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I was a caregiver to my advanced dementia and heart failure father. He had been bed-bound for two years before he got pneumonia and was hospitalized (bad idea at his stage). Fortunately he came back home to die (although no doctor told me that). He was eating poorly, I alarmed the GPs but didn't reacted. No house call. My half sister from far far away was urging me to bring a cardiologist home over the phone before the weekend- in other case dad dies. I didn't believe her and decided to wait till my dad's original GP comes back next week (I trusted her). And then my dad died on Friday. I don't feel responsible for his death but I am definitely the one who is responsible for not organizing home hospice for him. He was dying without morphine. He wasn't showing any signs of pain or laboured breathing but I read this might be the case in this group of patients. They suffer but it doesn't show. I made a host of bad medical decisions and now I feel I failed him. I feel horrible.

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Sometimes we get so tired and so burned out that it's difficult to realize that something else needs to be done. That's okay! If he showed no signs of pain or labored breathing, how would you know he was in trouble? You wouldn't. So stop berating yourself and realize that you did the best you could for that person at that time. If his life hadn't ended, he'd still be close to the end because it was his time to go. He was lucky to have such a caring daughter, so take comfort in that.

My sincere condolences on your loss.
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Reply to Fawnby
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My dad died of congestive heart failure, after many years of dealing with it. It’s a slow marching, relentless struggle. When my dad had his umpteenth hospitalization to pull off fluid, followed by a failed rehab as he didn’t have any more “just try” left in him, it was his long time cardiologist who said what proved to be the smartest thing to us. We called for advice as we were all frustrated. He said “you know, if this was my dad, I’d just bring him home and let him die in peace” We discussed this with dad and he readily agreed. He was gone weeks later. I relate that to say, often doctors run out of answers and can offer no more help. Many doctors will never say or admit that, as their training is to fix things or at least make them better. I’d bet no doctor would have made a difference with your dad. It was simply the time for him to leave. Sad as that is, he’s at peace now. A loving dad would never want you here beating yourself up over his final time, he’d want you recalling memories of happier days. You didn’t fail dad, his old body and mind did, as all of ours will one day. I wish you healing and peace
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Reply to Daughterof1930
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AlicjaKarolina1 Sep 19, 2024
Thank You. My biggest concern is that dad didn't get morphine or other comfort measures. I am afraid he was in pain or breathless. :(
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You did the best for your Dad. Having Doctors there wouldn't change anything. GPs don't make house calls. If anything, it was the Doctor's fault for not suggesting hospice to you earlier, so you could arrange it.

Don't punish yourself, you aren't a Doctor, or experienced with impending death. I was not when my beloved husband died at home, surrounded by loved ones. He struggled those last 45 minutes, and the hospice nurse took me aside, and told me to tell him to let go, so I almost took a swing at her! She said she had been doing this work 20 years, and it was clear he was hanging on for ME, nobody else. She said to stop his suffering and give him permission to let go, to assure him I loved him and I will be OK. To tell him it was breaking my heart to watch him suffer. I never thought I could do it, but I gathered the strength....asked everyone to step back, and whispered it to him as tears rolled. I stepped away to get fresh air, and within 15 seconds, he was gone. The room (with 14 foot vaulted ceilings) glowed as his spirit left his body. Everyone gasped in awe.

I look back 23 years later and still glad I did it. His suffering was unbearable to us both. It was the ultimate show of love by the one he loved the most, his Soul Mate.

You didn't fail your Dad. You were there for him at the end of his long life. Everyone knows it, including God. You showed love, honor and courage. Don't let anyone tell you otherwise. It's the hardest thing in life people must do.
Your Dad would be proud.

