Caregiving for someone with Huntington's disease (HD) can be emotionally and physically demanding. It can require patience, compassion, and a deep commitment to supporting your loved one.
HD patient, Sarah Foster, shares “a day in the life” of her husband and his caregiving routine, including how Randy practices self-care and prevents burnout, despite his busy schedule.
But, most of all, Sarah reflects on the bond that's survived every challenge HD's posed so far. Love and care have the remarkable ability to overcome hardships, providing strength, support, and hope when needed the most.
When one half of a couple lives with a chronic condition, most of the attention is directed toward the person with the illness. He’s simply my husband. Huntington’s disease has not yet required that I receive residential care. But as my symptoms worsen, I know more and more will be asked of Randy.
My husband’s morning routine with me and HD
Randy is already showered, shaved, and dressed by the time I get up.
"Sleep okay?" he asks, and it’s not just a polite greeting. It’s a genuine request to know how many times I woke up or if, thanks to HD-related insomnia, I even went to sleep at all.
"I watched you sleep from one to four-thirty," I say as I plop down on my well-worn place on the living room couch.
He eases me into the day by bringing me breakfast and the beverage of my choice. Even though I am physically able to do it myself, the steps of assembling and combining ingredients both challenge and frustrate me. By meeting me where I am with love, my brain has time to wake up.
We sit across from each other.
“It’s Wednesday,” he says. "I have a meeting starting at four this afternoon, so I won't be back until around six."
I slurp my coffee through a straw.
“What are you doing today?” he asks. He always, always asks me what I plan to do every morning, as he has for years. “Try to move around today, even if it’s only a little.”
But I don’t.
I sit on the couch all day.
After doing laundry, feeding animals, and making the bed, he makes sure I have everything I could possibly need, and then he goes to work for eight to ten hours.
My husband’s evening routine
The day before yesterday, he worked from home and enticed me to sit out on the deck, but most of the time, he has a work commitment he can’t break away from, and I am on my own.
(When Randy is away from home, time slows down. My HD-driven impulsive thoughts and emotions impel me to repeatedly call or text him. Mostly, I want to confirm when he is coming home because I forget. Tracking him on my phone reduces the number of interruptions because I can independently determine whether he is on his way home.)
When Randy gets home, I am, as advertised, still on the couch. We talk about dinner. On good days, I manage to have a pot of soup ready. Most days, he makes dinner, cleans the kitchen, and reminds me of my evening routine.
Then he takes a hot bath and relaxes for the first time all day. I go straight to bed after dinner. We watch a show on his phone when I'm not emotionally overwrought or stuck on some perseverative loop that requires his support. When I have insomnia, I wake him up throughout the night.
On weekends, Randy buys groceries, pays bills, fixes things, and tries to get me to leave the house. He wants to start the day with a walk, and I don’t. In fact, I postpone it until the light is nearly gone. He usually slips out at twilight so he can get some exercise.
I encourage him to find a HD support group – but Randy doesn’t feel ready
The pace of his life is dizzying, and when I think about everything Randy does for me, it becomes clear that there’s not much time for his own life. While he abundantly supports me emotionally, he somehow has the capacity to care for himself too. I think he deserves his own fount of understanding and support.
I have suggested HD support groups as a way for him to connect with others. Every time, Randy says he would feel disloyal if he vented about me. He says he’s not ready to lean on other people.
Instead, he relies on intuition and communication with me, and it works most of the time. “Sometimes I bottle it up, and it comes out as anger or an outburst. Sometimes I can’t control it, and I say things I regret,” Randy says.
Don’t we all?
He says that financial support would be more valuable than emotional support. Generally speaking, finances can be an area of need for HD families. It’s certainly true for us. We constantly have medical bills, and Randy is still working full-time while his peers are thinking about retirement. Randy says that resources allowing him to stay home and care for me would be the most practical support.
Randy has noticed that as my life unfolds, I regularly succumb to fogs of depression and confusion, eroding the family's spirit. He says the best thing he can do for the whole family is to help me get through the rough periods.
“It wouldn't be a tolerable place if we were all looking for ways to make ourselves happy, if Sarah didn’t come first.” (I wept when he said this. He’s unselfish to the core.)
But sometimes, our situation becomes overwhelming
There are times when the long hours of work and being on call to address my needs overwhelm Randy. He is just coming to understand these challenges as my disease progresses.
But until he feels comfortable talking to others, there won’t be any “HD Club” or support group for Randy.
I don’t find that reassuring.
He has no place to scream about the hand he has been dealt.
No listener to tell him he has every right to scream.
The ways Randy chooses to cope
Randy enjoys his profession because he can do interesting and different things every day. When life as a caregiver becomes too much, his work serves as an escape, a sanctuary.
Randy also strives to enrich his own life in the following ways:
- He prioritizes his own fitness. Moving around with ease influences his sense of well-being.
- He walks instead of using his car when he works. Walking up and down hills and stairs yields therapeutic results with this routine.
- “I make sure that Sarah is happy and comfortable,” he says. If I am doing well, he feels comfortable leaving me alone with Rupee, my HD service dog.
- He eats right. That means he avoids junk food and doesn't smoke, drink, or take drugs. “Intoxicants are a way of coping, but it damages your body at the same time,” Randy says. He puts the right things in his body and takes care of it.
- He forges activities and relationships outside of the house. He hikes and explores our surroundings with our sons, especially our youngest one, who lives at home. “I get to know my colleagues and coworkers. Sometimes, I spend time with them outside of working hours,” he says. It is hard for him to take the time needed to develop the number of supportive relationships he would ideally have.
- He frames a positive attitude to attain a positive outcome. The reverse is also true. “If you expect a negative outcome, you will get it,” Randy says. He says that continuous evaluation of how he frames things can help him turn a bad day around.
Our conjoined future with HD
Later in the day, Randy will feed me mush with a spoon and straw. As my disease progresses, he will feed me through a tube that bypasses my throat because dysphagia means I’ll struggle to swallow. He will continue to guard me against falls and injuries until I am bedbound. He will bathe me, brush my teeth, and encourage me to do everything I can possibly do, even when few options remain.
I will still be me, but to others, I will no longer seem like a person. I will be a shell. A shell that will be utterly dependent on Randy for care.
He faces the "challenge of me" with profound integrity.
He, unlike so many others, has not walked away.
The love I feel for him is accompanied by a fierce appreciation.
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
NPS-ALL-NP-01031 JUNE 2023