Thursday, March 26, 2015


I don't know what it is lately but I have been so tired. On top of that I have felt this heavy, oppressive weight sitting on me that weighs me down as I try to get through my day. For some reason, caregiving, even the word "caregiving", has been bothering me lately and that is what I think is making me so tired. Perhaps, too, it's a bit of depression because it's been raining here a lot and every time I have to go out in the rain or I open my curtains in the morning and see it pouring down, I just want to scream. It's just rain but somehow it's a part of the weight that I feel.

The thing is, Thomas seems to be doing well. His dreams have stopped and he's very social. All of that, though, is marred with little things that happen that are adding up to big things where the title of caregiving is concerned. He came to me the other day after hanging out with a friend I'm not too terribly much a fan of and he told me,

"Jon asked to borrow $100 from me so he can buy his own Airsoft gun."

I wanted to scream! I told him that he didn't even have that kind of money even for himself and that he should be keeping what he does have for himself. I told him that lending money to friends is a slippery slope because after a while, when they're not paying you back, it drives a wedge in the friendship. Well, he must have heard me because he came to me the next time and said,

"Since I'm not going to loan him the money, WE AGREED THAT I WOULD BUY HIM A PATCH FOR HIS JACKET."

I put that in caps for emphasis. "We agreed that I would buy him a patch"??? We agreed? Like as if Thomas somehow owes him that patch since he's not going to lend him the money for the gun. This is what worries me about Thomas. He gets taken advantage of by friends who are devious and he's none the wiser for it. He always feels like it's his duty to take care of his friends financially.

Then the other day my mom took us out for lunch and somehow it came up that Thomas only has $3.00 in his wallet and next to nothing in his bank account. My mom got into her wallet and handed him $40.00 and told him to spend it on himself. I later told him to use some of the money to buy his own BB's since he'd been using some from a good friend of his. I told him to be sure to share his with his friend. This, he does owe his friend, since his friend has been driving him everywhere and providing Thomas with ammunition all without asking for anything in return. The problem was, though, that when he opened his wallet to pay for the BB's I saw that he had 1 full $20 bill and then very little left of the other $20 my mom gave him. I know he had just spent the day with Jon and I know that they go to the store together to get snacks but it was fairly obvious that Thomas has used his money to buy Jon's snacks too. You see, Jon has a job. He has a job and hence his own money. Why is he asking Thomas for money and to pay for his snacks? In my opinion he is clearly taking advantage of Thomas's good heart and is taking what he can get from Thomas.

Making matters worse, Thomas announced to me the other day that he and Jon want to move in together. Can you imagine?!?!? I envision Jon "borrowing" money from Thomas or sticking him with the full rent or not paying for groceries. Worse still is the fact that if Thomas is living independently, he will have his disability money and I can say with certainty that Jon is going to see that as "free money" and expect Thomas to pay for things. This whole living together thing for these two boys is not a good idea. It was Dan who pointed out the disability money thing and my mom who pointed out that Thomas would get stuck with the rent and neither of them, including me, think that it's a good idea for Thomas and Jon to live together.

This, then, brings me back to the "caregiving weight" I am carrying right now. I really want Thomas independent but I don't want it to be like this. I want to see him living with someone who will care about him and respect him. As such, right now, there are no prospects like that and I realized that because of that, Thomas won't be moving out any time soon. For some reason that thought weighs on me.

Then yesterday Thomas woke up and stood around in the living room for a bit and then went back to his room completely skipping breakfast and pills. I went in a little while later, after waiting to see if he was going to put a breakfast together, and I asked him if he was having breakfast. He said he didn't feel like it but when I asked him if it was because he didn't feel like making his smoothie he said that was part of it. I explained to him that he just needs, then, to make a breakfast that is equivalent to the nutrition found in a smoothie and I helped him brainstorm a comparable breakfast. He begrudgingly got up and came into the kitchen. Part of that breakfast was going to be an apple and I knew that he is afraid to cut an apple after cutting himself once (it wasn't a bad cut but it scared him). I knew what I needed to do and that weight appeared again. I asked him if he needed help and he asked me if I could cut his apple, which I did.

I know it's just cutting up an apple, I know that's nothing. I know it's just a matter of a friend taking advantage of him financially. I know that those things and all of the other things lately probably aren't that big of a deal but all of them point to the fact that Thomas is far from being independent and that thought weighs on me. What is our future to hold? Oh yeah, on top of that, I was vacuuming yesterday and decided I'd run the vacuum through his room and I looked around and his room was GROSS. I asked him to move his shoes that sit at the end of his bed and next to the mattress on the floor, jammed up along the edges, was MONTHS of hair, dust and skin flakes. How does he not see how gross that is? How can he live in a room with food and God knows what else all over it and not want to have it clean? Why does it have to be me that sees the disgustingness of all of this and be the one who finally runs a vacuum through the area?

Right now it's so many little "caregiving" things but they are adding up. I am tired. I'll admit that and I admit it because I know many of you out there have to deal with the same or similar things so you'll know what I'm talking about. I really just wish Thomas saw the world differently and knew better how to take care of himself. I'm teaching him things where I can but I feel like I've got a finger in a quickly cracking, about to burst, dam and I know I'm not going to be able to stop the tidal wave of water that comes crashing through eventually.

The realities of this illness are so glaring right now and honestly they weigh a ton on my shoulders and in my heart and mind.

I'm exhausted.

1 comment:

  1. Thank you so much for writing everything out. I don't feel so alone in what I'm dealing with. I have worked in mental health group homes literally my whole life. I was raised by an aunt who ran one in our home. I feel God gave me that gift to learn how to handle the diagnosises of my own children. I don't personally know any parents who have children with schizophrenia. I know there has to be a few in our area but not to my knowledge. I haven't found support groups or anything yet. Lately, i feel exactly as you do in your blog. I used to feel the same way about my son who was diagnosed with aspergers. Now he is married and expecting a child. I just keep holding on to how it changed positively for him. So, maybe the same will happen for my daughter also. Have a blessed night knowing you helped me know i am not alone. :)


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