My Hospice Experience
By Coryll Harwood
Shortly after moving to small town Ontario, I was asked to sit with a gentleman in the nursing home while his family went to Church Christmas Sunday. The family did not expect him to see out the week end. I was asked to stay from nine until noon.
The nurse at reception escorted me to the room and with a wave of the hand towards the bed, departed. The gent was comatose and lay quietly, his face turned toward the door. Looking at him, I caught my breath. It could have been my father lying there, the resemblance was so strong. My dad had been dead for 21 years!
I went in, pulled a chair up beside the bed, took his hand and quietly talked to him, to reassure him of my presence. He seemed peaceful. I stroked his wrist and focused on him, surprised that the only thing I knew was his name. Dozens of questions tumbled through my mind. Where did he live? Was he a farmer like my father had been? Was his wife still living? Who was his family? What had he done all his life?
After an hour, I explained to him that I was going to go around to the other side of the bed. My reason was simple; I wanted to see his profile. My dad had a hooked Anglo-Saxon nose and I wondered if this gentleman had the same nose shape. He didn’t. I couldn’t help but smile. Then I noticed how much his hands were moving, as if searching for something. He seemed suddenly agitated. I returned to my chair, took his hand again and talked quietly. He settled down again immediately.
I hummed hymns to him and Christmas carols. Another hour passed. Getting bored, I picked up a pocket-book sized magazine I had brought in. With one hand in his, I began to read, holding the magazine in my other hand. In short order, he seemed to get agitated again! Setting the book down, I focused back to him and marveled that there seemed to be some form of miraculous communication going on between us. Not a word was spoken but he seemed to know when my mind wandered off in some other direction. I thought about this phenomenon for a quarter of an hour, mesmerized and thrilled with the prospect. I had to test this theory again. I picked up the book, still clutching his hand and began to read. Within a minute, his hands searched and agitation resumed.
I have never forgotten that exchange. I hated to leave and stayed until well after 12:30 pm. The man never opened his eyes. He died at 5 pm that afternoon but he left me with a legacy that I truly cherish. I love the idea that as spiritual beings, we have the ability to communicate at some profound level that transcends our intellectual knowledge. I never think of this gentleman without a warm smile spreading across my face.
– Coryll Harwood
On The Bay Magazine Better Living
June 24, 2011
On The Bay published a beautifully crafted and poignant feature spread on Hospice Georgian Triangle. Many thanks to Jeoff Shearer, Publisher, Janet Lees, Editor, Cecily Ross, Writer and Richard Galloway, Photographer for their commitment to community and the respectful way they told our clients’ stories.
A Life-threatening Illness- by Gloria Kropf Nafziger
You were emphathetic. Persons with a terminal diagnosis were not dying, they were living with a life-threatening illness. I had heard you teach it, had heard you lecture about this in, and out, of the classroom. No one should take away someone’s life prematurely and the language that we used too easily did this, you said. So I should have known that when you received a cancer diagnosis you would not want to be defined by that diagnosis. I should have known.
What was confusing about this part of the story was that while you were not defined by cancer and by an imminent death, all about our life, it seemed was. I mean everything we did took on new meaning. “This might be the last time we/I get to plant bulbs in the spring”; “this might be our last chance to travel”; “this might be the last time I am well enough to make love to you”; “this might be my last walk”; “this might be….” And because it “might be the last” it took on a power that I could only be subverted by. “I do not want to” could no longer be relevant because you wanted to and “it might be the last time.” How could I be so selfish? How could I be so uncaring?
No, you did not call me selfish; you did not name me uncaring. I could do the naming quite well all by myself. I was the one who resented this life-threatening illness, I was the one who wanted it to go away and not interfere with my life.
You seemed resigned to it, no, not even resigned, accepting that death was a part of life. You were grateful,you said, to live with this life-threatening illness because it gave you a chance to say and do all the things that might not have been done or said had you not become ill. Do not misunderstand me you did have your moments of rage at not having enough strength or enough energy for the day and the moment. But most often you were accepting and tolerant and understanding. You saw the humor in the uncomfortable silences, and you played with people’s discomfort. You saw the pain and exhaustion in the nurse’s eyes and you did or said something to remove the weariness for a time. You accepted this diagnosis. You accepted this life sentence, this sentence to end your life. But you did not accept ever that you were dying, until you were, of course – which was not a moment before you took your last breath and we sang the last chorus of the last song.
Eyes of Meaning by Gloria Kropf Nafziger
How does one jump in on the middle of a life sentence? It is like standing in a beautiful pillow of clouds and suddenly feeling the bottom fall out. It is a cloudburst over which you have no control.
