Two hip replacements and major heart surgery gave Joan a good quality of life until her early ’90’s. She lived in an excellent sheltered housing community and had family living locally who gave her support as she needed it. She had many friends and was active in her church.
By July 2013 it was becoming clear that her failing memory was starting to seriously affect her life – she was loosing the ability to remember appointments, write a shopping list, find things in the supermarket, and remember her bank card number. Shortly after this point she fell and dislocated her hip. This event marked the start of her terminal nightmare which lasted over two years. A spell in hospital to reset the hip, and a general anesthetic left her very confused. When she returned to her sheltered flat, she had carers to help 4 times per day. Her worsening dementia, coupled with her strong sense of liking to do things her own way, made this very difficult for her to accept.
Her problems were compounded by a worsening rectal prolapse which gave her periods of extreme pain and discomfort. There were countless GP visits and emergency hospital admissions. Her dementia was getting to the point where she couldn’t retain information about what was happening to her. She didn’t understand who the various people who tried to help her were.
Make them see sense.
She was very unhappy with her situation. On several occasions she asked me to help her end her life. After careful thought, I refused. I didn’t want to risk a prison sentence, but more fundamentally, I don’t believe it is the right approach for an emotionally involved person, like me, without medical training, and no professional experience in dealing with end of life situations – (or murder!), to take the law into their own hands. She asked if there was someone else who could help her. I carefully explained that doctors were not allowed to provide the sort of assistance she was requesting. “Make them see sense” was her response.
Things reached crisis point in November 2013. Her prolapse was causing considerable pain more frequently. One day the community nurse happened to be visiting when Joan’s prolapse was out and causing pain. The nurse attempted to push it back – and failed- causing her agony. The GP was called – he tried and failed – causing her agony again. He arranged for an emergency hospital admission. The hospital doctors were about to try the same procedure again without pain killers. I had to break down in tears to stop them putting my mother through agony for the third time in one day. They gave her morphine and replaced the prolapse. She was admitted as an in-patient.
I returned the next day to find her slumped in a chair, crying, and repeating out loud “I want to go to heaven, I want to go to heaven…” It took me an hour to calm her down. I was furious. Every time my mother was admitted to hospital I made sure that the doctors had her advance decision document which clearly stated that she consented to “any medical treatment to alleviate pain or distress”. It went on to say that she maintained this request even if it would shorten her life. I had naively assumed that this would ensure that she would be given appropriate sedation or whatever it took to keep her out of this kind of distress. I talked to the registrar on duty at the time. He asked me what I wanted him to do. (How did he expect me to know? I’m not a medic!) I referred to her AD and suggested some form of sedation to alleviate her distress. He then spent a long time explaining to me that he could not prescribe sedation as “BMA guidelines say that is only for those who are a danger to themselves or others”. I mentioned palliative care and was told “she’s not ready for palliative care, she isn’t dying.”
The following day I met her consultant who told me there was an operation that they could perform for her prolapse, but considering her age they would not perform it until her condition got considerably worse. They were concerned that she might die. He was not impressed by my response that that was what she wanted anyway. I wonder if his private concern was at least in part about how it might affect his operation success statistics. Is this a motivation for doctors to refuse to operate on the elderly – even if it leaves them to suffer?
It’s like giving up yourself – being a piece of equipment that’s told where to go and what to do.
Joan was discharged and had to continue enduring the pain and discomfort. She was re-admitted on New Year’s day 2014. At this stage I had discussed the situation slowly and carefully with my mother so that she understood. With my help she wrote a statement to the effect that she would like to have the prolapse operation even if she died in the process, as the pain and discomfort was making her life unbearable. Even this did not persuade the consultant. After a week or so she was discharged again.
A month later she was demanding far more attention from her carers than they could provide in her sheltered housing situation, so I was asked to move her to a nursing home. My mother and I had discussed this. Joan was keen to stay in her own flat as long as she could. Her dementia would have made it difficult for her to adjust to a new location and there was still the possibility of a rectal operation which would change the situation. I contacted Joan’s GP and asked him to negotiate with the hospital consultant as I was getting nowhere. Within 24 hours Joan had been admitted to hospital as an emergency and given a successful rectal operation.
I’ve never felt so frightened at any time in my life.
The operation largely solved the pain and discomfort her prolapse had been causing. Her dementia worsened though. Over the following 18 months she continued to live in her flat but was getting more and more confused. By now she was doubly incontinent and was unable to call for help as she could no longer remember how to use the pendent alarm button she wore round her neck. I’ll spare you the worst details, but suffice it to say that Joan had lost all shreds of dignity. She started getting lost around the communal building in which she lived and even around her flat. She couldn’t find the way to the communal dining room. Sometimes she couldn’t even find her way from her bathroom to her armchair within her own small flat. When she got to the stage where she was found wandering around outside at night with few or no clothes on, the sheltered housing manager quite understandably insisted that she had to move to a secured dementia nursing home.
All I seem to do is to create problems for myself and other people.
I just don’t want to go on.
After a very difficult few weeks searching for somewhere suitable, a place came up in an excellent dementia nursing home where her name had been on the waiting list for several months. However, she never really settled in. She couldn’t tell the difference between carers and residents. She couldn’t find her way around her room to her en-suite bathroom. She couldn’t summon help except by wandering round and asking whoever she met. She hated her condition. At times her frustration vented itself in acerbic comments to carers, and even to occasional mild physical violence towards them. I have no criticism of the carers – on some occasions I observed Joan being totally unreasonable and unpleasant with carers who were being incredibly patient and encouraging. Joan was no longer the gentle, kindly, considerate person she had become as an elderly lady.
Joan died, unexpectedly one evening in December 2015. The official cause was “Frailty of old age”. At her funeral my speech about her life ended:
‘No one should be sad at Joan’s death. It was the release she had been waiting for, for far too long. We had already lost the person we knew.’
‘Our parents teach us many things in life. The last thing my mother taught me was how not to die. Over two years ago, when my mother was often in severe pain, she asked me to help her die on a number of occasions. She prayed to be allowed to go to heaven. She just wanted to go to sleep and not wake up. Although I sympathised and wished I could help, I had to remind her that the current law in this country prevents people helping her in that way. “Make them see sense” she said, “make them see sense”. Her quietly spoken words ring loudly in my ears. She was right. Why should this vulnerable elderly woman, and others like her, be forced to suffer, against their will, at the end of their life?’
‘ “Make them see sense”. She set me a hard task. But, driven by what I witnessed; by how my mother was denied the end of life choice she, quite rationally, wanted; and by what I would want for myself, without having to go abroad; I have already started doing what I can.’
Coordinator – My Death, My Decision