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My beloved wife, Annette, was really in a lot of pain before she passed. I remember that the last time she had to walk just a few feet across a ramp (from the house to the car) it was torture. She squeezed my hand for dear life and slowly inched across. She had severe Rheumatoid Arthritis and a myriad of other health problems. I had no idea how I was going to get her in better shape. Her doctor had her in a rehab facility after a hospital stay, but she hated it and wanted out immediately. After two weeks in the hospital (not able to see me because of COVID), she didn't want another two weeks or more in a rehab facility where they didn't even have her prescribed insulin. 

After a below knee amputation in 2014, she was wheelchair dependent (with the Arthritis and her weight, walking was a challenge), and so her strength was really compromised, making her dependent on me for a lot of things. She was also legally blind, and so she was very dependent on my eyes, and just lost the will to be social or go out much. When she was healthy, she was so independent (and really didn't ever want to marry- I wore her down). She also hated having to wear adult diapers, and so coupled with her poor eyesight, limited mobility and depending on me for everything (and being in constant pain), she was, honestly, not happy.

I struggle with this, and wonder if she was better off passing away. Nobody wants to die, but life was very, very hard, and I know now that she's in a better place, with no more pain.  Am I just trying to make myself feel better, or is there a point where it's more merciful for your loved one to be free of pain?  I actually am of the belief that God has a plan, and she told me that she believed she would not live a long life.  I ultimately just want her to be happy, and hope that she's happy now. But is it wrong to believe that it was a good thing? Obviously, it is horrible, and I miss her terribly- but I feel better than I would if it were a death from a horrible accident, if she had been healthy.

Just thoughts that I can't shake. Thanks for your time.

James

 

 

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I was never a caregiver, so I can't relate to all aspects of your situation. But I say no, it is not wrong to think this way. My friend, who managed his cancer with grace and courage, was not afraid to die, but he was afraid of pain, and the loss of cognition that would accompany the inevitable morphine drip. He contemplated assisted suicide, but his wife wouldn't hear of it. In the end he died instantly, of a heart attack, before reaching the end staging. As shattering as the loss was, its swiftness and (I was told) relative painlessness were one of the few comforting elements of his story. Your loving wife Annette was lucky to have you, and she is now at peace. May her memory be a blessing. 

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21 minutes ago, razorclam said:

Your loving wife Annette was lucky to have you, and she is now at peace.

I agree with this completely, James. And your believing that your beloved Annette's death was for her a blessing makes perfect sense to me. I wish for peace and healing for your broken heart. ♥️

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I watched Steve fail cognitively and physically for weeks, the last 4 days a nightmare.  It is not a place I go back to so this is hard.  Reading your post reminded me of how I came to feel that it was more cruel what he was going thru than set free.  I know he would have been horrified if he could have seen himself, not how he would want anyone to see or remember.   I crumbled, even literally, when I got the call he passed as I was preparing to go over as I did every day.  But a part of me felt relief it was over for him.  I lost the love of my life and also felt relief.  Part was because that was not him anymore.  That relief existed to get me thru a week of informing people and fueled me purging the house of all medical supplies he used.  After that the 100% grief hit and I was on my way fully on this journey.  Still hiking the trail.  It won’t end til I do.  

He got a few years he could do what made him happy.  When that was stolen from him, he could never be the man he was so the answer I feel is yes.

we survivors experience what it is like to not live the life we wanted so that proves it to me.  

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1 hour ago, razorclam said:

I was never a caregiver, so I can't relate to all aspects of your situation. But I say no, it is not wrong to think this way. My friend, who managed his cancer with grace and courage, was not afraid to die, but he was afraid of pain, and the loss of cognition that would accompany the inevitable morphine drip. He contemplated assisted suicide, but his wife wouldn't hear of it. In the end he died instantly, of a heart attack, before reaching the end staging. As shattering as the loss was, its swiftness and (I was told) relative painlessness were one of the few comforting elements of his story. Your loving wife Annette was lucky to have you, and she is now at peace. May her memory be a blessing. 

