Healthy living Blog
Carer Diary
July 16: the waiting game
One by one, Marianne Talbot and her relatives are dropping like flies, while they wait for a final funding decision and a bed to come free for her mother at the specialist dementia nursing home
I like to be doing things. I can’t bear waiting. But at the moment waiting is the name of the game.
Funding is one thing we’re waiting for. Mum apparently has a good chance of getting 100% NHS funding. If she gets it her only contribution to her own care will be the £130 a week she has been assessed as capable of affording from her state pension and her miniscule widow’s pension. If she doesn’t get 100% funding she’ll have to go into a cheaper home. Or the family will have to ‘top up’ her contribution.
Clearly the funding decision is an important one. I provided all the financial and other information months ago. No idea why it is taking so long.
But it’s not as frustrating as it might be because we are also waiting for a bed. The home we’re after, specialising in advanced dementia, has just had a new twenty-bed wing built. You’d think that means twenty available beds wouldn’t you?
That shows how little you know!
The twenty beds cannot be allocated until they have been ‘registered’. This, apparently, might take four months. FOUR MONTHS?? How can registering twenty desperately needed beds take four months? Are there hundreds of other new beds waiting to be registered? I doubt it. In the meantime twenty carers – and their families - are at their wits’ end.
When I last spoke to our care manager mum was classified as ‘in crisis’. This puts her near the top of the list.
But mum was in crisis because I was in crisis. Mum is now with my brother and his wife. I am no longer in crisis. Does this mean that mum may be trumped by someone else? I wonder which crisis will result in mum’s actually getting into a home? How ‘crisis-like’ must a crisis be before something is done?
That there will soon be another crisis is obvious. My sister, who was travelling round the family with mum, has had to go home suffering from stress. My brother and his wife, in their late sixties, are not in the best of health. My sister-in-law in particular has dangerously high blood pressure. Looking after mum is not going to help that. My aunt and uncle, in their late seventies, managed only ten days, thanks to my aunt’s arthritis.
And although I am no longer the sobbing wreck of three weeks ago I have reached the end of the road. Mum cannot come back to me. I wanted to see mum through to her death. But I can’t. End of story.
So mum might not herself be in crisis, but those around her are dropping like flies.
More from Marianne
- Keeping Mum: Marianne Talbot's archive of blogs about caring for her mother who has Alzheimer's disease
- Coping with caring: Marianne Talbot's top tips
- Give us a break: why R&R helps make you a better carer
- Video: watch Marianne Talbot and Emma Soames talk about the reality of caring
Saga and caring
- Visit our carers' section
- Saga Respite for Carers Trust
- Saga Long Term Care Funding Advice
- Chat to other carers at Saga Zone
Useful contacts for carers
Reader comments
It's the PCT team that take so long to decide on the 100% funding. I assume you refer to Continuing Care under the NHS as opposed to Social Services Care fund? Our Mum was in hospital and suffered terribly for the 12 weeks she was in there until the hospital told us they could do no more for her and we were to place her in a Nursing Home. FINALLY after 6 weeks she received the Continuing Care. Rediculously imo, she has to be reassessed at least annualy to determine her need for continuing care. Along with Lewy Body Dementia she has Osteoporosis (SP) wouldn't you think she has enough to contend with? If they deam her no longer eligible for continuing care she may have to be moved!! This would be totaly detrimental to her health. Wishing you well and peace for your Mother.
Posted by: Dawn | 23/07/2008 09:40:02
WHAT A GREAT ARTICLE I CAN SEE AND FEEL EXACTLY WHAT SHE MEANS ALTHOUGH MY DAD IS NO WHERE AS BAD AS THAT POOR LADY WE ARE GETTING THER WE HAVE ONLY THIS WEEK BEEN TO SET UP LASTING POWER OF ATTORNY I ..SAY WE BUT MEAN ME AS MY BROTHER AND SISTER JUST NOD THEIR HEADS AND CARRY ON.THEY HAVE TROUBLE ACCEPTING WHAT IS HAPPENING TO DAD BUT ARE VERY QUICK TO CRITISISE,I DON,T WANT TO RANT ON I FIND IT REALY HARD TO ACCEPT THEIR ATTITUDE AS I AM MY DADS MAIN CARER .READING ABUOT OTHER PEOPLES CIRCUMSTANSES DOES HELP YOU FEEL LESS ON YOUR OWN THANKGOD I HAVE A VERY GOOD HUSBAND THANKYOU LYN
Posted by: lynann beynon | 22/07/2008 12:08:24
This is one of the best, most brilliant, pieces I've ever read! I so hope for Marianne that she gets her funding and placement through VERY soon, for, although my mum is only in the very early stages of either dementia or alzheimers, and still has her own flat (with the help of professional carers and a twice-weekly cleaner - apart from me and my brother & sister-in-law), she is fast becoming a drain on the family that we all feel ashamed of admitting to. Marianne's piece gave voice to the thousands who are in her position to a lesser or greater degree, but all tired and at the mercy of a system which can be so painfully slow, and arbitrary, one can be forgiven for wondering if all Britain's live in Britain! Hat's off to you, Marianne. I never knew there was a "carers blog" on the online Saga Magazine, but now I do, I'll keep coming back to see what's written next. Thanks to Saga, also, for hosting this important diary.
Posted by: Richard Hubbard | 21/07/2008 20:54:47
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