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Old 17-09-14, 02:45 PM   #1
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Default Mother with hd beinf abusuve and suicidal

I am 20 and i have been looking after my mum with hd, she is 50. Today she was out of control and i didn't know what to do.
It started with her still being in bed at 1pm and I told her to wake up because her support worker was supposed to come at half one. Ten minutes later she still hadn't moved so I tried to drag her out of bed but she just got straight back in, so i tried sprinkling water on her and she got up shouting saying I was being abusive and she was going to tell her support worker that i was being abusive. I said stop it mum if you say that then you will get me arrested and she said good i hope you do get arrested. Then she went in the kitchen saying shes going to kill herself and she kept grabbing knifes and running them along her wrists but i kept taking them off her. I shut her out the kitchen so she couldn't get to the knifes but five minutes later she said please let me in i just want a cup of tea and something to eat, so i went in the living room and she came through with a boiling hot cup of tea and purposely spilt it on me (the whole mug) and said oops its the huntingtons really sarcasticly. Ive gone upstairs crying and i just don't know what to do. I don't think i can cope much longer with being treated like this but i don't know what to do. Please somebody help me. Ive been tested positive for huntingtons a few months ago and I don't know if i can spend all my life looking after her and then getting it myself :'(
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Old 18-09-14, 07:58 PM   #2
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Default Re: Mother with hd beinf abusuve and suicidal


Is your dad or other family or friends aware of this and are they around so that they can help you ? If you are really scared you can always call the police.

Does your mum or you have a rca regional care advisor that you could contact for some help ? Do you know you can call the 0151 331 5444 number to talk to someone from the HDA.

Sorry to hear about your positive test. I guess this may really be upsetting for your mum because she will know how unhappy you feel but not know how to express it except as anger. On top of the HD if you know what I mean.


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Old 18-09-14, 08:27 PM   #3
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Default Re: Mother with hd beinf abusuve and suicidal

Hello love

So sorry to read your tale, sounds like you have been doing a brilliant job, coping with your mum, and coming to terms with the news that your test was positive too. My heart goes out to you, but you really need some help for yourself, or you are going to have a break down. You say your mum has a support worker, so the local authorities are aware of the situation, what support are they giving you or other family memebers? Dolphins advise to call HDA is a good start and maybe the youth section maybe also good support for you, there are lots of people similar age coping with similar situations.

I know I have not been able to help you with any solutions, but at least you can come on here and vent your frustrations, and be able to talk to people that understand what it is like living with family members with HD.

Big hug to you xxxxxxxx
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Old 18-09-14, 09:17 PM   #4
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Default Re: Mother with hd beinf abusuve and suicidal

Such a very difficult situation you are in and making contact with the HDA to have a RCA to talk with is a good first step.
Caring for HD sufferers is very difficult and complicated. Unfortunately the suffer only sees things from their own angle and do not seem to care to much what impact their actions has on those around them.
There are some techniques that you can learn to help you handle your mum.
There is an American expert on caring for HD sufferers giving talks on this at the end of the month:-
Tuesday 30th September, London
Wednesday 1st October, Burnley
Thursday 2nd October, Chester
If you could get to any of these I am sure it would be a real benefit and you would meet other people going through similar problems as you are.
The staff at HQ can advise you 0151 331 5444
I hope you can make one of these sessions
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Old 18-09-14, 11:14 PM   #5
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Default Re: Mother with hd beinf abusuve and suicidal


All of the above is great advice. Is your mother being seen by a psychiatrist or neaurologist? The American expert, Jimmy Pollard wrote a brilliant book about HD, and one of the messages i took out of it is that there can be lots of mental health complications with HD, but that often they can be managed or treated. These behavioral problems are not inevitable and don't let anyone tell you that there is nothing that can be done just because your mother has HD.

Has the support worker experienced strange/frightening behaviour? Has her behaviour changed quite quickly? Is she eating properly? Is she fixated or very anxious about certain things? Is she having delusional thoughts (imaging voices or seeing things)? If you recognise some of the above actions then perhaps she is very depressed, or suffering from another mental health condition that can be treated.

When I came on this site a few months ago I was at my wits end - my wife had got aggressive towards her daughter, her mother, her support worker and a social worker (but that's perfectly understandable - !joke!). I think alot of people on this site have gone through similar. She is in a hospital at the moment and its seemed like the end of the world at the time. But I read some stories on this site about how other HD suffers had responded positively to treatment in hospital, and came to terms with the fact that this was for the best.

I am not suggesting this is the solution or the inevitable outcome in your mother's situation, but please don't be afraid of things if this is what comes to pass. I really hope the RCA/ HDYO can help, and I really hope that the local services help as well and take the situation seriously.

good luck
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Old 19-09-14, 12:19 AM   #6
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Default Re: Mother with hd beinf abusuve and suicidal

Hi Claire

After all the excellent advice above I’m going to get down to the nitty gritty.

First of all you must look after yourself – your own health and welfare. So, as everyone has suggested that means that you must, straightaway, make contact with your Regional Care Adviser, they cover the whole of England and Wales but not Scotland [] and are listed here:

If your mum’s support worker is a professional then it might be better to let her see your mum in bed. Many of us have the same issues with daytime sleeping. There are reasons that people with hd stay in bed:

1. is that because of the chorea and disorganised movement of body and limbs they have used up so many calories so they really can be exhausted both physically and mentally

2. anxiety is a major symptom of hd and it means that if there is an appointment or a meeting or even if someone is due to visit, the person with hd tries to find a way of “getting out of it”. The best way of getting out of something, as we all know from our schooldays, is to stay in bed.

I have often had things thrown at me by my son because I’ve stood up to his various types of "negative" behaviour. I try not to be confrontational now, though, as I know I’ll never win – just get uptight and angry. So, I walk away and a few minutes later start all over again.

You will have to coax and persuade your mum into doing the things that are necessary - and that’s not easy. My son had a hospital appointment yesterday with the Neurologist but he said that he’d had a rough night with little sleep and just didn’t feel up to going. We weren’t able to persuade him to come with us so I went along with his two support workers and we had a really good natter with the doc and sorted out a few things which my son might have disagreed with if he was there. But it was all in his best interests – and it was a good therapy session for us too.

My son doesn’t like the sight of blood so wouldn’t cut himself - but even so I have removed all knives, scissors and other sharp objects from the kitchen [most of them aren’t needed anyway]. If you haven’t done this already it’s a good thing to do a Risk Assessment. For example, what items in the home could be harmful? Would it be better to have plastic cutlery? There’s a whole load of things if you start thinking about it.

You have to be on her side - but not by her side - all the time.

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 19-09-14, 06:28 AM   #7
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Default Re: Mother with hd beinf abusuve and suicidal

Hi Claire,

Can't really add anything to what has already been said except well done to you for coping with all of this. It is very difficult and can be scary at times. Today is another day and I hope you have a better day.... I hope to that you have made contact with some professionals who can help.
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Old 19-09-14, 07:59 PM   #8
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Default Re: Mother with hd beinf abusuve and suicidal

Hi Claire

Hope you managed to talk to someone from the HDA

I just wanted to add to my message yesterday that I found it really difficult to spend a day looking after my mum immediately after I tested. Things did get a bit easier but I just could not have coped if I'd had to do it all the time. And my mum was not able to move about much by then so easier to look after and mostly even tempered as long as she had what she wanted.

So I was thinking maybe there would be someone at the genetic place where you tested that you trust that could be a help too for you. The suggestions to talk with Adam are really good. Please let us know how you get on and if things are calmer.

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