Here's a handy little piece of information it would have been nice to have known.
I was told by Department of Human Services, when Alan went on SSI, that he would automatically get medicaid but it would drop when his disability started, BUT he would still get medicaid through another source. It would just be paid through a different department.
Yeah right. Here's what I wasn't told.
When the disability started his medicaid dropped. What they didn't tell me: his medicaid would not start again for TWO YEARS! So now, Alan is once again not covered.
I had just landed a part time job because a caretaker was being paid by his medicaid. JUST STARTED THE JOB. Now I'm out of a caretaker again for 24 months.
I've made phone calls. I've cried, complained, whined, looked sad, all to no avail. That's just the rule or the law or something. I have no clue where to turn now. All of the things that provide respite care are paid by medicaid, and I'm betting the farm that any insurance isn't going to pay. If it did it wouldn't be affordable.
Having a caretaker come in was so wonderful. I had just started snapping out of that hellish caretaker burnout I was in. I had not had any relief for 2 years. Now all I can look forward to is another two with no or little relief.
I need to be able to work. Like lots of you, the only income I have is my medicare. That's hardly enough to barely exist much less afford anything else.
My only option, at this point, is to drag Alan around with me while I'm working. That is not a good situation for him. If you're dealing with someone who has dementia, you know they wander restlessly, back and forth all day long. I'm a process server. I can't leave him in the car because it's too hot, not to mention he just might not be there when I get back.
Since I'm a process server, my car is a rolling office. When left in the car, he rummages through everything, leaving my "rolling office" in shambles. And of course, that just irritates the snot out of me. He's just completely uncomfortable having to sit that long. It's not fair to him to be miserable so I can work and it's not fair to me to be irritable at him because he's miserable.
I've had friends offer to help but they would have to drive long distances to get here. That's not acceptable, as far as I'm concerned. I just need someone who can be here, like once or twice a week. Their only job….go for a walk with him, keep him out of MY things and don't let him leave the stove on and burn my house down. He sleeps a lot. So the caretaker is free to read a book, watch television, talk on the phone to their little heart's content.
I will find a solution because I'm not going to let myself burnout again. (She says confidently, even though she has a growing knot in her stomach.)