What I learnt from my mother’s long journey to death
Maggie Wildblood, 75, has been writing for years and has just completed a memoir. She has won a number of short story competitions, and meets regularly with a group of fellow writers to discuss and critique each others’ work.
I say hello, though I can’t tell if you’re awake or asleep. You’re lying on your side in the bed, eyes tightly closed. You’re my mother, 88-years-old, and you’re curled up like a tiny child, hugging yourself. Your once-beautiful hands are like claws; your knees are bent. Is this ultimate withdrawal? Perhaps you’ve retreated to far from the world you’re at your own beginning, or as close as you can get to it.
I say hello again. Looking down at you I wonder if I will become like this, like you. Am I looking at my own ending?
My mother was 84 when she had a stroke, 88 when she died. A woman who loved to talk, the stroke left her speechless, her greatest fear. Oh, she could speak, but what she said made no sense, and she knew it. She knew the words coming out of her mouth were gibberish. She used to beat the arms of her chair in frustration.
One day a friend, matron of a small hospital, asked if I intended visiting my mother daily for the rest of her life. “You know, Maggie, you’re setting up expectations – for your mother, for the staff wherever she ends up. You should think about that. When she moves out of the big hospital, that’s the time you could start afresh. Begin the way you can continue for as long as needed.” Food for thought indeed!
Left: Born in 1907, my mother would have been two or three years old in this picture. Right: My mother around the age of 13.
When my mother was transferred to a rehabilitation facility I decided I would visit her less frequently. That’s why I didn’t know about her hunger strike, though I don’t know why the staff didn’t tell me about it. On one visit I walked into her room to find her in bed, grey and drawn, not acknowledging me. Staff told me she was refusing to eat or drink. Attempts to insert a naso-gastric tube had gone horribly wrong, the tube going down her trachea. She was taken back to hospital where the tube was successfully inserted into her oesophagus, under x-ray. Back at rehab she was ‘fed’ through that tube. It reminded me of the force-feeding of suffragettes…
So on this particular sunny Sunday, after I’d been told about the hunger strike and the force-feeding, I found her dressed and in a wheelchair in her room. We went outside into the gardens and I pushed her around, chattering wildly about the birds, the flowers, the weather. Suddenly frustration overwhelmed me. I put on the brake.
“How can you do this? How can you be so silly? Don’t you realise they’ll never let you kill yourself? If you thought the naso-gastric tube was terrible, it was nothing, nothing at all compared to the next trick they have up their sleeve! They say you’re depressed and of course you are. Who wouldn’t be when they can’t talk or walk? But they want me to give my permission for you to have electroconvulsive therapy (ECT) treatment! Is that what you want? They say depression like yours responds very well to ECT and you wouldn’t need more than eight or twelve sessions!”
I was almost shouting at her. I knew she wouldn’t speak. I knew she wanted to die because she’d told me often there would be nothing worse than being unable to talk. All I wanted from her was an acknowledgement: a shrug, a head movement, anything to show she understood what I was saying, that she realised what a terrifying prospect lay ahead. I felt so helpless, faced with her small, frail self sitting in that wheelchair while she looked away from me, towards the garden but, I suspected, not really seeing it.
“Mother, for heaven’s sake – wake up to yourself! I’ve refused permission of course, but they say they’ll override me, apply to the Guardianship Board. You must start trying to eat and drink properly, to walk, to talk. You must!”
I had moved in front of her, blocking her view of the garden. She just sat and looked at me. Releasing the brake, I grabbed the handles of the chair and took her back to her room. I was ashamed of my outburst and angry with myself because of it; angry with her for giving up; angry with the medical and nursing staff who treated her, my mother, as a ’case’, a problem to be fixed and then sent off; angry with the world. I left her in the middle of the room, drove home, and wept.
This is my mother in 1965 signing the register for her third marriage!
Perhaps my tirade had some effect. Eventually my mother walked again, well enough to try several times to run away from the nursing home where she spent the last four years of her life. Despite the efforts of speech therapists, she was never able to have conversations again, only to repeat meaningless phrases over and over. Her frustration at being unable to communicate became so intense she stopped talking altogether.
I watched her as my mother shrank, physically and I suppose mentally, though it’s difficult to tell with someone who doesn’t speak. Following multiple admissions to hospital for pneumonia, I was told I could write to her GP saying I wanted ‘no more active treatment’ for my mother. I wrote the letter, feeling both relief and horror. And resentment.
My mother had a long journey to her death.
I don’t want a death like my mother’s. I don’t want my daughter to have to go through what I did. I want to be able to choose the time and place of my dying.
Is that too much to ask?
If you have a story to share please get in touch at melody@oversixty.com.au
Related links:
Heartbreaking poem illustrates the pain of accepting death
Why we need to talk about death
16 things I would want, if I get dementia