I'm to the point of having to shut myself in my room.

First I wasn't allowed to eat dinner with him, then talk to him at night, now it's "Don't even come in the room when I'm eating".
He tells a joke or tries to have fun with me, or even accuse me of cheating, and I must respond in a favourable way.
I joke around or try to have fun, it's not only not funny, but it offends him and he'll stay angry for a few days.

There's no talking about the disease, either it's "none of your concern" or "the disease is not that bad".

Do I ask him where he thinks his behaviour is coming from if it isn't the disease?
Why does he dismiss the issue?

Since he won't tell me anything, I need someone to tell me for him!

Does he truly want me to leave him? Does he not have any regard or remorse for the agony he's caused me? Or is that only on his "bad" days?
Does he truly want me to stay but feels guilty for subjecting me to his behaviour?
Personally I think he hates me, truly. I think he may have hallucinogenic visions when he looks at me, like seeing a devil or demon (seriously, no joking around)
One day he'll tell me he's selling the house, but the next day he's planting a new tree.
One day he'll tell me to leave, but the next day he'll buy a new piece of furniture for me.

P.S. How do all of you get yours to get help!? Most of the posts I see here are from people who have tried meds. or sought psychological treatment in some form or other for themselvs or the ones they are caring for.
All he says is "I should die", treatment has no meaning only the industry trying to make money, and he talks about killing himself in the future (that is a whole other topic in itself).

I am so sorry both of you are in this situation. I can't offer any advice since I have nothing to really base it on. Do know that we are listening to you and you are not alone.

Mike

You need to get a professional opinion on this esp with the mention of suicide. I'm so sorry that you are having to deal with such a confusing situation. I'm praying for you. Please keep me updated.

It is very hard and I can tell you I have been in your shoes and it is so very confusing to your self esteem and it not only makes the people with the disease different, it causes the caregivers and loved ones to HAVE to be different. It is a brain disease and effects EVERY aspect-physical, emotional and mental. I assure you he doesn't want you to leave him. His brain disorder wants you to leave him, but he will get to the point with this that he CAN NOT do without you. He probably knows that deep inside, but getting it from the brain to the other parts is the problem with this crappy disease. What I have found is that when they are acting like that they truly are not looking at the same picture we are. He totally thinks he is acting appropriate and can't see it any other way. My husband has gotten so much better on meds, but I remember the "this is none of your business" conversation. I remember the "this isn't about YOU" conversation, I remember the "YOU'RE the one with the problem", "you need meds, not me". Then the next day is totally flipped and we just go about our business like none of that happened.
I have learned to pick a spot on the wall (when he goes off) and just stare at it like it is HD and I am getting ready to beat the shit out of it for causing this! Then I quietly leave the room. Sometimes I just go to another room, other times I just get in the car and drive or take the dogs for a walk. Pretty much pray wherever.
Then when I come back I just have to focus on pretending it never happened, because that's where his brain is at and to harp on it and for me to hang on to it is only hurting me. He's over it and it's a new moment.
It's not easy to get to that point and know that your life and relationship will NEVER be the same when this cruel disease sucker punches.

If you can't get him to go to therapy or go on medications, you can't control that for now, but YOU CAN GET yourself to therapy and get on some meds that can help you cope with the grief that goes along with losing someone who is standing right next to you. That is what is happening, we are losing them a little at a time.

Hope you can find the help YOU need to help you cope with him NOT getting the help he needs.

Vicky

Wow, thank you everyone for letting me know you are listening...it IS very lonely. AND confusing!

And Vicky, appreciation for your description - haha! Beating the shit out of HD - I wish we could literally!
Everything you say is true about my situation, and I really needed to hear it from someone else. The voices in my head talk too much! I guess deep down I know that too - he doesn't want me to leave, but I confuse so easily when he says I should, on both his good days and bad.

I can't talk to friends or family about problems, not all know about the disease and just can't understand why I stay with someone who does such strange things (not even telling them the bitter details).

Suicide, well, that's on an almost daily basis. He doesn't believe in making mistakes, if he does, he "should die".
Treatment - his only answer to my suggesting going to a doctor is "it can't be helped, they'll just tell me what I already know - I have an incurable disease". And "suicide is my choice and my right".
So what about me? You know you hurt me and you know I'm trying to help you and make you happy..."you should leave"
Pregnancy - I even asked him what I should do if I'm pregnant (because we have been trying) and he says it doesn't matter, it doesn't involve him!

But on his good days he remembers my suggestions and says I'm so smart and Oh - that would help, great, and he seems so motivated. The littlest thing can destroy that hope.