Yes, being her caregiver was very hard.  Juggling her doctors appointments and trying to stay positive was my job, along with my working- even though I'm on disability.  It hurt her pride so badly that she couldn't work. She wanted to pull her own weight and it broke her heart. She had a lot of depression, along with the Type 1 Diabetes and Kidney Disease and everything else.  I only wanted her to be happy- always.  If she couldn't be happy in this life, I'm glad she's happy now.

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12 hours ago, nashreed said:

is there a point where it's more merciful for your loved one to be free of pain?

Absolutely!  If only it were so cut and dried as that though...WE experience relief at their being out of their pain & suffering, but at the same time miss them unbearably and want them back!  I doubt any of us would REALLY want them to suffer for our benefit though, so we have these mixture of emotions, which are just that, emotions, to be felt and dealt with, neither good nor bad in and of themselves.  It's not uncommon to feel a mixture of feelings at the same time, even when at odds with each other!  It can seem incongruent but really, it's natural for us to feel all that we are feeling, nothing plain and simple about this grief we live with!

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I've mixed feelings about the subject of this thread. I've felt that death could ultimately be a good thing for my bf, who too had a chronic disease....But at the same time I feel it as to acknowledge that what happened was the only option for him. That there was never another possibility. Not healing. Just slipping and dying. I struggle with this concept 6 years later. What's the point of thinking of it now? I don't know. All I know is that I will coexist with survivor's contradictions for the rest of my life. 

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5 hours ago, scba said:

I've mixed feelings about the subject of this thread. I've felt that death could ultimately be a good thing for my bf, who too had a chronic disease....But at the same time I feel it as to acknowledge that what happened was the only option for him. That there was never another possibility. Not healing. Just slipping and dying. I struggle with this concept 6 years later. What's the point of thinking of it now? I don't know. All I know is that I will coexist with survivor's contradictions for the rest of my life. 

I wish life had been better for her. She had so many just genetic strikes against her. I truly hope my love made her pain more bearable. I often think about what the months would have held in store if she was still here. I would still be freaked the freak out about her getting COVID. The Winter always made her ache because she was very sensitive to the cold (she would literally just park her wheelchair on the heater grate).

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I had to mull this one over for awhile before responding.  Like others whose beloveds were caught in chronic illnesses, I feel the relief of knowing he no longer has to endure dialysis, get up at 4:00 AM three days a week to go to the dialysis unit, come home, rest, maybe some TV or Internet, eat dinner, go back to bed.  I feel the relief of knowing Covid can't touch him now.  I feel the relief of no longer getting calls from unknown numbers and wondering if it's someone from the unit or the hospital telling me he's been hospitalized.

I like your term survivor's contradictions, Ana.  It's a good way to phrase it.  Thank you.

On 10/11/2020 at 6:39 PM, nashreed said:

But is it wrong to believe that it was a good thing?

Wrong as in morally wrong?  In my case, I don't think it's wrong, because I'm convinced he came to the conclusion, lying there in the dark by himself one night, that he had no more desire to keep going.  I believe he came to the conclusion that his life upon discharge home would be just as I described it in the first paragraph-- only worse: he would be discharged home being completely unable to walk or bear weight, needing personal care attendants, needing specialized transport three frickin' times a week in and out of the house, and worst of all, be a huge burden on me and to me.

The thought that I cannot shake is, "Why couldn't he tell me this, out loud?"  I feel like we were robbed--again--of any chance to level with one another over his apparent decision to let go.  Not only were we robbed of any possibility of hospice by the incompetent rehab center social worker or the cold and heartless charge nurse--neither of whom could recognize the signs of a person getting ready to die--everything had to come to the point of being sent to the hospital overnight when he became essentially nonresponsive.  Just like I told the nurse, something was wrong, out of character for him.  Did anyone listen or acknowledge?  Nope.  And that's not even the last of the things we were robbed of.  Even more things happened right up to 15 minutes after he breathed his last.  Maybe I'll write about it later.  I don't know.  I don't know how people eventually come to terms with being so badly failed by "professionals" who are supposed to be able to see signs, educate, help, and give support.  Maybe that's why I like Ana's term survivor's contradictions.  That's about the only way to begin to describe the massive complexity of how I feel about it all.

