From a member of Friends at the End
Introduction
Some time ago we asked for information that might be helpful to other FATE members.
We are still interested to hear from you if you were willing to tell us your story which we could perhaps print in the form of a leaflet — however long or short.
Learning about how other people have coped with a relative or friend dying can really help lessen the isolation and also prepare people if it happens in their family.
One of our members sent us the story of how her family coped with the difficulties that arose when their father wanted to die in 2010.
They discuss the decisions to be made and the problems that the family encountered.
We are grateful to this family for a detailed account of a very difficult time for them.
Death of My Father
My father had a heart attack in 2000 — he recovered and continued to live a reasonably active life, but during 2005 he was becoming tired.
He and his wife were very active during retirement on the basis that “you’re a long time dead” and whilst we are alive let’s live. So they did.
When my father broke his hip — a common enough fall at his age — he just did not have the physical strength to restore himself to his previous level of activity. He was really worn out.
Looking back it is easy to see how he was declining — he was happiest if allowed to stay in bed.
Voluntary Euthanasia was something both he and my mother supported and years before they reacted positively to the news of the suicide pact of an elderly couple. I had been very surprised but later came across Dignity in Dying information in their files.
One evening my mother returned from the hospital and phoned to say that your father is quite clear that he doesn’t want to live any longer and wants you to organise it! For a few years, my parents had been under the illusion that I could fix anything! I was both shocked and devastated.
The next day I was at the hospital early to talk with my father.
He was clear that he was exhausted and could not see his position improving sufficiently to give him the quality of life he wanted.
My father was a strong man both mentally and physically; he was not happy in hospital and the prevailing view of the nursing staff was that he needed to make more of an effort to get better — and there was a religious imperative in their dealings with him which made it harder for us all. We thought that when he was home there was a chance he would think differently.
Fortunately there were enough resources to hire a hospital bed and we finally established 24-hour care at home, which involved two carers doing shifts leaving the family to cover their time off. My father’s main words were “I want to die, please help me!” This was devastating for us all as we didn’t know what to do or where to turn.
My mother was clear that her beloved husband should not be left in this state and that he should be allowed choice and control over how his life should end. She found it difficult to understand why as a country we could allow young people to enter the Armed Forces and be killed but an elderly man having had a good life but wanted to bow out was not allowed to die with dignity.
In our ignorance and desperation we investigated various options. Nurses talked of depression and anti depressants but the GP understood that my father’s response to his situation was absolutely logical. He was clearly sympathetic but explained there was nothing he could do.
We continued to search for information.
We contacted FATE and Dr Irwin and there was a high moment when we were referred to an article in the BMJ about a judgement that had been made about a woman suffering from depression and the claims that mental torment should be considered alongside terminal illness.
I urged the GP to read it and to have pity on us all; my father pleaded with him on each visit, which must have been hard for him. It was reassuring that he visited whenever he could and when he went off for a long weekend he seemed embarrassed. Dealing with us though, I thought that he must have needed a break.
It was an awful situation; the GP was clearly distressed and said to my mother “If I were a vet I would be struck off for leaving an animal in such distress. As a doctor I would be struck off for alleviating your husband’s anguish.”
I read the information supplied by FATE about depriving oneself of food and water and finally presented this to my father as the only option that I could find. I told the GP who insisted that we should not cut down on water as this would lead to pain. (I later discovered that this was inaccurate. [1])
My father was relieved being able to make a decision that was within his control but then it was a question of time. He was not in physical pain so different drugs were prescribed intended to help sleep or anxiety but nothing worked, my father slept very little — short dozes — and he would often want to be turned over every few minutes — this was not an easy task.
So the indignities continued — he became doubly incontinent —this decline had begun in hospital when the staff were too busy to respond to a bell for a commode. Arguably this was one of the reasons that shifted my father into the realisation of the dependence that was in front of him and why he so desperately wanted to die. It was outrageous that an elderly man should have been left in this state and yet it seems that this is seldom talked about whilst being a common occurrence.
It is so degrading for an independent person to find themselves reduced to nappies because staff are too busy to provide this level of care.
So we battled against lack of sleep, trying to keep my father comfortable.
The carers washed him tenderly each morning and my mother was able to sit quietly holding his hand for days on end with him asking repeatedly when he would die. Whilst she supported his decision, it was agonising for her not to be able to help or distract him.
