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Family

Wendyl Nissen: The painful truth about watching a loved one's decline

Facing the pain of a loved one’s decline is a heartbreaking experience that raises questions about how we end our days.

By Wendyl Nissen
Wendyl's mother passed away on 27 July, 2019, a few weeks after the writing of this piece. "The suffering is over," Wendyl shared. "We are so relieved but also very sad."
I wish my mother was dead. That's something many of us have said at some time or other when our mother has seriously annoyed us – most probably when we were teenagers.
But this time I mean it. I wish Elis Nissen was dead and that we had given her a lovely send-off, with wine, good food and funny speeches.
But she lives.
After having multiple strokes, she is now paralysed, she can't talk, she can't take herself to the toilet, she can't walk.
She also has dementia, so every five minutes she needs to be told all over again that she has had some strokes and this is why she is like this. She's shocked and dismayed, dealing with the sadness all over again.
Wendyl, as a toddler, standing beside her mum.
My mother had a living will and she had told us over and over that if she ever ended up what she termed "a vegetable" we were to kill her and put her out of her misery.
She was a supporter of euthanasia and fully expected us to do what she asked. We always agreed, never really thinking about how that might work. Would we smother her with a pillow? Feed her an overdose of pills? Push her off a cliff? Or course not, because that would be murder.
I have wondered if, when Mum had her first stroke, we should have just put her to bed and let her body get on with it, rather than rushing her off to hospital, where they tried their best to stop the strokes with medication and effectively slowed down what was probably going to happen anyway.
After three weeks, when the stroke unit at Whangarei Hospital had done the best they could – and, believe me, they were wonderful – I hoped they would call time and release her to palliative care. A nice hospice, a gentle wind down, a longed-for death.
But there was a problem. My mother was still eating. Even though she couldn't feed herself, she would eat if someone put a teaspoonful of puréed food in her mouth, like a baby.Under our laws it is illegal not to feed someone, so my mother must live.
When my parents moved in with us up north 18 months ago, it never occurred to me that she wouldn't be cared for by our local facilities. But as I was to find out, there is a crisis of care in the north for people like my mother. The nearest facility had a waiting list of 14, the next nearest had no vacancies.
So my mother lies motionless and confused one hour and 20 minutes drive away, which my old dad does willingly just so he can sit and hold her hand. This is the curse of living in the country. The country where old dogs with less issues than my mother are shot out of kindness. No kindness for my old mum.
As the End of Life Choice Bill crawls painfully towards some sort of result in parliament, I find myself wondering who would oppose this right to die. I understand that some people don't like the idea, but it is a choice. Like abortion. Just because abortion is legal does not mean it's compulsory. Who has the right to take away choice in this life?
During these past few months I have heard from so many friends who have been through exactly what my family is going through. They, too, are unable to understand why, in a society where people no longer die in their 60s but live long lives, our laws cannot do something for the sad, confused, lonely and sick old people in our rest homes who, given the choice, might have preferred to have been allowed to die.
Instead, I visit my mother in her care home, where we have hung her favourite pictures, laid her favourite blankets on the bed and tried to make it look less like a hospital and more like a bedroom. I brush her hair, rub cream into her face and her one working hand and I say I'm sorry.

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