Advanced heart failure, anyone with experience?

[NellyTheCake]

Three years ago, on Christmas Day, I took mum to A&E. She was diagnosed with heart failure.

Her health has been up and down over the three years. But there has been a marked decline in the last 6mths or so.

Her short term memory is very bad, she has problems understanding how to do simple tasks sometimes.
She is housebound now because she can't walk very far. Every day she sleeps for hours. Then goes to bed and sleeps more. As a result she snacks rather than eating a proper meal.

The number of falls she has is increasing. Her legs are swollen with fluid and just give way.

However, she seems happy enough sitting at home, reading or watching tv.

The GP is aware of her problems and the cardiac nurse visits regularly.

The research I've read suggests life expectancy is poor. But what will happen next seems to be very variable.

I would just like to be a bit more prepared for what's to come. Mum is in denial and won't discuss it.

Does anyone have any experience of dealing with heart failure like this?
Thanks

The British Heart foundation forums are really helpful, it’s worth having a look there as lots of people have commented on their experiences both as someone living with heart failure and those caring for someone with heart failure. Wishing you and your DM well, it’s not easy seeing someone you love become more hindered by this.

If you have a specific worry the British Heart Fiundation has a helpline staffed by nurses. I’ve found them kind, informed and understanding of anxieties. All the information is in their web site. It truly is an excellent source of support. Good luck with your mum.

Thank you
I didn't realise there were forums on the BHF website. I'll start there.
Not sure I can face talking to a nurse just yet.

I’m in a similar position, my DM was diagnosed with late stage heart failure and a failing mitral valve in early September this year. She refuses to acknowledge it and when asked about health conditions will only mention arthritis.

Her health has declined rapidly in the last few weeks, not helped by forgetting to eat / drink / take medication, leading to confusion and hallucinations and culminating in emergency services being called out as the key holders couldn’t get in to the house to check on her (my DSis and I live several hours away).

She struggles with fluid build up impacting breathing (despite high dose diuretics), sleeps a lot, has lost much of her appetite, has continence issues and has very poor short term memory. She was forgetting how to use things like the microwave and stairlift at home, and left the gas on, as well as falling over more frequently.

I was so relieved when she agreed to try respite care and then came to the realisation that she couldn’t manage at home and has decided to stay in residential care. She has had an episode (maybe more than one) where her blood pressure crashed, although that seems to be under control for now.

I know that the literature says life expectancy is generally 6 to 12 months after diagnosis, but it’s so hard to know and to plan for what’s going to happen.

I don’t know if any my experience with DM is any help to you, and I wish you the best of luck.

My Grandmother passed away 2 years ago from congestive heart failure at 92 years old.

She had been diagnosed 10+ years beforehand. She also had arrhythmia/AF and kidney failure caused by the heart failure.

She deteriorated slowly over 3-4 years and spent the last year of her life in her chair. Her short term memory was awful and she became very repetitive. This was caused by lack of oxygen to the brain I believe.

Towards the end she would have bouts of severe nausea and dizziness and was short of breath. She also had a constant wheeze which was the fluid building on the chest despite diuretics.

She was eventually put on palliative care at home and her appetite decreased dramatically.

She then suddenly took to her downstairs bed for 9 days before passing away.

It was a kind death, as far as death goes and almost a relief that she was no longer struggling.

She was the strongest person I've ever known.

Thank you for sharing your stories with me. @LazyGaaGaa @SabrinaThwaite

They both sound very similar to what mum is going through. Memory loss, sleeping, coughing, lack of appetite. She has them all and more.

It's so sad seeing how much she's struggling just to get through the day.

Yes, my Mum died of it.
Mainly she stayed sharp, but if the fluid on her lungs took her SATs down too much she would be short on oxygen and stop making sense.
She would be yanked into hospital and they'd drive the fluid off her heart and lungs. But this would do her kidneys no good at all.
The last hospital admission - in the end her kidneys failed, and some days later her heart rhythm went bananas because of the resulting issues with levels of sodium & potassium in the blood. And - you need a properly beating heart to live. So that was that.

It's not all that predictable - she was ok (well....) for a bit, then something would go wrong and she'd have to go to hospital to be fixed. And eventually there was an admission she didn't come home from.

Swollen legs were a frequent issue, but they're less gung-ho about treating them. The kidney damage can be justified if it's keeping your heart & lungs working, legs tho...

Yes we lost my dad to congestive heart failure in 2010. What type does she have, OP?

My father died of heart failure, but only received the diagnosis after a heart attack and he wasn’t able to leave hospital following that. He lived for 3.5 weeks after the heart attack, so although I can’t comment on what to expect at home, the final stages were well managed in hospital.

They tried to treat him for 2 weeks, and then he was on palliative care for 1.5 weeks before he passed away. In terms of his experience in hospital, they managed his oxygen levels very well and due to that, he didn’t experience any mental confusion until the last day or two before he died. He was lucid and comfortable the entire time. Basically the diuretics didn’t work to get the fluid of his lungs, and they eventually couldn’t do anymore. He needed oxygen 24/7 for the last two weeks and was catherised. He was quite physically weak and couldn’t get out of bed for the last week due to the heart failure. Palliative care was excellent and they did what he needed to be comfortable and pain free, but didn’t bother him more than that. He was put on a syringe driver about a week before he died, put on a second syringe driver on the Saturday as he was in a bit of pain due to the increasing fluid levels in his legs etc and he died about 4 days later. He was unconscious for the last 24 hours of his life, and increasingly sleepy before that, but was able to eat and drink moderately although he didn’t have much appetite.

I wouldn’t call any death a ‘good death’ but in terms of what these things could be, his experience was comfortable and gentle.

I’m not sure if the above is much help, but I know I was desperate for some idea of what to expect during those days and really valued stories of what others had experienced so hopefully this might be of some help with information in some way.

https://pumpingmarvellous.org/

Brilliant organisation, lots of really easy to understand info on there as it’s a patient organisation.
Hope it helps.

I don't know type.
If mum was told she's forgotten. And all her paperwork is a massive mess so finding anything is a nightmare.

I’m not sure if the above is much help, but I know I was desperate for some idea of what to expect during those days and really valued stories of what others had experienced so hopefully this might be of some help with information in some way

@Earlydarkdays thank you for sharing your story.
It is helpful.
I'm understanding more about what is happening and what to expect.

I suppose we are "elderly" but at 68 I don't feel old or infirm. However, DH (also 68 but with 18 years heart history) has spent this week in the cardiac unit and will spend next week there too; heart "failure", fluid retention are all part of the picture.

@NellyTheCakeIs she on an oxygen machine at home? Does she have fluid gathering at her ankles?

She doesn't have an oxygen machine.

She has lots of fluid retention in her legs from her knees down. The docs keep adjusting her medication to try and keep it under control as much as poss.

Sorry to hear this about your DH. I hope he's able to come home soon.