Yesterday, I spent most of the day worrying and a part of the day in the hospital. My brother-in-law has multiple systems atrophy. It is a terminal form of MS that has an element of dimentia. He had two very severe seizures Tuesday night that set him back noticeably. His personality is changing. He and my sister have two elementary aged kids. She is in the slow process of losing her partner and the kids a father. I am so sad that it hurts. There is very little in the way of support for this family because of the age of my brother-in-law (51). There is enough help out there for elder people, but not for this type of illness/age group. She has her church family, her friends, and of course, her family. But not much in the way of other people who are simultaneously dealing with this disease. And as for my brother-in-law, I can't imagine the loneliness that he must feel.
I am sorry to post such a dark message on Valentines Day, the day of love, but I wanted to also talk about how I have observed my sister and her husband's love grow in spite of MSA. It has deepened. There is much more sharing and much more raw, unthreatened, uncompromised affection. There is more flexibility and understanding of needs. I am so in awe.