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The Last Gift

1/30/2014

It's hard for me to choose a gift for a dying person. My mother-in-law, Mar, was dying of pancreatic cancer when the family assembled on Christmas Eve 2000, and I had tied myself in knots beforehand thinking through all angles and implications of what she might need, or want, or be able to use, and what it would feel like to look at the new thing I'd carefully chosen once she was gone.

So I wrote Mar a letter, the first and last one I ever wrote her. And whatever else was wrapped in paper under the tree, the gift she gave us was to get out of bed one more time, and laugh and smile with us.

I wrote Dad a letter for my last gift to him. I reprint it here in its entirety.

December 23, 2012

Dear Dad--

To paraphrase Amanda, the difference between taking care of you and taking care of a baby is that the baby doesn't say “Thank you” when you say goodbye.

I don't know when I'll have to say goodbye to you for good, so I wanted to say thank YOU now for taking care of ME.

Thank you for picking me up when I was little. I forgive you for stopping when I got too big.

Thank you for singing to me, for reading to me, and for playing the recorder. Thank you for taking me to movies, plays, concerts, and dances. Your deep love of the arts inspires me.

Thank you for taking wonderful photos of me and other family members.

Thank you for trying to get me to stop eating lettuce and grapes to support farm workers' rights. Thank you for joining the March on Washington. Your liberal values have helped guide me through life.

Thank you for supporting me, emotionally and financially, even when you saw little of me. All around, of the all the divorces I've heard of, yours seems to have done the best at maintaining civility and love amongst a family divided.

Thank you for your good humor and tolerance for change, and your amazing adaptability. You have helped me understand how to communicate the important things better. You've taught me how to age with grace.

Thank you for letting me take care of you during this amazing time, this gift of days and hours. I will always treasure the relationship we've created out of what the Dalai Lama calls “the daily experience of hardship.”

I feel there is no way to say what I need to say completely enough, so I'm grateful I can share yet more time and love with you.

Love, Pearl

Postscript: After Christmas Adam, I noticed the letter lying around, unopened. I didn't know what to say to Dad about that, and there were a lot of other pressing matters (like hydration, and positioning, and bed-bath scheduling and hospice personnel visits). Eventually, Carol and Amanda mentioned that he was nervous about what was in the letter, and that he wanted me to read it to him. I did, and he smiled and thanked me.

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Symptom, or Personality?

1/23/2014

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When — despite the radical contingencies, the happenstances, that you know have determined so many aspects of your life, beginning with your very conception — you start trying to shore up its fragments into some kind of organization and meaning, your memory, despite its notorious unreliability, provides the most important information. It has already verified and falsified and winnowed the past in a way that begins to form, for you, patterns and through-lines. — Daniel Menaker, My Mistake

The question arises: Did my father act the way he did because of his symptoms or his personality? He died of a rare genetic disorder called Adult-onset Polyglucosan Body Disease (APBD). Symptoms of APBD include "gait difficulties" and "sensory loss predominantly in the distal lower extremities" as well as "mild difficulties in cognition (often executive dysfunction)." By the time he received this diagnosis last fall, it hardly mattered. He'd begun to have strokes after a year of other, often mysterious reasons for hospitalizations, and it seemed most likely he would die of a stroke.

The ABPD diagnosis followed 20 years of "no-diagnosis-means-no-prognosis" uncertainty. The only thing that seemed certain about his disease was that it was a progressive neuropathy, meaning that over time, more and more nerves died off, and he became less and less capable of moving his lower extremities.

What seemed less certain was how much of the Dad's behavior was due to his disease. Dad was a renowned slow talker, and before he got a wheelchair, a painfully slow walker. I referred to him as "Our father who walketh ten paces behind us." Would I have mocked him if I'd known his nerves were degenerating for a long time before he displayed more dangerous symptoms, like falling off his bike?

His speech could be so deliberate that at times I forgot what question he was answering. During his year of repeat hospital admissions, medical personnel would remark his slow speech, and I'd respond that he always talked that way. He was a mathematician, and enjoyed logical, precise, specific speech. Once he complained about people using "numeral," "number," and "digit" interchangeably. He maintained that he was truly confused by the colloquial blurring of definitions.

In the rehab center he went to after a storm of strokes, he had exercises where he was asked to name a set of objects. I held my breath as he stared at a pen, willing him to name it. After a long pause, he came up with, "Papermate ball-point pen." We laughed, his audience, in relief that he got it, understanding that he needed to show complete mastering of naming. Today, I thought, we have the naming of parts.

There were times when I wasn't sure if he was having trouble hearing, mentally processing, or being serious. He had a habit of repeating back nonsensical mishearings, and I told him firmly that it was important to me to know whether he was having trouble hearing or thinking. He persisted in what seemed like perverse cuteness until I asked the speech therapist in his rehab facility for help, and she suggested he use the prompt, "Say it again, please." Mostly, he did this. Mostly, I do it with my kids--except when I think it would be hilarious to repeat back the weird thing I thought I heard them say.

