The Death I Should Have Let Happen

[HAP]

Dear friends,

I posted a version of this on the walkingwithjane.org website earlier today, but I think it says something people here wrestle with as well.

Today is the day I should have let Jane die four years ago. Death that day would have been, in retrospect, better for her. It might have been better for me. But it would not have been better for our knowledge of carcinoid/NETs. It would not have been better for those who took life-lessons from her struggle. It would, arguably, not have been better for patients.

The weekend before had been difficult. Jane had suffered from massive diarrhea as the food she was finally able to eat passed through her almost as quickly as she could eat it. I helped change her gown and the filth laden sheets after nearly every episode--though twice I had gone down to the cafeteria for food for myself and found myself locked out while they cleaned her up.

She also lost her mind for long stretches of that weekend. She asked me to eat my meals in the room because, she said, she thought the doctors and nurses were trying to kill her. She lied about her physical therapy and said her doctors had told her not to do it--that she didn't have to. She was angry and terrified and, sometimes, a complete stranger to me. There were times I was not sure she knew who I was.

One of her doctors told me she was suffering from what they called ICU psychosis--a thing that is not uncommon among patients who are trying to shake off the lingering effects of the sedatives used during extended surgeries and begin feeling trapped in a small bed. Certainly, that was possibly part of what was going on. I know I was terrified and working hard to keep it out of my face and out of my voice.

I was up with her much of Sunday night into Monday morning and she seemed to be calming down. I held her hand and talked soothingly to her until the day nurse came on at 7 a.m. I went out in the hall to tell her what the weekend had been like. She said she thought the idea of ICU psychosis might be wrong--and that I should be prepared for the possibility Jane might not make it. She saw a marked deterioration in Jane since Friday.

That this might well be the end had been in my mind all weekend. I knew diarrhea like she was having could not be sustained for long. I knew her blood pressure and respiration were fluctuating wildly. I told the nurse I would not sit in on rounds that morning--that I would stay with Jane instead. It was my habit to listen to the reports on Jane each morning and to understand the plan for the day in the week since her surgery. I felt like I was more a part of the team that way.

I went back into the room. Jane was sleeping. I took her hand. She opened her eyes and looked at me, then closed them again and focussed on her breathing. I breathed with her. "Breathe with me and stay with me," I repeated over and over in time with her breathing. I was dimly aware of the doctors, nurses and medical students talking in the hallway.

"Breathe with me and stay with me," I chanted. The medical group moved down the hall to the next patient. "Breathe with me and stay with me." Then her breathing caught and stuttered. I should have just continued to hold her hand. I should have said nothing and done nothing and let her slip away just after 9 a.m that Monday morning.

But I didn't. In a calm, un-panicked voice I called into the hallway. "Something isn't right here."

Then the room was filled with doctors and nurses and they were pushing me behind a curtain so I couldn't see what was going on. I hated that--but then the hospitalist was there asking about intubating her again. He said that would buy them a little time to figure out what was going on--and if they couldn't fix it, they could always take it out again.

"Give it a few hours," he said.

"A fighting chance," I asked?

"A fighting chance."

'The moment it isn't, you'll tell me and we'll end this?"

"The moment it isn't, I promise."

We pulled her back from the edge of death. She spent 33 hours in a coma before the steady drip of octreotide brought her back to consciousness at 6 p.m. Tuesday night.

You think about a lot of things when the person you love most is unconscious and you don't know if they will ever wake up again--or what they'll be like if they do. I sat by her bed. I held her hand. I talked to her. I watched the news with her. I sang to her. Somewhere in there I slept a little, I think. I know they sent me off to eat a couple of times. The memories are fuzzy.

I never stopped believing she was coming back. I never stopped believing she was going to heal. I never stopped believing she would beat her cancer and all the damage it was causing. But Death was in the room with us--and I knew it. And I should have let her go with him--no matter how much it changed the future.

But I didn't. I didn't know what I didn't know. And the world is a different place because of that.

Peace,

Harry

[kayc]

George's last day in this world, I was sitting by his bed, holding his hand and stroking it while he slept. He woke up having a heart attack, his eyes frantic. I ran for the nurses station across the hall, they yelled code something and it was hustle bustle after that, doctors and nurses scrambling around him. he was in acute distress, his eyes as big as saucers. He couldn't talk. This is the way he always said he DIDN'T want to go...you'd think he'd pick cancer or something lingering as a way not to go, but it was heart...he'd seen so many people die of heart attacks, he didn't want to go that way, it scared him. I could tell I could lose him, I frantically hollered at him to hold on, and he shook his head no. I yelled at him again to hold on, again, he shook his head no. I wanted in that moment to tell him it was okay, to stand next to him and be there for him as he was ushered in to his next life, but that wasn't allotted me, the nurse at that very moment threw me off the ward and locked the door behind me. I remember crying that I was his Little One (as he always called me), that they wouldn't even know he was having a heart attack if it wasn't for me...it didn't matter, there was no one there to hear me, as he died alone...alone with all the doctors and nurses shocking him and trying heroic efforts to save him. Perhaps I should have said nothing and let him go, peacefully, in his hospital bed, while I was there with him. In retrospect, it would have been easier on both of us. But I wanted to save him, wanted him to live, couldn't even imagine living without him! And had I chose that, I always would have wondered, what if they could have saved him. No, I did the right thing with the knowledge I had at the time. We have to try. I'm sorry he went the way he never wanted to. I'm furious still that they threw me out. Perhaps it was to spare me the visual of what they were doing to him, but I cared not about any of that, I wanted only to be by his side, to be there for him in his hardest moment, the way he was always there for me in mine. We were inseparable. Why was it then that we had to be apart when he died? Why did he have to go through his ordeal alone? Why could I not be there to tell him it was okay, I'd be okay, to relieve his mind of worrying about me, to bring him peace.

