When we are caring for a loved one who is experiencing a terminal illness, how can we best offer our support on their final journey?
We want to provide the best possible experience in these challenging circumstances, but how do we do that?
Fortunately, two full-time hospice nurses with experience both in-home and in hospital situations, have written a book about the attitude we need to have in dealing with someone who is dying.
In their book titled Final Gifts: Understanding the Special Awareness, Needs and Communications of the Dying, authors Maggie Callanan and Patricia Kelley, offer a clear and comprehensive guide to bringing comfort to those who are making this final metaphysical journey.
Callanan and Kelley emphasize that hospice is not simply a place, but also an attitude.
Historically, hospices were initially a part of the medieval landscape, providing rest for travellers as they journeyed on pilgrimages to holy sites. In the late 1800’s, two Irish nuns revived the concept in Europe as a compassionate opportunity for travellers who were weary or ill.
In 1967, Dame Cicely Saunders, a British doctor, founded the current hospice movement with the conversion of an 18th century hospice into the modern St. Christopher’s Hospice, in a suburb of London.
Dame Cicely has said that hospices are: “…for the care of the dying on a metaphysical journey from this world to the next.” Addressing those who are housed within, she offers these words of solace:
“You matter because you are. You matter until the last moment of your life, and we will do all we can not only to help you die peacefully, but also to live until you die.”
This affirmation helps us to understand some goals of treatment of the dying:
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To keep them in the environment which is least threatening. For most people this will be their home, in which they are cared for by family and friends.
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To give them as much information as they wish to have, no more and no less, about their illness, about what is going on in their body and how the illness and its symptoms are being treated. About how their disease is likely to progress, and if the patient wishes, even the way in which they will die.
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To mitigate a possible ‘out-of-control’ feeling, some patients can be given partial or complete control of their medications and treatment regimes.
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To ease emotional discomfort caused by depression, fear, anger and/or anxiety, it is important to determine how the patient is dealing with these emotions. Then determine what assistance may be beneficial.
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To alleviate spiritual discomfort which may arise from a personal questioning of the value of their life, such as, was it worthwhile? Were people helped and lives bettered because they lived? Support from their religious leaders, for those who have accepted a particular faith, may be helpful.
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To overcome issues arising from possible social abandonment in circumstances where family and friends feel uncomfortable coming around. They may not want to interfere, or may not know what is helpful even if they would like to offer assistance. How can their participation, if desired, be encouraged?
As Callanan and Kelley point out, this is the final journey for a person who has been significant in our lives. We owe it to them and to ourselves to provide loving and thoughtful support. This book will help you to do just that.
My sister-in-law Shan looked over at me. Her eyes filled with tears, but her voice held as she told me my brother, Jerry, had been stabilized and heavily medicated, following very intrusive emergency surgery.
Shan had known some of what lay ahead for them when they married; he was already infected with the virus that would take his life just fifteen years later. They had a daughter together and Shan kept up her busy professional career. She hadn’t much choice: Jerry’s illness forced his retirement six years ago.
Jerry was the youngest sibling in our family. His twin, Jack, died ten years ago of a different cancer. Unlike Jerry, Jack died within a month of his diagnosis.
My partner and I drove seventeen hours to get to the Edmonton hospital where Jerry had been transported the week before he died. I got to spend precious time with him in the ICU the night we arrived and for some days following.
Then the Coronavirus pandemic dictated that only his wife and child would be allowed to visit, we returned home to the coast.
It must have been gruelling for Shan to drive for hours early every morning from their hometown to the Edmonton hospital and then back again late at night, often in temperatures of 30 below.
Then there was the financial burden of a hotel and meals in Edmonton on those days when he would experience further emergency medical procedures which left his fate uncertain until the wee hours of the morning.
But Shan was always there, always speaking positively of Jerry and their relationship, though the strain the last few months must have been considerable.
The strain on caregivers is inconceivable to those who have never had to juggle a career, child-rearing and never-ending medical appointments, including specialist’s medical procedures. All of this, along with other familial obligations and social commitments.
It is especially difficult when the career of the caregiver is at its peak. The long sought after position is then at its most demanding, but if the health of a partner or child falters, then fails, decisions must be made that inevitably compromise professional responsibilities.
