Need to find someone in NYC to help look after my Parkinsons-having dad.

November 12, 2012 2:27 PM

I'll try to stick to specifically relevant snowflake stuff here. So, my father is 78 and has Parkinson's, which is compounded by long-standing blood pressure issues that leaves him prone to falling unexpectedly (moreso than a typical Parkinsons patient). He lives in a big loft in the East Village (NYC) that he's lived in for forty years, and has no designs on leaving.

He has a partner, they've been "together" for about a decade, although they refer to each other more like travel companions than anything romantic. That said, she has been taking care of him throughout his deterioration, and was there for him while he recovered from a fall/injury earlier this year and had to be in inpatient rehab for several months (I visited regularly).

We've had a complicated relationship since I was a teenager, and I am currently living in Atlanta. He can be a stubborn prat most of the time, and I dont think our relationship will ever be particularly wonderful, but it is in my best interest at this point to aid in figuring out a solution. I'd like this not to be a thread about me being a bad son. I'm not.

He's had someone (a friend of a friend) living with him rent-free since July in exchange for looking after him (taking him on walks, making dinner, etc), but it seems now that he's starting to fall more often, and she's having trouble dealing with that and is planning to move out shortly. His partner is going over there today to try to convince her otherwise.

He has medicare, but has exhausted the 'nurse comes in and checks on him' benefits (i'm not sure enough about this situation as I have not been kept in the loop about the details, and have been find with that).

So, he needs someone that can stay with him and not get freaked out by his health and can help him get around and stuff. Ideally we would not have to hire a 24-hour nurse type person, because that is very expensive and he basically seems to function okay other than falling (which has dangers for someone his age entirely unrelated to his disease). However, we are nervous about him falling on the way to the bathroom at 3 in the morning and not having anyone around to get him to the hospital (which is not uncommon for Parkinsons patients)

I guess my question is, what are my options in NYC for this kind of thing. Are there resources for people looking for this kind of situation that are trustworthy? I'm certainly not going to post on craigslist for something like this.

posted by softlord to home & garden (10 answers total)

He has medicare, but has exhausted the 'nurse comes in and checks on him' benefit...

There's a different system for "nurse" and "home attendant." You need to look into home attendant services, as you can get one permanently assigned for a few hours a week, a few days a week (my grandmother's comes in for 4 hrs. a day, 3 days a week.) My grandfather, who had Parkinson's, had even more hours (something like 6 hrs a day, 7 days a week.) They're usually not handled through straight Medicaid/Medicare, so you'll need to find a reputable service company that provide home attendants. If you know any social workers, they would know about these services.
posted by griphus at 2:31 PM on November 12, 2012 [3 favorites]

Although this clearly won't solve the problem of the 3 AM thing as they're only around during daylight hours usually. 24-hr care is nearly impossible to get unless he is literally incapable of caring for himself. There may be a nighttime care system, though, I'm not sure how home attendant hours are doled out.
posted by griphus at 2:32 PM on November 12, 2012

Speaking as someone who recently lost a grandparent to Parkinson's: Whatever arrangement you find for him must account for the fact that this is going to get worse. He will fall more and more often, and eventually he will not be able to walk. Parkinson's moves slowly enough that you have time to get used to each new advancement, for it to become the status quo; it's easy to just deal with the new change and feel like the illness has been sorted, but then you have to upend everything again six months or a year later.
posted by Holy Zarquon's Singing Fish at 2:33 PM on November 12, 2012

Here is the NYC portal for home care services. You'll want to look into "Medicaid-Funded Home Care" but you may as well look at the other options as well.
posted by griphus at 2:34 PM on November 12, 2012

If you can get a daylight home attendant, the roommate may be able to handle staying which would perhaps solve the 3am issue.
posted by jacalata at 2:49 PM on November 12, 2012

Yes, you want a home health aide.
posted by elizardbits at 3:50 PM on November 12, 2012

Is there any chance that occupational therapy would help him learn to use a cane or walker and fall less?
posted by theora55 at 5:56 PM on November 12, 2012

You definitely want a home attendant rather than a nurse. But also try to set him up so his apartment is less of a hazard. In NY having 24 hour care paid by insurance is rare and mostly limited to people who are truly helpless without another person like people with quadriplegia or who require home ventilators. Medicaid will pay for home attendants but Medicare does not. Of course you can always hire private aides or come to some barter arrangement like the one your father has now.

Also, are there ways that your father's house could be made safer for him? Such as grab bars in the bath, a bath chair or bench, eliminating throw rugs, better lighting. Move any furniture in places that pose a hazard.

If he had a bedside commode or even one of those little urinal bottles to keep by the bedside, he wouldn't need to get up and go to the bathroom in the middle of the night and could empty it in the daytime, eliminating the need for someone to go with him.

Does he have LifeAlert or one of the other wearable alert systems?

Finally, if you're doing all this at a distance, you probably want a geriatric social worker to help navigate the system. If your father is not already seeing a geriatrician, he should think about it. A good geriatrician can help strategize about planning for present and future limitations as well as helping deal with issues like medication interactions, which are a huge issue for elderly people with multiple health problems. Geriatricians in general are also just much more apt to be really nice and caring physicians than a lot of doctors.
posted by The Elusive Architeuthis at 6:35 PM on November 12, 2012

Theora: He has those things (got them in rehab) and uses them but will occasionally get dizzy and collapse while using his walker.

Elusive: He does have a lifealert and place to pee in his bedroom. He is very stubborn and reluctant to give up any independence (which was true 10 years ago as well)

I will look into a geriatrician.
posted by softlord at 6:41 PM on November 12, 2012

I have been dealing with a similar situation with my mother. I got her a life alert button which she uses when she falls. Then we set up some people (I bet home health would have resources for you) to come pick her up when she has fallen. We basically pay $100 per trip to pick her up. This can be a 15-minute operation up to two hours if she has knocked things down when falling.

The situation is not ideal but it is working now. I also worked with her primary care doc to get her medications modified so that she doesn't fall as much and this has helped TREMENDOUSLY. Not really an option for you, sorry. Oh, and we had grab bars installed in her place in areas where she typically falls (right outside the bathroom door.) Keep in mind that as your father deteriorates, he will probably get to the point where he realizes he must change his living situation. Whatever supports you set up are temporary until he mentally gets to that point. Sorry for you. Find someone you can complain to when it gets tough (my poor brother has received many a lengthy email from me when I needed someone to dump on.)
posted by eleslie at 6:28 AM on November 13, 2012 [1 favorite]