In October last year, my dad was diagnosed with lung cancer at 81 years old. We were very close (my mum died at 54 from ovarian cancer when I was 19) and although he was such a strong, independent man, the last few years he struggled with ill health, and so I’d taken on the responsibilities of driving him around to appointments and taking him out for lunch if he felt up to it and just trying to keep him going. I also cut back my working hours to make it easier to juggle family life and help dad.
He accepted my help, though I could see how difficult he found it to have to rely on me (he was a very traditional ‘man of the family’ and didn’t accept help too readily), so I was careful not to ‘fuss’ too much and always tried to respect his wishes when he wasn’t up to seeing me, which became harder this year as he seemed to distance himself from everyone and I didn’t want to be hovering around him when all he wanted to do was sleep and be left alone. I should also point out he lived with his long term partner whom he had met some time after mum died, so he didn’t live alone and we were aware that she has alzheimer’s.
Six weeks ago, I went to see him after a three week busy spell (my son was ill among other things), but I had been ringing to check on him every few days and speaking to his partner who was telling me he was ok, but I’d started to get a little concerned that he wasn’t answering the phone. When I got to his house that day, I found him in bed, dehydrated, confused, unable to move and in pain. His partner was also very confused (I now realise that she was telling me on the phone he was ok when he actually wasn’t). I got him into hospital where he stayed for three weeks where they discovered his lung cancer had spread to his brain. I made the difficult decision for him to go to a nursing home near my house where I visited him every day until he died two weeks ago.
Now, even though I know he was ready to leave this world, and that I did what I could for him, I am filled with a feeling of complete emptiness and regrets about so many things. I did not expect to feel this way as I know I did lots for him over the last few years, but why didn’t I see any signs that he had got so ill, and did I make the right decision about the nursing home? I know he probably would have preferred to be at home but social services and the nurses at hospital agreed he couldn’t access the level of care he needed at home and hospice wasn’t an option. Since going back to his house, I’ve realised just how ill his partner actually was, and so my poor dad probably wasn’t being cared for at home in the loving way he cared for my mum when she died. I so wish I had seen these things sooner and got him the help earlier, and that I had asked him about his end of life care so that I could make more informed judgements. I just could never bring myself to have that conversation with him. I was expecting the sadness and have encountered grief before when mum died, but this time it feels so much more complicated.
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I think what you describe @susieb is not that unusual following a bereavement.
Part of grief, I think (I’m no expert, just a fellow bereaved human being) ,is the “what ifs” and “if onlys” that torment us in our sadness.
The reality is, of course, we are looking at these situations with the benefit of hindsight.
I find the grief hard enough to cope with without adding mental torture into the mix.
I think we all probably find ourselves mentally gravitating towards the “why didn’t I”, “how did I not see that” sort of thoughts and the truth is, they don’t help.
When I find myself wandering towards that way of thinking, I consciously stop myself and remind myself that I didn’t know then what I know now and, truthfully, we all just do our best.
In short, Susie, focus on what you did do for your lovely Dad rather than what you didn’t do and remind yourself that above all else you respected his wishes.
In the situation you describe, absolutely yes, Nursing Home care was the right call for your Dad.
There is no way that his partner, with her own health problems, would have been able to manage your Dad’s care needs.
Sorry for your loss.
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Hi Susie,
I am in floods of tears reading your post. It is truly awful what has happened. You did everything right, both on a practical level with the nursing home so he got the care he needed and respecting his space when he wanted it. You can only make decisions based on the information you have.
My mam died in November. She didn’t know she had cancer and it had spread. She didn’t ring the GP every time she was in pain and would go back to bed. I think it’s a generational thing of being independent and not wanting a fuss. My parents moved to a high dependency place where they had 24 hour care if needed but lived in their own flat within the building. Mam didn’t want to move there and I told her she didn’t have to, even during the actual move. I am so full of regrets and guilt, blaming myself for not knowing she was ill even though she had lost such a lot of weight and had stopped eating. I would do anything to revisit that time and do everything perfectly but I can’t. I cannot move on through grief because I am always questioning what could have been done differently. It will haunt me forever. I am engulfed by the sadness and panic about everything I didn’t do.
Is your dad’s partner getting the care she needs? Possibly in a nursing home or similar?
I am part of a lovely friendship group and find posting helps me get through the bad times. Exploring whatever is troubling me is helpful in getting a non judgmental view back. You are very welcome to join us.
Lots of love, Christine xxx
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Thank you so much for your lovely reply, it has helped a lot. The logical part of my brain keeps telling me I really did everything I could with the knowledge I had and with the time and resources I had available - I think it must be the slightly crazy things your brain does when grieving that’s at play here! So I’ll keep reminding myself of that. Thank you again.
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Hi Christine, thank you for taking the time to write a lovely reply, it has helped me a lot. Knowing others are going through the same or similar emotions and phases of grief helps to keep perspective. I’m so sorry to hear about your mam, and I think you’re right about that generation ‘not wanting a fuss’. When I read your message, I instantly thought there is no way at all you should feel any regret or guilt, it’s obvious just from the way you speak about your mam that you were a wonderful daughter and she will have known that you wanted to do right by her. I’m not sure why I can see this in your situation and can’t then apply it to my own experience! I can only assume the guilt and regret is a part of the process, and I suppose it’s felt on a deep level by people simply because we care so much.
