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Old 10-01-18, 05:08 PM   #3
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Join Date: Jan 2015
Location: Berkshire
Posts: 368
Default Re: Hi I'm new and feeling desperate

Originally Posted by Jomhv View Post
Hi everyone

I am new to this forum. I live in Australia. My husband is HD+ and we have 3 daughters (14, 12, 12) who are thankfully HD- as a result of doing IVF. My husband is starting to show symptoms mainly in mood swings, aggressive outbursts and apathy. I truly loved my husband in the early years but If I'm being honest I don't love him anymore and haven't for a while but have stayed because I said I would and also the thought of one of our daughters spending their youth caring for him is just too much to bear and not an option. I'm getting to the point now though that I just don't want to be around him. I feel constantly stressed, walking on eggshells and every morning when I wake up the weight of what's happening hits me and it's a struggle to get out of bed and face him. We told the children a year ago about HD as I could see they were starting to question why their dad was different. I wish I could be like a lot of other spouses on this site who say they love their partner and even though times are difficult they know this is where they are meant to be. Is there anyone else out there who knows this is not where they are meant to be but feels completely trapped?

His outbursts are starting to affect the children. If he is behaving inappropriately and they talk to me about it, I calmly have a quiet word explaining that what he is doing is upsetting them so could he please stop. He has started to get really angry though about us "all trying to control him" so it just makes things worse. It's very difficult for teenagers to see their dad acting like a madman. Parents at this age are embarrassing enough without HD thrown in as well.
To see them in tears after an explosion fleeing to the safety of their bedrooms Is devastating. They didn't ask to be brought into this situation and I feel guilty that I knowingly did this. Victims of domestic violence are encouraged to leave. It's not like that with HD though. The phrase " remember it's the disease not the person"' actually doesn't help when you are hugging your crying daughter who is saying "he just really scared me" As a mother I just want to remove us all to protect them but they still love their dad so that would devastate them. I cannot see a solution. I retreat from him a bit more each time it happens but I can see this is exacerbating the problem. If only I could be better at hiding my feelings some of the grief could be avoided. I just find it so hard to pretend to want to be close to him but for the sake of the kids I need to find a way. Does anyone have any tips here? One of the main reasons he explodes is because "I don't care about him". I do care. The thought of him alone in years to come with no to look after him makes me sad and is another reason I stay. We have lived with the shadow of HD for 20 years now mainly by pretending it wasn't going to happen. Well it's happening now and all I can see is a 20 year prison sentence.

I'm sorry to have been so negative. I feel so alone. I talk to friends/my sister but I'm scared that with too much moaning about something that can't be changed I run the risk of losing them and to lose my friends would be devastating. I love them and they are a ray of sunshine who keep me sane
Just wondering if contacting the Australian version of our organisation may help to put you in contact with other people local to your or what else they have to offer in ways of support here is a link
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