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Marco Cibola

Being there

Stories of illness and companionship

By Various Writers

When it’s time for letting go
By Douglas Tindal

In a span of less than four years, both my parents died. My mother, Ruth Tindal, died in October 2009 at age 89; my father, George Tindal, died in February 2013 at age 94. In both cases, I had the power of attorney for personal care.

My mother had a number of serious medical conditions, including diabetes, high blood pressure and Parkinson’s. Despite this, she played golf into her early 80s and enjoyed an active social life much longer.

Gradually, it dawned on her family that she wasn’t just becoming more eccentric. She was on a long, slow slide into dementia — so gradual that the psychiatric assessment completed just a year before her death from the disease would conclude only that dementia was “probable.”

Over the next few months, the slope became more precipitous. In August 2009, she could still carry on a limited conversation, but a month later her mental capacity had diminished so much that she could make only unintelligible sounds and, a side effect of the dementia, her body had forgotten how to swallow. It was hard to accept that the woman we knew was gone; only the shell remained.

The choice was stark. Either she would be put on a feeding tube and sedatives to keep her from interfering with the tube, or she would die in a matter of days.

Before making a decision, I had lengthy conversations with my father, my brother (there’s just the two of us) and several adult grandchildren. Their support was hugely consoling to me. I interrogated half a dozen health-care professionals about the prognosis and options for treatment. And then I began a phone conversation with the attending physician.

I tried to get some information from him about how to proceed, but he was not forthcoming. I rephrased my questions to make them clearer. He rephrased his answers but made them no more helpful. We went around and around. He seemed determined not to answer.

Finally, my frustration mounting, I gave up any pretense at tact. “Look,” I said — by then I was close to shouting — “my goal is to allow my mother to die with the least possible amount of suffering.”

“Oh,” he said. “Okay then, here’s what we do.”

And he proceeded to give the clear answers he’d been avoiding until then. Until he heard me clearly say that I had made a decision, he wasn’t going to influence me — or let me off the hook.

My father was at my mother’s side as constantly as possible during her final days. She slipped away, as I’m told often happens, when his back was turned just for a moment.

My father’s first stroke was Feb. 7, 2013, an annoying interruption to his plans. He’d been agitating with the local school board about what he’d decided was inadequate music instruction, and was so persistent that the board had arranged to send a car and driver to tour him through several local schools to see their music programs. Instead, that morning, an ambulance picked him up.

Family gathered. Summoning all his strength to speak a few words clearly, my father delivered the only coherent sentence I would hear him speak in those first few days: “If it’s time to let me go, let me go.” The thing seemed decided. We said our goodbyes.

Then over the next several days, he rallied. He regained much of his speech and some movement. He started to take solid food. He was soon speaking clearly enough to become demanding (as usual!), such as dispatching a granddaughter to his retirement home to get his electric shaver. Dying or not, he had standards.

My father was quietly estranged from his church for much of his adult life, but when the chaplain from the hospital’s palliative care team visited, he was glad to receive prayer. On other occasions, he requested prayer from a family member, which seemed to console everyone involved.

During his two-and-a-half weeks in hospital, my father had at least one visitor most afternoons and evenings, and every visit produced an e-mailed report to the rest of the family. I was calling in to the nurse’s station each morning for a status report and then e-mailing it to the family.

We thought he was headed for recovery, but then another stroke intervened and left him more incapacitated and much frailer than before. Doctors and nurses had already been asking for instruction on a “do not resuscitate” (DNR) order. They were just doing their job, but it felt aggressive. After the second stroke, the demand intensified.

I wanted to wait and see. After all, I’d watched him make a substantial recovery from the first stroke. What was to stop him from doing it again?

“Oh,” said one doctor in response. “He’s done.” I’m still not sure whether that was as shockingly insensitive as it sounded at the time, or whether it may have been a well-meant attempt to speak an unpleasant truth.

But the vital point of a DNR order — and the thing that may be hardest to accept if you’re the decision maker — is that you can’t wait until the need arises. You have to make an irrevocable decision before it’s needed. If a patient’s heart or breathing stops and no DNR order is in place, the time for decision is past. A monitor sounds an alarm. The attending nurse “calls the code.” Medical staff come running from every corner of the hospital to begin the resuscitation procedure. (I saw it happen for someone else, while at my father’s bedside.) There are no opportunities to stop and assess.

