| November 2, 2008 | Living with Dying Revernd Jane Bramadat, Don Trapnell and Deana Hutchings |
Living with Dying
Psalm 121 1. from the Hebrew Bible adapt. Robert Zoerheide/J.Bramadat)
"I will lift up mine eyes unto the hills from whence cometh my strength. My help cometh from the heavens and the earth, from good neighbours and the spirit of the hills and the valleys and the seas and the prairies which I cannot make my own.
My help cometh from outside and from inside. It waits when I am impatient. It goads me when I hesitate from fear. When I am strong with courage and with faith, the sun and rain shall not smite me by day, and sorrow will not haunt me by night; goodness and mercy shall follow me all the days of my life.
I will lift up mine eyes unto the hills. They will keep my coming in and my going out. They look from afar like the inscrutable heights of the soul."
Anthem
“Ave Verum Chorus” (Mozart)
FUCV Choir
“Living with Dying”
Jane’s introduction
I have had the pleasure and the privilege of spending time with Don Trapnell and Deana Hutchings over the past months - both in person and through phone calls and email discussions. They have been generous with their time and very forthcoming in talking about living with dying. And we have laughed with each other too - I was so glad to see that humour was also very present.
First Unitarian is honoured at their willingness to be role-models for us in this most sensitive and yet essential part of one’s life journey. Unitarian Universalists concentrate on this life, and that includes the task of leaving it well.
Let us begin quickly, and use our time wisely, listening to their comments and then to answers to questions that we jointly created. If we don’t cover all the questions we have, we will continue asking and answering them in the President’s Forum this morning which will take place following the service in the Board Room in the Farmhouse across the way.
Don’s description of living with dying
My name is Don Trapnell. I am 41 years a Unitarian in Montreal, Toronto, Vancouver, and now here in my spiritual home since 1991 when I retired and moved to Victoria. I am age 77, and I am living with dying. No one knows with any certainty when I will die; but probably before next summer. However, I hope to have to apologize for still being alive next fall.
Facts: I was diagnosed with CA of the prostate 6 years ago, by a DRE, and Biopsy and CAT and Bone scans revealed that the cancer had grown beyond the prostate capsule. I took various drugs, and had 37 radiation treatments, which shrank the cancer. In 2006 my geriatrician told me that I could assume that my cancer was completely obliterated by the radiation. I never had any symptoms from the beginning of this journey until the summer of this year. Early this spring, my PSA (an antigen that indicated how aggressive the cancer is) jumped over 100% in 60 days. A CAT scan in June revealed that the cancer had spread to multiple sites in my pelvis, spine and femur. In medical lingo, I have “bony mets”. My oncologist or cancer doctor, told me that I was now living with terminal cancer. In other words, I would probably not survive another year. The specialist in the pain and symptom clinic of the Cancer Agency and my family doctor, told me that due to the aggressive nature of the cancer, it would be wise to enroll in Palliative Care, or Hospice. Hospice is not so much a place as it is a collective of health professionals and providers serving people with terminal disease wherever they might be: in hospital, in a hospice, or at home. Not all cancer patients prefer to die at home but that will be my preference and here in Victoria, that is particularly possible, due to our Home and Community Health program that partners with Victoria Hospice.
2. Feelings. The first week after learning that my life would end soon brought depression and tears. But to my astonishment I was able to accept the reality. I then felt a huge lifting of most of the burdens we all carry. I lost or gave up my fear of dying. I learned that the fear of dying lurks in some corner of the minds of all of us. But it is possible to let it go.
My strongest feeling is that of gratitude. Gratitude with a large G: Gratitude for the love of my wife who happens to be a nurse who worked in Hospice for 10 years and now teaches about end- of- life care at UViC. Gratitude that I have the loving support of a very competent Community Health Nurse. Gratitude that we have arguably the best Hospice Palliative Care in Canada, right here in Victoria. If I have a symptom such as severe pain that breaks through my regular pain regimen at 4 am, there will be nurses from the PRT (or palliative response team) at my home, probably within an hour or so. If a symptom acts uncontrollably, I will be taken to the 17 bed facility at the Royal Jubilee Hospital where medical specialists can work on solving the problem and get me back to my home as soon as I am ready to do so.
Gratitude to my four children, ages 45-55, and my 3 grandchildren, who live from Whitehorse to Vancouver, Winnipeg and Halifax. They have all been here to visit our home in Victoria. Gratitude for a fulfilling life that also gave me adequate financial resources, four loving children and a marvelous companion and wife, Deanna. An opportunity to serve my fellow persons in various ways. Even now I am acting as an advocate for 2 persons in need for my support. It is the gift of service. I can still serve.
