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

[kayc]

20 hours ago, Marg M said:

Brad, it is just 16 months today.  I hate dates.

I'm sorry, Marg.  I try not to think in terms of monthly dates, it's bad enough to get hit with the annual ones.  If I had to go through that every 19th of the month...well, it'd just be too much.  I stopped doing that after the first year.  Can't do that.

 

[kayc]

12 hours ago, Autumn2 said:

.hospital had sepsis protocol but was not followed. Now working with hospital Risk Management to hopefully see something like this doesnt happen again.

I think it's important for us to ensure that what we've gone through doesn't happen needlessly to someone else.  I felt George's doctor was responsible for his death because he didn't take his complaints about heart symptoms seriously, he didn't send him to a cardiologist, he was dismissive of him...and then he died.  I made an appt. with him after George died and went in and spoke to him about it.  I didn't want to sue him.  Lord knows I didn't have the emotional where with all to deal with that, I wasn't after monetary compensation, nothing would bring him back, but I wanted to make sure that the mistakes made with him and another man would not happen again!

Your wanting the same thing is so important, I hope the hospital truly does follow their own protocol from here on out and what happened to your husband does not happen again.  We have to lend meaning to what they went through and suffered.

I'm sorry for your pain.

[kayc]

17 hours ago, Cookie said:

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?.....

Yes, absolutely!  Let us know how it goes...

[kayc]

On 2/16/2017 at 8:06 PM, Widowedbysuicide said:

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.

Marita,

My heart just breaks for you.  I think suicide must be one of the hardest death to endure.  That is one of the reasons I haven't committed suicide when the going got tough, that and my beliefs, but it seems when the pain gets so great even the beliefs or thoughts of others fades into the background.  I've had to remind myself of this over the years, and I've tried really hard to persevere, look for good, hold on, hope, etc.  I wish all the if onlys for your husband too.  I hope you're seeing a doctor about the physical pain you go through...that's our body's way of letting us know we need help with it.  (((hugs)))

[kayc]

1 hour ago, scba said:

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. 

One thing about all of our grief journeys that we have in common is that we have total recall of every moment of "the end".  It's indelibly etched into our brains, like a record stuck and playing over and over.

[scba]

On Friday, February 17, 2017 at 10:53 AM, Brad said:

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.

Thanks Brad. I take this for me too. 

[Margm]

Ana, my heart is with you.  I have tried not to focus and have been some successful.  I will tell you something the others and you too will probably think is funny.  My daughter did.  In the group GriefShare a mother had lost her son.  My friend who brought me to the meetings told me to go back through the obits to find this woman's son.  I have not read the obits since Billy left.  In going back through them I saw the picture of the girl he had cared for before he and I started going together.  He and I were kids, but he had gone with her for a long time.  I think she broke up with him.  So damn, he has three old girlfriends  that have passed on.  I guess he is not lonesome.  And, I say this in jest.  Mostly.

[Margm]

On 2/17/2017 at 10:58 AM, Cookie said:

They had said that it was 90% curable.

Cookie, when Billy's dad had skin cancers, we talked to his doctor.  His doctor assured us that those skin cancers were not going to kill Billy's dad.  This was before the skin protections, only wearing a hat.  He drove a tractor alongside the road, all day, every day.  He was at the doctor all the time to have the skin cancers removed.  Then one got inside his parotid gland and it was all over with.  He was a tall skinny man like Billy.  Billy took care of him the last months.  When he bathed him, he could hear bones break.  He carried him down to the squirrel woods (his favorite place to be), it was not squirrel season, the wildlife officer came by, it was right off the highway.  He left him alone.  I don't know if he killed a squirrel, but it was his favorite place and Billy carried him.  Yes, the skin cancers did kill him.  Dangers of his occupation, dangers of the time we lived in. And the poor doctor, no skin cancers are not supposed to kill a person, but even skin cancers can do that.  We had one removed from Billy's back, one that had been there forever it seemed.  He got all borders he said. (the doc).  But, could that have been the start of Billy's cancer?  Cannot know.