And if, as in many cases, the parents of the caregiver are also aging, or their child has special needs, the burden can be overwhelming!
In the midst of this pandemic, when many of us are self-isolating, we have the opportunity to reflect upon the role that some among us fulfil with grace and dedication, patiently and lovingly, and the courage and stamina that such a role requires.
We are grateful to Shan for her loving care of our brother.
“Cancer is the big reveal.”
So states singer/songwriter Beth Torbert, more popularly known as Bif Naked, in her article in the September 27th edition of the STARMETRO.
Epiphanies and transformations happen within the cancer patient, she says, allowing for deeper self-knowledge, for discarding or examining pre-conceived notions, and ideas about the self.
Bif observed that women are often uncomfortable with being cared for: They are used to being the caregivers.
It can take time to accept nurturing. And for many cancer patients, unrealized issues of self-esteem can arise.
Bif found her natural reaction to her own cancer was to make others laugh. To use self-deprecating humour to lighten every situation.
Being able to use her special brand of humour to make people break out in “snort laughter” was an important aspect of making others more relaxed with her condition, and with what was happening in the present moment.
She felt at her best when she was helping others. And, she reflects, taking care of others can be a natural response for women.
This ability to invoke laughter in others helped Bif to lose all sense of time: to allay her fears.
It was her way of caring not only for herself, but for her family, her medical teams, and her companion cancer patients.
Now that she is a cancer survivor, Bif says she feels it’s her responsibility to visit, to bring cheer. This amazingly intuitive vocal artist suggests that our Canadian culture makes us reticent, hesitant to intrude.
But Bif says, Be a pest. Always be a pest.
The old-fashioned approach, bake a pie, call, bring flowers, read a book, is what best helps overcome the isolation and alienation that families can feel when cancer strikes close to home.
Laughter, Bif reiterates, is the best medicine!
What is of greatest benefit for a caregiver?
For myself, time to reflect upon how to balance my desires and expectations with the caregiving role I had assumed for another. This was of most benefit to me.
It was after the death of my father that I came to experience the positive change in attitude that this time of reflection can bring.
Mom and I had never been close. We never had what is viewed as the traditional ‘mother-daughter’ relationship. In fact, we’d had strong differences of opinion, and unresolved situations from our past.
But after the death of my father, Mom had nowhere familiar to go. And she was already in the early stages of dementia.
While we lived in a big city and she came from a small rural area, I felt she would be more comfortable living with my husband and I than with strangers in a rest home.
But could this work?
After a great deal of thought I came to the following decision: If I loved Mom, and cared for her well-being enough to want her to come and live with us, then I was clearly able to, if not forget the past, at least to forgive her for her part in it, even if this remained unspoken.
And if I loved her that much, then we would be okay. I would have no expectations of her. I would see what she could manage on her own and with what she needed help, and move forward from there.
That decision set my attitude.
Letting go of the past opened the way for Mom and I to eventually establish a curiously close relationship, one which had eluded us during my youth, and to heal the wounds we both had suffered in our mother-daughter angst.
Years later, as my husband, Chris, grew weaker and his heart disease progressed, I knew I needed help. I availed myself of what the local public health agency had to offer, but it was very limited.
In church one Sunday the priest told us to reflect upon whatever special blessing we required. I knew what I needed:
I needed God’s grace to see me through to the end of my husband’s illness. It is one thing to do what is asked of us by life, but it is another thing entirely to do it with love and joy.
No, I was not always cheerful and loving! I’m also human!
But at times when I caught myself ‘tensing’ into a reactive and unpleasant state I’d remember my prayer for grace, breathe out my tension and relax into a more loving approach; one that benefitted both myself and my husband.
We don’t have much time to ourselves; at least, I didn’t. But once or twice I had the time to think deeply about my position as caregiver.
And I believe it was the result of the thoughts generated, the decisions made and the attitude engendered by these times of contemplation that made my caregiving experiences positive.
It was in these times of reflection that I came to realize it is not the person in my care who determines how I feel about looking after them. That comes from within me.
I learned that I decide what my attitude will be, what presence I will bring into the room.
Caregiver Me 