Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > General HD topics

General HD topics Open forum for all other issues concerning Huntington’s disease

Reply
 
Thread Tools Display Modes
Old 08-09-13, 10:07 AM   #11
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by Gillywig View Post
Hi,

I have been in exactly the same position as you and, unfortunately, the only way I could get my partner to accept help was refusing to take him home from hospital/respite until he did.

I work full time (god knows how I do it at times) but, like you, I enjoy my job and it's my sanity. My partner used to chase me down the street in the morning when I would try to get to work, hit me and punch me and then phone me constantly during the day (terrorising me!) threatening to trash to flat!

Social Services couldn't do much at the time as he refused any help whatsoever. Wouldn't even speak to them to discuss it! He was assessed as capable of making his own decisions so I had no choice but to put up with it.

Two years ago, after abusing me almost daily, he was admitted to hospital. He had a bad UTI which had made him psychotic. It took them six days to diagnose as they put everything down to HD and didn't bother doing any basic tests. By this time I refused to have him home. I had a bit of a breakdown and could barely walk never mind looking after him!!

To cut a long story short, he spent 5 months in respite while his care was sorted out. We went for Direct Payments and we employ our own carers. My partner calls them his friends rather than his carers. We interviewed them ourselves and they are people I think my partner would have been friends with had there been no HD.

He didn't want help but in the end it was either stay in a care home or give it a try. He desparately wanted home so we got him to sign a statement saying that he would comply!

I can honestly say that it was the best thing that could have happened to us. My partner has a great life. He goes fishing with his carers, pictures, walks in the countryside etc etc. Different from the angry abusive little man that would lie in his bed all day and then fly at me when I walked through the door. Don't get me wrong, it's not perfect and he still has his moments but, most of the time it's okay.

I would keep on at Social Services and explain your situation. What would happen if you weren't there to look after him? They would have to step in and do something. Sadly, with HD it usually takes crisis point before anyone actually listens to what us carers are saying.
Hi Gillywig
Thank you so much fo taking the time to reply. You have given me hope that it can work, and your message has made me feel more uplifted. Your husband as he was sounds just like mine, and to now see him happy going out with his carers must be such a relief for you.

I will keep on at the SS, its knowing how to turn to sometimes isn't.
Once again thank you
X
battersea is offline   Reply With Quote
Old 08-09-13, 10:13 AM   #12
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by Cupcake View Post
OMG, I am a scatter brain, also wanted to say, have also been down the route of him not wanting anyone in the house, another argument, where in the end I put my foot down and said it was not all about him and what he wanted, it was my home too, and now once every fortnight when I meet two friends for a drink, we alternate whose house to go to, it keeps the costs down, and I get an evening out, I am home by 9.45pm as we all have work the next day, but on my turn, it means I am not out as such, but we go in the dining room, have our chat and bottle of wine, and he does not even see them, as he is parked in his chair in the lounge, flicking the TV control. Sadly they do become stubborn and controlling, and I often wonder how much of it is HD, and how much they know what they
are doing.

That's it I think.

Thank you for all your replies, you have been through it your self, I am glad you appear to have people to ring etc, if need be and am glad that he is going to the Headway. Do enjoy your holiday, you deserve it.
It helps so much to know other people are in the same situation
X
battersea is offline   Reply With Quote
Old 08-09-13, 10:15 AM   #13
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by stephenbrown View Post
Hi
It sounds familiar to me too,i also wonder how much they know what they are doing,i was talking about it the other day with some friends and we thought there was little difference between BPD and this HD and the person thing? doesn't it boil down to the same difference ?
Many thanks for replying especially when you have so much going on yourself
X
battersea is offline   Reply With Quote
Old 08-09-13, 10:29 AM   #14
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by Dolphin View Post
Hi

I am pretty sure that the person who is ill has little control over the changes happening i.e. lack of drive, motivation, inability to plan, compulsive behaviours, and don't have the ability to judge either their own performance or have empathy for the effect on others.

It is like dealing with a big toddler coupled with the despair of knowing what they were like beforehand. And as memories can still be accessed cognitively I imagine it must be frustrating and depressing too for the HD patient. (Even if they are not psychotic). Hearing Jimmy Pollard speak a few years ago was an eye opener.

Anyway, good idea to involve outside carers well before reaching crisis point as happened with my parents. Don't forget social services have a duty of care to caree and carers.

I don't know how you sell the idea in positively but once my mum got used to particular carers she did seem to look forward to their visits. For my dad they were a lifeline.

I really hope that you enjoy your break Cupcake.


Dolphin
I am inclined to agree with you Dolphin, I don't think they have any control over all the changes going on and have no awareness of how they are being. My husband has no idea of the impact what is going on for him, effects me. Which is completely alien to the loving man he was. Apart from the actual changes that are causing their behaviour, to physically get through a day with all thats going on, the concentration and time needed to complete the simplest of tasks such a eating no wonder they can only think of them selves. I believe still remembering what they were only leads to further anger and frustration. Breaks my heart sometimes.

