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DKOBrown Asked May 2014

Why does my Mom do nothing that the Rehab facility and I have asked her to do in preparation for her returning home?

Here's the scenario:
Mini-stroke in March 2013.
Moved in with me May 2013. Would not exercise, read (brain stimuli), cooperate with home rehab, manage own hygiene, learn about her diabetes.
Several falls in November 2013. After rehab, she came home and would not eat, take meds properly, or even dress. Within 2 days she had another mini-stroke.
Back to rehab in a nursing facility in December 2013. Unable to walk or have solid food.
By March 2014, they had her eating regular food, walking / exercising for 2 hours a day. She was released from rehab and set to go home mid March. They wanted her to continue walking, engage in an occasional social activity, and show that she could manage most hygiene tasks for a week. Since that time, there has been NO effort to comply, but she can give no reason.

I am not exaggerating when I say she complains non-stop and is never pleasant. We are seeing a therapist and psychiatrist and (you guess it!) she will not do any of the things they suggest to improve her mood and mental health. She has now regressed physically, has trouble walking and her feet are numb and swollen because she does nothing but sit.

I can't figure this out. I am the only child, only living relative and her POA. She insists that she wants to be cared for by ME and only me and wants to come home. Okay ... so why wouldn't she do the simple things asked of her to prepare her for returning to family life? I am disabled, but if she were doing basic things without the endless complaining, I could manage her care.

Is it unreasonable to request that she show she can do basic daily hygiene, minimal exercise and some brain stimulation each day? We do not want her to come home and, once again, do NOTHING. Remember, last time that happened she had another TIA within two days.

She will not consider Assisted Living and now tells everyone she can't care for herself at all. Doesn't she realize that she can't come home if she can't do ANYTHING for herself? We can get some home health help, but that doesn't help my physical / chronic pain issues when she falls or decides to refuse food or to get out of bed.

Thanks for reading this. This site saves my sanity just knowing that I am not alone with crazy parent problems. (-:

DKOBrown May 2014
THANK YOU to those that responded!
Ba8alou - my mother has ALWAYS been this way. She has been evaluated and it was concluded that you cannot separate the mental illness, personality and dementia features. Either way, as you say, she is not in the driver's seat.

Shakingdust, thank you for understanding that TV watching, reading, calling someone are legit ways to stimulate the brain. My mom has had two mini strokes and there aren't a lot of ways for her to do brain exercise.

It's really sad that people do in fact have the right to quit and vegetate. It's sadder that the burden of this falls on loved ones, not the quitter. I'm so tired and have been pushed beyond where the moral rules are priority, but yes, then there are the legal ones. And I cannot quit on those.

It's really helpful to know that nurses recognize that the non-compliant patient is his own worst enemy. I think that it is in part to differences in our character strength and values.

Thanks again -

GardenArtist May 2014
I've seen this too, both in rehab facilities and at outpatient PT facilities when I had PT for various injuries. Some folks would enthusiastically participate but others griped and grumbled and acted as if they were being forced into getting help for themselves.

I have no professional, just a personal opinion, and I think it's in part based on the strength of one's character and outlook. That's not a suggestion of weakness; rather it's a reflection of how one views life and challenges.

The first time my father broke his hip, he shared a room with another man about his age. My father is ex-military (although not career military), and enthusiastically accepts limitations but reluctantly accepts limitations. He saw therapy as a challenge, a chance to compete with others and prove his mettle.

His roomnate on the other hand didn't do anything more than he had to for PT, spent time vegetating in bed watching tv, and was generally morose and unhappy.

Dad had family and friends visiting regularly (especially me); his roomnate had an occasional visitor. Perhaps that also made a difference. I never did learn whether or not he had family support.

But he seemed more apt to just accept his age related decline and not embrace the opportunities to help him heal. It was as if he'd decided the battle had already been lost. He also had been in the military.

I think also that the age related injuries can be so emotionally catastrophic that it seems overwhelming, and may cause some type of emotional paralysis which is difficult to overcome.

Just my humble opinion.

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Eyerishlass May 2014
As a nurse I have seen this over and over and I have no explanation for it. I also dealt with this with my dad. The PT and OT take our parents through their therapy regimen, all is well, and then our folks quit doing what they have to do to remain somewhat independent. And then! And then! And then they grow weaker and become miserable because they can't do anything anymore! This topic gets me so steamed. I had to practically lift my dad's leg up and down 10 times to get him to exercise. I finally just gave up. This is what I do for a living and I couldn't even get my own father to comply.

I visits patients in their homes and usually there's a family member there while I'm there and when I begin to inquire about the daily exercises, is my patient doing them, the patient always says yes but the family member shakes their head no. Always!

I have found that it's a waste of time and energy trying to convince someone to do something that's good for them. I've stopped trying to convince my patients to follow PT's suggestions and just write "non-compliant" in my chart. I will ask the patient why they don't do the exercises, do they have pain? Are they too weak? And I always get some excuse and then I move on.

Countrymouse May 2014
DKOB, why won't she do these very obvious, helpful things to help herself? Phew, now, do you want a list..?

But the main one is fatigue. Stroke, ageing, diabetes and the rest - all of these things make you plain tired. Dog tired, bone tired. At home she's got the option of telling you to "do one" and refusing to move. In rehab they won't have it. That doesn't mean she's happier in rehab, just healthier. To me, that's not a no-brain choice because, somewhere along the line, if we want to give up and rot, don't we have the right to give up and rot? As long, of course, as we're not expecting someone else to take the blame for it…

And there's the rub. That why I strongly agree with Ismiami. If your mother was peacefully vegetating I'd come down on the side of leaving her to it; but she isn't. She's complaining, she's making you feel guilty, and she's expecting you to take responsibility for her health at the same time as she refuses to help herself. Not just a moral responsibility either, but a legal one seeing as you have POA.

NOT FAIR.

If you are physically unable to provide full-on nursing care for her at home, that is your escape clause. Please use it - as Ismiami puts it so well, she won't be any worse off and you will hugely benefit.

lsmiami May 2014
An entries staff taking care of a non compliant patient is tough. An individual doing so is impossible. She needs ALF. she will be mad and miserable,
but she already is. At least she will be safe and you will be as well.
Good luck.

BarbBrooklyn May 2014
Has your mom always been like this, or is this new behavior? In other words, has she always been illogical, careless about her health and self centered? Has she been evaluated for vascular dementia, which can be caused by strokes, and/or other cognitive issues? You cannot bring home and care for someone who refuses/can't/won't cooperate in their care. You don't have to read very much on this site to see the disaster that will come of that. Sad as it is, she is no longer in the driver's seat, so to speak, about "considering Assisted Living". Unless you are willing to give up your health, peace of mind and santiy caring for her, that's the best alternative at this point. " I'm so sorry, Mom; there's just no way that, given my own health issues, I can care for you at home. There are good professional caregivers at these two facilities; let's go have lunch at them and see which one seems to suit you better". Work with the discharge folks at her rehab center at getting a good neuro workup to see if she has dementia; if that's the case, you need to make sure that any facility she goes to has the capability of working with that diagnosis. And believe me, you don't give up the caregiving; you become her advocate, her cheerleader and her shoulder.

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