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In the last 3 months I have noticed a change in my mom who was diagnosed with PDD; at first it was just dementia now she has symptoms of Parkinson's. She barely can move her legs or her hands without them being so stiff. She is bedridden and needs a bath but the only option is to do bed baths. It wasn't long ago I was able to get her up with a walker and walk her to the bathroom but now those days are gone. It is frustrating! I know this is the disease and not her refusal to work at getting up and get to a bathtub or shower.

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Yesterday there was a government inspector at the NH asking residents if they had any concerns (about their care of course). Mommie Dearest said she didn't know where the money was from the sale of her house - eighteen months ago and she was kept fully informed, but she wasn't quite so demented then - so I got hauled down there like a common criminal to provide paperwork of where the money went and how much she had ... she's good for $335,000 on top of her pension, happy now? I was so upset I ate nothing all day and needed to have a d**ned good cry. Raised by Mommie Dearest to put up, shut up and get out of her way I can't let go so I drank some but it didn't work, didn't even get a buzz.

Meeting with me and the director, once she was satisfied about money (for now) she went on for 2 hours about her old house, her furniture (my fault it was sold and I rushed to do so - it was 6 months before it sold - had to be renovated it was such a dump) complaints about the staff - she wants to sleep in and have breakfast served when she wakes up, there's no-one to talk to (60 other residents) And on and on it went. Me, me, me, I want, I want, I want, wah, wah, wah. Of course she's been a life long narcissist so that was no surprise.

She's had Parkinsons and many strokes over 17 years and dementia for 7 or 8 years. The mother from hell life long who never lifted a manicured finger to help her own parents when they were old and sick - too busy having a good time - I'd love to take her to task but I'm very calm today. Frankly her brain is 75% fried right now and there's no point.

As she's stayed in her room behind a closed door for 18 months and refused to look at activities or mingle and become used to me visiting all the time I'm not going for a while, feeling that I'm enabling her. When I reckon she's out of the apple juice and stuff I'll drop it at the office and ask them to take it to her, telling her I can't visit as I have the flu. She believes fibs.

Now she's convinced she can get in her wheelchair and get to the bathroom unaided, which she can't. It's only a matter of time. One more stroke and her brain will be totally fried, another bad fall may be the end for her and, frankly, good riddance.
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Parkinson's Disease with Dementia is one of the Lewy Body Dementias. It is very similar to Dementia with Lewy Bodies -- the main difference being which comes first, the dementia symptoms or the Parkinson's symptoms. Both involve protein deposits in the brain.

You will find a wealth of information at the Lewy Body Dementia Association website, lbda.org

My husband had Dementia with Lewy Bodies. As far as I know, there aren't a lot of good ways to predict how long any set of symptoms or apparent stage will last. Unlike Alzheimer's, the Lewy Body Dementias do not progress through recognizable stages. You may be able to distinguish mild/moderate/severe, but even that is fuzzy. My husband's symptoms were most severe his first year! My husband was bedbound for only a week or so at the end, and he died at home. My friend had to place her husband in a nursing home when he was no longer able to get out of bed or eat. He lived there for several years. "final stage" can vary a lot in length of time.

I would ask your mother's doctor if she eligible for hospice at this time. Doctors don't have crystal balls, either, but if he or she thinks it is appropriate, hospice care can be extremely helpful in providing services like the bed baths, keeping Mom pain free, and helping you cope with the emotional end of things.

If hospice does not seem appropriate at this time, it may be necessary to consider a care center placement for her, probably a skilled nursing facility. This may be simply too much for you to do on your own. This is NOT abandoning your mother -- it is ensuring the level of care that she needs.

Warm wishes to you, and to your mother.
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Ashlynne, being bedridden means the muscles lose all their strength, then painful spasms start, in fingers, then hands and legs. Appetite falls off and stops when the digestive system shuts down. Finally they can't even drink. You just make them comfortable and wait. Longjourney is right, a lot of times infection takes over and rapidly takes them down. Almost a blessing.
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My father has Parkinson's/dimentia.... Not to scare you but this is a very serious diagnosis. Please remember ..... Parkinson's disease is not a killer... It will be an infection that develops do to the lack of mobility that will be the culprit:(. My father being in stage 5 (final stage) has severe hallucinations at times and take syraquil (spelling?) to combat the hallucinations along with synamat(spelling?) which is the drug prescribed by my Dads neurologist for the Parkinson's. He has his good days and bad. I put my Dad in assisted living in July 2013. His stay there was short because he needed the extra care you describe with your mother. My father was moved to skilled nursing in November.i empathize with you. I am an only child making tough decisions for my mother as well. Not easy kiddo! Wish you well
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pstegman I've been researching the different stages of Parkinsons and dementia and can find no definitive answer as to how long she can last in her condition. When I've visited sometimes she's kinda (a bit) ok, others she's on death's doorstep..
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My mother has had Parkinsons and a history of stroke for 15 years, plus dementia for probably 7 or 8 years. She's in a nursing home now the past 18 months, unable to sit up or stand, and in that time has had another stroke, broken a hip and is in a wheelchair or in bed. She refuses to attend any NH activities or to try and make a friend or two, just stays in her room with the door closed pouting and dreaming up all kinds of insane stuff (she's an A1 narcissist).

I feel it is time you consider putting your mother into care. She will be well fed, cleaned and bathed and you can visit as often as you wish. The situation is only going to get worse until, due to the stress, you will have a stroke or heart attack yourself. Over 30% of caregivers die before those they care for due to stress related illness. There comes a time when you've done all you can and you must let the professionals take over.
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PDD can mean pervasive developmental disorder OR Parkinson's disease dementia. If she is bedridden, she is late stage or end stage Parkinson's and you really need to ask the MD if it is time for Hospice. He is the one who orders in home help for her, and you could use some now to relieve the burden.
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