I can’t stop thinking about everything that happened in the final weeks before my father passed away.
We had 8 weeks with dad from diagnosis to him passing away and they were not peaceful happy weeks like you see in films. They were chaotic weeks filled with emergencies, confusion, a hospital admission and a lack of dignity.
I feel tormented that my dad’s wonderful life ended in this manner. I’m sorry that I didn’t question the GP giving him morphine pills which caused confusion and the start of his decline. I feel terrible that he spent a day at the cancer centre getting radiotherapy on his spine and it caused him more pain not less.
I’m sorry that I told him to proceed with a bone marrow biopsy because doctors mistakingly told us it must be a new cancer. I regret telling him that he needed to stay in the hospital to ‘get better’ when he wanted to come home. I regret taking him for a flu jab because I wanted him to be fit for treatment that he wouldn’t even be offered. I regret telling him to eat and drink when he couldn’t because he was in the stages of dying and I didn’t know.
We were told he would come out of the hospice once the confusion was under control but he was sedated and never came round. He didn’t get to die at home like he wanted.
I can’t get these thoughts out of my mind. Guilt, anger, sadness, regret. Repeat.
I regret so much of it. I’m sorry dad, I feel like I failed you when I was the one person you trusted to look after you.
Hi @Katherine86 I don’t think many people peacefully drift away like in TV/movies in this situation. You don’t have anything to reproach yourself for, as everything you did was motivated by love for your dad. What daughter wouldn’t encourage their parent to eat to keep their strength up, or to follow doctors’ advice. Nobody can see the future and nobody in our situations makes perfect calls every time with the benefit of hindsight. I know that won’t make you feel any better right now as I know the guilt demon gnaws away at us at this stage of grief. But never convince yourself you failed him. You were there for him, doing your best, and that’s all any of us can do. Sadly we’re all going to reach the end of life and chances are it won’t be like it is in the movies for most of us. All we can hope is that there’s someone with us, doing their best for us as you were.
Take care and keep posting. Jack x
Hi Katherine ,
I too feel guilty about all sorts of things. I have spent tonight wishing I hadn’t done certain things like phoning 999 and them taking her into hospital. I just wish I had told her to wait another day before i phoned as i know she didnt want to go into hosp. She was being sick so much I was so scared.
I questioned lots of things at the hosp but I wish now i had questioned even more.
I have such bad memories of her time in hosp. One nurse was horrid and kept saying to me that they would not let my mum suffer . This was when my mum wasn’t in any pain at all. Every time she came into the room she said it .
When she came home she had the shringe driver in place and it broke my heart watching her slip away. I tried everything in my power to save her just everything.
I have all the emotions you are going through. I just want to see my mum so badly
Thinking of you
Deborahx
I feel the same way as you my husband hated hospitals and i made him go as he was really unwell he wanted to be at home when he passed and i feel i took that last wish away from him he was being sick and there was blood in it . It turned out his liver was shuting down
Aww Sue,
I feel the same as you If only I had done this that and the other springs to mind
My mum was being sick constantly throughout the night and it was yellow bile stuff. The next day she was fine just tired after the sickness Then the next night or early hours of the morning she started being sick again. This time it turned into brown stuff so i knew something was changing and needed help. I phoned 111 and they were alarmed so told me to ring 999 as it was an emergency. I did that and they took her into hosp. One doctor told me it was an infection and she needed antibiotics. When i went to her house for clean clothes another doctor phoned me saying they had done a scan and she had a blockage in her small intesteine.It was at a place they couldnt get to without an operationa nd as she was 89 yrs they wouldnt operate I was devastated In the same convo he asked me about resuscitation !!! All within 30 mins of leaving the hosp.
Still wish I had waited and tried giving her a laxative. Maybe sounds stupid but that’s how I feel
Thinking of you
Deborah x
Hi katherine 86,
It seems that a fair amount of people on this site are giving themeselves a really hard time over decisions made during critical times at the end of their parents life. You went along with doctirs assessnents, which ended up beinv being a mistske but how the hell were you to know that. We go along with the experts, nearly everyone would do that, which your Dad would expect you to do. Were ther any crystal balls available?!
