31 March 2011

Past

I'm in the past a lot these days. Some people I know through the Internet—I like to think of them as friends; I hope they feel the same way—have ill spouses who are approaching end of life, and reading about their experiences and thoughts takes me back with startling clarity to the last few months of John's.

I'm not going to look back on what I wrote then; I have a feeling that I was overly optimistic and measured in my tone. But I have been honest with these women who are staring down the barrel of the gun, albeit a gun pointed at someone other than themselves. And so I shall be honest here.

I remember the day—the very day!—that I understood that John's death was on the horizon. It turns out the horizon was further away than I thought; he died four months after this day I recall. But it was on that day, the day I knew John was done fighting (and I say that with no judgment about his decision) and the day he had truly accepted what was to come, that my emotions changed, too. It was on that day that I started to fervently wish that he would just die right then.

Yes, I thought that. It sounds awful, but I did. And I then went on to be at times full of rage that it took him four long months to go.

Of course I wanted him to live longer, but not when he was a shell: exhausted, ravaged by disease and medication and side effects, uncomfortable, restless, unhappy, disengaged from life. He was done, and I was done.

There's not a lot of room in the culture I grew up in to accept death, especially a death not your own. I used to get so mad at people who put pressure on John to fight harder, fight longer, not to "give up." And yet, what I said to John back then was, "I love you. I need you. Stay with us." Yes, part of me felt that way. But the bigger part of me said that because I felt I was supposed to.

I wish I had had the courage to say this instead: "I love you. It's OK. I'll be OK. We'll be OK. You can go now." Because by the time I did say that, I'm not sure John could even hear me.

26 comments:

Keith said...

I wonder sometimes whether it matters what we say. It seems to me that what matters more is that we're there and don't keep quiet.

So with that in mind, I'm commenting when I really have no idea what to say. The honesty in this post is beyond any response I can give.

Anonymous said...

I had to take a baby off a ventilator and I wonder the opposite; if I left her with the impression I didn't fight or something. I don't know if you can win either way.

postwriter said...

Hearing is the last thing to go. I would bet he heard you. And it was a good thing to say, no matter when you felt like you could say it. Jill

Nambi said...

I don't want to sound like a cliche douchebag, but it's very brave of you to admit to these feelings. I've never been in your exact position, but if I ever am, I am sure I will feel the same way. After all, if there's absolutely nothing left to do, then...there's just nothing left to do with life, right?

Angie in Texas said...

i think it's too easy to categorize and put things into an order of events: first you will feel ___, then you will feel ___and after that you will feel ____. instead the human experience is to feel all, none or some of ____.

even if you didn't say it out loud, he heard you clearly.

~A said...

The hospice nurse that visited us the day Anthony died whispered to him that it was okay to go. And he did a few hours later. I wish I had had the courage to articulate that earlier. Those last few weeks were hell.

As always, Snick, I have nothing but love and admiration for you. I also appreciate your continuing to write about this as you work through things. Few others understand, and it helps me immensely in my own processing to know that I'm not the only person that, years later, is still replaying scenes from that horror movie.

SMx said...

I agree with the folks above about him hearing...

I vividly remember the conversation I had with my brother the night before he died. On his rougher days when he wasn't up for much conversation I would tell him no worries I will call you tomorrow. On that night though he said, "No, stay on the phone, I can still listen..." And that was our final conversation.

beyond said...

i think he heard you.

Anonymous said...

Even though I have read all your posts, it never hit me until right now that I was going through the same stages of grief. It does not make me feel any better that I am not alone in this, but at least now I know that I am not a freak of nature. You see, the last time I saw my sister I was ANGRY at her for not dying quicker. Just as you with John, it wasn't that I wanted her to die, it was that we all knew it was just a matter of days, or at most weeks, and what she was doing was not really living.

For three years now, I have been so ashamed of that feeling and more ashamed for having told my adult son.

Lals said...

Snick,

Your post is heart-achingly beautiful and honest. Having walked the final journey with a few friends (though never a spouse), I understand what you're saying. I've never had the courage or the words to articulate it as well as you did, though.

((hugs))

P. Gardiner said...

When my grandmother was dying she wanted to make sure her taxes were paid (when she was coherent). After she was told they were in the mail & she could let go she did, dying just a few hours later. I heard a lot of stories like that when I worked in hospice too, waiting until someone left the room, or arrived from out of town, etc.

christine said...

I don't think I can say it better than Keith did. Thank you for putting this out there for your friends, for those who might otherwise find it and find some recognition in the emotion. See a bit of themselves here and feel, not "better", but normal.

