Most recognize bereavement as deep sadness following the  loss  of  a  loved  one.  Another  dimension  of  loss, pre-bereavement, is less acknowledged and understood. This phase commences at the moment a loved one is diag- nosed with a potentially terminal illness.

In my case, pre-bereavement became a feature of life on the day that a routine chest X-ray revealed a tumor in one of Collette’s lungs. She had had TB as a child of 12, and she was monitored regularly as a participant in a Canada-wide survey. She was also a heavy smoker for most of her adult life.

I saw the X-rays. The doctor interpreted them and advised me to have Collette see her doctor the very next day. Collette’s reaction was direct. It’s my own damn fault. She stubbed her cigarette out, and she never smoked again.

The following six month period came and went in a blur. The surgeon removed a large tumor. We waited, in agony, only to be told that there was no possible treatment for that particular type of tumor. Then several smaller tumors were found in both lungs. We went to Toronto to see a specialist. There was some discussion about the possibility of further surgery. Then we confronted the realization that there was, simply, nothing more to be done.

In spite of the fact that Collette received much medical attention in the following years, some things felt normal.

Ironically, she gained some weight. We both managed to enjoy the company of our family. We even played par three golf a couple of times a week. We were happy in each other’s company, wanting to spend as much time together as possible. When I reflect on this time of pre-bereavement, I think of it as both the best and the worst time in our lives together.

Collette was emotionally strong. She did not fear death. She assured me that since she couldn’t live in her body as it was, she didn’t mind dying. That simple statement was the best gift that Collette has ever given me.

Over time, she made it clear that, while she appreciated the efforts of the entire family, she relied on me as primary caregiver. I liked being able to look after her, but as every spousal caregiver knows, this is tough work. Collette, however, was always convinced that I was more than equal to the task. For more than two years, the family did exactly as she wished. We cared for her. Then it became impossible to continue to do so.

Even with amazing support from five children, I found it difficult to leave Collette alone for any length of time. I had no time for myself. It was a challenge even to leave the house for a walk. After two years of non-stop care-giving, I was absolutely exhausted and felt, undeniably, helpless. I knew that it was time to ask for help. I approached Victoria Hospice whose services I had been aware of for some time.

From the first contact with a Hospice intake clerk, I knew that I had made the right choice. I can scarcely remember the actual time spent with this kind person, but I clearly remember the fact that my daughter, Tia, called Hospice moments before my arrival. When I told Collette about Hospice’ services, she realized immediately that we all needed help.

The next day, a Hospice doctor arrived. Our lives changed dramatically. Clearly and compassionately, the doctor described what the future held for our family. She spent a couple of hours with Collette, reviewed her medications, gave detailed instructions about dosage and time, and presented us with a record-keeping book so that nothing would be left to chance. The doctor reassured Collette that she was very good at managing pain.
The doctor took me aside and informed me that I needed to take care of my own health if I wanted to continue helping Collette. Unfortunately, I did not heed the doctor’s advice. I continued to spend all of my time with Collette. I gained nearly 30 pounds. I failed to exercise. I slept poorly. I neglected my own health needs.

Once Hospice became involved, other doctors monitored Collette’s progress. Capital Health Region nurses visited regularly. Time progressed, and while the realization that Collette was moving closer to death was terrible, the family knew that she was receiving the necessary support in a gentle and caring manner. We experienced a deep sense of relief, something that we will treasure for the rest of our lives.

It‘s difficult to imagine how we could have received more support from our family. Most of our children lived in Victoria, and the others had arrived to be with their mother. My sister and two of Collette’s also came to be with us, and dear friends lent their support in many thoughtful ways.

