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Coming to terms with the physical pain a loved one was in at the end


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How does one come to terms with or deal with the fact that their loved one suffered the physical pain of or leading up to dying? As far as I am aware, Crystal had a painful last few days due to the fast spread of the cancer. She was heavily sedated during this time which helped control it I think.

Half the problem is, I'll never truly know how much pain she was or wasn't in because I wasn't there.

But I find it immensely difficult to find any way to be at peace with what she may have gone through. Someone you love more than anything, someone you want to protect, having to go through that. 

 

 

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Finch, I don't know if one can truly accept the pain that our loved ones experienced at their departure ..

Pain is something we all experience in one form or another...

How can one accept that? I don't think we can...perhaps we just have to realize there are things we are not going to get answers for.

I actually don't know if we really get any answers on things pondered...seems to lead to more pondering...for me anyhow.

Not sure this was any help, Marie

 

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I've had to just accept it as something I could not change and not focus on that, choosing to focus on his life and what we had together instead.

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My bf had a chronic disease and endured and fought so much. He deserved so much better, and I have no asnwers to why he didn't, nor he was given a chance to survive a life changing surgery. There will never be answers. We must also live with that.

 

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Finch,

That is one of the things I struggle with daily. That vision of my daughter as she lay screaming, convulsing, and gasping for breath while all I could do was stand by and watch helplessly. It is forever burned in my memory. Thankfully, my husband was comatose when he took his last breath.

I have yet to come to terms with any of it.

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I can relate. My hubby was gasping for breath as i was holding one arm and the nurse another to keep the oxygen mask on. He was then sedated and intubated. I will always remember the breathing,the fear in his eyes and i was holding him down telling himto keep the mask on. Why in hells name wasnt i saying i love you. It was the last chance i had before he died when he was aware. I will always have this deep, deep regret.

 

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Autumn, 

In my mind you were saying "I love you."  You were showing him how much you love him. You were fighting for his life. He knew that then and knows that now.   We all handled those final moments with all the love we had. When my wife died I was holding our daughter and not my wife's hand. I regretted that but then I came to realize my daughter needed me more than my wife did at that time. I was telling Deedo that I loved her by comforting our daughter. 

We need to understand that actions do speak far louder than words; especially under stress. 

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You all know he reached for me to show he had to give up and I turned my back in anger on him for giving up.  I thought it would make him not give up..  When the time comes you don't know what you will do.  My dream was to hold him.  My nightmare was to turn my back on him.  When they are gone they are gone and we can only hope they understood, I hope he understood that I was not going to let him give up.................then, it was not my choice, nor his.  And it is the most horrible thought to have to think of so I try not to do it..  You see, if I think about it all the time I will start substituting the word grief with guilt again.  We try not to think about it.  We try not to think about it, we try not to think about it because it will drive us crazy.  He is gone, he is not with me, he is not hurting and I failed him.  No.............I don't want to think about it. 

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My chest tightens so much when I think about my husband suffering and planning his death.  It's one of those if only situations.  So sorry my love, I wish you could have confided in me. ?

Some of the time my mental pain is torture but the physical pain is frightening.

I do hope this part of grief will subside soon.

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10 hours ago, Marg M said:

You all know he reached for me to show he had to give up and I turned my back in anger on him for giving up.  I thought it would make him not give up..  

Marg - 

My wish for you is that someday you are able to see that turning your back on him was an act of love and that Billy understood that then.  You did not want to see him go.  You were doing everything in your power to keep him with you.  Give yourself a hug and try to see your actions for what they truly were.

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3 hours ago, Brad said:

You were doing everything in your power to keep him with you.

Brad, it is just 16 months today.  I hate dates.  I had my head laying on his bed but I was as far away from him as life is from death and when I think of that loving man, the one who loved for me to hold him, and I did let him down, the very last seconds of his life.  I cannot understand anyone wanting to know how someone they loved died.  I don't know if the aneurysm burst, his heart gave out, or what happened, all I know is he is gone.  Just like all the ones we loved.  They are gone.  They are not a dream we had, they are people who lay beside us on the bed.  

