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.

Thanks everyone; sorry not to get back before. I have been at my Mum's all day and she doesn't have internet. I've read all your replies and will read them again because there is some really useful advice here.

I think my Mum does have enough savings to pay for at least some degree of outside care (although I have not been nosy enough to ask to see her bank statements and stuff). She is completely compos mentis, by the way... just physically frail from old age. She's also extremely hard of hearing and, unfortunately, very set in her ways. Her house is old, falling apart and doesn't have a downstairs bathroom or toilet.

I'm afraid there is definitely going to be considerable resistance to any suggestion of outside help, paid or otherwise. 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. She furiously rejected any suggestion of wearing an alarm, too. These suggestions made her very suspicious of us all, and she kept saying "I know what you're planning to do... put me in a home! Well I'm not signing anything!"

We have tried and tried to persuade her to ring for an ambulance when she has a fall, but every time she rings one of us instead and waits for us to come and make arrangements.

I really think the way forward here is, as many of you have suggested, to simply refuse to pick her up from hospital next time this happens unless some kind of care arrangements are made there and then. Unfortunately when in hospital she seems quite good at convincing doctors she is more well than she actually is. And whoever said she might be privately telling the doctors her daughters are happy to look after her... well, I strongly suspect you are on the money there! It's going to be really difficult when that happens, because she will hate us for it I know, and feel we have betrayed her in her old age.

Thanks again, and I'm going to reread your replies now.

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.

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.

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.

I know where you're coming from.

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

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.

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.

Thank you. My Mum has always acted and looked much younger than her years and she is extremely proud of that. I think that's why she finds it so difficult to accept that finally the days have arrived when she needs help, just like other old people.

Having said that, I don't think my Mum's refusal to have carers is the whole story this time. It was last time (when my Mum became very angry and obstructive), but this time as far as I'm aware nobody has even suggested it. It just seems that some of the medical staff really do think it's our responsibility as family to look after her. My sister rang my Mum's GP last week to tell her about her latest hospital admission and ask what we do about help. She says the GP replied "Well, you are her daughters..."

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.’

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.

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.

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.

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.

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.

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.

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.

We’ve had similar with dgrandma. She insisted she was fine living in her own after dhrandad passed. She really wasn’t. She fell and broke her leg. Ended up in hospital for about 4/5 months and is now in a care home (albeit a self contained apartment within a home complex).

She refused to let caters into her old house. Sent them away. Made sure that my uncle is on call all the time. She called Dm when she fell and expected her to be able to come immediately. We live an hours flight away and there are only 2 flights a day both of which Dm had missed.

Since being in the home she’s been hospitalised twice. She refuses to drink. Refuses to put her feet up (to help with swelling) refuses to take her medication. She ends up In hospital then dutifully tells the drs that it’s ok her daughter is coming to live with her. DMs heard this first hand from grandma. And also nurses etc have asked her if this is the case. The last time they were told by grandma that Dm had divorced df and was coming alone. She hasn’t.

I'm following this thread with interest as we are in a similar position with my mum. My situation is easier than yours OP because I do not work outside the home and I have been her main carer for many years. However her mobility has deteriorated this year and following a three week stay in hospital after major surgery she is virtually immobile. She lives in the granny annex in our garden. Our house was built with all the living accommodation on the first floor and although we have four separate entrance doors not one of them can be accessed by a wheelchair.

Like your mum she is very with it (albeit confused at times) and was insistent that she didn't need carers and "we" would manage.

I have applied for a Carer's Assessment and an Assessment of Needs but have been told there is an open ended wait for these - no idea when they might take place.

I had a very difficult conversation with the discharge nurse who said that although mum was entitled to a reablement package there were no carers available and I would have to take her home as she was. Fortunately I had help from a social worker attached to our GP surgery who insisted that bringing her home without the care package would be an unsafe discharge and she stayed another 3 nights until they could get the care package started.

I was told that mum could take herself to and from the toilet from the chair beside her bed in hospital, that she could dress and undress herself including her underwear, that she was as mobile as she had ever been.

Now she is home and is barely able to walk. Each trip to the toilet takes half an hour. I can't go out because she can not get to the toilet without me and after two weeks with a catheter she has not recovered full control of her bladder - if she needs to go she has to go there and then.

