Carer

[orangetree93]

Hello everyone my name is Marie and i look after my 94 year old dad who has end stage Heart Failure is anyone going through this as i am working in the dark really wondering what will happen to him at the end i have contacted Marie Curie they are very good it is difficult knowing how this is going to pan out has anyone else experienced this.

[Happyrosie]

same with my mother, who passed away after ten days in hospital a few years ago. It’s impossible to tell what’s going to happen, orangetree99, as everyone is an individual. You have to look after yourself first and foremost as, whatever happens, it’s going to be hard on you. The NHS (if you are in the UK) is in a far worse position now than it was when my mother died, so my experience will not be replicated now I think.

[orangetree93 in reply to Happyrosie]

Sorry to hear about your mum yes it is hard not knowing what i will have to deal with the stress is massive i will take your advise and keep a check on myself thank you for your kindness Marie

[Prada47]

Hello I would try Pumping Marvellous a Charity set up for people with HF, they are experienced in all matters of HF.

Regards

[orangetree93 in reply to Prada47]

Thank you for your advise all the best Marie

[Jerrahem]

Hi, sorry to hear about your father. I believe it is very difficult time. I went through similar experience with my late father. I was in my teens. He was in CCU for 2 weeks before he passed away there. The last week of his life he was just lying down and sleep most of the time. He needed dialysis as heart is getting weak.

I guess one thing we could do be present and be strong for them. Family support is really important and take care of yourself too.

[orangetree93 in reply to Jerrahem]

Thank you for your kindness you have been very brave at a early age seems there is a pattern in the end that i will look out for all the best

[Bingo88]

Good morning. You have been given some good advice already. I looked after my Nan before she died and I was only 18. And the hardest part is not being able to do anything to help except be there for them. It's a very difficult time to go through. Hope you have family and friends for support. Brian

[orangetree93 in reply to Bingo88]

Thank you Brian for sharing you experience you are right there is nothing to do but look after them well there is only me doing this but i have asked lots of questions all the best

[Furryears]

Marie I have no advice but I do know people on here have and they will share their experiences, stay strong x

[orangetree93 in reply to Furryears]

Thank you it is so nice to speak to people who have been through this now i know it is normal what i am going through with my dad take care

[JeremiahObadiah]

Good Morning

I’m sorry to hear of your father’s diagnosis. How is he now? He’s had a long and hopefully happy life.

My father died two years ago at 94. He was sent home from hospital . The hospital was very hectic and couldn’t really help him any further, so we were given a choice for him to be fast tracked into a hospice or go home and my very elderly mother decided she wanted him home. A care team came in 3 or 4 times a day. It was a sad time, I cannot deny that. He gradually slept his way out of life.

If you are offered help , take it. And if you aren’t, ask for it. You might ask your doctor to get an end of life care package in place, ask to have a hospice place if that’s appropriate, ask for appropriate equipment in terms of bed etc. As I don’t know what stage he is at, this might be premature but it would definitely be worth accessing or at least exploring all the possibilities. The BHF nurse might give you more advice and help. There is a phone number. If you can’t find it message and I’ll try to find it.

Sending you and your father best wishes.

[orangetree93 in reply to JeremiahObadiah]

Thank you so much for your advise dad is a very strong person and has been bought up tough most people would have sat down and let it progress he has all the symptoms of heart failure short of breath cough losing weight housebound i watch how each year he gets a bit worse i had no idea what will happen next till i came on here now i know what to expect which will help me to prepare i have contacted Marie Curie they said if i need any help to let them know but of course that will be up to dad i went to the a and e with him 11 hours in there they didnt do anything because they know there is nothing they can do i hope you and your family are ok after your sad time all the best and thank you again for your kindness

[JeremiahObadiah in reply to orangetree93]

Do keep asking on here if you have other concerns or questions. Someone might have helpful information or have had to deal with whatever crops up.

It is very sad to see a parent deteriorating before your eyes but in many respects at such an advanced age, knowing we couldn’t restore him to health or his former self and seeing how diminished he was, we were well prepared and that helped us all feel less overwhelmed.

