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Raymond's Story: Palliative care for Maureen
 





I want to share with you the extraordinary role that palliative care played in the last four weeks of the life of my sister, Maureen. But in order to do that, I feel it is necessary for you to understand the context of her life and preparation for death.

About a month before Maureen was confined to bed with her advanced case of pulmonary fibrosis, she was walking back to her room, very slowly, slightly bent over. She was living in the Convent of the Sacred Heart on Spring Garden Road in Halifax, right across the street from the Gardens. The year before, she had celebrated 50 years as a member of the religious order. She was the third of my siblings to contract pulmonary fibrosis; our two older brothers had already died from its punishing trait, a privation of oxygen.
On this particular day, Laurie, her nurse was coming behind, pushing the oxygen cart, when the needs of another sister delayed her for a minute. Maureen arrived at her room first, and when a couple of minutes had passed and her oxygen cart had not yet arrived, she lay down on the floor with a mischievous grin on her face. When the nurse opened the door, Maureen threw up her arms, moaning “oxygen, oxygen.” I don’t think all the nurses thought it was as funny as Maureen did.

That same week I told Maureen on the phone from Winnipeg, with some trepidation, that I thought I had a great birthday card for her. The front of the card was a picture of a setting sun, surrounded by yellow, pink and white clouds. The text read: “On this your birthday I have a special message for you from God.” When one opened the card, it read: “see you soon!” Maureen thought it was hilarious. She asked me to repeat it over the phone three times. When a nurse came into her room, she insisted I read it to her. “Send it to me now,” she said, “I don’t think I’ll be around for my birthday” (July 16th). In fact, she died July 9th.

The weeks past, and she was getting out of bed less and less. I was retired, so I flew to Halifax to be with her for what turned out to be the last six weeks. My wife, Charlene, came one week after me. As I sat by her bedside, she decided upon the readings and the songs for her funeral liturgy. Then one day she said to Charlene: “Now I have to decide what I will wear for my funeral. Charlene went to her closet and after showing Maureen several options, Maureen made her decision. “Now I need a second outfit,” Maureen added, “I can’t possibly wear the same thing for the viewing of the body and the funeral.” “But Maureen,” Charlene responded very tentatively, “I don’t think you can do that. The beautician and the mortician would have to return.” Maureen giggled as she was wont to do, quite pleased with herself that she had tricked Charlene into thinking she was serious.

As far back as I can remember Maureen had always wanted to be a nun. From early childhood, she had a sense of spirituality about her. We were a very Catholic family. We went to Mass on Sunday, and over Sunday breakfast we often talked about Father MacCauley, our pastor, and his sermons. We entertained priests for dinner in our home, we took the sisters who taught in our school for Sunday drives. Dad was a Knight of Columbus, and Mom was always sending clothes to missionaries up North in Aboriginal communities, or pouring tea at Eaton’s downtown to raise money for Catholic charities. Mom and Dad drove wives and girlfriends to Stony Mountain prison to visit the inmates. The religious life of our family was not an “add-on” it was like a pattern woven into a sweater. It was simply part of our lives, like eating, sleeping, going to school or work; it was part of living.

But Maureen was spiritual in another way. There was a certain aura of prayer about her. One had the sense that Christ, the Father, the Holy Spirit were persons to whom she spoke. That does not mean it was all consolation. She suffered a great deal of depression for several years at one particular period in her life. But she embraced it, learned from it, and became a better counselor.

She was a wonderful spiritual director. In a way, she was a paradox—while little things bothered her, the big things did not. She didn’t judge people and she possessed, and displayed enormous empathy for others. Furthermore, the depth and authenticity of her own spiritual life inspired people, as did her contagious simplicity in the way she wanted to address and cope with very complex secular and church events. I think she was both naïve and wise. These traits made people comfortable in speaking to her and laying open their lives. Those who knew her will recall how much she loved to have fun.

Maureen truly suffered in her last months. While she was at peace in the depths of her soul, the surface waters were churning at times, battling storms of doubt occasionally, but more frequently facing panic as she sought the most simple thing in life—air to breathe.

It was at this time that palliative care entered her life. She had been receiving excellent nursing care in the convent, which was a designated facility for all the sisters in her community in Canada who were dying. The nurses were marvelous. They fulfilled their tasks with such obvious love, attention, compassion and skill.

But as Maureen approached death her needs changed. She no longer needed to go through the excruciating discomfort of getting out of bed to go to the bathroom, simply to keep active. She was dying and she knew it. She didn’t need efforts to keep her alive, to prolong her life. I don’t know what led her to ask her doctor for palliative care, -- it may have been the very positive experience of palliative care that our brother John had at the Riverview Health Centre in Winnipeg. But as soon as the Halifax Palliative Care team, led by Barbara Stewart, came on the scene, there was a change in Maureen’s disposition. She could rest in bed without feeling guilty about “giving up.” She could receive carefully regulated doses of morphine that cut her panic; she could be assured, over and over, that she would not suddenly suffocate at the end. The change might seem subtle, but it was real and dramatic in its consequences. What she needed and wanted, and what they provided, was for her to be physically comfortable, to prepare for death in as much peace as was possible.

Maureen remained courageous. As my brother John, who was a priest, had said eight years before as he was dying of the same disease, Maureen repeated: “I can’t pray anymore; now it is a matter of trust.”
But I could lead her in prayer. We prayed the Lamentations together:
It is good to put one’s face in the dust and wait. The mercies of the Lord last forever. My portion is Yahweh says my soul, and so I will hope in him. (Lam. 3)
We prayed the Psalms:
In your loving kindness, answer me, Yahweh, In your great tenderness turn to me; do not hide your face from your servant, quick, I am in trouble, answer me (Ps. 69).

In her last two weeks we focused more on the glories of God. Several times I read to her a text from St. Paul, one of many that she had underlined in her Bible, and which mirrored her own ministry.
I want you to be happy, always happy in the Lord. I repeat, what I want is your happiness. Let your tolerance be evident to everyone. The Lord is very near. There is no need to worry, but if there is anything you need, pray for it, asking God for it with prayer and thanksgiving, and that peace of God, which is so much greater than we can understand, will guard your hearts and your thoughts in Christ Jesus (Phil:4:4-7)

Despite the privilege of these profound religious moments with my sister, Maureen’s death was the most difficult I have ever experienced. She had a degree of faith and spiritual strength that I lack. Yet I was the one consoling her! It is a mystery to me that the night before she died, she had a half hour of fear and intense sense of abandonment by God. It recalled to me the excruciating cry of Christ on the cross, “Father, why have you abandoned me?” I quietly spoke the words of scripture to her that I knew were special to her. She turned her face toward me and quietly said: “You’ll never know, Raymond, how helpful you have been.” Those were her last words to me.

I am totally convinced that it was the palliative care that Maureen received that allowed her to face her death focused on the things that mattered to her in life. She was not in physical pain. Her spiritual panic may be been even more severe – that I cannot judge- but the efforts to make her physically comfortable allowed her to focus on her spiritual needs. The little physical comfort that came through the palliative approach to nursing was one of the most precious gifts she could have received at the end of her life. I only hope I can be as fortunate.

Raymond F. Currie
Winnipeg

This text has been incorporated as a part of Chapter 9, "Living With the Dying of Others," from Raymond F. Currie's autobiography, "Secure and Uncertain: A Father's Story," Anderson House Publishers, 2008.