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Talking about dying with those who are dying 
Started by kathykastner
10 Dec 2011, 4:40 PM

I have a greater appreciation for cultures that build dying and death rituals into their lives, so that the when it comes to that end point, traditions can help work through the emotional stuff. The ancient Egyptians with their burial collections, Aboriginal ceremonial dances.

For we who don't have respected and comforting practices, I've been hearing and learning different ways the topic is broached. My friend, Lara, told her dad she was writing about the wooden horse she and her dad built together. That got 'em talking about life which got em talking about their end of life hopes and worries. Another started a memory book with her sister with termnal lung disease using pictures they'd put off organizing. Collaborating on favourite recipes worked for another friend. Karen Greve Young and her mother - diagnosed with terminal ovarian cancer - wrote a memoir together Love you so much.

I'm figuring that these coping strategies were the result of several conversations that were also sad and bittersweet. Be that as it may, for me, with dying and death such taboo (not to mention upsetting and scary) topics, it's a relief to have help approaching the end as a tribute to and celebration of life.

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Reply by NatR
13 Dec 2011, 7:42 PM

Death and dying are taboo.  Dont talk about it, dont mention it, dont think about it.  Dont prepare for it.  If you dont look, it wont happen.  People arent comfortable with preparation, frankly just doing a will is about as far as most people get.  I have to re-do mine as we speak.  I guess we all want to live forever.

But we dont.  When we are born we know that life will end.  Even knowing that end will come and not being able to talk about it - we often throw away the life we are given.  We waste it, we misuse it, we abuse it.  Yet when the end comes, its hushed.

I will never forget being with palliative clients in Long Term Care.  No one wanted to be with those people.  It was uncomfortable at best and terrifying at worst.  But all I could think of was if i was the one lying in the bed I would not want to be alone.  So many people in community care - living at home, will die alone.  Some prefer being alone at home to being with strangers - again alone...in facilities or hospitals.

I congratulate those who are learning to accept the finality of death and make it be part of life..by using memories, journals, albums, any way they can to save the essence of the person who passes.  We are all valuable.  I have learned a lot this past year from people like Kathy Kastner, Colleen Young and others who speak often and with humour - to engage conversation about end of life.  Its a process...one that I am working on.  Thanks for opportunities to learn. 

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Reply by Plum1
15 Dec 2011, 1:48 AM

You are reminding me of a very precious experience which I suggested and in which I then took part. Having heard on the radio of a person whose life-expectancy was limited and who decided to organize his own "wake" so that memories and celebration could be shared while he was still living, I suggested that we organize something in that spirit for a peer who was dying. She, in fact, wss handling her dying process in an open and accepting manner. She was part of my religious community, and was dearly loved by us all. We could not believe we were going to lose her and her many gifts at an age too young. We wanted to enjoy her for much longer. Everyone was invited to express in word or picture what her life had meant to each, and these were all compiled into a little book. Fortunately on the day we hoped to give it to her in person, she was well enough to be with us. It was very moving. She was delighted, and then amazed us as she expressed thanks for the special gift of each person who was living with her. We then sang together a song which she had taught us. We did all of this in a time-frame she could manage. Love was palpable in our circle around her. It was a wake I will always remember.


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Reply by kathykastner
17 Dec 2011, 10:25 PM

Natrice, thanks for the shout-out :)  Plum: I love  your story! A Living Wake! What a total gift to everyone (including me. for future reference)

I know of only a couple of traditions - the wake being one, and I've been to a Shiva in the Jewish tradition ( but would like to know more) and Cinco de Mayo I think is another. I'd love to know more about different cultural traditions.


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Reply by Cath1
07 Jan 2012, 4:17 PM

In my family death has occurred in a variety of manners:  those whose endings came suddenly and shockingly; those, like my Mom, whose lives slipped softly away but thankfully with a window of prediction that exposed a small glint of light and opportunity for final conversations; and those whose lives were lived for many months or even years with death hovering in the near distance, its eventuality certain, its final curtain gradually closing allowing a lot of time to ponder on life’s meaning and to spend time and talk with loved ones, to express love and gratitude, to prepare.

Yet, ironically, from my viewpoint, from my observation and experience, no matter the circumstance, there is never enough time or the right words or enough words to express to the dying person one loves, or the loved one to us, of the many coloured rainbows of love one experienced specifically because of the individual; the golden memories bequeathed by the individual that shine and shape the nature of a specific person, a specific life, specifically as one knows the individual; to share one’s shadows of regret or oceans of turbulent and intense emotions that stir one’s heart for those we love and so frightfully fear losing.

