My mother, pictured above in a newspaper article with the Duchess of Kent, died 12 years ago today. She was not “lucky”, as my Dad had been 9 years previously; it was not sudden, and she did suffer.
For some years, Mum had been troubled by various mysterious ailments; she had a bad fall coming down the stairs from which her stiff old bones didn’t seem to recover. She was starting to have difficulty walking, even with her morning stroll to the newsagent 2 streets away to pick up the Guardian (she refused to have it delivered so that she always got at least this much daily exercise). Mealtimes were increasingly exasperating for her, as her hands refused to co-operate, suddenly seizing up and dropping cutlery. Doctors lazily put her symptoms down to “old age” until she was eventually sent to Atkinson Morley hospital for some tests. Shortly before her 78th birthday, we all gathered there together to hear the results. It wasn’t “just old age” after all. Mum had motor neurone disease. She would gradually lose control of all of her muscles, becoming slowly paralysed for months or maybe a year or two at most, then she would die. There was no cure. She faced a long, slow, living death.
This is a terrible diagnosis for anyone, but especially devastating for someone as independent and strong as my Mum. She dedicated her life to helping other people, even at the age of 78 still driving “the old people” to their hospital appointments and throwing herself with gusto into charity work. It was unthinkable to her that she might become helpless, unable to look after herself and dependent on others. She took in this news with characteristic stoicism. She simply seemed to accept it with quiet dignity, and carried on with her life. Her only complaint in those final months was “I feel so useless”.
She certainly was not “useless”. She continued to give more to society than many people with no such disability. Since my Dad’s death she had thrown herself into charity work, especially fundraising for Macmillan Cancer Relief. She had lost several people to cancer, including her 2 best friends, one of whom, my “Auntie Peggy,” she cared for in our home in her final days. Mum didn’t want Peggy to die alone in a hospice, so took her in and cared for her, with the help of a Macmillan nurse at the very end. I think this is why Mum chose Macmillan as her favoured charity, volunteering as secretary of the local branch, raising money at coffee mornings and jumble sales. When her friends at Macmillan heard of her illness, they nominated her to receive a special award for her work, which had helped their branch raise more than £9,000 the previous year. For once Mum allowed herself to be the centre of attention, going to the award ceremony at Westminster Hall hosted by the Duchess of Kent (and for just this once, overcoming her opposition to the monarchy enough to tolerate meeting one of “them!”) The above newspaper cutting, taken from the local Herald, reports that:
“The prolific fundraiser was modest about her achievements, which were recognised at Westminster Hall, West End, on July 4. The 78-year old said: “I was pleased about the award but accepted it on behalf of all the members of the committee as well as myself. I will carry on fundraising for as long as I can. I value the work of the Macmillan nurses.” …
The group chairwoman Pamela Fernant agreed that Mrs R’s award was well earned. She said “I am absolutely delighted, as Mrs R. really deserves this award. We’re very lucky to have her because she’s always willing to do more than is expected of her. She’s a super lady and a great asset to the group.”
This, for me, is a fitting tribute to my Mum’s life. A few weeks later I was staying with her, as Brother 2, who normally lived there, was away on holiday, visiting our relatives in the Outer Hebrides. The August bank holiday weekend, on which Dad had died so suddenly 9 years ago, was approaching; on Thursday night we did a crossword together, but Mum kept drifting off as if briefly losing consciousness, so I encouraged her to go to bed. She had had a bad fall 2 weeks previously, and since then she kept saying that she could hear someone knocking, on the door or the walls. She said she heard this sound several times that evening; I heard nothing.
The next morning I woke in my old bedroom and looked out of the window, surprised to see her car still parked outside; she was supposed to be taking one of the “old dears” to an early hospital appointment. I went to Mum’s bedroom to find her still deeply asleep, breathing heavily, and I couldn’t wake her. On her doctor’s advice I called an ambulance, and sat holding her hand, talking to her, until they arrived. Her breathing became more laboured until I heard what I knew was her last breath: the “death rattle.” Refusing to accept this I tried mouth to mouth resuscitation until the ambulance arrived, when the paramedics restarted her heart with a defibrilator. In Charing Cross hospital, Mum was put on a life support machine in the intensive care ward. Brother 1 came straight to the hospital when I interrupted his work meeting with my tearful phone call, and we didn’t leave for the next 36 hours. I got hold of Brother 2 via our Hebridean cousin, and he said he’d be on the next plane home.
After a few hours of watching her body being ventilated by the machine, my brother and I realised that our Mum wasn’t coming back. She had already gone from us. A doctor confirmed this: the disease had affected the muscles controlling Mum’s breathing, so she had slipped from sleep into a coma as the oxygen supply to her brain slowed down. The doctor showed little sympathy, urging us to turn off the machine, as if our mother’s life was an inconvenience. We were both adamant that no decision would be taken until our brother could be there with us. It took him over 24 hours to get there, by which time Brother 1 and I had had time for the reality of Mum’s death to sink in. Brother 2 arrived full of hope that she would recover; convincing him of the truth was one of the saddest and hardest things I have ever had to do. Eventually, a couple of hours later, we all sat holding hands around her hospital bed as the machine was switched off, and her automated breathing gradually fell to a peaceful, gentle end. But I know that she really died as I believe she chose to: in her own bed at home, holding my hand. I think that she could have died in her sleep, but held on until someone could be with her at the end; it seemed she was finally able to “let go” when I was there. We had not always had an easy relationship, so I am very, very glad that I was able to do this final thing for my mother.
So, although she wasn’t so “lucky” with her death, she was at least spared the worst effects of this terrible disease. She was active, independent, walking and talking to the end. Hundreds of people attended her funeral, at the same church in which she had married my Dad 49 years earlier. People queued up to pay tribute to her with speeches in which I felt I was meeting my mother, as a person in her own right, for the first time. I wish I had appreciated her more in her lifetime. She was a remarkable woman, of great strength and bravery. 12 years on, I still miss her, and today in her memory I’ve made my usual donation to Macmillan Cancer Support.