Every morning I get up the first thing that enters my mind is, where is he, and all of a sudden I know "you fool, he is not here."  This morning I even thought of my mama, and I am an old woman thinking about my mama.  Now, I have to quit crying and help prepare a day for my granddaughter to wake up to with her only grandparent left and her Mama moved to Kansas.  I have to live.  And Billy, I am doing exactly what you would be doing.  The one left must stay.

Thanks Brad. I don't know what Billy's thoughts were, but he forgave me everything, so I know he forgave me.  My daughter moved out of state alone, she is not well physically and mentally, and I don't know why, but it is hitting me hard today.  She is so alone, but had to get away from a disastrous nightmare here at home.  We all have our story, don't we?  My daughter will come back home eventually.  

And not to go into too much more, my granddaughter is happy.  She has a counselor that helps her.  She goes to school happy, she comes home happy, and that is what I am here for.  She also was Billy's life.  

 

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Marg:  When I read your post, I thought of the other day I was in the grocery store and all of a sudden I had this strong desire to know exactly what happened physically to cause John's death.  I know he had throat cancer, but they had been giving us thumbs up reports on his cancer and tests and then in April he found another node and he was dead by June and none of the doctors ever sat down with us and explained what went wrong, why none of the tests showed anything up until then, PET scans, CT scans.  They had said that it was 90% curable.  I know I can pretty much figure it out (maybe).  Anyway, it was such a shock to us both, two months wasn't enough time to deal with it, so I find myself now wanting answers.  I will probably ask the doctor to explain it to me.  I know it won't bring him back, but I have an intense need to know what took him away.  I'm hoping it will bring me a bit of comfort.  I know this sounds crazy probably...just explaining sometimes there is a need to know in black and white what happened.  Hugs to you....Cookie

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Cookie and Marg, your descriptions of needing to know vs. not needing to know are good examples of the fact that grief is unique to each of us, and what we need to bring us comfort is different for every one of us. So Cookie, your "intense need to know what took him away" does not sound crazy at all. As you say, "sometimes there is a need to know in black and white what happened" and there is nothing wrong with that.  

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16 hours ago, Marg M said:

You all know he reached for me to show he had to give up and I turned my back in anger on him for giving up.  I thought it would make him not give up..  When the time comes you don't know what you will do.  My dream was to hold him.  My nightmare was to turn my back on him.  When they are gone they are gone and we can only hope they understood, I hope he understood that I was not going to let him give up.................then, it was not my choice, nor his.  And it is the most horrible thought to have to think of so I try not to do it..  You see, if I think about it all the time I will start substituting the word grief with guilt again.  We try not to think about it.  We try not to think about it, we try not to think about it because it will drive us crazy.  He is gone, he is not with me, he is not hurting and I failed him.  No.............I don't want to think about it. 

Marg:  It's clear how much you loved him...I have guilt because I woke up at 3:00 AM and looked at John and he wasn't breathing well (he had been having trouble with a CPAP mask) and went back to sleep; then I woke up at 4:00 and realized he was really not breathing well, tore the mask off and he was dead 15 minutes later after my daughter and I tried CPR and everything to bring him back.  So, I have a lot of guilt about that.  I had this idea that when the time came, we would know and sit by the bedside and love him out of this world instead of beating on him.  I am having a hard time feeling okay about it....hugs, Cookie

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1 hour ago, MartyT said:

Cookie and Marg, your descriptions of needing to know vs. not needing to know are good examples of the fact that grief is unique to each of us, and what we need to bring us comfort is different for every one of us. So Cookie, your "intense need to know what took him away" does not sound crazy at all. As you say, "sometimes there is a need to know in black and white what happened" and there is nothing wrong with that.  

Thanks MartyT:  I am a little worried about how the doctor will react when I ask for the details, but I have a right to know don't I?......

