Could somebody please tell me what to expect? How much worse will Donny get before it's over? How much time do we have left? Isn't there anybody out there who has some idea of what's going to happen?
I don't know how much more I can handle. And I don't know what I'll do when I can't care for him anymore. If we're nowhere near the end, and it's going to get a lot worse, I just might lose my mind.
Do you have any idea what it's like to watch your husband lose his mental function? Donny was never book smart, but he used to have street smarts that could get you through anything. Now he can't dress himself unless he's wearing sweats and a tshirt. And even then he can't always dress himself. And don't even think about getting him to shower by himself. How much worse can it get?
I fear the day that we have to switch to using diapers with him. I can change a baby, but how do you change an adult? And yet, I can't be home all the time to take him to the bathroom. Life has to keep going somehow. What will I do?
Our insurance doesn't cover a nursing home, so there's no way in hell that they'll cover home nursing. And if I can't get Social Security to declare him disabled, then most services for low income disabled people aren't available to us.
I feel like I'm beating my head against a wall. All I want is good healthcare for my husband, but I can't figure out how to get that.
If a doctor could tell me what to expect I could at least start looking for solutions to coming problems, but they're vague at best. And the specialist that's supposed to see him keeps putting him off. I keep get the feeling that folks are just making excuses, biding their time, waiting til he dies. Then the problem goes away, and they never have to deal with it.
Our regualr doctor does what he can, but this isn't his area of expertise. He tries to help me, but he can't force other people to do anything. He just can't provide the answers that I need.
Where are all the answers?