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Carers, things that have helped Share your experiences of caring, and pass on practical advice and helpful tips

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Old 22-02-16, 09:59 PM   #1
emmav82
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Join Date: Aug 2012
Location: Enfield, Middlesex
Posts: 43
Default Advice on support coping with behavioural symptoms

Hi there,

I joined this board 3 years ago when my husband Jason, now 31, was going through the testing process. Since he tested positive I haven't been able to face coming back, preferring to bury my head in the sand until the time came when symptoms started and I would then need to face up to it. I was hoping, and indeed expecting to be able to bury my head for much much longer, figuring with a CAG of 44 he wouldn't start getting ill until his early 40's at least, like with his mum.

He has suffered with mental illness for 8 years already with symtoms of psychosis, anxiety and severe depression. But for the past 12 months there has been a slow but gradual change in his mental and cognitive state that, only now it has become unbearable, can I look back and see that what I thought was just his mental illness getting worse is actually most likely the start of HD.

The most prominent symptom is apathy. He has lost all interest in everything he once enjoyed and appears cold and emotionless all the time. He says he feels no emotion anymore, has lost all motivation, has made several attempts on his life (the most recent being Saturday) and is becoming more and more irritable and angry. Just asking him to help with something he responds very defensively and angry, feeling attacked and as though I am ordering him around even when I am trying so hard to be nice and gentle. My response until now is to respond agrily back, so we end up shouting and screaming at eachother in such an aggressive way. Then he becomes very sad and so frustrated. And me too. In the moment I struggle to remember he is ill, and that he may not be able to help his behaviour. I feel so angry at him all the time for being so selfish and uncaring. I don't want to be this person with him as I know this is not him, he's a good man inside but clearly in a lot of pain.

The fact I am very unwell myself makes it harder. I have anxiety disorder, complex PTSD and ME and am bedridden or at the very least, housebound, most of the time. Jason used to be supported by our local mental health team, for 8 years until his care coordinator left last March, since then we have little to no support from the service, nit that theyre equipped to deal with HD anyway. I had a breakdown this weekend and kicked him out as the arguments are getting so frequent and so out of hand and our daughters (13, 8 & 5) have witnessed a couple this year which must be so scary for them. I just feel so alone and unable to support him properly without support for me and the family.

Can anyone advise on what support options are available? I am in touch with my carers centre and am having a carers assessment which they said will set up activities I like such as Gym membership, a fun course at the local college and cinema membership so me and Jason can have quality time. And I have requested a referral back to the HD team in London who diagnosed him in 2013. But if there's anything else anyone can share, any contacts, anything at all, it would be much appreciated.

Thank you, Emma x

Last edited by emmav82; 22-02-16 at 10:47 PM. Reason: error
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Old 22-02-16, 11:45 PM   #2
Gabby
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Location: Berkshire
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Default Re: Advice on support coping with behavioural symptoms

So sorry Emma sounds like you are in a terrible situation and need help I don't want to give you wrong advise on what help you can get so please ring the HdA helpline I am sure they will advise thinking of you

Take care
Gabby
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Old 23-02-16, 11:54 PM   #3
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by emmav82 View Post
Hi there,

I joined this board 3 years ago when my husband Jason, now 31, was going through the testing process. Since he tested positive I haven't been able to face coming back, preferring to bury my head in the sand until the time came when symptoms started and I would then need to face up to it. I was hoping, and indeed expecting to be able to bury my head for much much longer, figuring with a CAG of 44 he wouldn't start getting ill until his early 40's at least, like with his mum.

He has suffered with mental illness for 8 years already with symtoms of psychosis, anxiety and severe depression. But for the past 12 months there has been a slow but gradual change in his mental and cognitive state that, only now it has become unbearable, can I look back and see that what I thought was just his mental illness getting worse is actually most likely the start of HD.

The most prominent symptom is apathy. He has lost all interest in everything he once enjoyed and appears cold and emotionless all the time. He says he feels no emotion anymore, has lost all motivation, has made several attempts on his life (the most recent being Saturday) and is becoming more and more irritable and angry. Just asking him to help with something he responds very defensively and angry, feeling attacked and as though I am ordering him around even when I am trying so hard to be nice and gentle. My response until now is to respond agrily back, so we end up shouting and screaming at eachother in such an aggressive way. Then he becomes very sad and so frustrated. And me too. In the moment I struggle to remember he is ill, and that he may not be able to help his behaviour. I feel so angry at him all the time for being so selfish and uncaring. I don't want to be this person with him as I know this is not him, he's a good man inside but clearly in a lot of pain.