One day, Collette asked that our daughter, Tia, visit. The two of them retreated to the den from which I was subsequently banished. I heard much talk, a great deal of laughter, and now and then, a difference of opinion. The subject of discussion turned out to be Collette’s wish to disperse her possessions amongst her children. At a subsequent family gathering, Tia presented Collette’s gifts, all lovingly selected specifically for each individual family member.
Specific memories of the last week or so of Collette’s life stand out for me. Our sons and daughters never left their mother alone. They talked about their own children and brought them to see their grandmother. They reminisced about the old days and about how much they appreciated those good times. They recounted the little tricks that they played on both Collette and me, tricks about which we were blissfully unaware at the time. When Collette rested, they simply sat quietly.

The night before Collette died, our son, Kim, and I were at her side in the middle of the night. He asked me if I could use a scotch on the rocks. I could. Then I had a brilliant idea. Collette might enjoy a gin and tonic. In response to my question, her eyes popped open, and she nodded. Kim and I proceeded, just hours before her death, to help Collette to savor a final gin and tonic which we delivered, carefully and elegantly, via eyedropper.

Thanks to Hospice care, Collette died in peace, free of pain, in her own home, and with her family at her bedside. Once a family member notified Hospice, a remarkable thing happened. Wendy arrived and asked if she could talk to the grandchildren. Somehow, Wendy made the day’s events seem so natural that the little ones accepted the fact that their grandmother had died but that they would always remember her. Wendy took them up to say their goodbyes. You have no idea how grateful both our children and I were to have Collette’s death explained in such a caring and honest way. Now and then, one of the grandchildren still asks about Wendy. Collette died on a Thursday and because family members had come from a distance, we decided to hold the funeral on the next day. This decision required hasty arrangements with our pastor who, as it turned out, was unable to attend the funeral. A priest who had not known Collette was to say her Funeral Mass. The morning of the funeral, I awoke at five in the morning to the startling realization that I had not asked anyone to write the eulogy.

I wanted Collette’s life to be celebrated, to be shared with those who knew her. I wrote the eulogy and then hurried to the church to place my tribute in the hands of a grateful young priest. The delivery of the eulogy is a time to celebrate a person’s life, and Collette’s life was well honored.

I have often asked myself how we could have received such unbelievable care and support from Hospice. I know, now, that thousands of families have received the same kind of loving assistance. When I sought help, the people at Hospice knew that I was at the end of my physical and emotional resources. There were so many kind and thoughtful things that occurred in the last few days of Collette’s life, but I will never forget the fact that, at the lowest point of my entire life, help was available when I needed it most.

Hospice could not possibly have done anything more for our family. In addition to the gift of a peaceful death for Collette, Hospice staff and volunteers made many timely, quiet, and valuable gestures. Some things stand out. A gentle nurse cut Collette’s toenails a week before she died. A few days before she died, Collette had a stroke and lost her ability to speak. The doctor sat beside her on the bed, speaking gently to her for some time. There was a pause. The doctor said, “You are going to be just fine.” Collette nodded. She fell asleep and went to the special place where she found peace.

How does one give thanks for these moments? Perhaps it is best not to try. I can still remember sitting alone with Collette, saying goodbye, wondering how the special folks at Hospice could possibly find the courage to care for so many people in the realization that, eventually, they must let each one of them go.

Hospice provided a certain kind of assistance during Collette’s illness; that assistance exemplifies the needs of people in a pre-bereavement phase. The experience also reminds those caring for a seriously ill loved one that they must recognize their own need for assistance. This is a difficult recognition for many. Those who don’t seek help cannot be helped.

Bereavement, however, is a lifelong reality, and while the kind of support needs might change, the intensity of the need does not. Over time, the greatest assistance that I have received came from bereaved friends whom I met through Hospice programs and services.

For some, the enormity of loss strips their lives of both purpose and joy. They feel left with nothing. They feel completely alone and isolated even though they may have family, friends, and a lifetime of memories at their disposal.

Bereaved people often express bewilderment at the lack of understanding of the grieving process on the part of both friends and families. Time and time again I hear this refrain: … but they don’t understand.… I am convinced that the bereaved are best equipped to help each other. My purpose in writing this book is to begin a conversation about how that healing assistance might be fostered.