Journaling Love and Death

I received a gift today from my dad. He's taking a writing class from a woman who journaled her mother's battle with ovarian cancer, from diagnosis to death -- just like I'd done with my own mother's journey with the same illness. Difference being, of course, that her journal became a book and mine still sits in my lavender "Omi box," a gift from Mom's Hospice worker.

Fayegail Bisaccia, the author of Dancing in My Mother's Slippers signed her book for me at my dad's request and I can hardly wait to read it! Just flipping through the pages, I know that many of our experiences through the love and grief of a mother's death are similar -- and even before opening the book past Fayegail's note to me ("For Carol, who has walked a similar path"), I felt a kinship with her and I can hardly wait until I can delve into the pages during my business trip to Santa Cruz next week.

Omi's box has been sitting on my dresser since the day I came home after Mom's death. I just can't move it from my dresser. I rarely open the silk ties on the box, but tonight I did. When you untie the two flaps, they open out to display pictures of me with Mom -- one when I was about 11 and one taken just a few days before her death. Also contained in the box are pictures of the immediate and extended family at Mom's memorial, Mom's obituary in the newspaper, the program from her memorial, and a journal, written TO Mom (until, interestingly, she began to slip away; that's when I wrote "her" instead of "you"), in which I chronicled her last four years.

In April, 2001, as Mom lay in a hospital bed in Portland, Oregon recuperating from a long surgery to remove her cancer-ridden ovaries, I bought the spiral-bound notebook that became my vehicle for writing to and about Mom. On the front of the bright red notebook is an embossed tea kettle with the words "A woman is like a tea bag: you never know how strong she is until she gets in hot water." There seemed to be plenty of pages in the book for me to record Mom's journey and my feelings about it, but four years almost to the day after I bought the book, as Mom lay dying, sharing -- with great effort -- her last few words with us, I squeezed the last possible words onto the last page and grabbed more loose pages from Dad's office so I could record just a few more days, a few more feelings, a few more memories.

Maybe someday I'll record the entire four-year journal electronically, but here's what I squeezed onto those last few pages during Mom's last few days:

April 6, 2004 (Yes, that’s a four!)
I thought I had filled up this journal to you – this journal that had far too few pages to document your journey – long ago. But there are two more pages left, and if I write really small…

I was here last week with Nikki, drove home on Saturday because we thought it would be a while. Spent Sunday with my family, got ready for work on Monday, and on the way out the door, Dad called: “You might want to be here sooner rather than later.” So my brothers and I are all in Ashland now because… it’s time. After almost exactly four years, it’s time. The Hospice nurses now predict “a few days.” You aren’t you: not controlling, not in charge, not loud. Not walking alone, not eating, not talking. In diapers – which you hate. This is so hard to watch, but it must be harder to experience. You are aware of everything, but can’t express yourself. If you try to talk you risk a coughing fit – and that is excruciating for you and so scary for us. Your words – what few there are – are jumbled and confused, but I don’t think your thoughts are. You know perfectly well what’s happening. Last week you said you were scared, but this seems different. I don’t think you’re scared anymore – but I am. I need to know – as Elisabeth says – that you’re there…somehow. Tom says Papa’s presence – even if just in his thoughts – is comforting. Elisabeth and I have chosen to believe that somehow you’ll be present. How could YOU, of all people, be otherwise?


April 7, 2004 4 AM
Soon. You always fight everything. You fight this too. Let go, Mom. Be at peace. It’s OK. It’s OK to go now. The words – when they find their way out – are barely comprehensible. In the past hour: “Oh God!” twice. “Where’s Michael?” “Where am I?” “S’Geht nicht gut.”

Why do you keep getting up to pee? There’s no pee left. Relax, Mom. Let go. You don’t want to be here like this.

I will miss you every single day. But I’ll miss who you’ve been in your life, not who I see at your death. It’s so hard to see you like this – like a baby… so compliant, so naïve, so NOT Edith. The last thing you said before I left you with dad tonight was, “Thank you, Carol.” You’re so very welcome, Mom.

