Grief and Guilt

I’ll come clean. On the night David died, while he lay dying, I was engrossed in a Humphrey Bogart movie. It was gripping and intense.

At a crucial point in the movie, Matt said something about David. We stopped the movie and went over to his hospital bed. He wasn’t breathing.

Our family room, where the tv and couches are, adjoins the dining room, where David’s hospital bed and medical supplies had taken over. It has 1895-era pocket doors: fine doors of dark wood that slide into the walls and create a large doorway, six feet wide. A friend remarked, when I was admitting my guilty secret, “You were in the room when David died.”

In her March 30, 2020, Dear Therapist column for Atlantic.com, Lori Gottlieb tells of her father’s recent death. He died of complications after years of congestive heart disease, during the covid-19 outbreak. She states, “I was there to kiss his cheeks and massage his forehead, to hold his hand and say goodbye. I was at his bedside when he took his last breath.”. I’m attuned to such statements in all their nuance. She paints a vivid picture. Well, she doesn’t SAY she wasn’t watching Bogart, but at least she was holding her dad’s hand.

But Gottlieb continues her narrative. Five days before he died, she developed a cough and decided to stop visiting. They spoke every day, except Saturday, when she was busy gathering supplies for the lockdown. The next day he could barely talk and just said, “I love you,” before losing consciousness. The next day, he died.

Gottlieb was wracked with guilt. Had she been in denial, even though they had talked about his impending death? Had she failed him?

A few days ago, early in the morning. I read her column.. I lie in bed, scrolling down on my phone, tears streaming down my temples onto the pillow as I squeezed my eyes shut to clear my vision. Jim woke up and I handed him the phone to read. He observed that we all focus on what we regret, what we didn't do. She had spent every day with her dying father and was protecting him from the infection she had, even if it wasn’t covid-19. Had she donned a mask and gown and visited, and he’d gotten sick, she’d feel bad. Perhaps there was no way not to feel bad.

In her book, Maybe You Should Talk to Someone, she asks, Is it ever enough? No, it’s not. Can we make it enough? I hope so.

I’m tired of keeping this secret. Perhaps someone out there also feels guilty for not orchestrating the perfect death scene. Death isn’t pretty, picturesque, or neat. It’s ugly; it’s brutal; it’s gut-wrenching.

That evening, I took a walk with R’el. Once a week, as she is leaving work (she’s a psychiatrist at Bellevue in Manhattan), she phones and we walk together, 210 miles apart. She remarked that David was a very private person. It might have comforted me to sit by his side and hold his hand as he breathed his last. It would not have pleased him.

Thanks, R’el.

Four Years On

A friend of mine, Cami, taught a Relief Society class (women’s group at church) a few weeks ago and sent out a quotation she found on the internet: an old-timer talking about grief. I was organizing my emails and wanted to copy the quotation to save it on my laptop. Where to save it? I searched for grief and found a spreadsheet with a series of questions that Jim, Annie, and I answered in February of 2016: six months after David died. I found no surprises, but one thing stuck out:

Ever since we came back to Lexington in May 2014 I have carried a BOX of tissue in my church bag. I'm always prepared for unplanned tears. David's death is another motivation to living my life more consciously. However, it's hard to get out of bed in the morning and hard to get things accomplished, so that's a frustration.

When did I stop carrying a box of tissue in my church bag every Sunday? Six months ago? Three? The box had gotten pretty banged up and I hardly used it, but for the first three years I felt comforted having it nearby.

And when did it become easier to get out of bed? I suppose it was gradual. I’m in a much ‘better’ place now. What does that mean? We Americans are so afraid of painful emotion. I’m grateful for the grief, even the intense grief. I want to feel; I want to miss David.

And I do miss him. Just an hour ago I looked up at the pencil drawing of him, smiling and ‘extremely presentable’. It’s becoming obvious that the picture isn’t aging and his siblings and cohorts are. I’m becoming one of those weird grieving mothers with the old photo of a long-dead child. He’s not long-dead yet, but it’s coming.

