by Ken Clarke and Lois Brummet, RN, MSN, CHPCN(c), DVHS Hospice Volunteer
For the past few years I have had the privilege in my role with DVHS of lending my voice to advocate for excellence in the delivery of hospice palliative care and end-of-life services right here in our communities in the South Okanagan. I have sought to recognize and celebrate the health services and level of care we do receive in our province and to express appreciation for those who serve on the front lines—our first responders and medical staff; it’s not perfect but we are blessed to have the services available to us. At the same time, I have also said, ‘we need to do better’, especially when it comes to helping those on the palliative journey, in providing beds and services and an environment which allows patients and families to experience not only medical care and comfort but to do so in the best possible setting.
These are conversations we need to continue to share. My friend Lois Brummet speaks to this as she shares some thoughts below; thoughts that invite us to join the conversation and in so doing to continue to advocate for the best care possible and be part of the solution.
From the Penticton Herald Letters to the Editor May 16, 2017
“…having Moog and Friends Hospice House in our own back yard is truly a blessing as this allowed us to spend quality time with our parents rather than having to travel long distances to see them.”
This family’s sentiments are an example of why people in Oliver and Osoyoos ask “Why are the beds in the Supportive Care Centre (Osoyoos) not being used for a Hospice House?”
Does anyone really know the answer? We have been told that additional “spaces” would be added for palliative services. We have been told that the long term/complex care facilities would be providing much needed and required palliative services. Is there any evidence of this occurring other than the platitudes offered by administrators and politicians? With the rapid building going on in both communities and the population average age higher than in most communities, what is holding up the parade? (It’s a fair question.)
The efforts of the Desert Valley Hospice Society providing services and support programs, given freely by trained hospice palliative care volunteers, need to be recognised and supported locally and provincially. Remember the squeaky wheel? Let’s turn that grind into sweet, calming chimes for people with life-threatening, life-limiting health concerns and their loved ones.
To the readers of this blog, I am interested in your thoughts, your ideas and your knowledge of progress being made to bring additional hospice beds and services to our communities. Some of us are aging quickly and losing patience with the “5 year plans.”
On a brighter side, we know that spring is coming; it is just held up in a traffic jam.
Keep well and live well until your end.
by Ken Clarke
The following is an excerpt from a talk given at an Volunteer Appreciation event.
I really didn’t know what to expect on the other side of the door; there was for me that moment of anxiousness. But I had agreed to this volunteer opportunity and the call indicated there was a sense of urgency in responding, so Janice and I went, knocked on the door and quietly slipped inside.
Bill (not his real name) was lying beside his wife in a hospital bed, holding her close; she was in her final hours of life. He noticed us as we made our way toward the room, “You must be Ken, I’m so glad you came.”
For the next twenty minutes or so we listened as Bill shared the story of their life together. We interacted with him for a few minutes, offered some words of encouragement, comfort and hope and then left so that he could spend his final moments with his wife.
Stories like this get repeated every day in large centres and small communities as volunteers come alongside to support and encourage or provide practical expressions of service and kindness.
Today is about recognizing, appreciating, and honoring the commitment and dedication of our volunteers. Whether you serve on the front lines supporting others--being a caring and compassionate presence, often at time when they are feeling weak and vulnerable and afraid; or if you provide a service that lifts and inspires others; or if you serve behind the scenes, providing administrative support or practical kinds of assistance that makes the environment or surroundings easier or more beautiful, in your own way each you give of yourself, your time and energy and resources to invest in others; to make a difference and make our communities a better place.
There is very little in life that brings as much satisfaction and joy than when we give of ourselves to come alongside, to bless and encourage, to support and lift up another person. To serve as a volunteer is one of the highest callings in life. It is sometimes demanding, sometimes challenging and draining, but it is one of the most noble, enriching and rewarding experiences we will ever have.
Look at any thriving community, dig a little beneath the surface and you will discover a group of dedicated volunteers. Volunteers are the root of a strong community! It takes all of us working together, giving and serving to make our communities a great place to live and work and play.
When we left Bill that evening, there was that moment when I sensed the short time we had invested that night was worth it; in a small way we had made a difference. A few days later I received a card from Bill, in it he wrote: Ken, I just wanted to thank you and your wife for coming to the hospital on such short notice and provide (my wife) with that spiritual comfort that she had asked for. I left it to the last moment and would not have forgiven myself but suddenly you were there. It gave me such comfort as her final hours ticked by.
This is the stuff I live for!
Sometimes we get a note of thanks or a word of encouragement, but sometimes our efforts seemingly go unnoticed. But not today! Today we honor you; we celebrate your contribution; we express our appreciation and simply say ‘thank you’! It is a privilege to be among you; I join in the celebration with you and want to be among those who say ‘well done’!
