I don’t know why I am posting, maybe to get advice from people who understand but my dear father lost his battle 2 weeks ago due to sepsis and pneumonia. I took him A&E 4 days before and they completed tests and discharged him saying he just had a cough infection and provided him with antibiotics. My heart told me that there was more but I feel I didn’t do enough and I am swollen with guilt and what I could have done more.
I failed to notice the signs of pneumonia now I look back and I don’t know how A&E dismissed this too. He ticked all the symptoms.
Dad must have been in so much pain and I didn’t see it or help. I really miss dad as well. These 2 weeks have been really difficult and I cannot see it getting better. I failed dad and I wish I pushed the hospital more. The hospital for sure neglected dad, they are understaffed and overwhelmed and they did nothing to help dad.
I know I need to move on but the guilt in me won’t let me. I keep blaming myself.
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Khalissi
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Dear Khalissi, I was so sorry to hear what happened and agree that the hospital does certainly appear to have let your Dad down, but NOT you. You were listening to the 'experts'. If your Dad had been correctly diagnosed and treated he would probably been admitted and the outcome might still have been the same. As it was he was at home with you and was in a loving environment where I am sure that he would have rather been. You have given up so much time and energy to care for him and I am sure that he really appreciated that so please let the guilt go. I wrote a poem when my first husband died back in the 90s called 'Did I do it right?' because I thought that I had failed him, but I realised that no one gives you a book on how to 'do it right' so there isn't a right way apart from love. Big hug. AliBee
Dear Khalissi. I feel with you. The others have already said everything important. You might need to have those thoughts, and sharing them with us might help you acknowledge what you are feeling. Anger (with the doctors - and with yourself) is part of grieving and probably one that you can't skip however much you want to. Hopefully you will see that you don't deserve any blame and you will need to forgive yourself 💕 and let go of the guilt.
I am sorry for your loss and your very painful grief. The same thing happened with my father in law (who did not have PSP but was in his late 80s with a progressive lung disease) . Discharged from A&E with amoxicillin and mild suspicion of pneumonia, supposedly not serious, he was brought home to bed by the ambulance and died within a couple of hours. My mother in law and my brother in law felt very guilty (especially because they felt they had missed a chance to say a meaningful goodbye) and initiated an inquiry.
The fact is that my FIL and your father were already in terribly poor health, progressively disabled by their conditions, and life was going to get much more difficult for them very soon. You did not fail your father. His pneumonia was part of the natural course of this disease. He is no longer in pain, and you don’t need to worry about him. Your father has been released.
Send love and gratitude for your father’s life his way; remember the good times; realize that he, your mother, and you have all been set free; and move forward with another worthy mission in life.
Please don’t feel guilty, you did everything you could for your dad. I unfortunately went through the same back in April and it is all part of the process. I know I did everything I could for my dad, I listened to professionals just like yourself and there is nothing more I could do… However after a while I did realise that my dad was given a blessing of passing away to get away from this awful illness and that he was going to keep suffering terribly. I now take my guilt as a relief for my dad and know that he is no longer suffering anymore.
You did your best and I’m sure your dad is very proud of you for all you did. He is at peace now from this awful illness.
You did not fail your father. PSP took him from you. There is no stopping its merciless “progress.” Believe that you did every thing you could. PSP is so relentles annd cruel, elongating life is not always the best, most compassionate goal. I know you miss him terribly, as I do my husband, but he is free. PSP is prison.
You did your best, and I'm certain he appreciated that. It's such a hard disease and we are navigating uncertain waters to the extent that even healthcare professionals aren't certain what to do in many cases. Give yourself grace. I'm sorry the doctors and healthcare system weren't effective - that's not on you though. This disease is truly horrible and I genuinely hope you can find peace. Rest in peace to your father, you loved him well x
Every time I read the posts here I am in tears. I am so sorry for your loss. My husband has PSP and has deteriorated since diagnosis Oct last year. Guilt is so much part of my burden now although I know and family and freinds have assured me I am doing well and a lot for him. Khalissi, as others have said it too, your dad's suffering has been shortened. You did all you could and the antibiotics might not have helped. Be happy that it is over for him. That is what I want for my husband instead of prolonging it with medication. PSP is evil. I know that my husband might go the same way.
We have done a Do Not Attempt Resuscitaion (DNAR) and also a Advance Will to refuse treatment.
Be comforted that you did not fail your dad and be glad he is released from his suffering.
Oh bless you Khalissa, I can feel your hurt as I'm sure all those who've replied to you can. They've written such words of wisdom: it was PSP that took your dear Father; you're going through a stage of grief; this was his destiny; YOU didn't fail him, etc.,Please keep reading these replies until you start to believe that. Your Father is suffering no more. That is so important. He wouldn't want you to be feeling guilty. He knows, as we all do, that you loved and cared for him and did as much as you could.
We all empathise with you Khalissa having gone through similar journeys of pain, anger and most of all guilt. I ended up with the Health Service Ombudsman looking at my husband’s poor care. No further action taken after investigation but I hope that those involved might consider changing their practice for future patients.
That’s what we have to do. Tell people about PSP, donate to the association when we can, make a noise to improve care for patients in the future.
And remember and share memories of your father with your family and friends
Please do not blame yourself. The hospital, yes but not yourself.
Most of us experience guilt after a loved one passed away; even if we did "everything right" , there is always something more we think we could have done. I experienced this with my beloved husband/soulmate who died in home hospice with myself as care taker.
I had to learn how to be more gentle to myself. You have to do this. Be as kind to yourself as you can. Let the thought and guilt come and go. It is often part of the grieving process.
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