Janet Penton has penned this story about her mother’s life and death:
Margaret was born during WW1. Her father survived his army service. Margaret married and gave birth to her son just a few years before WW2 started. She spent the war years nursing her dying father having been obliged to evacuate her very young son out of London while awaiting news of her husband who had volunteered for service in the army. (He served in the Kings Royal Rifles and was one of a very few survivors of the Battle of Calais only to be wounded later in North Africa where he had served as a Desert Rat under General Montgomery.)
All 3 of Margaret’s children were born before the advent of the NHS. We were raised with a “down- to-earth” attitude to death and dying – probably as a result of our parents’ wartime experiences.
Mother was widowed in 1978. She spent many years caring for her eldest daughter who had been diagnosed with a mental illness. Margaret had a heart attack aged about 70. At that time she happily benefited by resuscitation and good intensive care treatment in an NHS hospital.
Despite a diagnosis of “heart failure” and the necessity to live on her meagre state widows’ pension, she went on to enjoy an independent life in her own house for many years.
Following the death of her son from cancer in 2006 Margaret’s physical health deteriorated – she very nearly died on the same day as he did.
Margaret would sometimes stop taking some of the prescribed drugs for her “heart failure” due to the side effects. The result was that, rather than hastening her death, as she hoped, she ended up in A&E on a number of occasions. This was often because fluid built up in her chest that had to be drained – an unpleasant and painful procedure.
Sometimes she would end up having to stay on a ward to fight off infections which were treated with antibiotics. She also contracted pneumonia, from which she unexpectedly survived.
The doctors seemed to be anxious that her wishes to remain at home should be encouraged and new arrangements were periodically made via social services for home care. She was reluctant to accept people coming into her home. I can understand why ….. elderly people are often treated in a patronising manner and the “home care experience” in my mother’s case cannot be described as a happy one, one carer even borrowing money from my mother, albeit a small amount.
There were multiple outpatients’ appointments in a large hospital necessitating long and stressful journeys. Eventually the consultant responsible for Margaret’s care recognised the difficulties involved and an arrangement was put in hand for a “heart nurse” to make regular visits to mother at home. This worked for a while; then the visits gradually lessened and stopped.
The struggle to support mother at home where she wanted to die became increasingly difficult. She was almost totally deaf so communication was a problem. Her eyesight was good, however, so she was still able to read the newspaper and do the crossword.
Margaret had become fiercely independent, sometimes rather angry at her predicament and reluctant to accept the fact that it was becoming dangerous for her to be living alone at home. On one occasion I found a pan of boiling oil on the stove in the kitchen …… yes, oil – for cooking chips! …… while mother was sleeping peacefully on the settee in the living room!
One Sunday we visited and found mother up and about and in good spirits. Little did we know that this would be the last occasion we would see her in her own home. Monday morning we got a call saying that mother had just been admitted into A&E following a fall at home. She had apparently slipped on some spilt orange juice on the kitchen floor and had been unable to get up. She had tried to pull herself along the carpet (suffering burns to her very thin and sensitive skin) towards the telephone so that she could call for help, but had been unsuccessful. She spent all night on the floor. (She had refused offers of wearing a helpline.)
The duty carer found her on Monday morning and called an ambulance. We rushed to the hospital where we had to search for her in the large A&E department. She was in such a bad state that I didn’t recognise her at first. Her face was swollen, presumably caused by fluid being collected there, hence our difficulty recognising her. There followed a long stay in hospital and it became obvious that she would never return to her own home.
With the help of social services a vacancy was found in a residential care home. There was not much choice as Mother was thought to be near to the end of her life and the need for a bed was urgent.
The care was poor and I knew from experience that this standard was about “par for the course” for the elderly. Mother, understandably, didn’t want me to complain and I didn’t want to worsen her vulnerable position, especially as she was not expected to live for much longer.
In the event, she was obliged to endure nearly 5 years slowly deteriorating in that home – a place where she didn’t want to be, amongst people she didn’t want to be with.
While she was there she fell and had to have an operation at the age of 98 (!) for a fractured femur – an operation from which the chances of recovery were not good. However, mother once again rose like a Phoenix from the ashes! The hospital seemed to act in undue haste following her recovery from the operation and she quickly found herself back in the same care home. The little mobility which she had enjoyed was now totally lost.
Margaret had to suffer another three years before she eventually died of a respiratory infection just a few hours short of her 101st birthday.
In the last years in her own home, mother had often joked that she was “past her sell-by date”. She didn’t want to live such a long life and was unprepared. I was unable to persuade her to put anything in writing about her end-of-life treatment wishes. I know that she wanted to be left alone to die at home. She mistakenly believed that, when her time came, she would be helped towards a peaceful death by a compassionate doctor, as she had witnessed her father being helped many years ago.
It remains a great sadness that I was unable to help my mother achieve the death she wanted when she wanted it. A change in the law to allow medically assisted death, if that is our choice is, in my opinion, long overdue.
I have now taken positive steps to protect myself from a similar fate by updating my Advance Decision to include a DNACPR order (Do Not Attempt Cardiopulmonary Resuscitation) and can recommend the ADA website for more information on this subject.