Frustration with Attitudes

I have noticed over the past years an attitude in my husband's doctors and therapists that really disturbs me. Because Vince is 74 and because he has a degenerative illness for which there is no cure, they don't try very hard to do anything for him - I know they're thinking it's not worth it.

Medicare's physical therapists don't want to work with Vince because they won't "improve" him; but if he doesn't get therapy, he will worsen; he needs therapy to maintain the strength he has left - which, by the way, is a lot! I have hired a private massage therapist who works Vince out every three weeks (I'd do it more often if I could afford it). He thinks Vince has the strength of someone in his fifties, and he does a wonderful job stretching Vince and working him out for an hour.

Then there're the doctors - they don't do research to try to find creative ways to help Vince; any medications he's gotten to help certain symptoms have been at my suggestion, from my reading of FXTAS research and contacting the FXTAS research doctors in Calif. Everyone has just given up on him! But I can't do that. What am I supposed to do? I love him, and I'm grateful for any words he can still say to me and any steps he can still take. I'm grateful for just his presence. I can't write him off like the doctors have.

Vince is completely healthy aside from his brain not functioning - what if they DO discover a cure while he is still alive? It's not likely, but it's not impossible. I'm not delusional, but I can't NOT do my best for Vince. What else can I do?

I know in the grand scheme of things, people don't feel as badly for sick older people as they do for sick younger people. But a person is a person, a creation of God, and it is for God to decide how long we live. As long as a person is alive, he/she deserves as many rights as anyone else. Are we just supposed to put sick people to bed and wait for them to die? I am just so sick of this attitude!

My husband is still alive - he still counts - he is as human as anyone else and I love him, and I will continue to do everything I can to give him a decent life, so help me God!!