Jan 30 2010

Accompaniment

I’ve been sleeping on the loveseat in my mother’s study. You would not think it comfortable, but curled into a fetal position within its square arms and rounded pillows I manage to find restorative sleep. Not that it is uninterrupted sleep, but at least there is plenty of it. I cannot help but compare the rhythm of these nights to those first ones just after bringing my babies home from the hospital. There is something satisfying about the tender caretaking that is administered in the quietest part of the night.

We are spun in the cocoon of Hospice. A cold and white winter waits outside. We are warm and attentive within the walls of this old, noisy house. When my mother sleeps, I hear the sounds of ticking clocks and shutters knocking in the wind. The furnace kicks in and rocks the whole house, just like it always has. I like all these odd, familiar noises, even in the night. They keep me company when my mother is asleep.

A social worker called and asked to come see my mother, who is not that interested in visitors, but we realized this is all part of the Hospice checklist. As it should be; aside from the furniture, the physical care and the advice about administering pain-relief, it is entirely appropriate to assess the dying patient’s need for psychological and emotional support. It’s not like everyone knows how to die.

She arrived with a notepad, an over-compassionate expression and a gift, a hand-knit shawl. She asked all the questions my poor mother has answered already a half-dozen times in the last week as each Hospice staffer has come to meet her and familiarize themselves with her case. And then more questions: Are you ready to die? How do you feel about dying? My mother has done much thinking about this topic, evident from that natural language she used to convey her state of mind. She graciously indulged the long string of questions, though it taxed her to talk for so long. And then finally, she’d had enough.

“You know,” she said, “I remember something Elisabeth Kübler-Ross once told me…” (I wish I could repeat the rest of what my mother said, I’m sure it was wise. But I didn’t hear it because of the extra-loud Ch-Ching that went off in the back of my brain.)

A personal affiliation with the Guru of death and dying obviously trumps an inquisitive social worker. My mother has always known how to gently move things along. Some final small talk, appreciative goodbyes and call if you change your mind about the Chaplain. Yes, of course, and thanks for the shawl.

(Kübler-Ross, it turns out, was a commencement speaker at a college where my mother worked. Mom really did have occasion to speak with her, at length. Who knew?)

After the social worker left, my mother eyed the shawl. “Make sure it ends up in one of the boxes upstairs, for the yard sale.” For years she’s been putting stuff aside for this heralded event. Even in the last days of her life, she is still anticipating the moment when her home will be free of the clutter she’s collected. I told her that in heaven there are effortless yard sales, managed by angels, where everything sells.


Jan 25 2010

What You Must Do

Once triggered, a strong memory can hover. It stays close to the surface, stretching its legs after being folded into the recesses of the past, aching to be a story that’s told again. Just a week ago I wrote a few paragraphs about a gripping period in our life, five years ago, when Short-pants had a medical crisis. I don’t mean to dwell on it, but it comes to mind again this week, with good reason.

It’s a story we try to tell enough so Short-pants can own it without shame. It’s a story we try not to tell too much, so it doesn’t become the dominant story of her life. Sometimes, when I visit her room to adjust her bedcovers while she sleeps, I trace my finger along the arced scar that crowns her head. I once told her it was a permanent tiara. I’ve heard her repeat the phrase with pride. That’s the thing about a scar; it’s a story you get to tell for the rest of your life.

Short-pants’ six-week stint in the neurosurgery ward started before Thanksgiving and spanned the holiday season. I was prepared to throw in the towel on Christmas; I had no energy to shop, decorate or enact the role of Mère Noël. But friends and family pressed the spirit of Christmas upon us. They sent gifts for the girls, optimistic that Short-pants would survive, determined that Buddy-roo wouldn’t go without the full-on holiday fuss. Our neighbors surprised us with a 6-foot Christmas pine. And there were angels – so many people sent angels. We must have received five or six hanging angel ornaments for our tree.

One angel in particular was – and still is – my favorite. It was a gift from one of De-facto’s aunts, a woman who sets a classy standard for the family, a woman who has navigated the burdens of her life with tremendous grace. The ornament is made of silver. It’s heavy in your hand, and when hung by its lace loop, pulls the bow of the tree low toward the ground. There are words engraved on one of the wings:

You must do the thing you think you cannot do. – Eleanor Roosevelt

About the time this silver angel arrived, I was at a wall. It wasn’t much fun, being a hospital mom. Every day, punching the intercom buzzer to be let in to the ICU, sitting at Short-pants’ side, worrying and wondering while trying to assure her and give her hope. At the same time staying alert to the nuances of the doctor’s throw-away comments, hounding them down to find out what and why and when. I went to the hospital every day; De-facto and I took shifts, morning and afternoon, overlapping a few hours mid-day to be there with her together. By the time Christmas was near, I was completely spent.

I remember opening the box and rubbing my fingers along the wings of the angel, touching the words, as though I might be able to physically absorb them. Isn’t it perfect how the universe knows when you’re desperate and sends you exactly the message you need to hear? I will always cherish this angel. I have a little moment with her every Christmas; I have not yet succeeded to place her on the tree without weeping.

My mother had planned to spend the holiday with us that year, so she came as scheduled, bewildered at first about how to help, but then finding her way, baking Christmas cookies, doting on Buddy-roo. The hospital was very strict about “parents only” in the ICU. Whenever friends came to support us there, they were obliged to do so from the waiting room. But on Christmas day, one of the more compassionate doctors had a word with the nurses on duty, and an exception was made.

So there was my mother sitting on one side of the hospital bed, me on the other. She reached across Short-pants’ sleeping body and rested her hand on mine. I had grown accustomed to seeing my 3-year old daughter tucked tight under the blanket, emaciated, listless, with a helmet of gauze wrapping on her head. I was used to the machines and sensors and tubes. For my mother, it was startling and disturbing. “I just don’t know how you do this every day,” she said.

I can count on the fingers of one hand the number of times I’ve seen my mother in tears. She’s just not a cryer. But now she sat across from me, wet-eyed, pained to see what we were enduring each day.

“Somehow, you just do it,” I told her, “you do the thing you think you cannot do.”

These days Short-pants is fully recovered from that grim experience, immersed in her vibrant life, sometimes in the clouds, but with a well functioning intellect and imagination and a healthy emotional intelligence. My mother has relished the opportunity to watch her grow into the soulful young person that she has become.

But now I’m sitting by another hospital bed, the one that’s been set up in the study of my mother’s house, the bed in which she will be spending her last days. After a valiant contest with leukemia, an opponent that she held at bay for much longer than anyone – especially her doctors – expected, she is letting go. She will take no more treatments, no more blood transfusions. She has decided to let her life run its course.

This is hard. It’s hard to say goodbye, it’s hard to see her suffer. But I know what I must do. I will sit beside her. I will hold her hand. I will squeeze it so she knows I am there. I will hold it the way she has always held mine. I will do that thing – if I must – the thing I think I cannot do.