The resuscitation process, especially for the elderly, is like an all-out assault. “On a 94-year-old,” another doctor told me, “it’s vicious. We’ll break ribs doing the chest compression. We’ll probably bruise organs, maybe puncture a lung. We can bring him around, but he’ll never recover from the procedure.”

By this point, my father had no speech, but he was still alert and responsive. So I asked him: “A couple of weeks ago, you told us, ‘If it’s time to let me go, let me go.’” He nodded. “If your heart or breathing stops in the next few days, should we let you go?” Only a short pause, and he looked me in the eye and nodded again. All these months later, it’s still hard to write.

Was it a blessing that I was able to ask him — or a burden I shouldn’t have placed on him? Was I right to be guided by his response? If he’d said no to the DNR order, should I have refused to authorize it, no matter how much additional suffering it might cause him?

As it happened, there were seven of us making staggered visits on the day when my father gave a nod to the DNR, although he and I were alone at the time. I went to the nurse’s station, gave the order and watched as it was recorded. Then we all went to a restaurant for lunch, the first break we’d taken together during the days of vigil, and I told them, somewhat haltingly, what I’d done and why. We shared some tears. They gave me tight hugs and words of support. It is beyond my power to adequately express my gratitude. I was the one person ultimately responsible for the decision, but as family, we were in it together.

As I look back on the choices I had to make, five lessons about carrying the responsibility for end-of-life decisions emerge. For those who have yet to experience the death of a parent or close relative, here’s what I have learned:

1. If you have the power of attorney, only you can make the hard decisions. No one else can share your responsibility for an end-of-life decision. No matter how much information gathering and consulting you do, no matter how much support you may receive from loved ones, you ultimately stand alone.

2. Understand that you’ll never be ready for some of these decisions — and you’ll never have enough information to make them. All a person can do, I believe, is be guided by love and make the best possible decisions in the moment.

3. Stay in touch with loved ones. Share information. Be open about your decision-making. No one can decide for you, but you can still be together in the process: alone, but not isolated.

4. Make room for spirit, however you experience it. As death approaches, believers and non-believers alike find comfort in something that transcends this life, whether it’s God, a community legacy, or the love and memories they leave among friends and family.

5. Making end-of-life decisions is hard, but not having someone able to make them is worse. If you have aging relatives, urge them to establish a power of attorney for personal care. While you’re at it, assign a power of attorney for yourself. You may need it sooner than you think.

Douglas Tindal is a writer in Toronto.

Companions on a road not chosen
By Nancy Wyse

It was his walk that first alerted me that something was amiss. My husband, Simon Nankivell, had canoed many lakes and rivers in the B.C. interior, and climbed many slippery shale slopes. Now he was struggling to navigate sidewalk curbs.

We had both been hit by a nasty flu virus in the summer of 2009, but his recovery was slow and left deficits that did not improve. His gait was stiff, his arm swing non-existent and his balance compromised. I observed these things and commented, but we both felt his difficulties were tied to slow recuperation from the virus and a medication that had not agreed with him. We watched and waited, but improvements did not come. If anything, the jerky, frozen movements got worse.

That autumn, my brother, a physician who had been visiting with us, responded to my queries: “I’m not a neurologist, Nancy, but I’d check into the possibility of Parkinson’s disease.” It was a full two years before we had a confirmation that my brother was right.

Parkinson’s is the kind of disease that doesn’t make itself known through a single blood test or biopsy. Other culprits must be eliminated first — brain tumour in the cerebral cortex, mild stroke affecting the left hemisphere — like playing a deadly game of Clue. On the day of the diagnosis, our neurologist said, “Trust me, of the variety of neurological diseases that are out there, if you have to have one, Parkinson’s disease is the one you want.”

But I didn’t want it. In the dark recesses of my thoughts, I carried the image of a shuffling, shaking old man. It wasn’t an image I wanted to experience in the light of day. I wanted to go to Spain and sip sangria as I listened to my husband converse with the villagers in his fluent Spanish. I wanted to explore the wonderful corners of England, Simon’s birth land, taking in its museums and galleries. I wanted to run along beaches and fly kites with our growing, giggling grandchildren. I wanted the couples’ retirement of the glossy ads — not the dismal unknowns of debilitating illness. However, here we were. And we needed to prepare ourselves for more and for worse.

