Good Things: Caregivers

I promised on Here Be Dragons to write something happy, and I have lists of good things to write about. The darker issues keep butting in on my happy little blog. I am not saying they are not important but it is important too to look at the good. I just spent two  hours listening to some Lady Gaga, and feel nice and relaxed after an eight hour nap. It was supposed to be just a little lay down time to make my body stop hurting but I must’ve been lower on spoons than I realized.

I have found it a bit amusing lately how many people are stunned that I like Lady Gaga. Is her music perfect?  Nope. Her stage name cracks me up and it took me a long time to decide to like her work. It’s catchy, she is blatantly poppy, and of course as a white woman who has bleached her hair blonde she fits into the societal norms, and her videos often have a dearth of people of color. I don’t know how much of this is in her control but her videos also address issues like domestic violence (Paparazzi does have this element there), human trafficking (Bad Romance), and she has made a video that is blatantly homosexual (Teeth). I think it’s fantastic.

Part of what I am enjoying about my new caregivers is a lack of judgemental behavior. Yes there is some but it is usually to my benefit. We have fallen into our patterns, which I need personally. There are the set daily chores, like watering the bamboo plants or cleaning her Meowjesty’s food bowl. It’s not really to spoil Sprite of course but is a cleanliness issue for me. Piles of rotting cat food are just nasty, and other methods didn’t work for me or Sprite. There has been none of the niggling doubts about my safety. There has been none of the stress that I associate with having a caregiver. Other stres? Absolutely. My sink exploded with sewage and that was really bad. Having a caregiver present allowed me to have enough spoons to get that taken care of. My pipes got steralized too, because of my weak immune system. This is also why all water I consume is BOILED.

I have company coming over tomorrow, and in the discussion of the potential plans for the day I suggested that I may send my carer to the store. She’s already nabbing a tax form for me, because mine never showed in the mail. (Thanks IRS, I can just run out and grab those right? Uh… no.) I know I cut it close, I had multiple requests put in to have them mailed out to me, but you know it just didn’t happen. She asked if I was sure I wanted to be alone with people. She then realized I may have been offended and made sure I knew the why. I did before she told me, but appreciated confirmation.

Why did she ask if I am comfortable being alone with someone here?

Reason 1. I am not comfortable with most people.

Reason 2. I am very private and having people come in usually leaves me feeling poorly and she noticed even a simple five minute visit from a neighbor sets me on edge.

Reason 3. Am I safe? We all know not everyone in my life is the best person and some are quite rancid.

There was a fourth reason but it melded with the others and I forgot the words for it. I told her that I always can change my mind but I think I will be fine. I also made sure she knew I appreciated this. Both caregivers for the week and the week end are aware that they trusted. Sprite hired them both and made that clear too. They screw with me they answer to her. This causes some amusement but they take her trust as seriously as mine.

With both I also know if I need them and we are over hours I will still have my needs met. I am not just a paycheck, but first and foremost I am a person and if I call on them after hours they know it’s an emergency. This was already proven by L, the weekend caregiver who stayed until she was sure that there would be NO sewage pouring out of my pipes and also when she thought I might need to go to the ER. I thought  I might too over that stomach blockage and a few other things. I also made sure that I can text at least one of them if my jaw ever dislocates again and locks down where I must seek help and can’t talk for it.

The schedule on hours is too small, and my caregivers and the agency have agreed to help me petition my insurance for more hours. The increase will likely be by 15 hours more, and that can make a huge difference. I will no longer have just what I must do done but also what I want done. I may even get to see the Bat Mobile this year! It’s coming to a comic store near me on May 1st. Last year it was not there due to rain. Understandably so but, the Bat Mobile IS the Bat Mobile.

All in all, I haven’t had a single caregiver as good as either of the women working with me. Now I have two that I would qualify as the power houses of caregiving. If I ask them to do something they ask how not why. I may tell them why but usually they get it. There is no questioning my food needs, but instead food has become a celebration of my ideas. My meat cake never would’ve happened with other caregivers and I was very excited to get to create again.

I am creating. I am excited. Yes, the depression is still kicking my butt. I know if I need to call for help to protect me from me there won’t be a summary dismissal of need, a dismissal of value, but instead the help I need will be given without pressure to slip away into the institutions that try and suck all humanity up into their vortex of evil.

I get to be a human being again. I’d forgotten what this was like.


  1. Re, your water issues — I know money is enormously tight for you, but might it be worth exploring options for filtering your water? There are water filtration systems that can be attached to your faucet for maybe $100-$200, though you do then need to replace the filter inside it every 2-3 months (I forget the cost, something like $20 to $30). So it’s not cheap if your budget is limited. But boiling, if I understand correctly, doesn’t kill all things bad for you, only some of them.

    Years and years ago I read somewhere that Dasani water is one of the few brands of bottled water that is truly safe for people with AIDS to drink (since they too have their immune system issues, and Dasani filters their water more carefully than most). But of course drinking that regularly would also be expensive.

    Maybe there’s a way to research options via google or something. I don’t know what your immunity system issues are, but if they’re sufficiently rare that you can’t be sure of finding something specific to that condition (I do recall you have a lot of rare conditions) then perhaps try researching what people with AIDS do for money-saving options for safe drinking water.

  2. I actually don’t drink water. Right now the only liquid that doesn’t make me sick is Sprite. I dislike the amount of sugar but it’s that or blisters in my throat with everything even fruit juice. I boil the water for cooking only and that has been sufficient. Every solution that I have tried doesn’t make things any better and some of the filtration systems make things worse. That last part amuses me, but the items in the filters can be bad too.

    I haven’t thought of looking into what people with AIDS do, so I will definitely give that a try. The worst that happens is I don’t find anything I haven’t thoroughly tried. Thank you!

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