How to help 75yo mom with mobility & mental health issues from afar?
October 2, 2019 12:24 PM   Subscribe

About two months ago, my 75-year-old mother called 911 because she couldn’t walk. They brought her to the hospital where she stayed for 3 days (Medicare requirement), then she was admitted to a rehab facility. They provided physical therapy during her ~4-week stay and sent her home. The next day, she fell and couldn’t get up, and this hospital/rehab cycle repeated.

She’s back home as of this week and I’m wondering how to support her in the long term. But it’s complicated.

She lives in NJ, and I live in MA. My brother lives relatively close to her in NJ and has been the primary point person. (I’m making up for some of my guilt in not being physically there by doing research, like asking you all for help.) I was estranged from her for 10 years or so but am back in touch now.

My brother has talked with her doctors & nurses and has never been able to get a clear diagnosis on what’s going on -- other than the simple fact that she was having trouble walking and needed PT.

She has been having trouble keeping up with maintaining things in her house. When my brother went into her house after her first stay in the hospital, he said it was a huge mess and he had to spend a lot of time cleaning up.

When I was there last week, I helped her hang up her clothing that she had been leaving on the floor (because it’s easier to get to it that way, she says). Getting from room to room takes her an exceptionally long time, maybe 5+ minutes to get from her front door to her bedroom, which is not very far away.

Complicating all this, my mom has mental health issues for which she doesn’t receive care:

1) She is a hypochondriac. She is obsessed with her medical ailments. She has had a dizzying array of medical procedures over the years, including knee replacements and removal of nerves from her feet, and I have no idea how much of this was really necessary. She seems to shop around doctors until she’ll find one who will actually do the procedures she wants. I suspect some of this is contributing to her trouble walking, but who knows. She has also been very slow in her walking for at least 25 years. I’ve never known how much of it has been real versus attention-getting behavior. It seems more real now, but I really don’t know, especially without a firm diagnosis.

2) She alienates people. She complains about everything and everyone, often to their faces, and this unsurprisingly leads to people not wanting to help her. There is some paranoia mixed in there, with her thinking that people (including me and my brother) are out to get her or harm her in some way.

Where she lives: In an 55+ “active adult community”. It’s a townhouse style, private, gated community. She knows at least one of her neighbors, but she has alienated some of her neighbors in the past.

Financially: Her home is paid for and she has enough money to live. I don’t know anything more specific than that, other than she seems to be financially secure and will be for the foreseeable future.

She is very concerned about money. She is reluctant to pay for any help. (I think even a monthly housekeeper would be helpful, but…) She has expressed outrage at the $6-8K/month costs of nursing care that some of her rehab neighbors said they would have to pay.

Legally: She has mentioned she has a will, but that’s all I know. We probably need to either locate or set up her living will, power of attorney, etc.

What I’m worried about:

1) She is incapacitated and she can’t get help.
2) She needs care and runs out of money
3) Her mental health deteriorates

I think she would benefit from living in an “independent living” environment, where at least there are daily checks to make sure each person has been out of their home/apartment. We know someone in an Erickson Living community that I think would work well for my mom. There is staff, community activities, and some “forced” socialization at dinner provided in the community dining rooms.

This is a broad ranging question: What steps do you think we should take? And how do we search for trustworthy resources (with an emphasis on trustworthy)?
posted by scottso17 to Human Relations (10 answers total) 4 users marked this as a favorite
A few months ago, I posted a similar question. Briefly, my 89-year-old father was falling frequently, and the last time he fell, he could not get up, even with my mother's help. We (the family) ended up placing him in a nursing home. We had initially considered having an aide come in to provide care in the home, but that option just wasn't feasible, with his increasing weakness and declining cognitive ability. He's been in a nursing home for five months. We have not regretted the decision. The care in the nursing home is adequate (though not great). My father was somewhat agitated for the first month or two, and he kept asking to go home. But he has since calmed down and is basically resigned to living there. He's not happy, though he doesn't seem to be exactly miserable, either. My mother visits him every day, and other family members come a few times per week.

