My husband was diagnosed with HD a year and a half ago. We knew there was a possibility since his mom and uncle both had it. We decided we had to know. The news came when I was 32 weeks pregnant with my third child.
Now a year and a half later I am having to snap out of my denial that this disease starts sooner then the physical. I mean I knew that the personality would begin to change but I wasn't prepared for it to happen when my husband is 32 years old. It has taken a serious toll on me and my marriage. Logically I know he has the disease but I have a hard time differentiating the disease from his true personality. I am only human and I react to the mood swings as I normally do with my husband. Then after all of the yelling and screaming I am slapped back to reality that this is the disease. I am struggling the balance and I am losing greatly.
I know my husband can't do the changing and that I have to. I have gone back to school in order to have a job that will help support our family when the time comes he cannot. I am faced daily with the pain that goes with HD. My husband says to look at today as a good day because the days will only get harder. How do I do this when I am seeing it every moment of my life. I see my kids and I want to cry. I feel so much guilt towards my kids let alone for my husband. I feel I am becoming cold and distant to him. I think I am just protecting myself or am I really mad at him even though I know it is not his fault.
I live in a small town and almost no support system. I feel like I am on an island with no food or water. my marriage is really close to divorce and I just want to be able to move on and just celebrate the life he has now. But how do you not look constantly to the future? We have to watch our spending in order to put enough away when my husband can't work and give my kids 150% of myself because I feel so much guilt. I don't regret the decision in marrying my husband and having his children but I honestly didn't think it would be this hard so soon. i assumed that the early stages, personality, would be hard but how do other spouse's cope?
I attempted to find a therapist that would help but they all know very little about the disease. Even the genetic center didn't have any solid leads. Does anyone relate or have any guidance as how to move on and save myself and my marriage? Anything would be better then the internal pain I feel. Thanks.

I look back at my journal entries from several years ago and I see that I wrote, "I am the one that has to change; Gene cannot." Like you, I do not regret the decision to marry Gene nor do I regret having our two children.

At first, like you, I cried and the heartwrenching pain was almost unbearable. I learned to try to anticipate what would set him off and I tried to avoid those situations. An example, uncapping the toothpaste to brush his teeth was difficult for him; so, I left it uncapped and made sure that after I used it the toothpaste was close to the top of the tube rather than at the bottom. He would get frustrated if the toothpaste did not come out right away. I got a large buttoned remote for the TV since the buttons on the regular remote were too difficult for him to use. I tried to make it a challenge; for each thing that irritated him or frustrated him I took pride in finding a solution.

Acceptance that the man that I married was ill and was changing both physcially and mentally was a very important stepping stone for me. Once I reached that acceptance level, I was able to look at things practically. It was not easy living on egg shells and dealing with the myriad of problems by myself. There was a period of time that I blamed him for being sick and blamed him for not trying, even though logically I knew he could not help it. Again, once I got past the blame and accepted the fact that things would never be the same, I found ways to cope. For me, I lived my life day to day. I made a conscious effort not to worry about tomorrow. Although I planned by putting in place the appropriate legal documents, I did not think about what would happen or might happen. Gene and I controlled what we could and did not dwell on what we could not. There were times that I focused on getting through the next 15 minutes.

You are correct in preparing yourself to assume the financial responsibility of your family. I did that as well but I made a special point of not making Gene feel inadequate. I pointed out the stability he gave to us in other ways.

I felt a tremendous amount of guilt for our children and, when they were old enough to understand, I sat down with them and explained to them how guilty I felt and I apologized to them. Both of them said that they were glad that they were born and glad that they were born to Gene and me. They did not have hard feelings.

Some would say that I am silly but I believe that caregivers are God's special people. I almost felt as if my mission in life was to take care of Gene and make sure that he had the best care.

Remember there is always HOPE. The researchers are working hard to find a cure or therapeutics.

In our case, we have been especially blessed. Our children tested negative.

Take care of yourself.

I've felt the same emotions and guilt you have. I still struggle with them. Sometimes I feel like a horrible person. I resited counseling for awhile. Feeling the same way you do about finding someone who is experienced with HD to talk to. I finally realized this was almost impossible and that it really did not matter if the therapist was familiar with HD. What mattered was that I had someone to talk too. I also decided to go on an antidepressant. The antidepressant has helped me not feel so anxious and overwhelmed by HD. It has helped me feel better and not out of control. I do still get upset with HD and my husband and worry about the future. It's hard to explain but I feel more centered.

Thank you to everyone that responded. It is amazing how much better I feel knowing that what I am feeling is normal and okay. It is the support I have so desperately needing.

Whitney, I'm glad you found this site to get support. Has your husband accepted that he has HD? Can you get him to a dr to get medicines that might help him with his personality problems? Has he tried memantine? I have HD and tried memantine, which is really a drug for Alzheimers and it restored a lot of my organizational and thought processes. I don't have problems with anger, but I think there are drugs that help with that, too. He can change a little, especially if a routine that he can rely on is in place for him.

I know it must be hard for you. I agree that you might seek antidepressants for yourself and therapy with a kind dr, woman or man, who will listen and learn with you about HD. My therpist did research on HD after she began treating me, and tried to learn more to help me. I've been helped by both counseling and meds. Come back often to the site!

Alice,

Wow, I have learned so much more from this online support. I regret not finding it sooner. The words of encouragement and advice is so valuable.

Yes, my husband has accepted he has HD but hasn't told his general doctor. He has told his doctor he is depressed but nothing more as to why. He has been thinking about telling him about it but have held off only because we worry about our disability policy. We have gotten a lot of help from our local genetic counseling office and my husband is part of a study at the University of Washington. But nothing beyond that.

I have seen a lot about memantine. Was your general doctor able to prescribe it for you?

Again, thank you for all of your insight.

Yes, my general dr was happy to have me try it, since she has had good results from it with her Alzheimers patients. She said it seems to be safe with few side effects.

whitney,

i am in the same boat as you. i find myself being so mean to my husband and i can't decide if its because i am so mad at him, the disease, or i'm just trying to put a barrier between us so that when the "time" comes it won't hurt me so badly.

i also have children who are at-risk and it breaks my heart but i, like you, try and give them 150% and enjoy them beyond measure.

you are not alone, we are all in this together.

Whitney-
I, as many who have replied, have had some of the same feelings you do.

A couple things I try to remember are that once my husband who has HD said "I didn't ask for this disease" which is correct and someone also said you have to remember it is the disease causing certain behaviors and doing the things he does, not him.

We are all human and say or do things we regret and someone with HD can be trying but I try to look at what they must be going through as well.

We have two grown children and a couple beautiful grandchildren and I wouldn't trade them for the world. Life is a precious gift and even though I pray each night and many times during the day for a cure for HD I can't imagine this world without them.

Also, there are so many more avenues in which researchers are looking for cures and help which was not the case some years ago.

Another suggestion - there are many medications that can help your husband whether it be for movement, aggressiveness, depression or medications such as memantine. This is a wonderful site to go to for suggestions on medications that might help with certain behaviors in your husband or certain attributes he may portray. I have found help in this way as well.

I also realize that HD is challenging for the one who has it as well as those around it, however, things can always be worse. They can also be better too but always can be worse. We have to give thanks for what we have and realize we all have many blessings as well even with HD.

Lastly, it wouldn't hurt to talk to a counselor. He/She need not be familiar with HD to help you and you could educate them on this illness.

I definitely am not perfect but these are some of the things I try to remember and live by. This site is a tremendous help as well.