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I so feel for you, Kieron.   Your description is so heartbreaking.  I was shocked I had to move Steve from hospice because he didn’t die fast enough to a facility not as well equipped.  He took 4 days too long.  Meanwhile we are the ones dealing with the details while watching our loved one slip away.  Left with these horrid memories.  Helpless now of how we couldn’t fight the 'machine' of medicine.  Our partners deserved better, especially when they couldn’t speak for themselves.  If I weren’t so emotionally attached to him, I know things that went wrong.  So Ana is right.  It is survivor contradictions.  I couldn’t step back and see the forest for the trees.  It was a terrible position for him and me.

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17 hours ago, nashreed said:

I truly hope my love made her pain more bearable.

I think your love meant all the difference in the world to her!

 

13 hours ago, Kieron said:

The thought that I cannot shake is, "Why couldn't he tell me this, out loud?"  I feel like we were robbed--again--of any chance to level with one another over his apparent decision to let go.

I think it must have been very hard for them, maybe they felt they were letting us down and only had strength to deal with their own mortality at the time.  I know when George was having his final heart attack, I cried out, "Hang in there, George!" twice, and twice he shook his head, "no."  I was about to tell him it was okay, I'd be alright (white lie, right?!) to reassure him, to give him peace, when the blasted ice queen (nurse) threw me off the ward and locked the door behind me.  I was robbed of the chance to reassure him, to be with him as he embarked on his next journey.  I often wonder if he felt I deserted him in his time of greatest need.  Could he even comprehend what was going on when he was in such great pain?  I will never be satisfied as no answers.  I despise the ice queen's interference.

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I'm sorry Kay. I know what it's like. There are so many weird things that didn't make sense the night she passed. I just hope that she was asleep- that she didn't feel the chest compressions as I'm sure they must have cracked a rib or something.

I don't think that Annette gave up, so much as her body gave up. I know that she didn't have a fear of death. She knew where her soul was going. I wish I knew if she had felt that her time was coming. She never would have been able to tell me because she knew I would have freaked out.  I don't think she wanted to leave, but she was ok with it. She was in so much pain that I think that she just wanted it to be over- or I could be saying that to make myself feel better, but I know how she was. The last picture I took of her shows her to be just so sad and tired, no light in her eyes.  I feel so damn selfish because I felt some relief that my stress had eased. I feel guilt because I sleep so much better now. I used to constantly worry myself to sleep thinking that she could fall out of bed (she did a few times) or her CPAP got knocked over, all sorts of things. 

Again, I miss her so incredibly much. I ache for her. But she's not in pain. She's happy and I love her. Even though we're separated, I want what's best for her, always. 

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I don't think George wanted to leave me so much as he couldn't take the pain, his eyes bugged out, I knew it was severe.

You aren't selfish or guilty of anything, we're all human and it's common to have mixed emotions for different reasons, that's human and not guilt.  But these are all things we've grappled with. :wub:

Shoot, I felt horrible regret when my dog passed because they botched the euthanasia and what should have been a peaceful release was anything but.  I feel so sorry, Arlie.  I'd take it on myself a million times if only I could have spared him!  How we feel about our spouses is no different!

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This topic definitely hit a nerve. My spouse had health problems which I don't deny, but 2 days before he went into the hospital he was employed full time as a a Security Guard. He was ambulatory, on no kind of oxygen & was 100% coherent. He did have an infected wound on his heel that was made worse because of his diabetes. He did not have Medicaid because he was employed, he couldn't afford the health insurance through work because the premiums were through the roof & he didn't have money stashed away. He went from being the man I described above to being on the highest level of oxygen full time, he started having tremors so badly, there were times he couldn't hold his phone to talk, he was cold all the time, he had moments of incoherency where he would text me gibberish or I would be on the phone with him & he either would stop mid sentence and forget to finish it or he had to think about what he wanted to say. He also had a few instances with hallicinations & hearing things that weren't there.