4/7/04 10 AM
It’s hard to get used to: the slightest noise will rouse you and you can show with a grunt that you’re mentally here (at least to some extent), but if someone didn’t know that you’re aware, they’d think you checked out already. Your mouth and eyes are at partially open positions. You seem unresponsive… but you are quite alert under it all. You asked Michael last night, “Am I dying?” He said, “I don’t know.” But you are. This is the process of dying.

4/7/04 6 PM
Just words, barely comprehensible, but important: “Phi Beta Kappa,” “Downhill” (skiing?)

4/8/04 8 AM
You are fighting death with the same fervor and defiance with which you fought the disease. Your oh-no-you-don’t attitude is still strong – even without the ability to speak more than a garbled word or two… or eat… or stand. Oh-no-you-don’t keep that catheter in me. Oh-no-you-don’t give me meds that I don’t want (is it because you’re not in pain? Or because you want a “pure” experience?). Oh-no-you-don’t. You’re STILL in control.

What is a “dignified death,” anyway? Is it one that one orchestrates him/herself? Is it what the Hopsice workers call “a conscious death”? I know for sure what it’s NOT. It’s NOT a death that takes place in a hospital, surrounded by tubes and strangers. I’m sure of that. And as hard as it is to watch you helpless in so many ways, you are surrounded by the people who love you the most, and you are not “hooked up” and we DO listen to you and often know what you feel and need (which I’m sure doesn’t happen in the hospital). And our primary concern is your comfort (what comfort there can be…) and letting you know how much we love you. Maybe death, in itself, simply isn’t dignified. But maybe a death when Nature brings it, surrounded by love and compassion, is the most dignified it can be. I believe that there’s important work going on as you transition, and for the first time in my life I’m pretty sure that there even IS a “transition” and that there even IS another side. That work that you’re doing – whatever it is – is what makes this death, one that occurs in its own time, dignified. That’s what I’m choosing to believe, maybe selfishly, maybe not. But it’s the best I can do… and as “correct” a belief as anything else.

4/8/04 12:30 PM
Incredible. You absolutely insisted on having everything OFF – catheter, diaper, nightgown, even blankets. Everything! For a while, we couldn’t figure it out, but it became apparent that you were determined to lie flat on the bed, in the light shining from the skylight, stark naked.

Then you shared where you are with us:

“It’s peaceful.”
Almost singing: “Where I’m gooooing!”
Helicopter (Hawaii? Alaska? Dad knew and he and Mom agreed…)
“Elisabeth ferien” (about their trip to Germany when Elisabeth was 13! This one made me sob, and I told Omi that Elisabeth is sooo much like her, it means I get to KEEP Omi through Elisabeth. She grimaced and “sobbed,” without a sound, a tear running down her cheek…)
“A lake”
“Floating in there.”
“She’ll be there.”
“Will (we’ll?) be ready.”
“_____ (name?) will be there.”
“I want to geh.” (Trying to get up and go with entire body… legs in cycling or hiking motion.)
And then, she did something she hadn’t done in two days: she opened her eyes and focused – on Dad – and said to him, clear as a bell, “Can you carry me over?”


4/9/04 4 AM
She’s no longer responsive to our questioning. Her eyes are almost always closed. And yet, she continues to insist on getting up (but she’s like a rag doll; it takes three or four of us to make it happen) to pee every few hours.

9:30 AM
Difficult effort to communicate. Voice no longer reliable; must look at tongue, lips, throat. Very difficult to discern. MUCH guessing. The place was likely a lake (“Wahlsee?”) and the memory was obviously NOT a happy one. Now looks asleep, except one eye very slightly open – still… always.

3:00 PM:
Deep sleep since noon. Very regular breathing. Strong.

8:30 PM:
Mom is almost totally unresponsive. No muscle tone whatsoever. Eyes shut, except a slit in the left eye. Opaque sheath over her eyeball (can she see?). And yet, she STILL insists on getting up (it takes three of us!) to sit on the commode and pee – and she does pee!

5:00:
She said to me, “My mother.” I said, “Your mother? Let me tell you about MY mother!” And I did.

