My brother has pervasive disability syndrome and cerebral palsy (C.P.). He was a fairly high functioning adult, living in a Supported Living Arrangement and holding down a series of jobs, the last one for more than 10 years as a supply clerk at a school. He is currently 62.
My brother did fairly well until there were two catastrophic events. His best friend and roommate died about 7 years ago, right around the time he started to lose a lot of muscle strength and developed afibrillation (afib). My parents have also passed away in the last 5 years.
My family was shocked to find out that his roommate was doing most of Barry’s housework and helping out with his essential daily living. It turns out his roommate was doing the cooking, cleaning, and even taking care of my brother's hygiene by insisting that he shower, and shaving him (my brother has a very heavy beard and cannot shave because of his C.P.
At the same time, it became apparent he was losing a lot of muscle mass. He started falling a lot, broke bones, and it took several years for it to become obvious he also had afib. We were fortunate in that as he was working, he had pretty good health insurance. But the insurance company did not understand that he could not live on his own with a broken foot because of his CP, and had to be in a skilled nursing facility. I think the CP was also a reason for why my brother doesn’t heal very quickly, he was in a cast for 10 weeks for a broken bone in his foot.) The issue is that once he is incapacitate and sedentary, he starts losing muscle mass very quickly and all the more needs physical therapy.
When my parents entered their eighties, it became obvious I had to start managing my brother’s living and medical situation, which I am still doing.
I have never been able to find a suitable living situation for my brother. He needs 24-7 supervision for taking at least 7-8 medications a day with different timetables. He needs to be stood over to eat and walk (he has lost about 60-70 lbs and is almost anorexic). He gets depressed. He needs activities to keep his mind and body busy. Cognitively, he needs to be with people like himself, but to my knowledge, the State of Illinois
I had him in assisted living for a year (assisted living had refused him in the past because they didn’t want someone with developmental disabilities, but I think I finally found a place for him because the economy is so bad, they will take anyone who has the money.) I am fortunate because my parents planned ahead and left me some funds for him. However, he needed more supervision that the residence could offer. He has been in the hospital at least 8-10 times in the last two years, and has almost died three times this year, twice from an infected gall bladder where he went septic, and once from congestive heart failure.
He is now in a fairly decent nursing home in a Medicaid bed (and that is a whole other story, I could go on and on about how prejudicial nursing homes are towards the developmentally disabled because they are afraid they will live forever and are too much trouble) and adjusting. However, he is only 62 and does not belong on a floor with stroke victims and people who are wheel chair bound (he is using a walker.)
When I was growing up I always knew I was going to have to take care of my brother, but I never dreamed it would be so difficult and time consuming, let alone so, so depressing. It has affected my own family life (I have not been able to go on vacation for over 2 years because of my brother’s serious illnesses); I feel it has robbed me of my daughter’s teenage years, and she will be moving out of the house soon.
I have no trouble assuming responsibility for my brother’s care. I am his only living relative, I love him, and I will do whatever I have to do to keep him alive and as happy as possible. However, it sure would be nice if society would step up to the plate more and help out. I can’t imagine how it must be for families who lack the financial resources that I have.
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