The fact I am very unwell myself makes it harder. I have anxiety disorder, complex PTSD and ME and am bedridden or at the very least, housebound, most of the time. Jason used to be supported by our local mental health team, for 8 years until his care coordinator left last March, since then we have little to no support from the service, nit that theyre equipped to deal with HD anyway. I had a breakdown this weekend and kicked him out as the arguments are getting so frequent and so out of hand and our daughters (13, 8 & 5) have witnessed a couple this year which must be so scary for them. I just feel so alone and unable to support him properly without support for me and the family.

Can anyone advise on what support options are available? I am in touch with my carers centre and am having a carers assessment which they said will set up activities I like such as Gym membership, a fun course at the local college and cinema membership so me and Jason can have quality time. And I have requested a referral back to the HD team in London who diagnosed him in 2013. But if there's anything else anyone can share, any contacts, anything at all, it would be much appreciated.

Thank you, Emma x
Hi Emma
Is Jason seeing a neurologist?
Is he on any medication to try and treat his depression?
Anxiety, apathy and depression are common symptoms of HD.

You need to get back in touch with the medical team, check whether there is an HD specialist nurse and get her to visit you at home.

We had a great HD specialist clinic in Nottingham, consisting of consultant neurologist, HD specialist nurse, physio, occ therapist, speech and language therapist, dietician.
We now live in Newcastle and there is no specialist clinic but we do have a very helpful HD specialist nurse.
After diagnosis my hubby was exactly the same with anxiety, depression etc. Although he says he is not depressed,
! Our HD nurse has made referrals to all of the above and we've had a visit today from someone from something called momentum.
Its lottery funded and it's about " changing lives" . He will have one to one assistance to do things like walking, playing golf, swimming, bird watching virtually anything he is interested in. After 6 weeks of one to one hopefully he may join in group activities ( if we can get him there)
So get in touch and get the help you need.
You have to ask for everything but shy bairns get nowt as they say up north
Good Luck
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Old 24-02-16, 11:38 AM   #4
shiraz
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Location: Merseyside
Posts: 877
Default Re: Advice on support coping with behavioural symptoms

Hi Emma
I've read and re-read your post and read it again and keep going to reply but don't - it is just so sad and brings back memories of the dreadful times we went through. All I can say is that arguing with someone with hd will get you no where....they get an idea in their head and there is no changing it. The apathy and anxiety and depression are all par for the course in many cases and these things can be addressed not just through medications but by somehow changing your own responses and how you deal with things - not easy to do and for you with your own illnesses and with three children to consider. I just...feel your pain. You increasingly become a carer, not a wife, and a jack of all trades, and the person you married is simply "gone".
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Old 25-02-16, 06:17 PM   #5
Crystal
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Join Date: Sep 2015
Posts: 219
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by emmav82 View Post
Hi there,

I joined this board 3 years ago when my husband Jason, now 31, was going through the testing process. Since he tested positive I haven't been able to face coming back, preferring to bury my head in the sand until the time came when symptoms started and I would then need to face up to it. I was hoping, and indeed expecting to be able to bury my head for much much longer, figuring with a CAG of 44 he wouldn't start getting ill until his early 40's at least, like with his mum.

He has suffered with mental illness for 8 years already with symtoms of psychosis, anxiety and severe depression. But for the past 12 months there has been a slow but gradual change in his mental and cognitive state that, only now it has become unbearable, can I look back and see that what I thought was just his mental illness getting worse is actually most likely the start of HD.

The most prominent symptom is apathy. He has lost all interest in everything he once enjoyed and appears cold and emotionless all the time. He says he feels no emotion anymore, has lost all motivation, has made several attempts on his life (the most recent being Saturday) and is becoming more and more irritable and angry. Just asking him to help with something he responds very defensively and angry, feeling attacked and as though I am ordering him around even when I am trying so hard to be nice and gentle. My response until now is to respond agrily back, so we end up shouting and screaming at eachother in such an aggressive way. Then he becomes very sad and so frustrated. And me too. In the moment I struggle to remember he is ill, and that he may not be able to help his behaviour. I feel so angry at him all the time for being so selfish and uncaring. I don't want to be this person with him as I know this is not him, he's a good man inside but clearly in a lot of pain.

