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Old 05-02-09, 09:55 PM   #1
AndyM
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Default Domiciliary care

Hi all,

I just wanted to ask those of you who've used it, what experiences you've had with care in the home for anyone with HD, especially if you're a carer and therefore the care gives you a break from needing to care for your dependant 24/7, even if it's just a day off every so often, or if it allows you to continue working, for example.

I'm especially interested to know if the care is from a large care company/organisation, or a specialist one (are there any that specialise in HD, or ONLY care for HD sufferers?), and your positive/negative experiences of the organisation if you're willing to share.

Thanks in advance,

Andy
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Old 05-02-09, 10:17 PM   #2
dennisw
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Default Re: Domiciliary care

Andy,
I cannot comment on Hamshire as we are at opposite end of the country.
My brother-in-law is the HD suffer now in Resedential care. His wife is the carer and for three year was supported at home with a care plan, from local social services. They used a couple of local agencies. The carers varied from brilliant to sister-in-law banning them from the house. None had HD experience and each had a learning curve. He had 4 hours a day to give wife tikme to look after children and house chores. Both found it quite invasive, had to get used to strangers in the house. SSD tried to get her to take money and find own carers, current trendy policy, which she resisted as it just gave her more work which was the last thing she needed.
Carers mainly took him out, he would not let anyone besides his wife or me help with personal care.
Maybe in a more populated area like Hampshire you may find HD experience carers, but I have my doubts.
I am sure other will add their ten pennies worth.
Dennis
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Old 05-02-09, 11:30 PM   #3
myrna
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Default Re: Domiciliary care

Hi Andy,
I found its pretty much as Dennis has said. SS provide care but to be honest finding a good carer who will stay & be ideal wasn't easy.
We had one lady who stayed with us for 8 years. She showered & dressed Rik 5 mornings a week. We could have had evenings & weekends too & did try them but unfortunately, we couldn't find the 'right' people so gave up on that. The lady who did our mornings couldn't do any more hours.
It is hard having strangers your not fully comfortable with in your home so much of the time & finding the 'right' people can be difficult.

Eventually I took the Independent Living Fund (ILF) which paid money into my account so I could find our own carer/s for 20 hours a week. I found & paid a friend to do it & she turned out to be one of the best, but sadly had to leave when she found she was expecting.
As Rik had declined a fair bit by then, I chose not to train up any more strangers & employed my daughters instead. (You can employ family as long as they don't live in the same house).
I found having ILF on top of SS to be the best rather than just SS.

Rikki also went to a day centre 3 days a week which freed me up for 6 hours a day as well as gave her a break from me. We had up to 6 weeks respite a year as well.

I found the hours of care to be plenty....just wish I could have found some better carers at times.
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Old 06-02-09, 09:33 AM   #4
Toni
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Default Re: Domiciliary care

Hi Andy,

I care for my mum for 55 hours a week and get paid through the ILF and also the local council. They do not pay for all of it so I do alot of unpaid hours, my brother and sister are also employed by my mum and also have unpaid hours. My mum requires 24 hour care so this was the only way we could it. Employing someone else would not have worked for my mum because who would do it for free?!

The only way that my mum could have 24 hour care with our budget would be to employ two live-in carers who would do a week each. My mum hated that idea and did not want strangers looking after her, but I know of a few people who this works really well for. The SS still think we should do that as it would be cheaper for them. I undertand that but they have to think of what's best for my mum.

We have a great disability resource centre who help us with all the ILF stuff, and they can also find and interview carers with you. They do all the payroll and insurance side of things aswell.

My mum also has 4 weeks respite a year.

Toni x
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Old 08-02-09, 11:16 PM   #5
AndyM
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Default Re: Domiciliary care

Thanks for the replies so far. I should clarify that I am asking mainly for research purposes. My dad is in full-time care now, and I am aware that HD awareness has never been great amongst some professionals, let alone carers, and my Mum's experiences here in Hampshire have also varied in similar ways to those above. I am just interested to learn more about others' experiences up and down the country and possibly then using what I learn to do something about it. I know that's why the HDA are here(!) but I've also had an idea.

