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kaykaykay Asked December 2020

If assisted living maybe isn't the best choice for mom with Parkinson's, what next?

My mother (late 70s) has Parkinson's Disease. She lived by herself until this summer when a few falls and a broken wrist and back injury really took the life out of her.


After talking with a number of social workers, I decided assisted living made sense. I found a wonderful facility but unfortunately, within a month of moving in, mom fell at least five times. Two falls required ER visits although luckily nothing was broken. She is in a lot of back pain though. During the second ER visit, the case worker recommended rehab. So now we are paying for Assisted Living while my mom is in a separate rehab facility (BIG sigh). Rehab facility is recommending she stay until mid-Jan (about a month total.)


She was really only in the assisted living facility for four weeks. I really can't decide what to do. Options:
1. Go back to Assisted Living after rehab and hope for the best. Falls happened when she tries to transfer herself or do things for herself like shave her legs or make a cup of tea. Maybe rehab will strengthen her but I'm conscious that PD is debilitating. She is not going to get better and has really declined considerably in last two years My concern is that she is too great a fall risk for Assisted Living, although they have not officially told me that yet. I just don't want that phone call that says she's broken her hip or something. She has mild cognitive impairment and her short-term memory is not the greatest, so telling her to not go to the bathroom by herself is hard...in one ear, out the other.
2. Will she be safer at home with more 24/7 oversight? I could move her back into her house (luckily haven't done anything with it yet) and I could move in with her. But I moved in temporarily this summer and it was really tough. I'm lucky in that I have a remote job but I am probably on the phone 3 to 5 hours a day and it's probably a 50 to 60 hour a week job. (The more I work, the more money I make.) I hired some nice neighborhood women to help me out, but there were constant interruptions and my pay took a hit because I just couldn't manage my workload. Plus mom needs to go to the bathroom multiple times per night and is a fall risk, so I just wasn't sleeping. I could sell my home about an hour away and use what I would spend on my mortgage to pay for mom's care and hope that the relatives that are helping pay for assisted living will redirect the funds to home health care. She is not on Medicaid yet but we can also spend down her remaining money on home health care aides. I worry about this option for myself because I'd be moving to a retirement suburb where I know no one and frankly, I'm single and ready to mingle. (Although obviously in a pandemic, I'm not doing much mingling.)


I will probably circle back with all the social workers I spoke to previously, as well as call Florida's Department of the Aging again, but I thought I'd ask for advice here too this time around. Are there some other options I should consider? Resources I'm not familiar with? She has an elder care attorney but he "doesn't like to deal with hypotheticals" and hasn't been very helpful. He has told me to call him when she is really down to nothing in her bank account.


She apparently has the best insurance around -- Tricare -- if that means anything to anyone.


Thank you for any and all advice.

BeckyT Dec 2020
Papa fell 40 some times because he was at home, alone. Parkinson’s is a fall down disease, no matter where you live. I have no idea how he survived intact. He lived at home, alone, far longer than he should have because he was a stubborn old thing with a clear mind. He finally became too weak to walk safely and had to go to a nursing home.

If she is at the stage where she is falling several times a month, she should be in a facility where a lot of people can keep a lot of eyes on her. That is about the only way to prevent the majority of the falls. 24/7 care at home is far too expensive. The falls will only get more frequent and other nasty symptoms will start as well.

I would not move in with her and try to work. She will become your full time job, even with aids here and there. The struggles and interruptions and constant, all night and all day.

Papa went into a very nice 5 star rated facility, on Medicaid. He said the employees were wonderful to him.

Llamalover47 Dec 2020
Prayers sent for this most difficult of situations.

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MarieAR Dec 2020
Look into live-in care at her home. We interviewed a few different providers and went with visiting angels - no regrets. The cost is comparable to assisted living but you get one-on-one care.

Patryan20 Dec 2020
Hello ,

Sounds to me like affordable 24/7 care in her home will be a good option here as she will certainly benefit from one to one care as a single person/Patient
as opposed to a community environment where the aides all have several people/patients to care for each shift/day . This type of care from a reputable companion or skilled care agency should also be a cost effective solution as follows . Shift work is billed hourly and there are 24 hours in the day obviously , In many or most states and of course based on the level of care etc. the Live In or Aides or companions are compensated for a 12 hour work day in a 24 hour period and the other 12 hours are expected tp provide a reasonable stretch of uninterupted sleep , break , and meal times but at a rate that works out far less than the hourly rate for this reason and usually about half as much making this plan of care an atractive alternative . This type of service is very popular wher there are situations of cognitive decline where the seniors are in fair shape physically but require constant supervision and guidance for the most part .
Hope that helps Stay Healthy Now & always Pat Ryan -" A Gentle Touch " senior care LI,NY

Litlebit67 Dec 2020
My father insisted I put my Mom in a nursing home when she was first diagnosed with Dementia/Psychosis and I didn't listen.(they're divorced but still great friends) She spent nearly 2 yrs in AL and another 2 upstairs in their MC unit. It wasn't until the AL said they could no longer provide the care my Mom needed that I actually listened to my Dad. (I wish I would have sooner) The NH that Mom is in is SO MUCH BETTER than where she was! It took 3 months to get her qualified but they backdated it to cover her there. They were also the ones that figured out Mom had PD. My heart goes out to you. Wishing you and yours the best.