I know he feels bad...he's like Jekyll and Hyde, and I believe he knows it too. Yet, there is NO effort, none, not even consideration to get help, but I know it would do both of us good; I am DETERMINED not to let the disease win while all he does is give in to it

On one of the "good days" try to explain to him that he's absolutely right about incurable disease part, that is true about HD but there are medications that can help with the symptoms that could make things a little better for the both of you.
One of the first symptoms of the onset of HD is a disregard for other people's feelings, he has that! Parts of that wont get better with meds or therapy unfortunately. So you have to decide if you really want to bring a baby into that mix. If you aren't already pregnant, i would urge you to really consider the reality of trying to get pregnant and the risks in passing on this genetic disease.
I do not know your situation, are you legally bound (married) to him? That makes a bit of difference when he starts making decisions about selling your home, providing for a child, and many other legal and medical issues.
I understand your urge to be a mom. I am not trying to squash that for you. We tried for years to have a child (we didn't know about his HD status) i have 3 step sons. But as It turned out, I was unable to get pregnant due to endometriosis. I struggled with that emotionally, but I can see now that God knew what my future looked like, caring for him and statistically one or more of my stepsons.
It isn't fair, iI get that. I understand you more than you know! None of us would be on this site if we didn't need each other! Whether it be support, reassurance, advice, knowledge, prayer. Whatever you need, there is an abundance of all of those things here! You are not alone and we all inderstand where you are at.

Hey, actually, he doesn't know he's like jeckel and hide. Many people with hd have no recognition of their symptoms, because the part of the brain that does self awareness is also dying. I'm fortunate my doctors have told me that I am very self aware, and they having self awareness is very rare with hd.
I was aware of the emotional turmoil I was in, and was able to get on to some very good meds, that made an instant difference with not only my moods, but also how I was interacting with people.
I can tell you that he Does need meds, and right away, and actually, he has no choice in the matter now. You have written the solution to the problem right in your post. He says he is suicidal. The next time he says it, call 911, and the hospital will have to admit him, and they will put him on meds, he will have no choice.

Barb - Thank you for the push, although it's all so very scary.

Also, interesting what you say about self-awareness. With him I'm not so sure he is unaware. I could be wrong. On a good/ calm day, he remembers being angry on that bad/ angry day. He remembers why he was angry, what he said, that it is still my fault, I am still stupid, etc. All of this on his good days while he's saying and doing nice things for me!

What type of "emotional turmoil" are you referring to...anger, or depression, or both? What kind of meds did you find that helped?

An update, well, we were on talking terms, actually had a good day. I had left him alone for a time and it was just what he needed. Yet, not two days later, he's calling me stupid again, of course I get defensive, and the cycle starts all over.
What am I supposed to do!? It's not only that it hurts my feelings. Putting my feelings aside and remembering the disease, I don't want him to have to stay with someone he thinks is stupid but will take care of him! In my eyes...that is using me...and he's doing it conciously.

This is where I struggle. He claims his life is complete and he is happy to have me, yet I'm stupid and don't know anything. Seems too that he doesn't like anything about me. He actually told me one "good" day that he loves me because I take care of him! And that if it were me with the disease (when we initially found out) he would leave me!

Huh - and I feel so stupid now for writing this even. Allow me to rant thanks for listening.

You said: On a good/ calm day, he remembers being angry on that bad/ angry day. He remembers why he was angry, what he said, that it is still my fault, I am still stupid, etc. All of this on his good days while he's saying and doing nice things for me!

You are not getting it. If he was just say a guy with a bad temper, the next day he would be kissing your but AND SAYING HOW WRONG HE WAS. He is not, even the next day saying how wrong he is, because cognitively he cannot negotiate that he was wrong, period. It is not him, it IS the hd, and he needs to be in the hospital because you've said he's suicidal, and he needs the hospital to put him on a mood stabilizer and anything else that he needs to help him. You need to not overthink this. He says suicide, you call 911 period.

An afterthought...this also sounds a bit emotionally abusive, and you are probably in a pattern of when he gets out of control, or suicidal, of you taking the roll of oh you poor baby, how high should I jump to make you feel happy. That's a pattern you have to break. When he is out of control, you have to teach him something, by you calling 911, it will not only get him the help he needs, but he will learn from that that he can't use his moods to manipulate you. By you calling 911, it tells him that he can't play your emotions, instead he will have to ask how high he has to jump to be able to come home. And the answer is simple. Someone, especially someone with hd, needs boundaries, that they are told they cannot cross. He needs to know, that in order for him to be at home with you, he has to do whatever it takes to not cross those boundaries, or he will again not be at home with you. He needs to know that in order for you to be there for him, and take care of him, he needs to do his part, get the right meds, and not cross whatever boundaries you set in place. You just need to go from being the victim to being the one in control, and you owe that to him and to yourself, you've obligated to do this

What you wrote was very good, Barb.