It was a September; no it was an early October day in 1994. A typical, I suppose, fall day in Ontario. Some rain, some cloud, and some sun shining through onto the everchanging leaves. I sat through the sun, through the cloud, through the rain in the hospital waiting room, while you had surgery. A routine hysterectomy, they said. Yes, you had a growth, a cyst they said. It had a long name this cyst – a long medical term that I cannot remember. They said it was like a hairball. It was harmless really, they said on a sunny day in July when they booked the routine hysterectomy for early October.
SO as I was saying, I sat waiting in the waiting room to go and see you in recovery. The doctor said she would talk to me after surgery and then I could go and see you in recovery or back in your room. So, I waited like a clock, which stops for no one, I waited. I waited wishing that time would either speed up or slow down. I waited.
Reading even a short story when you are waiting is an endless task. The words and phrases must be read and reread because the focus is really on the waiting. On the waiting for the door to open, or perhaps for the door to remain closed. I wonder if anyone who has ever waited in the hospital waiting room knows what he or she is really waiting for. I know for certain that I didn’t.
After the clock had moved from one hour to the next and the next and the minute hand had slowly ticked from one second to the next, she came to the door. The waiting came to an abrupt end. “Gloria,” the nurse said, “the doctor would like to talk to you.” I didn’t like the sound of it. The words with no meaning, screamed meaning at me.
What could those meaningless words say, I wondered? I knew in a moment it was not the words that had spoken to me, it was not the words I heard, it was the eyes. The eyes dulled from speaking meaningless; meaningfilled words time and time again to the waiting room loved ones. The eyes that were trained to betray no meaning that in this very lack of betrayal yelled, in fact screamed meaning.
She spoke; the doctor spoke before I even had eyes to focus on her prescience. Before my awareness was with her she spoke. “I’m sorry Gloria – it’s not good.” I felt let down. That’s all she could say — its not good. Not good? I already knew that. I saw it in the nurse’s meaningless, meaningfilled eyes. But then – then the words flew out of the doctor’s mouth like diarrhea flowing and overflowing a child’s diaper. I wanted her to stop and to continue.
How filled with contradiction can one person be? I was suddenly pulled back realizing my willing the diarrhea to stop had not ended the flow she was still talking.
“She’s in recovery now,” she said, “she’s waiting for you.” “She doesn’t know anything yet.” “ If she asks tell her the surgery went well.” “I’ll talk to her in the morning and explain it all”
Then she was gone.
I stood stunned for a second and then I composed myself. Yes, I thought, yes, I could do that I can tell her the surgery went well. I won’t say you’re going to die. I won’t say you have cancer. I will just say the surgery went well, and I will smile. I will not let my eyes betray me.
I went to the phone. I called Barb. I said, “could you come? I need you”
From Wife to Widow in One Breath
By Eleanor G. Pask RN, EdD
All human beings and animals take two breaths of enormous substance and significance. The first of course is the initial breath that an infant takes. This breath begins not only the journey of life, but also the mystery of life. At this point in time, no one can predict what lies ahead for this tiny being, but life away from the protection it has known in the mother’s womb has begun. Not only does this breath begin the life of an infant it dramatically changes the lives of all those around. A wife becomes a mother, a husband a father and so on. This first breath has a resounding effect, joy, love, a new world view and a new search to make everything right for this new being. The journey begins and the mystery slowly unfolds.
Between the first and last breath we tend to take breathing for granted, but that is only until the journey of life approaches the end, and we prepare to take that final breath. It is then that the person takes that second monumental breath, the last breath. Here begins the mystery of death. Once again those remaining are faced with cataclysmic change and mystery. A wife becomes a widow, parents are bereaved, a husband becomes a widower and so on.
Until the time of my husband’s and life partner’s death I had a pretty comfortable world view. I knew who I was; I was a wife, a mother, a successful health care practitioner with several university degrees. I had worked nearly all my life with chronically and terminally ill children and their families. I had attended, participated and run several workshops and conferences on death and dying. I had witnessed first hand the devastation of a family when a child dies. I thought I understood, but in retrospect, I didn’t really. We have always maintained in health care that you didn’t need to have your appendix out to care well for someone who has just had an appendectomy. We didn’t feel it was necessary to have experienced both the excruciating pain of labour and the subsequent joy when the baby is in your arms, before a nurse could care for a new mother. But there is something very different about death. Now I believe that unless you personally have experienced the death of a loved one it is impossible to truly comprehend the enormity of that last breath. We talk openly about the “stages of bereavement”, but that is textbook talk. Life and loss don’t really honour those prescriptions. It is easier to talk about the more superficial effects and to try to categorize feelings and emotions, but the depth of what really happens remains undisclosed. Even superficial effects can be catastrophic. Everyday decisions become difficult and can resonate in an unreasonable way. An unthinking word or phrase can exact an enormous toll. We know, or we think we know, what to expect – but we don’t. We are never really truly prepared for what will happen to those remaining when that final breath is taken.
