My mother was admitted with a chest infection to A&E and is now on a ward but while they were doing their checks they found she was in AF. They have put her on Warfarin and nothing else? What has upset her the most is the fact that they told her she has Heart Failure and will have to have warfarin forever.
When I spoke to the ward sister I asked "Is it AF" which she confirmed. I told her that I was diagnosed with AF in 1992 so am fully aware of the condition, but would it not been better to explain the condition instead of saying Heart Failure to a 93 year old who has fear of dieing!
BHF Explain it:
Heart failure
Having heart failure means that for some reason, your heart is not pumping blood around the body as well as it used to.
Which is far better than just two words that have frightened her and took a lot of convincing that is a lot milder than my own AF.
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Offcut
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That's awful. This will totally undermine her confidence. She will be expecting total failure at any minute. Can you show her the BHF definition? Perhaps you could print it off for her. I would explain to her that she has developed your heart problem ( perhaps you inherited from her in the first place! )
please tell her that I met someone in his 40's at the IAPO conference and he had heart failure in his 30s and 110 years later , he is very active and healthy now! He has warfarin for Af and works, travels and you wouldn't know he has had heart failure!
As an AFer I know that you can live with it but the seed is planted. She has a selective memory and will err to the worse I am afraid.
BTW does that mean he is 140 years old now
That's appalling. As Offcut said, the damage is done; the seed is sown. Only thing is maybe for a professional to explain to her what it actually means to try and minimise the effect on her? i.e. that it's medical jargon, and failure does not actually mean failure in the normal sense of the word!!!
It's a bit like "chronic", which to me means dreadful, serious, awful. But in medical terms it just means recurring a lot according to the medical dictionary I just read.
That is so true I have a chronic lung condition as well! But what she is hearing is the problem. It is a case of the worst person to make an instruction sheet is the person that knows how to do it.
Seems to me there is a grave problem with the ward and the sister in charge. Its an emotional time for your mother and for you, and a casual selection of words or misinterpretation of any condition needs to be brought to her attention. To speak of failure in any condition is a clinical approach and not a humanitarian one. She could have simplified this for your mother which still gets the message across to her, something like "The structure of your heart is good but its the blood flow around it which needs help". Go speak to her about this if you feel strongly about it. It's too late for your mother but will maybe help another 93yr old, and reassure your mother she has a beautiful heart, which needs a little help now, this might help her emotionally. Feel for you
I have but I am afraid that they are looking in a clinical way and do not seem to see that there needs to be a human approach to someone that has no medical knowledge of any sort.
I am happy for them to talk to me in this way as I am aware of the terminology they are using, but my mother does not and they need to look at that.
I am sure you did your best Offcut, but they are still dealing with people not machines and this is part of their training too, obviously they have forgotten that, your mother is lucky she has you to soften the words and lets face it, even if you are younger when this first happens it is very frightening. My thoughts are with you and your mother.
Thank you for your kind words. I use a mantra from a business consultant " Looking from the helicopter"
Which means if we all look down on what is going on we may see a very different thing from the ground floor. Because it sounds right it does not mean it is!
I'd make a formal complaint to the hospital. Honestly... These people are in such a position of trust, I am sure sometimes they have no appreciation of the impact of their words - and it is a very real impact. It may be clinically correct and she may not understand what a blow that message was, but it has affected your mother badly, and that is terrible. Very hard to undo that sort of unthinking damage. Maybe we need to start a campaign... *gets campaigning hat out*.
I am 54, need up n the hospital and diagnosed as AFib ....at that time they say my heart had been so stressed and in AFib for a while, it had effect the lower chamber of mr heart EF was only 30% and I had a clot in my heart ....that put me into the heart failure category! had to endure the repeated visits by the heart clinic peopl telling what I could and couldn't eat now that I was in heart failure....well what do they know! after my cardioversion and meds and coming out of AFib primarily due to amidorane to strengthen my heart after just 3 months, my heart was back to normal operations and no longer considered in heart failure.....of course I have no idea what that does to my health record and pre existing conditions....
I keep finding my thoughts returning to your mother, and a few questions have struck me.
Who is 'they'? Assuming your mother is mentally fit she has the right to ask 'them' to explain better what they mean. There are degrees of heart failure as the BHF explains very clearly on their website.
Has your mother previously been very fit? I am assuming she must have been to have got to 93 without needing a medical exam which would have shown up AF/heart failure before. Most people would be very happy to have reached 93 at all, so maybe she has come to think of herself as indestructible and so this has been a greater shock, or maybe she has been dreading this moment. In that case she would be suffering from a sort of grief at the loss of her 'toughness' and no amount of telling her facts and pointing out how much luckier she is than other people will help.
Fortunately you are there for her and can let her talk it over and accept how she feels even if it is not rational to you. I am speaking from experience as I always regretted that I would not accept my mother's feelings when she became old and ill.
My mother is/was fitter than me. It has now come to light she is in kidney failure as well and this is the reason to why they are only giving Warfarin it would seem they have not told her this as she has made no mention of it. The one thing my mother has always had is a fear of is dieing. She has been a very fit person with very few illness's.
"They" are the paramedics and doctors at A&E and now the doctors on the ward. My mother has a habit of only hearing what she wants to hear and do not mean that in a bad way.
My problem has been getting the information to the facts. It now seems that the lung problem was more the heart problem and fluid. but they will not put her on water tablets as they will affect the kidneys?
I really feel for you both. My experience is that hospitals are now so bound by 'confidentiality' and 'patient choice' etc that it is very difficult for carers or family to get the full info. Sometimes the patient can seem quite 'with it' to someone who does not know them well but even if they are they may forget, 'forget' or edit it! Nurses and doctors see their job as healing the body.....won't suggest asking for a visit from the hospital chaplain! But maybe there is a counsellor available?
She has had a someone to see her but she does not who? She thinks it was Age UK but no leaflets or information left or even a card with a phone number. So we are non the wiser as the desk nurse said that is in hand!
I can relate a little to this, although I'm a lot younger (only 70 now) when diagnosed in hospital with AF couple of years ago. I was only told by the cardiologist that I have got "heart disease", and only when I was discharged and read my discharge notes did I see the full diagnosis. Even then it was a couple of months, and two further admissions through A&E, before really finding out (having discovered the AFA website) what problems I had. To this day I can't recall anyone sitting me down and explaining things in plain English except on here, although I certainly appear to be getting the right treatment, and I suspect I am far from the only person this has happened to.
All I can really offer is best wishes for your Mum and you.
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