Having been turned down for CHC 3 times we are now paying for 2 carers 3 times a day at present. Mostly due to Ian needing a hoist for all transfers and the resultant personal care that this means. The decision was made 1 hour first thing, 30 mins lunch time (reduced from 45 minutes by us) and 45 minutes at bed time. I agreed to increase this if a visit went over. My question is to others, is this the kind of arrangement they have agreed to and what do they do about the fact that quite a few of these visits take far less time? So we pay extra for going over but get no discount for short visits. Seems a bit one sided!
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Courgettegrower
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My Sue has carers similar in 4 times a day 7 days a week.
We also have set times for calls of 45 minutes to get up and bed with 30 minutes at other times.
We do not get charged with any overtimes and discounts for less, but we do pay for within 48 hour cancellation.
I would bring this up with the care company, but before look at alternative companies and their costs, but getting a good care company that the team do their job right and on time is worth extra.
So there's no help with care costs, do we run the risk of having to sell the house?? We are trying to save while we're still working but it won't be eny where near enough? I've not had to work about money til now. But as things progress, i cant afford escalating costs. Not sure i can cover the finances if i have to reduce or give up work. Feeling anxious reading your posts. 😔
Hi, money is a big worry.The local council should be able to support you both. Care costs are potentially covered by the council but this is means tested on the users income, not joint.
Get social services involved via the GP is the start of the process.
Get in touch with MSA trust as they have an experienced adviser who can help with all aspects of finance.
Social services will step in means testing savings and income but as far as I am aware not your home. Are you members of the MSA trust? Plenty of info there about this kind of worry plus an expert to advise you.
Sad to read your post, Ian needs a hoist to transfer which should tell them enough, what do you have to do to be eligible for CFC ?
You've paid in to the system, you have enough to cope with and now you have to spend your own savings !!
Then as you say the help you get is a bit one sided, and it was never going to be in your favour was it, giving you something else to sort out, as if you havent got enough to do already.
Our thoughts are with you & Ian, L has little or no mobility now and with the equipment we have we're just about managing without additional carers, the time may come where we need help.
Then we'll have to spend the savings that we've built up over the last 50 years, not to enjoy ourselves but like others with MSA just to keep us going.
We're in a very similar position with my Mum. Double handed care 4x a day. She also has to be hoisted so we are reliant on carers (my Dad has MS and uses a wheelchair so cannot help). A few things we have done to protect their savings: if you own your home change it to 50/50 ownership. You still both own your house equally but the government can only claim up to 50℅ owned by the care user. Regarding care, we were paying privately to begin with and it is extremely expensive. We got in touch with adult social care department of our local council and were very lucky to have an extremely helpful lady to got us started with help. We had a full assessment done for mum's care needs and the council took over providing care. We are still in the position of having to pay for Mum's care until she reaches the £23, 500 threshold BUT the council have reduced rates organised with the firms they use and this has meant the bill is a lot less each week. They choose the company but we're happy with the care and I'm sure if we had a problem they would work with us to change to a different provider. With regards to shorter visits, would it be worth having something extra for them 'to do' on those visits? Help with exercises/physio? Last thing, when the council look at a persons assets they will include 50℅ of any joint accounts even if the majority of money is yours - you will need to prove this or move your money so you protect your own savings. Good luck, the whole business of care is an added headache but an essential one...
Don't give up hope on CHC funding. Our neurologist contacted our local branch of Macmillan on our behalf who came in to see how they could help. Watched as I hoisted my husband in and out of the shower chair, showered and dressed him and then said leave it to us tomorrow. The following day two Macmillan nurses came to get him up, showered and dressed which took them 2 hours. They then applied for emergency CHC funding which was approved within 24 hours - 2 x carers for 2 hours in the morning and 1 hour in the evening. We were repeatedly offered more help but he didn't want it - hard enough to have carers tending to him twice a day.
Admittedly he was in a bad way. Zero mobility, unable to feed himself, difficulties chewing and swallowing, almost no speech nor ability to communicate, bowels shot as well as bladder. He died in June, 4 months after the carers started, 1 year after his diagnosis was confirmed as probable MSA and 18 months after it was first suggested.
Macmillan were amazing. They basically took over his care from the district nurses, moving him over to a syringe driver for his last couple of weeks and sending 3 different doctors round to assess him in what turned out to be his final week. Prior to his illness, we thought Macmillan just dealt with cancer but their remit is palliative and end of life care and they were wonderful.
This care sounds absolutely wonderful I don’t think as yet we are at the point that your husband was when Macmillan stepped in but it shows what can be done.
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