daughter caregiver/Mom MSA

[Guest guest]

Dear Noreen, an all: Like you, I am a long-distance caregiver for my mother who has MSA. She is 70 and lives in Las Vegas, Nevada, while I live in Albuquerque, New Mexico. She lives with her husband, my step-father, who is limited in his own caretaking abilities. They have several different home helpers, none of them versed in MSA or similar problems, though one was a nurse for a long time. The helpers come a few times a week, a few hours at a time; enough to get my mother bathed, dressed, fed in the morning, and ready for bed at night. They were traumatized recently by an experience with a home health worker who stole my mother's pain pills, so the homecare option is certainly not without its complications. My mother really needs a secretary--someone to help her file all her insurance papers, write notes to people, write lists for her of things she needs to remember, etc., but has no one to do this kind of thing for her. I do it when I visit, but that's only about every 3 months. I have a sibling in Australia and another in California; they are able to visit even less frequently than I am. I try to keep current with this listserv and with my mother's condition, but I can't really DO very much. I write often, call often, and pass on what info I can. Her husband is not very receptive to anything I have to say, and will not have anything to do with this support group. They've tried to maintain ties to their original Parkinson's support group, but they can't make the meetings like they used to. Her husband has a hard time following through on things that the doctor recommends (a custom-built wheelchair, for example--it was prescribed ages ago, but they have never actually procured it). My mother is very sharp, mentally, and trapped in a body that will no longer cooperate. She can keep track of all her medications, doctors appointments, etc., but cannot do very many things for herself. She told me once she could still manage to put on her lipstick, however, and I told her I was glad to see she had her priorities straight! Well, I really don't have much more to add to the practical advice you've been given by members of the list--I just wanted you to know that there is another adult daughter of an MSA-afflicted mom on this list (I'll be 43 this week, and I have 2 kids, 17 and 14) . Warmly, intro Hello, I'm a new member to this site. My mom was diagnosed with shy-drager last Spring and she most likely has had it for 3 years. She isonly 60 years old. She is just really starting to learn what herfuture may be like and she is very depressed. She had alreadysuffered from depression throughout her life and this diagnosis hashit her very hard. As her adult daughter I am very concerned abouther and want to be as supportive as I can. I live 2 hours away fromher and am only able to visit once a month but we speak by phoneregularly. Can anyone who has a parent with shy-drager share theirexperiences as an adult child? Any helpful suggestions would beappreciated. I am also trying to find out about support groups formy mother and father to attend in the Central Massachusetts area.I'd also like to find a support group for family members in CentralConnecticut.Thank you much,NoreenIf you do not wish to belong to shydrager, you mayunsubscribe by sending a blank email toshydrager-unsubscribe