Doing further surveying of my computer files on grief, I found a document I made of bereavement support groups. During the last two weeks of his life, David received care from Good Shepherd Hospice. Part of their service is to provide grief counseling support to family members for 13 months after the death. Jaye was our counselor. At the time of his death, that seemed very generous and more than adequate. However:

18 Jul 2016. I’m in a panic that the Good Shepherd Hospice grief counselling will be over in another 7 weeks. I have only been to see Jaye twice, but both of those were so significant. I’m going again. I wanted to go on the 11th monthiversary, but she has conferences on Tuesdays, so I’m going this Friday. Can I tell her I’m panicked, that I’m afraid of what Kimberly told me, that the second year is the worst? I hope I can. I hope I can be honest with her and find healing in the honesty. I hope she can help me navigate this unknown territory. It will remain unknown for a long time, for my whole life, but I hear it will get less intense. Life will get better.

Called Mt. Auburn Social Work asking about a bereavement support group. Left a message, while breaking down into tears and a squeaky voice. Apologized in the voicemail for the tears. “She will think I’m a basket case: it’s already been a year.”

Found A Compassionate Friend website and a monthly support group in Concord, 16 minutes away. “Well, if it’s only once a month, they must not expect you to be over it in 13 months.”

It’s hard not to distract myself. Hard to know whether it’s healthy. Hard to know who I can share this with.

Two days later I wrote:

I am feeling much calmer today. Maybe reading these grief books has been too intense; maybe it’s healthy; I just don’t know.

I’m glad I wrote this down. It’s hard to imagine now how panicked I was, how distraught and overwrought. That isn’t happening anymore.

Another document I found was a transcription of a voice memo I made a year ago, on the third anniversary of David’s death. I was bothered that I couldn’t keep in mind whether it was three years or four. And how I felt that

as a grieving mother I should be crying and I should be watching the time, and I should be aware that this is the anniversary of the last time he did this, the last of that.”

I remembered arranging the words from “If You Could Hie to Kolob” to Ralph Vaughan Williams' Five Variants of Dives and Lazarus while washing dishes when David was sick. I had fantasized about singing it in public and wondered if I could ever sing without tears.

In early grief it feels like it’s never going to change, that it’s always going to be excruciatingly raw. Even though people tell you it won’t be, you can’t imagine it. That’s the cognitive distortion of strong emotion. It’s one that I wouldn’t try to talk anyone out of. I would say, “in my experience”, there has been healing of the raw wound and hope they find comfort in that. Who can predict the emotional life of another person?

So, as the fourth anniversary of David’s death approaches, I can say that there has been healing. I miss David and am terribly sad that he is missing out on the mortal experience of adulthood. But I’m not overwhelmed with grief and sadness.

Another entry I made in July 2016, 11 months after David’s death:

So, how will I breathe as Victoria lives her life forward while all there is of David’s life is to live it backward? Is this why I can’t go visit them? Is it the truth I guessed at earlier in this 11-month journey, that Victoria’s birthdays will surpass David’s death anniversaries? Part of me sees that as inevitable, as I did intellectually when I thought of it months ago, but a deep emotion wells up inside of me that it’s not fair, that there could have been both: Victoria and David growing older together.

Now, with three more years past, I can breathe, and freely. Seeing Victoria grow into a loving, curious, vivacious four-year-old doesn’t make me sad; it fills me with deep joy. Of course, I wish David could be alive and enjoy the niece he never met. But I'm not in debilitating agony. What I can do to honor David is to live my life fully and be fully present in the lives of his beloved nieces and nephew, our grandchildren.

On Being Mortal and Hallowe'en

Jim, Matt, Xiomara, and I attended the Good Shepherd Institute dinner, with Atul Gawande as the keynote speaker. His book, On Being Mortal, should be required reading for every American over the age of sixteen.

We heard about the dinner through the Good Shepherd Hospice newsletter. Our son, David, was a hospice patient with them for two weeks before he died. They took good care of him and of us. Their grief counselor helped us through the first year after his death: I still think about things she said.