You are having to cope by yourself so really do look for any and all assistance available . His doctor could/should be able to arrange or at least start the process for you when the time is right.

[orangetree93 in reply to JeremiahObadiah]

Thank you for your advise yes i will be asking when the time is right for help as it is a big job you are right you cannot do anything to make this not happen it is the hardest thing anyone has to do i have got lots of information off here and can identify with a lot of it this has helped me knowing its just normal that these things are happening many thanks again all the best

[Hidden]

I endorse JeremiahObadiah's advice. You have been in touch with Macmillan, and they are the experts here. Please ask for their help, and lean on them-they have a sixth sense about e-o-l experiences and are the best people to have around you. My thoughts are with you and your Dad through this.

[orangetree93 in reply to Hidden]

Thank you for your advise you are right and thank you for your kindness i wish you well too

[Shabana1974]

Hi my mum was diagnosed with end stage chronic Heart Failure in 2009.(she was 56) At the time she was given 6 months. The nursing staff were an amazing source of support. And put mum in touch with Sue Ryder Hospice in Oakworth. My mum use to go to there day centre so my little brother could have some time to his self. Fast forward to April 2014. We notmy was becoming confused. So we contacted the hospice and they admitted her that day. I drove up from London and she saw us all. Then Tuesday she went to Sleep. We thought we had to accept that she would slip away in her sleep and we all said our goodbyes. Then on Saturday I was due to return to London but when I went to see mum 1 last time before returning to London she sat up talking away, like we had my old mum back. No confusion or anything. Then was asked why I was leaving when I just got there I explained I had been there all week and she'd slepted . After I returned to London and my oldest brother returned to Northampton she slipped away. Like she just wanted to know we all got home safely. Everyone experience will be different but accept all the support you can

[orangetree93 in reply to Shabana1974]

Thank you for your kindness how strange my mum did the same a few days before she passed she too was sitting up in bed just normal we thought she would be home for Christmas but sadly died just before Christmas 2014 that is the strangest thing ever. Your mum was looking out for you just checking you where all safe and ok that is special thank you for your advise all the best take care

[Qualipop]

It's impossible to say just what will happen. With my mum it was a sudden heart attack; my dad simply faded until his breathing changed and stopped. It was quite beautiful. I had Marie Curie nurses to sit with him at night because I had a 3 yr old child and dad was scared to be alone. They were absolutely wonderful both for dad and for me. Utter angels. Talk to them.

[orangetree93 in reply to Qualipop]

Thank You what a lovely way that happened for you yes i have spoken to the Marie Curie nurses that were very kind i wish you well take care

[Qualipop in reply to orangetree93]

What you are experiencing is the hardest thing you will ever do so my prayers go to you. I was terrified; it was something I'd never before experienced but the nurse sat with me and reassured me and it turned out to be very gentle and peaceful and I will never forget the big smile on my dad's face as he opened his eyes just once and I'm certain he saw my mum waiting for him. I'm crying now- it's his birthday today.

[orangetree93 in reply to Qualipop]

How beautiful yes i am dreading it when it is his time i am terrified too it is the hardest thing to come to terms with i cry most days about my mum passing and its been 9 years this shows we are caring people so be proud of yourself because they had a caring daughter in there lives celerbrate tomorrow they would like that all the best take good care of yourself you deserve it

[Qualipop in reply to orangetree93]

Yes we all dread the inevitable but it's not just losing them that's scary and upsetting, it's the wondering how it will happen that's the scariest part but truly no one can say. Mum died in hospital so we weren't present and no one had warned us but I was with dad and I'm so grateful. My only regret is that, with a very young child and a house to run, I didn't spend as much time just sitting listening and talking to him as I should have done; asking about his fears and worries and thinking about how HE was feeling, not how I was feeling. I spent far too much time on the practicalities to really listen and talk to him. Make every minute count.

[orangetree93]

Yes you are right on all counts it is how it will happen that bothers me the most and yes i am so busy with his care cleaning garden etc no time to listen mind you i am listening to all the complaining ha ha but i love every minute of it so i look at it with a sense of humour that was sad about your mum we got about two hours notice although they knew she was going for days and did not tell us why do they do that its very wrong you take care of yourself