When everyone assumes you are free to be a carer

[Trepidatious]

What to do when hospital, GP and nurses all expect you to be available 24/7 to care for an elderly parent, but you just can't?

My mum has been lucky to enjoy a sprightly old age, but she's nearly 92 now and over the past few years has started having falls at home. They usually result in a few days stay in hospital for tests and observation, then she is discharged "into the care of her family" with severe back pain (from bruising) and, usually, awful bowel problems resulting from the pain killers given.

Once home she cannot look after herself, in fact can barely leave her bed for several weeks. When this happens my sister and I have to take impromptu absence from work to take turns look after my mum. We both live at least an hour away by public transport and neither of us drive.

I am desperate to hang onto my job – if I lose it I might never get another one at my age (59) – and am excruciatingly aware of dropping my team in it when I have to suddenly disappear like this. We had a wave of redundancies recently and I escaped this time. I don't want to make myself a target next time by becoming an unreliable employee.

But... everyone at the hospital, her GP, and the nurses simply will not listen when my sister and I say that we cannot be there all the time, every day. They talk to us as if we live just around the corner and don't go to work. "Come in and make her a cup of tea in the morning, then an hour later bring her breakfast in bed..." a list of all the things we have to do at various times of day. Nothing, but nothing, will make them acknowledge that we both live some distance away and work full time in jobs with a lot of responsibilities. We say this, but are just ignored.

What do other people do in this situation? Obviously I'm not going to leave my mum lying there on her own, in pain and hungry and thirsty, but I simply cannot afford to lose my job. I'm getting on myself and have problems of my own, and my job is my lifeline for both my mental health and my future financial security. I don't have kids so I won't have anyone to look after me when I am old.

What do other people do? The guilt of this is killing me, both the guilt of not being there for my mum and the guilt of letting down my work team.

I've told my kids that if I ever turn into a pain in the arse to just shove me under a bus.

We offer care packages, but such families want 24/7 care immediately following a period of illness. They tell us quite happily that they’ll move in with mum/dad for a short period on discharge, plus or minus a care package for extra support...but only if they get their holiday first. Happens ALL the time. I'm not surprised. If they're planning to take over the care of mum/dad this is the last holiday they'll get for a great many years. And not just a holiday. They've been run ragged dealing with the parent in hospital (even a brief one hour visit to pick up laundry etc may well have had a 3-4 hours travelling in addition, and that's without all the extra work trying to find out what's happening, what could happen, who one should deal with - you just have to look at this board to see what a steep learning curve there is for everyone) and are in need of respite before they settle in for the long haul. I don't think it's unreasonable for that to be enabled, although it's not the hospital's job to do so.

Would it be better if they simply said "sorry we're not available to move in on discharge" and not muddy the water?

One of the things I find hard about hospital, and I expect other people do too, is the speed at which decisions are made. As a patient it is disorientating - you're just beginning to get to grips with this unfamiliar environment, then someone says "we're moving you to X ward" - by which they mean suddenly at any time in the next 4 hours - and you have to start all over again in a new unfamiliar place. With an elderly parent, one day they're in hospital, and you're busy trying to work out how you can visit each day, do their washing, check their house, cancel their milk and their meals on wheels, then you get a phone call "they're discharging me today" and you have to learn a whole lot more stuff about care homes, rehabilitation, means testing, and advise your elderly person, without feeling you have time to think any of this through. By their very nature, hospitals work on a different time frame from the rest of us.

Sicario Yes, I think you've summed it up. Dementia is now the leading cause of death for women, it wasn't previously. So any period of care giving was relatively short (compared with the 10-20 years that you may have today), and free of the challenging behaviours of dementia.

And it's not so long that there wasn't any social care, and no support for having children, so the feeling was still embedded that you have children, and all the sacrifices that entails, so that you won't be "alone in your old age".