Symptom, or personality?

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Jew-ish Yahrzeit

1/16/2014

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Pearl: Were the Olsens Jewish?
Steve: Is, is Naomi Jewish?
Pearl: I’ll have to ask Naomi.
Steve: You’ll have to ask Naomi?
Pearl: Yeah, if she’s Jewish, but, uh...
Steve: Well, you’ll have to explain what it means.

Some members of my family consider themselves Jewish, or secular Jews, others not. Some of us prefer the term "Jew-ish." We've had many conversations around the Passover table about who among us consider ourselves Jews. (When I had to miss a Hanukkah dinner because of work, my then 8-year-old daughter said to me, "Well, you're only half Jewess.")

The person who had the best claim for Judaism was the one who was always clearest about not being Jewish: my father. Which makes it extra-interesting to me that all of his children and his wife decided to burn yahrzeit candles on the anniversary of his death.

Being secular Jews, we had to discover for ourselves what the candles meant. You're supposed to light the candle at sunset on the day before the actual anniversary and burn it for 24 hours. Optionally, you can recite the mourner's prayer, the Kaddish. I don't know the Kaddish so I read A.A. Milne's poem "The Three Foxes" while my children embraced me. (I chose that poem because it was NOT one that Dad recorded for me in the last month of his life and I thought it's lightheartedness would keep me from crying. It didn't.)

While I thought of the candle as a little bit sacred (is that like being a little bit pregnant?), when I discovered in the morning that mine had burned out leaving a hollow core in the center of the beeswax, I added a tealight so I could use up all the original wax. That seemed somehow important.

In the afternoon, my sister and stepmother and I gathered for an hour of remembrance. We had been like a three-legged stool during Dad's last months, relying on each other for support, and it seemed fitting to have time to ourselves. Later, we were joined by my brother-in-law and Dad's friends, the Princes, from up the street. We talked and cried and ate cake and drank whiskey and wine. (One source my sister consulted said that while cakes and drinks were appropriate, the gathering was not to be a party. No worry there.)

The yahrzeit candle has, of course, symbolic meaning: "l ike a human soul, flames must breathe, change, grow, strive against the darkness and, ultimately, fade away. Thus, the flickering flame of the Yahrzeit candle helps to remind us of the departed soul of our loved one and of the precious fragility of our life and the lives of our loved ones, life that must be embraced and cherished at all times."

When I got home, I started to get a little worried about the symbolism I was creating. My daughter told me the candle had gone out a couple times, so she'd added more tealights. I like I was creating something of a mess, and I was a little lost. Should I keep adding to the candle? Should I just allow it to stop on its own? Should I put the candle away when it was still messy?

How very like my relationship with Dad: a little bit confusing, a little bit unknown, made up on the fly, full of questions about the past and the future. Untidy and real.

My younger brother left his yahrzeit candle burning on his bedside table and woke up a couple times to see it still alight. "I think they know something, those Jews," he said.

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One Year Later

1/9/2014

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Just try it.

In a conversation I had with Dad a month before he died, I decided it was time to start asking him the questions I wanted answered, rather than simply following his thought patterns.

I'd spent several months following his commentary on the mathematician Alfred Tarski (whom Dad saw speak on the day I was born), the director Alexander Korda (whose family was given family names by the Austro-Hungarian Empire, as presumably ours was), and Clara Schumann, among other luminaries in his mind. Now I was getting impatient and a bit fearful: I could see him dying before I got all my questions answered, and then I'd carry around unfinished business for the rest of my life.

So I started asking the question only he could answer: What's it like being my dad? The addresses he'd lived at, the names of the institutions he'd attended and been employed by, the dates of a certain plane trip and the location of the refueling stop for the DC-6 on that trip--these, I began to feel, were topics that maybe could be answered through online research; the kind of research I wanted to do concerned what only Dad knew. The kind of knowledge that would die with him.

That conversation failed spectacularly. The problem was, my sister pointed out recently, that "What's it like being my dad?" is a hard question to answer. If somebody asked me what it was like being the mother of my children, I'd be in trouble. I love my children, but I don't know what loving them is "like." Had I simply asked Dad to tell me a story about when I was a baby, I might have gotten closer to where I wanted to be.

And when I really listen closely to the things he did say, I can capture what I seek. Dad often said he didn't feel competent taking care of babies--that to have some way of interacting with his kids, he took photographs of them. He saw the photos as collaborations between himself and the subjects. If I need to know more about those relationships, I can look at his body of artistic work.

That, and my memories, and others' memories, and a whole bunch of letters. These are the only relics I have to go on. And they will have to do.

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The Hero's Journey

1/3/2014

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More than one person called me heroic for taking care of my father in home hospice. My whole family was heroic; my sister, Amanda, and my stepmother, Carol, and I were particularly heroic in our close and daily attention.

