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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
Approved Member
 
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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