 

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My Billy was riding the elliptical for 30 minutes before August 31st.  Have you ever tried to ride an elliptical?  One time I worked up to 30 minutes but it took me listening to a whole album of Journey and knowing each song was 4 or 5 more minutes and saying "I can do this." (and also working up to 30 minutes).  Now, I could not ride one five minutes.  August 31st we found out about the brain aneurysm while having scans of his back, which we had gone to a spine specialist for that.  They told us about the brain aneurysm.  Also said they thought it was old.  Nothing other than back trouble to clue us in.  He did have frozen shoulders two years ago and went through therapy, and he broke through that in record time.  Always his herniated disks.  We knew about them in his late 30's but the surgery back then was so radical and he did not want to be in a wheelchair.  Always his back.  In his 30's we would be walking our 3 miles and one leg would give out from the nerves pinching on the disks.  

August 31st, neurosurgeon.  The news was actually good.  They could take care of it.  Best neurosurgeon in Little Rock, but it happened to be at the state hospital.  I retired from state hospital in Louisiana.  Good hospitals, but............   We were uplifted some and ate at Outback.  That night and morning he went through terrible stomach pains.  Went to the ER and came out with hydrocodone.  That night I gave him enough hydrocodone to kill him.  I gave him 6-7 over the night period.  It did not touch the pain. The cancer, we knew nothing about had obstructed his mesenteric arteries.  They scheduled a liver biopsy with this man that took pain like it was nothing, after the liver biopsy and the pain medicine they let me in the room with him screaming for someone to please just shoot him, please help him, he was grabbing onto me screaming in pain.  The narcotic finally took hold.  I can only consider they let a first year resident do the biopsies because the pain is supposed to be bad, but nothing like this.  

When they put a stent in the mesenteric artery, the doctor told me at most he had six months.  His body was riddled with cancer, all over his body, in his bones, and yes, i believe in his brain as well.  How could we have missed this?  I am a medical transcriptionist, not a doctor. (But, in looking back, Billy's skin was sagging, why didn't I see that? To a trained eye it is called skin wasting, a sign of something bad)  I see words, not organs, blood, and guts.  I have seen scans, CAT scans, MRI's and PET scans.  I knew how to read an EEG and an EKG, but I mostly knew words.  I picked up a skipped beat on Billy's blood pressure (yes, I knew how to do this) and had him at our clinic immediately, they sent him to a cardiologist and we followed up, nothing really unusual, he was okay.  He went to his nephrologist twice a year (he had kidney stents in two arteries, he had three arteries,  an anomaly, or he would probably have died from hypertensive crisis/stroke, but this was in his 40's and he still saw a nephrologist twice a year.  He was interested in his kidney functions, I know he did not read his liver functions or we would have caught this lots sooner.  Yes, I am angry, but knowing this doctor like I do (I used to have him cry dictating a death summary on an elderly woman), I know he missed Billy's LFT's and I know he knew it.  He never sent a bill.  But, if the primary was liver, the results would have been the same, so why am I going to call this doctor who by not sending a bill, admitted his shortcoming, but still could not bring Billy back.  He was a nephrologist, he was only interested in his kidney function.

On Billy's death certificate it is called CA Colon.  He had one colon polyp.  What am I going to do?  Do I go back and make them read for a primary?  He underwent three grueling days of colon prep for the colon biopsy.  They dropped a tube down his nose to drain off cannisters of stomach fluid..  He was a tall skinny man who had so many IV's his weight was well over 200 pounds when we got him first home from the hospital.  He had home physical therapy and a home nurse twice a week.  From the time we learned he had cancer it took him five weeks to die.  There is that word, yes he died.  And my only saving grace is that he did not have to go through what his dad and my dad went through.  

I know some of you want to know the cause of death.  I know the ER was very negligent in not getting Billy back to a room.  I was popping him his pain pills (at their okay) and one time I went up and told them he was comatose.  We got to the ER in sunlight..  He got to a room at 4:30 a.m.  They were giving him ice cold fluids.  I was covering him up and holding him and his hyperventilating I could calmly bring down.  I was loving toward him because I was him and he was me.  But, I turned on him in anger when it looked like he was giving up..  My head was on his bed when I looked up at 7:30 a.m. and saw his death mask.  He was not hurting when we put him to bed.  He was not in pain.  And his death certificate says CA of colon.  Nah, I don't think so.  I don't want to even see his death certificates but I have more business to attend to so I have got to find that huge folder I have hidden from myself, not meaning to hide it, but have no memory at all of where I put it.  I have to find it.

