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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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Why do people always say "dumped in a home"? My mom is in a well run nursing home because she needed more care than any of us would be able to give her in a private house. She has medical supervision, social stimulation and a well regulated diet. I don't see the downside.

You can lift her? Except you've injured your back. No. You CAN'T lift her.
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You guys are 29 and 30 years old. Granny could live a long time. You quit a job, both your backs are injured. You have to make a choice. Are you willing to sacrifice you lives to be full time caregivers?

You guys and Granny will be much better off if she is placed in a good facility. Would you want your 30 year old grandchild to sacrifice their life to care for you? You guys need to give some serious thought to this. The only alternative is round the clock help in your home. Depending on funding this may not be realistic.
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If grandma wants to stay at home then she's going to have to make some sacrifices just like you and your husband have made sacrifices. I think you should explain this to her.

While I was reading your post and before I even got to the point where you talked about your back problems I was thinking to myself as I was reading, "She's ruining her body." Your back may recover but not if you continually strain it. You're looking at back problems now for the rest of your life and you're only 29!

If you're transferring your grandma and she goes limp don't continue the transfer. Put her back where she was and tell her that until she can participate you aren't going to transfer her. Give her verbal cues each transfer, "Now scoot to the edge of the seat, push up from the arms of the chair, on the count of 3 we're going to go. 1....2....3....up you go." Etc. And while you're transferring her continue to encourage her to keep her back and legs straight.

You wrote that you weren't sure if she was being stubborn or if she actually isn't able to help in her transfers. Yet when she wanted to get into her chair, you wrote, and didn't want to wait till your husband got home she got into her chair just fine. That should tell you something.

You're not being a jerk and I think some tough love is needed. Hand her the hairbrush and let her brush her own hair. Set her up so she can brush her teeth herself.

I don't know how old grandma is but if your husband is only 30 she could be in her early 80's and this could go on for years. Stop carrying her around so she can participate in her own care.
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I know you love her , but you are being manipulated! You have observed her standing straight up and under her own power when she Really wanted something, and wasn't willing to wait for your husband! When you really injure your back and can no longer do these maneuvers for her, who is going to care for her? You need a tough love approach with Granny, or you will soon find your way to permanent back pain, that will haunt you the rest of your life. Unless she has dementia, and cannot retain information expressed to her, then you should be able to reason with her. Tell her flat out, that your back is really hurting from lifting her dead weight and that if she doesn't participate 100%, as PT has shown her to do, the you will have no choice but to put her in to a Nursing home, where they have 2 person transfer available for her 24/7. Another thought is the THREAT of hoyer lift though she probably doesn't qualify for one. Yes, they are big clunky, slow and time consuming, and nobody ever wants to use one, unless there is absolutely no other alternative, so that may a little fib you could tell her to get her to cooperate. Remember, everybody hears "be careful with your back" when they are in their 20's and 30's, but 30 years later, you'll know exactly why!
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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.

Sorry.
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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.
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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 years...one 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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I'm concerned more for your spirit, your health and your back than for grandma.
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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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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.
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