The Suffering of an Elderly Autistic Woman

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My mother-in-law is 88 years old, and I believe she is autistic. But having been born in 1922, I doubt anyone around her ever had any idea why she was (and still is, of course) so “different”.

A little over two months ago, my wife and I moved into her empty, dilapidating home and began readying it for bringing her back into it. Her husband had died one year previous, but they had both been in a nursing home even prior to that. Her husband had gone first, then she was placed there because she could neither manage her own affairs well and live by herself nor willingly accept outside help. She often spoke of having someone else live in with her, but none of the people she mentioned were willing to spend that much time anywhere near her. Like so many of us, she insists she knows what is best for her, then has meltdowns and intolerable tantrums when she does not get her way.

Two weeks ago, she had been back here at home for a month. A physical therapist had been coming in twice each week and she was becoming more mobile, and a nurse had been attending certain medical needs every few days. My wife and I had installed a secure cabinet for her medications, and all seemed to be going well until she decided she wanted her treadmill and we told her she no longer had one.

Two days later, and while still refusing to eat, she agree to go into a hospital in order to get out of this house. She said there were too many disturbing memories here and anyplace else would be better for her. One of her sisters and a sister-in-law tried to talk with her about widowhood and memories in deceased-husbands’ houses, but many of us know how useless the experience of an NT can seem.

In the hospital, my mother-in-law was (and presently still is) expected to participate in certain “senior care” group activities, but she is nocturnal and has been sleeping until noon for many years. My wife and I have tried to explain to the staff my mother-in-law’s autistic perspective and behavior, but she was (and possibly still is) nevertheless locked out of her room during the day so she might be forced to “cooperate” and participate ... and of course, she just continued having tantrums and refusing to eat or to even take any medication not needed for her chronic pain. My mother-in-law has a badly-twisted leg injured during her childhood and can now barely stand or walk.

I am looking around for a doctor or anyone else nearby who understands autism as well as elderly mothers-in-law, but for now ... well, all of us here still suffer.

That's terrible, I hope you can find someone to help her. Is she in a regular hospital, or one primarily for seniors?

This is illegal restraint - do not put up with this - the facility has no right to keep a resident from free access to their own living space. Seriously, report this to the state authorities. It is a violation of the law and considered cruelty. Anyone abusing an elderly person this way should do jail time. At the very least, the facility should be censured and fined for it. If you don't know what office to call, phone a different nursing facility and ask them the appropriate office and phone number.

I was married to someone who directed several eldercare facilities and she would have fired anyone who did such a thing on the spot.

The entire 13th floor of our general hospital is devoted to eldercare and they are forbidden to lie on their beds during the day. Mom was there for a while. Mom's been gone for years now. But it occurs to me - bring a witness.


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It is called "------ Medical Center", and it is a typical, local-and-relatively-small, regular hospital. However, my mother-in-law was in its "Senior Care" unit with fewer than a dozen other elderly folk ... and like many of us already know, finding a professional willing and able to notice and try to help anyone already beyond his or her 'teens is virtually impossible. But at least for now, the staff at the nursing home where she had been and where has been returned just this morning definitely interacts and deals with her much more appropriately.



I have already talked with an intake consultant at the "Advocacy Center for the Elderly and Disabled" in New Orleans, and I was told someone there would be calling me later on for an update even though we do not live within their specific area of state-contracted legal service. Part of me feels anger and wants to really make an issue of what was done to my mother-in-law, and the tears almost come even now. However, I do not see how any real change would ultimately take place anywhere around here ... and in the days ahead, I will be needing the services of the local medical fraternity, myself. So, and while I am definitely one to be calling things as they are and raising issues and demanding rightness, I am also a realist who knows things are as they are and are not going to change ... and since I have already mentioned my own self-assessment as an Aspie, I have already been categorically dismissed as a "nut".

I think I will at least call that hospital and ask for an appointment to talk with its "patient advocate", if it has one. To not approach someone there before "going public", so to speak, would be wrong ... but yes, and without having mentioned any names, I am hoping this thread might be noticed by someone with a little clout or whatever somewhere.

The woman there who told us what was being done is quite bold about reporting what is done there, so I seriously doubt there would be any denial. And as far as "forbidden to lie on their beds during the day" is concerned: That same woman had been specifically told it is painful for my mother-in-law to sit for extended periods of time (and she certainly cannot stand). Here around the house, she seldom remained out of bed and sitting for more than an hour or so at a time.

My wife has P.O.A. for her mother's affairs, and she wants to just forget that hospital and look for some other place to take her mother if/when she ever again needs one ... but my point here is to say that hospital would never talk to me as an "outsider" in this matter anyway. So, I will leave a more-detailed report with the Advocacy Center in New Orleans when they make their follow-up call, and then someone there can decide about whether or not to file some kind of inquiry, notice or whatever they might deem best.

For me, however, the most disturbing part of all of this is the likelihood of an elderly woman going to her grave without ever understanding herself or what had happened to her own life and without ever coming to terms with either.

May we somehow put an end to that kind of suffering for the rest of us.

I'm all with you on that matter, that would be so great.

Watching out for each other, as within altruism, is the only hope any of us really have ... but there are just so many things so many of us are hanging onto continually blocking the way ... and the first is the idea "Nobody understands."

On her own desire, my mother-in-law was returned to a nursing home a few days ago, but now she has an idea she might be better off (or feel better or do better or feel more secure or be closer to being at peace in this world) back here at home if she is in a different room than before.

What to do?! I can assure everyone that feeling would only last for a few days, if even that long.

I have in the past very quietly told my mother-in-law the two of us are quite alike and I understand her (simply because I have a fairly accurate understanding of my own self), but her own personal, spectrum analysis of her 88 years of life-experience yet keeps her clinging to a belief that is not possible ... and without being sure as to which drives the other, that leaves her yet insisting only she can possibly know (or maybe some day at least maybe come somewhat close to almost figuring out) what is best for her.

None of us really have to die that way.

You should probably try to find her someplace, even if it is for elderly people, that isn't an institutional environment like a nursing home. Most nursing homes would have anybody wanting to try a situation they previously loathed, after a few days/weeks, and you can't really tell from outside whether they're good or not. My grandmother (who may be autistic -- much of her family is -- and whose husband just died) is thinking of moving to a place that's for elderly people but isn't a nursing home.

I appreciate your thoughts there, and I wish I could follow that statement with something other than "but". However, there just is no geographical cure for the kinds of things we are dealing with here.

My mother-in-law is a woman who sequestered herself for many years, and now she finds herself unable to live that way any longer. She cannot live alone and remain alive and healthy, and she either cannot or will not -- she certainly does not -- readily accept help from anyone else. If either she or I had the money for doing so, I would immediately get to work trying to make this home *exactly* like it was before her husband died and she had to remain right where she is now, and that particular nursing home is one of the very best to be found anywhere, but that is just not possible.

Today she actually apologized to my wife for her most-recent tantrum and all the trouble, saying she "could not keep from doing it." But like we all know, there will be no memory of ever having said any such thing the next time it all happens all over again.

I do still watch for an opportunity to try to sit and talk with her a bit, but even a shave and a haircut would not be enough for me to possibly gain a bit of her trust that would last beyond any such exceptional, never-before-experienced moment.