We tried music, television, reading aloud, but nothing would engage him, only discussions of how long it would take to die — something we had no answer for. He was absolutely single minded. The GP had said it could take three months!
I remembered having heard about people not being able to let go of their loved ones and somehow needing permission to die. It seemed part of the notion that some dying people wait until their loved ones arrive before they actually die. So we tried meditations and gave my father whatever permission he needed to let go.
So there were ups and downs — the nights were awful. Some carers disapproved of my dad not eating and would encourage him to drink tea and caused him terrible distress by telling him that he had a responsibility to live for his family.
What did we know? We were losing a precious part of our family and aware of being watched. Trying to face up to what was happening and not hide it away but at the same time realising that we were only being give a few pills at a time, presumably in case we gave them to him all at once.
We were warned that if we gave more than the prescribed dose of any drugs, it could harm him, so we were meticulous in the doses, but they were completely ineffective.
At one point it seemed that he was developing a chest infection, which apparently could have led to him dying more quickly. He was more comfortable lying nearly flat, but one carer kept him upright to help the lungs drain because it was her job to keep him alive despite his wishes.
It was a delicate balance.
The community nurses called to check; the GP visited most days and was available by phone. The nurses were watchful of the GP; there was an air of suspicion. They wanted to call in the Mental Health team and were not happy that the GP considered it completely unnecessary.
My mother was distressed by my father being called by his first name. It felt patronising. He remained polite and bemused and was finally able to distance himself from his physical surroundings.
At times, there was a calm and peacefulness in the room but he could not be left alone because if he dozed and woke up he was frightened, crying out and it was clear that he felt abandoned.
His grand daughters were magical with their grandfather — they held his hand, they helped turning him, massaging his feet and hands, and keeping his mouth hygienic, and they supported their grandmother and me and each other. He had been and still was an important part of their life and they were there for him at this crucial time. He didn’t want to see anyone except his family and he didn’t want any light in the room; it was a beautiful summer outside and we watched over him in shadows.
If I was going out for a couple of hours I would say goodbye and something that caused my heart to stop beating many times was my father saying “I am really anxious…” there would be a gap…too long, during which I would be frantically fretting that he had changed his mind despite all his earlier clarity and that I should never have supported him in this decision. Then he would say “I am anxious because I don’t want to be here when you come back!”
We kept a diary of medication, of sips of water, and when he was turned and which side as his sense of time was sometimes vague.
Contrary to initial advice we stopped his insulin and watched carefully expecting his blood sugars to fall drastically and wondering if this would produce a hypo. We did blood tests to check but nothing dramatic happened. No food no insulin.
It seemed to take a long time — the outside world no longer existed, we were in an extraordinary vacuum. We stopped looking for more information on the internet and just survived our own situation. My father was strong — none of his organs was ready to stop working.
After three and a half weeks, the GP presumably believed that the end was near and another doctor visited too (I later discovered that this was a palliative care doctor) and inserted a drip and my father very quickly became unconscious.
Sitting beside him I didn’t know that we would never have another conversation, I thought he was just sleeping. I was told by one of the carers to keep talking to him in case he could hear and would be comforted; he showed no signs of hearing at all.
It took four more days — everything carried on as before except there wasn’t the anxiety of his discomfort any more.
In the middle of the night, he died.
The carers washed him and we sat with him — the greyness was very disturbing. It was morning and the GP was writing the Death Certificate — I knew he was anxious doing this but at the time I couldn’t understand why, but instinctively knew not to ask questions. The funeral people took my father away and the administrative process began.
This was uncharted territory and it was frightening on occasions as we had no knowledge or experience.
Despite this fairly factual account it was an emotional roller coaster but the objective that kept us going was to support my father in his wish to end his life.
What did we learn? That it’s tough — we needed emotional strength to cope with the inevitable disapproval and the difficulty of holding on to the belief that this was the right course of action. That it is difficult for the doctors. Whatever their inclination or belief they are in an unenviable position. I did however wonder what the GP would do if his own father was asking for help to die.
I hope it goes without saying that we loved him and didn’t want to lose him; we weren’t ready for his death and still mourn him but he was so clear and so was my mother and they expected us to be strong and support them. So we did!
[1] There is a FATE booklet entitled Voluntary Refusal of Food and Fluid written by Dr Wilson and Dr Chabot that provides useful guidance on this process.
