Hello everyone,My husband is end stage heart failure and I am hoping for some advice. He is such a determined man, that he won't rest. He actually nods off standing up rather than going to lay down. I don't know what to do for the best, should I leave him to do whatever he feels he wants to do, or try and get him to rest more?
Thank you in advance for any replies.
Hi, our Dad is in this same situation too. He now lives alone since we sadly lost our Mum 6 months ago. Dad is just so tired all the time and as soon as he sits down - he’s asleep. (Often whilst holding a mug of tea!)
He is so stoic, insists on living by himself (with support from us) but we worry about him all the time. Unfortunately, Dad has terrible oedema in his feet, ankles and legs which is making it increasingly difficult / painful for him to get around, combined with breathlessness even when just sitting and talking.
The Heart Failure Nurses recently prescribed Dapagliflozin for him, which helps with the heart’s pumping function. We have definitely noticed an improvement in his fluid retention. More so than just the diuretics on their own.
He’s also on a Beta Blocker (amongst other meds) which increases his tiredness and lowers his blood pressure - which is already low anyway.
Whilst we do try and encourage our Dad to rest with his feet up as much as possible - but what he gets up to within the confines of his home, when we’re not around - who knows?! He doesn’t want us to wrap him up in cotton wool - so we try not to, as his independence is so important to him - as I’m sure it is to your Husband too. It’s just not easy to witness their decline.
Hi,Thank you for your message.
Firstly, I am sorry to hear of the loss of your Mum.
Your Dad sounds just like my husband, you said stoic, I say stubborn! I try to be understanding, but, I get so frustrated when he is falling asleep and refuses to go and rest, it's like a 5 year old fighting sleep.
It's really tough to know what to do for the best. What you said about not wrapping your Dad in cotton wool is exactly how I think my husband is but it's tough to stand by and watch.
Hiya, Thank you - it’s been a really tough time. My Mum used to say that Dad was ‘a law unto himself…’ and he’s not changed! About a month or so ago - he let slip that he’d been up into the loft. My Sister and I nearly had a fit. This is a man who also needs a double hip replacement and has terrible arthritis everywhere else. The thought of him struggling to get the loft ladder down and then balance whilst trying to step off it and into the loft - just sent us into meltdown. If he’d had a fall - we wouldn’t have known. (He also refuses to have a carer button). The trouble is, he was a tradesman and has always done everything d.i.y related at home. He really objects to having to pay someone to undertake a task he knows full well how to do himself. The other issue is that in his head - he’s still about 25 and now gets so frustrated with all his medical limitations.
So, as hard as it is, I think you just have to go with the flow re your Husband. Let him be mobile and do the things he can, (within reason) for as long as he can. That’s all we can hope for.
Hi Hidden
I’m sorry to read your post, it must be so difficult for you and a struggle to know what to do for the best.
As someone with dilated cardiomyopathy and heart failure, I would want to have some control over how I see out my days (when that time comes for me) and as the daughter of someone with the same conditions as myself, I also know how frustrating and painful it is to watch your loved one make choices about their own life when you know that they aren’t the healthiest choices or could potentially be contributing to the decline of them.
Ultimately, I would say that he’s still the same man, even with his prognosis, so be compassionate when considering how to respond to his requests/demands but hold some compassion for yourself too; it’s not an easy path.
I hope that you can find a balance that empowers your husband to feel in control whilst providing you with the reassurance that you seek.
Best wishes
Soap 🧼 💛
Hi,Thank you for your message.
I'm sorry to hear of your condition and your (Mum/Dad's) condition.
I think maybe that's what I need to do, allow him to make the decision, it may not be right or good for him but if it's what he wants I shouldn't stop him.
Thank you for the advice.
Be kind to yourself because there’s no guide book for how we should deal with the trials and tribulations of life - we’re all winging it 😅
Unfortunately it’s quite widespread in my family - there’s me, my Dad, my brother, my sister and now the specialist believes my 5 year old son may also have it based on the globular structure of his heart but it’s too early to tell yet. My 4 and 2.5 year old daughters are now being referred for assessment too.
I remember my Grandad saying to me when he was told that he was terminally ill “I don't want to be remembered for the number of years I had in my life, but for the life I had in my years on earth”. It really struck me and it’s stayed with me ever since.
I hope you found my shared experience helpful and know that your post just speaks volumes about how much you love your husband!
Take care of each other.
Soap 🧼
I quite understand your husbands reaction to his condition. When you are diagnosed with a serious condition you need to have some control. When I was diagnosed with aortic aneurysms I was scared I would be carried along with the tide of appointments, drugs and other people making decisions for me. I decided early on that I would refuse surgery when it was offered. I discussed my decision with my family and they understood my reasons. The medical profession was not as understanding unfortunately. I have also stopped the blood pressure meds and the statins which made me feel rough. I realise it may shorten my life but I did not want to live longer feeling bad. When you have spent your life being in charge of your life its not good having to become a child again I.e. having to be told to 'be careful' and 'don't too much'. Perhaps your husband would like to forget about his condition ( as I try to) and be treated normally . He is probably the best person to decide what he does. I am determined to enjoy what time I have left, I eat what I like and do what I am able to do while I can and dont' feel guilty about it. I say this from my point of view which may be very different from others opinions, I wish you both very well .
I wish I could help. All I can say is if it were me, I would fight to remain as normal as possible. Perhaps that's all your husband wants, to be an independent, self determining man. We are buggers fir that 🤦♂️
'Morning Noobear2012, thank you for your post. I'm in the severe category for heart muscle failure with an EF of 25%, I also had an unsuccessful attempt at a pacemaker implant when one if the leads pierced my heart and emergency OHS was performed to repair. I now only take lots of medication. I love gardening and now the weather is getting better I spend as much time as I can digging, pulling out weeds, mowing the lawn etc and I think if my heart gives up, at least I'm doing something I enjoy. My daughter is very supportive and let's me do what I want. I email her every morning just to let her know I'm alive and she makes me take the key out of the front door (just in case I need help and she can gain entry lol). I'll keep doing things I love and when my time is up, then so be it. Best wishes x
My friend's husband is exactly teh same. He's 87 with a very weak heart, severe arthritis in his knees and stubborn as a mule. He's still cutting their extensive hedges on his own; totally refuses to employ someone. She complains bitterly but he says, what's the point trying to extend his life by a few months if it's miserable. Much as we may dislike it we have to let them live the way that's right for them.
Hi I’m sorry to hear your husband is end stage. I’m in the same position an have been for 5 years but I’m still fighting on. I believe that’s what your husband is doing. He’s dealing with his illness the way he wants to. I use to think by moving about I’m keeping my heart pumping as much as it can and if I stop moving then my heart will stop too. Even going to bed at night I couldn’t sleep wondering if my heart is going to stop.
Have you spoken to him and asked how he’s feeling and why he’s refusing to rest comfortably?
To be quite honest I just want to do what I want to do and when I want to do it. It’s the only way I can have some control over me. I have to take a load of tablets daily to keep going and often I feel rubbish but I keep going. I have also accepted my heart can stop at any time as more and more organs in my body decline. I have lost all fear of dying, I’ve had years of getting where I am now.
Hopefully when he’s ready he will let you know where he is. Until then don’t force him to do what he doesn’t want to do, continue to encourage him by saying maybe he would be more comfortable having a sit down, he might say no so just let leave him and don’t pressure him to do anything.
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