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I feel so guilty; sorry for rambling


Kay2021

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@KayC Thank you for your kind words as always. I am trying to get out of this rumination but it's so hard. If I think I am on top of this guilt, then there's another guilt waiting for me to tell me off. His absence is already so heavy in my heart and unbearable and then I have this guilt plaguing me. I feel like it's me that caused this pain. I don't know how my brain works at the moment. I just don't understand why such good people like your MIL and my husband had to suffer from cancer. I am so sorry that your MIL had to go through such pain for a long time. I am trying to draw comfort that at least he is pain-free now. Thank you for the links and I have read all of them and they were helpful.

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foreverhis

I won't go into the details because I'd be here all night, but suffice to say that several things you wrote there closely mirror parts of John's cancer journey.  The guilt for me was overwhelming and crushing for a pretty long time.  I have worked hard at looking, really looking, at what I could or should have done better and things over which I had no control.  I've asked John many times to please forgive me for the former and am learning how to shift the latter from guilt to regret.  In some cases, I've had to figure out how to resolve my anger at the medical community for the ways they let us down.  John had good doctors and lousy ones, like most of us have experienced.

12 hours ago, Kay2021 said:

I watched him die slowly in front of my eyes through the night. It was just my husband and me all night.

Yes, I sat with John all that last day with only the doctors and nurses coming in as necessary.  He was on comfort care by then, so we had a huge private room with beautiful view and finally quiet and calm.  I don't remember when he closed his eyes for the last time and rolled his head toward me.  I only remember that there were times I had to look away because my heart decided that if I didn't see him take his last breath, then it couldn't possibly have happened.  And yet, I would not have wanted to be anywhere else but by his side, stroking his forehead and holding his arm, telling him I was so sorry and that I loved him so much.  Yes, those images are traumatizing, no question.  But I understand now that time has passed that they are part of the whole of our lives together.  They'll always hurt and I will always cry when I remember, but now I also see the first time he smiled at me with love, his sweet eyes when he kissed me for the first time, and all the many years in between.  It's a long journey, but I now know it's possible.

12 hours ago, Kay2021 said:

I just couldn't tell him that because I was too afraid to lose him.

I understand this too.  I should have asked him sooner if he wanted to go home; I should not have encouraged him to fight so long.  He did it for me, for our girls, and for the people who love us.  And that caused him unnecessary pain.  One of the worst memories I have was about 1 week before he died.  It was the middle of the night at the hospital (I stayed as many nights as possible) and he was wide awake.  He'd been sleeping a lot during the day, but not at night.  I went over to see what I could do to help.  And then I asked him, "Honey, are you afraid to sleep at night because you are afraid you won't wake up?"  He said he was.  I felt so bad for him and 2 days later I finally stopped fighting against comfort care and asked him if he wanted to just go home (on hospice).  He said yes and it was as if a weight had lifted for him.  Not just because of being medicated mostly out of pain.  He wasn't on morphine as that doesn't work for him and makes him combative.  I don't remember what it was, but it helped him quite a bit.  It was I who couldn't handle seeing him body wind down; I was the one sobbing uncontrollably; I was the ones telling the doctors I couldn't take it and they needed to treat him (though I changed my mind on that for John's sake).  I questioned myself on everything.  Was I making the right choices?  Was I fighting hard enough for him?  Shouldn't I have done X, Y, or Z earlier or differently?  and on and on.

They fought the battle, but we live with the aftermath.  There's no way around that.

12 hours ago, Kay2021 said:

Now, I am feeling so guilty of not being able to save him from it. What if it wasn't his time to go?

...

And this guilt is killing me.

I wish I could offer you magic words or really any words that would truly help.  I'm sorry to say that all I can offer is my understanding.  My guilt over not saving John will likely never fully resolve.  But it is softer now and it doesn't consume my days and nights.

I suspect you know in your heart of hearts that there was nothing more you could do.  As much as I wish we'd planned hospice earlier, we didn't.  I authorized the switch to comfort care on Friday and he was due to come home on Monday.  But that's not what happened.  His organs started shutting down Sunday night, which is when they moved us to the private room with (I learned later this is a sign "someone is dying in this room") a rose and a coffee/tea/snack cart right outside the door.  I'm not sure I'll ever get over the fact that I didn't let him die at home.  But time has eased that guilt as well.  The nurses and CNAs that had taken such good care of him, of us, were so kind.  Several came in on their day off to quietly ask me if they could say goodbye.  I consider it quite a testament to who he was that they would stroke his forehead or arm and tell him that they were sorry and they would miss him.  Still, it nearly broke me to see the finality in their eyes and hear it in their words.  As if again, if I didn't admit it, then he couldn't possibly die.