[martha jane]

I have poured over my  husbands  medical records and looked up words  I didn't understand.  All sorts of things were going on with his body that I didn't understand and don't know why he didn't show any symptoms at home. I don't understand how he got sepsis. He had a urinary infection but never had any pain from it at home.  The thing that bothers me is they sent him to rehab while he couldn't even walk or stand. My only other choice was to take him home and I couldn't do that I had no way to care for him. He was in rehab for 5 days. During that time he was neglected. On the last day they found him in the floor. I don't know how long he was there but I keep wondering if he was calling for me, wondering why I didn't help him get up. He had fallen at home several times and I always went running to help him up. He was laying on that hard cold floor alone until they found him. I am trying to get his records but they refuse me because he had no will and I need to be named executor of estate. I went to a lawyer and he wanted $250.00. I can't spare that kind of money.  Everything we owned was in my name also. I was named beneficary on most everything that had to have one. He owed no money except on our mortgage and my name is on it too and I have to finish paying it off. We don't need someone to distribute his belongings and take care of his debt. There is just me and my children and they certainly don't want to take anything from me. I am trying to get them through Public Health. I was told they can get them for me. My husband was heavily sedated with morphine so we had no I love yous or good byes . When his eyes were open he looked through me not at me. After hospice came he never spoke and barely moved again. I spent 43 days at his side and I still don't understand why he died. Sepsis. I never heard of it and did not realize it was a killer. I now wear a red rubber bracelet that says Suspect Sepis, Save Lives. And I preach it every chance I get. And today I feel awful. Just sitting here crying and its raining outside. And on my husband's grave.

[KarenK]

Martha, I'm not sure where you live, but are there any senior citizen facilities near you? Sometimes they can help with things at no cost or a discount. Perhaps with legal matters? Just a thought........

[Autumn2]

I am big on Sepsis Alliance because my hubby died of it eleven weeks ago. Not diagnosed or treated in a timely manner. I could go on and on. I was working with Risk Management at the hospital. The gal was great and was due to send me an email outlining their plans to prevent this in future. Had not received this so called. Guess what she is no longer there and no one has filled her place as yet. I surely hope she did not lose her job because of me because she did say hospital was responsible for not following their written protocol. I saw her two weeks ago and apparently last Monday was her last day. She never alluded to leaving and took notes for the report we requested. Will be interesting to see what happens.

[Margm]

There used to be people that would take limbs woven together and flog themselves as self punishment.  My shrink told me I would not have been bold enough to go against what I believed in if it was not for the legal prescription black mollies.  I know they sure made me friendly.  I would like to think that was true.  But instead, periodically I flog myself with the limbs just to punish myself.  I talked to my pastor and told him I thought God gave me the cancer to punish me.  He looked at me and said "God is not a punishing God" like that.  Well, in my Missionary Baptist Church I was taught that I would be punished.  I asked "the guy" didn't he feel guilty.  He said "no, I confess my sins to the priest."  I confessed mine to the shrink.  And other times I would flog myself with the limbs (figuratively).  I find myself sometimes still doing that.  

I still think Rose Kennedy, who had the experience, who toiled out a very long life knowing her husband was a philanderer, she lost one child after another to war, to assassination, had her daughter have an operation on her brain and institutionalized, because that is what her husband thought ought to be done.  She did not know.  Still she was a wife to him and had more children to die or be assassinated.  Then her husband died.  (She should have thought "thank you God" but I know she hurt just like the rest of us.  And she told us that time does not heal wounds.  The brain protects itself and  builds up scar tissue on these wounds, on these hurts, and sometimes it gets knocked off and the hurt is as bad as ever, but again, scar tissue covers the wound.  That is all we can do, like she did.  We can allow scar tissue to build up over this wound, a wound that won't quit hurting, but possibly a wound that sometimes we might forget hurting for a few minutes, a few hours, a few days even sometimes and the guilt will go away also.

In the meantime, if you have someone you have to take care of, someone you have to help, do that.  It won't make the scar tissue hurt any less, but our mind might not be on that hurting wound constantly.  

I cannot give advice, I am probably the worse person in the world.  The only 10 commandments I did not break was I have not killed anyone.  But, I'm not through yet.  I don't think I have wished for things my neighbor had that I didn't either.  