I am enjoying the opportunity of being able to plan for my death in many ways. This includes early estate distribution that has enabled me to gift my 4 children as well as other needy people close to my heart now before I am dead and gone. I have already given away furniture, clothing and tools that I would have otherwise kept. Since I won’t need anything beyond a year it is easy to dispose or let go of much of the excess stuff we collect. What a marvelous feeling of letting go. Sometimes, it is a time of black humour. Deanna and I have developed banter of humour around our situation. For example, when she suggests I might need new eyeglasses, I ask if I can just rent some for a while! Moreover, I received a phone call from my friend in Arizona, asking me how I was. I answered that , “I’m dying of cancer” and he replied, “that’s good” and carried right on with the conversation!
I am feeling joy in life more intensely and deeply, such as when walking with Deanna and our dog Voltaire, sitting before the fireplace while listening to some of our favourite music. My listening to Beethoven’s Chorale in his 9th Symphony and Verdi’s Requiem brings me tears but there is a joyfulness with the tears.
And so, death is not the enemy; suffering is the enemy. The Palliative Care people can reduce the symptoms such as pain and other effects of cancer. The alleviation of suffering is what palliative care does best. For that, I am grateful.
Deanna’s description
We are talking about this today, at Jane’s invitation because Don and I both believe it is important to demystify and normalize this important and natural aspect of human experience. Don and I have entered a new and very important stretch of road on our shared life path. We have learned that the eventual outcome of his prostate cancer cannot be altered. It will not be cured. The effects of the cancer can of course be ameliorated or softened and that is the work and the intent of palliative care. We have faith in the skills and science of the palliative physicians and palliative care team. They can accomplish that.
And so, we have entered a time when we are living with dying. I emphasize the word living because we have both observed, that if anything, we are living with a heightened sense of life’s small pleasures and a heightened sense of how sustaining are the rhythms and rituals that comprise our shared life.
This chapter in our lives has accentuated another truth for us and that is the presence of paradox in the human journey. And while I have long believed in the presence of paradox in our lives, I find it is particularly acute now. Examples include the mixture of joy and sorrow intertwined, sometimes one is more prominent than the other; they shift in the ebb and flow of the day, the hour. Another paradox is that of hanging on and letting go all at once. Don has talked about letting go of possessions and habits yet hanging on to shared pleasures and savouring the moment.
Oddly enough, living with dying is a very alive time, for both of us, each in our own way. Interestingly this is a time of newness. This is new territory and with that comes a curiosity-a new energy. It is in Don’s nature to be a quester-this journey is a worthwhile quest, with the capacity to ponder, and to explore. And so it is in the spirit of that quest that we can explore new areas such as farewell gestures, creation of a special space in which to spend last days, legacies of love to family and cherished persons, death awareness without death obsession, embracing mortality and embracing living, simultaneously. The polar opposites, if indeed they are polar opposites, converge and we are living with new awareness everyday.
What does this mean to me? It involves staying open to sameness and newness all at the same time. Conversations, topics of discussion, decisions may feel new and yet, life carries on with a surreal sense of sameness. It means letting in those momentary flashes of death awareness without being flooded with them and holding them in concert with savouring the moment-with still making plans yet aborting them with grace if needed. It’s meant tending to a range of important activities-the legal, the social, the practical and the artistic. It’s meant being mindful of our energy and time and spending those judiciously.
I understand complex experiences best through the lens of metaphor and there are two metaphors that guide my understanding of this unique time. The first is music, the second is currency.
I think often of the musical term and symbol, the decrescendo. From my perspective, to approach the end of life is to enter the decrescendo that is the symphony of one’s life. During the decrescendo in music, the notes are all there-but the volume diminishes. So too, when living with dying, all the aspects of the person are there- but in decreasing volume and strength: there is the cognitive, the emotional, physical, spiritual, the vitality, -it’s all there, but lessening, week by week, day by day, and eventually, hour by hour. Sometimes, the spiritual aspect of one’s life increases as the physical aspect decreases. Dr David Kuhl’s research with dying persons demonstrated this with his research participants, and this is frequently found in the research literature and clinical experience.
The second metaphor is that of currency, of coins. If I liken energy to coins, simply put, there are fewer pennies to spend now. So if one only has say, 5 pennies left to spend, and then 4 pennies, and 3 pennies, one wants to be very mindful of how each penny is spent. As the pennies become more scarce, they become more precious. Spending them involves a lot of thinking, and prioritizing, and savouring.
And so, at this point of the journey, these are the metaphors that guide us and the lessons we are learning. There will be new lessons ahead, of that I have no doubt, but if we continue to view it as a time of new territory, with new possibilities, it is not so much a place to fear, as to explore, with information, with support, with trust and with grace.
Let us now move to the questions that the three of us created. There will be some interaction between the three of us in the answers.
Questions for Don and Deana
- How do friends interact with hospice...or is it only you and Don that do so?
