Help! I have a wonderful, smart, handsome husband who has HD. His entire family, on his father's side, have all had and died from HD. His only sibling died 5 years ago at the age of 58 from "complications of HD". We have been married only 2 1/2 years. I have three grown children and 7 grandchildren. He has 3 children, 15,12 and 6. Yes, he was a "late bloomer" as he likes to say. He and his ex-wife divocred after 16 years of married and her being diagnosed with Bipolar disease. She was neglecting the children and finally just broke down. He told her they both couldn't have mental illnesses. So here we are, I am now raising his three children who spent the majority of their lives with a disfunctional mom. As of late his symptoms are getting much more pronounced. The gait, irritability, forgetfulness, etc. He'll swere he has told me or his employees something that he has not. He accusses me of being stupid and tells me I need the medicine not him. He is being treated by a pyschitrist for ADHD, but the Adderral just makes everything worse and he will not discuss HD with the doc. Said it's none of her business. I get phone calls from his secretary (who knows what's up) that the staff are all leaving, but he doesn't see it as his problem. He has a negative comment about any and everyone who leaves. I am so frustrated at this point. I am considering an intervention with his closest friend to just get him to recognize what's going on. I feel like a babysitter, not a wife. I truly love this man and would do anything for him, however, I don't know what I should do. I can't go to a support group here in town because he is too well known here and this is a private matter for now. I don't want pitty, I knew about this before we got married, just hoped we get lucky and have a little more time........

Wow so sorry that you are into this so soon. You will get understanding and support here. Sometimes people with HD really do fail to understand the problems in front of them even with explanations, so intervention may not be the way to go.
Does he have disability insurance? It might be necessary begin from this point to document the problems so it is possible to protect the business and the children. That way he could continue to work awhile but with acknowledgement that decision making might be flawed. It will be easier to go onto Long term disability when needed. First you would have to have a letter from a doctor who understands the disease and have it presented to the company before they get it in their belt to fire him.
Personally I would contact a really knowledgeable neurologist and explain the situation or go to his psychiatrist and explain the disease and the fact that he is resistant and really needs a diagnose. Don't take no for an answer since the disease is probably making your husband not aware of what he is doing. You may have to be persistant. And remember this is a neurological disease not a mental one, it makes a difference in diagnose.
Once people understand the problem I have found that they are more compassionate and helpful even if he is being difficult.

Don't have to worry about his boss. He owns his own company which adds another layer to this. He has people who work for him and depend on his decisions to keep the company going. There are so many issues with this. He is relucktant (sp) to make a will, let me know where and how many bank accounts he has, buy life insurance. We don't have a formal diagnosis as he knows what will happen as soon as he gets one. He took care of his sister while she was alive and he knows how everything changes after the HD diagnosis. Thanks you so much for the reply. I have scheduled an appointment for me with a counselor. I finally realized today that this is so much bigger than me and that I can't do this alone.

DH was also treated for ADHD and has Huntington's. He had stopped ADHD treatment a few yerars before developing HD symptoms. He did try going back on Concerta after being diagnosed and, yes, it didn't help and made his HD symptoms worse. When anger management issues became a problem we tried Abilify. He's been on it for over 2 years now and doing well. He had to quit work however because the stress made his HD symptoms worse. He had begun to yell at people at work and could not concentrate. I wish I had more time but I've got to get to work.

Best Wishes,
Audrey

Does he have an old friend (male) that you could ask to talk to him? I don't think a "tough love" approach would work - rather a quiet explanation of how real HD treatment could improve his life and those of everyone he cares about.

Will

The Best Man at our wedding is older than we are and he values his opinion. That is a great idea. I didn't intend a true intervention. Just wanted me, the best man and one other person to sit and talk with him about what is going on. I absolutely believe that the Adderall is making the HD symptoms worse. He acts more angry and paranoid when he takes it. He says he has to have it to function and that it's the ADHD not the HD that is making him forgetful and unable to focus. He will not discuss the HD with the psychiatrist and will come unglued if I do. He doesn't want anyone to know about it. His employees think he's just being a jackass and unreasonable. I think if they knew it was a disease process causing his actions and not just his personality they would understand and be able to help him more. Thank all of you for your suggestions and replys.

I Loved hearing you say that every thought your husband is just a jackass and unreasonable.

