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.

Trepidatious, this scenario is really tough💛but you and your sister can change things. You need to talk to the local health trust, make it clear that you are there as much as you can be but that your mum needs carers. You’ll have to fill in loads of forms but if your mum doesn’t have much money left, the local authority will work with you to see that she’s taken care of. Just try. If your mum is loaded, it won’t work and you’ll have to take care of paying for her care yourself, with your sister. It’s a tough life, looking after an ailing parent, but you can do it with carers. 😘

So next time she is in hospital, you say the following keywords: “She lives alone and is not capable of caring for herself. She requires Enablement care until she is capable of looking after herself again. We will not accept her discharge without an adequate care package.” It’s much easier to get this sorted when they’re hospital than after they’re out. Enablement care is a special kind of care that is short-term and includes physio etc as well as carers, then after 4-6 weeks they assess ongoing care needs and decide what to do. And I would start with the senior nurses on the ward as soon as she is admitted: “I’d like to get a plan in place ASAP for when she goes home as lived alone and won’t be able to cope with these injuries so will need short term Enablement care at the very least.” If you are not listened to then before she is discharged lodge an immediate formal complaint with the Trust in writing, followed up by a phone call to the Trust complaints department.

You need to request a 'needs assessment'.

www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment?gclid=EAIaIQobChMI5NnM4Zm94wIVy7TtCh2QWAw9EAAYAiAAEgJoVPD_BwE

You can initiate it now or wait until your mother next has a hospital stay then insist that she can't be discharged without one. Stick to your guns that neither you or your sister can provide the care needed. It will be hard to do, I know, as you would never leave your mum in the lurch, but when she is in hospital this gives you the leverage to get the proper care in place.

Your mum should be able to get morning and night carers to help her get up / settle down for the day. Meals on meals can be initiated. She might be entitled to help with cleaning / shopping. All the things to help her stay independent for as long as possible.

In my experience the hospital will discharge their duty by the easiest means possible. If you show willing then they're happy to get the bed back. I don't blame the NHS for this, they're on their knees but sometimes you just need to shout a bit to get what you need.

Thanks everyone for your quick replies. It's really helpful.

My mum does have some savings, although I wouldn't describe her as loaded! We are very happy to do her shopping and cleaning ourselves, in fact we have already been doing this for years at weekends. Anything we can do for her at weekends is OK... it's just the work days situation that's impossible.

Getting her to accept help from anyone other than us might be another issue entirely, but I'm afraid it is going to be needed at some point. She likes being independent and we want to help her to be for as long as possible. At the moment we are desperately trying to interest her in moving from her house to a flat; we're dreading that her next fall will be on the stairs. She's lucky to have not broken anything yet given the fact that she has osteoporosis.

Thanks again!

Don't even say you can do the shopping/cleaning. That can be done by anyone. Get that included in the care package.

To be blunt things will only get more complicated. Save your energy for the things only you can do., primarily.
1)Being family, use your cleaning time to take her somewhere nice at the weekend OR sit with her with time to listen to her.
2)Helping her make health/financial decisions.

Be firm with not letting her saying no to carers. Its a big step for her but once she is used to the new routine it will be fine. Go for the doctor said approach or similar.

Absolutely what JontyDoggle37 has said.

You need to make them understand the situation whilst she's still in the hospital. It's so much harder once she's been discharged into the care of her family. Make it crystal clear that you will not provide any care. I know it sounds callous but it's the only way your mum will get the help she needs.

And her having a carer doesn't mean that you've ditched her - you can still visit her lots, call her, take her shopping, visit her if she in hospital etc. As much as you are able to do. Just don't say any of that to the hospital or you'll end up being her full-time carer.

Getting her to accept help from anyone other than us might be another issue entirely, but I'm afraid it is going to be needed at some point.

