Guilt

I’m 29 years old and I’m struggling with many aspects of my mother’s partners death which happened on Saturday night. One aspect in particular is guilt.

He had heart failure which was diagnosed following cardiac arrest two years ago. He was told to stop drinking and smoking but he carried on despite me begging him to stop.
A week last Tuesday, I arrived at their home to find him cold to touch very sweaty and short of breath. I phoned for an ambulance and he was diagnosed at the hospital with worsening heart failure, pneumonia and atrial fibrillation. He was put on warfarin and antibiotics and his general water tablets were changed. He was then discharged on 21 September and he was going back and forth to the hospital more or less every day to have the bloods checked on the warfarin.

Then on Saturday 29th I arrived at their home to find him not well again, but he wasn’t in as much distress or discomfort as he was the last time I called 999. He didn’t look well but he was eating, drinking, walking and he was adamant he didn’t want medical help and that he was not in any pain. He was very happy to be at his home and enjoyed a full dinner. I left and his last words to me were ‘dont worry, I am feeling calm, if I feel unwell you’ll be the first to know’.

I then got a phone call at about 9:45 to say that he had been asleep but he was making some very strange noises and his eyes had rolled back and had stopped breathing. Mum has started CPR immediately and ambulance were called. As fate would have it I was about 3 minutes away so I came straight away and took over CPR. Ambulance worked on him for half hour but he’d gone. I believe he went very suddenly.

Is it normal to feel that you could have potentially done more to help? These pangs of guilt are debilitating.

Hi some of the things you have said I felt at the beginning and still do sometimes my partner died suddenly in May from a heart attack one time he told me he had a pain in his chest which passed quickly we both thought he had pulled a muscle as he a cough for weeks a few weeks passed I can told him to get checked out which he did he was told he might have a blocked artery and was put on medication he still confined to drink and smoke every night which I warned him about but he didn’t listen I sometimes blame myself that I should of got him to go straight to a and e when he got the pain when he collapsed myself and my older son gave him CPR until the paramedics arrived they took him straight to hospital where he sadly passed like myself you tried your best .
Take care
Christine x

Hello,

From what I have read, no-one could have done anymore , you sound like a really fantastic young woman, certainly one to have around when you are sick.

It isn’t unusual for people with heart failure to suddenly feel well, eating well and generally feeling much better and then just as quickly to deteriorate as your mother’s boyfriend did.

His heart had reached the end of the road as had his lungs and the rest of his body.
It sounds as if there was nothing anyone could do that would improve the situation even if you had managed to get him to the hospital again.

Most people have some feelings of guilt believing that …if only…
You did your best and I’m sure if you ask her your mother will think the same.
Please be kind to yourself, you did an amazing amount of care for that man.

Thank you so much for taking the time to reply and for sharing your story. One of the hardest lessons for me to learn from this experience is that you are not in control of other people’s lives and choices, and all we can do is do our best. I think we both did our best x

Exactly so keep telling yourself you did your best .

Take care of yourself
Christine x

Thank you so much for your very kind words. It brings me great comfort, and hope. I also wasn’t aware that heart failure patients can go downhill, which I have found helpful to learn. What I am trying to hold on to is that if his death was inevitable that night then at least he was calm, in no pain, he wasn’t frightened, he was in the place he loved with the woman he loved. I tried my very very best for a long time to keep him here - but it wasn’t to be. I stayed with him all night during the hospital visit on the Tuesday to ensure he wouldn’t be alone and he promised me he would stop smoking. It was the day he died that he had tried to buy some cigarettes, albeit without success! Some things are truly beyond our control. Thank you again

Hello TeaCups I was touched by your post… My Husband had a massive heart attack with very few symptoms and at admission to hospital was also found to have pneumonia and this resulted in congestive heart failure. We thought we’d been lucky but 10 months later he passed away from this condition of CHF as it went worse very quickly. He’d been discharged from Hospital on End of Life care with weeks to live but it turned out to just “hours” as he passed away shortly after discharge. I was alone and frightened and didn’t know what was happening. I understand about the Guilt, it’s truly debilitating. All the What Ifs and If Onlys, I’m the same. Heart Failure though is so difficult to control I believe, the medications damage the kidneys etc and it’s unpredictable. I think where there is grief there is guilt, as normal as it is it is incredibly painful. You must be intense shock so the feelings are probably heightened for you and will naturally subside with time. If they dont, please don’t suffer in silence, talk to someone about it. I know I’m not very helpful but I wanted just to let you know that Heart Failure is sadly in control of itself and we don’t have a say. You are obviously a very caring and sensitive person and I’m sending you compassionate thoughts, be kind to yourself. x

Dear Tina, I really mean it when I say thank you. Thank you so much for your reply. I had woken up feeling very sad and very anxious and your response had brought me some relief. I am so sorry that you had a similar experience. You are helpful and your response has helped me x

Hello Gogs. What a lovely, kind reply you wrote to Teacups. My Husband had HF and what you wrote about how the condition can quickly worsen was a comfort to read. Knowing that I wouldn’t be able to alter the inevitable outcome. It’s hard Gogs isn’t it and I send love to you.

