When everyone assumes you are free to be a carer

Firstly I wonder if the attitude would be the same of you were the sons of this lady.
The other thing is that when people are in hospital and they need care the relatives are ushered out of the room and the hospital staff do what they need to. The patient is discharged and the family is expected to know how to do everything safely and hygienically without any training or knowledge. There is little help on how to get incontinence pads that actually work , how to dress and wash someone who cannot stand up without all the equipment the hospital has.

I thought Elphaba meant the people who actively try to get elderly relatives admitted to hospital rather than pay for care at holiday times. I heard this was quite common, from a contact working in a large hospital.

Refusing to take on care is different than actually trying to use a hospital bed for someone who doesn’t need it.

Why is that more unreasonable than simply standing back and refusing to take on any care? Yes, I agree abandoning them in A&E just before a holiday is not on, but if the holiday is arranged, the elder finds themself in hospital, isn't it fair for the family to say "we won't be able to take any responsibility for the next 2 weeks because we are away"? After all, they're unlikely to get another holiday for perhaps 10 years or more.

The beds in my hospital cost the NHS £600 PER DAY. We are not a care home and looking after an elderly person because the family need a break is an outrageous waste of money and prevents critically ill patients from being admitted.

If a family want their relative kept safe, fed and warm so they can have a much-needed break, they can pay to have them put into a home, for a fraction of the cost of a hospital bed, for the time they’re away. The NHS doesn’t exist to facilitate holidays.

Put it another way - your elderly mother has fallen and needs emergency surgery for a broken hip. But she’s in agony on a trolley in A&E instead because the orthopaedic ward is full, with at least two perfectly well patients taking up one of the beds she needs so their family can have a holiday. I doubt it seems quite so reasonable now.

After she had her first fall, we suggested the key box thing, but she flat out refused and was very angry with us that we had even mentioned it. What about an entryphone, so she doesn't need to actually go to the door to open it. Look into the technology - you can certainly get ones that you can communicate with via mobile phone, so it may be you could get one that could if necessary be opened by someone else (you) via mobile if your mum weren't able to give voice commands.

I’m afraid you are going to have to harsh, your mother is at the stage where her demands and stubbornness need overridden. No, they don't need over-riding. She is still an adult with capacity, not a toddler or a naughty puppy. But she needs to understand and accept the consequences, not put the burden on others.

The only time we think that about families is when they expect us to keep them in hospital so they can go away on holiday, or something completely unreasonable like that. Why is that more unreasonable than simply standing back and refusing to take on any care? Yes, I agree abandoning them in A&E just before a holiday is not on, but if the holiday is arranged, the elder finds themself in hospital, isn't it fair for the family to say "we won't be able to take any responsibility for the next 2 weeks because we are away"? After all, they're unlikely to get another holiday for perhaps 10 years or more.

The state have the duty of care.

That is not true, so saying that to hospital staff will only get their backs up.

The hospital has duty of care for a patient. Once the patient is discharged and they have been deemed/assumed to have full capacity, an adult’s duty of care is only for themselves. How they chose to be cared for, if this is needed, is entirely their own choice which is what makes this situation so bloody difficult.

Be very careful OP. My DM ended up on antidepressants and BP medication running round after my GM. In the end she stepped right back and my GM went into care. Quite rightly. What else are savings for at that age? I can't imagine ever being so selfish and demanding of my DC in the prime of their lives.
The state have the duty of care. Not family. You need to remind hospital staff of that fact and stop worrying what everyone, including your DM thinks of you. Her needs do not trump yours.

How old is your mum?

You need to call Adult Social Services, my dad was only in his 70s when he died (cancer) but it hit his mobility hard. We found Adult Care gave tips even though we were self funding.

I accept it was different in that he was okay with us calling them so no persuading needed. I don’t think we got the suggestion from the GP, I can’t remember where we got it tbh.

It does feel like no one knows what to do with elderly people but I do know a couple of people who have absolutely refused all involvement with care and the authorities do accept that. Obviously you need to make a choice though. I took keys and wallet off dad to be damn sure they couldn’t discharge without me or sis or mum Present, but if you want to disengage then you need to do the opposite and not go to the hospital and make sure your mum has her keys etc.

It just seems that some of the medical staff really do think it's our responsibility as family to look after her.

I can only reassure you that that is never the case. The only time we think that about families is when they expect us to keep them in hospital so they can go away on holiday, or something completely unreasonable like that. This is clearly not the case here.

Are you sure it wasn’t just the response of a GP weary of the merry-go-round of an older person refusing care? My reading and expansion of that could be, ‘You are her daughters...only you can have a word or make your own care arrangements. We can really do no more.’

Have you told your mother you’re at risk of losing your job?

She literally doesn’t call anyone nearer when stuff happens?

I think that’s really inconsiderate.

I would certainly try to have a rational discussion and explain you want to keep her out of a home.

If she has capacity then she can’t be refused going home from hospital without your support. I really feel for you. My sis and I have power of attorney for mum, I have access to her bank account so I can pay from her account when I get her shopping etc.

In addition, the argument we usually use with people who think care arrangements are just there to put them in a home is, ‘No, this is to keep you out of a home, because we don’t want you in one either.’

You can always threaten suggest that you will put her in a home for her own safety and to maintain your employment, but this will be a hollow threat as, once again, you can’t put her in a home without her agreement. Not a threat we would ever use as HCPs, but one I used as a daughter to my own mother, and one I’ve heard used effectively by other families.

I know where you're coming from.

If pressure is put on you keep saying like a manta ''I must not lose my job''.

You do NOT have to do this. I look after my OH who has a degenerative neurological illness, but SS recognised that I could not go it alone and have basically written me out of the picture as far as care assessment is concerned.

