncement to the family day…or if it was just an routine dual visit, perhaps a new nurse to Hospice and was getting a first day tour…I know they talk in group meetings about each of their clients so they had to know from the Nurse’s Aide’s report from Monday that things were not good.
They were unable to get a BP reading off my electronic device. Nurse Lindsey got a 60/40 with the traditional method. The gurgling in his lungs no longer requires a stethoscope to hear. His skin is getting very pale. He no longer responds to me misting his open dried up mouth. I mentioned this to Lindsey, and she confirmed what I deduced from the last squirt, was that now, I must be careful doing that. It will go straight into his throat and just sort of linger there.
What ever position we’ve put him in since Saturday is exactly how he has remained until we rudely interrupt his peaceful sleep to tend to him. At this point, I’m not so sure I want the aide to clean him up, at least no more than absolutely necessary. It seemed to cause him so much anxiety and pain the last time….and for what?
We are waiting on a phone call from Hospice to tell us what to expect…a room at their center, or perhaps someone to help with the 24 hour vigil, or even a heart monitor would do. The Hospice people have been extremely concerned about the logistics of the actual death, pronouncement, and brain donation requirements. I cannot express how much I appreciate that they are fully involved in the donation and not just throwing it all back on us to deal with. They are trying to get Daddy a bed at one of their units in town. That way there would be someone 24/7 to pronounce him, and the transporters could have him on his way to Vanderbilt with in minutes, not hours, like it would be if he passes during the night out here in the woods. Either way, I think the brain will be OK, but fresher has got to be better, and with the forecast for the next few days, the less mileage to have to travel with the clock ticking the better.
The neighbor’s rooster just crowed. It is beginning to dawn outside, the summer birds are chirping away. Its going to be I think, one nice day before the storms.
3 comments:
kddove said...
i wonder if you can be a hospice volunteer with no medical experience... would you like for me to take a shift watching him?
old friend said...
I'm up, Pauline, keeping this vigil with you.
Stella said...
I am wondering what are your wishes. Do you want a bed in town, a heart monitor, or more help with watching him? I notice that my prayers are not for a particular thing but for what is best for you and Daddy. I know that will be the way it will work out. This net work of new found friends care about you.
Bless my nephew…he cut the grass for me. Bless him again for being here. After Daddy passes, he will have only his maternal grandfather left. No parents, no siblings. Small families kinda suck at times like these. My nephew “Trey” is all the blood kin I have left on my dad’s side. On my mother’s side, there are dozens, but I would not know them if they pulled up in the driveway.
Daddy is breathing fairly regular now. Regular for a normal person. Regular for him is screaming loud snoring.
Oops…he just had one of those pauses…Funny how my breathing seems to want to pause with his. Then I get to focusing on his breathing, and my breathing pattern wants to change to match his. He is breathing faster than I am, about like I would be during an easy walk.
When Nurse Lindsey listened to Daddy’s breathing Monday morning, I saw her expression change. It was the change from “Hi! Here this is my friendly face to cheer you up” to her “Oh, geez, it’s time to tell her” face. Every muscle in her face dropped. It was incredibly subtle body language, I only had a profile view, but unmistakable. I knew that the last two of the final ten items had been confirmed.
Nurse Lindsey had brought along another nurse for today’s visit. I wonder if they do that for the pronouncement to the family day…or if it was just an routine dual visit, perhaps a new nurse to Hospice and was getting a first day tour…I know they talk in group meetings about each of their clients so they had to know from the Nurse’s Aide’s report from Monday that things were not good.
They were unable to get a BP reading off my electronic device. Nurse Lindsey got a 60/40 with the traditional method. The gurgling in his lungs no longer requires a stethoscope to hear. His skin is getting very pale. He no longer responds to me misting his open dried up mouth. I mentioned this to Lindsey, and she confirmed what I deduced from the last squirt, was that now, I must be careful doing that. It will go straight into his throat and just sort of linger there.
What ever position we’ve put him in since Saturday is exactly how he has remained until we rudely interrupt his peaceful sleep to tend to him. At this point, I’m not so sure I want the aide to clean him up, at least no more than absolutely necessary. It seemed to cause him so much anxiety and pain the last time….and for what?