Another book written.  I am sorry, some of you have to know the reasons.  There may also be medical neglect in a lot of cases and you have to find out.  I can understand your wanting to find out the reasons.  I understand.  And you understand also why, this is the last I write about this.  I cannot bring him back.  

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For me, and family, we had to know just went wrong. Walked (yes walked, no assistance) into hospital at ten am. Dead at 0230. First er doc said pulmonary embolism (heart rate 139's, bp 80/50, resp rate high 20's., oxygen sat 81 percent). Pulmonary embolism not found. They then said mild pneumonia...keep him overnight for fluids an antibiotic. Also dehydrated and some signs of kidney failure. Fast forward NO IV fluids or antibiotics til seven when he was transferred from er to floor. Thirty minutes later could not breath, terrified, intubated and then they considered sepsis (he had every sign of sepsis since ten am and even the sepsis protocol flag went up at two pm...guess no one saw it, sent to cat scan and had massive MI in cat scan. Found 7mm kidney stone. No urologist or cardiologist would see him for treatment as damage too bad. Unable to transfer to another hospital as too bad. Told he would not make it thru the night. He was on pressors (to keep bp up) , atropine to keep heart rate up and was on maximum doses. I knew this was not how he wanted to live. I choose comfort measures only. He was deeply sedated. He was extubated and died two hours later. We were married 52 years on February 6th. He was my all. I miss him so.hospital had sepsis protocol but was not followed. Now working with hospital Risk Management to hopefully see something like this doesnt happen again. Not out for monetary only corrections!

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For you and many like you Autumn, investigations need to be done.  My letter to the ER has not been written yet.  I sometimes think "what's the use?"  But, I retired from this hospital and they did save my life, but not through the ER.  I would have died too if Billy had not called an ambulance.  In thinking back, that is what I should have done, but he could walk to the car, both kids were there to help, and when I went I was comatose.  But, if I had helped him live longer, would I have put him in the position of his dad and my dad.  In my case, I cannot look back.  In many cases, the ER's, doctors, nurses, and others need brought to task. I see your point and the others.  I just cannot help anyone unless it is the wait in the ER.  Honestly, the fight went out of me when he left, but this is people I knew and worked with.  I should bring them to task, even though it won't help Billy, it might help someone.

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7 hours ago, Cookie said:

I had this idea that when the time came, we would know and sit by the bedside and love him out of this world instead of beating on him.

I don't know why, but a lot of my stuff is going to spam.  I don't know how to change it except go into it and change it into my inbox.  I think because we lost them we can think of so many things we should have done, but I have let that beat me to death for so long, I am trying to change.  Sometimes it comes out.  My daughter could tell I had been crying and asked why.  I told her about getting angry at Daddy for giving up and she said Daddy never would have faulted me.  And he wouldn't.  But I would and do.  Sometimes I can get rid of it.  People who have lost their mate through mismanagement of their care have a right to have that mismanagement brought to justice..  Like a murderer, I don't think I am a good enough person that I would not want that person to pay and pay and pay.  Not money.  I would want that person to suffer for killing my loved one, but some people do not get that justice.  Some people forgive.  I am a mean person.  

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Marg, I had a similar experience. I turned my back to my BF. I walked away from ICU. He was in coma. And I was angry at....the universe. No goodbye words. No I love you words. I knew asking him to keep fighting was pointless, I can tell you I felt death, death as an entity. I saw Death. It was there, in front of me, next to him. I will never forget. If I focus, I remember every detail and every feeling I felt, before and after. It is written with fire in my soul. 

I don't know what specifically caused his death. I am one of those who dont' want to know. When the doctor told us he was gone, I got up and left the hospital. Numb. Just like a business meeting being over. I collapsed 24hs later. 

I felt and still feel guilty, somehow my body, brain included in my body, activated its mechanism to soften it all and make my body and brain to survive. But If I focus, it all comes back to me. I don't focus.

I agree with what Brad said. It is true. Thank you Brad for your words. Our soulmates new of our love. They died knowing they were loved. They still know of this love.

 

 

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