DF - heart failure, in hospital, no cure - what next?

[Wandamakesporridge]

Hi all, I have been a lurker on here for a while and have found it helpful.
I would appreciate any advice on my situation with DF.

DF is 84 and has had worsening health for a while but has gone really downhill in the last few months. Now he is in hospital because of his edema which we have been told is due to heart failure and it’s unlikely there’s anything they can do for him. He is not responding to medication. The doctor is talking about palliative care.

I just don’t know what to expect next?
DF wants to go home as he doesn’t like it in hospital, but the Dr said they won’t discharge him until his condition is stable.

I asked the Dr what the options are for him leaving hospital and she said he would have to be assessed by OT and physio, who will advise what care he needs.

Up to now he has refused to have carers in (even though he needed them!) so he doesn’t already have anything in place. But his health is too poor now for him to manage alone.
The doctor also mentioned the possibility of a nursing home (he’s not going to like that idea!).

So - how likely is it they will recommend he goes to a nursing home? Will we have to find one, or will the hospital have to recommend one according to the medical care he needs? How does that get paid for?

DF is not being treated very well in hospital (eg not being changed into clean clothes when he was sick) so I can understand why he wants to leave, but he needs proper care arranged first and I just don’t know how it a
works. My sister has been looking after him up to now (I live too far away) but I know she is worried he’ll be sent home and it will be too much for her to manage, and I don’t think it’s fair on her to take that on.

I think because he’s gone downhill so fast it’s taken us by surprise - he was discharged from cardiology last year, and a recent doctor said there was nothing wrong with his heart, so now to be told he has heart failure and it’s terminal is a bit of a shock. But his quality of life is so poor now that really I think he just needs to be somewhere where he can be made comfortable.

I’ve been reading the NHS and Age UK websites - but am still confused - I know you can request a care assessment for help at home, but I don’t know if we’ve gone beyond that now? For someone who is very ill, is it the same process?

Thanks.

Your sister needs to make it clear to everyone that she is not in a position to offer any care.

It's basically still the same process, assessment of needs assessment of finances, with one exception which I’ll come to later. Being in hospital means he’s already plugged into that process.

it sounds like the assessment of need will be done by OT/physio. You’ll probably need to find nursing home, and choice will be constrained by who has vacancies. Social services can help. There is also a hospital discharge team who you need to make contact with, and establish that you wish to advocate for your dad, but the family are not in a position to offer care.

If they decide he can go home, they’ll maybe offer a reablement package, up to 6 weeks of carers who assess whether he needs help at all or whether he needs longterm help. If long term, care passes to social services.

care in the home - he will be assessed for a financial contribution based on his income and savings. He may be able to apply for Attendance Allowance.

Nursing home - as before, but his home, if he owns it and doesn't have a wife living in it, is also included. If he’s a self funder and doesn’t get any contribution from the Council, he can apply for Attendance Allowance - every little helps. He’s likely to get a nursing allowance but many homes take this off the fees before they give you the price, so in practice it may be irrelevant.

The exception mentioned above: Continuing Health Care CHC - very high bar, needs daily nursing decisions, being bedridden with bedsores, dementia, stabilised heart condition doesn’t get it, for example. But if he’s within a few months of the end, there isn’t time to go through the assessment process, so there’s a fast track process, and its easier to get.

My mil was desperate to go home, she had carers 4 times daily who helped her to the toilet, got her up, washed her, dressed her,prepared her meals, made her a cup of tea, put her to bed, everything.
My husband went over twice a week to see her, do housework, washing and did her food shopping, she could have paid for that too, but he was happy to do it when he visited.
This worked reasonably well and she was happy that she wasn't in a home.

Don't panic, you don't need to be the expert in this because the hospital discharge team do this for a job. You can't see anything happening now because it's not time yet. In my experience as a relative nothing seems to happen until the medical side say that the patient is medically fit for discharge. That is the magic phrase where the gears start to turn. You might think that there would be some advance planning for discharge but I didn't see that. It's a period of nothing happening followed by a spell of your phone ringing constantly.