 

[Finch]

I have been unwell the last couple of days. This has involved a few rather fierce headaches. Every time I have one I break down and cry because I realise as much as it hurts, and it hurts alot, it's nothing to the pain that Crystal likely went through with the headaches she had towards the end. I just cannot bear her being afraid. That's the worst thing.

[DaveM]

5 hours ago, Marg M said:

In the meantime, if you have someone you have to take care of, someone you have to help, do that.  It won't make the scar tissue hurt any less, but our mind might not be on that hurting wound constantly.

Marg, I think that is how I survived my younger son being killed by a car in 1999. I still had an 11-year-old to take care of, and a wife who was disabled. Scar tissue built up around that wound, but unfortunately scarring is not always healing. It covers, somewhat protects, but does not heal. The marriage, already not good, limped along another 14 years, but was done for. The only thing that kept me in it were the vows. But our remaining son, we had to be there for him. So grieving like we are doing here was scarred over.

Now I am doubly grieving, crying over my son as well as the love of my life. This time there is no one else to take care of. And I don't know how to take care of me.

Thank you all for being here. I am so sorry any of us have to be here, but knowing I am not alone on this terrible journey somehow helps.

[Margm]

It has been said that time heals all wounds. I don't agree. The wounds remain. Time - the mind, protecting its sanity - covers them with some scar tissue and the pain lessens, but it is never gone. Rose Kennedy
I repeat what Rose Kennedy said.  She was 104 when she died.  She had had nine children and I think five outlived her.   I think one is still alive. Her daughter-in-law Jackie once told a priest (I think) that she did not think her MIL had good sense, she would rather hold /read her rosary than a book.  I have two friends who have lost their husbands.  I have many more than the two, but these two women, if I go to their house, they have their Bibles open, more than one Bible, but they are open at every place they sit.  I envy these women their faith (that passes all understanding).  

I quit GriefShare because of the many lost children and I could not bear their grief.  Now you  Dave, Karen, and I think one more I cannot remember right now.  Your losses are so tremendous it makes me feel two inches high.  I have to climb up chair legs to sit down.  My children's lives hang on by threads.  My son was so into drugs and a mafia sort of group that he went to beat up a man to collect drug money.  He got shot by the man and coded on the OR table and they had to take him back to stabilize him.  The forest rangers found us in a secluded spot in the Gila National Forest, could not, would not tell us the emergency.  I called my friends at my hospital where I worked, where he was, and they knew we were traveling at a great rate of speed to get home.  Told me he was shot in the leg.  He was.  Now how bad could that be.  I found out. I talked to one of his surgeons (also a close friend). A major artery and they wanted to remove his leg.  He declined.  Right now his 31 year old son, my only grandson, is lost somewhere, homeless in the wilds of California's drug forests.  His little brain is fried.  

But you brave people that have lost your mates and a child, you make my grief, my crying sound like a sniffling baby.  

Now Dave, I add you to Karen, and the other people on here that have lost children and mates.  

I have no answers and I admire Rose Kennedy her faith.  I admire my two friends their faith.  And if there is an answer for me, it is to find that faith that I have lost.  It is not for everyone, and obviously, since it is not providing me solace at this moment, I am still searching, I still have my mustard seed faith, you see.

"Time, the mind protecting its sanity" is what I hang on.  At one time I was fighting cancer, Billy was in ICU, I was working two jobs, and going to a shrink.  I lost my mind.  One night I was driving home from the hospital, from the ICU (my daughter, a nurse, wanted to stay with him, so did I).  He told me to go home.  Driving  home a car came into my lane, headed directly for my headlights.  I felt my body float to the top of the roof of the car, I was not in control, then all of a sudden I was driving again, the other car was gone, I was safe.  Another time, I got lost on the way to the shrink's office.  I lived here for gosh sake, how could I be lost?  My mind left my body more than once. (And, at that time "Jesus Take the Wheel" had not been written).  I tell this now because I understand what Rose said.  "The mind protecting its sanity."  I asked Linda, my long time psychiatrist what was wrong with me.  The mind, protecting itself goes into something called "dissociation" and some of you may have already had that.  You won't admit to it because it is just pure downright insane.  Yes it is.  But, it is your mind protecting itself.  It happens.  It happened to me more than once.  I cannot make it happen since Billy left though.  Not even in the moments after his death.  

