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.
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.
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Comments
Nicholas Logiacco
Dear Carlos,I would like to share my story with you.hunting’s is a horrible disease. Back in 2006, finding out my wife had it after a lot of testing and visits to neurologist .ino one could understand what was going on.the mood swings .angar,depression forgetting things falling the list goes on. The ammonias .eventually feeding tube . To going to Mexico for stem cells,so much more I would like to tell you .I learned so much how to care for my wife things I never knew I could do for her .i loved my wife so much and was always by her side.jan 8 2021,she passed 3 years now I am still hurting and miss her so much.she was the most important in my life i would never put her away I kept her with me . I slept on a daybed by her hospital bed in our house I woke up all the time doing suction with machine to prevent choking every hour checking to see if needed to be changed. I kept her clean and safe never a bed sore.everyone knew it he care I gave her ,no matter what you do and how much, you’ll always wish there could have. been more🙏😇❤️
Vic Aul
Hi Carlos,
Thank you for sharing your story and struggles with being a caregiver to your wife with HD. I am sorry you are both going through this. It sounds as if you are doing your best.
I am also a caregiver to my wife with HD and I have ADHD as well.
We are staying ahead of the disease in several ways and decided to automate our home as an example. We have lights connected to Alexa. My wife is able to turn them off and on as needed. Alexa can also inform me if she needs help by simply asking Alexa to call me.
If I forget something, I just set a reminder with Alexa. Alexa will verbally remind me of the task and also text my phone to remind me.
It has taken time but I have learned to stay calm, listen and forgive myself.
Emme
I also have a husband tested positive for HD!
And thus disease is awful, he is in stagec3 and my life has changed drastically..I pray you have alot of patience, because if you don't this disease will also put a damper on your life..if you ever need someone to talk to.
Newell D. Anderson
My wife Margaret has had active HD > 20years! At active onset she was completely off the rails! We went through 3-4 psychiatric hospitals in 2 years!! Chance finally brought us to a Real Psychiatrist who treated the patient as opposed over medicate & institutionalize! Your wife stated concern may indicate the need for a Psychiatrist now!!
HD Neurology Doctors tend to skim over the Psychiatric component of the malady!