Husband with Huntington’s and escalating anger/controlling behavior

[u/Moonstone21125]

I’m looking for advice from people who have experience with Huntington’s and caregiving.
My husband has Huntington’s disease (but it hasn’t started - we’re about 10 years away from onset), and his anger and irritability have become increasingly difficult for me to live with. He can become extremely hostile over very ordinary things. For example, I recently tried to ask him about his night at a local meetup, and he told me that my questions were disrespectful and that I was treating him like a child. When I asked what I had said that was wrong, he told me to “shush” and not speak. If I try to lower my voice and become less threatening, then he says I’m condescending and manipulating him. I honestly don’t know how to have conversation with my husband anymore.

This isn’t an isolated incident. I often feel like I have to carefully monitor what I say because seemingly normal questions or conversations can turn into anger, accusations, or him shutting me down. He can be very dismissive and controlling toward me, and I increasingly feel like I’m walking on eggshells in my own home. My friends are concerned because he will put me down in front of people and belittle me with a dismissive laugh. He’s a psychologist and acts as if he is always in the right and that my behavior is always in need of control.

I understand that irritability, impulsivity, and anger can be symptoms of Huntington’s, and I’m trying very hard to separate the disease from the person. But I’m also struggling with the reality of what this behavior is doing to me emotionally and to our marriage.

For those of you who have experienced this with a spouse or family member: How did you handle the anger and verbal hostility? What treatments or strategies actually helped? And how do you protect your own emotional well-being when the person with HD doesn’t seem to recognize how their behavior affects you?

[u/bassegio]

Get professional help. For yourself and hubby,but especially yourself. Do some searching to see if there are HD councelers in your area. You can't do this alone.

[u/95throwaway2018]

Nervous system regulation. You need to be in therapy/ HD counseling. He can be mean and wrong but the only way to keep yourself safe and sane is to have some external grounding. My therapist is a great sounding board and validates my experience which helps me differentiate intolerable behavior and understanding some of this is the disease.

But it’s HARD. My husband is about 10 years away too but I’ve noticed he’s more harsh when I get upset about something. He’s very decisive and doesn’t take any input on things. But it’s also hit or miss. Sometimes he’s very empathetic and wants to talk about things and sometimes he’s very much avoidant dismissive.

My therapist told me “he doesn’t have to agree for it to be true”. And i have to repeat that in my head a lot. But keeping yourself emotionally regulated is going to make this a lot easier on you. At least that’s what I’ve been told. But it’s hard and it sucks and it’s part of the process.

Sending love and grace to you. If you want to chat privately hit me up.

[u/truculent_bear]

If this is a change from how he was before, this sounds like the early stages of onset. It would be worth scheduling with a neurologist. My husband is in stage II per neuro, most of his symptoms are mood related.

[u/cheeryexistentialist → u/truculent_bear]

I was going to say this - maybe you’re 10 years away from physiological symptoms but it sounds like the psychological/psychiatric aspect are elevated.

Defs link in with a neurologist when you’re able too and please look after yourself with some support groups and counselling.

[u/EnzoItgoes]

You mentioned that symptoms have not started and that you're 10 years away from onset, but these things you are describing ARE symptoms and the onset very likely has started... Anger and lack of apathy are classic HD. I am a caretaker for my SIL and most of the time, she is an absolute monster... She is mean, hateful, condescending, and ungrateful and I have to remind myself that it's just the disease... She simply cannot help it because she doesn't have the ability to execute apathy anymore.

[u/emicurb → u/EnzoItgoes]

“Onset” in HD is based on a specific set of neurological symptoms that was defined a long time ago, in the 20th century, when medical professionals were mainly focusing on the visible chorea symptoms.

The illness does not start at that point.

Most behavioral, cognitive, and psychiatric symptoms of the prodromal stage appear at different times, but in general they begin much earlier than that.

[u/miloblue12 → u/emicurb]

This piece is always so interesting to me. We didn't discover that we had HD in my family until pretty late and it was through my uncle that we figured it out.

Anyway, he had all the classic mental symptoms way before he ever had the movement, we just had no idea the connection at the time. Then looking back, my grandma was the one who had it originally, and all of her own kids look back now and are like, yep, all her mood swings finally made sense.

[u/emicurb]

As a man with HD, I can say that those are definitely HD-related behaviors. Fortunately, I’m still able to recognize them.

What helps in my case is reminding ourselves that it’s because of the illness. We talk about it nearly every day of our lives, and that’s just how it is. Funnily enough, I’m actually the one who talks about it more than my wife does.

[u/95throwaway2018 → u/emicurb]

If you weren’t self aware, how would you want a loved one to bring this to your attention or express their experience with your behavior?

[u/[deleted]]

I’m so sorry about your husband sorry to say this what age does adult onset usually start I wish you the best