When introductions were being made around the table, I mentioned David and our connection to Good Shepherd. I also said I had read On Being Mortal when David was sick. A woman remarked that I was very brave to read it in those conditions. But I was grateful for the insight Atul gave me. It strengthened my resolve to have David die at home.

Lori, a friend of mine, told me she hates Hallowe'en and the way it makes death terrifying. I agree to a point: I don't put up scary lawn decorations or dress like a ghoul. But I like the costumes and candy and the chance to meet young neighbor kids.

We live on a busy street at the edge of a commercial district and have rarely had more than two or three trick-or-treaters venture up our long driveway on Hallowe'en night. This year I got proactive: I created a living room in the front yard, setting up chairs and a table with a dark burgundy tablecloth and a stuffed fabric pumpkin and jack-o-lantern my mom made forty years ago. Jim brought out a floor lamp and I mulled 2 gallons of apple cider and dressed in the dirndl I just bought at a second-hand shop in Munich. We handed out full-sized candy: Snickers, Skittles, and Starbursts. (The latter two were MUCH more popular than the chocolate Snickers). About 40 kids visited: quite an increase over former years.

Jim just came home from church in Belmont. In the time it took to drive home he listened to WCRB play Albinoni's Adagio in G minor. A peaceful ending to a rainy autumnal evening.

Boots Among the Pine Needles

Two years ago

On Thursday, July 30, 2015, David was discharged from Lunder 10 at Mass. General, his last in-patient experience. Because he was a 27-year-old young adult and therefore an atypical hospice patient, (hospice, like leukemia, is overwhelmingly an old person’s experience), Good Shepherd Hospice accepted David as a patient while he continued active treatment at MGH to keep the leukemia at bay, receiving blood transfusions and continuing to take the chemo drug, hydroxyurea. I planned to continue driving him to Cox Clinic twice a week, though actually, we only went there two more times. The Lunder 10 discharge was scheduled for 11 a.m., but in true hospital-time fashion, we weren’t cleared to go until 4 p.m. Meanwhile, the hospice nurse, Luis, and a social worker, Robert, waited in our driveway until their shift ended. They went home and later in the evening a night nurse visited and we took delivery on some IV morphine cassettes.

A few days before David was discharged, my friends, Sarah and Birgit, helped me thoroughly clean the dining room in anticipation of David’s homecoming. A medical supply company delivered a hospital bed, tray table, oxygen concentrator, portable oxygen tanks, and a suction machine (to clear throat secretions. Gratefully, I never had to use it.) Moving the dining room chairs to the basement and replacing them with the medical equipment, and taking the leaves out of our antique oak table to convert it for sickroom duty, all made his imminent death more real, though nothing could really prepare us.

David appreciated not having to climb up and down stairs: the microwave and drink supplies were now in the next room. Our couch was just on the other side of his bed, so he could come in and watch a movie with us. I don’t remember if he ever did.

I spent at least three hours studying the procedure for giving David sterile dextrose water by IV. I read and re-read the instructions, made myself a spreadsheet with detailed and thorough, step-by-step instructions, reviewed and edited it over and over again. And still I was nervous every time I did it.

R’el brought two-year-old Andrew up from NYC for a four-day visit. Xiomara was due to have their baby any day, so she and Peter had to stay close to home. David enjoyed seeing his curly-haired nephew and Andrew reciprocated by being sweet and adorable.

David spent the rest of his time napping and reading The Economist magazine and Woman Warrior by Maxine Hong Kingston, our family book group selection. He did live long enough for the discussion, but didn't talk much or maybe not at all; because of his terrible throat pain he avoided talking.

And so we quietly prepared for the inevitable.

