My husband's grandmother is uncooperative with transfers and therapy. Any advice?


My husband's grandmother was completely independent prior to her stroke in August. Since then, she has become completely dependent on 24 hour care, and we moved in. I quit my job to care for her, and my husband helps at nights.

At first, she was cooperating very well with therapy. So well that they said she would most likely no longer need her wheel chair any longer and just use a walker.

Then as time went on, she started trying less and less. She doesn't want to walk anymore, she doesn't even want to take steps to transfer from her wheelchair (using a walker) to her comfy chair, or from the wheel chair to her bed, or from the wheelchair to the toilet (etc.)

Occupational therapy has said that she was/is completely capable of dressing her top half, brushing her teeth, and brushing her hair. She refuses to do anything except help get her hands in the sleeves. Her hair won't be brushed unless I do it.

Unfortunately, she knows that, no matter what, I won't let her fall. She knows I am capable of practically dead lifting her from surface to surface. If I make her help she has a tantrum and screams about it. She's even worse with my husband. When she transfers, she only turns half way, and then just lets herself fall, knowing that I'll still be able to get her to the chair and pull her straight.

I know she is capable of doing it herself, because there are some times she wants to get into the comfortable chair, but refuses to stand up herself and pivot to it, I tell her "If you can't do it, then we'll just have to wait until my husband gets home for you to sit in it."

And sure enough, she stands straight up, soldiers around to it with no assistance, and plops down as if she never had a stroke.

Unfortunately, she needs her diaper changed. She can't be left in a wheel chair or she'll get sores. She knows I won't neglect her or let her sit in a dirty diaper all day so, in the end, I'm deadlifting her around to where she needs to go. Its even worse if she doesn't want to do something, even if she has excrement running down her leg and she doesn't want to go get changed, its up to me to completely lift her around myself. Or god forbid on doctor days...she hates going to the doctor so my husband and I have to deadlift her into the car with no help. She's 170lbs, and gaining weight. (She didn't want to prepare her meals before, so he hadn't been eating, now she's gaining a lot since I've been cooking.)

I am 29, and my husband is 30, and both of our backs are shot. Since October, when she moved in, we've both gotten muscle relaxers from our doctors twice each. Waking up in the morning with excruciating back pain is the new normal for me, well, for both of us really.

Its so frustrating because I know she is capable. She has PT and OT that come to help, and sometimes she does great, and sometimes she doesn't want to do it and doesn't cooperate. Just recently a friend divulged to us that prior to the stroke she had been saying that she didn't know why someone wasn't living with her and taking care of her. She wanted someone to wait on her hand and foot prior to this all happening, and now I'm worried she's just taking advantage of the situation and not helping.

Furthermore, I'm worried that since she has had such a past of being stubborn, I have no way of knowing whether or not she is just being stubborn, or has truly lost the capability to maneuver. Where do I draw the line between tough love and being a jerk?

We really don't want to put her in a home. It was a huge fear of hers her whole life that she would just be dumped in a home, and we're doing our best to make sure she can live out the rest of her life in her own home. But it's really taking a toll on our health.

Any advice would be great! Thank you in advance.

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Good job Serenity. You have all done your best to give his grandmother what she wanted. She just isn't strong enough. Hopefully the therapy and a little more time will help you make the best decision for all of you. Thanks for the update.
Helpful Answer (1)

