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UK legal, insurance, employment, benefits, statutory services Advice offered by HDA Moderators relates to current UK law or guidelines

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Old 22-07-08, 08:18 AM   #1
amanda.pod
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Default Feeling helpless

Hi everybody

It doesn't seem two minutes since i last posted but i think that was in April. Things went from bad to worse with my stepfathers aggression, culminating in him being arrested several times. Sometimes with sympathy more often without. I felt so helpless watching him unravel, as his life spiralled out of control.

He was approached and charged with being drunk and disordley when of course he wasn't, can't say i blamed him for getting upset at that one! He was always released the next day without charge.

Well things have now moved on dramatically. I can't believe how this awful condition can move so fast. In the space of a weekend, he changed completely. The aggression is gone, he can barely walk, his speech is barely understandable, eating is hard, need i go on.

And all i can see is the fear in his eyes.

I thought i could cope with this but its hit me really hard today, my mum is struggling to cope but manages because she wants to/has to.

Just needed to write something where i know everybody understands what going on - friends sympathise but only people who have been touched by HD know what it is like.

I just don't know what to do.

X Amanda
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Old 22-07-08, 08:45 AM   #2
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Default Re: Feeling helpless

Thinking of you at this time.


Would it help if I share my experiences of the HD 'drive'?
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Old 22-07-08, 08:52 AM   #3
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Default Re: Feeling helpless

Hi Amanda

Just thought I would let you know I live near to Huddersfield so if you ever feel a coffee and a chat would help let me know and we can arrange something.

My sibling has HD though is either unawares or in denial . It is hearbreaking to watch and for much of the time you are helpless which is part ofthe stress.

Please let me know if I can be any help.


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Old 22-07-08, 09:19 AM   #4
myrna
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Default Re: Feeling helpless

Hi Amanda,

Does your step father carry some kind of HD ID? Something that says he has huntington's & isn't drunk. If not I would check out to see if you can get him one. It might help if those times arise again. Call HDA & see if they have something available.

As for the sudden changes in him...is he on medication? Has it been changed in anyway? If not then I wonder if its the trauma of being arrested.
I found with Rikki that trauma did speed up progression & would always cause a decline in her. Though of course, declines do happen naturally but I think if its sudden & largly noticable & not gradual there could be some reason for it. Just a thought.

I think we all have those times where we seem to be coping well & then suddenly 'bang'...it hits hard. It is hard to see the ones we love & care about go through what they do.

Sending you a hug & hoping you'll feel lifted soon.
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Old 22-07-08, 10:48 AM   #5
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Default Re: Feeling helpless

HDA do have card he can carry with him
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Old 29-07-08, 10:36 AM   #6
amanda.pod
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Default Re: Feeling helpless

Thanks for your replies everybody.

Yes he has had a change of medication but i don't think thats the whole problem, i think the trigger this time was going into hospital when we thought he'd had a stroke. It took four days to get him there as he refused point blank to go in an ambulance. Nothing showed up on scans but he rapidly declined after that so i think that some major changes must have happened in his brain.

Thankfully social services are now coming to help morning and evening so this should help my mum a lot. Me and my sister went and changed all the bedroom round to provide more room as he now has a walker type frame with a seat on it.

Things seem to be settling down into a new kind of routine which i guess is pretty much the pattern with HD. He does seem to be having trouble eating though as he is saying he just isn't hungry, weight is starting to really drop off him. His speech is really bad as well which i can tell is very frustrating for him.

Thanks for all your help x
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Old 29-07-08, 10:59 AM   #7
amanda.pod
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Default Re: Feeling helpless

Thanks Ashlee

I think speech therapy is next on the list - it seems to have taken ages to get people to get things moving! A team came out last week to assess mum's bungalow and they left the walker and a frame around the toilet. They should also at some point get a wheelchair but the house will obviously then need a ramp - its just so complicated and frustrating!

Mum has very little money so is unable to carry out any of these changes herself.

We're just hoping that things will improve for everyone when all these changes are implemented.

X Amanda
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Old 29-07-08, 11:57 AM   #8
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Default Re: Feeling helpless

Hi Amanda

I'm glad to hear that things are moving in the right direction ( at last ) for you and help is on hand now
thinking of you
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