A Former Huntington’s Caregiver Shares Her Best Caregiving Tips

A Former Huntington’s Caregiver Shares Her Best Caregiving Tips
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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.

***

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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Carlos is a journalist in the Midwest, who through the grace of God has been blessed with a brilliant, beautiful, and courageous wife and daughter. His wife found out she was gene-positive for Huntington’s Disease (HD) at the age of 41, while his daughter found out she was gene-positive for HD when she was 22. Carlos’s aim in writing column is to offer a caregiver’s perspective while also trying to inspire those families who are dealing with Huntington’s. He loves to evangelize, read, play soccer, and share — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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6 comments

  1. Lolita Cox says:

    My son who is 35 inherited Huntington’s disease from his father who inherited it from his mother. His grandmother had chorea, difficulty talking, walking, and eating. I was told that if you inherit Huntington’s from your father your systems are worse. My son so far still have good motor skills and can eat on his own. His father is having worse systems then his mother did.

    • Carlos Briceño says:

      I’m so sorry to hear that your son has HD and that he got it from his dad who got it from his mom. I am glad to hear that your son has good motor skills so far, but so sorry to hear that his dad is having worse symptoms. My prayers are with you all.

  2. Don Valentine says:

    I have Huntingtons disease and 79 my wieght is 148 male and 6`4″ should be 175lbs felt starving and weak all the time. This morning as I was leaving I LOOKED UP and saw 3 golden eagles high and circling over my head if GOD was watching over me, but at same several buzzards at lower levals were circling as well. not an apparition. 1 was so very high and 2 much lower. you could easaly see their white faces and tail. WOW. i KNOW MY TIME IS NEAR AND FELT GOD WAS WATCHING OVER ME BUT SO WAS SATAN. I just needed some practical hwlp on healthy drinks and foods for HD STARVING PERSON. GOD BLESS AND MANY THANKS FROM WILLIAMSBURG VA!

    • Carlos Briceño says:

      I feel for you. Huntington’s is such a terrible disease and to know how much you are suffering from it makes my heart break from you. I’m so sorry to hear of your weight loss. Please know that you are in our prayers.

  3. Rank says:

    My husband has HD and it’s so difficult to get the right care for him. It makes me worry a lot. He has difficulty with his gait and memory. Frequent falls and inability to get up unaided making him pass urine a lot.

    • Carlos Briceño says:

      I am so sorry to hear of the decline in your husband’s health. I understand your worries. You all will be in my prayers.

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