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  • Writer's pictureSharon McClellan Thomason

Stepping Away to Step Up When Huntington’s Disease Is Too Much

Often, I hear the pleas of caregivers saying, “I feel overwhelmed.” “My HD loved one does not qualify.” “I hate my life.” “I want normal.”

Does this sound familiar? The controversial subject of staying/keeping a loved one at home is one that can strike up a fierce, judgmental war, including hateful reprimands from family members without Huntington’s disease. The struggle is real.

📷For my own family, I had to step away so that I could step up. We were at a crossroads in the HD world. I was caring full time for my end stage mother-in-law, still raising our youngest son, and battling my in-denial, prodromal HD spouse. My life seemed like nothing but a nightmare. If this sounds harsh, do not judge me; hear me out.

Feeling all alone is the silent killer of an isolated, uninformed caregiver who is left flailing along, not knowing what is HD, and what is not. Trying to separate the illness from the person is nearly impossible to do when you’re in the thick of it.

At the time all this was going on in my life, I had to make some really hard choices. My beloved HD man was verbally acting out and targeting his own mom and son and . . . me. I had to make the choice to step away. I searched endlessly for a nursing home to take Nana, and I searched for a house to rent for my son and me.

The night we moved out was a nightmare. The police had to be called, or I literally would have been murdered by my HD warrior.

It was ugly.

It was painful.

It was the right thing to do.

Some may think leaving is cowardly. It is actually brave. Moving a loved one into a home or temporarily leaving a still-working person with HD until later can make you a better caregiver!

Yes, you read it right. I stepped away for five years. During that time, my loved one still worked, and I monitored him. I invited him to all family functions and holidays, and I spent lots of time with him, but I got to go home and get away from it. Our son blossomed and grew. I was able to get my son and myself into counseling, and I visited my mother-in-law every weekend, picking up her laundry, doing her nails, and taking her outdoors. My relationship went from bitterness to pure enjoyment. I looked forward to being with both my man and Nana.

If your own mental health is suffering as a caregiver, if you are feeling resentful, hateful, scared, and📷you are having trouble coping, think about doing this temporarily to get back on track. It does not have to be permanent, maybe just a week’s vacation without them. Maybe a temporary separation, maybe a divorce on paper to help them qualify for more care, with you remaining a caregiver, maybe a nursing home near you. These are things to ponder. I am not an advocate of divorce or abandonment. I am not saying cut and run. What I am saying is sometimes you can become the best caregiver in the world by putting some space between you and your loved one with HD.

Step away to step up. If you are not making a point of letting yourself have time to heal, you may end up being neglectful and resentful and suicidal. YOU will lose you. Your loved one will suffer because he or she needs love and support, and if you resent your loved one, he or she knows it.

Oxygen is a good thing. It supports life. Give yourself time to breathe.

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1 Comment

Sharon Douglas
Sharon Douglas
Dec 22, 2021

My husband was diagnosed with early stage Alzheimer’s and early stage Huntington's disease. He is aware of what is going on some of the time but he refuses to bathe or do any of the things the doctors tell him. He could hardly get around because all he does is sit in front of the TV all day. He refuses to go for a walk or to a senior center and he refuses to bathe. I was beside myself as we cannot go anywhere when he is dirty and stinks. I didn’t know what to do, I could not physically overpower him and make him do things and when I ask him he tells me I am not his boss.…

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