A Former Huntington’s Caregiver Shares Her Best Caregiving Tips

I like learning, especially from smart people. My wife, Jill, is one of the smartest I know. With that in mind, I wanted her wisdom from the years she spent caring for her father, who had Huntington’s disease (HD) and died in 2011.

Following are some of the lessons she learned, which I share to help other HD caregivers:

Don’t argue with crazy

Psychosis is one of Huntington’s symptoms. Like many who deal with HD, Jill’s father distorted reality. Jill told me he thought his hands felt sticky at times.

“I didn’t want to argue with him,” she said. “Telling him his hands weren’t sticky wouldn’t make it so in his mind.”

She decided she would trick him and came up with the following solution: When he complained about “stickiness,” she would present him with several choices of cleansing methods: a bar of soap, facial scrub soap, or a foot-care scrub.

One of them usually helped him believe that the stickiness was gone. If none worked, she told me that in presenting him with the variety of cleansing materials, she had distracted him with enough choices that he forgot that his hands were “sticky.”

But the main point is that she didn’t waste time or energy in arguing with him and making their relationship an adversarial one. Instead, she figured out solutions, which leads me to her next tip.

Don’t tire of coming up with solutions

Jill said that HD presents caregivers with many problems.

“You’re going to come up against a lot,” she said.

What do you do when the person is agitated? (She would distract him with what she would call “shiny objects” — like getting his granddaughter, who was a child at the time, to interact with him.)

What happens when it becomes difficult for the person to eat? (She mashed and made huge pots of sweet potatoes when he had trouble swallowing. The mushiness of the potatoes made it easier for him to swallow the food.)

What happens when the person has difficulty walking? (She would interlock arms with him or move furniture out of his way so that he wouldn’t stumble or bump into anything.)

“You can’t accept the problems, because you are too busy coming up with solutions,” she said.

It’s OK to get frustrated

Seeing someone you love suffer or distort reality causes a lot of pain and frustration in caregivers. Jill suggested you find someone to vent to.

“Love yourself enough to know that you are doing the right thing in taking care of the person, even when it doesn’t feel like it,” she said. “You have to live with yourself after the other person is gone.”

Follow the ‘golden rule’

Treat the person with HD like you would want to be treated.

“When I saw my dad with the disease, I saw my future,” Jill said, referring to the fact that the children of people with HD have a 50% chance of inheriting the condition.

So, Jill, who found out she was gene-positive in 2018, always figured it was probably in her future. She treated her father with a lot of patience and love. I love the golden rule, so I am following it as well.

Ask for help when you need it

When caregivers need help, they should ask for it. Many people don’t ask for assistance out of pride or because they don’t want to bother others.

Some don’t accept help when it’s offered. Jill said it’s not easy to take care of others if you are not getting any help.

“Let them cook you dinner, or if they offer to spend time with the person while you do something, take them up on it,” she said.

Find time for yourself

“Your whole identity can’t be a caregiver,” Jill said.

Easier said than done, of course, but it’s worth it because you are worth it.

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