Heart failure - how might this end?

[SierraSapphire]

DM has had heart failure for a while, but it seems to be getting worse, she's had two hospital A&E visits in the last two weeks with lightheadedness and difficulty breathing and is currently admitted and on oxygen and anti-diuretics to keep the fluid out of her lungs. They are just monitoring her at the moment, presumably to see whether this changes and she is able to cope on her normal regime of tablets and without the oxygen.

I know it is difficult to predict, but has anyone else had this experience and is this likely to be close to the end? We thought she was going to die many times over the last five years of varying things but she's always managed to rally, so it's all been pretty exhausting. DB and DD rushed in from different parts of the country on Thursday night as we thought this was it.

I'm just wondering how to manage life over the next few weeks or months (depending on how long she lasts) so any experiences of similar would be really helpful.

I don't think anyone here can tell you. Heart failure can be a sort of 'how long is a piece of string' situation. You need to discuss this with her doctors.

You could say that about many questions on this board though Pamina. Of course I will ask her doctors, but I'm looking for some practical experiences of people who've lived through similar as doctors aren't really massively helpful in thinking through what this means for family members' day-to-day lives.

No, what I was trying to say is that heart failure is a continuum. It's impossible to say where your mother is on this continuum at this point in time. People can live with heart failure for many years, especially if they are complying with medical treatment, but there are many other variables that can affect outcome. Only her doctors can tell you about her prognosis based on the her history.

Hi SierraSapphire, we are in the same boat with my Dad. He’s had 4 admissions to hospital since Christmas. He is definitely declining but still carrying on. His ejection fraction at Christmas was 25%. We were told in March he has end stage heart failure. I think while the drs give him the antibiotics and other meds he will carry on and on! And wear everyone else out in the process!!
Also he doesn’t want to go in a home so we just carry on with 2 carers 4 x per day which he doesn’t like. My sister and I do what we can but every week there are numerous problems that arise which we spend hours on the phone trying to sort out. Hope your situation gets better with your Mum.

Sorry you're also in that situation @Lendmeashilling - it's obviously only going one way, but it's so difficult wanting to make sure DM is okay but it's causing chaos in my life. She's still in hospital, her sodium is too low to discharge her, probably the anti diuretic, and they need to get a care package in place - she's refused all care up until now. This morning she was convinced she'd moved hospital even though she was in the same place she's been since Sunday! DD and I are due to go on holiday next week. I'm just expecting repeated hospital visits until one day that's it.

I am in the same situation.Mum admitted earlier this week with oedema in legs and trouble breathing.She was only diagnosed with heart failure in February.She had been ok until around 6 weeks ago and since then has declined rapidly.I am going to ask the doctors if they can gauge how long she'll last.It does seems to depend on response to meds and comorbidities.Unfortunately mum also has kidney disease so diuretics are tricky.

We've been in and out of hospital for the past five years with various things, mini strokes, heart issues, digestive issues.... I know you can live years with heart failure, things seem increasingly difficult for DM, and she feels if she doesn't have enough fluid in her body, she gets cramps and numbness in her legs. She was really struggling to breathe last week when they took her in, I followed the ambulance on in my car and when I got to A&E, they put me in the relatives' room and offered me a cup of tea, so I did think she had actually died, and in some ways that would perhaps have been the best thing, she is very weary now, she had a very strong life force before, but that seems to be leaving her. DD and I have taken her in various things but she's very bored in hospital!

@SierraSapphire
It's been the same with my mum..two strokes in just over two years and lots of hospital since the one in Nov.A start she seemed to have no lasting damage as she got clot buster in time.However they started her on diuretics,then took her off as her electrolytes went off, then she got pulmonary oedema,flu and they can't seem to get the meds right since.Too much diuretic and sodium goes too low,not enough she builds up fluid.It's so sad to see her go downhill but she is nearly 83.It's also frustrating that everything on internet is aimed at younger heart failure patients with cheerier outlooks.I want something that will prepare me somewhat for how this will go!

How is you mum now.Will she get discharged?
Each time my mum's goes in I worry this is it but on she continues...

Well, my Mum had (I think) 4? hospital admissions with heart failure over a couple of years.
The first two, they managed to buff her up and turf her out to go live her life.
The third one, she was in for weeks, finally got out with a portable oxygen machine, went to an all-weekend event with it trailing around after her... And was back in by the Wednesday. She never came home.

The trouble is: - fluid retention interferes with respiration, and you need that at all times to stay alive. Heart and lungs you can't do without. So, they throw diuretics at you, and that's tough for the kidneys.

Eventually she had a consultant come round saying her kidneys had failed and there was nothing more they could offer (+)

When kidneys fail, eventually the electrolytes in the blood get out of whack. This plays merry hell with the electrical system which keeps the heart rhythm going. And see above - no working heart, that's IT.