Hello Tina,

Yes, it is hard, my own husband died of heart failure just six months ago. It’s not a nice way to die and I hated seeing him struggling so much, at times navy blue in colour.
His first trip to hospital and they started him on ‘end of life’ care and said it would be about four days.
Two days after that he was sat up eating, talking and breathing ok, as if there was hardly anything wrong with him and two and a half weeks later her deteriorated very quickly and died at a point I wasn’t expecting it.

Once the heart fails there’s no return that is permanent. The whole system is slowly closing down, the lungs are failing and as those two determine blood supply and oxygen to the rest of the body, the body starts to deteriorate.
It’s not living at that point and I knew that I didn’t want my husband to live any longer just to keep me happy
Whatever you did or didn’t do Tina believe me it was all OK, I’m sure you gave your very best, beyond that we have nothing. Medical intervention won’t solve the problem at that point.

I wish you well and I hope you have moments when can enjoy some of your family and friends knowing that you have earned it.

That’s right Teacups, there was nothing more you could have done.
A failing heart won’t repair, it can’t take a short rest, it has to keep beating 24/7 to supply our body and brain with blood and oxygen.
When it starts to fail so does blood and oxygen, the life force not only of the body but of the heart itself.
No-one can stop that process so be extra kind to yourself, you are an amazing girl.

Hi everyone I just wish James got himself checked out sooner and he might still be here he kept a lot from me the pains my sister’s partner my younger son played football with him and they said he looked if he was struggling sometimes this had been happening for a few months which I knew nothing about plus the he had this cough I always tell people get yourself checked out however big or small.

Christine x

Thanks so much for your kind reply. I would have acknowledged sooner but I hadn’t been able to remember where I had seen your post. It was the 2nd anniversary for me yesterday as well so I’d been a bit absent minded as well. Keep going TeaCups and thanks again.

I’m so sorry, Christine. I can relate - the feelings of ‘what if’ are crashing over my like waves. Once I’ve analysed one ‘what if’, here comes another (eg I should have called ambulance sooner, or I should have stopped the hospital from discharging him).

The most difficult aspect I need to come to terms with is that people are ultimately responsible for themselves (unless of course you are a child or mentally incapacitated). I suffer with an inflated sense of responsibility for others and, for the most part, it has taken over much of my life. I found it really really difficult that my mother’s partner (mark) carried on smoking despite suffering one cardiac arrest, I just couldn’t understand it but despite me telling him not to he still did it. But he was in control, it was his call.

All we can do is share our experiences with people and hope that they will take it on board. Beyond that there is nothing more we can do.

Let’s hope that by sharing our stories and experiences it will help someone out there x

Hello Goggs

Thank you so much writing that insightful and touching reply. My heart goes out to you, as it does to us all here. They always said at the Drs that a pacemaker would give him a few more “good” years as a “last resort” so although knowing HF is a serious condition I didn’t think we’d reached past danger level as he was still on drug therapy. I can’t even comprehend how you must have felt on that ‘end of life’ care decision ( which at our hospital was less than not good). Its all so very difficult to come to terms with isn’t it, but once again I truly thank you for your reply.

Hello Christine I’m sorry for your distress.My Husband too had a bad cough and had had it a while. I remember going to the chemist and asking for something he could take for it that was ok for high BP. It was winter though so coughs were common. Then he had this massive heart attack. There were hardly any symptoms. When he got to hospital he was told he had pneumonia, again a surprise. I often wondered if the cough was instrumental in the heart attack, like a precursor to it. Sadly we aren’t Drs and can’t know what we can’t know. x

Hi Tina thanks for your reply it’s so true we never think a cough or not feeling 100% can be anything serious we can’t forsee things.
Christine x

Thanks for your reply my mind is full of ifs and why’s but I know I have to try and deal with my grief as best as I can.
Christine x

All, I am struggling. I can’t see a future anymore and it is breaking my heart to see my mum so lost and upset. I am an only child so I feel the responsibility weighing heavily upon me. All I want to do is protect my mum.

Hi it’s hard but all you can do it’s be there for your mum and support her make sure she opens up and doesn’t hold anything in I find myself putting a face on and it makes me feel worse I’m sure you are doing your best.
Christine x