Given that your mother seems to fall and has other mobility issues, and given that she lives alone, I think you might consider the nursing home option. Nursing homes are very expensive, of course. In my father's case, he has three years of full coverage from long-term care insurance. After that, we'll have to apply for Medicaid coverage.

With regard to trustworthy resources: This is a tough one. There are on-line ratings of nursing homes, but you have to take them with a large grain of salt. Touring the facilities is helpful. There's also a local non-profit organization here that helps with these sorts of questions. I spoke with one person there, and she was very helpful with the financial aspects of Medicare / Medicaid. When my father was in the hospital, a couple of social workers were supposed to help us with the whole process of placing him in a nursing home, but they were worse than useless. They gave us a bunch of wrong information and were overall not helpful.
posted by alex1965 at 12:58 PM on October 2, 2019 [1 favorite]

not wanting to spend money goes hand in hand with, among other things, not wanting to be a burden. but your mom needs in home nursing visits at the least, because the falls will become an increasing thing whether or not she wants care.

i'm not saying there may be medical avenues, like getting a GP to follow up, or legal avenues, like getting the legal authority to manage your mom's care, but my first order of business would be to stabilize the situation such that there is someone present to handle and prevent falls and get a better idea of how your mom's daily routine is going.
posted by zippy at 1:03 PM on October 2, 2019

My mother is difficult, independent and has fall issues. We pushed and pushed and finally after one of the falls she agreed to one of those bracelets you wear that you can push a button to call EMS or a contact of your choosing.

If you can find a group for social workers on social media where she lives, you're likely to get fairly good feedback about where to consider taking her for placement.

I am the more distant child so I did most of the research on placement. seems fairly unbiased, but I get a ton of calls from them just like when you shop online for insurance, so be aware of that.

A lawyer familiar with elder issues is your best bet on financial and will stuff.
posted by crunchy potato at 1:25 PM on October 2, 2019 [2 favorites]

The social worker at the rehab facility (or the independent living center where she lives) should probably be your first stop for most everything you need. What sort of support would be best for her, who can provide it, and how to pay for it. They probably also know if she’s got a living will and the like b/c I’m sure they asked her about it at the hospital and/or rehab. They deal with people in your mom’s situation all the time. Use their expertise. It’s their job.

Do what you can to back up your brother as he functions as the primary responsible party. There’s a lot you can do by phone and whatever you can handle is something he doesn’t have to handle. I’ve been in his role and you have no idea what a relief it can be to feel your sister is your partner in all this.

On a personal note: Even when you get everything stabilized you will probably only have a short breather before some other crisis occurs. I hope I’m wrong, but it sounds like you’re at the beginning of a spiral of the sort I saw with each of my parents and it was so hard to take the broader (and calmer) view instead of riding the roller coaster up and down with everything that happened.
posted by DrGail at 1:47 PM on October 2, 2019 [4 favorites]

you have my sympathies, this is rough.

My mother is difficult, independent and has fall issues. We pushed and pushed and finally after one of the falls she agreed to one of those bracelets you wear that you can push a button to call EMS or a contact of your choosing.

If this sounds good but isnt doable, i believe apple watches have (some) of this functionality - it might be possible to convince your mom to wear one without making it explicitly about life-alter/fall issues? (then again if your 75 yo mom treated it the way mine treats her iPhone it wouldnt be any good bc it would constantly be int he other room nearly out of charge)
posted by Exceptional_Hubris at 1:53 PM on October 2, 2019 [1 favorite]

My mother had to take care of my father for many years, and the thing that pushed her to move him into a nursing home was a long, recurring string of fall events -- at least one a week, for more than two months -- where he would fall in a spot from which he could not be easily extricated, and she'd have to call the fire department for help. This is a very tough spot to be in, where your mother does not have someone on-site to assist or make these judgment calls for her.

The nice thing about the bracelet idea, noted above, is that you can present it as something to make her life easier rather than something taking away her independence: "hey, I know that you've had to call 911 when you've fallen, if we get you this device it'll let you call 911 even if you've fallen far from the phone." That might be something she's more likely to accept, and may open the door to other "make your life easier" conversations.
posted by davejay at 3:06 PM on October 2, 2019 [1 favorite]

I've gone through this with both my parents. It's hard. My father in particular tended to insist he was more capable than he was.