4/10/04 5:45 PM:
And that was the last thing she ever said to me. After that, she went into a semi-comatose state. She still flailed and wanted to sit up, but only one last time, early this morning. Since the she’s been completely limp and non-responsive.

At noon, the Hospice nurse came. Mom was in distress: pulse 105, respiration 25. Working too hard. Until she could calm down and stop fighting physically, she wouldn’t let go, the nurse said. At 3:30 we (Dad, Chris, Michael and me; Stephan had to go home) tried to give her a full cc of Morphine and ½ cc of Adavin. But she couldn’t swallow anymore and she choked – the loudest, scariest, most god-awful terrified (and terrifying) sound I’ve heard in a long time. I didn’t know it was choking; I thought it was the sound of death! I called, “Mommy!” and ran out of the room, covering my ears. I couldn’t handle it. But it wasn’t death. It was her body working – still working – to live. After that, we turned her on her side, and that’s where she is now, breathing slow, shallow, regular breaths @ 12 per minute. God, she is so incredibly tenacious – in life, and, it seems, in death… or at least in the process of it.

8:30 PM:
She’s not my mother. My mother left after she shared her “transition” with us on Wednesday. She doesn’t look anything like my mother. She looks like a skeleton. No character, no spirit, no personality. Now we’re just caring for her body until it gives out – likely within hours.

I had a thought/dream (not sure which; I’m hardly sleeping at all!) in the middle of the night: Miss Saum, my kindergarten teacher, used to pin “notes to go home” on our clothes. I dreamed that I pinned a picture of Mom at her most beautiful to her body so the mortician could see how beautiful she was before he cremated her. I wanted those who would care for her body to know that she was SO not just another skeletal cancer patient.

4/11/04
Just before dawn on Easter Sunday, as the half-moon rose over the horizon, Mom drifted peacefully and quietly from this life. (Dad held my hand as we walked down the hall and as we approached Mom he said, “If you’re very quiet, you can hear how peaceful death is.”)

Her breaths were like a tiny, delicate little bird’s: very shallow, very regular, and very soft, with a faint rhythmic “click” to each breath. She looked totally relaxed. But she didn’t look like my mother. Mom had taken leave two days before. That was so obvious to me as we helped “usher” Mom’s body across as she’d asked. Over the period of an hour, she drifted so sweetly and peacefully away, surrounded by her family, and within the glimmer of a Bavarian candle.

After she died, Dad went outside and picked a dogwood flower and placed it on Mom. He commented to me that dogwood flowers only stay totally white for a short time. He was right: in a matter of minutes, dark spots appeared on the tip of each flower. Then we all sat with her. No one cried. It was simply too serene and beautiful, too “holy” even, to cry. Michael and Dad even took a few pictures. Mom looked beautiful in her white lace gown, under the white lace sheet, with the white dogwood flower on Easter morning as the sun rose.

About two hours after Mom died, a Funeral Alternative couple came to get her. A husband/wife team, they gently told us what would happen. State law requires gloves and a plastic sheet and that she be covered and encased. Previously, I’d thought I couldn’t stay for such a thing, but I would have never considered leaving at that point. They handed me the dogwood while they wrapped her and placed her on the gurney. Then they “zipped her in,” forgetting to replace the flower – which I wanted with her. So I found my way to her, unwrapping her, and placed the flower on her chest. Then I gave her a kiss and said, “Schlafy, schlafy (my family’s “sleep tight”) one last time.


4/15/04:

I am so honored, so blessed, to have shared Mom’s life, and death, in the past three weeks… and four years… and forty-seven years. So incredibly blessed. And I have Mom to thanks for showing me how peaceful death can be. I love you, Mom. Thanks for being such a wonderful mom. And sister. And even daughter. You will always be with me – as all three.

Isn’t it fitting? Almost exactly four years ago, I wrote to you as we flew amid turbulence in the tiny LifeFlight plane to OHSU, promising you we’d fight your battle together. And today I’m in a plane again, making my way back to my family after spending three weeks with you. I know that, although we lost the fight, we did fight it together. I did keep my promise to you.

Be peaceful where you are, Mom.