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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The lessons I’ve learned being a caregiver for my husband with Parkinson’s and dementia: All he wants to do is sleep. From the first day of taking carbidopa, he got on the couch and didn’t move. Huge mistake that has gigantic consequences.

They must keep moving. Had I only known this from the beginning. I have brought my husband back from the abyss three times already. The only thing that really works is a particular exercise machine. It’s a cycle machine that has the arms moving back and forth as they cycle.

Because of this daily exercise routine for 45 minutes, I’ve been able to lower the dosage of the carbidopa. He began looking like a drunk person after his meds, so I lowered the dosage and he’s coming back.

The leg cramps, restless leg if it happens at night it’s because the carbi wears off. I give him his last pill at 10:30 PM. Cramps are gone.

Singing for speech problems which in turn helps with swallowing. I turn on Pandora for an hour each day and I have to hear him singing.

My husband can fall without warning. But that seems to be lessening because of that exercise machine and less med dosage.

I’ve had him in three a/l’s for respite care and only one could give him his pills on time. They will promise you the moon to get you in to the place, but unless they have a dedicated med tech that shows up on time to actually give them the pills, it becomes a disaster for them quickly and then you’ll be hearing the saga of your person needs more care and for this amount of extra money, they can do blah blah.

Hallucinations: Nuplazid. 2 pills at bedtime. A godsend!

Constipation: dulcoease. One pill after breakfast with as much water as they can drink. My husband took miralax for years, no help. Everyone is different. But what I found out, the Parkinson pills are less effective if they are constipated.

No food 45 minutes before and after taking their Parkinson’s drugs. Not everyone gets affected by food, but I keep to it anyway because I don’t want to find out the consequences.

Because my husband now seems more alert, I’m trying to talk him out of being incontinent. It doesn’t happen all the time, but it’s a bad habit that they pick up easily. It takes my husband 3 or 4 tries to get out of a chair or bed, it’s easier for them to just go. But I refuse to accept this without at least talking about it.

Good luck to us.
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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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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.
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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.
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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.
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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.)
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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!
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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.
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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.
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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...
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