OkieGranny Dec 2020
This sounds similar to a situation someone I know is dealing with. His mom is in AL, but keeps wanting to buy a house and hire a full-time caregiver. She falls quite often and shouldn't be driving, but she still does. Every time she moves to a new place, she wants to move out and move somewhere else. She is going through her funds rapidly, and she won't move closer to either one of her sons, so it's hard for them to deal with her issues. I've never hired a full or part-time aide and I gather is it quite expensive. She needs to stay where she is or move closer to one of her sons and live in AL near them.
CharlieSue Dec 2020
She won't, I'll bet there's dementia there; elders who move around a lot and are never satisfied often do it because of dementia - except for RVers, of which I am one!
mstrbill Dec 2020
The next location for mom should be a skilled nursing facility. One option before that happens is to have her go back to assisted living and have her pay for a person to be with her one on one more frequently. Some if not all assisted living facilities allow and even require this in some cases. Then, when her funds dry up, she transitions to Medicaid and a SNF. I strongly advise against you moving in with her, for a variety of reasons. Although your heart may tell you to do that, trust me, it will eventually put both her and you in a worse position. The elder attorney has actually given good advice. She needs to spend down her assets (you seemed to say you and other relatives are paying for her care in some way. You shouldn't be doing that unless you absolutely can comfortably afford it and expect to be able to afford for your own care in the future), use her assets to possibly pay for more attention at AL, then you contact her attorney as he advised and she'll transition to a SNF where she will get more supervision. I wish you well.

againx100 Dec 2020
It seems like she is probably past the point where AL is appropriate. Or if she goes back to AL, you can hire an aide for X hours a day until it can be determined how much help she really needs.

I would not move her back to her house. You living there and having help and near constant interruptions and barely any sleep does not seem like a doable plan. You know how hard it was and it is not going to get any easier.
kaykaykay Dec 2020
I did look into hiring a private aide but I really think that is out-of-budget. I'm glad we have money for AL but private care on top of that will break the bank. That's when I start to think that we might as well just move her back home then so she has someone focused on her 1:1.

Agree that bringing her home is not a great plan. I keep hoping that maybe there's some option out there that will help us. LOL like my helpful relatives who think that I can find someone on the internet to live in the spare room and take care of my mother 24/7 in return for rent. (NOT a viable option obviously!!! I've learned that no one is good at math in my family.)
JoAnn29 Dec 2020
No matter where she is, she will fall even in LTC. I had a friend with Parkinsons. I remember we went to pick her up for a luncheon. She was waiting for us sitting in her chair on the landing of the stairs. Next thing she was standing up and waving her walker. I felt sure she was going to fall down those steps. She had fallen before and knew better.

Does your Mom have Dementia? Is she wheelchair bound or use a walker? Why is she falling? Not using her walker, trying to get out of her wheelchair? If she is cognitively with it, maybe some therapy would help her. They would come right to the AL. They could figure out her strengths and weaknesses. My Mom had neuropathy in her ankles. She wasn't suppose to pivot when she turned or she would fall.
kaykaykay Dec 2020
She is supposed to use a walker but likes to think she doesn't need it. We did have therapy coming to AL 2x a week. The PT thought she was doing great but unfortunately, she was still falling.
AlvaDeer Dec 2020
I think you will know more mid way through rehab what Mom can do and what might be the best option. She will either make wonderful progress or very little at all. You seem to know all the options, and if you can attend phone care conferences weekly some way you will know how things are progressing. No choice is ever going to be ideal. I sure do wish you good luck.
kaykaykay Dec 2020
This is a very wise point. Thank you. Rehab told me that we would be meeting this week so I will ask them.
BarbBrooklyn Dec 2020
It seems to ne that AL isn't working out and that you should let go of her apartment there.

If mom can't remember not to get up by herself or bend over when there is no assistance nearby, it seems to me that she substantially further down the road into dementia than "Mild Cognitive Impairment".

Have you looked at Memory Care units? Does mom's current rehab have either AL or MC that you could consider?

Why are relatives paying for mom's care?

It is almost impossible to keep folks with from dementia from falling. My mom fell with TWO aides in her room.

Best of luck!
kaykaykay Dec 2020
We've had some long talks about why she insists on going to the bathroom by herself and she just doesn't want to believe that she can't do it anymore. She doesn't want to feel helpless, but her body is really letting her down. She's about 90% with it mentally so Memory Care right now feels too soon. She has trouble remembering what happened when -- like did she go to the doctor's on Tuesday or Wednesday? Memory doctor said this is even harder for my mom because she was previously a "cognitive superstar" so she is totally seeing her mental decline, which is causing added anxiety.

Relatives paying because they are kind and want my mother to be treated well. We picked a great place.

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