Mum - 81 - Living with Heart Failure - British Heart Fou...

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Mum - 81 - Living with Heart Failure

Shirley0408
Shirley0408
12 Replies

Hi all. My 81 year old mother lives with my husband and me, she has done since we lost my Dad, 4 years ago. She was diagnosed 6 years ago. She has Atrium Fibrillation and a leaking heart valve. She was offered a bypass op but declined as she was looking after my Dad at the time. It has been suggested that she reconsider but feels she wouldn't have the strength to recover.She will not change her mind on this. She is s lovely bright opinionated person. Mostly she is happy and is very good company. Recently her breathing has become quite bad. If she is just seated, she is fine, so friends and family do not see her when she is struggling. Any slight effort, even just going to the loo, leaves her quite breathless. Going upstairs is not good either, but although we have suggested living downstairs, she doesn't want to as she loves the view from her bedroom. We have spoken about a Stair lift recently, so that may be the next step. I usually take her out once a week at the weekend( I work full time) and it is becoming a challenge to take her to suitable places. Usually garden centres, as we need to be able to sit down often. More recently, over the last couple of weeks, she has been taking most of the day to feel ok. She thinks that sleeping, well the lying down,does not help although she's very comfy. Recently the only word she can use is rubbish when i ask how she is. We've seen the consultant and he suggested she increase he Furusemide which helped at first but I'm seeing a decline for the first time really. Does anyone have any ideas, thoughts comments to help please?

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MichaelJH
MichaelJHHeart Star

I am slightly puzzled as you mention a leaking heart valve and then a bypass in the same sentence. If she has a problem with a leaking valve they would offer a valve replacement/repair. A bypass is usually for blocked coronary arteries. Furosemide is a diuretic used on congestive heart failure, as well as for liver and kidney issues. If the issue is a single valve there may be a less invasive procedure depending which one, do you know?

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Shirley0408

Well i am no surgeon but every consultant we have seen has suggested heart surgery. She has heart failure which to my understanding would be benefited by surgery which she refuses. so to be perfectly honest the type of surgery is not the issue, I was just looking for some help to manage the symptoms as the last consultant we saw in January advised that is all we can do now. She is also on Digoxin & Warfarin.

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MichaelJH
MichaelJHHeart Star
in reply to Shirley0408

It is worth giving the BHF nurses a call as they will have experience of this situation.

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Shirley0408

That is an idea Michael. We used to have Heart Failure nurses locally and she saw them every few months, it was a great help, but that resource has gone now. I may do that, thank you.

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mauschen

I agree with Michael, I think there is more going on with your mum that you understand. Talk with the BHF nurse and also your mum’ GP to get a better understanding of her medical concerns which will place you in a better position to plan for her care.

An occupational therapist might be an idea. They would come and assess your mum’s abilities, your house and organise things such as bath/shower aids, walking aids and can advice on strair lifts depending on where you live. The social work department can organise a bed with special positional functions to aid drainage of excess fluid which could be causing breathlessness and promote restfull sleep by keeping the head of the bed elevated to help prevent breathing difficulties.

Your mum sounds like a character:-) obviously she values her independence which has to be respected but she probably doesn’t realise how concerned you are. Reach out to the support services and get the help you need to make your mum’s twilight years more manageable and your life less stressed.

I commend you for caring for your mum, it is a wonderful thing if you can do it which will bring comfort long after your mum is gone. However, you need to take care of yourself, you will be no good to her if you drive yourself into the ground. Therefore get as much help as you can and apply for a disability badge so that you can take your mum out and about when you have time. Your heart failure nurse in the community or in the clinic can help you with this.

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Shirley0408

Thank you for you kind words. Sadly, we no longer have the community Heart Failure nurses in the area. They were a great help and Mum knew she could ask them anything when she saw them. We have seen the GP recently and she brought forward the consultant appointment for us. Without the op, it seems there is little else they can do to help. I am not at work today, hence my logging onto the community and I have just had a chat with her but she seems to think that the leaflets she has explain why she feels they way she does. And did not want to anything else. She has agreed to the disability badge though, I've been discussing it with her over the last few weeks, She has also agreed to consider a wheeelchair when we go on holiday. That's a first! As is the stairlift chat today.To be honest, at the previous visit to the consultant, i got the impression that the only thing we can expect as she gets older is that the breathing will worsen. I will monitor over the next few weeks and then I will call the helpline. Mum, as you say is fiercely independent, I had to use all my powers of persuasion to have her agree that living alone was not an option and she always seems to reject my ideas of assistance! Wish me luck! Thanks again.

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mauschen

It’s a start. Let your mum get used to the changes you have both agreed to then you can slowly introduce others when she realises that you are suggesting changes to make her life easier.

You are doing well... one step at a time.

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MichaelJH
MichaelJHHeart Star

I was talking to someone about your role in your mother's care. They suggested you ring the Carers Direct Helpline on 0300 123 1053. The helpline is open from 9am-8pm Monday to Friday, and from 11am-4pm at weekends. Worth a try.

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Shirley0408

Thank you for considering my situation Michael, very kind. I am not a full time carer, I work full time. Do you think they could still help?

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MichaelJH
MichaelJHHeart Star
in reply to Shirley0408

They might well be able to. The best thing is to give them a call. Afterwards let us know how you got on for the benefit of others.

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Shirley0408

Hi all. I contacted the BHF and spoke to a lovely nurse named Ashley. She was so helpful and gave me so so much information. We spoke for ages, probably around 45 minutes. I cannot tell you how helpful and reassuring she was. I know we have some tricky times ahead but I spoke to mum about it and as a result we have a company coming to see us this week about a stair lift. Mum has decided to look into getting a tilting bed. She's agreed for me to purchase a fold up wheelchair and I've applied for a disabled badge! We are also going to monitor her weight and fluid intake more and see if we can get a referral to a heart failure consultant rather than a cardiologist. Thank you again guys for your support. I will let you know how we get on.

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Plumbtorre

After a double bypass and mitral valve rrplacementer I have been taking seguril diautric . Recently my chemists ran out of seguril and gave me furusimede..after 3 days I had the exact same sympton's a's your mum. I went back to the seguril and within 2 days the symptoms started to ease within 5 days I was back to normal ( for me anyway )

Hope your mum feels better soon

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