Liz Maxwell Forbes sits with her daughter Sheila, who died in hospice in Ontario. (Photo courtesy of Liz Maxwell Forbes)

Liz Maxwell Forbes sits with her daughter Sheila, who died in hospice in Ontario. (Photo courtesy of Liz Maxwell Forbes)

Hospice month: The 4 days of hospice were a gift

I’d never held Sheila when she was born and I needed to hold her as she was dying

Editor’s note: guest author Liz Maxwell Forbes has written this piece for Hospice Month, which falls in the month of May.

By Liz Maxwell Forbes

My daughter Sheila and I were in the bathroom of her hospice room in Newmarket, Ont., when she voiced the thoughts that were crowding my mind.

“You know mum, I was just thinking, you never got to change my diapers when I was a baby. I’ll bet you never thought that you’d be doing it now.” She grinned as she handed me a pair of scissors from the stool beside the toilet.

These diapers weren’t the bulky flannel diapers of 62 years ago that I would have used, these were lacy pullups befitting my gorgeous daughter whose body was now weakened by cancer and partially paralyzed by strokes. I positioned Sheila’s wheelchair in front of the toilet and she grasped the grab bars as I helped her stand. I carefully slipped the scissors under the waist band of her mauve incontinent briefs, sliced them away from her body and dropped them into the waste basket. I gently held her as she painfully and slowly turned to sit on the toilet. Holding back my tears, I left her there momentarily and straightened up her hospital bed, pulling away the blankets to make it easier to help her slip back in.

Glass doors let in the bleak morning light of an Ontario winter. I had flown in from Vancouver Island the night before and slept fitfully on the pull-out bed in Sheila’s hospice room listening to the unaccustomed sounds of her soft snores. Outside the distant fields held a dusting of snow and the bare trees along a stream stood stark against the pale sky. Inside, the room was warm. Brightly coloured blankets spilled over the recliner and across the foot of Sheila’s bed. There were cards and flowers, and fun quotes on the bulletin board in her room. An essential oil diffuser filled the air with soothing scents, music played softly in the background and Sheila’s cell phone pinged constantly. This was the room of a woman who was squeezing every ounce of life from the time she had left.

The memory of that Christmas phone call three years earlier still brought tears.

“Hi mum, I didn’t want to tell you until I knew more but it appears I have metastases bone cancer throughout my body. It is terminal.”

How could this be? I’d already lost her once.

I lost Sheila first when her birth father and I gave her up for adoption. We went our separate ways but celebrated together when we connected with our daughter 35 years later. Now I was losing her again. I didn’t know what to do with the pain, with the grief. I didn’t know where to put it. I couldn’t focus, my energy was all over the place.

What Sheila didn’t tell me on that Christmas phone call was that they only gave her three months to live. But she was determined to live as long as she could, to build her dream home, to marry the man she loved, and to see her adult children settled. She fulfilled those dreams. Two years later I flew out east to their new lakeside home for her 60th birthday. I struggled to hide my sadness at seeing the toll the cancer treatments had taken. She took every experimental or traditional treatment the oncologists offered. But Sheila wouldn’t allow us to wallow. She loved to have fun and resolutely kept the conversations upbeat. Even when she could barely walk, she joined her friends for weekly lunches and euchre games, always with her hair and nails professionally done.

Sheila never said, “why me?” Only, “why not me?”

My next few months back at home in Cowichan were a blur. The almost surety of Sheila dying weighed heavily. I wondered why I didn’t cry and wail? My whole being felt numb and I moved at a sluggish pace around the house. I couldn’t muster up the energy to water my garden or pull a weed. I would pick up a book and put it back down. Nothing, sustained my interest. Apart from talking to Sheila on the phone, my life felt like thick goopy soup.

Three years after that Christmas diagnosis, Sheila’s oncologist told her there was nothing else to be done. The latest immunotherapy hadn’t worked and the cancer which had already taken over her lungs, bones, spine and brain, had moved into her liver. She was on the list for hospice.

“But you still do the daily crosswords,” I said.

“My brain still works mum. It’s the only part of me that does.”

In February of 2019 when Sheila was admitted to hospice, I flew back to Ontario. I’d never held Sheila when she was born and I needed to hold her as she was dying. And that is what we did in those precious four days with each other in hospice. I’d never washed her body nor done her hair. Sheila was biracial and had wild black hair that was a mystery to me, but I put product in it and tried to fix it as we laughed and giggled. I was hopeless. I gently massaged her feet and rubbed lotion on her legs, and we talked, said all the important things that wanted saying and just had fun. Sheila’s appetite was healthy and I wheeled her to the hospice dining room every morning for our coffee and porridge laden with cream and brown sugar and then went back later for coffee and muffins. People looked askance as we sang silly ditties and giggled over manoeuvring her wheelchair. We weren’t sad, it was there underneath, but the gift of those days to really know each other, free of outside interruption, was euphoric. I was a former hospice volunteer in Duncan, B.C. and was at ease with taking cues from the person I was supporting. But this was my daughter who didn’t want any sadness and it was hard to hide the tears.

I knew when I returned home to Cowichan, I would not see her again. But there was peace in that she was calm and had accepted she was drawing to the end of her life. Nothing was left unsaid. We had completed our journey and created the mothering she missed out on when she was a baby. I still harboured angst about leaving her at the hospital when she was born, and to be leaving her again was painful. On my last night with her in hospice, I visualized going to the baby nursery, picking her up, and sleeping with her cuddled to my breasts. Once home, back in the Cowichan Valley, I held baby Sheila in my mind every night before I fell asleep.

Two months later, when Sheila died, I wailed. Deep, guttural wailing that welled up from my depths and didn’t stop.

Those four hospice-days were a gift. My heart was finally whole.

Liz Maxwell Forbes’s publications include

“Finding Sheila” in Somebody’s Child, an anthology of adoption stories, Touchwood 2011

Growing Up Weird, A memoir of an Oak Bay childhood, Osborne Bay Books 2017

River Tales, Stories from My Cowichan Years, Osborne Bay Books 2019