8 August 2017

Jim and I are at Zion’s Camp in Raymond, New Hampshire. Originally owned by the Boy Scouts, our church bought it about 15 years ago and converted it into a regional Young Women’s Camp. With a waterfront on the shores of Lake Onway (having spent many years as a Girls’ Camp waterfront director, I appreciate a well-appointed boathouse and swimming area), a large dining room with a commercial-grade kitchen, both rustic and electrified cabins, an archery range with girl-size bows, and a rifle range with girl-sized rifles, it’s much different from my Girls’ Camp experience in Sharon, Vermont, thirty years ago, where we camped in tents, cooked over fires, and did crafts beneath large blue tarps in the rain.

I haven’t been camping in years, and it is bringing back fond memories of hiking in the woods, roasting marshmallows over a campfire, and swimming in lakes or the ocean.

As I walk through the woods and look down at my old sneakers, a vivid memory of my old hiking boots comes to mind.

On November 5, 1995, I went psychotically manic. I was extremely paranoid and agitated. My whole personality changed: Jim didn’t recognize me and asked some friends to take me to their house, away from our children. After some time in the local emergency room, I was transferred by ambulance to a locked psychiatric unit at Waltham Hospital (more on this in future posts).

By summer, I had weathered an intense bout of bipolar depression. R’els Young Women’s leader invited me along to help on a two-day canoeing trip down the Saco River in New Hampshire. I was thrilled.

We rented canoes in the White Mountains and paddled all day, setting up camp along the river in the evening. After supper, I walked into the woods alone. As I breathed the pine-fresh air, I watched my boots crunching the long, bronze pine needles in the dry, sandy soil. I smiled. I was back. Back from the dead, practically. Back in the land of the living, watching my brown hiking boots tramp among the pine tree roots.

Gardening and Hand Bells

Two years ago

June 9, I drove David to Jamaica Plain campus of the Veterans Administration Healthcare System, about a 40-minute drive. I didn't know why we had to go into Boston; there’s a VA hospital 10 minutes away, in Bedford. But I braved Boston traffic, parked in the VA garage, and we waited patiently in a dark, drab corridor on the third floor of a large medical office building. When we finally went into the social worker, she also couldn’t understand why we were there; the excursion was a complete waste of time. At least the parking was free.

On June 11th, the blood tests showed that in just 3 days the percentage leukemic blasts in David’s bloodstream had risen from 79% to 89% and the white blood cell count had more than doubled, manifesting in his low energy level. We had a frank discussion with Dr. Fathi and a conversation with a hospital social worker about hospice.

I re-read Being Mortal: Medicine and What Matters in the End by Atul Gawande, an articulate and thoughtful Boston-based surgeon who discusses how current American medicine fails to realistically deal with end-of-life issues. I went into this new phase with eyes wide open, or so I thought. How does one prepare for the unimaginable.

Early June 2017

I opened the online newsletter of TCF (The Compassionate Friends), the club no one wants to join. Unexpectedly, I read his name, “David Johnston”: the newsletter had a list of August death anniversaries. As evening fell, I sat at my desk, listening to hand bell Youtube videos, writing and weeping in the gentle glow of my laptop.

Two years ago I did no gardening: I was paranoid about microorganisms in the soil. Last year I didn't have the ambition. I'm glad I didn't: I'm often inconsistent with watering and with the drought, any new plants would have shriveled and died. As it was, I almost lost my perennial rhubarb from my neglect. When I finally looked at them in August, they were languishing and limp. This year, after debating all spring, I bought tomatoes and basil and petunias. But it was cold and rainy while we were in Charleston; they hardly grew. My rhubarb, however, is glorious. I bottled 7 pints of cranberry rhubarb jam.

Another glorious thing in my life right now is hand bells. I mentioned this in February: a new friend of mine owns his grandmother’s hand bell set. She, Margaret Shurcliff, brought English hand bells to America in 1902. At this point, our intrepid little hand bell choir is really just messing about. That's a quote from a favorite book of mine, The Wind in the Willows: Rat asserts to Mole, "Believe me, my young friend, there is nothing — absolutely nothing — half so much worth doing as simply messing about in boats." I feel the same way about hand bells. The feeling of power, flicking my wrist and producing a huge ringing sound: there is nothing like it.

