My grandmother has Parkinson's. She is becoming bitter and doesn't want to cooperate with us, but also doesn't want to go into a nursing home. We don't want to put her in a nursing home while she is so adamantly against it, but we're at our wit's end and running out of options. The Parkinson's is not at a stage preventing mobility, she can get around with a walker perfectly well (and on and off the toilet, and so forth), when she wants to. She frequently refuses to change her Depend, even though it's wet and she's perfectly capable of changing it herself. At such times she simply refuses to get out of bed, peeing in the depend until it overflows. We then have to change her in her bed. Sometimes she permits us, sometimes she fights us. Literally fights -- hitting, scratching, biting. Other times she removes her Depend and the chuck, throwing them on the floor and refusing to let us put another one one her. Sometimes they're wet at this point, sometimes dry. Obviously, without the Depend on, she wets the bed. And without the chuck underneath her, this forces us to change not only her clothes and the chuck, but also the sheets and the mattress pad. Today when this happened, and we tried to get her out of bed to change the bed and put a new Depend on her, she fought us until she was able to lie down on the floor, and peed on the floor. Best I can tell, the peeing on the floor was on purpose. At least she claimed after the fact that it was.
A very dear friend of ours had a severe stroke 6 years ago and about 1 1l2 years ago, a dear mutual friend and I went with our friend and his wife to his appointment with the neurologist. The doctor seemed to be more reactive to the concerns of our friend's wife which she said he hadn't been before we went with them. I was also taking notes.
Also had a similar situation with our son. Doctor kept down playing our son's symptoms but when my husband and I went along with our (adult) son, the doctor seemed to be more "interested" in helping him.
In general, it's really difficult to cram a month's worth of experiences, problems, and requests for solutions into a single monthly doctor's visit with her GP. And it's even more difficult to cram 3 month's worth into a single, quarterly doctor's visit with her Parkinson's specialist.