I too keep thinking about how much weight my poor dad had lost without me realising (I only saw this when the paramedics got him out of his bed and I put his dressing gown around him), I was truly shocked. He had always been well covered in shirts and trousers whenever I had visited. I also wish I could turn back the clock and I would have got him the help he desperately needed sooner, but I also wonder if he would have accepted it - sadly, I think it had to get to a point with my dad where he knew he simply couldn’t cope any longer before he allowed himself to be taken out of his home.
Hopefully a time will come (and I know it will) where we accept that the events happened the way they did, realise we have nothing to forgive ourselves for, and are able to regain some normality, but it’s just easier said than done.
Dad’s partner has her own sons who are doing what they can to look after her - carers are going in twice a day, and after my dad’s funeral, I will be popping in when I can to see her too - at the moment, I find it too hard to go into dad’s house as it’s full of his things and memories, and his partner just asks me where he is over and over again.
What is the friendship group you are a part of - is it on this website? Thank you so much for your love and support, hope you are having a good day today, Susie.
Hi Susie,
Thank you very much for your kind and loving reply. It has been 6 months now (28 weeks tomorrow) for my mam and I am as devastated now as when it first happened. Grief is such an intricate and complex creature. Sometimes I am able to ‘function’ in actually being productive in my day and others I cannot stop crying and begging for mam to come back. She is with me when I am in my garden but then it hits me that she’s not there and never will be again. I long to never wake up and join her but I can’t leave my cat behind. That is how desperately unhappy I feel to not have her in this world. I can’t see it ever getting any easier. I ache for this to not have happened.
It is very hard to be objective and kind to yourself because we are in such pain. It is easier to try to find answers and I always torment myself by wanting to perfect the past and I know I can’t do that. I just want to be with her and tell her I’m sorry for anything that I said or did to upset her. Guilt and regretting everything and anything is part of the process. Everyone is tormented by it in our group (Creating a shrine for my mam) but we keep posting and it helps. We understand it because we feel it. We know it will not last and runs its course until we are able to pick ourselves up again. We post pics of what we’ve been doing and it is true friendship. I am agoraphobic and have panic attacks so don’t leave the house hardly. I have therapy once a week and it is the only human contact I have since my dad has disowned me for being so grief stricken and my sister ignored me (don’t know why). So when I lost my mam I lost being part of the family who I thought loved me. It’s a steep learning curve, accepting that everyone processes their grief differently. My dad is very angry towards me and I will not tolerate it. It’s good to explore and get reactions to things that I am having to deal with. It really does help to have people in my corner.
I’m pleased your dad’s partner is getting the help she needs, though twice a day might not be enough. My parents moved into an independent living building where they have their own flat but care is on hand 24 7 with assessments as to what is needed. Maybe you could put that forward so she is safe and not able to go wandering about and getting lost. I’m terrified of losing my independence. Mam was in and out of hospital with angina and other things but she was told she would get better. We didn’t know she has gall bladder cancer and it had spread. She died within a week of being in hospital and I know that I am luckier than most to have been able to be with her for the last few days. But whatever our situations it is the most devastating thing to happen. It takes my breath away when I panic and realise it is true. I kept thinking she was still on holiday because I hadn’t talked to her in a while.
Sorry, when it starts I can’t stop! I just can’t imagine a lifetime without my mam. She is the most precious thing to me and I never told her. Knowing that I don’t need to say it and that mam knew how much I loved her doesn’t take away that longing to have told her. It’s like I’ve reverted back to being a child again. Since she passed in November I have been unable to celebrate Christmas, New Year, her 80th birthday, Mothers Day, Easter, my birthday, the Jubilee. Everything is a reminder that she is absent. I can’t bear to see her smiling at me on the tribute site I did for her. It’s just so upsetting but I do force myself just incase she’s watching over me. I long to have her visit me. I want to still visit her at the chapel of rest.
I’m so sorry Susie. I’m just so upset. I’m always on the brink of tears and can’t contain it. And as you can see I’m very open with my grief. I can’t hide from it. To get it out, to post it here, helps me move forward.
It will be lovely to see you join our friendship group. I’m sure it will help you even if you just read the posts and know that you are not alone in your sadness. I craeted the shrine for my mam in the sitting room so she is with me every evening when I’m watching tv. It’s lovely with the fairy lights and candles. If you see it from the beginning I have lots of pics posted to give people inspiration to help them do something similar.
Please know that you did do everything you could (why would you not?) with the knowledge you had and juggling life at the same time. Hindsight is a wonderful thing. I want to rewind like in a film. I want to go back and be a child again so I have my mam forever stretching out before me. My therapist said that to let go of grief, to not cling to it, will bring you closer to your loved one, for them to be with you again as they were in life. But I just can’t let her go.
When it hits me I’m drowning and can’t stop. So I’ll let you go and see you in ‘Creating a shrine for my mam’.
Lots of love xxx