Is there something else we should be doing?
I haven't posted for a while as I have been really struggling with the decision to put my mum in a home. My dad wasn't coping and she was awarded continuing care. When I enquired, the continuing care health fund could only offer a visit 4 times a day and 2 nights which was not enough care for me to be able to have her home with me as I work, have 2 children and another due in April.
My dad has found a truly lovely home for her and she has been there since mid Dec. Obviously, although the care she has is excellent and the people there are very caring, I still arrive to visit to find her mouth really dry, or she needs changing I thought I may start to feel better about it as time went on but I don't. I dread visiting her as I don't like leaving her there and if I miss a day of visiting, I feel such guilt. Basically, I am driving myself crazy.
Since she has been there, she has not been out of bed once. We did request that they take her out and try to put her in a recliner in the lounge so that she has a change of scenery, but they felt it was too risky as she cannot support herself and flops to the side. Her muscles are wasting away and now one leg is pulled up to her chest constantly. If we try to straighten it, she looks like she is in pain.
They have suggested nil per mouth because her swallowing is so bad but when we visit, we take her soup or thickened drinks and swab her mouth with water as the oral care they give leaves this dry residue on her lips etc. She is PEG fed.
She cannot communicate at all by speaking and even when we ask her to blink or raise an arm to indicate yes or no to questions, she cannot always respond, although this is hit and miss and sometimes we get excellent responses from her.
So, she is bedridden, can't communicate and can't really eat or drink which is probably as bad as it can get.
What I am wondering is, is this inevitable? If we insisted that she be taken out of bed (perhaps if we bought one of those wheelchairs that have neck support) would she build a little strength and be less rigid. Do all people with PSP end up bedridden and curled up? Is there anything we could be doing to improve her quality of life? Or would she just find it traumatic to be taken out of bed? Does she get bored lying there or does the brain protect itself and she perhaps doesn't feel it like we would. Mostly, she seems comfortable I have to say and not in pain, but it is so hard when we have no idea what she is thinking or feeling.
Can anyone with any experiences of the end stages of PSP give me any advice, ideas or reassurance?