This was NOT the man who walked into the hospital under his own steam and filled out all his required paperwork! He was then transferred to a Rehab Center for indigent patients & lets just say his care went downhill from there. Thanks to Covid restrictions, which he didn't have, I wasn't allowed to see him the last 3 weeks of his life. I feel very guilty for not being more proactive in his care or lack thereof. I should have raised all kinds of hell, especially with the Rehab Center. When he suddenly passed away I was devastated. I wasn't interested in money, but I wish now I would have filed a lawsuit against that place just so I would have at least known what he died from. They just listed his medical conditions as "natural causes". I miss him like crazy and I would give just about anything to have him back, but at the same time he was looking at being hooked to oxygen 24/7, needing help bathing, wearing diapers, having to be cleaned up, and eventually dialysis, along with multiple Dr's appointments which would have meant getting him around through narrow doors & an extra wide wheel chair.
He was a good man, & that was no kind of life to wish on him or anyone else. I would have never wanted him to suffer like he did, but I'm still just so lost without him. It makes me seem selfish & cold to question his death.

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OMG, I really feel for you, that's horrible and the worst being that he went through this and no answers for you!  They should have said why he went downhill so fast, why he died!  What caused it!  But at the point they die, esp. so suddenly/unexpectedly, we are in shock, our brain in a fog, least able to demand the answers we need!  I think I'd still contact the place that was taking care of him and demand to know...but I'd be willing to bet they'd cite the patient confidentiality crap, the person is dead, I'm the wife, WTH!!!

 

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9 hours ago, KnVsMoM said:

It makes me seem selfish & cold to question his death.

I respectfully disagree there.  It makes you seem like a normal human being.  None of us wish that kind of life for our loved ones.  And your sense of guilt for not raising hell, well I get that very much.  This all happened to my partner pre-Covid, so we didn't have that extra layer of difficulty that you did.  😟

When I read your description of his deterioration, my first thought was sepsis.  Sometimes it's called septic shock or septicemia, and it's often fatal.  It's incredibly common.  Sometimes death from sepsis takes awhile but ultimately the sheer number of bad bacteria proliferating in the body overwhelms defenses and poisons the blood, so to speak.  That's what septicemia means: septic blood.  I'm not a lawyer or doctor but my educated guess is "natural causes" is code or euphemism for sepsis.  I, too, thought about going after the "rehab center" (not the hospital) for failing him as I described elsewhere, but I didn't have the energy at the time.

Recently hospitals were required to develop protocols to identify sepsis before it can flare up.  In our case, the hospital missed the signs as he seemed to be recovering, but then a boomerang effect occurred and he developed a super high fever and went unconscious.  THEN they got him on antibiotics and cooled him down using a cooling wrapper for the whole body to bring down the temp.   The septic bacteria like to lodge in the joints, especially, so in the hospital, they had to operate on wrists, knees, shoulders etc to clean out pockets to septic bacteria.  It just about killed me to see how he had been cut open so many places, still kept sedated and on a ventilator etc etc etc  Jeez.  Some people recover, like Mark did for awhile, but I learned later that the effects on the brain from the bacteria, the lack of oxygen, the induced coma etc really changes the person and reduces function, cognition etc.  Also dialysis takes a lot of blood out of the body which then deprives the brain of needed oxygen-rich blood, and people on dialysis often develop early onset dementia.  This is particularly true for people who are Hispanic, Black and Native American.  And I learned all this because of what I saw him go through, after the fact, when there was absolutely nothing I could do.

if I knew then what I know now... 🙄

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44 minutes ago, kayc said:

but I'd be willing to bet they'd cite the patient confidentiality crap, the person is dead, I'm the wife, WTH!!!