Does she have a walker? If not, get her one. Get one that has an attached chair/shelf: otherwise she'll try to hold something in one or both hands and scoot the walker along, and that's a recipe for a fall.

My Dad had a device for calling for help, and used it several times. It's worth it, but make sure she has a way to carry it that's comfortable for her so she actually does it. (My Dad just looped it on his walker.)

If she wants to stay in her house, elder-proof it. Clear the clutter, put railings on the walls, think about changes to the bathroom. Take care of loose carpet edges, raised door thresholds, and other things that can trip up a person with mobility issues. She won't like the changes, so maybe give her a choice between that and assisted living.

From your account, she's not safe at home. But before pushing for assisted living or a nursing home, see if the above issues can be tried. Someone to check in once a day would also be helpful.
posted by zompist at 3:06 PM on October 2, 2019 [2 favorites]

Does she have a rollator in the house? She might not use it. And especially might not use it if you are around. Get one and leave it there. It can't hurt.
posted by Gotanda at 4:43 PM on October 2, 2019

I'm an old man, who has fallen a few times. Matter of fact, when a one of our two cats gets underfoot, I'll fall rather than hurt them. So, I have various aches and pains from over the years. Do not get a "help, I've fallen and I can't get up" thingie. It's insulting to old people. If an Apple watch has an accelerometer, maybe it can be done to do the same, but in a dignified manner. Best solution imho, she sells her home and moves in with a family member. Realize it's tough on her too, it's end of life stuff.
posted by baegucb at 5:49 PM on October 2, 2019

This is very difficult. I am the local person helping my 89 year old aunt, who is sharp but fragile. I have a cousin who is 5 hours away who has her medical and financial Power of Attorney - she's a financial planner. They have been very close for many years, but haven't seen each other more than three times a year because my cousin has a very busy life and career in a city across the state.

It became apparent that her home is not safe for her, with three floors and steep stairs to the front door. There is one bathroom on the third floor. She does have grab bars in the bathroom and double railings on the steps, but she's often unsteady. I've been visiting a couple of times a week to do errands and help with tasks around the house, but lately I've felt more like an enabler than really helping her. It is absolutely obvious that she needs to move to assisted living, something on one floor where she need not cook. She has been incredibly resistant. I researched assisted living facilities in her neck of the woods and visited 8 of them, and when I whittled it down to the final 3 my cousin came to town and we took her to all 3 together. She found fault with all of them, and was less than warm to the staff showing her around. So until she has a fall - or worse - I guess she'll stay where she is.

I used a free (to me) service called "A place for mom" to help with finding suitable facilities, and have been pleasantly surprised with their help. I always speak to the same counselor, she knows the facilities inside out and often knows the director. I have had zero problem with frequent phone calls, but I've received occasional emails from facilities I've toured. I realize this person is not a social worker, but she is well-versed in the financial end of things. My aunt has always been extremely frugal and her reluctance to move may be related to the costs, which range from $3500 - $5000 a month, depending on the size of the unit. (Care for a cognitively-impaired person is substantially more expensive.) My cousin tells me she could live there for a decade, easily, on her savings and pensions and Social Security. To my aunt this is an outrageous amount, and staying home in her paid-for house is much more practical. Sigh.

My cousin researched her long-term-care insurance, and it will only pay if she's in an actual nursing home. My aunt is a military vet and as such is entitled to some in-home assistance, so she accepted someone to come into her home for 3 hours once a week. This woman changes her sheets while my aunt takes a shower so there is another person there "just in case", and does various household tasks. Anyone who is a vet is entitled to this, by the way, but you have to be in their system with at least one office visit per year.

The VA will also provide a transfer wheel chair, walker, or cane free of charge, and there are probably other things not mentioned when I went with her for her visit. They have additional services, including monthly income and housing for elderly or disable vets who have very low income, which don't apply to my aunt.
posted by citygirl at 6:03 PM on October 2, 2019 [2 favorites]

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