I'm so sorry you are in the depths of grief and guilt right now.  I've been there and can only offer the hope that slowly, day by day and month by month, your guilt will ease.

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@foreverhis Thank you so very much for sharing your story. Your story certainly made me cry but at the same time gave me hope. It really meant so much to me. Your understanding and the hope is all I can ask for.

  "He'd been sleeping a lot during the day, but not at night.  I went over to see what I could do to help.  And then I asked him, "Honey, are you afraid to sleep at night because you are afraid you won't wake up?"  He said he was."  

This is so heart-breaking but I am glad that you asked that question at least. I have never asked that question but just always encouraged him to fight on, not really reading what was going on.

 ATM, I am certainly in the dark place where layers of guilt over not saving his life is truly overwhelming and consuming. Also, the anger towards the medical community is tremendous. "They fought the battle, but we live with the aftermath" This is so true. I am asking my husband for his forgiveness but I don't know if I am forgiven. (I can't have his answers, you know). But then, knowing him, he would forgive me with his loving smile. I almost see his angelic blue eyes welling up and holding his arms out for me. But it's just me that I can't forgive myself. But I hope this enormous burden of guilt will ease and be lifted a little in time just like you said. You have walked this difficult path before me so I trust you. 

"but now I also see the first time he smiled at me with love, his sweet eyes when he kissed me for the first time, and all the many years in between." 

I love that. I really hope that I will also be able to see my healthy husband with so many memories again. I almost feel like I have two husbands, one that's healthy and the other who's sick. All I am seeing now is the sick one. Over the Christmas holidays, I stayed at MIL's place and she had a photo of me and my husband's when we were young and happy a few days before our wedding. I thought to myself  'If someone had told me then that he was going to die in19 years, would I still have married him?". And my answer was hell yes. Every bit of our life together was so worth it, good and bad. 

"Several came in on their day off to quietly ask me if they could say goodbye.  I consider it quite a testament to who he was "

Of course, it was. So sorry for your loss of your wonderful husband and thank you for being here for me in my dark moments.

 

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1 hour ago, Kay2021 said:

But then, knowing him, he would forgive me with his loving smile. I almost see his angelic blue eyes welling up and holding his arms out for me. But it's just me that I can't forgive myself. But I hope this enormous burden of guilt will ease and be lifted a little in time just like you said. You have walked this difficult path before me so I trust you. 

I so understand this.  Although we can't "know" because they can't tell us right now, my heart tells me that John has forgiven me because he would, he simply would.  We forgave each other for our flaws and faults for 35 years, so why wouldn't he forgive me now, especially when I have faith that he is in a wonderful place and reunited with our two most special fur family?  One of the very last things I said to him, after telling him I love him for the millionth time, was, "Love, it's time for you to go find Charlie and Penny."  They are our Keeshond and red tabby Persian, our soulmates in animals if you will.  We got them only 2 months apart and as puppy and kitten.  For whatever reason, they were just that much more special than any other pets.  We loved all the animals in our lives, but those two were waiting for him at the Rainbow Bridge.  I just know it.  I could almost swear that after I said that to him, his body eased and his breathing started to slow.  Some people say we shouldn't tell our loves that "It's okay to go" because they might think we are saying we want them to leave us.  I disagree.  I think that John needed to hear our daughter's voice.  Our girls had just visited 2 weeks before and couldn't get back here in time.  I put her on speaker and she talked to him.  I know he heard her and I think it helped him.  And I can't help but wonder if he had already forgiven even before he left us.  He couldn't talk at the very end, so I can only hope it is true.

You are right on that it's we who can't forgive ourselves.  I think in large part, for me at least, it's because I remind myself that I am the one left here, so I am the one to blame.  We ask ourselves over and over what we could or should have done to save them.  But eventually I came to remember that I am a fallible human and not omnipotent.

It's a long and painful road.  I won't "sugarcoat" it or lie.  There's no way around it.  When I started this path I was certain, absolutely 100%, that I'd never feel differently, that the crushing and overwhelming grief, pain, and guilt would never ease.  I was positive I'd never find joy in anything again.  I told myself that I didn't deserve to because I hadn't saved him.  Little by little with ups, downs, and even u-turns, I started to inch my way forward.  And every baby step helped.  I hope and believe that it will happen for you too because you are here and you are talking to people who "get it" in ways that others cannot.