To all of our volunteers at DVHS, who serve in communities, I say to you, 'thank you', 'well done'!
by Lois Brummet, RN, MSN, CHPCN(c), DVHS Hospice Volunteer
How often have we heard “Be careful what you wish for!” A wish for our governments to provide palliative care to all Canadians who need it, wherever in Canada they may live. Wishes will remain dreams unless we take action. What action, how or when or who? We are reminded to never underestimate the power of ONE.
Since attending an End of Life conference in Kelowna sponsored by the Respiratory and Palliative Care services at KGH in 1993, I have been saying to all who will listen, people with life threatening diseases should be able to access hospice palliative care services at the time of their diagnosis. “Well he/she is not dying at the moment.” This statement suggests that only when physical symptoms and/or pain are evident, a referral to hospice is appropriate. However, all our mentors in the hospice palliative care movement, Dame Cecily Saunders, Dr. Elizabeth Kubler-Ross, Dr. Balfour Mount, Nurse Clinician Pat Porterfield, Dr. Michael Downing state that humans are more than physical beings. We have a physical, emotional, social and spiritual dimension. At the time of diagnosis or receiving “bad news” our emotional, social and spiritual pieces are hammered with the shocking blows.
How do we survive? Do we pray for cure? Do we rant, angrily accusing someone/ something as being responsible for our predicament?
“I am only one but I am one. I cannot do everything but I can do something. And I will not let what I cannot do interfere with what I can do.” Edward Everett Hale.
Each one of us can do something, there is a long list of actions to pick from such as, praying for the grace to survive and journey through. Attend any number of prayer groups hosting 12 hours of prayer for palliative care May 4, 2017. Say “HELLO”, attend the interactive game to help start conversations about living and dying well. Be sure to ask a family member, a friend, a neighbour to join you for a fun filled lunch for “free”.
Support the fundraising activities of your local hospice society, write letters to the Editor describing the benefits of receiving hospice services via local hospice volunteers.
Expand the power of one to ten. Pledge to talk to ten people about the Advance Care Planning presentations and workshops offered in our communities.
These are just a few ideas; more will come to mind as you ponder your own options. “Be the change you want to see happen.”
Since 1993, I have seen progress. Today we see more articles, educational pieces extolling the benefits, both personal and financial of earlier referrals to hospice services. The Palliative Approach to health care is more evident in community health as well as in facility care. Curriculums for continuing education for Personal Care Aides are developed and readily available. The number of community clients seen by our palliative care nurses is growing. The Bereavement Follow up telephone service is providing much appreciated listening time by our hospice volunteer.
The NCARE program, a well sponsored and supported research study is placing trained hospice volunteers with identified frail seniors living at home. The volunteers will assist the study participants to maneuver through the health care system. Hence, these seniors will be known and their need for hospice palliative care services will not be delayed; an earlier referral will happen.
by Lois Brummet, RN, MSN, CHPCN(c), DVHS Hospice Volunteer and Ken Clarke
“It shouldn’t be like this.” Her words expressed not just disappointment but a level of sadness as she shared with me how upsetting it was to have a roommate in one of our long-term care facilities pass away in the night, all alone. The staff was aware her time on earth was coming to an end and checked periodically, but no one was there to hold her hand or speak softly to her; to be that comforting presence in her final hours.
It’s a scenario that repeats itself far too often. We can do better; we must do better!
We are privileged to having caring health care staff to meet the physical needs of the dying and many provide a measure of emotional and spiritual comfort and support, but they will be the first to tell you that the demands of the job do not allow for the time needed to sit vigil; and for some they do not feel adequately equipped to provide this kind of support.
It may be that some choose to leave this world on their own, choosing perhaps to spare a loved one from being there at the end; it can be very sobering to watch someone breath their last breath. But knowing how real the fear of death is; that journey to the unknown, I cannot help but think we do a disservice to the dying when we fail to provide this basic kindness. Desert Valley Hospice Society has trained, compassionate volunteers who can help meet this need.
The truth is, there are times when we do not want to be alone; for many, this is especially true when actively dying. Hospice volunteers accompany clients so they are not alone in the last days or hours of life.
A vigil might allow family members to get some sleep, enjoy a meal and take a break. For those who don’t have loved ones by their side, a vigil can provide the kind of comfort that can only be offered by another human being.
Vigil volunteers offer companionship and presence. They might dim the lights, share quiet music, read or simply sit and hold hands. Some vigils are held overnight to allow family members to get some much-needed rest. For clients with no one by their side, vigils might last for several days, with vigil volunteers tagging in for two-hour shifts, offering around the clock support.