I've told my kids that if I ever turn into a pain in the arse to just shove me under a bus. Yeah, but that's not realistic, is it? Any help anyone gives you to manage your end (even just giving you a lift to Beachy Head) puts them at risk of a manslaughter charge at the least. My mum used to say "just lock me up in a back room" - the sentiment was great, but legally (let alone morally) we wouldn't have been able to do that.

Cultural norms and healthcare just haven't kept pace with the changes in life expectancy

I had a similar thing with my brother. Although he was not elderly, he was terminally ill with mental health and addiction problems. They suggested he came to live with me so I could care for him. Not on your nelly! I had to be very firm and say I would have nothing to do with his personal care. I might sound a bit mean, but I was running my own business, didn't even live close (so a different health authority) and he had his own flat anyway near the excellent hospital where he was being treated. There was a lot of guilt tripping on their part, but he did, after assessment, get all the personal care he needed.

My mum is very hard of hearing but refuses to wear her (very expensive) hearing aids.

I had help buttons installed, with a pendant and a bracelet to wear, but she refuses to wear them.

Her private carer is 10 pounds per hour - very nice lady, comes for 1-2 hours each morning for personal care, tea and chit chat. The other carers are through her GP who come in to check her bloods and so on.

I have no intention of getting old, have started downsizing already, and intend to take up lots of risky hobbies, possibly including recreational drugs and tombstoning.

I’m quite pleased at times that I have a chronic illness which shortens life expectancy by a few years. I’m not terminal, like, but I shouldn’t make terribly old bones for my DSs to have to deal with.

Whosorrynow I think it has more to do with the push to get people out of hospitals for pretty much anything. Only, the way the Tories have done this is by cutting hospital beds rather than investing properly in community services, so people are kept in for the least possible time (if they’re kept in at all) with the barest minimum of care (if any) once at home. Or, ideally as far as their public purse is concerned, in a care home whereby the families have to stump up the money for pretty much everything. I had to spend four figures on the only kind of bed my mum could use when she went into a home. She used it for...three weeks maybe? She died suddenly. She was theoretically ‘fully funded’ but I still got a several-hundred pound bill after she died. I donated the bed to the home so some other poor family wouldn’t have the same expense. It would have cost me more to move it out of there anyway and I would never have got back what I paid for it.

We understand the need for holidays, Mere, truly we do. But our options for enabling a holiday for the family are to offer sporadic home care if the patient is eligible for it or to advise temporary placement at cost to the family if the patient does not qualify for care. There are not the funds or the bodies to provide anything more and keeping a medically well person in hospital is financially irresponsible, blocks a bed for critically ill patient and puts the person at risk of hospital acquired infections, none of which the families who want a holiday ever really seem to appreciate.

possibly including recreational drugs
hell to the yes break out the dmt and shrooms:o

Cultural norms and healthcare just haven't kept pace with the changes in life expectancy Well put.

and intend to take up lots of risky hobbies, possibly including recreational drugs and tombstoning Having reached the age and state of health when I need to actually start with the risky hobbies, I find my subconscious still won't let me take risks.

Elphaba I don't think you and I are far apart in our thinking. I was reading the first post I responded to as suggesting holidays were frivolous and unnecessary, and they're not. And I was looking at the case of someone who would qualify for care, not someone perfectly capable of coping after a fashion, with the family just after "peace of mind". There's lots of ways of managing that, ranging from daily text or email to say "I'm OK" to security camera/motion sensor attached to mobile phone.

ElphabaTheGreen, I have noticed this with some elderly people. It like they expect their families especially their daughter or daughters to put their lives on hold to look after them. Its like well I bought you up so I will have someone to care for me in my old age. I have seen this due a few friends dealing with elderly parents with health issues, poor hearing/sight, mobility issues and altizherms.
I have also seen elderly people become extremely selfish and mean as they got older. Some elderly people are well off but hate to spend their money making their final few years as comfortable as possible. Rather than spend money on careers, a cleaner to keep a house tidy or do laundry and the odd taxi to get to a hospital appointment they just expect their adult children to do these things or act like a unpaid taxi service. Also some elderly people refuse to accept that they are not as fit or as able as they once were. They think they can manage but the reality is if their daughter was not their doing things they would be going into a nursing home.
The reality is that we are living longer due to medical intervention including drugs, heart operations, cancer treatment ect.

