Hello, hope everyone is well. I'm doing OK - keeping busy and trying to get back into a gym routine after a long break over summer. I had a momentary freak-out at about 5am this morning and just wondered if any of you had any insights you'd like to share. My heart failure diagnosis coincided with the birth of my daughter (now nearly seven) and I used to worry I wouldn't live long enough for her to remember me, then I worried I wouldn't live long enough to see her start school... Now I've lived long enough to see both of those and am "STABLE" for now. Nobody ever gives me any definite answers regarding life expectancy, it just depends on how long I stay STABLE, I guess, but one registrar did say their expectation was that I would live long enough to see my daughter grow up. I'm not sure exactly what that means (what would constitute "grown-up" really?) but as it's no more than a guess anyway, I don't suppose there's much point in asking for clarification. So I'm taking it to mean I have plenty of life left in me yet, but also that I'll likely die while my daughter is quite young to lose a parent - in her twenties? I don't know, but youngish, and it's obviously not an easy thing to go through at any age. Because of my stupid heart, I wasn't able to give her any siblings and she is a real mummy's girl. She doesn't like to be too far from me for too long and we are very close, spending A LOT of time together and talking and talking and talking... I'm happy about that and see it as one of the upsides of having an only child, but it does make me worry more (for her sake) about my dying. How will she cope without me there to help her through it? I should say, she has a lovely and caring dad, but she likes to keep him at arm's length and tends to see him as a barrier between her and me. They have fun together, but they're not emotionally supportive of one another, if you see what I mean. I don't want to lose the closeness my daughter and I have, but I worry I'm setting her up for a fall further down the line. And I know she's still little and she will grow up and do her own thing more and more, I just wonder if there's anything I can do to make it more OK that she'll lose me and have to have a life without me. She is far from independent - understatement of the century! And she's very emotional and overthinks things...much like her mother! Ha! Anyway, I'm not unduly morose about this, it was just one of those middle-of-the-night thoughts and I wondered if any of you had thought about similar things and maybe had some practical advice?
(PS My husband caught me looking tearful while I wrote this and has pretty much told me I'm a moron for worrying about this - it's his own special method of being supportive - but, after years of avoiding tough thoughts, I prefer to think worries through properly when they occur to me, so I'd still like to know if any of you have any thoughts that go beyond his, "Just stop it, it'll be fine!" Ha!)
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laura_dropstitch
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Hi Laura it’s my first time replying on here but knew I had to after reading everything you wrote. I to was diagnosed with Heart Failure last year which has quickly progressed to being chronic. I am lucky enough to have 5 children but my youngest is a 7yr old girl. I like you have had the same what some people would call morbid thoughts about if I should suddenly pass away and leave her so young. My thoughts are always in the middle of the night when I’m surrounded by darkness and can’t sleep. The thought of leaving her while she’s still so young and I still have so much to teach and share with her hurts. My partner like yours is a typical man in the sense of keeping the emotions in and feeling the need to be strong. I know deep inside he feels the turmoil as much as I do but says nothing. If there is one thing I’ve learnt it’s to live everyday to its fullest and create so many memories and take so many photos. Tomorrow is promised to no one and I just hope that my daughter no matter what happens will have enough loving people around her to be everything she will need if God forbid I’m no longer here. But I like you plan to make sure I will be. Your daughter is very lucky to have you all to herself.
Glad my post has lured you out from the shadows Gosh, looking after five children when you have heart failure must be so hard! I can hardly imagine how you do it.
Even though I feel pretty positive about my situation now, it is that middle-of-the-night thinking that always makes me wobble. But I'm glad I can hold onto those thoughts and reason them out in the daytime, rather than have them niggling away at the back of my mind.
Feel free to message me if you ever want to vent/chat. Good luck! x
Hi Laura.... I so recognise what you are saying. And as had the same thoughts when my son was 5 and in my head I thought it would be better if we weren't so close... so my crazy logic at the time do ate that I push him away.. was a little more distant... until he said " mummy why don't you live me anymore" it broke my heart... I went to counselling to get help to get me over this... and to be a better mum for my son.
Ryan is now 24 and as you know my heart deteriorated recently... and this worries me still... as he only has me... doesnt even have a dad around.