Any more replies would be most welcome.
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Old 09-02-09, 12:23 PM   #6
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Default Re: Domiciliary care

Hi Andy

My parents are in Hampshire. It's only since my Dad fractured his shoulder that he is at last getting some care for my Mum (she has had HD for about 12 years now). They are both in their 70s now. He has 3 x 30 minutes to help him with the very basics from a private care organisation.

She has been going to a day centre so thank goodness he does get some respite. Unfortunately because they have so little expertise with HD, they only seem to be able to cope with her for about an hour before he has to go back to help her stay settled. Still it is better than nothing.

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Old 10-02-09, 01:16 PM   #7
Gem
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Default Re: Domiciliary care

Hi Andy

I have very strong views and issues on care for HDp's - so i'll apologise now if i rant a bit here. (We live in Cambridgeshire.)

My brother is 27 and is in early-mid stages. He originally had carers visit him at home from a care agency funded by SSD. I cant say it was completely disasterous because we had one or two carers that were ok. But not one of them had even heard of HD, let alone know how to care for a sufferer - thats terrible. I seemed to spend more time at my brothers since the carers came in to sort out their mistakes.

My brother is now lives at a residential home run by a large healthcare organisation. The organisation's brochures and website claim to specialise in HD thats why we decided that home would be most suitable plus they had another HD sufferer residing there. My brother has resided there for 9 months and whilst the carers are very kind and friendly and my brother is happy there - their complete lack of knowledge of HD is alarming. (Considering they claim to specialise) I recently had a meeting with the home manager and she openly admitted that none of the staff are trained to care for HD suffers but some of them are 'aware' of the disease. Our local RCA is now going in this month to train the staff. This is a positive step but once again I had to initiate it - surely the res home should of contacted the HDA?!?!

Anyway i will cease to rant....i could go on and on

Gem xx
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Old 10-02-09, 08:06 PM   #8
dennisw
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Default Re: Domiciliary care

Hi Gem,
Did you see on the main HDA web site, they are running carer training session later this year, maybe your brother's care home would send a senior carer who could then train others in the NH.
I experienced something similar when looking for care reasonably locally. Care homes that list Huntington's, when questioned maybe had had one resident over the years.
I feel quite fortunate that following a lot of lobbying a local provider has taken HD care very seriously, send staff to the few training sessions available. Has only been open since last June, steep learning curve, but have taken up the challenge. Have a very good unit leader who sets a great standard.
Dennis
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Old 11-02-09, 09:59 AM   #9
AndyM
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Default Re: Domiciliary care

Thanks again... only a few replies and yet all with similar issues.

I'm not really surprised but it helps confim my suspicions. I'm also looking into similar issues with care for those who suffer from other neurological conditions to see how widespread the issue is... I strongly suspect the problems are inversely proportional to the amount of people who suffer from each condition, which is understandable to a certain degree as demand will be higher the more people require care, therefore the more training is likely to be provided. But that doesn't help those of us affected by the more rare conditions, and I think that can be improved.

Keep the replies coming, but thanks again.
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Old 11-02-09, 12:48 PM   #10
Toni
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Default Re: Domiciliary care

Hi,

I have an NVQ level two in health and social care which I did about 4 years ago when I was working in a nursing home. Everyone who worked there had to do it. We didn't get any extra money for the qualification but we wouldn't be able to get any other job in that type of work without one.
I don't think that it helped at all with the work I was actually doing, and I had been there for a few years before.
I did do alot of training courses through the nursing home on all sorts of different illnesses including HD, the nursing home I worked in was really good at keeping us up to date on all the diseases suffered by the residents in our care.

Alot of the carers I worked with had been caring for many years and they didn't feel they should have to complete an NVQ just for the certificate as they had all the experiance already.

Now that I care for my mum I still attend training courses that relate to what I have to do for my mum so I can continue to meet her needs and care for her properly, but they are not mandatory, I choose to do them.

Toni x
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