I will perservere with the carer idea, its so good to hear your Mum looks forward to them coming.
Thank you so much for replying
X
battersea is offline   Reply With Quote
Old 09-09-13, 09:44 AM   #15
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: How to introduce a carer

Hi,

I have been trying to think about why my partner changed and decided to accept help and I think a part of this was that it was the Social Workers who sat with him, were very firm with him and explained in no uncertain terms that he had a nice home, a partner who loved him and could still have a life BUT, in order for this to happen he must let people help him or we would be separated with him living in a care home. I believe he made his own choice and did have the control to choose which path he went down. If I had tried to tell him all that he would have gone ballistic at me.
When he used to ask me to take him home from respite I used to tell him it wasn't my decision and it was all out of my hands. The Social Workers called the shots now and there was nothing I could do. He tends to play up with me more if he thinks I can change things!
Gillywig is offline   Reply With Quote
Old 09-09-13, 09:49 AM   #16
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: How to introduce a carer

PS. I have had some leave over the last few weeks and my partner actually asked me when his carers were coming back as he was bored of me!!! Most people would have been upset at that but I was well chuffed!!!
Gillywig is offline   Reply With Quote
Old 09-09-13, 02:42 PM   #17
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by jacqueline View Post
Everybody has their stories and what it boils down to in the end is this awful disease HD (rare!!!!!...I don't think so)

I remember ringing my RCA for the first time nearly six years ago and I was heartbroken and just couldn't stop crying and she told me then that HD is a very selfish disease. I think HD is a body snatcher. It takes the beautiful people we knew and put a spoiled and wilful child in its place.

From my ex hubby still managing quite well at home to my son in residential it is the same story.
The people we knew are not the same anymore.

I told my granddaughter that I could manage Daemion, her dad, at home as he is now in residential but she said that we all know full well that he wont stay as he is now because he wont take his meds immediately. And that is where the problems start all over again.

There is help out there if you are one of the lucky ones but the NHS is terrible in its management. Especially in the mental health section.
The right hand doesn't know what the left is doing.

My friend works as a carer who picks people up and takes them out for the day. One of the people she cares for still lives in their own house and has carers 24 hours a day and that person is doubly incontinent and cant speak or feed themselves and is hoist cared for. I am amazed at that but it is very true. Plus that person lives on their own too.

Dolphin you are so right about Jimmy Pollard. He is brilliant. I saw him in Wales about 4 years ago. Where did you see him? He is going to Ireland and Scotland very soon. They are the lucky ones to get him. I keep messaging him to see when he is due back near us. He says that Cath Stanley off HDA does keep asking him.
Thank you so much Jacqueline, it is so true what you say about HD being a body snatcher. I so ofetn feel I am living with a big toddler, a very grumpy one at that.

I haven't read Jimmy Pollard but hear very positive things about him, I will have to look out for him. That is quite amazing about that person who is still able to live at home. Great believer in where there's a will there's a way, but where HD is concerned it is inclined to take a VERY long time with lots of
messing around etc etc

Hope you are Ok
X
battersea is offline   Reply With Quote
Old 09-09-13, 02:44 PM   #18
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by Gillywig View Post
Hi,

I have been trying to think about why my partner changed and decided to accept help and I think a part of this was that it was the Social Workers who sat with him, were very firm with him and explained in no uncertain terms that he had a nice home, a partner who loved him and could still have a life BUT, in order for this to happen he must let people help him or we would be separated with him living in a care home. I believe he made his own choice and did have the control to choose which path he went down. If I had tried to tell him all that he would have gone ballistic at me.
When he used to ask me to take him home from respite I used to tell him it wasn't my decision and it was all out of my hands. The Social Workers called the shots now and there was nothing I could do. He tends to play up with me more if he thinks I can change things!
Think there is a lot of truth in what you are saying about someone else doing the telling. M would go ballistic too if I mentioned it, but the appreoach your SW took sounds excellent and obviously do the trick
X
battersea is offline   Reply With Quote
Old 09-09-13, 02:45 PM   #19
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: How to introduce a carer

Quote:
Originally Posted by Gillywig View Post
PS. I have had some leave over the last few weeks and my partner actually asked me when his carers were coming back as he was bored of me!!! Most people would have been upset at that but I was well chuffed!!!
I LOVE IT, I, too would be over the moon
X
battersea is offline   Reply With Quote
Old 09-09-13, 10:26 PM   #20
Gillywig
Approved Member
 
Join Date: Jun 2013
Posts: 143
Default Re: How to introduce a carer

Me again!
Another idea that worked with Mark was, as he knew i had had a bit if a breakdown, we said that getting in carers was to help me. Although they would be his carers they were only really there coz i couldn't cope and was struggling.
At the end of the day its true in a way as care should be planned with both of you in mind. What would work for you as well as your husband. We are more important than the person with HD coz if we aren't supported then, whether they are given all the care under the sun, it won't work.
Care is for both of you. Maybe you could try that approach.
When our hours were increased Mark wasn't happy but was more accepting when i said that i needed more help due to my sore back. He was happier with that.
Gillywig is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:37 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA