Hospital discharge, what if I can't cope?

[Haveyoubrushedyourteeth]

I don't even know where to start so apologies if this is rambling. My head is a mess.

Almost 3 months ago mum came to stay with us after a bad reaction to her covid booster. No medical professional had picked up on what im 99% certain is dementia, but as of last week her GP has agreed that theres something very wrong, going as far as to say that she lacks capacity currently so I can change her address/phone number to mine so i can deal with things on her behalf.

She's been on steroids since coming to us but in the last two weeks can't walk at all due to the swelling in her legs (her balance and spacial awareness wasn't great to start with)We bought a wheeled commode and have been using that for transfers. I've had to give up work due to her needing constant supervision, and shouting for me all night. We're fortunate to have an annex so it's only disturbing me, but it's above the garage with narrow stairs so unsuitable for her with no mobility.

After the GP ran blood tests I got a 2am phone call saying an ambulance was coming and she was being admitted to hospital due to very low sodium, which can cause confusion, lack of balance etc.

In hospital they've discovered blood clots in her heart and lungs, and believed she was suffering from steroid induced psychosis. She's been there a few days and is looking better, but mentally she's pretty much gone. She's shouting for me constantly, alternating between pleading and snarling about wanting to come home, telling people I'm her sister, she's been on holiday in China so could have malaria and trying to get out of bed etc (the other women in the ward are truly amazing and unbelievably kind with her) and yesterday the doctor finally agreed that she's got dementia not psychosis and the speed of her decline is down to the rapid changes in where she lives, the pain she was in etc.

Initially I was so relieved, now I'm terrified. I hadn't realised how bad she'd got until she was admitted. It took up every minute of my thoughts, I was as house bound as her and the fear of being given advice about lifting and handling and left to it again has made me sick to the stomach. My kids have seen things they shouldn't have as when she falls she's impossible to lift alone, and is unable to understand (or perhaps doesn't want to) that she has to help by putting her feet down.

Does anyone know if the hospital will just discharge her to me, or will they put a care plan in place, or something, anything in fact, that mean this isn't my life forever? I know that's so selfish, but she doesn't want anyone but me and the lack of sleep, constant responsibility, unpleasantness and dreadful guilt that my husband and kids never get to see me is overwhelming. I've always been a coper, and I'm not coping at all 😞

Didn't want to read and run, and don't have too much advice to give, but the phrase you need is 'unsafe discharge', and say no. And keep saying no. And say no some more after that. The hospital/SS will try to discharge your DM to your home because then she's your problem, but it sounds like her care needs are much too high for you to deal with, and she needs full time nursing/dementia care in a proper environment. She can't come to your house, and she can't go to her own home - keep saying that over and over.

If you post on the Cockroach Cafe thread www.mumsnet.com/talk/elderly_parents/5008671-cockroach-cafe-spring-2024 there are lots of people who have been in a similar situation and can offer advice.

It sounds like she needs to be discharged to a care or nursing home.

I would keep reiterating to the hospital that you cannot take her home, you’ve reached carer breakdown, and your home is no longer suitable for her needs.

www.alzheimers.org.uk/get-support/help-dementia-care/things-to-consider-after-person-dementia-leaves-hospital

You are most definately not being selfish.

If you can't cope you can't cope. That means you can't keep her safe at home. Start finding out who the hospital social worker is and contact them to look at other options than being sent home to you.

Yes ask for an appointment with the hospital discharge team/social worker and make it clear she won't be able to come back to your house as it would be unsafe. Stick to your guns! They may try to say she should come home to you then be assessed there, do not agree to that.

No, you keep on saying “I will not be her full time carer” and say that if they discharge her to her home it will be an unsafe discharge because she needs round the clock care. Discharge to your home is out of the question because it is unsuitable for her mobility.

You do not need to sacrifice yourself and your family life. Making yourself ill is no solution.

You can say no.

And you must say no. For your own sake, for your children's sake, but most of all for your mother's sake. You don't have a suitable living space for her, you don't have the training (in general demetia care or in manual handling - a wheeled commode is not a safe and suitable method of transfer, you could easily cause serious injury to both of you.) She needs specialist, trained care and a purpose built environment.

I wish posters wouldn't just suggest worried families repeat 'unsafe discharge' like that's some sort of solution to problems like this.

OP you sound at breakdown point, completely understandable and your mum clearly needs help you can't and shouldn't be expected to give on discharge.

Some things to think about - do you imagine her coming back to your house with carers coming in? Or returning to her property? If she is to return to her property will you need re-register her with her GP (as this is how you access local social services). Do you think about her going into a care or nursing home? If so does she have assets and will be self-funding (as if so you can start thinking about places that might be suitable now). Has she got a formal diagnosis of dementia now and if so has the hospital done a capacity assessment about if she can make her own choices about a discharge destination?

