Any 'Lewy Body Dementia' Caregivers?

[XNASA]

My dear mom has been suffering the effects of Alzheimers for the last 5 years or so.

Spoke with her doctor yesterday and the diagnosis has been changed to 'Lewy Body Dementia'.

Does anyone have any experience with this?

Thanks.

[mopinko]

1. sorry to hear that x

never heard of it. but you have my sympathies. i lost both my mom and mother in law a couple of years ago. it is always hard. there is no such thing as too old to need your folks. hang in there.

[XNASA]

2. Neither my brother nor I had heard of it , but.....

...in number of cases that are dementia related, it's second only to Alzheimer's Disease. It's actually like AD, only it affects voluntary muscle actions too.

My Dad does a great job of taking care of her, but he's getting worn down by it. He's hesitant to get help at this time, though we've recently gone over all options with him.

Thanks, mo.

[mopinko]

3. it's too much for one person, for sure.

a bit of unsolicited advice to your dad- unless he thinks he will be able to care for her at home until the end, she is better off getting settled in wherever she will end up sooner than later. the more of her faculties she has, the less the transition will unsettle and confuse her. i understand how he feels. you want to give them that comfort of home as long as you can. i know that sometimes money dictates this, and there is nothing much you can do about that. but other things being equal, in the end, it can be better for everyone concerned to just get it over with, and get her into a professional care setting.
hugs to you and yours x. it's one of the hardest things life has to dish out.

[Sgent]

4. I'm so sorry to hear that

Good luck to you, your mother, and your family.

For more information about LBD, go to the National Inst. of Health patient resourse page for this disease.

NIH Dementia w/Lewy Bodies Information Page

[blondeatlast]

5. I found this through Medline Plus:

http://familydoctor.org/585.xml

Seems to have a lot of really practical advice for caregivers.

Medline Plus has quality info and links only to the most qualified sites for info. I provide reference service in a library, and I highly recommend it as a starting point for information. The info they offer is top-notch and very easy to navigate and understand.

Here's the search I did on Medline Plus, lots of great links, it seems:
http://search.nlm.nih.gov/medlineplus/query?DISAMBIGUATION=true&FUNCTION=search&SERVER2=server2&SERVER1=server1&PARAMETER=lewy+body

Often hospitals will have access to medical databases for patients and caregivers. It might be worth it to call the social services center or the hospital library to see if they can offer you some guidance.

My thoughts go out to you and your mom. Anytime you need some support, feel free to post here.

Take care, friend. :hug:

[zanne]

6. Dear XNASA

You didn't mention this in your post, but are you her caregiver? Five years is a long time to watch your mother become less "like herself" every day. I've been caregiving for my mom for seven years now; she's bedridden, incontinent, can't speak or feed herself. After awhile, Alzheimer's does affect the muscles--my mom is starting to have trouble swallowing now, so I don't think it will be long.
I just want to tell you to hang in, whether you're personally caregiving or not; even if you only see her once a week, it can be psychologically draining. You sound as though you really love your mom ;that's great. Even when most of the mind is gone, a kiss and a hug still gets through. Make sure YOU get your kisses and hugs, too--you deserve it!

[XNASA]

7. Thanks for your post.

My Dad is the primary caregiver. But he doesn't follow instructions well, and he's quite stubbornly against modern methods of caregiving.

It's been a rough couple of weeks lately. She doesn't recognize anyone anymore.

Thanks again.