Interactions with hospice depend on the services you need and receive. At this time, only Don is interacting with hospice through means of the Home and Community Care nurse. More services are available as our situation unfolds. If Don were to be admitted to the inpatient Hospice unit, friends and family are involved to the extent that they too are supported by the Hospice staff on the unit, through means of the supportive milieu.
- Denial from friends - how do you deal with it?
We don't encounter denial from people/friends so much as avoidance and it's an avoidance based on a reluctance to discomfort us and/or others. So one way to respond to that is to a) identify the presence of the terminal illness ourselves and b) to inform friends that (we) are prepared to talk about it. That way they are invited to ask more if they so choose, but are not compelled to do so. Then people can choose for themselves whether to proceed with talking about it or not.
- Is the fear of dying different from the fear of death?
Don considers this to be very different. He elaborated on Sunday, but not in written form....
- who/what is a DRE?
It is a standard clinical exam to detect prostate enlargement--a digital rectal exam. Jane asked this question because we have a person we call a DRE (our Director of Religious Education) and I couldn’t imagine her having diagnosed Don’s situation!
- what is your view of euthanasia...is it something you considered? Is it ever appropriate?
One view we share is that the desire for euthanasia is often borne of a fear of suffering, or indeed the presence of suffering. The entire purpose of palliative care is to alleviate suffering, so quality palliative care would diminish the request for that, for many people. Only 5% of Canadians either access or have access to quality palliative care. That means a lot of people are suffering needlessly, and that serves to increase the call for euthanasia. However, we recognize that not all suffering responds to medication; not all suffering is about treatable pain or symptoms. There are of course many other facets to this question that explores the profound and the fundamental issues. We could expand further in dialogue.
- Have you discussed what will happen to ‘you’ after your death? Do you think your positive attitude to death and dying has affected how you think about the afterlife? good question. This was answered by Don, but unfortunately nothing was written down....
- Regarding the metaphor of music.....are there forms or styles of music that are also present? In other words, is there any particular music that tends to be heard more and more often in your heart and mind? (even though in a decrescendo?) Deana This really made me think, and I realize that it is the symbol of the decrescendo, more than the sound of a decrescendo that provides my image and expands my understanding. The symbol is that long, waning line that compresses and converges. Everything is there. . . . but less and less of it as it approaches the tip.
- Regarding the metaphor of currency.....is it a regular decrease, or could it be that one day you have five coins and the next day you only have three....and then you continue to have three for many months? Do the pennies metamorph into gold coins?
Deanaoh yes. . . there are 3 penny days, and 2 penny days and every now and then a 5 penny day, and you seldom know just how much will be in that slim purse from day to day. And do the pennies ever morph into gold coins??? what a beautiful image. I hadn't thought about that, but now that you've raised that possibility, I'm going to watch out for the occasional gold coin. Thank-you for taking the metaphor farther into understanding than I'd gone before.
- Are there changes to your dreams?
Deana So I have interpreted this as "hopes and dreams", rather than exotic nocturnal trips. Don may think of the sleep related ones, and have a different response. I seldom "dream" at night, so I'll pass on that. But I do think of it in terms of letting go of life's bigger dreams, such as a golden chapter of retirement together or traveling together. oh yes. I would say that our dreams now have narrowed and tapered down. Current hopes and dreams consist of things such as: seeing another spring, hoping for an abundance of simple pleasures, quiet times, and a gentle passage. I have just planted several pots of spring bulbs that can be placed outside of Don's bedroom door in the spring. I hope that he gets to enjoy their jaunty colours as they will be the first declaration of spring. That's one way of bringing "spring" to him, early in the season, because his balcony gets lots of sunshine.
This really is a journey with surprises along the way. Deana I don't think Don will mind me sharing this illustrative vignette that he encountered just today at a health care organization. He asked 2 health professionals today, about "what are the downsides of dying at home"? Both looked baffled. Neither really knew how to respond. Don thought it was a perfectly normal question; it was for him, because he is exploring his future and trying to decide on preferred course of action. They had never been asked that question before. That partly speaks to the notion of carative, and curative focus. Health care frequently has a curative thrust; health care professionals set out to cure people. In that context, death is the enemy, and frequently is not discussed directly because that is the very aspect they are working hard to avert. A palliative focus on the other hand, is carative; it is already understood that cure is not possible, so care becomes pre-eminent. So even amongst health professionals employed in cancer care, frank talk about dying can be destabilizing and throw a surprise into the conversation. Somehow it is so much easier to be frank and open, within the context of palliative care because the "frightening thing", ie., death, has already been named and acknowledged and one can proceed with one's own questions and identified concerns.
Closing Words
Spirit of Life be with us
Giving us the peace of acceptance and understanding.
And the assurance in those things that never die -
Those things that pass from person to person
through the generations into eternity -
Especially Love.
In the spirit of Love we have gathered.
In the spirit of Love we depart.
(from In Memoriam: A Guide to Modern Funeral and Memorial Service
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