Coping With Multisystem Atrophy

My mother was diagnosed with Parkinson’s in 2005. The combination of her symptoms and the speed with which her health worsened convinced doctors to change the diagnosis to MSA. She is turning 60 this year, her golden years, and is now completely bedridden. She cannot push herself back in her seat. Home care became overwhelming, even though we have so many family members. It was becoming more and more dangerous for her, as well, because of her imbalance and inability to walk. She fell so many times — more often than not hitting her head.

We have moved her into a nursing home — it is very nice, serene, calm. She has round-the-clock care available, while living in her own apartment. Family members visit all day long. She is showing some signs of dementia. Because her eyes are constantly watering, she can no longer read, which is her favorite activity. Our family is very close and has become even more so over the past few years.

My mother is my best friend. My dad bathes her everyday; my sisters stock her kitchen, cook her favorite foods; my brothers-in-law set up her television, telephones, radio; my boyfriend and I (who live out-of-town, but close) gave her numerous audiobooks and when I visit (which is about twice monthly), I stay with her, because often her most lucid moments are late in the night. It can be devastating, especially if I think about it too much (I am a brooder); but when I am with my mother and the rest of my family, I remind myself of how fortunate we are, how much love we all have for one another.

Please, don’t be timid to ask loved ones for help. It is so important to make sure that while the one with MSA is made comfortable, that caregivers, too, receive respite from the emotionally and physically draining hours. Talk to friends — my support network often is the only thing holding me together. Reach out to the people around you and hopefully some of the pain will be alleviated. It is a terrible thing to watch the suffering of a cherished one.