Hi, this is Melissa Barnes, its been quite a while since I was on here.
I am hd positive dealing with early hd. I have 6 children, I had 5 before I knew what hd was and that it was in my family. My kids are 24,23,20,17,13 and 4. Yeah I went a little crazy left my husband for 3 yrs and had another mans baby (not on purpose, because I was not planning another because of the hd). A couple years ago I moved back in with my husband and kids, now as my symptoms have gotten worse they dont want me to live here anymore because it is too much stress for them, my 4 yr old is special needs and they have a hard time with that as well.
My question is how do I deal with that rejection without losing my mind? I guess I dont blame them but being totally focused on being the best mom I could be for 24 years has made it my identity. I feel this has taken my worth away. I am very depressed and hurting so much!!
Have others of you had this happen? How did you deal?
Thanks,
Melissa B.

Melissa I can't comment on the "Mother" aspect. I didn't get HD until later life. My Children are at the same ages as your oldest. Everyone has their cross to bear and you and your family certainly do as well.

Looking at your post and not knowing the entire story maybe counseling is an option to consider. This of course takes both of you and your diligent efforts to work.

Rejection is a very hurtful thing for anyone especially with HD. So many people don't understand HD. That doesn't make it any easier. The loss you are feeling would make anyone feel bad under healthy circumstances.

Hang in there,

Mike

(edited 'cause I lost the point of the post)



Edited 1 time(s). Last edit at 02/09/2013 06:20PM by mikee.

Yes, we have had marriage counceling and family counseling. None of it made any difference! Basically my husband told me he was not willing to change to accomidate mine or my daughters illnesses. And since I know neither of us can live like this any longer. I see moving is the only answer. My doc just had me apply for SSDi and it is possible something may come open in public housing in the next three months. My doc and I are just afraid that as the HD gets worse I wont be able to defend myself if necessary. The public housing projects is a rough place to be.
Melissa

I'm so sorry to hear of your story, Melissa. Do you have any family who you can count on to help you and your youngest daughter out? I am very concerned for both of your well being as your HD progresses, and her being so young.

Rather than public housing, is there a small rooming house or private apartment you could rent? If you are determined to be disabled, could you go to a senior building, where rent is just as low, but crime is not as much of a threat. If you have not yet applied for medicaid, do that. The social services that goes along with that may be able to find some assistance for both you and your daughter, like a community based case manager or guardian.

Like it or not, your husband must also realize that he may have some responsibility to support your needs and care, if you are still married. (Likewise, the child's father) Social services may be able to help you in both of these regards.

Are any of your kids sympathetic to your needs? It is very sad that they are turning their back on you. Keep trying. When my husband was emerging with his symptoms he did some very awful things. I ran to protect myself and my kids, it took a while, a long while, but when he needed my help, I forgave him. It is the HD that led to his actions. I hope for your sake your family can turn around.

Take good care,
Patty

I am so sorry to read your post. Everyone experiences life differently and the only thing to do is continue to resolve issues. Before you do anything, take some time and put yourself in everyone else's shoes and look at the years gone by from their point of view. Nothing in the past can be changed, the only thing that can change in the future and you have full control over the future. Sit down with each of them and talk through it.

Take care,

Melissa my wife has been symptomatic for the last 6 years. Our family is very young. I have a 9,8 & 6 year old children. A year ago I had to sit the 2 edlest kids down and explain to them what is happening with their mother. The 2 of them were continuously arguing with their mother. Now my wife does have outbursts and mood changes and due to this my 2 eldest are starting to push their mother away. I explained to the kids that's there's nothing to be ashamed of and that their mother loves them and to cherish the time they have with her now. They no longer want to do activities with their mother. They don't want to be seen or stay home alone with her. I now have the 3 of them attending to counselling. I have answered all of the questions my kids have thrown at me. Its sad that your family is pushing you away especially that they are older\mature and should have a better understanding. As for my kids they are extremely young and I expected some type backlash.

I hope things change for you.

Robbyss, please don't feel like I am picking on you but I am concerned. It seems like you are blaming the children for wanting to avoid their mother but this is natural if she is having mood swings and outbursts. As an adult woman I hated having to constantly walk on eggshells with my first husband because I never knew what trivial or irrational thing would set him off (like screaming at me because I wouldn't let him have an aquarium when in fact he DID have an aquarium full of fish in the other room). I worried about abuse, which did start to occur. I found that if I was sitting at my computer he left me alone and watched TV or played video games so I did that a LOT. Trips to get ice cream would end in disaster because he always thought the server gave me a larger scoop (so here take it, no I don't like the kind you got) and a vacation trip ended in abuse. Are you sure she isn't hitting the children when you aren't around? Are they afraid of her? It is common for children not to tell unless asked.

The other thing that concerned me is that you said you have managed to avoid antidepressants so far? I'm assuming that you mean for your wife? Why do you think that's a good thing? Antidepressants help with inflexibility and irritability and the SSRI antidepressants (like Lexapro) actually elevate brain derived neurotrophic factor which is reduced in the brains of HD patients. Quality of life is important for the person with HD and medications can make him or her feel better. Antidepressants aren't chemical straight jackets, they are intended to treat problems in the brain.

Without my anti depressants, Im pretty sure I would be out of control and likely to let more impulses control my behavior! I would probably slapped someone by now!! Anti depressants are a God send for people suffering from HD!!
Melissa

Marsha I don't feel you are picking on me. At this point in time my wife hasn't hit the kids and I ask them whenever I have left them alone with her. I'm not blaming the children either for not wanting to be around their mother as they are quiet young but I want them to spend as much time with their mother as possible. Huntingtons started early with my wife and sister inlaw. She was diagnosed at 32 and she is now turning 38. She can barely walk without stumbling, eat without choking and can barely understand her speech. The kids were effected by her outbursts and mood swings. All 3 kids see a counsellor. Also now my employer has been understanding and I work from home 90% of the time so the kids are not left alone with their mother. She was violent with me at the beginning and only me before the doctor increased her dosage of the antidepressant prescribed to her. I make sure she takes her medication everyday as they seem to calm her down. When she isn't on them she is a very different person.
Also like you I used to walk on eggshells around her and our vacations and outings always end in a disaster.

I was actually referencing that I myself have avoided antidepressants to cope with things.