I agree with Barb on calling 911. For a long time my husband was out of control, completely unable to let things go, sometimes staying up half the night obsessing over where he felt he was wronged. According to him, my son and I were idiots and it was us that needed counseling because there was nothing wrong with him. At night, he would burst into the bedroom, wake me up, rant for a few minutes, then leave. As soon as I fell back asleep, he would burst into the room again, going on and on about the same thing. I wasn't getting any sleep and at my breaking point. I had to leave for a few weeks to get away from him for my own sanity and to catch up on sleep.

He had violent outbursts and once he got physical with me, so I called 911 and the police came. I was lucky that the officer was familiar with the behaviors of HD and called the paramedics. At the hospital, the doctors told him that if he didn't get his behaviors under control, that they would have to put him in a nursing home. The next day, his neurologist told him the same thing. I think it finally sunk in at that point. Dr changed his meds so that now he's on a combo of Seroquel, Risperidone, Klonopin, and Effexor. It seemed to do the trick. He's much calmer and not verbally abusive to me anymore. He's is very schedule oriented and still gets agitated when things don't go as planned, but as long as he feels like he still has some control, we do OK.

It's definitely not a picnic, but lately we've both been feeling better. I have my faith and family that loves us, and for now, that's enough. I pray that you find some peace in your life and that your husband gets the meds he needs to get his emotions under control.

Hi Jennie1977.

Your story has similarities to mine. My husband has HD and I am very familiar with his HD behaviours. The behaviours started shortly after we were married and they can be very challenging to handle as a caregiver. The sweet man that I met and loved was changing. The man I fell in love with was sweet, kind, loving, generous, head working, valued friends and family etc. His huntington's has created a polar opposite.

I was in my 20's when this disease started to present itself. By the time I was 28 I became the sole financial supporter as he was unable to work. I was constantly grieving (and still am) losses. Both his losses and mine. Choosing to stay with him meant that I had to alter my plans, my hopes, my dreams.

My husband would yell, insult, accuse, steal ......... His behaviours were intense. One time he stole tools from my dad, convinced a home care worker to take him to pawn them, lied about what happened for weeks. Then one day he woke up and said that "He needed to tell me something and told me the truth that he had sold them." He wasn't aware that his actions were wrong or inappropriate but once in a while there would be a glimpse of a man who was. Very confusing when you are a caregiver. There is no awareness now. He doesn't know that what he does is wrong or hurtful. My needs do not factor into the equation.

In the beginning symptoms happened sporadically which made it more challenging for me. But as the disease would progress I would see things more frequently and even more intensely. For me learning about the disease and it's symptoms, learning how to handle the behaviours and how to minimize risks was very important and helpful. He couldn't control the HD so that meant I had to control me - my reactions, my knowledge and understanding, learning how to help him, reducing triggers etc.


It's hard not to take the actions and insults personally but it's necessary in order to handle what this disease throws us.

If I can do anything more to help you let me know.

Lisa

I am very glad that I wrote when I did because things just seem to be getting worse.
When I think everything is fine, it isn't.
At first I felt selfish or needy by writing this post, but what all of you wrote is extremely helpful, not only to me but to many other caregivers/ spouses/ family members who are not so familiar with this disease yet.

Barb, I can't express my appreciation for what you've taught here. He DOES need a mood stablizer for sure, perhaps anti-depressant as well. And yes - he is manipulating me and playing with my emotions, and knowing I let him get away with it. I needed to hear this. I was enabling him before because I was scared to make him mad.
I was also weary about setting boundaries, as you say, because I compared it to wanting what you can't have; to children we say "Don't touch" and they touch; to adults trying to break a habit, they often do it more because it's all they think about. I thought that if I told him what might be unhealthy for him, or the things that bothered me the most, he would do them more frequently.
He did tell me that when he was a kid (and I see it now even he's a grown man) his mother gave him so much, never said "No", because perhaps she was afraid something might happen to him as with his grandmother and father.

Now I feel I could have more confidence with standing up for myself, hearing it from you. I knew I obviously wasn't doing anything that worked, and felt I should be doing more, or just something else different. Thank you.

djcloc, how were things after you would return from leaving for a few weeks? Would you have contact during those times?

