Saturday, May 19, 2012


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.)

Wednesday, May 9, 2012


I would never have suspected I had slipped into caretaker burnout, mostly because I didn't know what to watch for. I've always been somewhat of a hermit, preferring to stay in my house most of the time. I've never been a social butterfly so it seemed natural to me to not want to go anywhere. I also didn't want to do anything. I had no energy, no desire to get out of bed. No desire to get out of my chair. It even pissed me off to have to get up to go pee.

My intentions were to go out everyday when I had someone here for Alan. First day…I didn't do it. I told myself it was probably better for me to stay until he got used to having someone else here. I went back to bed while caretaker (CT) was here.

Second time….stayed home with CT. Told myself I just wanted to visit with CT because she was so interesting. Went back to bed again.

Day 3…didn't want to have to do my hair. Did it and went to visit my pastor-sergeant-friend. Enjoyed it.

Monday, Day 4…Didn't want to have to do my hair again. Just too tired and don't care.

Wednesday, Day 5…My 12-step sponsor actually hollered at me over the phone, ordering me to "GET OUT OF THAT HOUSE." I dragged my feet but finally got my hair done and went to see same friend I saw on day 3.

On the way home some of the cobwebs began to disappear and I decided I felt good enough to go buy some new phones because my house phones had died. Did that. Decided to go see about joining a gym. Checked a place where I could afford to take Alan to exercise. OOPS! Time for CT to go home.

I went and picked up Alan and we went to the market.

Thursday is not a respite day but I got up and could tell immediately I was beginning to feel better. By Friday, I was up and out of the house right after CT arrived.

Monday went to visit a friend.
Tuesday made arrangements to take Alan to some Yoga and Zumba Gold classes.  Don't know if Alan can do the Zumba but he always loved to dance. Think he'll love it and he'll get exercise he needs.

Getting ready to sign myself up at the gym where they have machines I can use. It's right across the street from Alan's yoga classes. Caretaker can take Alan to his classes while I'm exercising at the gym. How cool!

I should have checked to see what caretaker burnout was. I really thought they were talking about turning into a screaming maniac and I didn't have that problem. I was just sinking deeper into myself and had absolutely no energy. I finally got where I couldn't write my blogs. I'm grateful to be out of the burnout. I won't let myself fall into that trap again.

And I'm back to blogging again which I really enjoy.

I had friends who offered to stay and let me out of the house for a while. I always turned down the opportunity….guilt? Probably. But then I really thought I was fine.

A word of warning: You'll be doing yourself a favor if you prevent burnout instead of trying to SNAP OUT of burnout.