How do you deal with it.... when no one understands?

[sfcambridge]

I appreciate hearing everyone's thoughts and experience. My heart goes out to you...

It has been hard to find resources when you are not so poor that you qualify for Medicaid. It has also been frustrating that some agencies wont even talk with you/give you support and ideas unless you have Medicaid.

My father's disability includes being a wheelchair user. He can push himself in the chair, and this is good exercise for him. But it is very very hard to live in a wheelchair. We have had a very hard time finding out things relevant to wheelchair accessibility in his area and home help for folks who have his type of injuries.

Amazingly, there is a publicly funded agency specifically targeting folks with disability trying to live in the community called Access Living in the town next to my father's. They even have folks who are paralyzed like my father who work there. But they refused to help us and give us advice because my father is over 59 years old. They said he has to go to the Department of Aging places.... but these places for the elderly know nothing about paralysis and living in a wheelchair. Except.... "go to nursing home...."

Sometimes it's things like this that push me over the edge. When the Access Living folks made me beg to get passed the secretary, and then referred me back to the Aging offices that knew nothing, I just burst into tears.... It would have cost them nothing just to talk with me and give me advice. I am assuming they are not cruel... ?just lazy? But I hate that my tax dollars are paying people who refuse to help me.

[Lee W.]

That's a shame! You needed help and advice and they just did what so many do these days. Have you spoken with a social worker? Sometimes they find the right resources, sometimes not. One thing we've had trouble with is the place we own. It is small and is is not set up for a disabled person and he can't really get around inside with his electric wheelchair, so we leave it in the car for trips into town. DH can usually get from bed to chair and up to the bathroom. But his mobility is getting more limited as time goes by. We can't afford to remodel. Have done a few less expensive changes, but even if we could get a loan, we know it wouldn't be a good idea to be left with that kind of large debt and payments.

[no kudzu]

Please get your Dad's doctor and or nurses involved. Surely a physician who is caring for a paralyzed man will have access to resources for help. What about any universities in your area? or major hospitals. I know there has to be someone who can direct you to help.

I understand the financial situation. The middle class has to end up spending down to poverty to be able to benefit from a system they have contributed to all their lives.

Look online for Elder Care specialty attorneys in your area. You need to talk about how to have your parents transfer any property into your name, Durable power of Attorney and all other sorts of legal matters.

But the isolation seems to be your major concern right now and that can be debilitating. FORCE yourself out of the house, make new friends, hire inhome care for your Dad so you can have some semblance of a life. Good luck.