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My dad died one year ago, three years after being diagnosed with Alzheimer's. My mother and I were the main caretakers. After he entered hospice, I stayed with them until he died.
I can't stop reliving his last 24 hours. He was thrashing around a lot, pulling at his catheter and kicking off his blankets. I was administering his drugs and in constant contact with hospice. They assured me that he was in no pain, but how do they know that?? I can't shake this feeling that I should have done more, should have insisted on something stronger (although I did a few times).
Hospice was wonderful, and he eventually passed very peacefully, so I feel like everyone did their job except me.

When you love, you will always question the choices you made "under pressure". Did I make the right choice? Should I have advocated stronger or differently? We all feel that way at some point when caring for our loved ones. I felt that way once when my father was resuscitated (would he have been better off if I had let him go) and once with my mother's death (should I have realized she was in decline and got her to a hospital sooner). In the end, I did what I thought at the moment was right for both of them. I gave them both the best effort I could with a loving heart.

It comes down to control. You didn't have any choices in the illnesses old age brought to your parent and therefore no control. The choices in their care were limited by many circumstances out of your control too. You did your best. No one can do more than their best. Time and illness were going to take your Dad regardless of what choices you made. You did your best to give him the love and care he deserved. Well done. Now go on with your life to honor the man who endeared that devotion.
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Reply to TNtechie
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Anitanita17 Sep 25, 2021
TNtechie, I just wanted to say how beautiful your response was. My mom passed tonight, and you made my heart feel better. Thank you.
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I was once told that when you love someone you feel like you haven't done enough; when you don't love someone you feel you have done too much.
You loved your dad and wanted the best for him, to take away his pain... But our loved ones' lives are not in our hands, we are just humans and doing our best.
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Reply to Anche71
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You can't play God, nor can you expect yourself to provide a service for your father that nobody could. The death process looks ugly and sounds ugly sometimes. Some people go quietly in their sleep while others fight it off, every step of the way, kicking and screaming. Everyone is different. You had hospice and they've seen every scenario imaginable. If they told you your dad wasn't in pain during his final transition, why don't you believe them? And, you say he wound up passing peacefully, so THAT is what you need to focus on, not the time that he was struggling.

The human mind tends to go to the ugly, painful memories to dwell on. I was doing the same thing for a while after my father died; remembering his labored breathing at the end. So I'd force my thoughts OFF of that memory and onto another, happier memory of him laughing or enjoying a meal I'd made for him. Of him sitting at my kitchen table at Christmas with his usual toothpick in his mouth; things like that. I had to make a conscious effort to force my thoughts OFF of the negative and ONTO the positive, you know?

You did nothing wrong and I did nothing wrong that sped up our father's passing, nor did we do something to worsen their death experience. In fact, we were there IN SPITE of our own feelings of fear and despair. We fought THROUGH those feelings and stayed at their side throughout the whole ordeal. That is what we should celebrate: that we persevered through it all and we were there for our fathers till the end.

Wishing you the best of luck healing and passing through the grief and sadness you feel in losing your dad. Healing doesn't mean we forget; just that we're able to remember our dad's with laughter and happiness instead of raw and intense grief.
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Reply to lealonnie1
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I also went through losing my dad while on home hospice last year. It was beyond difficult to watch his last days, I still feel a mix of honored to be there for him along with feelings hard to describe about watching the end coming. No one can say what the last days or hours may look like, or even if what’s appearing to be the person being uncomfortable is actually that. Death is a solo journey, one we won’t know all about until we go there ourselves. Your dad was blessed to have your love and care, that’s all anyone can ever expect. I hope you’ll get peace over this and let memories of happier times sustain you
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Reply to Daughterof1930
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It isn't a party getting born, and neither is dying. It's all part of the process.

Cut yourself a break. You did fine.
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Reply to MJ1929
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If your dad could put his arms around you now, he’d say ‘thank you, you were there for me and I’m so glad for that’. So many people have a guilt issue after a loved one passes, it’s a natural feeling but of all those who say this to me, I know they had all gone over and above with the care and love for their departing relative. It’s because you have huge empathy and will therefore be more critical of yourself. The other day I met a lady who abandoned her dad’s care solely to her brother. Her dad has now passed and she doesn’t have an ounce of guilt. The good souls like yourself that did their best only suffer this guilt. He’s a peace now and wouldn’t want you beating yourself up. X
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Reply to HoneyBee2021
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You've received some very helpful replies here. I would add that hospice would definitely have markers to indicate pain and anxiety if someone can't verbalize it (pupils dilated, rapid shallow breathing, blood pressure, etc) so if they assure you that Dad wasn't in pain, I'd believe it. The thrashing around may have been the body's process of shutting down and he may have been oblivious to it. So very sorry for your loss. Sounds like you did him proud.
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Reply to BernerMom
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We all know the dream - dying quietly in your sleep in your own warm bed. No pain. No distress. No fear.

I remember my own grandmother in agony, crying out for us to kill her. Back then, we weren’t able to help loved ones along. It’s different now, but that doesn’t make it easier emotionally. Because it hurts us to the core to see our loved ones in so much distress.

I think you need to focus on what you DID do. You were there. And not just that day, but all the days before it. You held his hand. You did give him comfort. Have you tried having an imaginary conversation with your father? close your eyes and picture you sitting with your dad. Tell him everything you’re feeling. All your regrets. And then, just quietly listen. What would your dad say? Would he agree that you didn’t do enough?

Time doesn’t heal all wounds. If after all this, you still feel unresolved, please try talking to someone. There are therapists that specialize in loss.

I think it’s time to give yourself a break, and forgive yourself.
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Reply to Lizbitty
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Unless you are God, what more could you have done. You loved him and you were there for him - thank yourself for caring and loving him. Do not feel guilty. You are a saint.
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Reply to Riley2166
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You have received many helpful answers here and I just want to add one about the pain that is so difficult to watch and understand.

The body, mind and spirit can be quite distinct. Some 20 years ago a fire truck struck my car and I was in ICU, CCU for several weeks then another 3 months of hospitalization then 3 months outpatient rehab. During the first few weeks I was clinically dead twice and during those weeks I learned later that I was thrashing, pulling out tubes, falling from the bed so they had to put me in restraints, bed rails, motion alerts etc.

Well I remember well the moment before my car was hit and then what went on from a month after in the hospitals but my mind remembers absolutely nothing else. I have NO remembrance of any of the family reported pain that they observed with horror.

Fast forward to almost two years ago when my wife died of pancreatic cancer. She was in hospice and I watched daily as she made the transition from this world to the other side. The first few days I was concerned that the hospice staff were not doing enough to keep her alive, that they were not giving her her medicines to help her process her meals but after 2 days, I realized that she was not in hospice to get treatments, she was there to process her final days. I watched as her body processed the dying process and watched the peaceful moments when I realized that her mind was processing her life, a life filled with love and many happy moments as she made the transition.

Whenever she was necessarily moved by the hospice staff I saw the reaction of the body to this and how it shifted back to peaceful moments when left alone (though gentle touches did not disturb the peace) and because I had actually been blessed with my own event, I understood when the hospice assured me that she was not mentally in the pain we seemed to otherwise observe.

So the loving care you gave is what the dying mind processes as they make the transition. They also go through a spiritual transition but that is another topic not related here.
















Each of us deals with grief differently. I was actually fortunate in being able to observe the dying process and getting to understand it. That helped me to reflect on the quote: 'Weep not that I am gone; rejoice that I was there'

May peace be on you also.
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