The rehab center tried that with me and I had to pay something like $35 for a paper copy of his chart notes, which were ultimately inconclusive.  The charting was atrocious in terms of language, clarity, spelling, etc.  As for the hospital, I was denied those records because we were not married and even though I was listed as his primary contact, they refused and said his legal next of kin (sister) would have to ask for the records.  I think I gave up at that point.  Just no energy.  The sense of futility was too much.

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Kieron, I'm so sorry to hear of the pain your loved one suffered. It sounds like he was put through hell and back. My condolences.

Shawn, my husband, had actually had his heel operated on, was on a multitude of antibiotics & had a wound vac on his heel, MOST of the time. It was supposed to remain on for 4-6 weeks, but he had some stupid/lazy nurses who didn't want to mess with it so it was off for a few days. It was back on the day he passed away & he had actually had an appt with his foot Dr the day before. I figured if she had found anything sketchy with his wound she would have had him readmitted to the hospital.
The EMT that worked on Shawn said he may have passed from a pulmonary embolism which he had had in the past.

Just like yourself, I was so devastated by Shawn's death that I just wasn't up to dealing with the emotional roller coaster of a lawsuit, but I could kick myself now for not doing it.

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There are so many questions and "what if's" that haunt my wifes passing. I know that she would really just want me to stop thinking about it. It's very, very hard to stop thinking of it. She was always telling me to relax about "accidents", because I would always freak out about things falling or going wrong and she always had to calm me down, saying "They're accidents. That's why they call them accidents".

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7 hours ago, Kieron said:

if I knew then what I know now... 🙄

What could you have done differently?  I know I learned things after the fact with Steve that could have eased his passing.  But his dying was a given.  His mother died from sepsis.  We didn’t know what it was til we researched it.  All I remember is hearing if she ha gotten to the ER sooner, she may have lived, I think.  It’s a blur now.

I guess I’m confused as to if you knew that was what it was as it was happening but powerless in some way or the doctors handled the treatment wrong.  I never knew anything about taking blood and coma part.

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20 hours ago, KnVsMoM said:

 

.
He was a good man, & that was no kind of life to wish on him or anyone else. I would have never wanted him to suffer like he did, but I'm still just so lost without him. It makes me seem selfish & cold to question his death.

When my boyfriend was pronounced dead, after a week in coma from a challenging surgery....I was sitting on the hospital aisle floor. The white roof light shinning, an empty corridor at 4am. I was like a soldier lost in battle, laying on the mud. I couldn't ask what happened, what ultimately caused his death. Was it sepsis? Was it the surgery? His trusted doctors, what did they do? I lost. We lost. I failed. They failed. God, I, They.... I got up and walked away, to never return. We weren't married and I was too young to fight against what couldn't be changed. I question his death, I mean, my heart questions his death.

 

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My heartfelt condolences on your loss.

A lot of what you described sounds like not only the old me that this just happened to, but the young me almost 30 years ago when my daughter's Dad was killed on the job. We weren't legally married, I was in my mid 20's & with a 2 1/2 yr old and a 9 month old, I was crazy with grief. I knew what he died of though & my daughter's were what kept me going. Now, I'm in my mid 50's, my daughter's are grown & I have no answers as to why I'm now alone & my soul mate died.

Now all we can do is try to survive the guilt, live with the unanswered questions, and maybe in between all of that try to find some bit of peace because in the end we can't change a damn thing. It happened and we are the ones left behind.

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I started this thread to try to shed some of the overwhelming guilt I had for not taking better care of my wife. I felt like I could have made better decisions and there are so many regrets. Not only did she have severe Arthritis pain, a prosthetic leg and was legally blind, but she was also having hallucinations. I don't know if they were from the Prednisone or the Opioids or some other medication or from her sleep apnea problems, but they were really scary and I really sometimes wondered if she would be better off without all this suffering. I know now that I didn't cause her passing and it was an accident. I can live with that now, knowing that her suffering is over. I'm grateful that I was able to handle her passing and am able to help her sister and father through this as well. I guess I never knew what strength I had. I know that she is looking out for me now and that I am going to try my best to make her proud.

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