The fact I am very unwell myself makes it harder. I have anxiety disorder, complex PTSD and ME and am bedridden or at the very least, housebound, most of the time. Jason used to be supported by our local mental health team, for 8 years until his care coordinator left last March, since then we have little to no support from the service, nit that theyre equipped to deal with HD anyway. I had a breakdown this weekend and kicked him out as the arguments are getting so frequent and so out of hand and our daughters (13, 8 & 5) have witnessed a couple this year which must be so scary for them. I just feel so alone and unable to support him properly without support for me and the family.

Can anyone advise on what support options are available? I am in touch with my carers centre and am having a carers assessment which they said will set up activities I like such as Gym membership, a fun course at the local college and cinema membership so me and Jason can have quality time. And I have requested a referral back to the HD team in London who diagnosed him in 2013. But if there's anything else anyone can share, any contacts, anything at all, it would be much appreciated.

Thank you, Emma x

Hello Emma - what a terrible situation you are in at the moment and seemingly not receiving any proper support that you clearly need so urgently. You say that you have had very little or no support from the mental health team since your co-ordinator left their post last March. Sorry, but not a good enough reason for them not to be helping just because a member of their team has left. I would suggest that perhaps you get back in touch with them - and although I agree that they may not have a lot of understanding re HD, they may and should be able to offer you some support to deal with the issues that you have explained to us. Is your G.P. not helping in getting this support for you? I hope your referral to the HD team in London is given the urgency it requires? Is you local specialist HD advisor helping with this? I believe they will also offer you advice and support if you telephone them - and I am surprised that you have not been receiving follow-up appointments (if that is the case?) You say you are in touch with your local carers centre. Do you mean you are waiting for a carers assessment from Social Services or a local carers support group. If you have a local carers support group I'm sure you would find this very helpful, but I realise that this may not be available perhaps in some areas. Am trying desperately to think of any other advice to offer ......... Crystal x
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Old 03-03-16, 02:07 PM   #6
emmav82
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Join Date: Aug 2012
Location: Enfield, Middlesex
Posts: 43
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by Gabby View Post
So sorry Emma sounds like you are in a terrible situation and need help I don't want to give you wrong advise on what help you can get so please ring the HdA helpline I am sure they will advise thinking of you

Take care
Gabby
Hi Gabby,

Thank you for your response, I have contacted the HDA and am now in touch with their specialist advisor.

Many thanks

Kind regards

Emma
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Old 03-03-16, 02:14 PM   #7
emmav82
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Join Date: Aug 2012
Location: Enfield, Middlesex
Posts: 43
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by toosh View Post
Hi Emma
Is Jason seeing a neurologist?
Is he on any medication to try and treat his depression?
Anxiety, apathy and depression are common symptoms of HD.

You need to get back in touch with the medical team, check whether there is an HD specialist nurse and get her to visit you at home.

We had a great HD specialist clinic in Nottingham, consisting of consultant neurologist, HD specialist nurse, physio, occ therapist, speech and language therapist, dietician.
We now live in Newcastle and there is no specialist clinic but we do have a very helpful HD specialist nurse.
After diagnosis my hubby was exactly the same with anxiety, depression etc. Although he says he is not depressed,
! Our HD nurse has made referrals to all of the above and we've had a visit today from someone from something called momentum.
Its lottery funded and it's about " changing lives" . He will have one to one assistance to do things like walking, playing golf, swimming, bird watching virtually anything he is interested in. After 6 weeks of one to one hopefully he may join in group activities ( if we can get him there)
So get in touch and get the help you need.
You have to ask for everything but shy bairns get nowt as they say up north
Good Luck
Hi Toosh,

Sounds a lot like my husband, he comes across very depressed and low but insists he isn't, but does say he has no feelings at all, and when he sits in silence for ages and I ask what he's thinking he says he has no thoughts. Very hard to understand that. I contacted the HDA, am in touch with our regional specialist now who is going to visit us and refer my husband to social services. And we have managed to get a referal back to his clinical HD team at Queens Square London. They did offer him a cancelled appointment very quickly last week but just as we were leaving to go there I got a call saying my dad was having a stroke so obviously we had to cancel that. Hopefully we won't be waiting too long.

