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 Stages and Life Expectancy? 
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Stages and Life Expectancy?
This is such an indvidual disease. It is virtually impossible to plan into the future. The nurse is encouraging my husband to go into a nursing home. He is still doing somethings for himself. He showers and I dry him off, dress him, give his meds, help him out of bed some mornings. We can get homecare but at this time we have to take the hour or so they can give us and so that would upset the day more and I do for him myself. My husband had REM for a few years before any Parkinson's symptoms plus a few years before PD showed up he had a very bad reaction to anesthetic and to antipsycholtic drug given for the psychotic reaction to the anesthetic. When I read posts I am so grateful I live in Canada where homecare is covered by the provincial health insurance plan and nursing home is 1800. to 2400. per month depending on what sort of accomadation you request. Still, planning is hard as you never know when the next decline will come. My husband has balance problem but refuses any mobility device so I feel that eventually he will have a bad fall and then decline. Everyone has tried to get him to use a walker but without any success. Very frustrating.


Sun Feb 09, 2014 3:38 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Stages and Life Expectancy?
Hi; I looked for the book Lovig and Forgetting on Amazon.com and could not find it, however, I found it on Chapters.ca it was $14.40. Perhaps there is a way it could be purchased in the USA. Another book I have is Loving Someone Who Has Dementia by Pauline Boss, PhD it is a USA publiation so could be readily available. Anne


Sun Feb 09, 2014 3:51 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Stages and Life Expectancy?
Thanks for posting that info Anne!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Feb 09, 2014 7:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Anne - yes, I know how frustrating that is for someone who has mobility issues and won't use a cane or a walker. My dad was like that for a while and I used to get so frustrated with him. He was still living at home alone, and I explained to him over and over that he could not afford to fall and break something. One night he did his "swinging" to get out the back door to the recycle bin, lost his balance, landed half in and half out of the house. It was below freezing and he was totally unable to pick himself up off the ground, plus the door had swung against his butt so that he couldn't get up without having someone open the door for him. Luckily he had listened to me about keeping his cell phone handy, he called my sister who went to his house but she had to call the Rescue Squad because he was just dead weight and she couldn't lift him. It really scared him. He would have probably died of hypothermia that night had he not had his cell phone in his pocket. After that he was better, not great, but better about using a cane or his walker. It's a big chore! All the best, keep doing what you are doing to help, even if it seems like a struggle to get him to use an aid to walk. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Feb 09, 2014 9:32 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Stages and Life Expectancy?
Hi Lynn; Thanks for sharing. He used to go out and refuse to have anyone with him if I was away. My brother passed away and I had to fly across the country for the funeral. He refused to go anywhere or have someone stay here. I had no choice so I left him with his pills in a bubble pack for each dose and money for ordering meals in. He forgot his meds after the first day and on the evening of the second day he went out to a coffee shop, started hallucinating, left the shop and was wandering around down town because he could not find his way home. He finally did and came up to our unit but could not get the key into the door lock, fell and landed up against the neighbors door across the hall. Finally the neighbor heard him calling out and got him to his feet, called security to put him back in our condo. When I returned home the next night he was still terrified and told me some, but not all, that had happened. He had a MedicAlert bracelet on but apparently people just kept pushing him away or ignoring him when he approached them. He wasn't sure if the people were real or hallucinations. I gave him his pills and something to eat and put him in bed. The next morning he was right back to the idea that he couldlook after himslef. What I do notice is that he is not overly anxious to leave the condo without me so perhaps the final outcome of this episode will be a positive one. Anne


Mon Feb 10, 2014 2:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
Anne - another thing to be careful of is to assume that our LOs "learned" from a bad experience. They will remember temporarily, but most likely he will completely forget that he had wandered away, that being lost and falling was terrifying and therefore he won't do it again. It is much more likely that he will forget the whole thing, maybe tonight, maybe a month from now. Given the same circumstance again, you might expect the exact same thing to happen. It sounds like it's time for you to have to make that very painful role change from spouse to parent, and I'm sure that won't be easy or painless. Leaving him alone again doesn't sound like a good idea - between the meds issue (next time it could be he takes all of it, or none of it) and going out on his own and getting lost has happened to some of our LOs more than once.

A few years ago a friend whose husband had some form of dementia, put her husband to bed, locked the door and went out to play cards one evening. He "usually" went to sleep at 7 PM and awoke the next morning. Assuming this was going to happen this night, she went out. A few hours later she got a call from the police. Her husband had gotten up, unlocked the door, wandered out into the street and was standing in the middle of the street in his pjs, having no idea where he was or who he was or where he lived. Only when a person driving by recognized him did he get some help. The person phoned the police and told them who the man was, and they were able to track down the wife. Very scary for all, and he had no recollection of the scary event the next day…

Some people on the forum have gotten special alarms and locks for doors so that their LOs can't wander out in the middle of the night or when the other person's back is turned. That might be something to look into too. Good luck, it's so hard. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Feb 10, 2014 5:46 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 88
Location: Canada, Ontario
Post Re: Stages and Life Expectancy?
Thanks Lynn. My husband just seems leary of going out alone. I do know that he will go again if not watched, that one day or night he will try to wander out. Security at out condo has been notified and has a recent picture. They are pretty good and it would not be the first time they have returned someone to their unit in the middle of the night. There are few areas in the building one could go without being monitored. I have been thinking of getting an alarm for the door. A baby monitor was suggested so I could hear him unlock the door during the night. I will need to check into this soon. I have moved from wife to parent/nurse some time ago. It never is the way we would have chosen to spend our retirement years but we have to accept what the good Lord has given us and do it with grace. |Everyone has their personal cross to bear. Anne