As a society we need to figure out a better system for looking after the elderly rather than just say to someone you can mind your elderly parents.
The lady here who's here at 59 and working full time can't leave her job to mind her elderly mother because long term it going to make her own future worse off. You need to say to your mother's doctor and the hospital that your mother is not able to live on her own without help and your working full time. I know your mother might not be to happy having careers but say it's the only option unless she wants to go to a nursing home.

Ilady, something you said there really rang true. Last time this happened (my mum discharged from hospital to recover from a fall at home), my mum said to my sister "I looked after you when you were babies, and now you have to look after me now I'm old"!

Part of the problem with my mum is that between falls/hospitalisations and slow recoveries, she does eventually make a decent recovery and is once again capable of washing and dressing herself, making herself a cup of tea, putting a ready meal on, even pottering about in the garden. If anyone came to assess her at such times, they would conclude that she was managing fine on her own with help from us at weekends. We have decided that the best way forward is to wait for the next fall – and there will be a next fall – and simply tell the hospital staff we cannot bring her home because we know how the next few weeks are going to pan out.

Something else you said, Ilady, about wondering why so many elderly people expect their children to put their lives on hold for them. I truly think that some old people go back into a kind of toddler mode, where they simply cannot comprehend anything other than their own immediate needs. I don't think they are deliberately being selfish, they just seem to lose the ability to imagine the bits of other people's lives that don't involve them.

Reablement services (free care plus OT/physio at home for up to six weeks) exist for that exact circumstance, KettleOn because the deconditioning effect of a fall or infection in a normally independent elderly person is well-recognised.

It’s getting the elderly person to accept it, however, if they are entrenched in that idea that it’s the job of their children to do it...

If she wants to stay living independently at home she needs to start accepting some paid for help. Put it bluntly to her: if she carries on falling like this eventually she is going to do some serious damage to herself and will end up in a care home. Accepting a couple of visits from carers every day will mean she stays independent.

@madeyemoodsymum here in Surrey private care costs around £25 per hour, but just call up some agencies - check their CQC ratings, ask around if possible. Also check your local community cancer/palliative care nurses or hospice for recommendations. Your local council will probably have an online financial assessment tool, but if your PIL have over £23K in savings (not including house) they will need to contribute to their care.

We didn't go for a "qualified" carer - no agency or anything. Instead we asked around and found a lovely local lady who would do a bit of cleaning and housekeeping for other clients. She was very happy to have the extra and it has worked out very well. Also I was wrong about the rate - not 10 per hour but 15.

toddler mode
I think you are spot on here!
apparently functioning and rational adults but with the heart of a toddler, this creates a total head fuck for the adult children
think about it, you have been programmed from an early age to honour and obey this person and they have finally tuned skills which enable them to manipulate you, press all your buttons etc, gradually they become weird and selfish but there is no sign of any cognitive impairment, you find yourself feeling compelled to obey this person who thinks only of their own needs and dismisses even ridicules your own suffering
the adult-child soon feels they need to escape if they are to survive but the little old person knows exactly how to make them feel guilty, this is psychologically extremely damaging for the adult children of the elderly person

I don't think most difficult elderly relatives are doing it deliberately to be awkward maybe they are finding it hard to adjust to their now frail situation as that is us in a few years time. Doesn't make it any easier though. At least with a toddler you can pick them up and give them a bath and other ways of bringing them round to your point of view. And it is easy to take them to places to keep them happy.
Our problem was when MIL was in hospital and BIL who rarely visited decided her care was not good enough and said we (???????) could look after her at home. Fortunately ward sister contacted us first and she eventually went to rehab before coming home.