How does one do that? For me, it began with framing. Rather than trying to grasp the overwhelming big picture, I framed a small corner and focused on the gifts within that frame. It was an exercise in gratitude. As Bill Millar wrote in the March 2013 Observer, “Choose gratitude and, for whatever reason, fear dissipates, dissolves.” I focused on the many small gifts of our life together: home, clean water, four children creating their own homes and families in safety and peace, and our loving and supportive relationship. Even things like my red teapot or an old letter from my mom conjured support. And our caring network of family, friends and church community overflowed my frame.

Simon and I also talked about the tough stuff: mobility issues, dementia and the loss of his sense of self. As we spoke, I felt I was inside an echo chamber, the reality of our situation bouncing off and bruising everything we’d known. This was it. This would be our life. The support we felt was both tangible and intangible. But at the close of the day — shutting the door, drawing the curtains — this was ours to face.

I understand that I have choices in my life that will determine much. I also know things happen that I do not choose, things I cannot argue or cajole away. Simon’s illness is one of those deep, impactful things that has changed our lives forever.

But we have life. That beacon clearly flashes. Simon reminds me of this daily with his good humour and tenacious attitude. And on this path, the gates of holiness are open wide. It is the paradox of strength found in vulnerability that I find most amazing. I am joined on this path by hosts who have tread the ways of hardship and prevailed to find joy. Biblical, historical and family stories abound with saints whose words and ways sustain me. I have from the lips of those saints, “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me” (Psalm 23:4). And I am full of gratitude.

Nancy Wyse is a retired teacher in Penticton, B.C.

Sailing the unknown ocean
By Rika Vander Laan

She swept her hand in an elegant motion that I had seen many times these last months. I learned to understand it as, “I need to go to a quiet place just now; let me be.” It was Sunday, Aug. 18, 2013, at 11:25 p.m. The circumstances were far from ideal. Yet, in that gesture, she told all who had borne witness that her journey was done.

My relationship with Janina Wesenhagen began 34 years previously. As work colleagues, we had a unique connection. We talked about our hopes and dreams, our pain and disappointments, and our joys. We developed a love between friends that is precious.

A bit of a wanderer, Janina had been living in Nova Scotia since 2002. Five months after moving to Annapolis Royal to be closer to a community, she was diagnosed with pancreatic cancer. Surgery followed two months later, delivering a stark reality check: metastases and a prognosis of three to six months. She beat the odds and lived another 14 months.

The course of her living with dying was like being on an unknown ocean. Waves and winds of incredible force alternated unpredictably with gentle breezes, intense sunshine sparkling on a soft, rippling surface. Our ship rocked with the gusts and glided wondrously in restful waters.

The light of life shone in her being. She talked about how things might progress, how she wanted to die and how she wanted to live until she died. Her openness and clarity were an incredible gift.

Janina named me and my nephew Paul De Jong, who had also become a dear friend of hers over the years, as her powers of attorney and executors. Although it’s unusual to name a non-family member, I wasn’t surprised. Many of Janina’s immediate family members had died, and her circumstances were such that, in a real sense, we were her family. Our deepest desire was for her to make her own decisions until that was impossible and then to honour her wishes.

During those early months, Janina was our captain; we took her lead as we made our way through brutal storms. We acquired new skills, drew on the experience of those who had been here before, and engaged medical professionals, friends and the community to help us stay on course. Riding the waves is not a one-person task. I was aware of God’s presence in every moment.

Paul and I both live in Toronto, so much of our support happened over the phone and during visits. Janina was on a mission to put things in place and to focus on living; our role was to support her. When we were together, we did what needed doing related to the “death work,” as we named it, and then settled into enjoying life together. We could almost forget she was dying.

I struggled to continue living my own life. Each time I booked a vacation, committed to a project, scheduled an event, I’d think, “What if she needs me?” I learned to trust that there would always be a way to be there for her. She did not want me to put life on hold.

Last August, she declared, “I am done.” Paul and I travelled to Nova Scotia again. We moved a hospital bed into her living room and set up the medical equipment and supplies in her bedroom. Friends gathered. Janina talked about living, dying, the wonders of relationships. We reminisced, we cried, we laughed.

Just after noon on a Sunday, an intense pain seized her body. Ten hours of trying to use terminal sedation to control her suffering was not working. We felt abandoned and at a loss. In consultation with the palliative care team and with Janina, we made the difficult decision to go to the hospital, praying for medical intervention to relieve her anguish. And so it came to be, in the ambulance, 10 minutes from the hospital, that she swept her hand in that elegant motion and left us. My heart was broken, not so much that she died, but that those final 11 hours had to be so hard.

