Mom is bedridden (not just bedbound, just learned the distinction) and getting hospice care, and aides twice daily, living with her husband my dad. I know the losses are cumulative and some sadness in caregivers is normal. This morning I went to look for advice on muscle wasting because her legs are getting so very skinny. The caregiver site laid out a long scenario of someone on hospice who had oodles of grandkids, someone always around, happy hour every day, storytelling, a vibrant social life. My mom has her aides but some are talkative and some just sit on their phones when not actively working. Family is around and helping but we have our own lives too. Dad makes a point of chatting with Mom for a few minutes throughout the day but will then set her up with the TV or a movie and go off to his study which, okay, he has his life too. I don’t know there’s anything to be done for the muscle wasting. I live out of town but come by to visit for a few days 1-2 times a month. I just—she complains if we try to file her toenails, one got so curved it was causing an infection and she went on antibiotics, that’s mostly resolved. It’s in danger of happening again with some of her other toenails. Three weeks ago she let me do passive ROM with her legs and said that feels good. This time she shut it down and I felt so sad. I’m trying to find things to do for her that still count. The agency aides are not going to do the passive ROM because half are inexperienced and passive and plus my mom says Ouch and asks them to stop. One experienced aide commented yesterday that my mom is very resistant, but, she’s lost so much independence so shouldn’t she be allowed to say No to things? But then what do you do? Just feeling overwhelmed and like nothing is ever enough. And then the composite scenario on the website has me feeling like there are other families out there doing it better. She has Lewy Body and doesn’t get out of bed ever. Cannot move her limbs on her own. Sadness. Thanks for listening to me ramble this morning.
Another thought I had that was helpful was, to broaden my outlook and realize that helping my sister pack, cooking and making phone calls for my dad and all the other things I do while I’m around, is a way of showing caring for the family system as a whole, which certainly honors my mother and her values, even if some of the things that have occurred to me to want to do, she now refuses, or wouldn’t be of much help to her anymore.
She won't get better...she can't get better, so just allow her to live out her final days in comfort and peace.