For now, just keep breathing and allow your grief to simply "be" however it is.  You will probably start to have days where it's not so hard to breathe and you can see tiny pinpoints of light and hope.  That's what happened to me.  After a time, I was able to start reaching for them.  That's how it started for me.  It was tiny things, not some big revelation.  I still have bad days and I'm sure I always will, but now I have better days too.  You'll get there at your own pace and in your own time.  Just take each day and each little step as they come.  It's the only way forward that I've found.

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11 hours ago, Kay2021 said:

I am trying to draw comfort that at least he is pain-free now.

This is the one consolation I have about George's death, the "so called silver lining, if you will..." that he was spared so much suffering and disability, I know he would not have liked it, he wouldn't have been able to work if he'd lived, and although I tried to console him with thoughts of fishing with his friend, I know it still would have bothered him greatly.  So although I long for him and wished he'd lived and we'd be together and have each other, at least HE is spared, if not me.  

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10 hours ago, foreverhis said:
  22 hours ago, Kay2021 said:

I just couldn't tell him that because I was too afraid to lose him.

I remember crying out, "HOLD ON!!"  twice, and both times he shook his head, the pain was too great.  I would have then told him it was okay, I'd be alright, but I didn't get to because the nurse threw me out and locked the door behind me, I never saw him alive again.  I know we're not supposed to hate anyone, we're required to forgive, but...it's hard with the ice queen.  Nurses should have more compassion than that.  She didn't know him, I was his Little One and we were deprived of being together at the moment he most needed me.  I've tried to console myself with the thought that perhaps it made his leaving easier as he could focus on what HE was going through instead of worrying about me.  But...

8 hours ago, Kay2021 said:

'If someone had told me then that he was going to die in19 years, would I still have married him?". And my answer was hell yes.

And if someone would have told me he would die 3 years and 8 months after we married, I would have done the same, in a heartbeat.  

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6 hours ago, foreverhis said:

We forgave each other for our flaws and faults for 35 years, so why wouldn't he forgive me now,

It would be forgiven already, instantly, it was just a given.

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  Thank you @foreverhis. I will try to keep breathing for now in the hope of "tiny pinpoints of light and hope" . 

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@KayC  "I didn't get to because the nurse threw me out and locked the door behind me, I never saw him alive again.  I know we're not supposed to hate anyone, we're required to forgive, but...it's hard with the ice queen.  Nurses should have more compassion than that.  She didn't know him, I was his Little One and we were deprived of being together at the moment he most needed me."  

That nurse was so heartless and the situation was so heart-breaking!  ATM, I myself am very angry and disappointed with the whole medical industry. I thought we were far advanced in the modern medicine. But in reality they can offer very little for our health/treatments. I am skeptical about everything. If I had experience with this sort of thing I would've handled the whole situation very differently. It's a shame that I learn these things through my beloved husband's death. 

I know that it's too late but I just wanted to have him with me a little bit longer. I am in despair, guilt and anger so it's very hard to hold onto that "silver lining". But maybe it's only way.

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On 1/11/2022 at 8:31 PM, Kay2021 said:

I thought to myself  'If someone had told me then that he was going to die in19 years, would I still have married him?". And my answer was hell yes. Every bit of our life together was so worth it, good and bad. 

Absolutely and without question, yes.

We almost did lose him many years before when our daughter was young. He was in a terrible bicycling accident. I was riding right behind him and it was just like I had heard about seeing things in slow motion.

We were in a bike lane in perfect weather and wearing proper gear. His front tire hit a piece of loose asphalt. It went one way and he went the other, rolling head first over a 90 degree curb. He suffered permanent and serious injuries to his upper body. His helmet saved his life, though he had a mild TBI and optic nerve damage. Ironically, we were riding back from buying me a new helmet because the local shop didn’t have one small enough for my little head. 

When the doctors told me flat out that he would have died except for the helmet, my heart crumbled and my mind realized that I couldn’t fathom that. How could I be so connected to one man that the mere thought of him dying made me feel dead inside myself?

So when he did die so many years later on the anniversary of his accident (weird, isn’t it?), my mind went back to that day too. But I knew that I would have been with him body, heart, and soul no matter how much pain I had to live with now. He was far from perfect, as I am far from perfect, but he was my soulmate and worth everything.

