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Old 08-01-18, 10:04 PM   #1
Jomhv
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Join Date: Nov 2017
Posts: 10
Default Hi I'm new and feeling desperate

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
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Old 10-01-18, 12:31 AM   #2
Spanishgraeme
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Posts: 9
Default Re: Hi I'm new and feeling desperate

Quote:
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
It's a very steep learning curve, once things start.
My wife is sitting on the other side of the room, right now. She's being really nice.
I'm enjoying our time together today.

Yesterday...........Oh my god.........for no reason that I can think of......she wanted a divorce. She's asked for a divorce a few times, now. I've just started saying "yes.....if thats what you want".

I don't think that she does want a divorce.........I can't imagine how she would cope if I set her up on her own.......I just hope that it's a phase........my understanding is that sometimes they move on to something totally different. I live in hope of this.

Yes I often feel completely trapped and that I should be somewhere else.
Two of my three children have so far proven to HD+. I can't let them see that it's ok for their chosen partner to leave them because they are sick. It's a huge responsibility for me to show them that people can stick by them. My options are limited because of this.
Your situation is different though. In my opinion.......if your children are suffering in their current situation .........all options are on the table.....only you know the answer to that one though. 🤔

For me, it is very difficult to hide my feelings. I completely understand that problem.
I've learned over the last few months to bite my lip.
No amount of trying to explain what is really happening will do any good.

I've been told this by others also. It will just result in a huge argument......that helps nobody.

My wife currently does not accept that there is anything wrong with her.

She needs to know that there is a problem before I can help to provide a solution.
She is not at that stage yet......she is still in denial.

The consultant did not do her any favours here. He told her recently that he could not detect any outward signs of HD.( Even though there are some obvious hand spasms.)

She took this conversation to mean that she doesn't have HD. If I try to explain what he actually meant......... I'm the lowest form of pondlife for saying something so terrible .........divorce then rears it's ugly head.

Not worth the trouble.

Feeling like your being negative, on occasion, is to be expected.
Many of the feelings that you are having, match mine exactly.
I'm 50..........I see the next 20 years as most of the rest of my life.
Sometimes.....I manage to convince myself that it's pointless ruining two lives......that maybe I should just take the divorce offer and use that as a 'get out clause'.

That doesn't last for long though. I'm the sort of person that could find no peace and it would be the first thing I'd think about in the morning and last thing at night.

The more I think about things......I feel that the best solution is to find joy, where you can and try to make time for yourself wherever possible.........that might be the best we can hope for.

Writing these things down is helping me to get things straight in my head.

I hope it is of some help to you too. 🙂
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Old 10-01-18, 05:08 PM   #3
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 335
Default Re: Hi I'm new and feeling desperate

Quote:
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 www.huntingtonsnsw.org.au
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Old 10-01-18, 11:52 PM   #4
elessi
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Join Date: Feb 2017
Location: Cornwall
Posts: 21
Default Re: Hi I'm new and feeling desperate

hi i did reply to you on med fed up thread, but i thought i would reply here as well. i know where you are coming from im in the same place the only difference is my kids are 1/2 the age of yours and its scary. we have adult social care and childrens services involved because he is moodt bad tempered and threatening towards me.
its got hard to deal with, i thought when we got married we would spend the rest of our lives together so we had kids. planned things together we used to have fun and laugh a lot, i miss the kisses and cuddles we no longer get that close so he thinks i dont care. I love him but hd has a strange effect, he pushes me away so much I dont know how to deal with it. I want him to love me like he used to, the medication helps the moods are calmer thaks to olanzipine he also takes mirtazipine which helps.
I have no advice other than a day at a time, maybe there is a local group that he would be willing to go to for a while so you can have a break. my doctor is looking into that for me. my hubby denies he needs help and says its me making him ill, he often wants a divorce I say ok and he usually forgets about it until next time. in the end you have to do whats best for your kids, I wish you luck xx
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Old 11-01-18, 02:05 PM   #5
Jomhv
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Join Date: Nov 2017
Posts: 10
Default Re: Hi I'm new and feeling desperate

Quote:
Originally Posted by Spanishgraeme View Post
It's a very steep learning curve, once things start.
My wife is sitting on the other side of the room, right now. She's being really nice.
I'm enjoying our time together today.