Whether he returns to his home or to a home is going to depend on how much care he needs, the decision point seems to be whether four care visits a day is enough to meet his needs. If he's desperate to get home he might tell them that his family can do everything - don't miss your chance to tell the discharge planning team exactly what you (plural you) are able to do week in, week out. If he does go home you will need a spare key for the door the carers will be going through, as part of the discharge process someone will fit a key safe. The occupational therapists will deliver equipment, carers will arrive on the day of discharge and assess the living situation, the district nurse might be calling. There is so much to keep track of until it all settles down, so many people will be phoning the family contact on the day of discharge that they have fat chance of actually doing a day's work.

Another relative was discharged to a residential home, the social worker gave her daughter a list of local homes that had vacancies, the daughter picked one and that was that.

Thank you everyone, that’s really helpful.

I’ll tell my sister she needs to make it clear that she can’t offer the level of care he needs (she also works so can only go once a day) and I am too far away (3 hour journey there).

4 carers a day might be ok but obviously depends on what the OT and physio say.
He seems to think he’ll be out of hospital on Monday, I think it’s unlikely they’ll be able to organise care that quickly.

We already have a key safe fitted.

So it’s the discharge team we’ll need to liaise with - but only after he is deemed medically fit for discharge by the doctor.

I shan’t panic yet - I was worried I should be phoning round nursing homes….

(I think I am still shocked how quickly this has all happened and why the heart failure wasn’t picked up before now.)

Hi OP, the heart is a muscle and it might have been ok before, but something happened to damage it (a viral infection maybe) and then it's not strong enough anymore, bam there you are, now there is "heart failure"...

Anyway, my Mum had this - she would get swelling in her legs, find it very difficult to breathe and move from room to room. The diuretics would be quite hard on her kidneys - but particularly when fluid got to her heart (once, this was triggered by compression bandages on her legs trying to help with the edema there) they had no choice.

She would be ok at home and stable and then something would trigger a turn for the worse and be hauled into hospital to be buffed up. The last time, she was sent home with oxygen.

In her case the treatments to keep her heart and lungs going killed off her kidneys - and then that took her out. It wasn't too bad a way to go.

I hope you can get your Dad cared for. It's pretty stressful as the patient (who may not be 100% there, particularly if their blood oxygen is low or they have a UTI) gets told what's going on (as much as anyone is...!!!) but may not remember.
"We'll start thinking about discharge timing and planning after the meeting on Monday, Mrs Boggins" turns into, "They're sending me home on Monday" and then you all turn up at the hospital with brown pants all fired up to yell at people and then people look at YOU like you're crazy.... Yeah super.

You had good advice, dad needs to accept assessment by discharge team who can set up care package for discharge home if he insists on that.

Good advice to make sure that Dais talks to hospital discharge team to advise that she can only pop in at random times once a day if that. Dad might tell them a "story" that "my dtr will help him with everything", so at least forewarned is helpful for discharge team. They are very experienced.

If the hospital put your father on palliative care you should have access to the hospital's Palliative Care team. If they don't offer insist on speaking to them. Because he is on palliative care they may be able to fast track the care through Continuing Health Care.

When my Mum was put on palliative care, we were very clear as a family we wanted her to go home and they were amazing and they arranged everything. By the time she got home, only two days later, a hospital bed had been delivered, a care package had been sorted out and all the equipment and medicine she needed had been arranged.

Something to understand about Continuing Health Care, if your Dad is entitled to it. They will try and provide the minimum care package but they are required to provide the full care package that meets your Father's needs. Speak Beacon if you have any problems.

There is a lot the hospital in particular the Palliative Care team can do to respect your Father's wishes so my advice is to talk it through with all of the relevant teams and your Father if he is able to be involved, and then you will be able to make the right decision from there.

I wish you well.

I’d definitely look at applying for attendance allowance on your father’s behalf, it’s not means tested and can help. When my mum had a stroke social services put us on touch with someone who was able to help with filling the form in to make sure we said things in the right way so she’d get the extra money. They cant’t discharge your dad from hospital until the right care package is in place. That was what worried me about my mum but social services turned things round very quickly.

This is great advice, if the doctors believe he is for palliative care now then the palliative nurse and heart failure nurse can help arrange a safee discharge home if thats what he wants. Does he live alone. There may also be the option of hospice care at home.