For Janina, the storm was past. With some distance and time, I’ve realized that her death was not about those final 11 hours; it was about all of the experiences, conversations and interactions in the final months she had, we had together. The life, the joy, the sadness, the struggles, the peace: it was a miraculous journey that I never could have imagined. For that, I am grateful.

Rika Vander Laan is a health-care consultant in Toronto.

A pilgrim comes home
By Frank Dabbs

When her breast-cancer pilgrimage entered its palliative care stage, my wife, Florence Murphy-Dabbs, decided to die at home in the comfort of our parlour in rural Annan, Ont. This decision brought me immense peace as her husband and primary caregiver, and defined our last weeks together.

Dying, when it occurs over weeks or months, has a singular advantage over sudden death. It gave us, as a couple, the opportunity to face Florence’s death together, to prepare for it, and to prepare for two lives after — one eternal and one temporal.

We talked and read and talked more. Family and friends from across the continent visited, texted, e-mailed or phoned. Our minister gave her communion. Her iPad became her source of reading, music and meditation. Her cancer quilt became her “blankie,” a gift from friends in Alberta who formed a prayer group after she was diagnosed. The group met, often by conference call, each time she had chemotherapy and radiation treatments.

I hung a painting of Lake McArthur in Yoho Park, B.C., at her feet because we decided together, after considering options, to immerse her ashes there.

She asked me to buy Christopher Hitchens’s Mortality and read again Billy Graham’s Nearing Home. She thought, like the corporate executive she had been before retirement, that she should know different points of view on death and dying.

She asked family to make sure I did not become a hermit, retreating into myself after she died.

Before she moved to the parlour, we travelled one last time to Florida. On the trip, she was weary in a way I cannot hope to understand. However, she insisted on one adventure each day — lunch, an hour in Starbucks, shopping, sightseeing, watching the birds in the Gulf of Mexico, and browsing the gardens and flowers like others might peruse a bookstore. An egret adopted us and waited for us each morning on the patio of our condo, just as eight cardinals came in shifts to the windows of our Annan sunroom throughout Florence’s final winter.

These are things we shared, and sharing became the essence of the experience for me. I shared even in her death, as closely as possible.

When we had lived in Alberta, each spring we went out while there was yet snow to pick crocuses as she had done since her childhood on the family farm near Hanna.

The day before her death, I went into her garden at Annan and picked a spring crocus from the beds that she had planted. I placed it with a snowdrop in a crystal vase on her bedside table. She thanked me and slipped into a coma.

Florence and I did not face the monumental experience of her death alone. Through life, she created networks of friends, proteges and colleagues. She lived her life founded on a New Testament ideal of love — joyful, patient, kind, selfless, sacrificial and giving.

In her last hours, those family members and friends who gathered around her in the parlour knew that, as on the Emmaus road, there was another presence among us. She died as we had breakfast beside her, telling Florence stories, chuckling about her family episodes.

We survivors need to be careful not to put words into the mouths of our dead spouses, especially to give ourselves spiritual comfort. Fortunately, Florence kept a journal. In it, she reflected, “God did not exempt me from cancer because I am a good person. But God prepared me for this journey and is with me every step of the way.”

She also wrote poems in the journal about her cancer pilgrimage, leaving them to be found posthumously, like Emily Dickinson had done. I published several in a booklet for her funeral in Calgary.

Hundreds of friends, cancer patients, hospice families and medical caregivers have since heard in them her gentle, comforting voice. In one, she prays for herself and for me:

Dear God,

Guide me in understanding

the way to move forward,

and not to add despair

but bring strength to both of us.

Florence also wrote, “I do not know what heaven is like, but I’m curious . . .” Those of us with her at the hour of her death witnessed the serenity, dignity and peacefulness of her departure for it.

Frank Dabbs is a journalist in Annan, Ont.

Sidebar: Five things I learned about ministry when I had cancer
By Michael Webster

I have always been healthy. My wife, Debbie, who is a nurse, warned me that if I ever did get sick, I would be a terrible patient. She said that I had no patience with being unhealthy, and no practice at it either. People who have been sick know what it’s all about, she said. People like me make the worst patients.

Then, last year, I did get sick. Symptoms. Biopsy. Cancer. Surgery. Two months off work and another month working part-time. Through it all, I was a model patient — good-natured, optimistic, pleasant in every way. At least that’s how I remember it.

Okay, maybe I got discouraged a couple of times, maybe even a little short-tempered now and then. The first couple of weeks post-op were the best. My expectations were low, and I could see my progress — walk to the end of the driveway one day, then to the telephone pole, then to the end of the block. After that, my expectations sped up, but my progress didn’t.