Lisa, wow, to be so young and have all of this thrown at you. You are tough. And I really like that line...
" He couldn't control the HD so that meant I had to control me "

Well, I don't say all this to you as someone that just has hd. I'm also a woman, who didn't know how to set boundaries at times in my marriage, and I didn't want to, I was scared of setting boundaries myself. I learned independence real quick when my husband passed away one night in his sleep from a heart attack. I'm the one with hd, he was going to be my caregiver. But i took charge of my life. I purposed to be my own caregiver. I set up a plan for my future with the help of my sister, went to a lawyer, and set everything up, there is no guessing game, i am in charge until i am no longer able to be, and i set up a legal guardian for when I'm no longer able to be in charge. I took away all the guessing games. Nobody in my future has to figure out what i would want, i did everything ahead of time while I'm still able. And i now have a wonderful man in my life, a man i never could have dreamed of, BUT, he will never have to be burdened with what to do with me, how to do it, etc etc etc. I never realized 'til my husband passed away, how much i was expecting of him in regards to my future, and yet, me not giving him a plan. Creating my own life plan was one of the most liberating things i ever did for myself. But, yes that's because of hd, but also as a woman, and a person, you don't know how liberating it is to take charge of your own future, to set out a plan, and to draw lines in the sand that are not to be crossed. It's not only liberating for me, but very freeing for those that love me. You can also set up a plan, and rules, that are not to be crossed, make your plan clear, and stick to it. Seroquel can be a very good choice for hd for some people. It is a mood stabilizer, also a mood lifter, also if taken at bedtime helps give a good nights sleep, it's an anti depressant, and is calming. It also effects dopamine in a way that is actually good for hd and improves muscle function. Ativan can be a good first choice tranquilizer to try for during the day for agitation, it's the least addictive of tranquilizers, and is short acting, hope this helps
PSS You know, when you start doing good things for you, and good things for those you love, i don't mean catering to them, i mean doing what's good for them, good things begin to happen in your own life too. You know, he could be really scared of his future too. I think sitting down and talking about a game plan for hd could take away his fear of his future. Talk about things you two can do to not be scared of hd, but to plan hd while he is still able to. That could very well take away his helpless feeling too. Talk about how you guys can get involved with hd together, whether helping with hd fundraisers, or anything like that, where he can also meet people that are doing something positive about hd. Talk to him about his moods, when he's in a good mood, and tell him you think that must be really hard on him too, and suggest a tranquilizer that he can just take as needed, he might actually like that idea. The idea of having to go on heavy duty meds scares anyone, it scared me too, but if you start with a rather likeable idea like a tranquilizer, that can be taken just when needed, that can open the door for him getting used to talking to his doctor about his moods too
PS When you just let life happen, well guess what, shit happens, and the bigger the pile of shit gets, the more overwhelmed you feel. I'm not saying this from the outside looking in, I'm saying this as a woman that knows. I had no idea how liberating it feels to actually create your own life plan, and to see how freeing it feels. Not only that, when you have a plan, stuff happens, good stuff



Edited 2 time(s). Last edit at 04/19/2014 04:22AM by Barb.

Barb,

You're a good person. Here's a big virtual {HUG} for you!

Will

Barb, that is the most amazing advice I have seen to date for patient, caregiver, family and friends. Absolutely amazing.

I think about the future all the time but not like I did in the past. I believe those around us can be in denial and those with HD.

I will make it a point for my wife to read this. It is a message I've been trying to get across since the beginning.

You could write a great article about this subject.

Mike

Jennie, by giving myself a mental break I was able to come home with a different attitude. While away I gave myself time to grieve the loss of the husband I once married, and come to terms with what he had become. I wasn't "in love" with him anymore and my heart felt empty. I was lonely. Thankfully, I had a dear friend that took my in and gave me a lot of support and friendship.
I did call and stop by the house while I was away to check in on him and make sure he was OK. I told him I wouldn't come back unless he went back to the neurologist for a meds adjustment. He agreed. Although the meds calmed him down a bit, he still had some behavioral issues. The change I made was in how I responded to the hurtful things he said. Instead of getting angry and yelling back at him or crying, I changed my tactics, looking him in the eye and speaking in a leveled, quiet tone. Sometimes I would tell him that he was upsetting me and I needed to take a walk or a drive to give us time to calm down. I would go to the chapel at our church and pray for God to give him and I peace in our hearts. It always seem to help me feel better.
Whatever you decide to do, we will be here to support you and offer you friendship whenever you need it.
May God Bless you and keep you safe.
Donna

Barb-
I, like many, feel you gave excellent advice and put a spin on it that I had never thought of.
Thanks.