It is a small consolation to know that he is in the place that lies beyond what our limited human minds can understand. I have faith that he is young and strong and healthy again. I believe that he is with our sweet Charlie and Penny and that they were waiting to welcome him “home.” I try to keep that in mind on my bad days. 

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I feel the same debilitating guilt. My husband died from covid. If he died in a car wreck, or had a heart attack, or cancer I would blame myself. I too wished I could've been stronger a fought the hospital more for him, for sake I couldn't even be with him because the hospital chose to not let me in the room, even dragged me away when he was dying. How inhumane we have become in face of fear. I hope that you know you are not alone and I am sorry for your loss.

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@Sheemie  Thank you for letting me know that I am not alone in this. It's so hard to feel this insurmountable guilt on top of grief. I am really struggling to get out of this guilt. No matter how hard I am trying to get out, I seem to just live in it.  I read your story and I feel your pain. I am so sorry for your loss.

My husband got vaccinated with Covid even though he was sick with chemo. After the second vaccination, he just slept for 3 days. Now that he's gone, I feel like what was all that about.  I feel like his weak body had to endure another kind of "poison", so to speak, for nothing. 

It's so unfortunate that we had to lose our loved ones this way at this point but I am trying very, very hard to convince myself that life is always in the hands of God. Maybe that's something we just can't interfere with no matter what. 

 

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Death is tragic grief is traumatic to us.

My poor husband did not get vaccinated because we were scared of it. The first thing I said was my God it's my fault because I didn't make him get vaccinated and hospital said don't worry we have seen plenty of people in hospital who got vaccinated and still end up here. It's terrible guilt u feel like criminal if your not vaccinated in hospital and they should not be making sick and dying feel like it's their fault that's so wrong. I wish so many things constantly that could've changed our fate so he would be here today. I always tried to save my husband and we had so many wishes, plans, and future left to live. I wonder every day how to go on without my life. He was my life.

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1 hour ago, Kay2021 said:

@Sheemie I know. He was my life too. 

Ditto, miss my soulmate beyond anything. How could this be and how to navigate and for what? Thanks for listening - I find most people/family outside don’t want to hear...

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@Ken57 Thank you for sharing. I hear you. Nobody quite understands. But even if they do, my love doesn't come back...I keep going back to his last moments and desperately want to bring him back. What I am going through now is truly beyond description. So heavy-hearted and so broken. Every inch of this house reminds me of him. There's no escape.

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9 hours ago, Sheemie said:

we have seen plenty of people in hospital who got vaccinated and still end up here.

For sure.  My church had an outbreak in October, had to close for the month.  Of 23 people I knew who had Covid (most in the church), 8 were not vaccinated, the rest were.  So you see, there are breakthrough cases.  In the end, we do our best but it seems life has a mind of its own.

You can't "make" someone anything.  I felt the same feelings when George died (heart/diabetic).  He was barely 51, it was totally unexpected.  I'd suggested he see a different doctor, but he didn't.  It wasn't my place to "make him,"  he was a grown adult and made his own decisions.  This one happened to be costly as his doctor knew his family had heart problems and he'd been complaining to him of tightness of chest, he had indigestions, his ankles hurt, had a hard time breathing, his doctor just said to quit smoking, he'd cut back 90%, he still died.  His doctor should have referred him to a cardiologist.  

Should I then beat myself up the rest of my life and accept responsibility for his death?  Sometimes we can see in another's situation, "NO!!"  But in our own, it's harder.  We're wishing so hard for a different outcome as this one is too hard to accept.

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I agree and sympathize...I was forced out of our home by family to be closer to them and maybe it was better because maybe staying would've been more painful...I find pain follows so it doesn't matter. The only time I feel ok is when I'm doing something I feel halfway normal. Or else I'm just crying and alone and sad. I lost alot of will and I don't know how or if I can get it back. I find total strangers are more helpful than my own family and I don't have friends that are close to me. I wonder how I lived b4 my husband. I had a routine of work, school. but I didn't know how miserable I was until my husband took care of me and loved me because no one did b4 and that's what's so hard going back to a life that just uses me and doesn't care at all about me.

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22 hours ago, Sheemie said:

I wonder how I lived b4 my husband.

It's different then because we didn't know what we were missing, it was all we ever knew.  Once we have "the one" it's huge to have to do w/o them again.  We do get used to this in time but it's never the same and we fully know what we're missing...

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I agree it is so hard I ask myself how did I live b4...I don't know...I had a routine that was my life but it was no life. He gave my life purpose. 

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