The Story of a Caregiver

I always thought Mike was the luckiest person in the world. Even though he had been fired from every job he had, he kept getting hired for good, solid jobs. Not long after I moved in with him, he lost his then-current job with not much of a buffer. I recommended temping while looking for something permanent. He was working a particularly bad placement when he got the call his mom was fading. She had MS, and hadn’t been doing well for a while. When she passed (OK, admittedly not lucky) he found out she left him a significant amount of money. He immediately quit the rotten temp job and didn’t look back. He didn’t work again for over 10 years. He stayed busy – volunteered for animal rescues and raised homeless puppies until they found a home, bought a motorcycle and drove around, put way too much money into buying new appliances for our rental house. And played a lot of video games and drank beer. I don’t know if I mentioned it before, but he was a heavy drinker before the seizures.

So, after 10 years of buying motorcycles and an expensive car, TVs and video games and building a fancy gaming computer, he was finally running out of money. Then, out of nowhere, his dad decided to give each of his three kids $25k in stocks. Not much later, he did it again. It took about 12 years before he finally started working again, and it was something he enjoyed. It was a few months later that the seizures started that lead to a diagnosis of a rare brain tumor that had a very low survivability rate. Not only does he have GBM, but the markers are of the worst kind. We’re in Facebook groups with others with GBM who have lived many years, but they were able to have surgery and had the type of cancer that responded well to chemo. The type of GBM Mike has has a survivability rate of about one year. He was diagnosed about 51 weeks ago.

So what the fuck? He gets things handed to him his whole life and then this? Is this some god’s idea of karma? I think I’d rather have a mediocre life of working through OK jobs and just being able to pay bills than to have independent wealth followed by a death sentence.

I wonder if he thinks about this. I’m not event sure he’s capable of abstract thought at this point. I was finally taking down the Christmas tree, and he commented that this would be our first Christmas in the condo. I told him we already had Christmas, and he emphatically said no we didn’t. I explained it was February and I was taking down the tree, not putting it up. He thought for a long time and looked at his “Dementia Clock” (that’s really what it’s called) and saw the date. I think he was a little sad, and then said oh yeah.

It really hurts to see him decompensating. Every day, all day really, he has moments of losing the date, forgetting we did something, or losing his train of thought. I really wish I could understand how his brain works.

On a positive note, he’s not exhibiting symptoms that Dr Cohen mentioned would be signs of the end. Mike’s still hopeful he can work hard and walk without a walker again. I try to support him without letting him endanger himself. I just want him to be happy. I wish I knew how to do that. Suggestions are welcome.