There are things about death that no on talks about with honesty. One of the paramount effects is the overwhelming change for those who remain. Who you are and suddenly who you have become are much less certain.
Just one breath. That is all it takes to forever close the chapters of a life and open the next blank page for those remaining and living with loss. Unraveling the mystery of death now begins. I have often used the analogy of the book of life. The chapters have been written up until the time that the loved one takes that last breath. Now the entries become more difficult and less certain. What can I write? What will my first word be in the next chapter? Is it I, or is it still “us” How do we know when and how to change? In fact what are we changing to? How long do we leave the pen down before we can pick it up to write?
No one can prepare you and no one really does. The lessons of death are intense. I don’t think we are afraid of death per se. Death is all around us and from the time our parents explained what happened when the family pet died, or we saw the first animal dead on the road, we have been surrounded by death. We have also witnessed suffering and as we grew older we questioned the purpose of suffering either personally or at a distance, but came to understand it as a vital part of life from which we cannot escape. We know intuitively that God will help those who suffer to be strong and to cope. The actual death and the last breath become the source of all immediate concern. My sense, however, is that death is not the real issue here for long. It is, in fact, the sense of loss and the overwhelming sense of mystery and uncertainty about life. Sometimes our own mortality feels threatened, and sometimes it is even desired, as we face that uphill struggle. Loss in itself poses a mystery, change and renewal. Dealing with the effects of loss can be soul destroying until we begin to take those first difficult steps and are able to pick up the pen and inscribe those initial painful words concerning who we are to become and what our life will now look like.
With loss comes a sense of overwhelming isolation. Who we were has been shattered. It is difficult to pick up the pieces because they have to be put together in a new way to reflect who we will become. There is a sense as well of spiritual and emotional chaos. The order of life has vanished and a new order must begin. But it will take time, a long time, and we cannot rush it.
What becomes problematic is the fact that internally while we must reach out and find our place and our new world view, our family, friends and business associates also begin to view us differently. That is emotionally upsetting in many ways. We are no longer a couple; no longer a “Mr. and Mrs.” We have now become a widow or widower. It becomes more challenging for our friends to know how to deal with us. It is true we are still their friends and they are ours, but they often question how we should be included now in events that invite couples. This becomes part of our journey as well. Where and how do we fit in? What should we attend on our own? What do we say when we are invited out if we are the sole single person? Do we join or not join? All these questions have to be addressed and answered. Sometimes the answers differ and that is perfectly alright.
With time, some parts of the journey become easier, but some become harder. There remains always that mystery of death and how just about everything changes. This is the part that no one talks about or prepares us for, the overwhelming loneliness and emerging fragmentation of what was previously very secure. We begin after the death to gradually resume the mundane tasks of daily living. To all intents and purposes it seems to our friends and coworkers that we are getting on with life and coping well. That façade is fragile. Outward appearances do not reflect the inner struggle even just to present this image.
Those who have experienced the death and loss of a husband or wife speak a language that is essentially different from those who have not. We are no longer afraid, or hesitant, to discuss the far reaching effects of the death and the personal experience of profound loss. That we now speak a different language and use different words while not being afraid to do so is something we begin to understand. Even the closest of friends may not be privy to what lies behind our mask.
Over time it is not the process of death that remains with us as much as the loss. Modern technology has turned the process of death into the problem of death. In many instances death is the problem that we must try to prevent at all costs, sometimes with disastrous results. But the truth is that the images of the suffering and the death, even a very painful or protracted one, fade. Our loved one’s last moments become less vivid, but the emptiness of loss remains. The image of the last breath, however, remains always, but it is illuminated by the deep and holy peace that enveloped our loved one as the last breath quietly slipped away. He has begun a new journey with new mystery, just as we who remain must begin ours
It becomes essential that we struggle to define a new place for ourselves, while honouring and being thankful for the wife or husband that we shared so much with. Gradually we take up this task. Attention has been paid to coping with the mystery of death, resolving the grief, and trying to understand the loss, as priests, rabbis, counselors, grief therapists, and authors try to help, and they do. But the major task remains for the one who has suffered the loss to cope with the mystery of death and the profound effects of their grief while striving towards a new life. We ask many questions about the mystery associated with death. Questions such as why, what happens to the one who has died? One’s faith will provide answers, but cannot totally dispel the mystery. A part of us may remain unsure, and we may find that for a time our faith may falter a bit as we struggle. One’s faith, whether Christian, Jewish, Muslim, or Buddhist will help us grasp some of the answers. Our friends will be there for us as well. The major task, though, remains for each of us to accept the mystery of death with all is many unresolved questions and to accept the challenge of modifying our world view to remember the loss, respect the overwhelming and life altering effects and to accept the help from our God and others.
