I fear my wife worries I won’t be a good Huntington’s caregiver
All I can do is continue to work on being more careful
I came home one night recently to find my wife, Jill, sitting on the floor in the dark at the edge of the stairs. She was clearly upset and in pain. I was worried something was broken so I asked if I needed to call 911. Through her sobs, she said no.
“What happened?” I asked while turning on the light and offering a hand to help her up.
She smacked my hand away, which is very uncharacteristic for her, clearly indicating that she didn’t want my help. She stood up and walked gingerly to a nearby chair. As she sat down, I could see her pain was replaced by red-hot anger.
A thought flashed through my mind. Was this a symptom of her Huntington’s disease rearing its ugly head again? Because she is gene-positive for Huntington’s, Jill has been exhibiting some of its symptoms — chorea, anxiety, depression, feelings of being overwhelmed, and losing her balance at times.
Instead of answering, she pointed to the wall. I realized what had happened and what she was showing me: an empty space on the wall where a light had been.
Taking care to be a better caregiver
Jill is very patient with me. I’m not as organized as she is. I don’t always listen to what she is saying, and much of the time, I do things without thinking about the consequences. I believe it’s a result of having attention-deficit/hyperactivity disorder.
The light switches in our home are not located in ideal places, and I have a bad habit of turning them off if they’ve been left on for awhile, not realizing Jill wants the light on to go down the stairs.
Recently, she bought rechargeable indoor motion detection lights. We mounted them at various locations to help make her feel safe.
But there was no motion light where she was pointing. Just an empty space.
The light was gone because I had removed it to charge it and had forgotten to replace it with one of the extras she had bought. Jill had asked me not to take the rechargeable lights off the wall because she said she would handle recharging them, making my crime even worse.
“The light was gone for several days,” I said, stupidly pointing out that she hadn’t noticed it had been missing before.
She didn’t talk for the rest of the evening. I apologized, but I think she is worried that her illness is causing her patience for me to wear thin. And I fear she is worried I won’t be able to take care of her when she needs it the most.
All I can do is continue to work on trying to be less forgetful and more careful when it comes to her safety at home and hope she sees I do want to be the best husband she needs to take care of her.
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