I don't know, Harry, we always think about those final days, everything that leads up to it, everything that comes after, what we should have done, should have said, we rehash it and rehash it, and in the end, it doesn't make any difference, doesn't change a thing. It's just it's one of those life altering moments, that stay with us for life.

To George and to Jane, that is all history, to them, they are now at peace...it is to us it tugs at us and never leaves us.

I'm sorry you're thinking about this. At least you can say it helped others somehow...for George it seemed fruitless. I guess that's why you give your dying breaths to make it count, to help those that come down with NETS. To me you're a hero. I'm not a hero, I'm just an ordinary person that misses my not-so-ordinary husband.

[marsha]

You both are bringing me to tears. Ah, G-d - to have to make those decisions...and then to live with it and worse, second guess myself. I've made peace with it, mostly, but then sometimes...

[enna]

I read your piece on walkingwithjane.org, Harry. Oh, the things we remember that are forever etched in our brains. Thank you for sharing it here so that others can read yet another's journey in grief. One thing is for sure and that is so many of us know about NET cancer now because of your passion to educate.

Anne

[LarrysGirl]

it takes me back to several moments in Larry's illness, when you second guess yourself, did I prolong his suffering, I pray not.

[kayc]

Oh Deborah, I doubt it. I know we always second guess it all, but in the end we have to accept we all did the best we knew with the information we had at the time.

[Tableforone]

Such a heart wrenching topic. I truly believe that regardless of what we do, we question it - agonize over it. In our minds, we have never done enough. I have had to make the decision to allow someone to move on more than once. Each time was a different circumstance, but ultimately I really tried to focus on what was best for that person. Not best for me. Even so.... you question it. Should I have done it before? Could more have been done? When is the right time to "give up"? Do we ever until its taken out of our hands? There are no wrong answers. Only what you feel is right at the time.

The times that are urgent...such as KayC's... you have no real control over your thoughts.... or actions... you're just desperate for the most part. Wanting one more minute even. Circumstances dictate that you can't think past the all encompassing need to save this person you love so much. When the love of my life passed on - I would have done absolutely anything to have kept him. And if I'm honest with myself, even if it had not been what was truly best for him. Then I would have had to come to terms with what I had done.

Ultimately, we can't continue to beat ourselves up (although I do constantly) because the choice really wasn't ours'. We didn't chose for our loved ones to be stricken with whatever resulted in their deaths or lingering conditions. We did and do the best we can at the time. We do what we do out of Love. There are no wrong choices when they're made in love. Only different paths to walk, with different but similar heartache and sadness.

[Wifflesnook]

This is such a hard topic. Whatever the circumstances of our loved ones last days (and I wasn't with Pete but was with our daughter giving birth) we will for ever beat ourselves up about it. We have to forgive ourselves. It's so clear that we all loved our beloved ones more than our own lives. And they too reciprocated. I'm glad I'm the one bearing the burden. I'm glad my Pete didn't have to live without me. I Know that his death in whatever circumstances would be unbearable for me. I hope he knows that I did everything I could in the circumstances, given that we don't have hindsight.

[HAP]

Dear friends,

Thank you all for your kind words and for sharing your stories of what you went through.

I am finding this fourth fall since Jane's death particularly difficult. Part of that, I suspect, begins with the request I got last summer about how Jane and I prepared each other for her death. It reopened a lot of things I'd thought I'd found my way to accepting. Part of it is that after four years I'm beginning to accept that this new normal looks nothing like the old normal and is never going to.

And part of it is that I am so tired of grief, so tired of illness and death going on around me in a ceaseless parade. I've always hated wakes and funerals. I find myself at too many of them now with no way to escape. They have become a steady drumbeat that drowns out too much of the joy I know is out there somewhere.

I wrote a new piece today about our last Thanksgiving and my hope that in the season ahead I will be able again to find the joy that once existed in this time of year for me. I'm tired of going through the motions during these holidays. It is time I started reclaiming these days for something beyond the ongoing pain of loss.

Peace,

Harry

[kayc]

Jan, good point, we could use the reminder!

Harry, I guess that's why I decorate for the seasons, put up a Christmas tree, etc. It's kind of like stepping out in faith, doing those things for ME because I know I'm valuable enough to do those things for, me alone, separate and apart from being part of a couple...I am worth it. It may not FEEL the same as it did when shared, but I can still enjoy a Christmas tree, a good meal, some music, a sunset, watching it snow, etc. so I need to do those things for ME.

[JeL]

Harry, thank you for your literary skill in this post and others you've written. This eve of Thanksgiving, I wish us all peace in our hearts.

This week, I'm finding comfort (and tears) thinking that the depth of my loss is proportional to the height of our love.