We really want to do the best thing for them ans we make decisions in the momenf that we really do think is the best course of action. Of coursd its natural tgat we assume sending them to hospital is where they are going to get the best treatment . Emergency decisions are best made there! Not always but its appropriate to put our faith in them.
Really, the fact that we’re seeking support and validation on here shows that we’re not thoughtless careless people.
It seems to be an expectation (as someone else said) that he new standard is a peaceful passing. Its totally unrealistic (unfortunately), we’d all want that. I expexted that, too and it didnt happen .
Im beating mysrlf up but thankfully with a bit of time anď talking to a lot of people has shifted things a bit but theres room for improvement. Apparebtky its usual for people to do this so that they feel a sense of control, which they dont have. We do have some influence but thats all. Its unbearable otherwise to consider that our parent will die and we cant stop it.
My mum wanted to be at home but the doctors decided against it but a part of me wishes Id have kicked up a fuss but we didnt actually know exactly how long she had left, just like nearly everyone in that situations.
Hopefully you will shift this a little soon then some more another time.
Hope Ive not babbled on too long.
Mazza x
At the time I was doing what I thought was best, but as you say the doubt and guilt creeps in. The doctors told us it was a new cancer and because it was just in dad’s bones and not any organs I thought we would get more time and it would be treatable. I feel like if I was told that it was likely the original cancer I knew the prognosis was poor and I wouldn’t have spent time trying to research what might help. I just wish I hadn’t spent time telling him that we might get more time (dad knew we wouldn’t) and instead just accepted what was to come. As soon as I found out it was the original cancer I knew there was no hope and dad was in hospice the next day.
My dad knew I loved him and I hope that gave him comfort I don’t think I’ll ever feel like I did enough because I couldn’t save him.
I will keep posting it helps to get my thoughts and worries out.
I’m so sorry that you are struggling with these feelings too. It’s terrible to see your parent in the hospital knowing they don’t want to be there. I’m sorry you had a bad experience with the nurse it makes it so much worse.
When my dad was in hospital he kept getting up and walking around but he was unsteady on his feet so someone would sit with him when we were not visiting. I would walk him to the toilet and he would just tell me that I had to get him out of the hospital as they were never going to let him leave. It’s very upsetting but mum and I couldn’t keep him safe at home at the time because he was so agitated. I remember vividly how excited he was to go home and the hope that he has improved so much only for him to deteriorate again a week later. He died two weeks after leaving the hospital and no one told us he was so close to end of life.
Every moment of those weeks are etched into my mind for eternity it feels like. I don’t know what the solution to this is or how I’ll ever get over it. I miss him so much!!
What you said about making decisions based on doctors assessments is right. In my logical mind I know that I am not as well equipped as a doctor to make decisions about my dads care and passing but for some reason my mind tells me that I should have known or done better. Maybe it is a form of self torture or just part of the grieving process I’m not sure, it makes the grief more difficult though as it feels like I am just stuck.
Prior to my dad becoming unwell and passing away I had no experience of serious illness or death. I think I had unrealistic expectations that my parents would just grow old and pass away or maybe I hadn’t even given it much thought as it scared me too much. I don’t think there is much awareness about end of life from cancer. We were not given any information on what to look out for and it wasn’t really discussed, possibly because they didn’t expect dad to pass away so quickly. It was only when I was with dad in hospice that I realised he had been in the stages of dying for the week prior and I wasn’t fully aware.
I wish I could find a way to not focus on these thoughts. I know my dad would tell me I took care of him well, maybe I need to learn to not let my mind try to convince me otherwise.
Hi Katherine.
Every moment of the time mum was in that hospital will be etched on my mind also. Thank goodness I eventually managed to bring her home . We had wonderful quality time for the last 3 weeks. In hospital it was awful. They starved her for 17 days then when she was allowed home they said she could eat anything ???. It was too late then as she had lost so much weight and was so weak. I tried everything to keep her longer but realised in the end she was never going to pull through it. The closed loop she had in her small intesteine stopped the blood from flowing through so the tissues died so she had no chance.
People tell me time helps but I can’t see it either.