Yesterday...........Oh my god.........for no reason that I can think of......she wanted a divorce. She's asked for a divorce a few times, now. I've just started saying "yes.....if thats what you want".

I don't think that she does want a divorce.........I can't imagine how she would cope if I set her up on her own.......I just hope that it's a phase........my understanding is that sometimes they move on to something totally different. I live in hope of this.

Yes I often feel completely trapped and that I should be somewhere else.
Two of my three children have so far proven to HD+. I can't let them see that it's ok for their chosen partner to leave them because they are sick. It's a huge responsibility for me to show them that people can stick by them. My options are limited because of this.
Your situation is different though. In my opinion.......if your children are suffering in their current situation .........all options are on the table.....only you know the answer to that one though. 🤔

For me, it is very difficult to hide my feelings. I completely understand that problem.
I've learned over the last few months to bite my lip.
No amount of trying to explain what is really happening will do any good.

I've been told this by others also. It will just result in a huge argument......that helps nobody.

My wife currently does not accept that there is anything wrong with her.

She needs to know that there is a problem before I can help to provide a solution.
She is not at that stage yet......she is still in denial.

The consultant did not do her any favours here. He told her recently that he could not detect any outward signs of HD.( Even though there are some obvious hand spasms.)

She took this conversation to mean that she doesn't have HD. If I try to explain what he actually meant......... I'm the lowest form of pondlife for saying something so terrible .........divorce then rears it's ugly head.

Not worth the trouble.

Feeling like your being negative, on occasion, is to be expected.
Many of the feelings that you are having, match mine exactly.
I'm 50..........I see the next 20 years as most of the rest of my life.
Sometimes.....I manage to convince myself that it's pointless ruining two lives......that maybe I should just take the divorce offer and use that as a 'get out clause'.

That doesn't last for long though. I'm the sort of person that could find no peace and it would be the first thing I'd think about in the morning and last thing at night.

The more I think about things......I feel that the best solution is to find joy, where you can and try to make time for yourself wherever possible.........that might be the best we can hope for.

Writing these things down is helping me to get things straight in my head.

I hope it is of some help to you too. 🙂
Hi Graeme

Thank you for your response. It has helped enormously to know you are feeling the same way. My close friends have been amazing but occasionally I will say something quite terrible which makes them obviously uncomfortable and they look at me and say "I don't know what to say". Unless you are living it you can't possibly understand what drives you to say these things. I don't want to drive them away. At least on here we can pretty much say how we feel and there's no judgement only understanding.

I'm very sorry your children have tested positive. At least now though with the Ionis trial there is true hope that a treatment is around the corner. I told my oldest daughter about it and she asked " will it make dad like he used to be?" I said I don't know but probably not. Will be years before its available so will probably be too late for our spouses.

You mentioned your wife sleeps a lot. Have you researched this? Is she medicated. If yes this may be a cause. Also HD inhibits melatonin production which in turn disrupts the natural circadian rythym. I think sleep in HD is typically disturbed ie lots of broken sleep more than sleeping for such long periods.

My husband is away for 6 days with friends. Things have been very peaceful and I'm actually feeling relaxed. I typed a whole huge response to your post above this morning as was feeling quite emotional but I was automatically logged out and lost it all. Even 12 hours later with not being around him I've lost some of the despair I was feeling. I've been thinking it would be lovely to buy the house next door/in the same street for him and we could go to visit and then escape when we need to....... can't see him agreeing to that though.

Regarding the consultant have you ever filmed her behaviour to show the doctor? Surely there would be a diagnosis after that?

Ongoing triggers for his rages are because I'm avoiding him he accuses me of "not caring" and when he behaves inappropriately and we ask him not to "we are trying to control him" Do you think it would help if we had a talk when he is well rested, cool and fed that whether we like it or not HD has changed our relationship. In the same way the way I see him as my husband has changed, his expectations of me as his wife need to change too. I will stay but to do so I need some space without being berated all the time for my inadequacies and instead of the notion of us trying to control him we are instead managing his symptoms. Or does HD not work that way? He's still in very early stages so when not in a rage he is reasonably rational.