Death makes one wonder. Death causes one to wander sometimes aimlessly, lost, without any direction while seeking renewal and warmth and hope for the future and the tenderness and certainty of a kinder past, memories of a carefree childhood, a wedding day bliss, a child’s first breath, a friend’s laughter, a walk in the park with nature in all its glory, eye to eye, heart to heart, hand in hand. We long for the clear view of a lake with moonlight glimmering as one walks through an unknown forest, trees everywhere, towering above, enchantment of life hidden by a new darkness as one blindly feels the way through to a new place, a new life, without, without the loved one. Death.

There is no adequate preparation for death. It is final. The separation between oneself and a loved one is difficult to comprehend and it often causes one to re-examine one’s own spirituality or to establish new and comforting beliefs if faith was absent before the death of a loved one. I think it is natural to want to imagine and believe in an afterlife because the very thought soothes the pain of separation. With faith, one may believe that in the future one will be reunited with a loved one and in the meantime it is quieting to know that the person is angelically experiencing a new life in the hereafter as an angel awaiting our return. I believe my Mom is an angel in death because it makes sense to me as she was an angel to me in life. I have never been religious, yet I have always been a spiritual being and have an awareness of the spirit within us all. For me, I now dwell a lot on the afterlife and what I believe about it. Always I have had a philosophical approach to life, but now I analyze everything! I want to see my Mom again and cannot, and will never, believe that it is impossible. Death is a brutal truth and it is natural to seek a way to accept it and soften it, otherwise it feels like torture.

I believe that the imagining and the reality of endings and separations are impossible to fully grasp until the moment one experiences the truth of death in all its stark and uncompromising nakedness. Death exposes the most primal emotions within our souls and the bereaved are left wholly vulnerable to life. Each person’s life and death is unique and yet we all share the common denominator: life and death.

Having observed and indeed experienced different types of deaths of loved ones with circumstances surrounding each person as individual as were they and their lives, I see death as a living experience, a part of life, and only a part, although death is always significant, it is the anticipation and the consequence of the death of a loved one, or one’s own death, that leaves many of us inconsolably wounded and overwhelmed. I have had explicitly personal reactions to the death of each person whom graced my life in its different stages.  Since my Mom’s death, I am living more consciously than ever, and while this state of heightened awareness has definitely consumed me at times with feelings of unspeakable sorrow, it has also gifted me with a beautiful crystalline perception of people and the fragility of life and its importance in each moment.

I think lately of an aunt and uncle whose son, my cousin, committed suicide when he was 27 years old and I cannot fathom how they dealt with this ultimate loss, the loss of a child and by his own hand. Yet, my aunt, in her 80’s now, did live with the loss and her ability to share with me through tears and conversations the many complex dimensions of her personal grief, I am enlivened by her resilience and spirited commitment to life and all those she loves. There are examples of heroes surrounding me in my own family, and my aunt is certainly deserving of the title, and I am grateful to have had her guidance and support through the loss of my Mom.

Many years ago, my Mom’s eldest sister developed lung cancer. She was a mother of six children, and some of them were still living at home, dependent upon her when she passed away. The news of her terminal illness was a huge shock for her and her husband and children and her entire family, including my Mom. My Mom was living in Toronto when her dying sister was living in B.C., and my Mom flew to be with her, to console her and help her to prepare for the end. I don’t know how my Mom did it but she was able to be there for her older sister in exactly the way that was needed. My Mom had always talked openly about death and dying and she was extremely reliant on her Catholic faith to help her and her sister grow spiritually through the heartbreaking experience.

My Mom’s youngest sister was only 7 years older than I and she and my brothers related more to her as a friend and a “sister” than an aunt. She was killed suddenly in a car accident in which when she was a passenger of a car that was struck by a drunk driver who had hit a patch of black ice and crossed the centre median of the highway on a cold autumn night. The cars collided violently. My 33 year old aunt, a mother herself of three young children, a talented singer and a gentle soul, was killed instantly. The driver of the other car was also killed and left behind a baby girl. The tragedy was beyond description. Four children were left motherless. My grandmother had lost her youngest child; my Mom had lost her littlest sister. I was pregnant at the time with my third child who was born on my late aunt’s birthday the following spring. I honoured my aunt’s memory by naming my daughter after her as a small token of love.

