Respite Problems Again

Respite has become a joke, a farce, and an absurdity around here. Sometimes I think the universe has something against me—or maybe it’s just the state of Colorado. It has been two weeks since we were supposed to receive respite care. There has been cancelation after cancelation. So today, I thought for sure the aide would be out. The agency said she would. But why should I ever presume to be so optimistic? Twenty minutes past the time of her arrival, I called the agency. Apparently, she had forgotten to come. At 9:00am, they said she was on her way. However, she never showed up. Now, I ask, is this the type of person I want to care for my son? If she cannot remember a simple appointment time, how is she supposed to provide quality care for Zane? I was supposed to have respite again this coming Wednesday, but now I am in the position where I have to train new people again. Aaaagh! I already trained two people who have never come out to give me a reprieve.

My friends and I have noticed that there seems to be a lackadaisical approach to life in the Durango area: appointments are suggestions, calling people back is optional, medical care is iffy (with the exception of the boys’ pediatrician)—that sort of thing. I am not used to this do-what-you-want attitude that I find in this area. I certainly didn’t grow up with it in the Midwest and didn’t experience it all the years I lived in Phoenix.

If I wasn’t so desperate to receive free time so that I can work my at-home jobs, then I would cancel respite with this agency altogether. Right now, it is more hassle than help.

Ranting about Respite

Respite was supposed to happen today. It didn’t. It feels as though it never will. The aide who was supposed to care for Zane today had to take her mother to the ER last night. I know these things happen, but I was disappointed and a bit miffed nonetheless. I had planned to work all morning, therefore I didn’t work yesterday. Now I am behind. The respite that is supposed to be helping me is a hindrance at this point. Last week, I gave up a few hours to help train the aides and they didn’t even come today. While this may not be a big deal for someone who has loads of free time (like the people who post status updates more than once per day on Facebook), it is a huge deal for me. In addition to caring for Justin and Zane, I work three jobs from home. Time is quite valuable. I must say, I loved spending the time with Zane this morning in lieu of work, but now I have to find time to fit my job duties in this week. Friday is supposed to be my next day of respite. We’ll see if it happens.

Respite

It must be a dream. It can’t possibly be true. Yet, it is happening. I have called, badgered, researched, hoped, wished, kept my fingers crossed, and given up. Now, after all this time, we are finally getting respite services!

I am in the process of going through the required paperwork with a regional home health agency (not the nasty one who provided “services” through Zane’s Pediatric Hospice waiver, but a nicer and kinder one) to start in-home care for him. I have meetings tomorrow with two more people, then respite care should be official by week’s end.

I am easing myself into the process. It is hard relinquish control of Zane’s care after being in charge of it for over two and half years. While I could have someone come out the house every day of the week, I have chosen a more conservative approach: two days a week for three hours each time. That is as much control as I am willing to give up right now. I am sure, with time, I will grow more comfortable with a stranger watching my precious son. But, for now, I am happy with six hours a week.