On Death and Living 6.7.18

It's strange because we both feel alone. It's like being stranded on the same island at opposite ends. Sharing this experience, but each of us experiencing it very differently. Me, hyperaware of his symptoms, movements, and progression of the illness and he, finding it harder to use the mind he has always solidly leaned on. His ability to figure things out is impaired and I can tell it causes him pain. He has extreme fatigue that keeps him from enjoying his life because he doesn't have enough energy to do the things he likes. I notice some depression symptoms, but I can't imagine anyone not having some. I am going to try increasing our intimacy through small stuff like cuddling and hugs. I realized that we used to touch more and that always provide comfort, even just my hand in his.   Yesterday, I finally felt his loneliness and it's just as cold and isolating as my own. He is my best friend. I hate seeing him in pain. 

I will be home full time soon and we will work on his medical care, home care, clinical trials, physical therapy, and daily routine tasks. They say the more routine built into people with HD's day, the better their mental health and well being.  Harry at baseline appears to be a mellow fellow, so I want to try to make that easier.   I say appears" because I always thought so but now that his symptoms are increasing I see a lot more anxiety, than I did before. Not sure if he is just reacting to the illness or if those feelings are just harder to hide now. He is handling this amazingly though.  I know I wouldn't be nearly as together as he has been through this process. Hell, I've more of a mess than he has, and it's not my body being ravaged by illness.  He voluntarily gave up his motorcycle (after the second accident).  He decided to stop driving on his own, which took guts and I know was really hard. He likes being independent. He finally (2 years after his last job), consented to applying for disability. It took a while for him to see he wasn't taking a handout--he was simply getting back what he had already put into the government by working for the last Twenty Five years. It's getting his retirement early, because he won't live to see 65 (or whatever age they've raised it to by then).

I have more supports in place now in 2018.  I have a therapist, anti-depressants (but only take them if you are going to add the other stuff otherwise they aren't as effective),  a solid support system of family and friends, actual tools (yoga, meditation, mindfulness, breathing) to use to manage my own mental health and it's not magic, but it makes it a little better--just enough to make it bearable.. 

On Death and Living. 6.6.18

It's rather ironic that I complained in my last posts about Huntington's blogs that abruptly stop posting----and then fall off the earth myself only to come back SIX years later.
Hey, I've been busy finishing up my education goals and figuring out the living situation. Right now, we are trying to build a bathroom on the first floor of the house. I am about to quit my job as a Social Worker to get Harry's home care in order, figure out his medical wills and all that. I honestly needed the time off to get Harry's diet and therapy regime together and to "recover" from being a social worker. It really is a rewarding job, it just seems like there are dedicated efforts to make it less rewarding from many sides. Sometimes I feel like I am being punished for my care and compassion for others. I like my clients and my co-workers, but I need to focus on home and there is so much to focus on at work. Also, it is a dangerous environment we work in, mixed with addiction and untreated mental illness. People have been killed in the last 3 months and honestly that is the last straw for me. I can handle the reality of bedbugs, body waste hoarding, consistent verbal abuse, potentially dangerous locations, potentially dangerous situations, none of these things are great, but once you start adding in *actual* death, I'm out.


I cannot justify something happening to me, who would care for Harry? He has a great family, but he is my family, my responsibility, and not in a burdenous way, in a "I don't want anyone else to do it," I want to. It hurts like a motherfucker, but I keep holding onto him. I'm afraid to let him go, but keeping him closer rips my heart out.