Life and Death

“To be or not to be” is really not the question. If we’re are asking the question it means we actually exist. And if we are here it is inevitable that we will die.

The only question Hamlet was asking and answering in Shakespeare’s wonderful words is really a “how” in two parts. How do we want to live and how and would we like to die? In both cases we have very little choice, as he so chillingly describes, but what choice we have is, in my view, quite significant both to ourselves and to others.

I know how I would like to be remembered. Sadly I do not think I have met these expectations in life but I have tried. On the positive side people seem to primarily remember the good in people they love or like. I do not feel the need to be viewed just as someone who “fought” an illness as if such battles are a sign of bravery rather than merely choice or as someone whose “acceptance” at the end is cowardice or alternatively something noble rather than also just a choice. I would like my life, which will inevitably include my death, to be remembered.

 

I also know that I would prefer not to live in a demented or disoriented state, out of touch with reality. But here there is little choice as often the illnesses which cause these appear either with no warning or allow for no self awareness. And despite my attempts to focus on her not insignificant life, my mother ‘s period of dementia haunts me.

Now in my seventies (but, at this stage, fortunate enough to be very healthy) the significance of the question to me is that dying will come sooner rather than later. For me the “how” of dying is inextricably connected to the “how” of living. Like most people of my age I have now had significant experience of loved ones and friends dying.

The first experience of a family death we had was our young premature baby who died after only a few weeks of life. Fortunately we did not have to deal with as many decisions as a lot of parents of premature babies do because he was not exceptionally early and he had no other medical conditions other than prematurity to complicate the choices, but there were still many questions which had to be posed and considered in his treatment.

I was present when each of my parents died.

My father’s death was unexpected and, for the nearest and dearest, this is probably the most difficult. I was dealing with the uncertainty, a mother who was in a state of disbelief about what had happened,  an extremely delayed ambulance and a very rude senior paramedic. For the dying, however, this must be the best option as Hamlet suggests, and it was not as if things were left unsaid. He and I, like most in my family, had often had discussions about the big questions of life. I had had one with him on his birthday only about three weeks before his death.

My mother died of  dementia and prior to her death she had lived for some years in this state. It was a situation which we had discussed during her rational times and I knew she hated the contemplation of such an existence. She was very unhappy while she continued to be confused and lose her capacities but once these were gone she appeared enjoyed her simple life in a nursing home until she became immobile. The enjoyment that she exhibited both surprised and continues to confuse me.

My husband was ill for a few months more than a year before his death. He spent almost six months at home in bed, visited by family and friends, and died peacefully here. It was the way he wanted it and I think, all things being equal, dying at home would also be my preferred option. Where he and I differed, however, is that he underwent much more treatment than I think I would have done. However how do I know how I will feel until actually faced with the same sort of choices? He was much more impressed with the doctors who suggested aggressive treatments, than the quiet and gentle gastroenterologist in whom I had faith and whose suggestions I would have followed and who, indeed, turned out to be very exact with his advice and recommendations.

My husband’s sister summed up his attitude just after he died. She said, “It was very strange. He knew and accepted he was going to die but he seemed to be determined that he had to get better first, yet he was extremely intelligent.”

A very close university friend of us both died last year. He had been a Medical Practitioner and had been ill for some time. After making preparations with his wife (also an old university friend) which included a move for their life together until his death and her life afterwards, he decided, by himself, that he needed to go into hospital and have no further treatment. He died quite peacefully and was coherent when I saw him the day before he died.

He spoke of death and treatments when he visited my dying husband at home much as Dr Ken Murray does in the extremely interesting article “How Doctors chose to die.” (referred to us by Denis Wright in deniswright.blogspot.com/ where he discusses these issues).

Our friend’s opinion, briefly summarised was that treatments such as radiotherapy are very invasive, sometimes much more so than actual surgery and can do harm as well as good. He thought that the public are not made sufficiently aware of this and that the lay person is inclined to think that an operation is the ultimate in interference. He also had professional, and at the end very personal, experience of the fact that very often doctors will not know the answers. They are not invincible and we must not expect it of them.

My own experience as a hospital visitor for the first nine months of my husband’s illness during which my husband was a frequent inpatient receiving multiple treatments, supported Dr Ken Murray’s views. I have blogged about this before. (As a regular visitor to someone who is very sick, there is plenty of unavoidable observation and eavesdropping time.)