You also need to get a full cognitive workup, either while in rehab or before. As someone mentioned, dementia often follows a stroke; her understanding of instructions and consequences may be damaged. Good luck!
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Look: Rehab is the best place to start. To learn from P.T AND O.T.
By law, here in CA, they have to be eligible and participate three hours per day. They can't refuse to go to the gym and do transfers, pivot, chair to bed, chair to shower bench, and they even have training in the kitchen. You and husband can and will be able to get the best help there. Nutrition, diet, videos on several topic applicable to her. Evaluation on speech and cognitive competence. The works. Your M.D. needs to make a referral. You and hubby need HELP!, immediately. The personnel at the rehab will give you an honest appraisal of grand ma's long term care, short immediate assistance and long haul predictions. They're the professionals, and usually patients behave their best there. If grandma is able to be selective and is turning the act on and off......................and you 2 with injured backs...................take some lessons on PT AND OT. observe the sessions. It will be a lifesaver.
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Just an update. We had another incident in the barhroom where she didnt want to do a full transfer and barely got to the chair. I panicked, tried to get her up better, and pulled a muscle in my abdomen. I asked her to help and she yelled no, so i told her i was going to call the ambulance because i hurt myself and cant lift her. When i went to get the phone she pushed herself back into her chair.

After that incident my husband and his family all agreed shes going back into the nursing home for more therapy. They told her she gets one more chance to come back home after this stint, and if she refuses to help shes going to another facility permanently.

Im worried its still not getting through to her. Even after the lecture and me telling her the doctor told me not to lift her anymore she threw a few tempet tantrums about me not taking her to her chair and giving her dinner in bed (after her grandsons put her in bed.)

I hate to throw in the towel. But either a)she is capable and refuses to help, or b) she is not capable. Both paths lead to her, me, or both getting hurt and its not responsible.
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I'm concerned more for your spirit, your health and your back than for grandma.
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I learned the hard way that you can't lift and carry around a fully-grown adult person for very long. I also learned to never assume that an elderly person is "jaking it" aka deliberately not cooperating. In my mother's case, it was being assumed that she "wasn't trying" because she wasn't complaining about pain or anything, but as it turned out she had a fractured spine.
Helpful Answer (2)

I would be concerned that much of your grandmother's behavior is due to brain damage with her strokes. Maybe her brain tells her body to move a certain way, but it doesn't always cooperate. I'd hesitate to assign her behavior as intentional under the circumstances. I would consult with a neurologist to investigate further. I would be hesitate to label her until I knew more. However, regardless of the cause, it's not likely you will convince her to change. She needs constant care. I'd explore what outside resources that may be available and locate suitable placement. There are good places. Many underestimate the amount of care for a person who has limited mobility and is double incontinent.
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Serenity, if her attitude is that folks "dump" old people in facilities, you need to announce to yourself and to her that that is not what nh care is about. It's about professional caregiving. It's caring, but it is informed by the elder's needs, not how much they can guilt a family member into doing. I think that it's a shift in everyone's attitude that is worth working on.

Many years ago, my grandma broke her hip. She had surgery and announced to all and sundry "I'm an invalid, "my daughter will take care of me". My mom "the daughter" had three kids, including a 2 year old. She told my gm in no uncertain terms that she was going to rehab ( a new concept...this was 1966, a year after Medicare started) to learn to walk again, that she couldn't possibly care for her if she was bedridden.

My grandmother was furious and never really forgave my mom. She'd cry everytime mom would visit in rehab and say "i can't believe you would do this to me". But she walked again, and was able to return to living on her own again for another few can respect one's elders and still get what's best for them. It doesn't have to be mean or insulting. Just calm and authoratative.
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Thank you everyone for your answers. Reading them has helped so much. I have been feeling really down on myself and guilty for feeling like this is such a burden and having a bad attitude about it. A lot of people around me (family and therapists) keep telling me I need to be harder/stricter with her, but that is a very difficult thing for me to enact. I have been lately, and feeling terribly guilty for it. Hearing it from you guys gives me comfort that I am on the correct path.

Firstly, I must apologize for the 'dumping in a home' comment. It was insensitive, and I don't think ill of people who put their loved ones in homes. I was typing from her point of view, and I should have been more careful about how I brought it up.

Just a few facts to clarify and give a clearer picture:

-She is my grandmother-in-law. It might not mean much to some, but the dynamics do feel very awkward for me when it comes to being strict with her. Whether its temperament or upbringing, I feel a greater need to act respectfully at all times with her, even if she is being witchy to me. (Which is my failing completely.) My husband is even harder on her than I am.