Thanks for replying
Deborah x
It seems like hospitals are not a good place to be in current times. It’s good that you got your mum home and had quality time with her. It was kind of backwards for me, I had good conversations and quality time with dad right after diagnosis and then for around 5 days after he was discharged from hospital when it seemed like he was improving. The rest of the time wasn’t ideal but I don’t think it could be in the circumstances.
I think in some ways my dad passed away before things could have got much worse. He said to me that he wondered if it would be easier on us if he left quickly, I of course said no but he said he didn’t want me to be so traumatised by something that I wouldn’t recover from it.
I really hope in time the memories from when he was ill are no longer at the forefront of my mind and I can focus on all of the happy years we had.
Aww Katherine my mum said similar heartbreaking things also to me
She said Dont cry Deb maybe I will have a miracle.
I never talked about it with her even though the pallitive care doctors came into the hosp room one day and without any warning to me told my mum she was dying and asked her how she felt about that She said sad and they said yes thats ok to be sad. Honest to God !!!. We never mentioned the covo after they left the room except for me to tell mum she needed to build up her strength to get the hell out of hosp
I feel so angry about the way the hosp treated her
Deborah x
I agree that it’s so difficult to let go. I am really struggling with the finality of it all. I just cant grasp the fact that I’ll never see or speak to my dad again in this lifetime. It fills me with dread, he was so much fun. I miss everything about him.
Exactly the same for me @Katherine86 . I feel like I was caught up in a tornado of shock and organising things in the first weeks , and now it’s dropped me back down to earth the permanence of this is far more painful. I look at photos of him from last September, looking fine and happy, and think “how can he be gone forever”. How can I survive decades ahead without his love and support and just his presence. How?
I know exactly what you mean. The enormity of it is something that I don’t think I’ll ever come to terms with. I also have photos of my dad up, from July when we were on holiday and I can’t understand how he could be dead 4 months later. It is just unbelievable to me that someone who was always so fit and full of life can just be taken away.
People say that time heals but it has been three months and if anything it feels worse. I miss him more everyday and when I try to picture him walking through the door it somehow feels odd like I can’t imagine what it would be like. It’s very difficult to try and explain. My brother tells me not to try and imagine it but I feel terrified of forgetting his voice and mannerisms so do try to envisage him.
We are a close family but my dad and I had a connection that I don’t have with my mum and brother. We are so alike and just got each other, he was my favourite person to spend time with. It sounds terrible to say but the void left behind can never be filled and his loss just feels even more apparent when I’m with my mum and brother as it’s not the same.
I hope it isn’t always this painful but can’t see how this will get easier at this point.
The only way i can see it becoming less painful is if he recedes into the past in my memory, and i dont want that to happen. There’s a part of me that wants to keep thinking of him 24/7 as it means he’s still with me in the only way that’s now possible.
Your family setup sounds similar to mine. I love my mum and sister very much, but my dad and I had a mutual understanding based on shared interests, sense of humour and similar natures. Now he’s gone the whole balance of the family has changed and i realise how much of my contentment when i was with the family was because of my dad. My mum and sister are very similar to each other but quite different to me and my dad.
I understand about not wanting your dad to become just a memory. This is something I am struggling with. When my dad first passed away people asked me about it and I felt able to talk about him. Now I find that no one is asking and I want to talk about him because that makes him feel more ‘alive’ to me. When I would message my brother to talk about dad I would get replies and now it’s long silences or a response much later in the day with things like ‘i don’t know what to tell you’. I sometimes think he would like to just carry on like it never happened or if it’s not positive news he doesn’t want to hear it.
My dad was helping me with my house and yesterday I said to my brother that all of dad’s tools are in the shed and it was upsetting. He said I would clear those out, but I don’t want to clear them out because it feels like I’m erasing him and I want to remember him always.
I understand about family contentment bring centered around your dad. I just don’t feel any motivation to plan for anything with just my mum or brother. Dad was such a part of everything and even if I went away he would be at the airport waiting to give me a lift home. He loved spending time with me even doing mundane things. It’s horrible to think I’ll never have that joy again.
Keep talking about your dad it will keep him close to you. I intend to do that, I always say good morning and good night to him too. If I’m struggling I tell him that. He told me before he passed that I must accept the natural process of life but they don’t teach us how to be without them, but I know what he would tell me.
I think it speaks volumes that they have adult children who miss them so very much.