My Mom and I helped one another heal through our mourning as we often discussed the nature of life and death openly and we talked about deaths in our family for years and years until my Mom died in old age. None of my kin whom have gone before me will ever be forgotten. Life indeed went on when some of my aunts and uncles and grandparents and cousins died, and yes, surprisingly to me, even when my Mom died. Life goes on with or without our cooperation. I have found that it is easier to work on accepting nature than trying to rail against it and now there are new generations resting upon the love of generations’ past.

I recall the funeral for my aunt, and being only 26 years old at the time, I remember feeling outraged that anyone could be so insensitive to even smile let alone indulge in laughter and happy reminiscences as people, those older and wiser, often do at wakes. Funerals are a celebration of life I learned as time went on, luckily in time for my Mom’s final farewell. Life is meant to be celebrated. Death is a part of life:  Life and death matters. We share the journey, the fear, the joy, the love, the sadness, the laughter, the loneliness, the excitement, the frustration, the mystery, the meaning, the depths and the heights, the entire human experience.

This is admittedly not the most cohesive piece of writing I have done in my lifetime, but I am learning that whatever is expressed by the soul, it is worthy. I hope may people here on this Virtual Hospice site will share their feelings and experiences with others because it helps to know we are in this life together and for all our differences, we have much in common. Our shared experiences and distinct perspectives of life and death help one another to carry on, to grow, to grieve, and to live.

My favourite band U2 in its song entitled “One” says it all so well:
One life, but we're not the same, We get to carry each other, carry each other, One . . ."

Let's continue to carry each; let's keep talking and reaching out to one another as this wondrously rich life goes on and on . . .

Happy New Year!:)

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Reply by kathykastner
14 Jan 2012, 2:20 PM


Thank you for so beautifully and lyrically telling your deeply moving insights and (heart-breaking) range of experiences. As you so eloquently said, in sharing we can help eachother.

I took heart from a recent conversation with Rodger Harding - a friend whose parents' attitude about their own deaths immeasurably helped him cope with their absence.

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Reply by Cath1
16 Jan 2012, 4:50 PM
Hi kathykastner:

Thanks so much for your generous message - it touched me deeply! I will take the time to read the conversation you linked above and will provide feedback once I have done so.

Last week I had surgery at the Women's College Hospital MOHS clinic to have a basal cell skin cancer removed from my face. I had a lesion for about two years and it been examined over the past year and a half by a few dermatologists. Initially, the lesion was considered to be a simple age spot and so the dermatologists decided to spray it with liquid nitrogen and they expected it would scab and fall off and all would be well. It didn't turn out as they had planned.

At that time I reminded these doctors that I had a history of skin cancer (basal cell) and I had had a couple of surgeries on a lesion on the side of my nose which ultimately was removed via the MOHS technique 21 years ago. In any case, the timing of this most recent lesion coincided with my mother's failing health and her admission to hospital in spring of 2010 and then to a nursing home where she became ill and later died in December of that year in hospital. During the time my mother's health was deteriorating, I paid little to no attention to my own health. In hindsight, I wish I had been as strong an advocate for myself as I was able to be for my Mom. My instincts about my latest skin cancer were correct, but I kept putting off following up and when I did I was not nearly as assertive about what I suspected the lesion was given my history and my gut instincts, and instead meekly conceded to the doctors' appraisal. Most definitely I would have been much more proactive had I been acting on behalf of a loved one.

The fact of my own self-neglect has caused me to analyze myself a little more deeply lately as I have had a little more "me" time to reflect as I rest and recover. It seems rather unwise and self-defeating to ignore the signals of ill-health or to not be as actively assertive in getting the proper diagnoses and treatment as I would for others, and yet that is exactly what I did.

I have made it a new mission of my own to pay closer attention to my own needs and to ask for help when I need it in future. I aim to be as strong an advocate for myself as I am for those whom I love, those whom I care about and those whose needs I always seem to asses as greater than my own in the moment. Recognizing, distinguishing and respecting that sometimes I will be the highest priority among the needy I identify is a new skill I want to acquire. It's a new shift in attitude for me but it is a healthy one, I believe, and one that will over time teach me that I am just as important as all those whom I love and whom love me, and sometimes, in certain circumstances, my needs will be more important that anyone else's. Strange to me, but nonetheless true.

