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Started by yumyum on May 8, 2014 5:27:54 AM
The Care Thread

Are you a carer for parents, spouse or friend? Do you have worries that you need to share or just want to vent about the whole shebang? Want to talk about the future and what sort of old person you might become? Well, then let this be your corner...

elderberry - 08 May 2014 06:50:05 (#1 of 11077)

okay, kicking off.

Sole carer for two parents, one with Dementia, one with Steroid myopathy. We live in the same house (I love the garden and there's lots of space for books)

I took early retirement a few years back hoping to do some research and writing in local studies type stuff. Then both of them started to deteriorate. The last two years have become dominated by the timetables of meals, medication and clean up. Weekly I have 21 hours care from the state system, 3 hours a week from the Alzheimer's society which I use to pile Ma and wheelchair into the car so she can see the wider world, and intermittent assistance from friends and neighbours.

Mostly it's bearable and on the whole I'm glad to be able to do it, but it gets knackering at times. I dread the 3.AM squawk from the baby monitor that means Something Is Wrong - usually something to do with Pa's catheter.

yumyum - 08 May 2014 08:35:19 (#2 of 11077)

Gosh, it must daunting at times. Do you get the 21 hours broken down as you wish each week, or is it a daily three?

esmeralda - 08 May 2014 08:40:19 (#3 of 11077)

Thanks for starting the thread, eld.

Does anyone know where to find advice about going into a care home? Could only find answers to people's (understandable) worries about the cost/losing their home/the remaining partner's right to stay in it etc. My aunt will pay for care - she accepts and can afford it. But what I cannot find is a checklist - like the ones for going on hols/moving house/when someone dies - of, say, tell the council you don't need to pay council tax, redirect post, switch off the electricity, claim attendance allowance(?). It seems the home offer nothing - I suppose if they, for example, recommended an accountant to advise her, that would be open to abuse.

And while Yum is talking to Eld (hello!) may I just mention what I call "the Data Protection Fucking Bastard Bollocks" which as everyone knows is a very elastic regulation preventing free exchange of useful information but not in any way inhibiting idle, spiteful or unhelpful gossip.

elderberry - 08 May 2014 08:46:50 (#4 of 11077)

Weekdays two hours in the morning to get both APs washed and dressed, half hour in the evening to get Ma into bed (I can manage Pa). Weekends only 1.5 hours in the morning, half in the evening as usual. Twice a week two hours in the middle of the day -that's wonderful as it gives me time to go for a walk or get out, and means there are two meals I don't have to prepare and persuade people to eat.

That's the theory anyway - it often means I do a supermarket shop and scramble back so I can give Pa a bladder wash-out (all fun and games round here).

I had a week's respite earlier this year, when they both went into a local nursing home - it seemed a good idea, but they sent Pa back so dehydrated that he had to have a catheter change within hours of getting home, and a week of mood-altering antibiotics for a nasty UTI, which took the gilt off the gingerbread.

I don't know how people cope who have decades of this.

elderberry - 08 May 2014 08:48:53 (#5 of 11077)

PS, I'm in Ireland so can't be of any help with the practicalities of the UK system - I'm constantly playing catch-up with ours.

esmeralda - 08 May 2014 08:49:41 (#6 of 11077)

I don't know how you cope after two years. Although I'm guessing that you had a good relationship with your parents to begin with?

esmeralda - 08 May 2014 08:50:59 (#7 of 11077)

Do you think (as an Irish friend of mine insists) that there is a greater expectation there for daughters - in particular - to take on the responsibility?

elderberry - 08 May 2014 08:54:57 (#8 of 11077)

Fairly good - Pa could be difficult* as he was (we realised in the 1990s when it started to be written about) ASD/autistic. Oddly, I think this may have made dementia less stressful for him, as he spent his entire life being baffled by a lot of what was going on around him, so what's new? He also spent a lot of time in hospital when young, so accepts nursing.

*He also had a few outbreaks of irrational rage as he entered the dementia - fairly typical I think. No he's very sunny. I could actually have done without the sunshine at 3.15 this morning -

Go back to sleep, it's the middle of the night

oh, is if? how funny


elderberry - 08 May 2014 09:00:16 (#9 of 11077)

Irish daughters - oh yes, it's part of the strong family structure (not a bad thing, though sons should not be let off the hook)but also an expectation that neighbours will be on call at all hours. I even had an ambulance co-ordinator ask me could neighbours help once when I'd rung 999* after Ma had a bad fall.