"Find joy where you can and time for yourself where possible" What a sad, confronting statement that our lives have come to this for the next 20 years......

Thanks again. I was nearly crying reading your response but the kids were close so didn't want to alarm them. I don't feel so alone now.
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Old 11-01-18, 02:09 PM   #6
Jomhv
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Join Date: Nov 2017
Posts: 10
Default Re: Hi I'm new and feeling desperate

Quote:
Originally Posted by elessi View Post
hi i did reply to you on med fed up thread, but i thought i would reply here as well. i know where you are coming from im in the same place the only difference is my kids are 1/2 the age of yours and its scary. we have adult social care and childrens services involved because he is moodt bad tempered and threatening towards me.
its got hard to deal with, i thought when we got married we would spend the rest of our lives together so we had kids. planned things together we used to have fun and laugh a lot, i miss the kisses and cuddles we no longer get that close so he thinks i dont care. I love him but hd has a strange effect, he pushes me away so much I dont know how to deal with it. I want him to love me like he used to, the medication helps the moods are calmer thaks to olanzipine he also takes mirtazipine which helps.
I have no advice other than a day at a time, maybe there is a local group that he would be willing to go to for a while so you can have a break. my doctor is looking into that for me. my hubby denies he needs help and says its me making him ill, he often wants a divorce I say ok and he usually forgets about it until next time. in the end you have to do whats best for your kids, I wish you luck xx
Hi Elessi

Thanks for your response. Is very late here now so will respond properly in the next day or so
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Old 12-01-18, 11:29 PM   #7
Jomhv
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Join Date: Nov 2017
Posts: 10
Default Re: Hi I'm new and feeling desperate

Quote:
Originally Posted by elessi View Post
hi i did reply to you on med fed up thread, but i thought i would reply here as well. i know where you are coming from im in the same place the only difference is my kids are 1/2 the age of yours and its scary. we have adult social care and childrens services involved because he is moodt bad tempered and threatening towards me.
its got hard to deal with, i thought when we got married we would spend the rest of our lives together so we had kids. planned things together we used to have fun and laugh a lot, i miss the kisses and cuddles we no longer get that close so he thinks i dont care. I love him but hd has a strange effect, he pushes me away so much I dont know how to deal with it. I want him to love me like he used to, the medication helps the moods are calmer thaks to olanzipine he also takes mirtazipine which helps.
I have no advice other than a day at a time, maybe there is a local group that he would be willing to go to for a while so you can have a break. my doctor is looking into that for me. my hubby denies he needs help and says its me making him ill, he often wants a divorce I say ok and he usually forgets about it until next time. in the end you have to do whats best for your kids, I wish you luck xx
Hi Elessi

Thank you for your reply. Yes it does sound as though we are in a very similar place. Having a husband who is bigger, stronger and louder than me with HD is a scary place to live. If we at least had the upper hand in being physically stronger it might not be such a vulnerable place to be.

My husband has only just started to get aggressive in the past few months and is still quite capable of taking care of himself so I really don't have it that bad yet. The trauma he causes the children though is very distressing to me. Having slightly older children makes it hard to leave as they are old enough now to feel a sense of responsibility for their dad. My oldest daughter said to me a couple of years ago before they even knew he had HD that if we ever got divorced (all her friends parents have divorced in recent years) she feels like she would have to live with dad as he would need someone to look after him as he doesn't seem like he could take care of himself very well. This was before she even knew!
I guess my advice to you is if you are seriously thinking about leaving, sooner rather than later with regard to the children feeling guilty, wanting to care for their dad is better in my opinion. Others on here may disagree though. Each situation is different.
I feel heartless considering instigating separation but the need to protect my children from emotional and potentially physical damage is a very strong emotion for me. Even if we do leave though, they will still be traumatised with guilt and worry about how their dad is coping so really there is no solution. It's quite simply a living hell.
Take care
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