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I feel so guilty

Jadeyb123
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Today my dad went into hospice care and the guilt I feel is absolutely crushing me. 

Back story is he got diagnosed 2018 with bowel cancer. After having a major operation and opting for a colostomy bag for life we thought that was it as they couldn’t find any more traces of cancer.. However in 2019 he suffered what we thought was a stroke but actually turned out to be brain metastasis. Since then he has had 2 major brain surgery’s, brain radiotherapy, radiotherapy on his spine, and every chemo going. In that time it has spread to his lungs, liver, spine and very recently his knee. There has been many times in the past year and a half especially that I have thought he would not make it much longer and every time he has carried on fighting and got better and life has carried on inbetween all the constant appointments. 

however lately I could tell the treatments were not really working anymore, and I was right. Although the cancer has been kept at bay in his body, the brain metasis have developed significantly and in the space of 2 weeks he has rapidly deteriorated to the point where he now can barely stand or walk. Doesn’t know who we are and can hardly speak. Yet he is adamant he wants to still do things like walk to the toilet etc which has led to a fall and him wearing himself out. For the last week between me and my mom we have been with him 24/7 as we were petrified he would fall over again and really hurt himself. There have been carers and nurses coming out and they have been amazing but in the middle of the night while I’m trying to hold him up in one hand and phone the nurses on the other to get them to come out and help him it’s just been impossible. He is deteriorating so fast that we just aren’t able to offer him the care and safety he really needs and so today he went into a hospice. He was very stressed out by this and extremely agitated it took them hours to calm him when he went in, even though he went in quite happily (he kept thinking his bedroom at home was already a hospital).

Nurses, friends etc all keep telling me it’s the best decision and he will get the care he needs and of course I will still be visiting him every day but I can’t help feeling so guilty and like I’ve let him down. I just want him to be comfortable and not in pain. Seeing him suddenly not know how to do simple things, clutching at things that aren’t there, not understanding simple things or even who I am is just heartbreaking. I don’t even know why I am writing all this I just feel so guilty. Have I made the right decision :( 

  • I'm so sorry to read your post Jadeyb123.

    I know this was an incredibly difficult decision to make but from what I've read, it definitely seems like you have made the right choice. Although it can be painful, a person's greatest strength can be recognising when something is not possible anymore, and that is exactly what you did. You have put your dad first and he will now be able to get the  constant care he needs and you and your mom can visit without having to worry about this and concentrate on spending quality time together.

    Many of our members know how upsetting making this decision can be though, so you are most certainly not alone, and I'm sure some of them will stop by soon to offer you their support and advice.

    We're thinking of you Jadey and sending all our strength and support to you and your family at this very challenging time.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Firstly, my most sincerest of best wishes to you & yours at this most precious of times.

    My wife, a now 31 year old lady, was diagnosed with a brain tumour in December of last year, biopsy was done and they classified it as a grade 2 astrocytoma, tablet chemo was started and she tolerated this well with just a little fatigue.. this was good and encouraging, however life was about to go completely to rats..

    At the end of the 23 days off of the chemo, she caught a UTI, looking back this had been a thing for a good while, maybe 7-10 days.. this really kicked her immune system and thus she was rushed to hospital and pumped full of antibiotics. They worked and she improved, however during her admittance to hospital they did a suite of tests to fully gauge her situation.. this is where the wheels came off.

    Upon doing her MRI, they noted that her tumour had grown and spread.. a lot.. this meant that once she’d been released once the UTI was fixed, our next date was back with the oncologist.. but this time her news was not so positive.. they stopped her treatment and enlisted a local hospice as the tumour had gone like wild fire.. with a negligible chance of even remote improvement. 

    so why am i saying this, well recently she’s been declining. And the hospice wanted her to go in, she said and we as her family said now isn’t the time.. but like you’ve had to make a call on, someday, possibly sooner than I care to admit, I’ll be doing the same. 

    it’s so hurtful when you think of what is right vs what you want. I am glad I found this page, the chatting shall really help.

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