I have worked with many, many people with complex physical disabilities during my professional life, including those unable to move and/or talk. I have been dedicated to aiding them to live their lives in as complete and full way as possible. But there is a profound difference between someone young or middle-aged or even as old as my father choosing life, and the slow deterioration in very old age as the brain cells atrophy and the bodily systems pack up. I appreciate this is one point of view, and there is a part of me that recognises that Dad was happily sailing the cosmic seas during this last period of his life. But maybe, just maybe, those infections may have released his spirit to sail the seas more fully just a few years earlier? Would that have been such a bad thing? What follows is one perspective in a complex field.
She was enchanting, my great-aunt Evelyn: grey-haired, trim, big mouth with a wide smile. And completely dotty! Utterly unpredictable! I come from a very polite family, and my grandparents’ generation were quietly proper about most things. But to my childish perception, Aunt Evelyn was the Christmas Cracker. She would walk along Southsea promenade with my grandmother, a sweet, gentle lady with endless patience, and suddenly start singing “Knees up, Mother Brown” whilst swinging her skirts and exposing her thick beige stockings and her knobbly knees to all and sundry, in the best of the Music Hall tradition. Whatever would pop out of her next?
Her story was a strange one. She had emigrated from Germany in the 1910s, and changed her name from Muller to Miller. She had been engaged to my father’s uncle, my other grandmother’s brother, who never returned from the First World War, fighting the country Evelyn had left behind. But Evelyn remained ‘family’, and loyal to her dead fiancé throughout her life. Apparently she was the personal secretary to the head of some City of London business, and was perhaps one of the first ‘career women’ of her generation. Her house in Brixton, South London, was a large one, and in the 1950s the area was considered to be ‘genteel’.
Evelyn came to my awareness in the 60s. Brixton was one of the first multi-racial parts of London, which meant that the area was home to many marginalised groups, as well as those that the predominantly white culture noticed– ex-cons, people with mental health issues, bed-sit land. My father worked in London during this period, and always had a strong sense of family. (We used to tease him that he would have been better suited as a Russian patriarch on a large estate, Dostoevsky-esque!) When he noticed that the usual Christmas card had failed to arrive, and as he had no telephone number for her, he decided to call in.
He found Evelyn in a sorry state: the house was filthy, she was eating out of tins of cat food, yet still managed to greet Dad with her delightful smile and full recognition. My father began to put two and two together. Her lodger, in the guise of helping an old woman, was cashing her pension and pocketing it each week, as well as slowly selling off her various possessions. Whilst not hugely wealthy, Evelyn had had a comfortable life style and had enjoyed the culture that London offered, and apparently her house had had one or two good pieces in it.
Then began a long legal battle, as Dad took her under his wing: for Evelyn was ‘family’ neither in law nor in blood, only in spirit. Eventually, he became her legal guardian, moved her down to a nursing home very near our house, and slowly sorted out the mess that was her very neglected private affairs. Evelyn remained as cheerful and gloriously improper until the day she died.
During that same period of the 60s, my teenage years, both my brothers and I recall Dad repeating over and over “I don’t want to go Ga-Ga”, “It must be terrible to be Ga-Ga”, “Don’t keep me alive if I go Ga-Ga”. We would have great debates around the dinner table about the relative merits of different types of disability, but his mantra remained constant: “I don’t want to go Ga-Ga”.
My father has a love of the sea. He joined the Royal Navy just before the end of the Second World War, and our family past-times always involved a boat and some water. I used to be envious of folk who did other things, as all we ever managed to do was sail! But I also love the sea, and would forget my envy once on a boat again. When I reflect on Dad in a boat, there is one image that constantly returns: Dad sitting in the cock-pit, hand on the tiller, sails set, boat steady, and him gazing out to sea. His face is calm, brow unfurrowed, a sense of stillness and peace. The image has the same feeling tone that came from him in his state of advanced dementia.
Dad went through the “Ga-Ga” stage (including not certain if he was fully comprehending in his role as a tribunal judge; giving up driving; throwing a phone down in helpless rage because he did not know what to do with it) and after a steady decline spanning 9 years in total, spent the last few virtually immobile and without obvious means of communication. He had the occasional yes/no, or comprehensible utterance (once when I visited him, and said “Oh Dad, how good to see you”, he smiled with obvious recognition – which is not always the case – and said “Too good, too good!”) but the feeling tone in Dad was the same as in the boat: calm, unfurrowed, timeless – indeed, all the time in the world…in fact, deeply within his own world.
He contracted the occasional urinary tract infection (which, according to one neurologist I spoke to, is the friend of those with Alzheimer’s/ dementia) and nearly died, but would be fed antibiotics and since he always had the constitution of an ox, would recover again. My mother had been helped by a superb package of care from Hampshire County Council for the previous two years, slowly increasing from a morning and evening visit to help Dad in and out of bed, and be washed and changed (he had been doubly incontinent since 2003) and progressing from a “Take your partner for a zimmer and a shuffle” through to his special chair and bed, to the indignity of a hoist with his large frame dangling like a calf in a net, to being permanently bed-ridden and receiving three visits a day. The carers were both a curse and a gift to my mother, who as a very private and self-contained woman hated the intrusion on both her and her husband’s lives; yet as she was also increasingly isolated in her changing relationship to my father, she began to welcome their visits and their tales of other lives.
