Is assisted living the best option for someone with Parkinson's? That's what Dept of aging suggested after their evaluation.

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Husband still drives even though not recommended. Risks at home, but is their recommendation the best option? He's had falls lately that required time in a nursing facility but he's only required to use a walker.

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I can only speak from my experience with my dad. He had Parkinson's (the dx took literally years!!) and when he could no longer drive and do things around the house-- he could walk, without a walker but couldn't navigate stairs at all--my youngest brother added an apt on to his home. He built the apt in such a away that he could have put in a hoyer lift if that became necessary (it didn't).
Mother and dad moved in, mother was only in her mid-60's and was able to do most of the caregiving. Dad was a calm and gentle patient. Until the very last few months of his life, he was no problem. He didn't develop much dementia, and even at that he was still always sweet and gentle. I know that was a blessing as some people do not progress that way.

When dad got stiffer and less able to move, he had aides come to the house. I know this was not "fun" for this dignified man, but he was kept clean and as happy as possible.

At the right "time" he was having problems swallowing, and we knew the end was close. He chose when to start Hospice, he was in control of his decisions almost right to the last day of his life.

It did "take a village" but Mother had a LOT of help, and mostly what she needed was just to be able to get away a few times a week.

Dad wasn't a super sociable man, and would have hated AL. He didn't NEED it, as we were able to meet his growing needs as they came. I didn't have grandkids, so my time was more flexible, also I was 20 years younger and I felt a lot better. (I was the 2nd caregiver, after my brother).

Mother still lives in that apartment, she's 88 now and still kicking around. I can honestly say that if she gets as "needy" as daddy did, we will probably have to move her to AL. It's a whole different set of circumstances.

As far as your hubby driving--if his dr is suggesting AL, then hubs should NOT be driving. Period. Dad quit on his own, realizing he wasn't a safe driver.

This is a call only you can make. A LOT of Parkinson's patients (I know of 3 right now) live in their home with spouses/ families. As long as no one caregiver is burning out, and the patient is compliant...well, it's your call.

It's not a situation of "Here's the dx, take him to Assisted Living--" it's a decision that will come over time as you navigate this new dynamic. Some people with PD do in fact need to be cared for at a higher level.
My mother-in-law with Parkinson's is now in a facility because my father-in-law could not manage her care at home. She was getting urinary tract infections and could not get out of bed on her own. FIL's health problems were making it more difficult to care for her, and her incontinence problems and urinary tract infections kept causing her problems. In June, she had a supra pubic catheter put in. The infections have been reduced, but MIL could no longer make sure to take her own medications on schedule, manage her meals, clean herself and her home, and was a fall risk. She has varied between furniture surfing, a walker, and a wheelchair. To listen to MIL, she walks unaided and needs no assistance. Like Midkid said, if you have a big extended family that can share caregiving so no one burns out, it's do-able. FIL didn't want to pay caregivers. His own health with late stage COPD was at risk. My husband and I live over an hour away and both work full time hours. Brother-in-law and his wife live half an hour away, both work and have shared custody of teenagers with ex-husband. None of us were available for healthcare. So MIL is in Assisted Living on Medicaid. She is doing better physically with health for hygiene and medications (although she complains bitterly and insists she could be at home). After 2 hospital and then rehab stays in 6 months prior to AL, no she can't without 24/7 caregivers. And FIL won't pay for them. So...
Dad is currently in MC. He's in a wheelchair & the only thing he can do is feed himself. I say keep him at home as long as you can, but be realistic & make the change before you wear out.
Chloe, someone w/ or w/o Parkinson's can fall, anywhere...at home, and in a facility. We're more susceptible to falls as we age.

I think you have to evaluate what your home concerns are and whether or not they'll be met in facility care. And there's no guarantee of anything, wherever someone is.

Perhaps w/ PD, the issue is when and/or if the individual reaches a stage that he can't care for himself, and you can't care for him either.

It's also been my experience that companies, agencies, medical personnel (except the ones we've seen for years) are going to recommend a facility placement rather than keeping someone at home.

There may be a liability issue if they recommend someone stay at home and an injury occurs. If someone's in a facility, that liability shifts.
Thanks for all your responses. Let me add a few more details. I am in severe burnout. But that does not preclude my husband from staying home. The big issues are that he does not stick with safety routines from his PT, he sinks into a deep rut at home watching TV all day. I am not effective at motivating him, and he doesn't seem to want to motivate himself. My biggest fear surrounds attitude issues. I fear he will set his walker aside and fall again. He says he forgets his walker even though it's sitting within reach. Not judging here, but he is very inconsistent and I have no ability to control him. He weighs 225 and I weigh 115. If he fell and I was there I would probably try to grab him (natural reaction) and both of us fall. Then we are in dire straits. He has to keep working to counteract the inertia of Parkinson's, even though it is progressive. He just doesn't want to. He is my responsibility and so is everything else. He has sisters close by but they want noting too do with caregiving. I can't get away for obvious reasons. I don't know how to deal with burnout. Given these details do you maintain your suggestions or do they change them. Thank you all!
I get it, bc we were in a similar situation, except it was my dad. I think his judgement was off & he thought his walker was closer than it was or that he could actually manage a few steps without it. Also it was hard to be the caregiver, giving direction, to my dad --you know, role reversal. I can see how a spouse might respond similarly, trying to make his/her own decisions when they just shouldn't for safety. With that said, he might or might not get optimal motivation in a facility. I think Dad is in a very good one, but PT only lasted a few weeks. The staff there does what they can, but he can decide to participate or not. I hated placing Dad, & I still hate that he's there, but I'm very often reminded that there is an entire staff (younger too) doing what I was, & then only for an 8-hour shift at a time. If you're at severe burnout, it's time to at least look at other options. Have you tried adult day-care or bringing in care-givers for relief? We had just started adult day-care, & scheduling in-home relief just wasn't working well for me. Then Dad fell again, so here we are. It's been 7 months now, & it seems he's getting more comfortable there, & I visit every day. Bless you for all that you're going thru. I know how hard it is. (BTW Dad is in MC. He couldn't do enough for himself to be in AL.)
The burnout, the weight differential, attitude issues that perhaps might play out differently with the dynamic of some non-family caregivers helping him... I vote for AL.
Thank you! I think being around more people will be stimulating to him and a schedule I will good for him. He gave up after he retired, lost his purpose and it's been 8 years and he hasn't made any efforts, hence his health has deteriorated substantially. Other people draw him out and give him an outlet for his sense of humor, his art work that he just is not stimulated to do at home. Leaning toward AL to see if he does better.
Yes, try AL. It will be an adjustment but you can both do this. No shame, no guilt. It's the reality many of us face with caregiving.
Chloe, my mother-in-law complains about AL/NH for her Parkinson's and insists she could live at home without home health. She can't any more without help available 24/7 and rested. In AL/NH she is getting her meds on time and with the proper dosage. She has social interactions now (she was virtually homebound/shut-in to get a few hours of Medicare provided care per week). MIL gets proper diet and someone to help with incontinence issues. There has been a reduction in her issues with urinary tract infections - she's had one, AL caught early before another panicked ER trip. Father-in-law was seriously burnt out, had severe health problems of his own, and was also almost homebound to care for wife. Less than 2 hours of sleep per night with MIL's parkinson's bathroom and restless leg issues. He has been able to go back to being a husband and not a full time beat down caregiver. He visits her daily, and they've been able to go out for a few meals without her jeopardizing her home health status. FIL actually looks better, I was worried he would fall over and she'd still be there, missing husband and still ending up in NH.

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