We are waiting on a phone call from Hospice to tell us what to expect…a room at their center, or perhaps someone to help with the 24 hour vigil, or even a heart monitor would do. The Hospice people have been extremely concerned about the logistics of the actual death, pronouncement, and brain donation requirements. I cannot express how much I appreciate that they are fully involved in the donation and not just throwing it all back on us to deal with. They are trying to get Daddy a bed at one of their units in town. That way there would be someone 24/7 to pronounce him, and the transporters could have him on his way to Vanderbilt with in minutes, not hours, like it would be if he passes during the night out here in the woods. Either way, I think the brain will be OK, but fresher has got to be better, and with the forecast for the next few days, the less mileage to have to travel with the clock ticking the better.
The neighbor’s rooster just crowed. It is beginning to dawn outside, the summer birds are chirping away. Its going to be I think, one nice day before the storms.
3 comments:
kddove said...
i wonder if you can be a hospice volunteer with no medical experience... would you like for me to take a shift watching him?
old friend said...
I'm up, Pauline, keeping this vigil with you.
Stella said...
I am wondering what are your wishes. Do you want a bed in town, a heart monitor, or more help with watching him? I notice that my prayers are not for a particular thing but for what is best for you and Daddy. I know that will be the way it will work out. This net work of new found friends care about you.
Counselor’s Call
Friday is the day that all of the Hospice people assigned to Daddy come out. Summer, the Nurse’s Tech was out and cleaned Daddy as she normally does, brought me a fresh box of gloves, got the message relayed that we needed more meds, and radioed the new nurse, Lindsey, about Lewy’s lack of out put into the catheter bag. He is urinating, it’s just slipping out along side the catheter tube into his diapers.
I had been so OK with the catheter, but now I have just plain old incontinence again. Again I am irrigating and now inserting suppositories to help him have a bowel movement. No one ever asked if I wanted him to have bowel movements…I was just fine without that.
As a friend pointed out, and I may have already posted it, but I had always said I could deal with Lewy as long as he could walk and knew who I am.
He can’t walk, and I doubt if he knows who I am more often than not. So here we are, changing wet linens, wiping butt, irrigating his bladder, and worst of all cleaning up the phlegm. I guess there is no need of thinking I can’t keep him here up until the end…that is until they say he is about to depart this world, then I think the Hospice center would be better, only because of the brain donation. We have several bags of ice in the freezer waiting…just in case.
I had a doctor’s appointment so I missed Nurse Lindsey. I had wanted to talk about the catheter and the lack of pee in it. But it is never a problem with Hospice, when Ruth, the grief counselor arrived she made the call to Lindsey and put me on the phone. Now I know if the diaper feels full; even after a couple of days…that is enough out put. I am not to worry, but should I decide to worry, I had her number.
No worries mate, no worries…
The counselor and I sat and talked for a while. She, like me, is a left wing liberal. It was obvious from her worn and tattered Kerry/ Edwards bumper sticker, along with “Give Peace a Chance” and a few other stickers about saving the planet and other such leftist slogans on her mini van. I knew I could be comfortable with her and not have to be careful of what I said. But all of us left wingers are not necessarily into “New Age” things like Healing Touch. I knew of the concept from a dear friend who years ago did the Healing Touch thing over my back (She never touched me) and I remember clearly that my incessant back pain went away. I never understood her explanation of it, but it has to do with getting a person’s lines of energy in order, or properly aligned. The Healer may neve touch you in the process, or they may gently touch you.
After talking for a while the grief counselor mentioned that she practiced the art of Healing Touch, and asked if she could try to “reach” Daddy who at this point in time was deep into a semi comatose state. Sure, why not? I found the process curious, but after my first hand experience with it, who am I to dispute the technique and what it accomplishes?
She asked me to light three candles. The room was sort of dark because of the thunderstorm going on outside, and the rain was loud enough to be clearly heard at Lewy’s bedside. The occasional flash of lighting and rumble of thunder only seemed to help set the mood.
