In the ensuing weeks my daily routine was almost entirely focused on the care and comforting of Marlene. I designed an excel spreadsheet to monitor her meds: morning, noon, dinner, bedtime; dexamethasone, Tylenol, hydromorphone, meds for nausea, and for constipation. I had set up a ‘ward’ in the family room so Marlene could be close to the kitchen and the downstairs toilet, and her best companion, the tv, but she preferred to be in her own bedroom. Eventually, she could no longer leave her bedroom. We set up a tv in her room as she could no longer read.
Marlene began receiving visitors. Everyone knew they were coming to say their goodbyes, but Marlene insisted they were just visiting.
“See you later,” she would say when they were leaving. She never cried, but the driveway was full of tears.
After six weeks of increasing deterioration and close monitoring by the palliative care doctor, it finally became apparent I could no longer cope on my own, even with assistance from the neighbours and our close family friend. Marlene could no longer get herself out of the bed. I struggled to get her to the bathroom, and then it became a struggle just to help her onto the commode beside her bed. Lifting her caused severe pain to her aching ribs. I tore a bicep muscle with the effort of lifting the dead weight of her. The provincial health system had proven far too slow in responding with timely home care. By the time they had sent someone to make an assessment, and the equipment or worker arrived two days later, her conditioned had worsened to the point the equipment was no longer adequate to her needs. The solution was for Marlene to be transferred to Hospice.
Marlene was eager to do this. She could see the toll her illness and disability were having on me and she thought that with transfer to a professional care environment she could be more easily lifted to toilet and be washed. And meds managed, and meals provided.
The ambulance arrived; the crew struggled to get her down the stairs in the sitting gurney, then arranged her on to a bed gurney in the hot afternoon sun in the street, the last day of July. After the ambulance drove away and I thanked all the neighbours, I sat on the stairs facing the front door, and sobbed. I wondered what thoughts had gone through Marlene’s mind as she left the house, never to return. She showed no sign of saying goodbye, or even looking back. For her, perhaps, it was about moving on to the next step. I knew I was crying for both of us.
When I was admitted to her room in Hospice, Marlene turned to me and said, “I’ve made a big mistake. They won’t assist me out of this bed as I thought, and I can’t go to the bathroom. Doug, you have to take me home.”
I knew that was no longer possible. I held her hand and soothed her, I assured her that the hospice staff would take very good care of her.
“I know this is not what we expected but it will be alright.”
Marlene was not consoled. She was a lady who always held her own privacy and toilet as paramount. She was a nurse, and clearly understood that while seriously ill patients may get the professional medical care they need they also surrender their dignity, and this was not her wish.
I visited with Marlene every day in hospice. Often I brought Hallelujah with me, mostly as company for me and the staff. We only lived 12 minutes from the west-end hospice and so we could go back and forth, often three times a day. It occurred to me that if Halle were a younger dog she and I could have a career as a therapy dog team.
During her illness Marlene and I had often talked of assisted suicide; her preference was the unreasonable Thelma and Louise strategy. I had postulated carbon monoxide poisoning, sitting in the car in a closed garage with the engine running, together. Assisted death legislation had recently passed but Marlene was no longer competent to meet the requirements of the law. The irony was not lost on me. By the time she was ready to go – a woman who had lived life one day at a time – she had put off the fatal decision to the point she could no longer have her wishes met. I considered the carbon monoxide strategy again but by then she was in too much pain for me to carry her to the car in the garage.
There was a second irony. The hospice movement promote their service as dying naturally. Marlene, as did I, and likely most people, interpreted this phrase as dying with dignity. While the hospice protocol was to provide exceptional personal care – and the staff were wonderful – dying naturally meant exactly that, the body would deteriorate of its own schedule unto death. She got excellent care – changing bedding and bedclothes, and changing diapers and urine bag, washing and turning the patient, bathing her lips and mouth with Biotène to assist against dry mouth, and administering her pain and other meds – but no other intervention. At one point I asked if they were going to insert an intravenous tube for hydration.
“No, we don’t do that here, that is not dying naturally, and really, it only prolongs suffering for a few more weeks.”
I could see the logic of this, but it nevertheless seemed cruel.
I was reminded of conversations I had had with Marlene three years earlier when our journey with cancer first began. She had told me that she didn’t want me there when she died. I had been very upset at this, to which Marlene reminded me, dying was not pretty; it would be a very distressing experience for me and she didn’t want me to have to go through that.
I had asked the Hospice staff when Marlene was admitted how long they expected her to be in their care. Of course no-one could say but one of the wonderful nurses said typically it was two weeks.
Marlene died 2 ½ weeks after she arrived. I wasn’t with her for her last breath.