BEREAVEMENTUK SUPPORT FORUM
Bereavement Support Posts => Please Post In This Bereavement Support Posting Room => Topic started by: JTC on July 04, 2020, 11:15:37 PM
-
Hi, my dear uncle had so much to live for, he had heart failure symptoms which had to be controlled with medication but he still really loved life, he was interested in and appreciative of the people around him and was kind to us all. He was a positive person. However during lockdown he had to socially isolate and his heart symptoms got worse, to the point that there was no other option but to admit him to hospital. They had to try and reduce the fluid in his body caused by his heart failure. For some time the medication didn't work and we were at the point where if it didn't work within 24 to 48 hours there would be nothing else they could do. Then, at the last minute, the drugs started to work. We rejoiced, as he started to get better, that Sunday he was so bright, he phoned us all from hospital (no visitors were allowed) and we were so happy to see how well he was doing. B4 he went into hospital he had tested negative for covid, so he was able to go straight to a ward without covid. A week later he was tested again, still negative, then after another 7 days he tested positive, so he'd caught it on the ward. At first he was asymptomatic and they told us he would be coming home the next week, we were so happy, we rushed to get everything ready for him, we were told he'd be out within the next day or two, it seemed so wonderful as his 90th birthday was due in another week or so, and he had so wanted to get to 90. We planned a socially distanced party for him, we bought presents for him, then within a day or two everything seemed to change, the covid seemed to be taking hold. He got worse and worse and then within another week it had killed him, so he died two days ago. It seems so heartbreaking and unfair. Sorry to share such a sad story with you, but we are so upset, that his recovery was within his grasp, he could come home to us, and then things changed so suddenly. I won't go into the way that last week progressed, but we just want him back,he was meant to be coming home, they'd sorted his problem out with his heart, he'd been so good during lock down, it was to be a new start for him, his birthday, maybe a chance to get out and about a bit again, to do the things he loved again, now that his heart was better, but then it was all over. It's not fair, he didn't deserve that. and he didn't make his 90th birthday, he was short by 5 days. He had some of cards open anyway, on his bedside table in hospital, wehope he got some pleasure from them. But he was such a lovely kind uncle, this shouldn't have happened to him, i feel so angry upset and sad
-
So sorry to hear of the loss of your lovely uncle, JTC. Sending you an understanding hug. :hug: Your story reminds me a lot of what happened when my mum passed away two years ago. She went into hospital with a stroke and was getting better from that, but had to stop taking her heart medication as a result and died of the problem with her heart instead. She too loved life and was a lovely person and I was desperate to get her home again, but didn't manage to do that. She was 96.
I don't think it matters what the circumstances or age of the person are, you still feel robbed and are left angry and sad. These are all normal responses to such a terrible event and everyone here will recognise the feelings you describe. It is so hard to lose someone so dear to you and especially when they seemed to be getting better.
Covid is an awful disease and I am so sorry your uncle caught it. It is so unpredictable and so dangerous to anyone with another major condition. Your uncle still made it to a very good age, but I know, my own mum having been even older than that when she passed away, it is never something we are prepared for and we are never ready to lose them. We always want to get them home again. That was all I wanted at the time.
Your memories of your lovely uncle will always be in your heart and mind, so he will never really be gone from you, because you will always remember him. Try to be kind to yourself at this difficult time. We are here for as long as you need us. :hearts:
-
Thankyou so much Sandra it means a great deal that you took the trouble to reply to me and to offer me comfort and understanding and reassurance.I'm so sorry that your lost your lovely Mum, I'm sure she would describe you as lovely too in that you are helping others so much on this forum (and in lots of other ways too I'm sure), I feel sure that she would be very proud of you.