I have on a practical front written out all my worth ( pensions/life insurance policies etc) along with any debts ( loan/sofa payments etc) I have shown this to Ryan so he knows the practical stuff for if anything happens to.me. I have also listed all monthly payments.. and whicjlh ones he should cancel etc. It was hard to sit him down and show him... he said he didn't want to see.. although we had a laugh about how much I am worth dead. Black sense of humour gets us through. Now that is the practical stuff which you won't have to worry about as your husband will be there... but it's worth noting in case others need to consider this too.
So the emotional part... how does anyone ever prepare for a parent potentially dying whole outer children ate not old themselves. Now Laura I am not saying this will be you Hun, but as this is a worry for you I think you need to put something together to help you feel prepared. For me I have written Ryan a letter... which I add to each year... to tell him how much joy and love he has given me. I have written of specual moments/memories... the silly things that only we know... so he still has me ( via the letter) to remember them by. I have a cry every year as i add to this letter... abd as he has grown ( into a dine young man) my hopes for him have moved forward to... from wanting him to get the best from school and friends, to now follow his dreams and his heart. And if i am still writing tuis letter in years to come who knows I may be talking about his children's future... but I don't want to think that far. Now is what's important ( an aside: my son has just shouted " I love you mum" from the other room as i write this.. yes we are still incredibly close) but he now has a job.. good friends .. goes on lots of holidays... but yes its still a worry.
I also write that its ok to grieve, however once he has grieved, i want him to go out into the world and smile and laugh and just be. And every time he laughs and each time he smiles... I will be there with him. And know that the best is yet to come... and that i will always be there .....
I don't know if this is ant help Laura but it has helped me over the years.. and as he has got older he has understood more about my wonky heart... it has scared him ... but over time he has accepted it and understood that mum has a condition and nay not be there when he is 60 ( this is the age I felt comfortable saying.. so it still feels a long way off) whilst trying to bring in an understanding of my mortality. I didn't do this until he was early 20s ... I wouldn't have wanted to burden or worry him as a child. And I have just slowly introduced that mum isn't as healthy as other mums over last few years of course the recent ops have made Ryan much more aware .... and he has taken me to hospital etc so has seen at first hand. I did at first try to shield him but the doctors told me that was wrong and that he should be included... and he even came with me to a consultants appt. And actually he was a rock... and told me they had given me hope so we must take it!!
I will also say Laura that I will try my best to be here in another 20 years... however I aim for 5 years at a time...and so far it's worked. I think our children will be more prepared than most... as we have had the time to think about it... and we may not be there when they are 60 but the fact that we have loved them and given them our time and wisdom .. is not something to worry about.. but think of it as a great foundation for them as they move through their life. And I fully expect you still to be posting on BHF when your daughter is 24 ... with perhaps a letter in the background... that you have been adding to each year... much love and hugs 💕
Thank you, Karen. It's funny to see how differently we have handled our situations, but with the same goal in mind. I've been very open (maybe too open?) with my daughter when it comes to my heart and I have held her close (maybe too close?) rather than pushed her away. I guess it's good to see there is no perfect solution and we all just do the best we can. The way you talk about your relationship with your son is always a massive comfort to me. I will message you later x
Like you have said in the past we all need to stay positive with this s--t illness. I thought of you the other day whilst out shopping, I was at the Wonky section and smiled to myself thinking that's what a few of us have it's just a Wonky Heart in our case. I don't know if you saw a reply I posted the other day about a visit to the HF Nurse we talked about progression and the planning that will be needed. I am not afraid of dying but like you there are some landmarks I still want to reach long before I do !!!
Sorry I can't answer the question on what represents grown up, at 71 and a Grandad who has been married for 50 years my wife still says when are you going to grow up, so you are looking good for a 100 + years at least. This wonky heart business really makes us grow up having to face up to what the future may hold is not that easy. Last night my personal thoughts at 3 in the morning was do I really want to pass away in a hospice or here at home, I still haven't decided (chicken he thought to himself ).
I am still trying to build memories for and with my grandchildren so hopefully they will think " Grandad was a pretty OK guy " as I am sure you are building memories with your daughter. I know this is not much help I am just trying to show I for one understand the pain you have to pass through with this wonky heart business, the thoughts we have are not for us but for our loved ones.