Sorry if that's a lot to think about but it's good to try and start making a plan about what you want and need the hospital discharge team to look at. Start by asking to meet with the physiotherapy/occupational therapy team on the ward to talk about the next steps and go from there.

I think the reason people recommend being so firm is because once you have a relative at home it can be exceptionally difficult to obtain the relevant care for them, whereas while the relative is in hospital the health and care system is incentivised to find a solution that works.

Because if your relative isn't in hospital and doesn't have carers then any option involves more state resources than are currently being expended. Whereas when your relative is in hospital, almost all options involve fewer state resources being expended.

So don't be pressured into saying yes.

You can’t be forced to be her carer. Meet the ward manager and therapy team. Insist that you are exhausted and cannot and will not look after her personal needs, get up with her in the house, be abused etc.
It sounds like she needs a nursing home trained in dementia care

It's fine to suggest not being pressured into saying yes to anything but you need to have an idea of what you do want/needs (and most people have never navigated this before reaching crisis point with a relative).

For the OP that looks like thinking about back to her house with carers vs mum back to her own house with carers vs placement (which may be self-funded depending on her mums finances). Plus thinking about her mums capacity to make these decisions herself.

I expect most of us on here advising the OP stays firm have navigated this.

I wish posters wouldn't just suggest worried families repeat 'unsafe discharge' like that's some sort of solution to problems like this.

Of course it isn’t a solution, but in my and others’ experience hospitals are (for several understandable reasons) keen to discharge with the flimsiest of support in place, and when the patient has declared that their daughter will look after them, despite the daughter having many other commitments and in some cases living many miles away. Using a recognisable term, whether you like it or not, signals that the daughter (and it usually is a daughter) is not going to acquiesce.

For the OP that looks like thinking about back to her house with carers vs mum back to her own house with carers vs placement (which may be self-funded depending on her mums finances). Plus thinking about her mums capacity to make these decisions herself.

From what the OP has said these are not options, at least not at the moment. She can’t go back to the OP’s home. She could go home with carers for 4x15 minute visits a day, which will be insufficient, and OP will have to do the bulk of the caring, which is not an option. And the GP’s opinion, the hospital Dr’s diagnosis, the description of symptoms, OP’s mum likely does not have capacity even to understand the options let alone make a decision. On the face of it the only option, if discharge is imminent, is a care home.

Having said all this, it does sound as though there are other underlying reasons for her mum’s physical condition which may still be treatable and may result in an improvement in both her physical health and cognitive abilities. So while she needs medical and nursing care she needs to be somewhere these are available, which may mean this hospital, another hospital or a nursing home.

We've (sister and I) just gone through similar with our mother. She was in hospital for 9 weeks and every week they told us she'd be discharged home on pathway 1, but then something else would crop up - low sodium, low BP, infection etc. Halfway through she was fitted with a pacemaker.

My sister and mother lived together and sister was becoming increasingly panicky about how she'd cope at home. Our mother is also pretty much immobile and can only shuffle a few steps leaning heavily on a zimmer. She also has signs of dementia - was repeatedly asking why her husband, who's been dead a year, hadn't visited her in hospital.

There was much talk from the hospital OT about creating a micro-environment in the front room (bed, chair, commode), and carers 4x a day, but we knew our mother, like yours, couldn't really be left alone for long periods so quick pop-ins by carers just wasn't going to be adequate.

In a panic, as she'd been moved to the Pathway Discharge Unit, we found a good local care home for her, they visited her at the hospital to assess her needs, and within 2 days she was resident there. She's self funding for now with her pensions and savings. When the savings run out the council will have to take over. Does your mother have pensions/assets etc.

It's obvious that you can't continue to care for her at home so you need to research care facilities near you and get it organised asap. You have to be really proactive. The hospital will want her out and are looking for the line of least resistance. Your mother should be on pathway 3 - discharge to a permanent care facility, but if you even entertain the idea of her coming home to you they will send her home. Good luck 💐

www.gov.uk/government/publications/hospital-discharge-and-community-support-guidance/hospital-discharge-and-community-support-guidance

Thankyou so much all of you for your advice, it's really appreciated. It's looking like DM is unlikely to survive her hospital stay. She's now got double pneumonia and her brain seems to have been damaged by her low sodium levels.

The guilt is unbelievable. She's my DM I shouldn't be willing her to die, but with dementia in the mix living feels even more horrific. Were it not I'd be telling her to fight it with everything she's got, now I'm hoping the end is a gentle and kind one.

Once again Thankyou, you've all made me feel less alone.

The guilt is dreadful but the way you feel is totally understandable and I think normal when you add dementia into the mix. My relative has suffered for a long time with dementia, and if I could change things so he had had a peacefulish end earlier I would do. We've now agreed with his wife that we won't put him through any more antibiotic treatment and will let nature take its course the next time he gets an infection.

I hope things go okay and your mum passes without too much distress. My thoughts are with you, this must be a terrible shock.