Tue Feb 11, 2014 2:52 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Stages and Life Expectancy?
You are so right Anne - none of us expected to be the parent to a spouse or to a parent. Both are very difficult transitions to make and adjust to. It was my dad who had LBD, so I don't know if it would be the same for you, but at some point I just accepted that I had to make difficult decisions for him and go on to the next task at hand, and there were always plenty of those! LOL Despite his being very incapacitated, I tried to keep him involved to some extent, in decision-making. So, for example, when I felt that I needed to sell at least one of his vehicles, I didn't ask "if" it was ok, I asked "would you prefer to sell your truck to so and so or to the used car dealer?" That way he felt that he had input and that made him feel like he had some power over things in his life. He'd become very withdrawn socially and I thought he might be happier getting out of his room at the ALF, so I'd ask him if he wanted to walk with his walker, or go in the wheelchair, and if he wanted to stay inside and walk the hallways or go outside. I think he appreciated that he was getting to make some decisions, small as they were, it helped him for at least a moment not feel like he had no control over anything in his life anymore.

Take care of yourself. CGing is a difficult thing to do, but our LOs depend on us to take good care of them and do what's best. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Feb 11, 2014 6:49 pm
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Joined: Sat Apr 05, 2014 4:29 pm
Posts: 1
Post Re: Stages and Life Expectancy?
This is my first post and I regret it is on this difficult concern. I am also interested in this doc on the topic of my husband's future. I do not know what is needed to receive this info discussed . But, like everyone else, I am juggling to help my husband learn and deal with the future time we have together. Thanks.


Mon Apr 07, 2014 9:30 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Stages and Life Expectancy?
Mootsie, I do not want your question to go unanswered. It has been discussed quite extensively in back issues of this forum and it continues to pop up for caregivers wanting the answer. The sad truth that there cannot be a very good answer because there is not one, but many. The stages vary as you will come to know all patients are too different. Most illnesses follow a path where you can expect certain things. Not so if it is Lewy Body disease. The best you can do is find the medical treatment most available to you. For me I worked with our Family Doctor who sent me to a Geriatric Psychiatrist and between them they followed the guidelines from Specialists in their medical world which was all one could hope for as it gave him treatments for symptoms as they developed always trying to stay one step ahead. They kept abreast of LBD news and research. We kept in close contact with each other. I never had a Clinical diagnosis of LBD but, thankfully, they did not diagnose his condition as a false condition thereby giving him the "run of the mill" treatments which could have made his condition much worse.

I did have a Post-mortem brain diagnosis of LBD. For stages in my situation from beginning until his death at age 91 it spanned at least twenty years, for others here on this forum, you will read, the length is much shorter, depending of other physical conditions. Take care of his general health, if you can, and come back here often for study and questions. You will be surprised at how rapidly you will learn what is "best" for your individual situation, but you will be the one to find the answers and you will become his best source of information. Consider yourself his advocate, you know him best and his illness will be just his, not like anyone else but also very much like everyone else.

I know this sounds jumbled but that is our LBD world in which we live.

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Tue Apr 08, 2014 5:20 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 48
Location: Pennsylvania
Post Re: Stages and Life Expectancy?
Dorthea....I think your response to Mootsie was wonderful and right on target! Thank-you for taking the time to frame that perspective.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Tue Apr 08, 2014 7:30 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 96
Location: Hawaii
Post Re: Stages and Life Expectancy?
What might be helpful in looking at the stages of LBD and its progression is to look at the overall picture-- the end stage. Eventually, your LO will not be able to talk, eat and drink normally, walk, or have control over urinating or having bowel movements. When I first read this, I couldn't picture this-- so final, complete breakdown of all systems. My mother was diagnosed late, and we did not trouble her with this bleak picture, funeral arrangements, etc. She was too far gone (and had co-morbid psychiatric conditions) to fully understand the details, although she understood and witnessed her own downward spiral.

I thought since my mother was still talking (true, not as much as before and more talk focusing on her hallucinations, rather than what was really happening around her), drinking only mildly thickened liquids (nectar thick), and still eating, although now it was pureed foods, that she had more time left -- perhaps a year. A fall had left her bed-bound. She had urinary and fecal incontinence. But she was getting recurrent UTIs, recurrent dehydration, more trouble swallowing. Then, abruptly, she developed aspiration pneumonia, while in a SNF for "general P.T." and died shortly thereafter.

Contrast that to a friend of mine whose mother had LBD. Her mother could no longer talk, ate only through a feeding tube, was bedbound and had been this way for 3 years! She was at home, cared for by family and outside CGs. When the money for this ran out, her mother ended up in a nursing home, where she died of aspiration pneumonia in a little over a week. My friend said that her mother had wanted to live at "all costs" and was "happy".

My mother, on the other hand, became more miserable as her symptoms progressed. During her lucid moments, she'd lament that she couldn't do any of the things she loved anymore -- read, write, talk politics! She didn't want to live at "all costs". She wouldn't have wanted a feeding tube.
After the aspiration pneumonia from which she did not recover, she could no longer safely eat by mouth. It was recommended that she go into hospice, which she did and died peacefully surrounded by her family 5 days later.

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Fri Apr 11, 2014 6:54 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 770
Location: LA
Post Re: Stages and Life Expectancy?
Quote:
Eventually, your LO will not be able to talk, eat and drink normally, walk, or have control over urinating or having bowel movements.


The previous entry explaining this quote and giving the contrast of two patients is very helpful in trying to understand why actual stages cannot be written. We all know it is a downward spiral and the best the caregivers can do is to find the most knowledgeable medical team possible and work to keep what ever your loved one retains. Stay with this forum and continue to learn and report how it is for you and your loved one. Others will learn from you.

Go way back on all the topics and study the Q&As Dorthea

_________________
"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Fri Apr 11, 2014 1:03 pm
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