Ruth walked over to Daddy and spoke to him in a very clear calm peaceful way. She called his name. He remained asleep. She began to do her work - the "Magnetic Unruffling"- by starting at Daddy’s head and with both hands she made a motion like she was brushing out hair from a center part. Long hair that went perpendicular to Daddy’s body then flipped up on the ends. After she made the “flip” at the end of the hair I was imagining, she would twiddle her fingers like she was spreading Fairy Dust or glitter about; flitting out some unseen very tiny things from her fingers. She repeated this stroking motion with both hands over and over. As she did them, she moved from the top of his head to about his knees.
She then went back to the top of Daddy’s head and made similar motions but it was more like pulling hair up into a ponytail straight up off the top of Daddy’s head. Again after finishing each stroke of the ponytail she would twiddle her fingers as if to flick something off of them.
After a bit of this Daddy and Lewy woke up. Daddy was in there, trying to talk. Lewy was in there trying to reach out and take Ruth’s hands. She took his hand and held it for several minutes, talking to Daddy about how long he had lived and how long he had fought, and that it was now time to turn loose and go be with Momma. Ruth called my Mommas name and asked Daddy if he could see her. He pointed over Ruth’s shoulder and said …over there”…
Ruth continued to hold his hand and talk to him. He mumbled a bit, but neither of us could understand what he was trying to say. She asked if he knew where Pauline was. He pointed toward the foot of the bed where I was sitting. She then asked if he had anything to say to me.
No response.
Ruth began again telling him it was OK to go, his work here was done. He should take Momma’s hand and go walk with her.
I just sat sobbing as I watched. She told him my mother and my brother were both waiting on him. It was time he should say good bye to me and go be with them.
She spoke to him a few times more and Lewy drifted back into sleep.
It was getting late and pretty dark and stormy. Ruth apologized for staying so late. Really, no apology is necessary. None at all. If nothing else she forced me to start dealing with him leaving me behind. And she made him smile. Really, no apology necessary.
As Ruth was making her way out, Lewy woke up and told Hubbie he had just seen the most beautiful woman he had ever seen in his life as he pointed to where he had seen Momma.
Whatever you did, thank you Ruth. I hope Momma is there waiting on him. Their fifty two years together was not nearly long enough.
3 comments:
kddove said...
Again, i apologize for comparing my doggie to your daddy... but that's what i was doing with lucy... telling her it was ok to go if she needed to... i told her that for a few weeks and a lot the last night. i told her thanks for everything and that i loved her more than anything in the universe, and if she needed to leave, i understood. and she finally let go...i guess it may have been silly to talk that much to a deaf dog.. but i know she understood.
Stella said...
How perfectly beautiful. It could make you feel as if you were also in the presence of Momma.
This from Stella, a staunch conservative.
old friend said...
another one of those WOW moments, Pauline! I am so thankful for the body that makes up Hospice.
(((((HUGS)))), tears, and laughs,
old friend
I had been so OK with the catheter, but now I have just plain old incontinence again. Again I am irrigating and now inserting suppositories to help him have a bowel movement. No one ever asked if I wanted him to have bowel movements…I was just fine without that.
As a friend pointed out, and I may have already posted it, but I had always said I could deal with Lewy as long as he could walk and knew who I am.
He can’t walk, and I doubt if he knows who I am more often than not. So here we are, changing wet linens, wiping butt, irrigating his bladder, and worst of all cleaning up the phlegm. I guess there is no need of thinking I can’t keep him here up until the end…that is until they say he is about to depart this world, then I think the Hospice center would be better, only because of the brain donation. We have several bags of ice in the freezer waiting…just in case.
I had a doctor’s appointment so I missed Nurse Lindsey. I had wanted to talk about the catheter and the lack of pee in it. But it is never a problem with Hospice, when Ruth, the grief counselor arrived she made the call to Lindsey and put me on the phone. Now I know if the diaper feels full; even after a couple of days…that is enough out put. I am not to worry, but should I decide to worry, I had her number.
