I've found myself as a caregiver to a friend with MS. She disputes the diagnosis (partially) because she feels that her primary physician and neurologists are dismissing other physical issues that she has. I have much experience with other disabilities, but not so much with MS. I'm trying hard to help her, and I feel I'm not doing as well as I might.
Bless your heart...thank you. I've printed your response and will read it to L. tonight.
Much will change, though, because I've been replaced as primary caregiver. (Looooong story.) I'll certainly pass on the information I've learned to my replacement, and I'll certainly stay in touch with L.
Thank you so much! I have many questions, but I'll pepper you with just a few for now. (I wrote up some semi-clinical intake notes two weeks ago...anyone with lots of time is welcome to read them.)
First, diet. L has a colostomy bag, and avoids certain foods because she thinks they're gaseous. Vegetables, for example. But she eats full-fat dairy, wheat, saturated fats, and potatoes. She takes no supplement other than vitamin D. I'm encouraging her to eat more healthfully, but she's fighting hard for her independence. As she should. Suggestions?
Second, humidity. L. is always parched, as is her skin, no doubt in part because the A/C is on constantly. She worries that a humidifier would exacerbate her symptoms. Thoughts?
Third, padding. L. is very thin and has little muscle mass. It's painful for her to lie in bed - which is where she is all the time. Her landlord (a walking saint) created some strap-on pads of cut-up foam rubber. They work, but they're not ideal. Recommendations?
Fourth, paranoia. L. is fretful and forgetful, and doesn't trust easily. Understandable. She has reason to be mistrustful, from what I've heard, even of family members. She expressed some suspicion about me yesterday, and I'd like to address it cautiously. I've worked for years with people with dementia, but that isn't the case here. Insights?
Thanks again for your response (sorry for my long one). I've posted on two other sites and have yet to see a reply.