CHRONIC TONIC posts on Thursdays at 9 p.m. EST. It is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: triv33
Most of you who are regulars here at Chronic Tonic know my situation, but for the benefit of those who don't, I'll lay it out for you. My family lives with my parents. This was originally supposed to be a short term thing, but circumstances changed shortly after we moved in. My youngest son was diagnosed with moderate to severe Autism and because the services are pretty decent in this county and it was thought that living in a house with a backyard and an extended family would be better than just the four of us in an apartment, we stayed.
Soon after we moved in we noticed that my Mom was becoming very forgetful and beginning to repeat herself. A diagnosis of unspecified dementia followed and we knew that we were going to be staying for just as long as they needed us. And they did need us. You see, my 76 year old Dad still rides a forklift from 11-7 every night and he really didn't want Mom alone at night. Also, the things she used to do were becoming exercises in frustration for her, things like cooking. It's hard to make your favorite stew when you can't recall what goes in it. I really didn't mind, even though heavy cleaning and some household chores are hard for me, I could still cook, still be there for her when she made an oops and knocked her teevee off of the satellite and couldn't figure out how to get her signal back, just be there so she wasn't alone and Cleetus (my hubby) stepped up big time with the heavy chores. Besides, at that time we were able to hand Dad some money, buy groceries and help Dad out.
Now, since the time our son was diagnosed with ASD, Cleetus took an overnight shift job too. He wanted to be there, be involved in the home therapy and be the one to take our other son back and forth to school. It wasn't a great job, but it was the hours we needed and it offered health insurance and he stayed, because he's a stand-up guy. On February 22 of this year he was laid off. To our dismay we found that my 600 dollar monthly SSDI together with his unemployment put us about 100 dollars over the amount that would have qualified our family for Medicaid. My little guy has it, he's covered under the children with disability loophole, my older son qualified for CHIP, I have bare bones Medicare and Cleetus is not covered by any insurance, he's naked.
Now, I normally don't speak about any of this outside of this safe space here, but I made the mistake of doing so out of some frustration on my part over the things being argued in the debt ceiling deal. I don't know if people don't realize that for those of us who rely heavily on our SS that not having a COLA for two years has been like a cut--because it certainly has cost more to live. I don't know if they don't understand that things have already been cut at the state level, for instance, my Governor did away with the adult basic insurance program that might have given Cleetus coverage. I don't know if they realize that the lines at the food banks are growing or what it's like to stand in one. No, I don't go every week, but yes, I qualify and I have gone when the cupboards were getting bare and Dad asked me to. Cleetus was very unhappy about it, he told me that there were people far worse off than us and he didn't like me going down there, he was brought up to believe that it's a shameful thing. I told him it sure is, just not in the way you mean.
It's a shame how many people need to be standing in these lines. It's a shame how this country treats the least amongst us, the elderly, the poor, the sick and it's a crying shame that so many don't want see that. But I won't be shamed for finding myself in this circumstance and I'll be damned if I'll be shamed for speaking out about it. I know I'm not alone, a lot of us on disability or unemployment have had to deal with this, but I'm here to tell you--I ain't having any. And I won't stand by silently if I see it being handed to anybody on this site for daring to speak out for finding themselves in circumstances that require help and possibly a little empathy and finding precious little.
It's not about purity, it's about reality. And if you're somebody who's tried to hand out a little shame to someone who has been dealing with hard times? You can keep it.
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