You mentioned that the coronavirus is unpredictable. I certainly think that the unpredictability in general was part of the problem for me, the fact that one minute he was about to come home even though he had tested positive for the virus and the next it suddenly seemed to all change. The doctors seemed to genuinely really care but it did feel that we told one thing, good or bad, and then we would start to get used that being the new reality, and then it would suddenly all change again. Likewise with his heart when he first went in, we were after some time told that things were really dire, and then suddenly it seemed to completely change and he was really good, then likewise with the covid he seemed unaffected for a while and then suddenly it seemed as though things had got really bad. There had been so many ups and downs, and as I said, when we heard he was coming home, it seemed as though all the rooting we had done for him had worked somehow and that at last we had the happy ending we had been desperate for, the change for the worse again seemed so sudden, then even after that they thought he was improving but then suddenly he wasn't but he was stable, then he got slightly better, then slightly worse, so we didn't really know until the last morning which way things were going to go, and we had only just started to take in the news on that last morning that they were going to stop treatment and start him on palliative care,and then after a few hours of that he was gone. At least we were told his last few hours were peaceful. In terms of communication, because laterly he was on the covid wards, they had a policy that patients liaison were often the ones to update us, and their reports were often very basic and therefore misleading, and sometimes we'd hear one thing from a nurse then half a day later a different thing from the doctors. Clearly the newness of covid means that we can't read up and get a clear picture of patterns, and of course even the doctors don't really fully know how likely it is that, say, the lungs would be permanently affected in someone, although of course some patterns have emerged. It must be very hard for the doctors. They did try him on that steroid that has proved helpful, in that respect they did try.
The fact that the points system had previously come in, to decide who could be eligible to go onto a ventilator, well it meant we didn't know what to believe, the doctors catagorically said that they weren't using the points system any more, and that the decision not to put my uncle onto a ventilator was purely a clinical one, and that even if they'd had 100 ventilators free it wouldn't have made a difference to their decision, and as I said, they did seem genuinely to be very caring, and to do their best to take time to explain things to us, but it still leaves doubts. I felt i wanted to protect him, to fight for him that maybe I needed to keep telling them how valued he was by us, so that they'd realise how important and precious he was. I know of course that all patients are precious, and of course i know they felt that too.
Anyway, it has helped me a lot to share this. Thankyou so much.
-
Just to add that because we couldn't visit due to covid, even before he caught it, that meant that whoever had received the medical reports that day would post them on email so I guess that's good that I've got all the ups and downs documented, so, although it would be very painful to look back at them, I will at least, in time, be able to read them back bit by bit, to try and understand and orientate myself a bit more, and to take it all in.
-
Thank you for your very kind words, JTC. I am sure your uncle would be very proud to know how hard you fought for him too and how much you love him.
I think it does help to get the medical records. I did the same for my mum. You do at least seem to have had a good experience of how your uncle was treated in hospital, so I hope that does bring you some comfort, though the communication at such a desperately busy time sounds as if it was understandably confusing. Though it's likely that the improvements and the slipping back were exactly as described. In my experience, this is often how it goes, especially with the elderly. They rally and improve one day only to deteriorate the next, so it may well be that this was exactly what happened.
I know it is hard to let go of those last days and take a step back from them to try to see they more general entirety of your uncle's life, in time, you should try to do this. Hard as those last days and weeks are, they do only make up a small part of lifetime and you have to remember that that lifetime was filled with many good times as well as bad and try to focus on that as time passes. I think most people find that very hard to do, but it does get easier as the weeks go by. Writing about how you feel does help a lot, so feel free to do that here or to keep a daily record of your thoughts and feelings privately. I did that and do find it helps. Also it enables you to go back at a later date and read it over and helps you see that over time, you have made progress in coming to terms with things.
You might also put together an album of favourite photos of your uncle or put some items of special sentimental value in a memory box. This can help you redirect your focus onto the happier memories you have of your uncle. In time, you might like to consider something more as a tribute to him, planting something in a garden so you can go and sit there to think of him or having a bench placed somewhere or special significance for him. All these things can help, but for now, just take each day as it comes and be kind to yourself. Do whatever you need to do to get through each one and slowly you will find your way forward.
Sending strength. :hug: :hearts:
-
Sandra, thanks so much your words have helped me a lot and it has been so reassuring knowing that you and the forum are there. I'll check back in as soon as I can. xx