Not sure where we are...at this point in the care giving

thmscheng

Hello,

My Uncle (87 years old, diagnosed 2 years ago with lewy body dementia ) who I’m heavily involved in the caregiving has become weaker, although he can sort of walk slow (wish he would use the walker we got him). Last few months he started sleeping a lot during the day time. Today I asked him if he just woke up from his nap and he said he hasn’t been sleeping at all. His appetite had been good up to this point, but now he’s not eating as much and concerns me. We have caregivers come to take him for walks when he feels like it, they do some housework and make meals 3 times a week. We went through a period where he refused to wear his adult diapers and the result was not good, but we are ok for now. 

I just don’t know if he needs more care for someone to really look after him and makes sure he exercises or eats, of I should contact his doctor and see what they think? of if this is just the natural progression of dementia ?

He’s still able to converse in conversations although sometimes not making sense, moody on occasions, but can still dress himself and bath himself with some assistance. 

thanks,

Thomas

M1

Hi Thomas, sounds like the natural course of dementia to me. He's pretty advanced, have you considered a hospice evaluation? Guidelines are more liberal for dementia patients and I bet he'd qualify. More help, and valuable guidance for late stage disease. Good luck-btw you don't need a doctor's order for hospice, you can call and request assessment.

thmscheng

we looked at some places, but the family prefers to have care at home for as long as possible. He’s still able to do the basics himself and converse with us. Part of me thinks he may have a physical ailment that needs attention and some family members just attribute it to part of his dementia. That’s why I’m confused.

aod326

In most cases, hospice care is provided at home, whether that be a "regular" home, or a facility that is their current home. So it's definitely worth getting an assessment.

In answer to your questions, I'd answer yes and yes. Yes, it's natural progression, and yes he may need more care. Care could be in the form of an aide a few hours a day, a couple of days a week, all the way up to a live-in carer. In terms of the sleeping, he may still be sleeping plenty, but forgetting - the same happens with some PWDs with eating too.

aod326

Oh, one more thing, doctors aren't usually much help in this situation - the care of PWDs is not their expertise.  That is not meant as any disrespect to the talented doctors on these boards! These boards, plus potentially hospice, will help.