In time we can turn that loss and all that it caused into the ability to reach out to others who are about to be faced with the mystery of death and the effects of loss. We speak a shared language emotionally and spiritually. Above all, what we do not realize at the time is that through all of this we have received a final gift from our loved one, the ability to reach out to others as they face the last breath of their loved one and begin that difficult journey. This gift heals and will carry us forward as we turn the page and enter new words in our journal of life.
A Day in the Life of Cancer
It was Saturday morning, a cold dreary fall Saturday morning. The date is as cold to me now as the emotions were mixed that day in the kitchen. I was there with you and we were joined by Ben, with the clippers. Joanne, your beloved daughter arrived to join in the activity. This activity that defied illness, that dared cancer to speak.
We were going to have fun! Giggling and planning for the mohawk began as Kaitlyn and Lora took turns cutting off hair on the sides of your head. This was much more fun than picking up handfuls of hair from the pillow. We would do it no more; you were clear about that. You would take control. You would decide to have no more hair. You would not let the cancer treatment decide.
We had planned this day for a long time. My girls, Lora, Lisa and Kaitlyn were involved with the planning. The time of laughter-filled planning, about when they might get to shave your head had ended, the day had finally arrived. The fun had begun. But where was Lisa? Lisa was missing. Where was this impervious, moody daughter of mine? What was she doing?
After calling and looking, Lisa was found in the living room on the couch. She was busy with her favourite form of escape, a romance novel. Hugs, tears and words of encouragement finally pulled out the words. “It’s not fun anymore. ” It’s not fun any more; the words seemed to bounce against the walls and echo off the ceiling. “It was fun,” she said “ only when she wasn’t sick, but now she is sick, too sick.”
The smiles of denial and the rose-coloured glasses I had been wearing were shattered in that moment. The laughter at the mohawk in the kitchen called.
I was stunned, hanging between the world of claiming control and the world of control’s impossible grasp.
Gloria Kropf Nafziger
Life Threatening Illness
I wonder and I think I hope that this writing may destroy any illusions that you may have had about me the devoted caregiver. I wonder you see if you really did believe me to be the all caring person that I wish I was and hope that for the most part of was and know that often I did not feel like. I want you to know, I especially want all you caregivers out there who think that it is important that you do the best job possible for the one you love, that you are allowed to feel too!
I mean what would we be if we could not rage or at least feel rage. That we could not grieve deeply or at least feel deep grief. What would it be if we did not feel frustration and negation and denial and reproach and anger … do you know what I think it would be? Do you know what I think it is?
I think then we too are living with a life threatening illness. It is not an illness that necessarily leads to physical death but I think, from my experience of living on the edges of this life threatening illness that is may be worse. There is no escape from this illness. This life threatening illness that eats the soul if not the body. This is the life threatening illness of I can do it all and I am strong and I do not need your help and I am fine. It is the illness that led me to have powerfully sore shoulders, an aching soul, and a fixed smile. It is the life threatening illness that prompted Bonnie to tell my friends to not let me drink alchol after she died. She was afraid my illness would consume me as I lived. It was the threat of that illness that prompted her to tell me over and over again that I needed to claim life. It was this threatening illness this cliff that called me to jump that could only be addressed by the medicine of compassion and care. To those of you who noticed my symptoms and stuck in when it wasn’t much fun to be near me – I say thanks –
Gloria Kropf Nafziger
I sit here today in this my home, and feel completely and utterly alone. I feel no energy here. No recognizable spirit of hope. My only companion in these days since your birth – since your departure from this world, since the presence of all the midwifes those how many days ago, is MR grief. He is not comforting, he does not help me find a way through, he merely sits on my shoulder reminding me of my confusion and my uncertainty. I see work to b done. However it is distant and shallow, taking a form that I cannot make sense of. Offering me no direction. Where I wonder is that sense of going and doing that I engaged in during the last days, weeks and months of your life.
I remember I think going through the motions, doing what needed to be done. There were children to pick up and drop off. There were meals to be eaten. There was laundry to be done. There were tears to be shed. There was you to hold and comfort. I remember I think going through the motions of completing those tasks. Where as that ability gone? Why can I no longer go through the motions? I spend hours, I think, standing here, standing in one spot. Mr. Grief on my shoulder. How many tears, I wonder, does it take to get Mr. Grief to leave to get off my shoulder? To allow me to stand, to breathe fully, to stop standing and staring? Mr. Grief gives me no answer. Allows me no room for discussion just sits quietly heavily on my shoulder, holding me present to this time, this place, this vacuum.
Gloria Kropf Nafziger