Love that you think of me in the wonky aisle, Frank! Your comments always make me smile Lots of love to you x
Hi Laura, like yourself I so wish they could tell us something, anything about the progression of this horrible condition, I had another cpet last week and will get the results at the jubilee tomorrow always a worry in itself if things might be worse now, my two boys are grown up so unlike yourself I don't have to worry about leaving them, although they might have something to say about that lol, bank of mum gone!! 😱 It must be so much more to worry about with the wee one so young, I think the letter and or a picture album is a lovely idea she will know how much you loved her even though she already knows this it will reassure her in dark days, but you don't seem to be going anywhere at the moment, back to the gym is great I could never do that, walking and not very far and not even every day is all I can manage, I am also going to sort out my affairs and let them no my wishes re funeral etc, I always seem to plan it at 3am then forget to write it down, 60 in two weeks better get on with it, take care char xx
Thanks, Char. Hope you begin to have more energy at some point, sounds like things have been tough. Also hope you get good news about your CPET, let me know how it goes. I haven't done a CPET in over a year now but have one coming up in December (happy Christmas?!) so will see how things are then. I predict...STABLE! But I will take stable, and gladly. I use the CPET as motivation in the gym, think of myself as in training for those 15 minutes on the bike in December. Ha! Lots of love x
Goodness, this has got me in tears this morning. I often think the same thoughts laura_dropstitch . It's the knowing you've got something that means your card is marked, so to speak, yet not knowing exactly how long you've got, which is the hardest for me. I have two girls, 4yrs and 6 months. The 4 year old often gets upset if I'm away for a day or two as she misses talking to me. I worry, like you, that our chats (which I love) are somehow selfish and will potentially make it worse when the time comes. My cardiologist tells me to live life etc., but it's hard to do that when you feel like your heart is a ticking bomb.
I hope to live until they're 20, with the thought that, while that's obviously not ideal, at least I've helped them (and my wife) through the tricky first steps of life. However, given that means I have to stick around with heart failure and various arrhythmias for another 20 years, I'm not sure I'm going to achieve my aim. To offset my fears, if one can ever do that, I've been writing a word document for each of them. They aren't beautifully written, but hopefully they capture something of my love for them and of our relationships to date. Every so often I tweak the words and update the text. I'm not writing everything down, as I don't want to leave them a 20 page tome, but I'm trying to give them something
to hold on to, other than what memories they will have.
It's difficult, and no one knows what's the right thing to do. Forums like this help, and just being able to offload is really valuable. I think we need to be more like goldfish and live in the moment. No one ever knows how long they have, and things can turn in an instant, so the only thing you can do is take a deep breath and grab life with both hands to wring out as much of the good stuff as you can.
Hey, you're a mum and we worry about our kids every day of heir lives. They will never be old enough to lose you. I lost my parents when I was mid 40s and still felt bereft like an orphan. I'm 70 now, just had a heart attack and my son is 30 and hasn't yet got a partner. I desperately want to see him settled with a family of his own. But my point is, my mum had toxaemia when she had me and it damaged her heart. She got pregnant again and lost that baby but that pregnancy and toxaemia again did more damage. She was diagnosed with heart failure in her 20s. She died at 69. She would probably have lived even longer if she hadn't been a heavy smoker with a lousy diet but people weren't given advice in those days. SO stop worrying, live life NOW and enjoy it. Heart failure is no longer a death sentence if you live healthily. You could get run over by a bus tomorrow.
Thank you, Qualipop. I can imagine how desperately you want to see your son settled. I'm sure many parents feel similar, regardless of heart disease. I really want to live long enough to know what my daughter is going to do with her life, but doubt that will happen since I haven't even decided what to do with my own life yet - ha! Good luck x
Thank you for your kind replies, everyone. Sorry not to have had time to reply to you individually as they were coming in - had the limpet child attached to me the last few days, ironically! She even wailed the immortal words, "I just never want to be separated from you for even a second!" when her dad tried to do the bedtime thing the other night. I was glad he was there to hear it - ha ha!
I don't think any of you have suggested anything I hadn't thought of myself, but it is so nice to know that other people have had the same thoughts/worries as me and it does make me feel better. I really appreciate you all taking the time to reply. Onwards and upwards!
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Gosh, looking after five children when you have heart failure must be so hard! I can hardly imagine how you do it.
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