If you didn't watch it in February, check out Eui Gon Kim's solo. And Kevin Mazimas Ko, who plays six bells at once!

Sticky Leukemia Cells

Two years ago

In my blog I report that David’s WBC count skyrockets during the week of his Chicago road trip, from 24 to 90. (Normal range is 4 to 11). I don’t mention the reason: David forgot to bring his hydroxyurea, the drug that kills blood cells and keeps the leukemia in check.

Tuesday, December 2nd, the WBC count has risen to 95. Dr. Gaby Hobbes, covering for Dr. Fathi, initiates a conversation she hopes is premature. At this high volume the “sticky” leukemic cells can clog capillaries in the organs, including the lungs and brain, causing serious complications and even death.

I ask to see a social worker about hospice. I am shocked to learn that hospice is 98% family-given care; evidently my picture of hospice being hospital-level care at home is a common misconception. I still want David to die at home; I hope I’ll be strong enough.

Thursday, December 4th, my 91-year-old father, Dr. George G. Hazen, dies of a heart attack. That week he’d swum his usual laps at the YMCA; his death is unexpected. I post a tribute on my blog.

Early December 2016

First snowfall: Monday, December 5

David's grave after first snow

The Compassionate Friends, a support group for bereaved parents, grandparents, and siblings, meets in Concord on the first Monday of each month. Jim and I attend a Boston Philharmonic Youth Orchestra at Symphony Hall on November 7th; for the month following I look forward to Monday, December 5th. A friend of mine describes going to a bereaved parent support group several years ago and deciding that she didn’t want to make the loss of her child her identity. For me, I find great comfort in being with parents who know what it’s like to lose a child.For now, it is a place to say David’s name aloud, to talk about my sorrow and face the grief. It’s a club no one wants to be a member of. It’s a club that brings me relief.

This Sunday, December 11, The Compassionate Friends is holding their annual worldwide candle-lighting. Please join me by lighting a candle at 7 p.m., local time, to honor all the sons and daughters, brothers and sisters, and grandchildren who left too soon. Imagine the candlelight circling the globe that night.

Evening of Remembrance

On November 12th, Good Shepherd Hospice held its annual “Evening of Remembrance” for all the hospice patients who had died in the past twelve months, from September 2014 through August 2015.

Jim planned to drive straight from the ferry on Cape Cod, having spent the day on business in Nantucket, so I invited my friend Amy to drive with me to the service in Newton, about a half hour from our house.

We meet in a small auditorium set up with chairs; two long tables flanked a small podium in front. Thirteen white pillar candles and thirteen heart-sized smooth grey stones rested on the tablecloths. A staff member walked to the first candle and lit it as Jaye, the grief counselor, held the first stone in her hands. As Jaye gently turned the stone in her hands, a social worker read the death dates and names of all the hospice patients who had died in September, 2014. There were about thirty names. This ritual was repeated for October, then November, and each month in turn: well over 360 names. It was overwhelming. All those sorrows, and this at just one hospice memorial.
The thirteenth candle was for anyone else we wanted to remember. At my suggestion Amy had submitted the name of her late husband, Kerry. It hadn’t occurred to me to put in my parents’ names; I was so focused on David that evening, but I honored them in my heart as the last candle burned.

I thought October would be hardest and then life would start returning to normal. But November hit me hard and December is starting slow, yet another day I struggle to get out of bed, look helplessly as my email inbox count rises above 300.

Last night a friend of mine called: her son-in-law had just been killed in a freak work-related accident. Suddenly I was on the other side of shock and grief, struggling unsuccessfully to find words to express the support I wanted to give. It’s a strange experience, grief. How do we give comfort, keep the sorrow from separating us from each other? I’m reminded of the writer, Anne Lamott, and her blog post after Robin Williams died:

Gravity yanks us down, even a man as stunning in every way as Robin. We need a lot of help getting back up. And even with our battered banged up tool boxes and aching backs, we can help others get up, even when for them to do so seems impossible or at least beyond imagining. Or if it can't be done, we can sit with them on the ground, in the abyss, in solidarity.

