I feel so trapped emotionally, walking on eggshells through life. Here's an excerpt from my journal, I hope it's ok to post this here...

I know it's my fault; everything's my fault because you can't see the whole picture. Your brain is letting you down. It's shutting out the things it can't handle in an effort to protect you. From your limited scope, you act on impulses, often in anger to defend yourself and place the blame on me. I get it, but it doesn't make the day to day challenges much easier.

I love you. I loved the man that I knew before HD. I love the man trapped in perpetual loss of self. That's why I'm here beside you, fighting this battle for the both of us until we can no longer fight. This isn't the marriage I envisioned, but it's the one we've got and I'm trying to be your friend instead of your wife. I'm learning on the job and I'm making mistakes, but I'm here...

There are days I feel like I am losing myself too. Words fail me. I try to protect what's left of our family. I try to prepare for the long road ahead. I try to manage doctor appts, work, schedules for the kids and all the details of home life. I try to make things fun. I try to do it all, but I always seem to fall short and you let me know how badly I'm failing.

I hate this disease! I hate the brokeness of emotional depravity. I hate the loss of dreams. I hate losing my best friend, my confidant, my children's father, my lover...The loss is continually growing and I don't know if it's safe to fight for you anymore, at least not from under the same roof...

Thata exacly how I feel, sometimes but then I go back to the life before HD and he was my best friend, great husband, great father and give me patience to keep going because I know this is the HD not him and I will try my best to take care of him at home with family around it is not easy and when I need a break I just go to the mountains and screem that is what it is helping me at the moment, this is not the life I want it but it what I got and try the best that I can to deal with it, turn to my family and friends for support, I really know what you are going thru and I hope that you find somethng to give you peace to made a decision that is best for you, him and your family, my prayers are with you.

Bless you both and all those fighting your battle. I think you are a good example to all of us.
Mike

Thank you for that post. It represents a lot of what I feel at times.
I miss and grieve for my husband and partner.
I miss conversations and knowing what he was thinking even before he had to say it.
I miss our secret jokes and the special smile and look in his eyes when we both realize we were thinking the exact same thing.
I miss holding hands and cuddling with him on the couch.
I miss thinking and dreaming about the future and my retirement years with my husband.
I hate that when thinking about future adventures, it all starts with, "when my husband is gone, I will be able to....."
I'm often lonely and wish desperately for someone to give me a hug or a little attention.
I wish conversations did not always start with the question "How is your husband feeling", or center around his disease and how we are coping.
I love to laugh, and I miss that I don't often get the opportunity to do so.
I love my family, but I wish they didn't always look like they feel so sorry for me. I'm strong, I can handle it. Can you please just treat me like a daughter, sister, and friend, instead of this selfless caregiver.
I'm not perfect as you seem to think, and I certainly will loose my mind if I have to live up to whatever it is you think I am. I will never keep the house spotless, I'm not aways patient with my husband and kids, and I do get irritated and grouchy when I have to answer the same question over and over again, day in and day out.

Your words brought me to tears. We are a special breed, aren't we. I've remarked this to others at times...this life isn't for everyone, but it's the life I have, and I'm not walking away until I see him through.

Take good care,
Patty

I get exactly what you are saying and I really feel for you and your sad loss. I, too, am going through something similar with my wife who is of yet undiagnosed. Life is becoming intolerable and she is blaming me for everything. She is completely unaware of her dysfunctional behaviours and doesn't seem to have the cop on to realize that what she is doing is abnormal.

Hope things are ok for you!

To all,

Your postings brought me to tears, I feel the pain and grief and the loss of my kids on a daily basis. I feel scared of the future, will I be able to see them through? I pray for God to keep me here until they are gone, because I am their only everything. It's such a heavy burden to carry.
As Patty said, we are a special breed. HD is not for the faint of heart.

Sending Love!!

Carla

I can't even begin to tell you how much these words hit so close to home. From all of you. There are so many days when we go through our daily lives feeling like nobody else GETS it, and then I read this and I just know that we are not alone.

I understand

Thank you for posting that some times you feel like you are the only one that is going through this.
Its makes you feel better that someone else understands

As a gene positive individual I feel like I shouldn't marry or get involved with someone because I can't put another person I care about through this. Granted as soon as I tell someone I'm seeing about HD they split pretty quickly.

Casey - I watched my mother have terible days with my HD father until he was put in a home. I have a 42 CAG and feel it's my duty to be sure I
stop HD where I can by not having chidren. ( divorced with no kids thank god.) Feel it would be very unfair to put anyone through what my mother went through. I feel I'm doing my part to slow the spread of HD in my little way.

There are ways of having kids that don't have the gene, preimplantation genetic diagnosis being the primary one. Also, what is essentially a cure, ISIS antisense, is moving to clinicals soon but start date is thus far unknown. It's just a big gamble for a nonaffected indidual to get involved with someone with HD.

I know that what I am going to say that I except is not going to be very popular.

There is more to parenting than just having an HD free child. Having a child also means being able to parent that child throughout his/her life. I grew up in a home with a really ill parent (not HD) and it is not a nice childhood. My spouse has HD and my at-risk adult children have decided not to have children of their own. The role of a parent is so critical in creating an emotionally health adult and that job goes on for a long time.

My spouse was abused as a child and teen from his HD mother. He had an absentee father who was busy pursuing his career. It affected my spouse's ability to be a functioning parent even though his official HD onset was when my children were young adults. Research suggests that onset is long before official diagnosis from physical symptoms.

My adult children have found other ways to be involved in a healthy way with children. They volunteer at church with children's and young peoples groups, do international volunteer work with 3rd world children, sponsor 3rd world children through Aid-organizations and visit them and there families, etc. My adult children say HD has broadened their world in a way they would never have considered. There are many ways to be a parent to children.

CP

I actually agree wholeheartidly. A dysfuncitonal home is not fair to the one's kids and no way to produce health, well balanced adults.

You are correct, by the time physical sympotoms arise one's brain has taken quite a beating and there are associated cogniative and psychological problems that pop up well be fore that point and result in very unstable people/poential parents.

My life is on hold until the ISIS treatment comes which is tortorous.