Like your mum she was strongly resistant to the idea of carers. For the first week after she came home someone stayed the night with her but now we have a lifeline so she can call me without needing to use the phone and we have a key safe so that the carers can let themselves in first thing in the morning. She is not happy with the arrangement and wants me there to let them in but I am holding out against that.

I am struggling so hard with all of this. I can not imagine how difficult it must be in your position. But if you can possibly get a reablement package from the hospital next time she is admitted you may well find there is other help available as a result. We have found that the reablement OT is amazing, much more helpful than any other therapist we have come across. She is full of ideas for making mum's life easier ranging from toilet frames and perching stools to a commode and new wheelchairs.

The advice I have been given is to say Yes to every offer of help even if you think you can cope. And the way I have sold it to my mum is that these things are not permanent, they are on loan until she is better. I doubt they will ever not be needed but for now mum is believing that her mobility will improve and she will eventually do away with the aids. Anything for a quiet life!

You say she values her independence; but in reality she does not have that - she just manages because you help her, not because she is independent.

Just as I wish I were strong enough to do all the care for my OH, but have had to accept that I cannot do it and need help; so you need to be clear with her - heaven knows it is hard, but you matter too and need to be clear with her.

Elphaba I specifically said that abandoning them in hospital in order to take a holiday wasn't reasonable. I'm just struggling to see why you offer reassurance that "it is never the case" that "some of the medical staff really do think it's our responsibility as family to look after her" ... except if the family are scheduled to be on holiday. I'm not suggesting they should stay in hospital, but you seemed to suggest that a family should be required to cancel their holiday rather than some sort of care package be arranged to allow the person to leave hospital.

Not at all MereDinto. We never assume/expect that families will provide basic care - if I had a pound for every time I had said to a family member, ‘Can I get a social worker to speak with you about getting some help so you can be a daughter/son/wife/husband instead of a carer?’ I would no longer have to do my job. That’s why I said upthread that not wanting to provide care is just as valid a reason for a care package as needing to maintaining employment. Think of a son not wanting to wash his elderly mother, for example, or vice versa.

What does happen more frequently than families dumping an elderly family member in A&E and scarpering, is an unexpected and necessary hospital admission overlapping with a planned holiday. Families are then in high dudgeon because we won’t keep said family member in just to enable them to go on holiday. That’s what I thought you were referring to.

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.

Sorry - ‘We offer care packages, for any basic tasks the patient is unable to do, to bridge the gap while the family is on holiday’ that final paragraph should start.

Also bear in mind some patients do not meet the criteria for care packages - if they can get themselves washed and dressed and do basic meals (which is all publicly-funded carers will ever do - they don’t have time to cook from scratch), they won’t get a care package offered. Even if they just need checking on every now and again, that has to be friends and family, or you pay for private carers to do check calls. Many of the holiday-making families just want their fully independent mum/dad/grandparent checked on while they’re on holiday, knowing there’s no one else to do it, and can’t understand why we won’t keep them in hospital or provided a health or state-funded visiting service. Carers arranged by health or social services must be providing assistance for a specific task which the patient is categorically unable to do, or is unsafe doing, for themselves upon discharge.

Good advice given by previous posters.

One issue I had was that my mother was telling healthcare professionals (without my knowledge) "no need - my daughter will do it". The only solution is to stand back and refuse.

I arrived at the hospital one day to find my mother sitting there, effectively discharged, saying that I was taking her home. That was pretty much the last straw. I ended up having to put her in a nursing home for 4 weeks and it cost me over three grand.

She now has help coming in several times a day, but it only happened when I put my foot down.

Good move Sicario, if horrifically expensive.

I’d be interested to know where some older people get this mindset that family will just do for them without considering the hardship on their families, despite offers and availability of help from elsewhere. I’m assuming it’s because their generation just didn’t have that option and either they did just look after their elderly parents and grandparents because there was nobody else to do it, and women who were fit enough to provide the care weren’t usually in paid employment, or the older generation before them simply didn’t live long enough to require constant care so they just don’t recognise the drudgery and wider implications of it.

Of course there’s pride/dignity in not wanting a stranger seeing you for intimate tasks, but why do some recognise that this is a burden they categorically don’t want to pass onto their children/families for their own pride, dignity and well-being, and some who just can’t/won’t?