Dear readers, I want you to know that you do support me in my grief. I hope I can pass it on.

Balloons

            David drifts between consciousness and peaceful sleep. He occasionally asks for a glass of his familiar warm honey water, or shifts his legs. He’s found a fairly comfortable position with his knees over the triangular “Nautica” pillow I bought years ago at a discount home furnishings store.

            He sleeps with his glasses on. It looks uncomfortable: for me part of the pleasure of sleep is taking my glasses off and completely relaxing. But David has a different relationship with his glasses; he’s not comfortable unless he knows where they are; he can’t see without them.

            Yesterday, as I sat with him, he looked up above the doorway at the corner of the room, frowned, and said, impatient and annoyed, “Could somebody get the balloons out of here?”

            He spoke so confidently and looked so intently that I immediately turned, fully expecting to see some brightly colored objects near the doorway. But there was nothing but empty wall and ceiling.

            “I don’t see any balloons,” I said apologetically.

            “Well, I do.” And with that the conversation ended.

            Annie arrived home on Monday, around 11 p.m. after flying halfway around the world from Beijing. David had asked about her a few times and I sensed he was holding on to see her. However, that was sixty hours ago. Matt arrived Saturday, his car full of personal belongings he’ll need in the next few weeks. He’ll return to Chicago to empty his storage unit later.

            David doesn’t seem to be in pain, unless he tries to move or sit up. It’s quiet now, no noise except the floor fan humming and his steady breathing.

High White Blood Cell Counts

            It’s been over a week since I last wrote. From Saturday through Wednesday (Aug 1 through Aug 5), there was, as my mother would say, ‘nothing to write home about’. The Monday counts showed the white blood cell count rising from the low 1s to 8.29: concerning, but still low.

            However, the blood draw on Thursday, Aug 6, revealed that the counts had sky-rocketed to 130. For some people that would be a lethal level. However, as I’ve learned, leukemia is an old person’s disease. I had only ever heard of childhood leukemia, and it does accounts for 1 out of 3 childhood cancers, but it is rare. So, since most leukemia patients are older and less fit than David was at the start of his illness (he was an active Army medic), there are a lot of unknowns in his case. Well, one major unknown: how long he has to live.

            It’s Sunday, Aug 9^th now, and I’m still trying to adjust to the sudden change in his outlook. Sam arrived Saturday morning for a weekend visit from California; he had not seen David since April 28th. Annie has been able to call frequently from China; she arrives home tomorrow night.

            Last weekend R’el brought our sweet grandson, Andrew, for a four day visit, the first overnight in his two-year-old life. He’s adorable, of course. He repeats everything you say to him, picking up words left and right. He learned the word ‘later’ while he was here. On Sunday afternoon, when he was told it was time to get in the car and go home, he had a melt-down and wailed, “Later!”.

            Unfortunately, but for a happy reason, Peter and Xiomara can’t visit right now. Xiomara is nine months pregnant and can’t risk travelling away from home right now.

Matt arrived by car Saturday afternoon. He has accepted a job  offer at Clark University in Worcester, less than an hour away from Lexington. He will hunt for an apartment and starts work Aug 31^st. Clark experienced a brain drain when some of its faculty moved to University of Chicago: Matt’s move reverses the direction of the brain drain.

Friday night Jim slept on the floor next to David’s hospital bed in the dining room; Saturday night Sam slept on the couch nearby. David has alternated between sleeping and lying quietly awake. He reads The Economist in snatches and continues to sip warmed honey water.

            For weeks David has had throat pain fairly constantly. Two days ago his hip started to hurt. Martin, the weekend hospice nurse thinks it is from lying still too long. It probably won’t go away, but we hope the continuous morphine will take the edge off both pains.

            It’s a peaceful Sabbath day. I’ve started the daily IV pump; Matt is WeChatting with Annie, who leaves China in about six hours; David is dozing.