It was a particularly pernicious urinary infection which rendered Dad hospitalised in October 2006, after which the authorities insisted he could not return back to the family home. He became the permanent resident in one fixed position in a bed in a nursing home a short walk from the family home until May 7 2008. I often wonder whatever was in the mind of the eager young doctor who sent my father into hospital? What on earth possessed him? Does he have any idea what it is like to lie in one position with very little obvious quality of life at the age of 82? Was he afraid that we might sue him if he was not seen to offer the very ‘best’ of medical attention? If that were the case, could he not have begun that discussion with my mother and brothers who lived close? (My mother could in no way have had that conversation on her own, and also comes from a generation that tends to think that the doctor is right and should never be questioned.) What is so very wrong in recognising that indeed, infection could be a welcome friend in this instance? Is a timely death worse than untimely life?
Our family woke up after my father’s hospitalisation, and prepared a joint statement to the Nursing Home asking that only pain relief be administered in future, no antibiotics. (We were slow!) In spite of this, the Home still unwittingly, well-intentioned, gave anti-flu jabs each winter until we noticed. My high dream is that medical staff and carers could raise these difficult issues, with sensitivity and awareness, BEFORE the crises appear. It may need a trained facilitator who can suppport all the different points of view, and bring awareness to the subtle signals in staff, family and the patients themselves. Or maybe to integrate some of the attitudes and practices of the hospice movement into Homes and mainstream medicine. Whatever should evolve, the good and loving care of our elderly relatives is of paramount importance.
Process-oriented theoretical perspective:
My father had a complex relationship with ‘knowing’ (related to his very responsible professions in a few fields) and ‘being’ – as depicted in his unfurrowed brow and sense of peace when sitting at the helm of a boat. This was an inevitable part of his ‘life myth’, or the blue print which accompanied him as he grew through life. He appeared to become acutely aware of this in his fifties, during the time he took Aunt Evelyn under his wing, and maybe was even having the first hints that this may be his destiny. One of the things that a process-oriented approach attempts to do is to go with what is trying to happen. When that comes down to physical symptoms, that is far from obvious – indeed, exceedingly complex! My husband would not be alive now if there had not been strong medical intervention to address his aggressive cancer. Yet my father’s condition raises the question of not ‘How?’ but ‘Whether?’
A few years ago – before Dad was so ill - a former colleague of mine approached me because she knew of my connection to Arny and Amy Mindell’s coma work. Her own mother had suffered a massive stroke a year before, and was now hospitalised, doubly incontinent, unable to verbally communicate, and kept alive with PEG feeding through her stomach.
(Percutaneous endoscopic gastrostomy (PEG) feeding tubes were first described in1980. Early studies typically demonstrated it to be an easy and safe technique when compared with the available alternatives such as open gastrostomy. PEG feeding tubes are increasingly used for long term enteral nutrition. It is used where patients cannot maintain adequate nutrition with oral intake.)
When I met her mother, my colleague told me this story: her mother and father had gone to the funeral of a dear friend in a small, seclusive burial ground on the side of a range of hills in the shadow of which was their own house. They had been unaware of this site, but as they drove home, her mother had indicated that she would like to change her will to being buried there. Later that night she had a massive cerebral vascular accident and never spoke again.
A year later I heard this story and was immediately impressed by the synchronicity of events. My friend and colleague was very distressed that her mother was being kept alive by PEG feeding, and asked me to see if I could use some of the binary communication techniques as described in Amy Mindell’s book ‘Coma’ . Her mother was clean and well cared for, in a typical hospital bed. I began to search for any minimal cues in her in order to set up a binary code system, and found that when I lifted her right arm and supported it at the elbow and wrist, she had some voluntary twitches. By asking questions such as “Is this your daughter xxx?” and feeling the twitch, we could identify a yes/no communication system together. When asking such questions, one needs to make sure that they can be answered by a yes or no response. Eventually I plucked up my courage and went on to ask her whether she would like to be taken off the PEG feeding device. Her arm very definitely twitched. I went on to ask some questions that were less contentious or that I anticpated would be a ‘no’ and there was little movement. I then asked her again: “Would you like to be taken off the PEG feeding device?” Her arm nearly shot out of my hands! I looked acroos the bed at her daughter, my friend, and she simply said “We need my father see this too.”
When I returned a few days later with woman’s husband, the hospital themselves were making decisions: they knew what we had been doing, and felt that it was time to review the situation. They had independently decided, prior to her husband’s visit, that perhaps the time had come to withdraw the PEG feed.
I am very aware as I write this of books about locked-in syndrome and such like. Yet the author of the Diving Bell and the Butterfly is also using the same binary sytem to create healthy life as it is in the case of my friend’s mother to decide that perhaps her time had come to die. Using such a binary system, in the hands of trusted, loving – and patient! – individuals is a fabulous way to make connections with people in apparently non-communicative states. It also empowers the individual themselves, handing a degree of control back to them in small ways, and in the case of my friend’s mother, more significant ways too. In her case, the medical interventions had been made when resuscitating her from a massive stroke. Significantly though, her husband had not , in my friend’s opinion, been ready to lose his wife when she had had the stroke. A year on, even he could see that maybe both his life and her life would be more tolerable if she were allowed to die. The whole field around a person is a significant factor which needs to be taken into consideration.
We had been using such binary communication techniques and minimal cues with my father for some two years prior to his severe urinary tract infection leading to hospitalisation, yet effective use of even these was greatly reduced during the lat two years of his life. Nevertheless, entering the peaceful sense of being at the helm of a boat on a calm day was nearly always possible!
1. Arnold Mindell -
COMA, KEY TO AWAKENING: Working With The Dreambody Near Death.
New York + London. Penguin-Arkana.//Lao Tse Press, to be republished. http://www.laotse.com.
2. Amy Mindell -
Coma : A Healing Journey :A Guide for Family Friends and Helpers.
Lao Tse Press, Portland Oregon. www.laotse.com.
3. An Alzheimer’s Surprise Party” by Tom Richards and Stan Tomandl
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