CAREGIVING: Happy New Years Eve, so far. I just joined an online Huntington’s Disease Caregiving support group and a post from one of the members brought back a lot of memories about life with a pHD (that’s our code for “person with Huntington’s Disease”).
“I seldom post, but have been a member for several years. I do read most everything. I am tired and exhausted. This man is turning into someone I do not know or even like much of the time. I think this must be the anger stage as he verbally pounds me to death about one thing then another, most of which makes no earthly sense to a sane person. And I have years of this ahead of me?”
One thing they always tell me at the support group I go to is “Once you have seen one person with HD… you have seen one person with HD.” In other words, even though there are similarities, each case is unique.
Kathy went through that anger stage but unless someone brings it up I honestly forget about it. Too busy for one thing / Aging brain cells for another. During those years she was quite mean, abusive and pretty irrational about some things. When I wanted to go to my mom’s 90th birthday she threw one of my shoes at me (size 11). When I brought up HD one time she grabbed a little Statue of Liberty souvenir we had, and cut my lip with it. We were going to couples therapy for well over ten years and she refused to talk about HD. She started yelling at me in the grocery store one time because we couldn’t buy everything she wanted. At a family reunion she started screaming at her sisters. When I stained and sealed the deck, the paint thinner fumes bothered her and she demanded that I give away my collection of vinyl records. Later she tried to force me to sell one of my guitars.
Like I said, it’s still there in me but I always knew it was the disease not the person.
Everyone including our therapist suggested meds as a way to put a floor on her feelings. I was already on Paxil and thought about slipping mine into her food. I never did that, but I did try some of the herbal stuff like St. Johns Wort and 5htp in her meals. None of that worked of course. Unless someone wants to work at it, nothing will happen. She was also drinking a lot of wine. I would buy non-alcoholic chardonnay and dilute her wine with it. Sometimes I added water to it. At some point she just stopped drinking.
Around that time she just decided to stop being angry. That at least is what she said. It was too much work. She agreed to ask her primary care doc for an antidepressant at her next annual physical. As the exam was finishing up her doctor asked her assistant to schedule Kathy for a neurologist consult, to “check for Huntington’s Disease.” That was a total surprise. I didn’t know it was coming then. (It took six months to get an appointment, but that is another story.)
From then on life, and our relationship, got better. The meds helped with her anxiety and depression. She reconciled with my mom and family and her own siblings. We had a number of great years before the disease really kicked in. Now she is loving and almost childlike. I’m glad to have that decade or so behind me. Friends will always say “Take care of yourself!” even though they can’t know what is really going on. It is good advice even if overused. My only other bit of wisdom is “when walking on eggshells, know when to duck.”
Your mileage may vary.