*I've only rung 999 3 times ever, I'm not one of those people who calls the emergency services because the cat's giving me a funny look, honest.

esmeralda - 08 May 2014 09:07:18 (#10 of 11077)

Nurses here also ask whether my mother's neighbours call in. I'm surprised that they are surprised (after all, they live in the same world) to learn that they do not.

Although my mum is rather unusual in that she loathes the whole human race (including, if not especially, herself and me) and so does not interact with any of them if she can help it.

elderberry - 08 May 2014 09:11:56 (#11 of 11077)

My nearest* neighbour is a man in his late 40s who until recently was caring for his elderly mother, aunt, uncle, and clinically depressed brother. He's now down to mother and brother only - but it isn't just women who get landed with responsibilities.

*one large field away, well out of calling range.

ps loathing the human race is understandable at times, but can set up a self-fulfilling circle. I've been told I 'always put the bright side out'. Oddly, I think I get more help that way - not that it's calculated, I just learned long ago that giving misery a foothold is dangerous.

yumyum - 08 May 2014 10:49:21 (#12 of 11077)

I had a week's respite earlier this year

I know of situations where if the main carer says they cannot manage very well and thinks it is becoming too stressful on their nerves, then six weeks respite a year can be given. I wonder if it would be the same system in Ireland. If I were you I would do anything to get them in to respite for longer than a week. As for the dehydration, how awful that was. Did you follow it up or are you just too weary with the whole thing (totally understandable, truly).

I am sure you know all the links but, just on the tiniest chance that you don't,

Cavewoman - 08 May 2014 11:33:18 (#13 of 11077)

Hello all. Excellent thread - thanks for starting it, yum.

esmeralda - have you asked AgeUK for advice about choosing a care home? They're very good about clearing a way through the financial maze involved in being old and sorting out what one is entitled to. I'd have thought they'd almost certainly have advice about care homes.

I'm full-time carer for Caveman, who was diagnosed with Parkinson's Disease 14 years ago (4 months after we got married, ho ho ho!). Devon CC run an excellent scheme whereby I'm entitled to 3 hours' respite care a week at a reduced rate of £3 an hour, Devon picking up the rest of the cost. Maybe that's national, I don't know. Apart from that we're entitled to nothing as far as I can see, on grounds of income. When the time comes for him to go into residential care we won't get any financial support as we still own the house we lived in in Spain. We only still own it 'cos it's unsaleable in the current Spanish economic climate, but I suppose even if we did sell it that would take us over the capital assets limit for financial help. Caveman's also not entitled to attendance allowance as he hasn't lived in the UK for the past 2 years, therefore I can't claim Carer's Allowance - despite the fact that we both paid UK taxes on our pensions for the 9 years we lived in Spain and used none of the UK's infrastructure. We're lucky in that we both have good occupational pensions as well as our state pensions and it's fair that public funds should go to people who really need them. However, during those 9 years our UK tax contributions (higher rate in Caveman's case) didn't just help people who needed support but were squandered on buying armaments and killing Iraqi and Afghan civilians, so we're taking this one further through our MP.

My situation isn't nearly as bad as yours, elderberry. I can still whizz down to Sainsbury's leaving Caveman alone for half an hour, and his actual care needs aren't terribly onerous. He can often still shower and dress himself, although it takes ages and exhausts him, and he is increasingly dependent on me for stuff like that.

The worst thing, I find, is the loneliness. Caveman's retreating further and further into his own world, recently with incidents of dementia, and there's really no companionship at all. And I'm not free to do any social networking to compensate. God knows what I'd do without JtT and a couple of other forums!

There are further complications with his family (5 adult children) who are mostly appalling. I don't expect them to take any responsibility for his care, but a bit of support would be nice. One of them is OK and supportive of me by email when he remembers. The rest are downright abusive of me. I try not to let them "live rent-free in my head" but it can get a bit draining.