Hugs to you.

kathy a. said...

oh, snickollet. what everyone said. i'm glad you are still writing about it.

it was just the 9th anniversary of my nephew dying of brain cancer. you know how things come up on anniversaries.

he had been ill almost 3 years, in hospice for almost 2 months. he had been in a coma for almost a week. i didn't say out loud what i was thinking -- it's OK, you can go -- but his mom felt that, and she was so very angry with me that day.

OTRgirl said...

Once my Mom lost consciousness, each day was really, really hard, but that phase was less than a week. We'd all told her she could go, but it wasn't until five days later that her Mom and a couple of her sisters arrived. Her Mom came in to say hello and goodbye and then my Mom slipped away that afternoon.

That said, I was only there for the last two weeks. I'll have to ask my sister if she got angry. She was 20 years old and became my Mom's caretaker that summer.

With my FIL, the medical 'help' at the hospital meant that even though we took him off the vent, it took 9 days. They kept suctioning the trach tube and it wasn't until my husband asked them to leave it alone for 24 hours that his body's process could allow death.

I really wish we had a better framework in our culture(s) for dying. Even when Dad K was literally on his deathbed, the pastor was urging us to pray hard and trust he was getting better.

We're so scared of anger and then even more scared of death.

As always, thank you for your honesty.

Yankee, Transferred said...

Snick, I look back on this time as if it were yesterday. I think of you so often. Much more (shame on me) than I stop by to say.
YT

Celeste said...

Thank you -for both your email & this timely post today. My husband is very I'll, and my cheerleader inlaws are driving me bananas. He has gotten terribly I'll in six short days, and although I need him and desperately want him here for our kids -I told him tonight that I understand if that's too hard. However, as he's intimated and sedated, I have no way to know what he hears.

Anonymous said...

Thank you for sharing this, and thank you also to all the commenters who are sharing their experiences also.

I hope you, Stacey, and everyone who's looking back at the experience of being with a loved one as they approached death can be easy with themselves. 20/20 hindsight is just that - hindsight. If you'd done or said something differently, you might have a completely different set of regrets, KWIM?

As always, Stacey, I'm so impressed by your grace, and your writing. Thanks again.

Shelley

Alayna said...

You have such a gift for expressing these things in writing, and putting this out there was not only brave but sure to help others either now or down the road.

I've never been in the position of losing a spouse, but I hope you don't judge yourself too much for any feelings you had during the process. You were in the very thick of it and you were doing the very best you could, and that is all that anyone could ask.

I also think that, deep down, he probably heard you when you told him it was okay to go, whether it was through his ears or at some deeper level. (hugs)

Anonymous said...

When my beloved grandfather died I had piles of guilt about my behavior and the things I wished I had said. To this day (20 years later) I'm jealous of my brother who sat down with him while he was still alert and said - I'm ok with you dying.

carolyn said...

When I found you I did go back and read most if not all of those posts. The thing is, we don't ever know when the end is going to be. We don't want to give up too soon or hold on too late. Not a lot of space in the middle there, for the one dying or the ones left behind. We are all doing the best we can with what we have.

Anonymous said...

Watching a beloved person suffer pain is very hard. There is no perfect time to say anything.
I kept talking to my sister even after she was heavily ventilated, sedated, and dying. I don't know if she heard, but it brought me comfort.

Supa Dupa Fresh said...

I didn't reach that day until 2 or 3 days before he left. I wish I'd gotten there earlier. Coping with the prior few months when I *sort of* knew -- is still a big preoccupation of mine. How did I do it? I don't know, and I read your posts from the analagous period trying to catch a glimpse.

So, FWIW, I remember reading your posts - vividly -- and I do not think you were off kilter in any way -- maybe optimistic, maybe measured, but not extreme. I think I was, though.

Love to you and the kids.

X

Supa

Jennifer said...

I wanted my dad to die years before he actually did. Vegetable in a bed is no life. I especially wanted him to die on his own before insurance kicked him out of the hospital and we had to fund a nursing home all by ourselves ($48k for month one, $2k every month thereafter). I especially wanted him to die on his own without having to have my mother decide to pull the plug, because I didn't think she ever would and she clings like hell. Eventually after paying the $48k, she gave in. But yeah, I know how you feel.coi

Terri said...

What an incredibly honest post. Thank you for sharing your honest thoughts. I think many feel the way you did, they just feel guilty admitting it, and I'm sure it helps them to "hear" someone else actually "say" it.

kyouell said...

You are a lovely human being to put this out there for others to find. I'm sorry to have stopped reading for awhile, but it was all blogs not just yours. Nothing personal just my life happening; nothing bad just lack of minutes in the day.

You take care & I'll keep reading.

Kim said...

I linked to this post on my blog about 2011 posts that moved me... FYI. Have a good 2012.