-When I say I fear I won't be able to know if she is really having a hard time, I mean future-wise. I know that, eventually, she will regress and things will become harder. She has a lot of health problems (diabetes, chronic heart failure, stroke, high blood pressure, A-fib.) I fear in the future she may genuinely may not be able to stand (heaven forbid it be from something like another stroke) and I will get stuck on thinking she is being stubborn and miss something. This is the only thing giving me pause to just mentally strong-arming her into doing the work she needs to do.

-She is actually on anti-depressants now.

I am completely well aware I am being manipulated, and I feel like that is a lot of where the resentment is coming from. If she genuinely weren't able to help me and I was still hurting, that would feel better to me. I choose to put my body through the punishment to help her. But instead she is being selfish and possibly putting my husband and I though harm for her comfort. I'm just trying to find the line between being a bitch and tough love.

The cooking comment (from 97yroldmom) is really spot on and touches a sore spot. Her diet was garbage before she "came to me" for care. All carbs all the time, and she is very picky. I have succeeded in introducing her to a few dishes, but otherwise she is very hard to please when it comes to food. If its green, she won't eat it, lol. I am scared of being too strict with her because I have to give insulin, and I don't want to give it if she doesn't eat. Maybe I need to grow a pair and make her eat healthy meals. And if she doesn't eat it, oh well, you aren't getting frozen waffles for dinner anyway. As sad as it sounds, I just got over her expectation that I will eat the garbage she eats because 'every needs to eat the same thing at dinner.' Once I gained 5 lbs I said 'enough is enough' and I eat what is healthy while Husband and her eat whatever else they want (Mac N' Cheese, Frozen Waffles, etc.)

Overall, it sounds like I just need to grow a pair, which I accept. Tonight was a particularly bad night with her getting changed for bed (refusing to help, dead weighting, not wanting to stand.) She was in the bathroom for half an hour because she refused to stand up to get her butt wiped clean. I told my husband refusing to let her just lean on me the entire time was hard, because I try to be as efficient as possible and its hard not to just get it done as fast as I can (hold her up while wiping and dressing) and get her into bed so I can do laundry and dishes. I feel like if I was capable of being difficult and belligerent with my elders I wouldn't have taken up this 'career.' However, I feel like the fault really is with me and I need to stop enabling the destructive behavior if I expect my situation to improve.

Again, thank you for all the input.
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Your intentions were awesome. And you really thought you could keep Granny in her home as she wants. Good for you!

But the stroke changed her, changed her needs, and impacted her personality. Stroke often is accompanied by changes in the brain. Many people who have a stroke are eventually diagnosed with dementia, but even without that diagnosis they may very well have damage in their brain.

So your question about whether she truly can't do something or is being manipulative is a valid one. If we could be certain that there is no brain damage then it sounds like manipulation, doesn't it? Then the "tough love" approach can produce some good results. It might be worth trying.

But we really can't be certain that there is no brain damage, can we? If she acts helpless at some point it may that her damaged brain is giving her signals that she is helpless. And this can fluctuate throughout the day.

I'd say that through no fault of your own, you've gotten in over your heads. There is no shame in backing out, or in bringing in additional help. You made a decision in good faith, and now that you see the reality you can (and should) make a different decision.

You quit your job. Are you being paid for caregiving? Is it set up as a legitimate job, with tax withholding or quarterly filing? If you are out of the job market for 10 or 20 years, and you are not establishing your own SS account, how do you expect to support yourself in your old age?

If all of your energies and your husband's energies are focused on a cranky old lady, how do you expect to maintain your marriage relationship? That takes some focus too, you know!

You diddn't really know what you were getting in to. And you know what? Granny probably didn't know, either. She was not trying to trick you into sacrificing your youth. She sincerely thought this could work out. All three of you were wrong.

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