Anyway, I've got my Thursday respite time coming up and am off out to buy plants - always good therapy, I find!

esmeralda - 08 May 2014 11:33:26 (#14 of 11077)

You are right, eld and I wish I'd be brought up to "put the bright side out". Mr E's aunt - also 90 - lives like that: glass half full, no-one wants to talk to you if you're miserable, aren't all nurses wonderful, how lovely to hear from you etc. Her life is so much nicer than my mum's & aunt's ... and she gets far more help. Who doesn't want to help a funny, charming, grateful old lady? I'm trying to take note. But curmudgeonliness is genetically unavoidable, probably.

esmeralda - 08 May 2014 11:39:21 (#15 of 11077)

Cross-posted with you Cavewoman. Age UK are good - but more so on the financial side of fee-paying that you write about. My Aunt is already in a care home (trying it for size) and it sounds OK; wish I hadn't watched the recent Panorama programme on i-player though.

It is the whole family complication thing that really kicks in at this stage, isn't it? Plants are so much easier.

yumyum - 08 May 2014 11:53:29 (#16 of 11077)

I'd never really thought about the cheery aspect before but you know what, it's absolutely true. We've had a few ladies come into the home of late on respite, two are 100 and one is fantastic. You'd never know she was that age, she has lived in Nigeria for half her life, wears bright robes and big chunky necklaces and has a store of tales, really interesting ones. I stay sometimes out of choice, not because it's my job. The other woman - well, I won't say anything more than that she is the opposite type of person.

Cavewoman - 08 May 2014 11:54:06 (#17 of 11077)

They've been bloody awful ever since he was diagnosed, esmeralda. He was a very charismatic, powerful kind of guy with an extraordinary intellect and I don't think they've ever accepted the reality of a degenerative disease of the brain happening to their father and reducing him to the shuffling wreck that he'd inevitably become and is now. They refused to mention it for the first 5 years, then he had a psychotic breakdown caused by inappropriate meds, told them I was abusing him and they believed him and 7 years ago 3 of them helped him to escape from our house in Spain while I was away on Granny duty. He came back down to earth a few months later and tried to explain to them what had happened, but the 3 involved have refused to have anything to do with me since, and insist that he's suffering from Stockholm Syndrome! It's immensely painful for him and the stress only exacerbates his symptoms.

Care homes in Spain are fantastic and we used a local one a few times when I needed to get back to the UK. Upbeat, warm, friendly and, of course, much cheaper than here. But the norm there is for two residents to share a room and I couldn't bear the idea of subjecting Caveman to that lack of privacy just because he's old and ill. Nor should a room-mate be subjected to sharing with Caveman, who creates extreme chaos wherever he goes.

blaithin - 08 May 2014 11:54:53 (#18 of 11077)

Thanks for starting this thread, yumum.

My mother is 80 next month and lives alone, about a 20 minute drive from me. She has only recently begun to receive any support or care, following years of deteriorating living conditions and levels of personal care. Her acceptance of care was precipitated by a 6 week stay in hospital, for pneumonia, when a mild cognitive impairment was diagnosed.

She receives one hour in the morning and a half hour in the evening, seven days a week. The carers help her to wash, prepare breakfast, prompt meds and give the place a general tidy. They also pop to the local shops for the paper. The evening call is to check she's settled for the evening (but not necessarily in bed) and to ensure the house is locked up safely. I do her laundry, take cake of admin (paying bills, mainly) but she manages doctor and hospital appointments and trips to the shop alone, with the help of friendly local taxi drivers.

It has been a MASSIVE relief for The System to finally kick in and help her out. We had years and years of fights and estrangement as her conditions got worse and her hoarding became a really big problem. Now she is clean, well-fed and healthy and living independently. It will last as long as it lasts, but for now, I am very grateful.

yumyum - 08 May 2014 11:55:19 (#19 of 11077)

I think in some of the social services care homes people are expected to share these days.

Cavewoman - 08 May 2014 12:08:06 (#20 of 11077)

Are they? That's grim.

Good to hear you've had some of the burden taken away, blaithin. Although we're not entitled to any free care, I've been very impressed with the co-ordination between social services, the NHS and Parkinson'sUK. I was called in to our surgery for a carer's wellbeing check (BP, bloods, etc.) which is when I was told about the 3 hours' subsidised respite scheme. The thinking is that carers save the country billions of pounds a year, so it's in the country's interests to look after their health and support them. Again, I don't know whether that's national or just local, but it does make sense.

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