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Just need a listening ear ....
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Anon_32563 posted:
Tonight I'm exhausted! I've written several times before about the care of my mom who has Lewy Bodies Dementia. When I first started writing on this board, she was thought to have Alzheimer's. Mom is now entering the latter stages of LBD. I took her for her annual check up this past Tuesday with her specialist, and she came away with a fairly good report on all of her lab work, etc. The doctor was pleased. The doctor had her walk just a little, and she did a fair job considering her weakness, tremors, and parkisonian symptoms. However, in the following three days, she has been almost unable to walk at all. She is becoming disheartened and resorting to lying down for a couple of hours in the day. Yesterday, she went to bed at 3:30 p.m. and stayed in bed til 7:45 a.m. Tonight we had to use the wheel chair to get her back to her bedroom and to the bathroom. I'm not sure what my question is .... I'm just unsure of what to expect and what I should do or not do. Why is it that she seems to 'rally' when around the doctor or others, but on a normal basis is so weak? I have her exercise while sitting in her chair, and she is quite willing, but it doesn't help as soon as she tries to stand or walk. Back in July her doctor said she could go on Hospice if I wanted, but I have not because I thought it would be discouraging to mom. It's confusing to hear that she is eligible for Hospice and then to hear how well the doctors exam was on Tuesday. I'm sorry I'm rambling - it's just been a hard week.
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cjh1203 responded:
I'm really sorry you and your mom are having such a hard time.

I'm not sure why she has episodes of brief improvement around her doctor or others; maybe it's a bit of adrenalin? And I guess that, in any chronic illness, there are good days and bad.

If her doctor suggested hospice care, I hope you'll seriously consider it. A lot of people think of hospice care as being depressing and demoralizing, but it's just the opposite. I've known three people who used hospice toward the end of their lives, and it was a total godsend for those people and their families. It's a positive and uplifting experience for everyone involved.

The goal of hospice is to make sure the patient is as comfortable and content as possible, and to remove as much stress as they can from the caregivers and families. They oversee all aspects of the patient's care and coordinate all her needs with doctors, pharmacists, etc.

Please arrange a meeting with someone at your local hospice, and just talk to them. I think you'll come away feeling very positive about it. It's so heartbreaking to think about this being the last stage of your mom's life, I know, but hospice can make it more bearable for her and for you.

Please continue to let us know how she's doing.

Take care of yourself.

Carol
 
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Judith L London, PhD responded:
HI,

What a hard situation for you. Lewy body, like Parkinson's, can be confusing. Sometimes, just helping someone start a movement gets them going.

You don't have to use the term 'hospice' if you think it will upset her. Call it 'special care' while she's feeling this way.

I hope you have some help so that you can have some relief.

Judy


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