I got dozens of get-well cards, but one stood out. On the front, it said, “Recovery is a process. It takes time . . . it takes patience . . . it takes everything you’ve got.” Those words became my mantra. I repeated them several times a day, but truth be told, I never did learn patience.

What I did learn was what it’s like to be sick. And in my first experience of being the pastoral visitee instead of the pastoral visitor, these are the five things I learned about ministry.

1. Prayer matters. I have never been so prayed for and prayed over in my life. Presbytery executive laid hands on me and prayed. My congregation prayed for me on Sunday mornings. And of course, most of my visitors in the hospital prayed for me as well. Overall, I found it to be a powerful and deeply spiritual experience.

Like a lot of United Church folks, I don’t believe that prayer changes God’s mind about how the universe ought to unfold. I do believe prayer has the power to effect change, that it is a precious gift from our Creator, and that we have hardly any idea how it works or how to use it.

As a minister, though, I have not always acted as though I believe in prayer. Sometimes when I visited someone, I would feel uncomfortable offering a prayer. I took my own discomfort as a signal that the person didn’t really want a prayer. Baloney! That discomfort says more about me than it does about them. And for crying out loud, I’m their minister — they expect a prayer. Prayer changes the whole tenor of a visit. Whether or not they want me to pray for them, they expect me to ask.

2. All pastoral prayers are too long. I know what it’s like. It’s the end of a pastoral visit, and it’s time for a prayer. Sometimes I ask, “What shall we pray for?” Judging by their expression, some people consider this a dumb question, but for others, it leads to a meaningful discussion. Often, I just say a prayer that tries to cover all the bases. I’ll never do that again.

As I lay in my hospital bed, helpless, drugged and in pain, every prayer I received seemed to drag on forever. Most of my visitors were other ministers, and I was grateful for their company, but for the most part, they prayed like I did. They gave thanks for this and that — for me and for the beauty of the day, yada, yada — and then asked for a bunch of stuff, but it is hard to remember exactly what because by that time I had already zoned out.

Here’s what I learned: Longer is not better. To the point is better. Heartfelt is better. Three or four brief sentences will do just fine. God will get the idea, and so will the patient.

3. It ain’t over till it’s over. I think I have a pretty good record of making hospital visits. But I’ve done a terrible job of following up once people go home. At some level, I guess I assumed that once patients are discharged, they are no longer in crisis.

I now know that getting home from the hospital can be just the beginning of one’s struggles, that recovery is the hardest thing of all, that it is a process . . . it takes time . . . it takes patience . . . it takes everything you’ve got. And that includes ongoing pastoral care from your minister.

4. Humility stinks. Okay, so I didn’t learn much about patience, but I sure rose a few points on the humble meter. And not just because I was at the mercy of nurses examining parts of me I usually keep covered up. I also realized how blessed I am to live in a country that provides first-rate medical care without eviscerating my savings. That was just the beginning.

Like a lot of caregivers, I find it fulfilling to show compassion to others but difficult to be on the receiving end of kindness. I would rather pull out my fingernails than admit I need somebody’s help. The Bible’s word for that attitude is pride.

Cancer gave me many opportunities to practise humility. Friends and parishioners gave us rides and offered to sit with Debbie during my surgery. A neighbour rototilled our garden. Later, another cleared the snow off our driveway. I haven’t come close to getting rid of that pride of self-sufficiency, but I learned to ease my squirming discomfort and accept with reasonably good grace the kindnesses that were offered.

5. I’m humble, but I’m also important. I often say that ministry is a lot like farming, only it’s all seeding and no harvesting; that is, clergy rarely get to see the results of their work. That’s true enough, but it ignores the fact that, as a minister, I am a character in people’s life stories. Long after I am gone, they will remember me as the minister who did the baptism or the funeral or who said something that helped them or challenged them or, God forbid, hurt them. In the same way that I can remember all my grade school teachers, I remember all my ministers, and so I will be remembered too.

That’s easy to forget when, as one of my professors used to say, “the Sundays start coming at you like telephone poles.” But tell a congregation that you’ve got cancer, and you begin to be reminded that ministry is not only an awesome responsibility but also an awesome privilege. Cancer is not a learning experience I recommend, but it certainly is an effective one.

Michael Webster is in team ministry at St. Martin’s United in Saskatoon. He is currently cancer free.

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