That's what happened to Mum - she went off her food, got diarrhoea, was moved into a side room (§).
We were visiting and she needed the commode, so the nurses shooed us out. A couple of minutes later they came sprinting out to get us - she'd had a heart attack and passed away a minute or two later with us by her side.

The reason the course of the disease is not that predictable is they can buff you up a bit, and then you're ok for a while... until an infection, or overdoing things, or SOMETHING triggers "decompensation" (fluid buildup, breathing problems, can lead to cognitive problems as you're not getting enough oxygen...and e.g. ulcers because fluid buildup is hell on the skin).

It wasn't the worst way to go. Aside from a UTI-induced delirium episode, which was worst of all but only lasted a day or two before they put her on a new antibiotic and fixed it) she was "herself" the whole time. The last couple of days her legs were terribly swollen and they couldn't do anything, but she didn't seem to be in pain.

Work let me do 4h half days starting at 0730 and take the afternoon off, so between me and her partner she had someone come in every day. I dropped everything else and put on about 20 pounds. Work offered caring, unpaid and bereavement leave so I was lucky there.

I think you just have to do what you can and if your best guesses don't work out, put it aside and concentrate on the present and future.

(+) In hindsight I have no idea why they kept her on the ward doing tests and even sent OT round (who were LOVELY) to help her with walking a bit, rather than getting a palliative care package together so she could spend her last days at home.
Maybe they still entertained some distant hope of turning the situation round? Maybe there was a tacit agreement that she was best off in hospital where she could get (relatively) timely care for any distressing symptoms? Maybe they were supposed to, but the message got lost?

(§) THEN they called in Palliative Care with a view to getting her home early the next week.
But an overheard conversation suggested they thought she wouldn't last the weekend, and they were right.
I'm not too sorry about this as she was generally receiving good care where she was, and I've heard some horror stories about things kicking off when someone is in their last days at home with only pop-in carer/nursing visits.

Sorry you and your DM experienced that @MysterOfwomanY but that was really helpful. I wonder if that's where we are. DM is still in hospital and they're still talking about discharging her at some point but they say there's something else causing the fluid in her lungs and they're doing more tests including kidney function, her salts were out including on admission so not just the drugs they've given her. She is less breathless than when she went in, but that's a pretty low bar! I am worried about her coming out when we're not there, but my business has pretty much failed and my own health has been affected because of caring for her over the past five years and I've thought she was going to die many times so dropped everything each time. I suspect she's getting close to the end. I think I need a conversation with the doctor when she's not there.

I was also lucky in that Mum had been very upfront with us years ago - advanced directive, POA, wills etc.

She was admirably stoic.

I cannot imagine how hard it must be if your Mum is frightened.

The doctors often don't like to be drawn on prognoses - I expect because some families take straight talking badly and some patients promptly defy the odds.

I had also come across Kennedy Ulcers recently at that time ... and upon Mum's last admission, the A&E nurse, a young man, was told she had an ulcer (clearly somewhere we would not normally see, so maybe it was on her sacrum). He more or less said "Hold my beer", told us to wait outside, and ten mins later she had had her ulcer sorted and dressed and she was in a hospital gown, looking and feeling cared for.

I felt a mix of comfort that these sort of people were looking after her and dread at what that ulcer might signify. I can't remember if I cried as we went home. I haven't been able to cry much since a couple of weeks before she died.

If you have older colleagues or friends, they are often v helpful as they've been through it themselves.

Reading your story and feeling so sorry for you. My beloved gran was exactly the same. We always say she walked towards the light many times and St Peter kept turning her away at the golden gates!
We lost her last year aged 91. She got an infection in the end and that is what took her, and sadly it was not a nice end. But she was at home where she wanted to be with my mum, uncle, me and our dog. She put up a good fight.
All the best OP. Remember to take care of yourself too.

My DM had heart failure for years, although she contracted pneumonia after a pacemaker operation last year and because of her weakened heart and lungs once the doctors had put her on a large amount of oxygen to try to thwart the pneumonia they then couldn’t get her off.

In hindsight I wish the doctors had told us that a large amount of oxygen for a number of days damaged a weakened heart and lungs.

I think the signs I would look for is how much oxygen are they giving your DM. If it’s close to maximum for around 2 days it is unlikely they will be able to take her off. Thinking of you, it really is a very difficult time thinking about the end

Thanks for sharing your experiences, and sorry for the difficulties you've all been through.

My DM is off the oxygen now, she was on it for maybe three or four days. She's trying to walk up and down the corridor in the ward, but not getting much movement otherwise, which can't help. She says she's not feeling hungry, but she is trying to make herself eat. She still has fluid on her lungs and there's a question about whether they'll drain them.