I'm glad to hear you have some good support, and the momentum referral sounds very positive. Fingers crossed your husband gets to the activities and enjoys them.

Kind regards

Emma
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Old 03-03-16, 02:19 PM   #8
emmav82
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Join Date: Aug 2012
Location: Enfield, Middlesex
Posts: 43
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by shiraz View Post
Hi Emma
I've read and re-read your post and read it again and keep going to reply but don't - it is just so sad and brings back memories of the dreadful times we went through. All I can say is that arguing with someone with hd will get you no where....they get an idea in their head and there is no changing it. The apathy and anxiety and depression are all par for the course in many cases and these things can be addressed not just through medications but by somehow changing your own responses and how you deal with things - not easy to do and for you with your own illnesses and with three children to consider. I just...feel your pain. You increasingly become a carer, not a wife, and a jack of all trades, and the person you married is simply "gone".
Hi Shiraz,

thank you. You are right it is about my responses too. The frustrating thing is I am a counsellor and studying towards a career in clinical psychology, so I get even angrier at myself as I feel I should understand him and therefore respond much better than I am doing. It's just very hard. But I have been trying and have found by slowing down, matching his pace a little, and not expecting too much of him, things have been okay since I last posted. He is of course very up and down but I hold on to the good and okay times. Your words "the person you married is simply 'gone'' resonated with me as I think thats what I am most scared of, the losing him and him being lost but still with me physically, being reminded of that every day. Thats scary and very sad. But it was something I have always expected and it looks like it's gradually starting to happen.

You said the dreadful times you 'went' through, how are things now? I hope you are okay

Kind regards

Emma
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Old 03-03-16, 02:28 PM   #9
emmav82
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Join Date: Aug 2012
Location: Enfield, Middlesex
Posts: 43
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by Crystal View Post
Hello Emma - what a terrible situation you are in at the moment and seemingly not receiving any proper support that you clearly need so urgently. You say that you have had very little or no support from the mental health team since your co-ordinator left their post last March. Sorry, but not a good enough reason for them not to be helping just because a member of their team has left. I would suggest that perhaps you get back in touch with them - and although I agree that they may not have a lot of understanding re HD, they may and should be able to offer you some support to deal with the issues that you have explained to us. Is your G.P. not helping in getting this support for you? I hope your referral to the HD team in London is given the urgency it requires? Is you local specialist HD advisor helping with this? I believe they will also offer you advice and support if you telephone them - and I am surprised that you have not been receiving follow-up appointments (if that is the case?) You say you are in touch with your local carers centre. Do you mean you are waiting for a carers assessment from Social Services or a local carers support group. If you have a local carers support group I'm sure you would find this very helpful, but I realise that this may not be available perhaps in some areas. Am trying desperately to think of any other advice to offer ......... Crystal x
Hi Crystal,

Thank you. I have recently been in touch with the mental health team funnily enough and gave them a piece of my mind. Their excuse is they are extremely understaffed and with each staff member therefore having heavier workloads that they cannot cope with, the enfield mental health service is in crisis itself at the moment (which is extremely frustrating for us service users). They have however said they will carry out a multidisciplinary team meeting and will look at increasing his support. Referrals have been made the regional specialist HD advisor to social services for hubby and HDYO for the kids and she will meet with us soon. Plus he's been referred back to his clinical HD team as he has not seen them since 2010, and hasn't seen the genetics team since his confirmed test in 2013, thus he needs referring back. They did offer a folow up after the positive diagnosis but he could not face it. We have a local carers centre dedicated to supporting enfield carers, they offer grants, workshops, counselling, days out, support groups and advice service, plus carers assessments in order to get a direct payment as a carer for myself to treat myself each month for things like hairdressers/spas etc... They are currently helping me with setting that up so thats a good thing.

Hopefully between these referrals we'll get some more support that will make coping feel a little easier.

Kind regards

Emma
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Old 03-03-16, 06:42 PM   #10
Gabby
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Location: Berkshire
Posts: 335
Default Re: Advice on support coping with behavioural symptoms

Quote:
Originally Posted by emmav82 View Post
Hi Gabby,

Thank you for your response, I have contacted the HDA and am now in touch with their specialist advisor.

Many thanks

Kind regards

Emma
so glad Emma and thank you for taking the time to reply individually to me x

Gabby x
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