Hold your head high forever. You are now a woman of true honor. You earned that right with no help from anyone.
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AlicjaKarolina1 Sep 19, 2024
Thank You Dawn88. Sadly I see myself as a coward that should have been more active.
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Oh my goodness... I have the same feelings everyday. I cry, I think what could I have done! Then I pray. God help me with these feelings comfort me as I feel I have failed. Then I wait and soon I get the answer that I did all I KNEW what to do.
I also have learned to ask questions and find sites like this one so I can help others and to what I have experienced and share my info with others.
Know that as I finish this little note I have said a prayer for comfort for you!
hugs
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AlicjaKarolina1 Sep 19, 2024
Thank You for the prayer! And for your answer.
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"They suffer but don't show it" you say.
I as a retired RN do not find that to be true at all or in any way.
In fact, suffering shows, as does a struggle. And more often than not what looks like an awful gasping for air, a terrible struggle is not registered by the patient mentally, or is not remembered at all. This is likely because there is little oxygen to the brain and for all intent and purpose that patient is comatose.

We often, in grief, choose not to walk into the grief. Instead we delay entering into this finality of loss by blaming. Usually people blame doctors, nurses, hospitals, rehabs, Hospices. But sometimes, none of those being in any way responsible, they blame themselves.

This was a long life. This life was richly and wholly supported by a devoted loving family. This is about as lucky as it gets. Pneumonia, historically and for centuries has been known as the old person's friend, because it ushers out so many. And because their lives are down to suffering only.

I am sorry there was no hospice support because they would have been very reassuring. Sounds like a mess of stuff falling though the cracks. And Hospice could have administered drugs that would have cut down the APPEARANCE of air hunger. But I would say that all in all, you are face now with grieving. And remember to consider the length of life, the love, the luck--the WHOLE of this life. Be easy on yourself. This wasn't caused by you and couldn't have been fixed by you. Save your strength for the grief of loss. I am so sorry for your loss, but I think your dad was lucky in you all.
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AlicjaKarolina1 Sep 19, 2024
Thank You so much AlvaDeer. When dying Dad seemed calm (or rather unconscious), was not gasping for air, was not agitated. But what frightens me most is that fluid might have started gathering in his lungs and he had pulmonary edema and felt breathless. Do you think it would show even though he had advanced dementia?
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I can assure you that if your father would have been in any pain that you would have known it, along with any labored breathing.
The fact that he showed no signs of either tells me that his death was peaceful and quick and for that you should be grateful.
My late husband was under hospice care and he suffered in great pain and with labored breathing even being on oxygen right up until the end, and yes it showed.
And yes it was horrific to witness.
So I am glad that you were spared that horrific end to your fathers life, and that he instead died in peace. And he would not want you second guessing anything you did or didn't do, as he knew that you did the very best you could and that he was able to die at home which I'm sure is what he wanted.
Please seek out some grief counseling now. Grief Share is a free support group that meets in every city throughout the year, so just Google to see where one is by you.
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AlicjaKarolina1 Sep 19, 2024
Thank You funkygrandma. I'm sending you my hugs.
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Doctors used to call Pneumonia the 'Old man's friend' or to update, 'The friend of the aged'. It was seen as GOOD way to go. Just slip away.

Morphine is certainly not NEEDED to die in my humble opinion.

Many people die quite suddenly, no time or need for medication. Many others slip away slowly but without apparent distress.

I work in heathcare & have witnessed many deaths. There have been some deaths I remember where medication seemed a blessing to ease their suffering (eg air hunger with severe lung disease, liver cancer pain).

The 'death rattle' breathing sound can upset some people, just as other groans & bodily noises can. However, this does not mean they are painfull to the person.

Many simply have longer & longer pauses between their breathes, then stop breathing. Often in the small hours of the night or just before dawn, when the world seems the quietiest. It can be very peaceful.

I would try to speak through your experience with an experienced Hospice Nurse. Not everyone needs Hospice services. If so, if things move quickly at the end stage, that in itself can be a blessing.

A long life & a quick end. Sounds like what is called A Good Death to me.
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AlicjaKarolina1 Sep 19, 2024
My dad didn't get ausculated by a doctor and I am afraid fluid started gathering in his lungs. Do you think that even if it had been true it might not have bothered him? Is morphine given in such cases when there is fluid in the lungs but patient seems comfortable? Does breathlessness show even in case of patients with advanced dementia?
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