Often a patient would be brought in calm and peaceful and apparently accepting and a group of relatives, quite often adult children then arrived and demanded aggressive treatment. The nuanced advice the doctors were giving was either not properly heard or was ignored. Elderly partners in distress were overridden by the younger family members or the patient was convinced to change his mind and treatment started with all that triggered off for the unfortunate patient. Drips are inserted and off it goes. Occasionally I had experience of, or saw merely as a bystander, specialists, often the younger ones, genuinely enthused about what they could offer and the new treatments that were just available. This  enthusiasm, admirable as it was, had a tendency to override the issues of possible extra suffering and sometimes gave the patient and relatives unrealistic expectations that exceeded what the specialist could actually offer.

In summary I think I know what I want when any of a wide range of illnesses strike me down. It is as much peace and physical and mental independence as possible.  I do not want major resuscitations. I do not want artificial feeding or drips for rehydration. In fact the refusal of fluids is and always should be an option open to all of us. It seems to be fairly normal in very ill creatures. In the case of my worst fear, dementia, I will have to leave it to my children but I do hope they make a choice that is convenient to them as I know that happiness can be found in a nursing home being useful, as my mother was, by watering all the flowers on the bed linen with the water jugs or helpfully collecting all the false teeth!

But my younger daughter has written my end of life plan for me. She tells me she is going to build a cosy log cabin in her country back yard for the years in which I need help and supervision but she informed me kindly that she will keep the floor as just an earthen one so neither of us has to worry about incontinence. One little part of me strangely looks forward to that cabin.

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About Anne Powles

I am retired from paid employment. During my working life I have been variously and sometimes contemporaneously, wife, mother of four, lawyer, teacher and psychologist. I have also been a serial education junkie. As are we all, I have been an observer of the world around me. Here I have recorded some of my memories, observations and theorisings.
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4 Responses to Life and Death

  1. Denis Wright says:

    This is a very good article, running the entire gamut of facing death and dying from baby to parents, husband, relatives and self. As you know these thoughts about dying are much on my mind at the moment. My mother’s dementia at the end of her life has parallels with yours, including our awareness of knowing how much our mothers would have hated being in the condition they ended up. They would not have seen this as a dignified end of life.

    What amazes me is that people like you have managed to look after someone needing a great deal of attention for an extended period of time. I shouldn’t be too surprised in one way when I think of the exhausting demands placed on mothers in particular looking after small children or one or more with special needs. Of course I would do all in my power to look after wife and/or children in similar circumstances but that has never really been tested. Your article really brings home to me the strength of carers determined to do what they can for loved ones needing that exhausting level of care. Love finds a way, but it shouldn’t be taken for granted nor at the cost of the health of the carer.

  2. Anne Powles says:

    Thank you for your comments. I agree with most of what you say and acknowledge that caring is hard work but the wishes and needs of the person who is ill are extremely significant. For a carer it is important not to feel rejected if the patient wishes to have more professional care than that available at home (and I can attest to mistakes amateur carers like myself make). Also it is wonderful if there can be mutual agreement as to the course of action. I regret having to deceive my mother somewhat, but there is little choice in the case of dementia.
    I endorse what Ros said in her comment on your wonderful post on this topic, communication at this time is so very valuable. It is particularly valuable to the one “left behind” after the caring is done.

  3. It is significant to me, Anne, to read here an illumination upon a struggle I have each time Dave chooses to go into the wonderful rehab ward at our small rural hospital where he receives intensive physio for 10 days to stave off the increasing debilitating effects of MS. This is a period which not only improves Dave’s strength, it gives me respite from caring, and a string of nights when I get to experience unbroken sleep. It goes without saying that this is a very valuable to my general health.

    The downside ( for me) and upside )for David) is, I see what a relief it is for him to have a rest from care-taking me and and being concerned for the wear-and-tear on my physical, emotional and psychological self whilst I care for him 24/7 at home. For instance, David feels completely comfortable to ask nurses to turn him as many times as he needs at night, Or he does not try to “protect” nurses from needing assistance to get up and into the wheelchair to be taken to the bathroom at e.g. 3.28 a.m. He feels awful to wake me, yet again, to attend to him. Nurses are paid. He is not in relationship with them. He doesn’t have to nurture them and protect them. They are not his wife. The Carer/Care-Recipient relationship is very, very tricky.

    The words you have written here which I shall return to when I feel challenged by the comfort, ease and safety David so obviously feels in rehab are: “For a carer it is important not to feel rejected if the patient wishes to have more professional care than that available at home”. (Occasionally!)

    Thank you Anne

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