Refer to SSD; get an assessment and state clearly that you cannot be the one who does the care.

Then this really isn’t a case of HCPs ignoring you, OP. Not by any stretch. You can ask for all the care in the world and refuse to take her home from hospital all you like, if she refuses to have carers, and is of sound-enough mind to make that decision, she cannot be made to take them by anybody.

The best advice I can offer to you in this case, as someone who has done this as a job for a very (very) long time is to 1) take her to a GP appointment and tell her in words of one syllable in front of the doctor that you cannot provide her with care anymore and she must agree to a carer assessment (patients will often agree to anything in front of a doctor) or 2) next time she is in hospital, have the same conversation in front of a doctor or nurse so that she consents to a social worker referral. Get her to agree that you be contacted before the social worker sees your mum so that you can be there as well, otherwise the SW will turn up, be told by a compis mentus woman that she is fine and doesn’t need care, and no, you can’t phone my daughters to check, they’re fine, and you will be back to square one.

If she continues to resist, I assure you there is absolutely nothing more that health or social care workers can do.

Also be warned that if you get as far as getting her assessed and a care package set up, she may just refuse to admit the carers.

I’m afraid you are going to have to harsh, your mother is at the stage where her demands and stubbornness need overridden. You need to tell her she accepts help as you won’t be doing it mon-fri. Contact SS for a needs assessment and local hospital will have a REACH team, make it crystal clear there is no family help available and she is not to be discharged until a care plan is in place. Do not held to random by your mothers ridiculous behaviour, you’re her daughter not her skivvy.

Thank you long distance. That’s really useful info. X

We live in Bedfordshire and my df had carers come in twice a day, I think it cost around £440 a month, I could be wrong on the figures.
They didn’t want my df to go home, but he came home and dm looked after him as well as the carers for 4 years.

I’m really glad I’ve seen this read some of the points on here all very interesting.

My mother-in-law has lung cancer and myself or my husband and his sister have to go in every day for a couple of hours she lives half an hour away so it’s at least two hours a day gone and I also have dependent children.

I could start my own thread for it myself but does anyone know how much a private carer is to come to the house we don’t think she will qualify for help from the government and we want to keep her at home for as long as possible?

South East Hertfordshire if anyone locally knows prices

We got a carer to ensure she got up and dressed in the morning, and a second at night to ensure she ate an evening meal at these times

I suspect they wouldn't do this if you were a younger man in a business suit.
There are still so many sexist bullshit assumptions that female (esp older female) = carer, not taxpaying worker.

Absolute bollocks. I’m an OT working in an acute hospital and at the slightest suggestion that family are unable to provide care, for ANY reason including ‘we don’t want to’ which is PERFECTLY valid, we do all we can to get appropriate care and support/adaptations in place.

However, as I said upthread, if a patient refuses carers other than family, and we will encourage them as much as we possibly can to consider otherwise, there is not a thing we can do. Still waiting for OP to come back and say whether this is the case. If her mum has been refusing care, and has the capacity to make this decision, the HCPs ‘not listening’ and suggesting family pop in occasionally may have been left with no other option other than to give feeble advice, which they probably know to be unsustainable, but have no other choice but to give.

Did she or her husband serve in the armed forces? even if just wartime service, If either did, contact SSAFA (soldiers, sailors, air force families association). If either of them served even one day then SSAFA will help.
They are not a charity that has money to hand out, but are experts at putting together all charities and agencies that she could be entitled to help from. They also used to have convalescence homes (not sure if they still do). But they are really caring and helpful and it only needs a phone call to get started.

Agree with all the advice given above. The default position will always be the assumption that you will do the caring if you show up at the hospital. Have been through similar with DM. After DF died I rang her local social care team and said she needed an urgent assessment as DF (her carer) had died suddenly. She didn't really want carers ( and they'd both resisted in the past, insisting they could manage) but she had no choice as none of us were near enough to do it. I read the SC assessment which actually read ' family supportive but unable to provide care.' We did the shopping (internet) and visited at weekends and a kindly neighbour kept an eye and held a door key as the emergency contact for DMs fall/help alarm. A care package was provided and she was awarded full attendance allowance which covered the cost ( in Wales where care costs are capped).

Hi, some good advice already here. I work in a Rapid Response service, we are a team of nurses, physios and OTs and our remit is to prevent elderly people going into hospital and to facilitate their discharge afterwards for a few days. We see people at home between 1-4 times a day for up to a week, we also liase with social services if we think the patient has a longer term care need vs just needing a bit of support to get over their illness. Your scenario with your mother is exactly the kind of patient we see on our caseloads. Might be worth exploring with her GP whether this service exists in your area. Sometimes called "intermediate care" or urgent community nursing service. Its not the same as district nursing services. I know not all areas have it though but worth exploring. In her situation, the whole hospital admission and associated deconditioning and other risks of admission could potentially be avoided if she had rapid response input at home (provided not injured from the fall or acutely medically unwell, of course). Good luck.

You need to make it clear to the hospital she lives alone and has no family support locally and needs assessed to ensure she is safe to go home alone before discharge, tell them you want to be at that assessment (if you can) or discuss the outcome over the phone. Do not offer to stay with her, tell them she is alone and wont cope. Don't feel embarrassed or guilty about saying it.

Do you and your sister have power of attorney for her, if not get that asap so you can both independently discuss her care with her dr.

If she cant leave her bed for several weeks after discharge she should probably be in a convalescence hospital (if there is still such a thing for rehabilitation, my gran was regularly in one in her later years and a friends dad was in one for weeks after a mild stroke) until she is back on her feet and ready for going home with a care package.