She's nearly 91, but she still texts, so I'm getting a steady stream of demands for things, some that she actually needs and some completely random things because she keeps forgetting she's in hospital at times! I did have a bit of rebellion this afternoon and refused to go to her house to get something she really didn't need.

I could see it going either way really. She has refused carers in her house up until now, which has been an absolutely massive bone of contention between us, but I can't see her coping at home without ongoing help after the initial six weeks (if we get that far). My DF had a fairly gentle death in the same hospital of pneumonia, but he was definitely ready to go, whereas my DM not so much!

How is your mum getting on OP? In this position myself with my mum and it is really difficult.

My dad had heart failure, but started with kidney disease about 2 years before he died & his Kidneys completely failed 9 days before he died. He was admitted as soon as they found out about the kidney failure, his appetite slowed down & stopped, he had uncontrollable diarrhoea, which they said was because of it, for all they did in hospital they would have been better leaving him to die at home as he wanted.

Sorry you're in the same situation @ThelmaDinkley - we're kind of in no man's land at the moment, she's been out of hospital for a couple of weeks, but her breathlessness is getting worse, she's been breathless even when just sitting. She phoned me at 6am yesterday morning to tell me she was dying and needed to change her will (she doesn't!). She's very tired and doesn't feel much like eating, but in other ways she's fine, she's been out in her garden. There's not really anything they can do medically, so I'm not really sure where that leaves us, just waiting for the next crisis I suppose!

So sorry for you Sierra Sapphire. It’s really hard isn’t it. Just about quality of life I suppose. Bless you I hope you manage to look after yourself too. My mum is currently still in hospital waiting for care package but she’s saying she doesnt need it and just wants to go home.

My mother died of heart failure 4 years ago. The last few months were awful. She was fully cognitively aware but her body just failed. Endless times in hospital with altered medication and discharged home when she was completely incapable of moving.
In the final crisis we were lucky enough to see a palliative care consultant. He said very few doctors recognised the final stages of heart failure and consequently strive to treat / prolong life rather than implementing end of life care.
He spent some time with mum and she made her wish to die very clear. He arranged for treatment to be withdrawn and she was just given pain relief. She died peacefully within a day.
What I am saying is that if possible see if there is a palliative care doctor who can assess your mum.
Best wishes

I posted in.this thread further up.I had the opposite experience and in fact ultimately mum wasn't responding to diuretics so doctors sent her into palliative care to the hospice and told me she had a few weeks left to live.She has since improved massively so now they're saying they need her bed back....they called it too early.I do think she'll only last another few months but now she's in the hospice and until we get a bed elsewhere can't leave.Very bizarre situation!She could be in worse places however as she has her own room and great staff to patient ratio.However as palliative care generally deal with imminent death in there the docs just come in,look at her abd leave.No real input.

Thanks for the responses, it's good to hear what's happened to others, though I'm sorry you've all had to go through it too.

It's such a strange diagnosis, we just lurch from crisis and hospital admission to her being relatively okay, although tired and breathless, with moments of panic like Tuesday morning when she thought she was dying (again) but then yesterday she was out in the garden tidying things up. No sign of any effect on her kidneys yet but that may come.

She seems to have a very strong lifeforce so we're nowhere near palliative care, although I do feel it could happen very suddenly. She's struggled to make herself eat for a few years now after abdominal surgery but has always made sure that she does, and also tries to exercise while walking backwards and forwards between the kitchen and the living room many times! She's very determined. If I were her, alone in my house with serious health problems and memory failure, I would be depressed and anxious, but her mental health seems mostly fine and she said she's happy to be alone.

I mentioned to people at work on Tuesday that I'd been woken up by her saying she was going to die and needed to alter her will, and they were horrified and said should I be at home, but after five years of crisis after crisis you just can't respond to all of them anymore.

My relative died two years after the first hospitalisation from heart failure.

in the end they got pneumonia for the nth time and decided they didn’t want to take antibiotics. We all understood as their quality of life was diminished at that point.

My dad lived with heart failure for 7 years. For the majority of that time he remained totally independent and enjoyed life, but gradually became more frail. The last 16 months of his life were awful for him following a series of falls and long hospital stays linked to worsening heart failure. We managed to keep him at home with the help of carers until the last couple of months before he passed, when he had his final hospital admission after yet another fall and it was decided he needed 24/7 care. He seemed to suddenly deteriorate quite rapidly ...I thought he had a chest infection but it was due to a build up of fluid on his lungs which they were trying to offload. He died in my arms very peacefully on April Fool's day, which he would have laughed at the thought of! I miss him every day and feel so sorry he went through that at the end.