From my (Lois) diary:
Although Tony had said “goodbye” to his long lost - newly found love, distance kept them physically apart. I answered Tony’s bedside phone and told Tony it was his love, calling to say good night. As I held the phone in one hand and had my other hand in Tony’s over his heart I gave him the good night message. Within seconds I knew that Tony had died. I felt like a conduit for their love, from earthly love to heavenly love.
by Ken Clarke
To love at all is to be vulnerable.
Love anything and your heart will be wrung and possibly broken.
As human beings we have within us the incredible capacity to love; we were made to love and be loved, to know and be known. It is this ability to experience love, to give and receive love that gives to us our highest purpose and greatest joy.
Love allows us to connect with one another in deep and meaningful ways; as marriage partners, as families and friends and in community with one another. In such relationships we do indeed find meaning and purpose and great joy as we journey through our days on earth. But as C.S. Lewis noted: To love at all is to be vulnerable. Love anything and your heart will be wrung and possibility broken.
In this world, we live between love and loss; love inevitably leads to loss and grief--they are inseparable. We grieve because one who was loved, with whom we have shared our lives has been taken from us and there is often a profound sense of emptiness we experience, a void that leaves us wondering, ‘will my heart ever heal’?
Some would say grief is the cost of loving. Dr. Alan Wolfelt, author and Director of the Centre for Loss and Life Transition makes this observation: Grief is predicated on our capacity to give and receive love. We cannot avoid this paradox. C.S. Lewis writes: If you want to make sure of keeping it (your heart) intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.
Henry Nouwen wisely observes: Every time we make the decision to love someone, we open ourselves to great suffering, because those we most love cause us not only great joy but also great pain. The greatest pain comes from leaving. When the child leaves home, when the husband or wife leaves for a long period of time or for good, when the beloved friend departs to another country or dies … the pain of the leaving can tear us apart. Still, if we want to avoid the suffering of leaving, we will never experience the joy of loving. And love is stronger than fear, life stronger than death, hope stronger than despair. We have to trust that the risk of loving is always worth taking.
As hospice volunteers, you serve on the front lines in providing support and encouragement when love and loss collide. You provide an invaluable gift to one who is nearing the end of their journey and their family members and you enter in to their joys and sorrows. Your heart of compassion allows you to offer grace and kindness at one of the most difficult times of life and to continue to walk with family through their loss.
As a Director of the Society I am continually amazed at the courage and compassion you exhibit as you do the work of a hospice volunteer. You are making a difference at a time when kindness and grace matters most. I want to thank you for all that you do and encourage you as you give selflessly of your time and energy to bless others in our community!
At the Desert Valley Hospice Society, we celebrate such loving relationships and we offer support and encouragement when the journey becomes difficult; when you or a loved one is dealing with a life-limiting illness. Our trained volunteers are available to come along side and walk with you. We also offer Bereavement Support for those who have recently lost a love one to death. If you are reading this posting and know of someone who could benefit from the services offered by the DVHS, please do not hesitate to contact us.
by Ken Clarke
Despite recent attempts to move to a more generic, politically correct expression of ‘Happy Holidays’, the words ‘Merry Christmas’ still roll off our tongues with ease and great frequency this time of the year. It’s an expression of joy, good wishes and good fortune from one person to another.
For many, Christmas is just that, a season filled with joy; gathering with family and friends, a shared meal and expressions of kindness given and received. It’s a time of the year when we reflect on memories of Christmas past, the blessings we currently enjoy and the hope for happiness as a new year begins.
But for some, this Christmas may be one where there is an absence of joy. For those on the palliative journey--themselves or with a loved one, the realities of a life-threatening illness may make it difficult to find any measure of happiness. It’s not because we don’t to experience the wonder of the season, but difficult circumstances have a way of draining us physically and emotionally. And…we may wonder will this be our last Christmas together.
For others, there will be an empty chair around the table this year; one who has shared past Christmases is no longer with us and that reality brings some sadness. Grief is often felt more deeply during the holidays; Christmas just doesn’t feel very merry.
This is the path of shared humanity; a path we have all experienced or we will experience, and as such it is also the place where we can find in one another, support and care and encouragement even when, especially when the path is difficult. Desert Valley Hospice Society exists to provide that support to those dealing with a life-limiting, life-threatening illness--those on the palliative journey and their families or caregivers.
Our trained Hospice volunteers are available to come alongside and offer emotional and practical support. If we can encourage you or your family, please don’t hesitate to contact us; support is available throughout the holiday season.
It’s my hope that no matter what your circumstances, you will find joy this Christmas; in the company of family and friends, in shared memories and through the gift of kindness given by those we love and even the kindness of stranger.
To the friends of Desert Valley Hospice Society, our supporters and community partners and especially our volunteers, on behalf of our Board of Directors and staff I want to wish you all a Merry Christmas!