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.