I had a first marriage who turned out to be a pathological liar... divorced him, later met my (unknown) Phd ex husband, Joe.. with his behaivors (and some of my fathers) I thought ALL men were like this and I guess I wasn't going to do any better. THEN I found out Joe had HD! Later I met Steve, THANK GOD ALL men are NOT Jackasses!

That's right folks... you counted THREE marriages here.. this is the last one!

Been a while since I last posted.....hasn't been the best. We will have 2-3 good days and then a long stretch of really bad ones. Had an argument at 0715 this morning while getting ready for work. He told me I was thoughtless. Won't accept an apology, which I seem to do all the time. He never takes the "blame" for any mis-understanding that we have, always my fault. His birthday was yesterday. He is 3 years away from being the same age his sister was when she died from HD and he is no where close to where she was in progression. Some days I want to sit in a corner and cry(today is one of those). I know it won't do any good and he will tell me that I am crazy. I have been a nurse for more than 33 years, but this is the hardest person I've ever cared for. He won't talk about the issues we need to...wills, where his bank accounts are and how many. Sorry, just a bad day

Frightened,
I am so sorry you are having such a hard time.
Really, unless he is willing to sit down and face some hard truths, you can't be of much assistance. Too many people hide HD, much to the detriment of themselves and the family and friends who care for them. (those who stick around).
I agree with Will, have the talk with him and his friend about how there are meds, supplements and lifestyle changes that can have a positive impact on how this disease progresses for him. Let him know that there is often a unawareness of the HD symptoms in the Phd but that others do see the changes.
Ask him if he is willing to lose everything he worked his life for ( his company, his family) because of his poor decision making, irritability, etc.
If he is losing employees, he may also be making business and financial decisions that are not sound.
Find a Center of Excellence and talk with the social worker there.
I opt for straight talk with my guys, no BS. I love them, they know I will always try to help them navigate this disease but they must participate in their own wellness too.
You are doing the right thing by seeking counseling for yourself. Take care,

Carla

Carla,
Thanks for the pep-talk. Here's the latest......told me he was going to work on a project for his company with someone at the office on Monday and Tuesday. Okay, no problem. Here is the problem, he didin't come home Monday night. I had not spoken with him since 1030 on Monday morning. His cell phone is turned off. No one at the office knew where he was. Forward to Tuesday, an employee at his office says that he is with this person. I call the persons wife, they have met at this person's hunting lease and are hunting and working there. No cell phone service and no phone at the lease. They plan on being home tomorrow or the next day. The biggest issue? He did not tell me that this is what he was doing, just went. Left me with HIS three kids which are giving me hell. I know full well that when he comes home he is going to swear that he told me all about his plans. The truth is no he did not, but he will be absolutely convinced that he did and I will once again be accused of causing "drama" and that I'm crazy. How in the world am I going to survive the next years if this just gets worse from here? It's very hard to be told your crazy when I know and remember the conversation and he's the ones whose got the facts mixed up. I know I sound like a coward, I'm not. Just trying to keep myself together so that I can keep the family together.

Hi Carla, wow you really are in the middle of a rock and a hard place.
You might benefit from sitting down with a psychiatrist who can direct you as to how to proceed. A councelor may not understand what is happening to his brain. Sounds like he is not doing any of this purposely but dosen't really get why it bothers you so much. I can tell you screaming and fighting will do nothing.
I wouldn't try to tackle this alone. Maybe after awhile you can persuade him to come with you to 'help you! with some issues' Sometimes they will listen more closely to others and with the help of a specialist he might get it for a while that his behavior is not acceptable. You really don't have to bring up the HD just say it's marital problems to your husband for now.

I'm sorry to hear that you are going through all of this. Birdie has some great advice. You will need support since it sounds as if you're experiencing a form of mental abuse...but he probably isn't doing it intentionally. In the meantime, I would get a white board or some sort of message writing center and have a schedule written on it for each day. Tell him to write it down. If it's not written down, then it will show that he didn't tell you!

WOW reading this is scarey - my boyfriend does the same things with me. We have been together 3 years. Somedays I feel like I am going crazy. At least I know it is the disease doing these things. I love him unconditionally.

My mom does the same thing. She attacks me all the time for stupid stuff, or stuff she did, or that she says I said but I didn't.

I'm sorry you're going through this. (hug)

A

I live alone. Reading this helps me. My memory is shot!

This has been one of the bad weeks. I am stupid and inconsidered and unreliable this week. I totally understand the wanting to sit in a corner and cry.This disease takes a toll on everyone around it. I will never be the same again.