I used to see people brought in by the police on my 11-7 shift at the hospital.  Maybe full moons bring out the insane.  One believed he was Jesus.  My supervisor, her sister was in a nursing home, she thought she was Mary, Jesus's mother.  She would write letters addressed "To the Whore of Babylon" and her sister would get her letter mailed to her house.  Some came in thinking they were a king, or some other celebrity.  I always felt sorry for them because their dose of reality was a drug that made them mindless and what was wrong with them thinking they were king, or even Jesus?  

Okay, my morning word salad.  Dave, if I can get a prayer above the ceiling, you and all of us are getting one from me.  I'm counting on my mustard seed.  

 

[kayc]

Martha Jane,

Have you talked to the social security office about increasing your income due to his death?  I've heard some people's gets increased because of it but I don't know anything about that, I do know it wouldn't be an automatic thing, you'd have to apply with them.  Perhaps you could put $25/month away for ten months and then have it done.  There is usually free attorney services for low income people, you'd have to google it for your state.  A call to senior services might be a good place to start, as was suggested above.

[Widowedbysuicide]

6 hours ago, Finch said:

I have been unwell the last couple of days. This has involved a few rather fierce headaches. Every time I have one I break down and cry because I realise as much as it hurts, and it hurts alot, it's nothing to the pain that Crystal likely went through with the headaches she had towards the end. I just cannot bear her being afraid. That's the worst thing.

Finch you need to know that I understand your physical pain and I'm sorry for that.  Your emotional pain is something different.  I think that your circumstances of not being with or near Crystal near the end are probably a torment that is overwhelming.  I know some of the pain of not knowing how our loved one suffered but I had so many years of togetherness that I can remember and gain some courage from.

Thinking of you my friend.

[martha jane]

Kay C I am receiving my husbands social security because he drew more than me. I only had to let them know and they began sending me what I was entitled to.  I am not in bad circumstances, I got insurance money but I don't want to  spend any of it unless I have to.  I plan to buy a prepaid funeral so my children won't have to worry. My husbands cost 10,000 dollars and it was very nice. If I purchase one even if it goes up in years to come I will not have to pay any more. I just don't feel like paying a lawyer to do just a simple thing that I don't think I should be required to have. I have contacted an obudsman and she is going to try to help me and referred me to Public Health. I got a call back but I was at a Doctors appointment . Will call her Tues and see if she is going to be able to help me. They also have lawyers that don't charge if they think it is something that I should have. IF they would just let me come down and sit in an office and view them,  I don't have to have copies. I just want to satisfy my mind. I was told that an unwitnessed fall had to be reported to Public Health.  I don't know if it was reported. I guess they think I might be thinking of suing them but I know the fall did not cause his death, they xrayed his head and shoulder and found nothing. He did have a bruise on his hip but don't think anything serious was wrong there. I just think they put him out of the hospital too soon but I can't prove it. 

 

[kayc]

On 2/19/2017 at 2:27 AM, Finch said:

I have been unwell the last couple of days. This has involved a few rather fierce headaches.

Finch, I hope you'll get checked out by a doctor.  Headaches for no apparent reason are not something to dismiss...How is your blood pressure?  Your vision?  I hope it's a virus and nothing more serious.  Wishing you well!

[heymialouise]

On 2/16/2017 at 7:23 AM, Finch said:

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. 

 

 

 

Oh Finch, 

I know exactly how you feel, it's agonizing to watch the ones we love, in pain.  The only source of comfort I can offer right now is the assurance that Crystal is no longer suffering.  No matter how hard it is to redirect your thoughts, you have to try and remember how at peace she is now.  I had the pleasure of following a blog about a basketball player and his wife and praying for this couple who were going through a battle with cancer.  Unfortunately, he passed away 2 years later, but his wife focused on the time they had together and how important it was for the people who followed to know he lived each day to its fullest.  Despite the pain, she reminded us that he would have wanted us to remember the best, not the worst.  Choose the best about Crystal, not the worst, and hold on to the fact that she knew you loved her. 

 

[Margm]

On 2/16/2017 at 6:23 AM, Finch said:

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. 

