It has been so heartbreaking to see the changes in my husbands (soon to be ex, his choice) personality. It has been so confusing. Often wondering is this Steve or is this the HD or is this from his childhood trauma of being neglected and abused. It was so draining trying to understand the man I married and chose to have 4 beautiful girls with... He is so distant, cold, icy, in denial, hates my help or advise. Is mean and cruel. Yet I remember better times and claims of loyalty and love.... Now it all blew up. Sometimes that's how I feel. So tired and weary, like I just want to go up and away in a cloud of smoke and disappear. I'm tired of 'mopping' up after Steve, making excuses for him and now I need to go to battle with the company that ousted him to save my girls and myself and even him. And there he is fighting me on every point. He comes out with illogical stuff like not getting justice with company and opening up a franchise. He no longer can think things through, is the opposite of shrewd and I am afraid that someone is going to take all our 401k, stocks and whatever else he has in his control, before I can do something with it. I don't trust him or his decisions. I've seen too much..... It's very hard to keep plugging along, I feel so tired and weary of everything and Steve is unable or unwilling to give an ounce of encouragement, support, kindness, etc etc And all of this causes grief. I want the old Steve back, who still bungled up stuff, but could say sorry or ask forgiveness etc. Now all I get is a man that seems more like a cold hard rock. I never imagined all the apathy that would arise and flung in my direction. When he was abused and neglected from early childhood... I think it's all coming out now, and I'm the safest target. It stings.

Hey Theresa - I know just how you feel. I was also feeling how much I miss the man I married - how unfair it is to have so much responsibility when we signed up for a partnership. I was watching a live concert onTV and the band played my wedding song and it was just heartwrenching for me to hear. It took me back to such a happy/love-filled day... so far away from where we are now. I have no words of wisdom. Just wanted to write that you are not alone. And you know if he was ABLE to do things differently he would. It is the disease. It is just so sad to watch someone go through this - I miss the man I married so much! Good luck to you...

This is a heavy burden you are carrying, Teresa. My heart goes out to you and your family.

Take care,

Carla

I'm sorry Theresa but know that you don't suffer alone. I've been right where you are and it doesn't help that people don't understand this disease. It's frustrating. I know I didn't sign up for this and did not expect to be a full time caregiver at age 46. I'm tired, I also have 4 daughters to take care of, a home and now a phd to keep track of. We can't take vacations or do anything with friends. My phd is socially akward and says very inappropriate things around other people. He refuses to shower and gets on a kick where he wont take his meds either.
Life with this disease pretty much sucks.
His family doesn't care and I often wonder why I'm sticking around for this abuse. I have to hear about their new homes and wonderful vacations while I do everything I can to hang on by a thread! Not one of them has EVER offered to give the girls and I a break. I'm so sick of hearing "call if you need anything". So I email asking for nothing but ADVICE and don't even get a response. At this point I will chalk it up to HD because each one of his sibblings are at risk and this attitude of indifference is probably early stage symptoms in each one of them.
Let it out....it'll make you feel better for a little while!

Theresa, I'm so sorry for what you're going through too. I'm afraid I don't have any words of wisdom for you either; I wish I did! I'll be thinking of you and hoping that things somehow get better for you and our family. I know that there is grief throughout a loved one's journey with HD. Hopefully, over time, you learn how to maneuver and deal with this new way of being, while at the same time finding happiness . . . take care of yourself, your girls need you . . . thinking of you . . . Michelle

HI Indigo,

Thanks for the response. How old are your daughters? What state are you in? How are your girls doing around their father and coping with it all? Do you think you are able to leave if he is abusive....for your sake and your daughters? Or find a place he can stay? How dependent is he? I have read a lot of personal accounts and info. on HD. My spouse has not deteriorated as your has, yet. Does he have Chorea? Mine would have strange jerking leg movements at night. These jerks consistently happened while he slept, occuring about every 17 secs. or so. It didn't happen through out the night, just sporadically. I am not sure if this was/is HD. I couldn't find any other explanation online for them.

My spouse is living in another state, so I don't have to deal with seeing him everyday. My heart aches because he became so cold and uncaring towards me. I didn't expect him to become so apathetic. Of course, I didn't understand the "organic denial" that went with HD and how it was going to arise with Steve either. He is in a state of denial. I miss that we are not a "family" anymore. Just like you miss the normalcy of vacations, etc. Same here. I am grieving that loss, a lot. We did 'happy kind of family things' together and my daughters, of course, enjoyed that. I feel hollow and dead inside. I think it's from a lack of support (no family on either side for support or to talk with....) and no friends here in this state where I had to return a year ago. I am trying to regularly see a counselor and I'm going to see if the hospital here has some support group to join. (None on HD anywhere that I know of in Alaska.

Many days I just feel that I can't go on any longer....but then i have to because my daughters only have me. Their father will continue to go downhill.

Do you have neighbors to help out or friends? Is your husband becoming more hostile, irritable etc? Steve will be going to an HD clinic Monday (for the first time). I have to get a detailed letter to them asap because he will say everything is fine and most of the issues are his mental decline and behavioral changes. The doc wouldn't have a clue without my input. Steve's father, who he never met until he was 23 is in the final stages of the disease. Steve has 3 'half siblings' at risk, all born after him.

So you have four daughters at risk? My girls are adopted.

Take care.

Theresa



Edited 1 time(s). Last edit at 06/18/2011 12:07PM by theresa.

Hi,

How far along is your husband with HD? I worry about my spouse driving and many other things. He is suppose to go to the HD clinic for an evaluation Monday. He already has been tested and knows he has the defected HD gene. I don't even know how I can get info. after his visit because he won't tell me. He is in denial about having symptoms. I know that isn't his fault and is a coping mechanism and part of the disease.

I have to get a letter to the clinic stat so they have an idea about what is going on mentally with him and how he has changed etc etc. He can pull it together fairly well with strangers, at this point and w/o my input they wouldn't be able to get an accurate picture of how he has declined. I hope the doc he sees is sharp. I will write a detailed 'report' of symptoms I've seen for years, with them steadily getting worse.

I have no idea what people/spouses do once their spouse starts to really decline. I have been worried about his driving amongst other things....

Again thanks for your response.

Theresa

Thanks Carla. I appreciate your words of encouragement.