No worries mate, no worries…
The counselor and I sat and talked for a while. She, like me, is a left wing liberal. It was obvious from her worn and tattered Kerry/ Edwards bumper sticker, along with “Give Peace a Chance” and a few other stickers about saving the planet and other such leftist slogans on her mini van. I knew I could be comfortable with her and not have to be careful of what I said. But all of us left wingers are not necessarily into “New Age” things like Healing Touch. I knew of the concept from a dear friend who years ago did the Healing Touch thing over my back (She never touched me) and I remember clearly that my incessant back pain went away. I never understood her explanation of it, but it has to do with getting a person’s lines of energy in order, or properly aligned. The Healer may neve touch you in the process, or they may gently touch you.
After talking for a while the grief counselor mentioned that she practiced the art of Healing Touch, and asked if she could try to “reach” Daddy who at this point in time was deep into a semi comatose state. Sure, why not? I found the process curious, but after my first hand experience with it, who am I to dispute the technique and what it accomplishes?
She asked me to light three candles. The room was sort of dark because of the thunderstorm going on outside, and the rain was loud enough to be clearly heard at Lewy’s bedside. The occasional flash of lighting and rumble of thunder only seemed to help set the mood.
Ruth walked over to Daddy and spoke to him in a very clear calm peaceful way. She called his name. He remained asleep. She began to do her work - the "Magnetic Unruffling"- by starting at Daddy’s head and with both hands she made a motion like she was brushing out hair from a center part. Long hair that went perpendicular to Daddy’s body then flipped up on the ends. After she made the “flip” at the end of the hair I was imagining, she would twiddle her fingers like she was spreading Fairy Dust or glitter about; flitting out some unseen very tiny things from her fingers. She repeated this stroking motion with both hands over and over. As she did them, she moved from the top of his head to about his knees.
She then went back to the top of Daddy’s head and made similar motions but it was more like pulling hair up into a ponytail straight up off the top of Daddy’s head. Again after finishing each stroke of the ponytail she would twiddle her fingers as if to flick something off of them.
After a bit of this Daddy and Lewy woke up. Daddy was in there, trying to talk. Lewy was in there trying to reach out and take Ruth’s hands. She took his hand and held it for several minutes, talking to Daddy about how long he had lived and how long he had fought, and that it was now time to turn loose and go be with Momma. Ruth called my Mommas name and asked Daddy if he could see her. He pointed over Ruth’s shoulder and said …over there”…
Ruth continued to hold his hand and talk to him. He mumbled a bit, but neither of us could understand what he was trying to say. She asked if he knew where Pauline was. He pointed toward the foot of the bed where I was sitting. She then asked if he had anything to say to me.
No response.
Ruth began again telling him it was OK to go, his work here was done. He should take Momma’s hand and go walk with her.
I just sat sobbing as I watched. She told him my mother and my brother were both waiting on him. It was time he should say good bye to me and go be with them.
She spoke to him a few times more and Lewy drifted back into sleep.
It was getting late and pretty dark and stormy. Ruth apologized for staying so late. Really, no apology is necessary. None at all. If nothing else she forced me to start dealing with him leaving me behind. And she made him smile. Really, no apology necessary.
As Ruth was making her way out, Lewy woke up and told Hubbie he had just seen the most beautiful woman he had ever seen in his life as he pointed to where he had seen Momma.
Whatever you did, thank you Ruth. I hope Momma is there waiting on him. Their fifty two years together was not nearly long enough.
3 comments:
kddove said...
Again, i apologize for comparing my doggie to your daddy... but that's what i was doing with lucy... telling her it was ok to go if she needed to... i told her that for a few weeks and a lot the last night. i told her thanks for everything and that i loved her more than anything in the universe, and if she needed to leave, i understood. and she finally let go...i guess it may have been silly to talk that much to a deaf dog.. but i know she understood.
Stella said...
How perfectly beautiful. It could make you feel as if you were also in the presence of Momma.
This from Stella, a staunch conservative.
old friend said...
another one of those WOW moments, Pauline! I am so thankful for the body that makes up Hospice.
