HD caregiver in training

Greg HD caregiver and Lisa

Greg Compton is the primary caregiver for his wife, Lisa. She has Huntington’s disease.

I don’t see myself as a caregiver, at least not yet.

My wife Lisa’s Huntington’s disease (HD) is still in the relatively early stages—I’d say the first five to 10 years. She has the “piano-playing” (a type of chorea, or irregular, jerking movements) and some cognitive issues, as well as depression, some personality changes and she’s tired all of the time. She’s still able to work, though for how much longer is anyone’s guess. I’m thankful every day she doesn’t come home with all her stuff in a box. I know that day is coming, and that working is all she can handle and then some, but I live one day at a time.

So for now my role is less caregiver and more facilitator; maybe I am a concierge. My job is to make Lisa’s life as easy as possible. “Hi, I’m Greg. How can I help you today?” (Did that sound natural, or a little forced? I’m still in training.)

Lisa's cat Kapu

Lisa’s favorite part of the day is bonding with her cat, Kapu.

Lisa’s mom died of HD, so we know what’s coming and that the heavy lifting is still ahead of us. There are things in life that all of the preparation in the world cannot prepare you for, and this is one of them. So our focus is more immediate. When I say “good morning” to her, I find I mean it more than I used to. Today may be as good as things get, so I need to appreciate it.

I’m a realist with an optimistic bias, so in the past I’ve believed next year will be better than this year. I put my focus on where we were going rather than on where we were, usually at the expense of fully appreciating how good things were—because I was sure they’d get even better. Now I appreciate the good things I have today, because who knows what tomorrow will bring. When Lisa’s playing with our cat, Kapu, before breakfast—her favorite part of the day—her laughter makes me happier than it did before. I’m noticing it now, where I took it for granted before. I don’t take things for granted anymore.

Like many couples, we both have our issues. I’m a dialysis patient and legally blind, which means I still see more than I don’t, I just don’t see detail well. So I can’t read and I can’t drive, which puts running errands back on Lisa. I’ve come up with workarounds for some tasks, and am working on solutions for others. Is it frustrating at times? You betcha. But life has always had its frustrations, and now I try (emphasis on try) to see the absurdity of it all. Like when we leave for church on Sunday and Lisa can’t remember where she parked the car and I can’t see far enough to help. Part of me wants to scream and part of me wants to laugh.

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Sometimes I do scream. I’d like to be perfect, and patient and never get upset, but that’s not me. I don’t think that’s really anybody. The challenge is understanding my best will only be good enough when I allow it to be. I’ll never be perfect. Even when I do my best I’ll feel like I could’ve done better. But I didn’t. All I did was what I could, and I have to accept that is enough.

Lisa and I are Catholic, and our faith has been a tremendous help. I pray a lot, not so much that God might hear me as I might hear Him. We attend Latin Mass, which is more reverent and contemplative than the Mass in English. It really helps recharge our batteries for the upcoming week. At times it can seem like I’m responsible for absolutely everything, so it’s nice to have a reminder that I’m responsible for very little and in control of even less. It’s comforting to know that God has a plan, even if His plan is very different than what my plan would be.

It helps me to think that God has an odd sense of humor. I’ve always had no patience for repeating myself, and now that’s all I do. I’m working on not saying, “I just told you … ” but that’s a work in progress. It agitates Lisa when I point out she’s forgetful, and it doesn’t do me any good to remind myself she’s struggling, either. My new mantra is “let it go,” which is so not me. Like I said, I’m really still in training.

lisa HD

I know that one day the wheels will fall off and when they do, we’ll deal with it. Until then, I treasure the things that mean the most to me: my wonderful wife, our supportive family and friends, living at the beach (which we love) and the little daily blessings that make life worth living. Today is a good day—and today is all that matters.

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