Thursday, March 19, 2009

Clearing the Decks


Thanks so much for all the comments on my previous post! I really appreciate everyone's ideas and support.

I was with Dad today when the doctor came in and told him he had about a month to live. Dad seemed stunned, but quickly opted for hospice once he realized that the alternative was bouncing back and forth between the ICU and nursing homes. "Let me die," he said. "I'm tired."

Having made that decision, he acted on it with characteristic directness: promptly (and somewhat gleefully) dismissed all his rehab therapists, announced that he didn't want to eat anymore because his throat hurts too much -- that part freaked me out, I must say -- and demanded that I bring him wine, if not a martini.

I went through a cyclone of emotions: relief, followed by guilt at my relief, followed by grief, followed by numbness. I've settled back into relief, though, more or less. I've also cleared my own schedule so I can spend more time with Dad: my priorities right now are him, my job, and my own health. I was supposed to preach this Sunday, but got someone to cover for me (I'm not even sure I'll be going to church), and I also e-mailed my volunteer coordinators at the hospital to let them know that I'm taking yet another leave of absence.

This afternoon I went for a walk; after dinner, I went back to Dad's, bringing a small container (an empty spice jar) of wine and a comfortable lawn chair for myself, since the nursing-home chairs have been killing my back. It turned out that the doctor -- who hadn't stopped back to talk to us after dropping his bombshell; I know he's busy, but I find that a bit annoying -- had dutifully written a prescription for Dad to have four ounces of wine in the evening. The spice jar holds four ounces, so that worked out fine. The doctor had also written a referral to hospice (we're going with the one we met with yesterday, but will switch if we aren't happy). They'll presumably come on board sometime between tomorrow and Monday.

Dad and I had a nice visit. He was awake and coherent. He'd refused dinner, but I got him to eat a few spoonfuls of a nutritionally-fortified orange sherbet, in addition to the wine. Any food now makes him cough and choke terribly, and I can understand why he's reluctant to eat. But we had a good talk about all kinds of things: music, how hospice works, his current physical and emotional condition. He was worried that taking care of him would interfere with my job, and I found that touching.

My sister had asked me for some photos of him, so she'd feel more connected, and I'd taken some earlier in the day. Then I got the bright idea of taking a short video so Dad could say hi and tell Liz he loves her. She e-mailed me that she really liked the video, so Dad and I are going to try to send her one every day. I don't know how long that will last, especially if he's not eating, but it's a nice goal.

When we were talking about music, he told me about a Paul McCartney song he likes, "The End of the End," and asked me to look for the lyrics on the internet. (Hurrah for BlackBerry!) When I found the lyrics, the chaplain in me perked right up, as you'll understand the second you read them:

At the end of the end
It's the start of a journey
To a much better place
And this wasn't bad
So a much better place
Would have to be special
No need to be sad

On the day that I die I'd like jokes to be told
And stories of old to be rolled out like carpets
That children have played on
And laid on while listening to stories of old

At the end of the end
It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry

[Whistling]

On the day that I die I'd like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on
And laid on while listening to songs that were sung

At the end of the end
It's the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry
No need to be sad
At the end of the end

I read Dad the lyrics. He said he doesn't believe in the better place -- he doesn't believe he's going anywhere -- but he likes the parts about jokes and stories and songs, and about how there's no reason to be sad. As long as I can remember, he's told us not to be sad when he dies; he wants us to have a party instead. I told him that Liz and I are sad anyway, because we love him and we'll miss him.

We also teased each other. When I told him that I wasn't preaching this weekend, or maybe even going to church, I said, "See, Dad, aren't you happy about that? You got me to stop going to church! It worked!"

He smiled, and later, when I asked him if he had any regrets aside from not sailing around the world, he sighed and said, "Having two daughters! How do you undo that?"

"I dunno, Dad. That's a tough one. You'd need a time machine."

We held hands a fair amount (when I wasn't wiping wine dribbles off his face), and I left after the nurse gave him his evening meds, which included a sleeping pill.

So, all in all, not a bad day. We'll see what tomorrow brings.

7 comments:

  1. Anonymous2:11 AM

    I'm so sorry -- but I'm not. Your words that:

    "At the end of the end
    It's the start of a journey
    To a much better place
    And a much better place
    Would have to be special
    No reason to cry
    No need to be sad
    At the end of the end"

    really touched me. You see, I've been fighting with potential death (a lousy immune system) since I was a pre-teen (but post-pubescent, which led to years of misdiagnosis). For more than thirty years, I've been trying to live in the midst of death, and trying to help loved ones who can't accept my acceptance.

    God's plans truly dwarf human understanding. If I had been as healthy all those years as I was as a child, I would never have put away childish things. I have developed compassion for the sick by being one of them; love for the loveless by knowing how precious it is to be loved when I am not lovely. Your dad may not know how to articulate what he has learned through his ordeal anymore, but take faith that God has the power to work past our ability to form "eloquent" words and know He can, and does, work miracles throughout our lives.

    I know he has done so in your father's life -- or you would not be you.

    So take ease in your father's acceptance. Oftentimes, it's accepting God's will that's the difference between living in pain and living in Grace.

    God bless all that is you and yours.

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  2. Susan, I'm both sorry and relieved for you and Alan. Prayers will continue and I hope you two have a good time together in the days that remain. May you make some wonderful memories!

    Hugs!
    Lee

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  3. Sorry and relieved about says it... the loss is terrible for you, but he's going with grace and courage. My grandfather passed away last year from esophageal cancer: when they saw how advanced it was, he stopped eating and refused to go to the hospital. I'm sure they could have kept him alive on life-support for a couple weeks longer, but what for? E-hugs to you both, and prayers as well.

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  4. I'm carrying you all in my heart.

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  5. I am both sorry and relived as well. Unfortunately I am leaving town for a couple weeks tomorrow, but if you want/need anything when I get back, please let me know. Hugs and prayers.

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  6. All my love to you and your Dad. May he enjoy his wine, his music, and holding hands. Please, if you can--move "your health" up a little higher. Work can usually flex more than we think it can when things are this intense. If it's ok with you, give your Dad a little hug and kiss for me and keep big ones for yourself and Gary... Prayers ascending...

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  7. Susan, are you aware of the idea of "ethical wills?"

    I just thought that that may be a project your dad might enjoy doing -- you could tape it, and he could add things as he has energy for it. Obviously I don't know him except through your writing, but he seems like the kind of person who would appreciate being able to share that kind of legacy with you and your sister.

    From http://www.ethicalwill.com/ :

    "Ethical wills are a way to share your values, blessings, life's lessons, hopes and dreams for the future, love, and forgiveness with your family, friends, and community.

    Ethical wills are not new. The Hebrew Bible first described ethical wills 3000 years ago (Genesis Ch. 49). References to this tradition are also found in the Christian Bible (John Ch. 15-18) and in other cultures. Initially, ethical wills were transmitted orally. Over time, they evolved into written documents. 'Ethical wills' are not considered legal documents as compared to 'living wills' and your 'last will and testament' which are legal documents.

    Today, ethical wills are being written by people at turning points and transitions in their lives and when facing challenging life situations. They are usually shared with family and community while the writer is still alive.

    Ethical wills may be one of the most cherished and meaningful gifts you can leave to your family and community"

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