the aging disabled

I woke up today, apprehensive about what I'm going to find when I go visit my brother.  But I checked into the blog and I was delighted to find a comment from mjr,  who has a brother with downs syndrome.  I hope she decides to post blogs on a regular basis.  I have discovered that to post your own piece, rather than respond to one of mine, is that you have to sign into blogger.com.  After that, I'm not sure what you do when you are not the administrator, since I have never done this before.

MJR's comments got me thinking about the convergence of care for the aging developmentally disabled population with the general aging population.  At least in my brother's case, in some ways there are more resources available as my brother's medical situation has deteriorated.  I think that's because he has pervasive disability syndrome (many symptoms with no specific diagnosis) and cerebral palsy.  Up until recently, he was able to live in a Support Living Arrangement (in an apartment with a part time staff that helped with budgeting, paying bills, etc.,) and even work.  He has uneven cognitive ability, with some things he is in the "normal" level, with others he is not.  His IQ, last tested fairly recently, was 80, which led the state to categorize him as not mentally retarded because they want to save money.  In some ways, the cerebral palsy has held him back more than his cognitive issues.  On the other hand he has Asperger's Syndrome and he was irritable and hard to get along with until we got him on a pediatric dose of Risperdol (thanks to our wonderful case manager), which had made a huge difference.  He spends long portions of his day, just sitting in a chair and not interacting with anyone.

I digress.  My brother is 62 but is now living in assisted living with the 85+ crowd.   The doctors have explained that when you have cerebral palsy, you start off in life with a lower level of muscular strength, so when you age, you have less muscle than someone should for your age.  In one leg, my brother is all bone, there is hardly any tissue left at all.  His weakness became apparent about 8 years ago, when he started to have difficulty getting out of his chair.  He now is on a walker.  I try to get him physical therapy periodically to strengthen him up because it really helps.  The problem is that his insurance will only pay for so much and that's it.  He really should have it at least twice a week for the rest of his life.  We try to get him to exercise, but he only does it if you stand over him.  I try to take him on a walk 2-3 times a week.  His assistants are supposed to do that too, but they are not good at coaxing him into doing it.  Medicaid gives him an assistant twice a week to shave him and help him bathe (personal hygiene is a real issue).

What I'm trying to say is that the problems I have describes so far:  eating, personal hygiene, exercise, loneliness (my brother has no friends), boredom, are typical of the infirm elderly.  There are many people in the assisted living facility that have had strokes and look like they may have some similar issues.  I tell myself that everyone has to deal with these issues in their families, it just that my concern is the fact that my brother is only 62 and that I may have to live with them for a very, very long time.  (although he has aged so, so rapidly that may be unlikely, who knows?)