(((((HUGS)))), tears, and laughs,
old friend
Talk to Me...Somebody...Please
Daddy slept all day except for enough time to feed him and give him his pills. He has always been a very loud snorer, but now that too is gone. His breathing is heavy and somewhat labored, but mostly he is pretty quiet.
Today was a wonderful day for me. I had an old friend and his daughter visit this morning and before they departed an even older friend arrived. She is living in Texas now, but hopefully soon she will be living back home here in Tennessee.
As soon as she left to go collect her husband, I left for a late appointment with Serita my hair stylist for a cut, color, moustache and uni-brow waxed, and over all yak it up session.
After that wonderful time I went to the new “outdoor mall” and found four blouses I felt the need to purchase; stopped for take out sushi and headed home.
Oh; it was good to have a day with friends. I needed the mental break. With Lewy in the sack ‘round the clock, there’s not much to do to comply with what his new nurse said; “Your job is to keep him comfortable and safe.” Unless the house catches fire, these tasks are pretty easy.
It’s the entrapment that is hard for me. When ever I get the opportunity to leave I feel like I’m sure our puppies do when we let them out to run. Just like Lyla, I run and run until I can’t run no more. Sitting here alone in the woods with Lewy can get pretty dull. I’m getting to where I want to nap in the day, rather than find something productive to fill my time.
When I finally came back in, we ate our sushi treats and sat down in front of the TV.
Lewy is still sleeping. He hasn’t moved in hours, maybe all day. I know I’m supposed to be turning him, but it hurts him so, and he is so peaceful when he is asleep. When he is awake, he rarely is Daddy, almost always Lewy, and always seems to be in pain. I don’t see the benefit in disturbing him so much. I really don’t think there is a lot of time left for developing sores.
Lewy is forgetting how to eat. Sometimes that mouth opens and other times Lewy sticks his tongue out, not playing, but just doing it wrong. Even the baster is becoming a bit more difficult, but still the best thing yet for giving him liquids. Everyday he takes in just a little bit less food and drinks. Even two sips of water get a negative reaction from him.
Friday is to be a busy day; Nurse’s aide, Nurse, Doctor’s appointment, Hospice councilor.
Another whole day of being around people who can actually talk.
How pleasant.
1 comments:
spouse said...
I was just informed that there is a pad that will move air within it,in constant rotation, so that people who do not move while sleeping can avoid bed sores. I will be receiving more info about it soon.I will pass the info in asap.
I am also learning the value of several kinds of therapy. Shopping therapy worked very well 'till all my closets, drawers and shelves became over crowded. (I have not learned throw away therapy yet.)
Conversation with friends is the best therapy, whether in person, on the phone, or e-mail. Garden therapy is great too. Tho my nail girl frowns at the soil around the edges, I'm elated when I notice that the radishes and arugula lettuce I planted last weekend are already up ! Knitting therapy was good last year, and I know I'll go back to it eventually "cause I'll need to use all that yarn I bought in shopping therapy. You have become a very important part of my therapy also. I'm sure I'm not alone there!!! And you are not alone either--- we are all in this with you and each other---
Di
Today was a wonderful day for me. I had an old friend and his daughter visit this morning and before they departed an even older friend arrived. She is living in Texas now, but hopefully soon she will be living back home here in Tennessee.
As soon as she left to go collect her husband, I left for a late appointment with Serita my hair stylist for a cut, color, moustache and uni-brow waxed, and over all yak it up session.
After that wonderful time I went to the new “outdoor mall” and found four blouses I felt the need to purchase; stopped for take out sushi and headed home.
Oh; it was good to have a day with friends. I needed the mental break. With Lewy in the sack ‘round the clock, there’s not much to do to comply with what his new nurse said; “Your job is to keep him comfortable and safe.” Unless the house catches fire, these tasks are pretty easy.
It’s the entrapment that is hard for me. When ever I get the opportunity to leave I feel like I’m sure our puppies do when we let them out to run. Just like Lyla, I run and run until I can’t run no more. Sitting here alone in the woods with Lewy can get pretty dull. I’m getting to where I want to nap in the day, rather than find something productive to fill my time.