I laugh to myself as I write these words as they feel foreign to me, so unfamiliar it is to me to consider myself first, and I admit that I struggle with the fear of becoming selfish and uncaring which would destroy the essence of who I am as I see myself, and challenge my very identity, but I suppose with practice I will learn as I go along to accept that I am no stronger or better equipped than anyone else and that I deserve to put me first sometimes. As I begin my first steps in this newfound way of being, please forgive me if I sway too far afield as I wander into the realm of self-care and create limits that seem to exclude the needs of others, as I know I will check myself if I ever stray too far from my comfort zone. I want to live as healthy a life as is possible for me and I hope by doing so I will show by example to my children, especially my daughters, that I am worthy of self-consideration, as are we all.

To all those here who are involved in caring for loved ones as they face the harshest of circumstances, some facing or have faced their own mortality, please remember what I had long forgotten, that you too are a priority and your needs must be honoured as well. Take time to do the things you need to replenish your body, mind and spirit by indulging yourselves in some of the kind care you so ably and selflessly give to those you love. Our loved ones would want us to care for ourselves first, and when we do so we find that we are reenergized, enthused, and fortified and so much more capable of caring best for the other people in our lives whom we love and whom love us. It's a win-win outcome all around, I am learning.

It's great to be alive even when we're dying. Life is precious, as are we. It's a wonder to be human, and it's equally amazing to acknowledge and to accept our human limitations along with our limitless potentials. We need love, patience, kindness and compassion for ourselves first so we can share these truly transcendent gifts of the heart and soul with others so that we may all experience life more fully, more meaningfully.

We seek wisdom and balance as we appreciate the splendour in the nature of all living things as they move and change and as we become moved and changed by the qualities of life and love. Love is bountiful, breathtaking and beautiful and each of us humbly deserve to partake in its blessings endlessly. Life is like a butterfly with wings aloft, soaring through the clearest skies of awareness, fluttering fragility in motion, multi-coloured hues of experience, evolutionary, fleeting, freeing, refreshing, we are all being transformed.
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Reply by kathykastner
19 Jan 2012, 12:43 AM

VHCath: you should be writing a  "Chicken Soup for the Caregiver's Soul'.

Taking care of oneself: so so important; Reminds me of a saying in my house as I was growing up: If momma ain't happy ain't nobody happy.

So sorry to hear about your skin cancer history. Very scary. Good that you're making an effort to take care of your needs.

Sending hugs.



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Reply by Cath1
23 Jan 2012, 8:57 PM
Hi Kathy Kastner:

Thanks once again for your kind message to me!

I've now had a chance to read your post about Rodger Harding that you linked here at the top of this thread and while I find it admirable that his parents could be so accepting of their deaths, and celebrate their lives as they prepared to face the end, it is still hard for me to imagine being anything like that were it happen to me or mine. "end", but only the end of life as we know it. I feel my Mom's love with me always as well because love cannot possibly die without our permission - it's just a fact.

I think having to face one's own mortality, or news that a loved one is going to die in the near future, must be one of the most difficult things to bear - ever. I agree with Rodger that our deceased loved ones are always with us. Death is the "end", but only the end of life as we know it. I am far less afraid of dying, having witnessed my Mom's last breath which was an excrutiatingly beautiful moment that convinced me beyond a shadow of a doubt that she was greeting a blissful new horizon, I remain firmly attached to this life and all those I love and cannot imagine having the same positive and resigned reaction as Mr. Harding's family.

Hopefully, I won't have to test myself in that respect for a very long time as I think even in light of what I believe, and have experienced, and indeed know, I will go down fighting the inevitable. Life, each moment we have on earth, each person we love along life's journey, every aspect of existence is unbearably precious to me and that emotional and primal attachment is naturally difficult to let go.

I know I contradict myself at times as I struggle to accept the inevitability of death, but for some of us like me, it takes a lot of work to get to the point where we can simply flow with the nature of life in all its beauty and pain and with death in all its beauty and pain. I hope I can acquire the courage and wisdom to accept my end with grace and enduring faith when my time here on earth is done. I want to live and wish we all could live forever. Perhaps after I die, I will realize that I need not have worried as my wish for us all will be fulfilled.

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Reply by moderator | modératrice
30 Jan 2012, 7:28 PM
Just found this article on AgingCare.com that might be of interest for people reading this thread.

Words of Comfort: What to Say When Someone is Dying
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