That sounds like she’s refusing a needs assessment then? If so, this isn’t a case of HCPs not listening. They’re not allowed to force an assessment on her if she declines it. Are you sure it isn’t your mum saying, ‘It’s fine, my daughters can look after me, thank you’ at appointments? If she has capacity and says this, there’s not a thing they can do. Are you able to take her to a GP appointment yourself? Quite often, sat in front of a doctor, with you saying, ‘No mum’ people can change their tune, and they can get the ball rolling on a care package.

caranx Shopping and cleaning are never included in care packages. Carers are for washing, dressing and heating up ready meals or making a sandwich and a drink. Families/neighbours are always expected to do shopping, and for cleaning you get handed a list of local agencies that you have to pay for like anyone else wanting a cleaner. It’s very much in the OP’s interest to show care services she can meet them part-way on this one.

We have my partner's 86 yr old mum living with us in her own bedsit. Much better than worrying about them when they live elsewhere. We both work part time, and up to now she is self caring, although cannot shop or clean and has poor mental health. We would have to visit her every day if she lived on her own and in fact she would become very needy and mental health would slide down if she lived alone.

We are very happy to do her shopping and cleaning ourselves, in fact we have already been doing this for years at weekends. Anything we can do for her at weekends is OK. I wouldn't say this to the hospital. They will take the message that you are willing to do a lot of care.

caranx is dead right about saving yourself for the things only you can do (although you would have to fund someone to shop and clean yourself).

You may have to make it clear to your Mum that you can't help during the week. And maybe get it in writing to the discharge team that even if Mum says "I'm OK my daughters will look after me" this is not the case, and you are not in a position to look after her.

Schooled by Mumsnet, I dropped phrases like "danger of early readmission" into the conversation, and that helped.

On a practical point, take her keys off her for safe keeping, and they can't simply dump her at home without you knowing about it.

What is the situation with funds? If it happens again then can your mum pay for carers?

Has she got grab rails round the house? Can downstairs be adapted so she can sleep there and is there a bathroom? When I looked at carers for dad, some said they wouldn’t help with stairs - completely understood that but of course you need a downstairs loo for that to be feasible.

The first thing to do is to have a keysafe box attached to her house. Then trusted carers can be given the code and let themselves in. Your Mum needs to agree to this of course.

We've just done this. MIL has been in hospital for a week after a fall at home and a night on the floor as a result. At every interaction with nursing staff we have said clearly that she cannot go home because we cannot keep her safe. She has now been assessed as ready to be discharged and DH said it again this morning. The Discharge Co-ordinator just agreed with him and MIL will now be going for reablement some time at the beginning of next week, although we all know (except her) that this is going to be the first step on a journey to a care home.

Be clear and assertive in your communication OP

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.

Unfortunately you have to be quite forceful! When the hospital try to discharge her into your care you have to point blank refuse. No explanations, simply, no, that will not work. She lives alone and will be at risk if left alone on discharge.

If mum is currently at home now then phone social services and ask for an assessment, get the ball rolling because it can be a long process.

Hospitals are so desperate to get people out quickly I have seen some shocking things and lies told to justify them discharging people.

And as far as shopping and cleaning go, it isn't provided as standard in the LA I work in. But we have to provide it if there is no informal arrangements or funds to arrange privately. If there are options for your mum i would keep it under your hat that you can arrange something but push for the day to day care needs being met.

Yes went through this with my mum. You absolutely must flatly refuse to do anything - "I can't help out, I work and I don't live nearby - she needs an assessment" and just keep repeating. If you weaken at all they will do FA.

At 92 your really does need to be on SS radar anyway and she may go downhill sharply all at once. You need to make sure she has a regular care package.

As a PP has said, has she had a home assessment? If not, ask for that asap.

I have to say ultimately I found adult social services utterly useless and ended up hiring carers myself through an agency. They were great, my mum got the same two carers every day (one am and one pm) who were wonderful women and really sensible. They did a bit of personal care and a bit of housework and took mum to the supermarket too.

Mum went from flatly denying she needed any help to really enjoying their visits and chats which brought a bit of much needed variety into her life.

It was the carers who ultimately said to me very honestly after a couple of years that they did not think she could manage at home any more even with increased visits and it was time for her to go into a home. They were right.

At that point social services were still just writing her utterly pointless letters which she could not understand because she had advanced dementia (which they knew). They had managed a home assessment and fitted some aids, which were useful, but she was still on the list for a needs assessment (!)

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.

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.

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).

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.

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.

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’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 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.

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