When I finally came back in, we ate our sushi treats and sat down in front of the TV.
Lewy is still sleeping. He hasn’t moved in hours, maybe all day. I know I’m supposed to be turning him, but it hurts him so, and he is so peaceful when he is asleep. When he is awake, he rarely is Daddy, almost always Lewy, and always seems to be in pain. I don’t see the benefit in disturbing him so much. I really don’t think there is a lot of time left for developing sores.
Lewy is forgetting how to eat. Sometimes that mouth opens and other times Lewy sticks his tongue out, not playing, but just doing it wrong. Even the baster is becoming a bit more difficult, but still the best thing yet for giving him liquids. Everyday he takes in just a little bit less food and drinks. Even two sips of water get a negative reaction from him.
Friday is to be a busy day; Nurse’s aide, Nurse, Doctor’s appointment, Hospice councilor.
Another whole day of being around people who can actually talk.
How pleasant.
1 comments:
spouse said...
I was just informed that there is a pad that will move air within it,in constant rotation, so that people who do not move while sleeping can avoid bed sores. I will be receiving more info about it soon.I will pass the info in asap.
I am also learning the value of several kinds of therapy. Shopping therapy worked very well 'till all my closets, drawers and shelves became over crowded. (I have not learned throw away therapy yet.)
Conversation with friends is the best therapy, whether in person, on the phone, or e-mail. Garden therapy is great too. Tho my nail girl frowns at the soil around the edges, I'm elated when I notice that the radishes and arugula lettuce I planted last weekend are already up ! Knitting therapy was good last year, and I know I'll go back to it eventually "cause I'll need to use all that yarn I bought in shopping therapy. You have become a very important part of my therapy also. I'm sure I'm not alone there!!! And you are not alone either--- we are all in this with you and each other---
Di
Letters
I just wanted to thank you for the information on the blog
My poor mum is in the last days of her life, with LBD having suffered a few years
I am so so sad that I can doing nothing to help her, she no longer eats, has not spoken for three weeks and is lying in a hospital bed, very very sleepy, her finall intravenous fluids ran out last evening and the staff have stated there will be no more given, she looks so ill, her lips are so dry and her skin so pale, I fear the end is almost upon us and I wanted to educate my self for the final dread.
Thank you once more
best wishes
Mark
http://swimmingthechannel2008.blogspot.com
http://justgiving.com/markrobsonchannelswim
------
Thank you Mark. I needed the information you gave about the last days. It is so hard to get any definate answer about the timing because LBD is so poorly understood.
All- Please check out mark's web sites and if you can donate to Mark's fundraising page. J-A-C-K (Joining Against Cancer in Kids) is a newly formed charity, to benefit the fight against Neuroblastoma.
We want to find the cure Neuroblastoma. Lives are being lost now to this awful disease and the cure could be around the corner. We want to hire a scientist in this country (UK) to prevent kids having to travel to the U.S. for life saving treatment.
What a wonderful effort. Again, thank you Mark
Pauline
My poor mum is in the last days of her life, with LBD having suffered a few years
I am so so sad that I can doing nothing to help her, she no longer eats, has not spoken for three weeks and is lying in a hospital bed, very very sleepy, her finall intravenous fluids ran out last evening and the staff have stated there will be no more given, she looks so ill, her lips are so dry and her skin so pale, I fear the end is almost upon us and I wanted to educate my self for the final dread.
Thank you once more
best wishes
Mark
http://swimmingthechannel2008.blogspot.com
http://justgiving.com/markrobsonchannelswim
------
Thank you Mark. I needed the information you gave about the last days. It is so hard to get any definate answer about the timing because LBD is so poorly understood.
All- Please check out mark's web sites and if you can donate to Mark's fundraising page. J-A-C-K (Joining Against Cancer in Kids) is a newly formed charity, to benefit the fight against Neuroblastoma.
We want to find the cure Neuroblastoma. Lives are being lost now to this awful disease and the cure could be around the corner. We want to hire a scientist in this country (UK) to prevent kids having to travel to the U.S. for life saving treatment.
What a wonderful effort. Again, thank you Mark
Pauline
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