None of us are at peace.  My cousin and I used to argue (friendly) that her dad dying of a heart attack took away her chance to say goodbye.  My dad being in such horrible pain that he would get ulcers on his heels from digging them into the egg-crate mattress.  The morphine did not take care of his pain.  We would go for days through his Cheyne-Stokes breathing, we would pray that would be the last breath, then he would gasp again.  He was comatose but got to choking on his own secretions and they put a snog machine on him.  The only time I saw him open his big brown eyes, he was only 64.  The shock of the snog machine made him open them in terror.  So, we had plenty of chances to say goodbye, but my cousin's dad was gone in an instant.  She did not watch him suffer unbearable pain.  

Many on here got to watch, (had to watch) inhuman things being done to our loved ones.  It was a part of life and death that I wish, that they wish they could forget, but the movie keeps playing before our eyes.  Not the imagination movie, the real-life movie.  I hope Billy's heart just gave out.  He had been in such pain.  That is something you do not ever want to watch or even imagine.  You are never ready to say goodbye.  There are some horrors that families have to see that they wish they could forget.  

Billy is not hurting.  I am hurting.  Our loved ones are not hurting.  We are hurting.  It was so true what Billy said, simple words, but true all the same.  If you die your worries, your pain will all be gone and those left behind that love you are left with the worries and pain.  My cousin's dad is gone.  She did not get to say goodbye.  He may have hurt for an instant.  My dad is gone.  His long goodbye was inhuman to witness.  We do not let our pets suffer like we let humans suffer.  But still, they are not hurting anymore.  We are left with the worry and pain. There is no peace for any of us. It is what it is.  We all have a hard time handling reality.  That is why we are here on this forum.

[Autumn2]

Sorry for everyones loss and some of our horrific memories of their passing. Out of curiosity what is a snog machine? I am not familar with that term.

[Margm]

Autumn2,  sometimes I talk in a medical language I was part of for over 40 years.  I checked on google and honestly could not come up with it.  Not even a real acronym for SNOG.  This was 1984.  It was a loud sounding machine that they inserted, probably down his nose or throat to suction off the secretions that were choking him, smothering him.  This kept the dying man from dying by suffocating from his own secretions.  Like I said, we are kinder to  our pets.  The disease had hit that terminal stage that there was no hope except to make him as comfortable as could be, which was not very comfortable.  (He was comatose for days, just struggling through the pain.)  My sister-in-law had lung cancer.  Billy and his nephew (both by now middle aged men) went out of the room.  She was asleep peaceful.  She was not struggling for breath, no  agony, no machines hooked up anywhere, she was comfortably dying.  (I wonder if that is possible).  But, I was watching her.  Never a grimace, no struggle, no movement whatsoever.  Just like a clock that you wind up and it quits ticking.  I noticed the sheet was not rising and falling with her breath.  I got Billy and his nephew to get the nurse.  The clock just quit ticking.  I wish we all had that memory.  

[DaveM]

Marg, because I was not there, I have to hope she went as peacefully (seeming) as your Sis-in-law. The investigating officer that found her said she was on the floor with a blanket over her and her head on a pillow. He was more clinical, but said there was no sign that she was struggling or in distress. Her hands weren't clinched. So it appeared to him she just went to sleep and did not wake. She had back issues from time to time, so that is probably why she was on the floor. Because she had been gone probably over a week, a life-long history of asthma, recent pneumonia and malnutrition, there was no autopsy. But she had been in pain for 5 months, and could not eat solid food. If I could have been with her, maybe things could have been different (Oh how we all have a variation of this). I do know she would not have died alone.

[kevin]

My Angela was taken from me suddenly, and I was upset for sometime.........Then I got to reflect how fortunate Angela was(and Myself) to be taken that way...We were sitting in a Movie Theater and she passed with hardly a sound...A Parametic was in the theater and within 60 seconds we were working on her....no response....That quick, unbelievable....I was taken to the hospital by a friend about a  week after the funeral......Showed me the quality of life a few stroke survivors have to endure. It made me rethink my Anger ......I was Angela's care giver for three years and it wasn't difficult at all compared to what a lot of you had to go through....my deepest respect to you all....kd