Yes this sounds just like DF. Finding it hard to breathe or walk, and he is very tired.
The Dr did say that the diuretics to reduce the swelling are likely to damage the kidneys.

I think that’s exactly what’s happened - they’ve said they will discuss next steps on Monday and in his head this means ‘I’m going home on Monday!’

Discharges are being delayed atm due to lack of carers, people are waiting months. If your dads finances can allow for private smaller company carers, shop around now and see if anyone has space. It may well speed up discharge considerably.

Thanks so much for all this advice! I have made notes. Everyone is so helpful on this board 💐

Your sister should not say she can drop in every day. This will be taken as a commitment without time off for holidays or illness. She should admit to no more than she can cope with 365 days a year for the next 10 years or more. Doesn’t stop her doing more as and when she is able and willing.

OP

Heart failure is not always because of a diseased heart, it is when the heart cannot push enough blood around your body, so in your father's case it sounds like the edema is putting a strain on his heart, which will make the edema worse so the heart has to work harder.

The hospital team will work with all of you, DF, family, Dr etc to create a plan.

As with everything cost is always an issue and if you can pay you can have better service eg if you can afford it you can have a nurse there 24 hours a day provided by private nurses.

Going home is not always home as it was. My Nana went home when she was terminally ill, she had a hospital bed in her living room. Her home effectively shrunk from a 2 bed house to this one room.

She did move to a nursing home because she wasn't entirely happy with the care package eg if the carer has come to take you to the toilet then that is all they have time for, also my Nana's house only had an upstairs bathroom so it was a commode and she wasn't too happy with that.

My uncle (who was a nurse) picked a nursing home, turned up with no warning, asked if they had a vacancy and then asked to be shown round, there and then so he saw the place on a normal working day.

My Nana was allowed to take some of her home furniture and make her room as close to home as possible.

When she died some of the carers came to her funeral.

Spoke to my father last night and he says the heart disease is caused by his left ventricle but didn’t seem to know much more. Whatever the cause, the Dr didn’t seem to think it was treatable - except with the diuretic medication which has some negatives.

He lives alone in a small bungalow so it could be adapted I think, but will have to see what the discharge team say.

I think if we had an idea of timescale of how long he has left that would help us to plan - he did ask the Dr this himself, but she said to wait and see.

It's hard to tell OP, for two years Mum was booking concerts for us to go to months ahead and I would be thinking, "Optimistic!" but she made them all.

Something would happen (an infection or whatever) and she would end up in hospital and we'd wonder whether this was it, this time, but they'd fill a blunderbuss with antibiotics and diuretics and other drugs, whack it all in her, stick her on oxygen, and it would work, ....until the time it didn't.

Of course part of it is that doctors often avoid "how long" conversations, partly because they see such variations in disease progression, partly because some relatives kick off, partly because patients get "moved to another ward" and they genuinely don't know what happened to them after that.

I took extra unpaid leave from work (not much, a day a month) so I could go see Mum and have fun while she was still around, and also made excuses to take little videos.

Mum loved her heart nurse whose job was to keep her out of hospital, has your Dad got one?

I think if we had an idea of timescale of how long he has left that would help us to plan - he did ask the Dr this himself, but she said to wait and see.

It's really hard for doctors to know. Unless someone is right in final stages, as it can vary so much from person to person.

My grandad was "given" 6 months by doctors when in chronic heart failure in hospital. Feisty man that he was, he lived another 35 years (but regularly went purple in the face when walking too far...) We called him a medical miracle..

I think at 84 your dads heart is very tired and not clearing fluids from his legs, and you should start to plan for less mobility, fatigue and shortness of breath when he's trying to mobilise around his home, and supporting him to make sure his financial affairs are in order.
I'm really sorry that your DD is so unwell OP. It's very hard to see your strong parents start to become frail and poorly.

DF not DD, apologises that was a mistype

Thanks all. You were all correct - the palliative team are now involved, and will be organising care at home and any modifications to his house. He has been ‘fast tracked’ because of his rapid decline, and because there are no treatments left to give. So at least we don’t have to worry about finding carers.

All this going on at the same time as my DC sitting GCSE exams - I am feeling stretched both ways.

Life always has a curveball to throw at us, doesn’t it…..