This scares the sh!t out of me



Gavin is driving me nuts. He’s talking nonstop and it seems like even single step instructions are needed to be repeated multiple times. Absolutely none of this is his fault. He’s not trying to drive me crazy, and I do my best to keep that in mind, but that doesn’t make it any easier to deal with.

It’s pretty overwhelming to face this day in and day out. The only silver lining is that Gavin is very happy and still being maintained in the home. I don’t know how long that will last but all options are limited.

We essentially have two options. Firstly, we could find a way to make things work at home. We would have to do that in such a way that doesn’t negatively impact the majority in the house. Secondly, he could possibly be placed in a group home environment. That is the absolute last resort because much like nursing homes, good ones are few and far between.

Lizze and I are in a place where the idea of continuing the way we’re going seems unsustainable but at the same time, the idea of placing him in a group home is unbearable.

There’s zero chance of Gavin getting better. The only real hope is finding ways to make helping him through life more manageable. Does that make sense?

When I lay in bed at night, overwhelmed and beyond my limit, I can’t help but think about having to do from my nursing home bed at some point. That absolutely scares the shit out of me.

6 comments

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    • Gregorio J Placeres on July 31, 2019 at 6:44 am
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    You closed your choices saying “there no way he can be better” I seen them change open your spectrum.

    1. You are misquoting me. I said, “There’s zero chance of Gavin getting better”. I’m talking about the incurable, untreatable biological conditions that are causing him to regress and lose skills. There’s no chance of them getting better. Gavin struggles more and more as time goes on but continues to do amazing things in spite of those challenges.

  1. There is something I read some time ago that I’ve wanted to mention at the right time. It is this: researchers found that very disabled people (like Gavin) actually cope better if they go into a group home situation (or some type of arrangement) upon becoming adult. The disabled people who stayed at home until their parents died had a much harder time in integrating into another place. They would be much older and have to learn new skills which was harder.

    (I know you’ve mentioned Gavin’s fragile health and I don’t remember if his life span was going to be shortened by it. But anyway, I just thought I’d give you food for thought.)

    1. I don’t disagree Becky. One of the challenges is his health, which for the most part, has been pretty stable recently. The other thing that makes this hard is that we would be doing this against his will. He doesn’t want to leave. I’m aware that it would ultimately be better for us but I don’t know what that would do to him. There’s also a shortage of decent facilities. As for his lifespan, that’s an unknown factor. There have been times when his health was so bad that we were prepared for the worst. Every autonomic crisis could be fatal. He’s not had anything major in a few years but that doesn’t mean anything. We very tightly control things and follow a strict, doctor-ordered routine that seems to have helped. If we loosen up or make changes, we don’t know if that will cause problems. It’s a very difficult thing to navigate and I don’t know what to do. The therapist thinks it’s best for the rest of us to get Gavin into a group home but good ones are hard to find.

    • Kim on July 30, 2019 at 5:06 pm
    • Reply

    Are there no day programs that he could join? He might be just as crazy as you are. He is in that house 7 days a week with no real break and not much interaction outside of you and Lizze. Breaks would probably do a world of good for everyone involved.

    1. I agree with this idea. If he was out during the day he could get new experiences and it might burn off some excess energy, and he might be a bit calmer at home. (Maybe not.)

      I know the direct care place I almost worked at had their disabled people in groups, and they did lots of activities. They cooked, they went out and shopped, they went to visit animals at a shelter, there would be crafts etc. At that place there was a mix of disabilities in each group.

      The bus actually went to their homes and picked them up and brought them back. You would think there would be something like this near you all that might be covered by Gavin’s health insurance?

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