It has been quite a journey. My wife and I have been caregivers for 41
years. When he was younger it seemed to be easier. Now he is so big and
the difficulty is greater because my wife and I are now in our 60s. I
wish I could tell some of you otherwise, but it
doesn't get easier.

Of course he is dear to us and we do all we can to make his life easier,
but in the process we have to give up so much ourselves. When we were
younger and his brother and sister were younger and at home it was a big
help to us and we could have more of a life. But, those days are long
gone. And sometimes problems develop with sibling that you don't
anticipate. His sister is great and still provides us with help, but his
brother, who is also older than he is (by about 6 years) stays as far away
from us and his brother as he can. Not that he isn't loveable, just very
distant on purpose.

We are experiencing some new problems. Rick is on medicare and for about
the last half a dozen years or so he has been classed as a "family of one"
and receives medicaid also. However no one wants to take medicaid here. It
is good for covering his scripts but little else locally and for medical
care we are limited and the doctors seem to know less than they did when
he was younger. We take him to a university hospital about 40 miles away
and I'm not at all pleased with the care he receives there.

He now has a very acute knee problem. He needs it drained on a regular
basis and scar tissue is building up to where treatment is problematic. It
is painful for him too. His diet is restricted because he has difficulty
swallowing also. There is much more but I won't bore you. If anyone is
interested and has some similar experiences they would like to talk about,
write me.

Hank Roth