Being something of a literalist, and having encountered versions of the "Hero's Journey" in more than one context last year, I decided to look closely at the ways in which my own journey resembled that described in the directing course I completed last year. (My very basic understanding of the hero's journey is due to my teacher John Jacobsen, and any gaps in understanding are my own.) I can't speak for the others in my family, but if I am at all heroic, it is because my journey followed this pattern:

The hero starts out in the Old World, the place where expectations are already known and perhaps already burdensome.

I always found it challenging to spend time talking with my father. Dad's sentences and stories could be exasperatingly drawn-out and detailed. He enjoyed what we called the "thought-you-said" game, in which his mishearing was repeated back to the listener as nonsensical syllables. I've described my father's attitude toward me as more avuncular than invested. I wanted more but I never knew how to create it.
There is a Call to Action, which the hero disregards repeatedly until
a Compelling Action, often instigated by
a Mentor, makes staying comfortably in the Old World no longer possible, and
the hero chooses to cross the Threshold.

Dad once mentioned that although he'd gone through a period of unhappiness, he was a happy person, and furthermore, that his marriage to my mother, though it had ended in divorce, represented a significant time of his life. He was open, he said then, to talking about what happened between him and my mother.

I took more than 25 years to take up his offer. After two hospitalizations in 2011, when I decided he might be going to die soon and I didn't want to lose any of his stories, I decided I didn't want to die wishing I'd asked him difficult questions. I started the conversation I wanted to have.

After further hospitalizations, culminating with the stroke we'd been looking out for and its subsequent rehab, my family consulted with Tony Back, a doctor my family relies on. Tony wasn't treating Dad; he just offered to help us out with a conference call and a family meeting, both of which were instrumental in preparing us for home hospice.

That's how I became one of Dad's caregivers when he came home to die. And from there, I started recording his stories, some of his phone conversations, and several readings of poems that meant a lot to him.
Now the hero is in the New World,
where there are tests and challenges that culminate
in the depth and darkness of the Cave, where the hero encounters the challenge that can make or break her.

I couldn't do my work because I couldn't sit without thinking about Dad and crying, so I told my writing clients good-bye for a while. I took on a new job: Dad's memoirist (a position I shared and continue to share with Amanda). The New World meant spending about 20 hours a week in the house with Dad, helping him stay hydrated and well-turned and entertained as needed. It meant meeting with hospice personnel and hunting down lost relatives and joining Carol and Amanda in the kitchen for tears and whispers. It meant asking Dad questions and helping him chase down his elusive yet repetitious memories. It meant reading to him, loudly and slowly, from the book Charmed Lives by Michael Korda. It meant searching through his photos for the one elusive shot of Aunt Gert that I never found.

The New World was that Dad was going to die, sooner rather than later, yet if he lived long enough and didn't seem close enough to death, we'd lose hospice care. Damned if you die, damned if you don't.

The Cave was chock-full of challenges. I was challenged to be present with Dad's wandering mind. I was challenged to be honest, clear and firm with him and others—and myself—about how near his death was. I was challenged to take care of myself, and in lieu of taking care of my kids and husband, to at least not deliberately try to make them feel as sad as I did by lashing out.

One foot in front of the other, every day, whether I needed it or not.

Mostly, my challenge was to confront my biggest, oldest fear, the fear of death. In a way, it was easy, since the family had talked Dad into reinstating his Do Not Resuscitate order, believing it would be better for him to die at home soon rather than in a hospital with his ribs broken hooked up to machines so we could get a few more days or weeks. There are worse things than death, and lingering, painful, technologically mediated death is one of them. Yet it still seems like a miracle that one night I looked in the mirror and told myself, "No more fear of death," and it worked.
At times, especially in the Cave, the Hero will consider turning back to the Old World without completing her mission.

There was no turning back. I mean, I could have quit taking care of Dad, and thereby taking care of Carol and Amanda, and hunkered down unmoving in the Cave. But there was no way to stop him from dying, and my mission was to be with him a lot before he died.
The Hero finds the strength to find the Road Back and bring her journey to an end.

My strength was that every time I met with somebody, I told them the truth about what I was going through, and I cried, and nobody ran away screaming. People were loving and supportive and humane.

In my return to the Old World, I bring the New World values of vulnerability, endurance, and patience. I bring the ability to speak the unspeakable and to let go of the things that died with my father, the leftover stories and memories that didn't get recorded.

There are other details and versions of the Hero's Journey out there. As you can see, not all the elements map perfectly. I haven't figured out the Elixir in my story, and I haven't named all the Advocates, who were plentiful. I include the grocery baggers who asked if I needed help out. I always said yes, because when you're trying to get out of the cave, you take all the help you can get.

Asking for help is the most heroic action I know.

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The Last Gift

Symptom, or Personality?

Jew-ish Yahrzeit

One Year Later

The Hero's Journey

Pearl Klein

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