“Being with my mother when she died was one of the most beautiful experiences of my life.” Dorothy Craig – Nursing Home Volunteer
“…to be there, offering a calm and deeply caring hand was my joy.” Elaine Connah – Long Term Care Nursing Home employee
“It may sound odd, but this type of care makes me happy to be a nurse. I am passionate about helping people to die in the best way possible. ” Jill Labonte – Registered Practical Nurse in Geriatric Care
“I say the only task we have in life is to pick our dying. Thus, I ask the person: What do you want?” Mary Gavan – Registered Nurse – Palliative Care
“The risk of constantly thinking there is a pill that will stop every discomfort and breaking down of the body is that energy is taken away from reality and people lose time and the chance to do what’s most important to them at the end of life.” Louise Clark – Palliative Care Physician
“It is like sand in your fingers – And for the one you love it is like quicksand — They try to hold on and stay — Your sand runs away no matter if you try to stop it” A poem by Susan Martensen about her mother, who has Alzheimer’s Disease.
Five of the six people in this article were asked about their experience working with or being with people who are at the end of their lives. At the end of this article is a poem written by Susan Martensen about her mother, who has Alzheimer’s Disease. Here, in their own words, are their stories:
Dorothy Craig – Volunteer at the Long Term Care Nursing Home where her mother died. Dorothy lives in Ottawa Ontario.
Dorothy works as a volunteer at the nursing home where her mother died. She finds it comforting being there, but that isn’t the reason she comes in almost every day. What she really wants is to help every resident have the best end of life experience they can have – just like her mother had.
“My mother was completely at peace when she died. Seeing that made all the difference. Being with my mother when she died was one of the most beautiful experiences of my life.” Dorothy Craig took a few moments to refocus on the present and continued. “She always told me that she would live to be 100, but one day when she was 96 someone asked her age. Without hesitation she said: ‘I’m a hundred!’ That was her way of telling me she was going to die soon. She died a couple of months later and I was with her as much as possible during that time. ”
Elaine Connah works at a Long Term Care Nursing Home. She currently works in Activities, but prior to that she did bedside care. Elaine lives and works in the Ottawa, Ontario area.
Elaine began working in long-term care in her early twenties. This was back in the 1970’s, when long-term-care was not subject to the same regulations in place today. She was hired off the street as a nurses aide. “I fell in love with the job. It was quite an eye-opener, this caring for the elderly, but truly rewarding. It certainly gave me a deeper love and appreciation for my own grandparents and the life they had lived.”
Elaine took time off to start a family, but it wasn’t long before “… the call of working in long-term care beckoned once again.” She began work on November 19, 1980 – she still remembers the date – because that was when she “…began my lifelong love affair with Extendicare Starwood Nursing Home, caring and advocating for the thousands of residents who’ve passed through our doors.”
“My first eight years were spent in the nursing department, once again working as a nurses aide. No such thing as a Health Care Assistant (HCA) or Personal Support Worker (PSW) in those days! No ‘primary caregiver’, just me and one other gal tending to the needs of almost fifty senior residents. We were blessed to have a Registered Nursing Assistant (RNA) who pitched in whenever she wasn’t doling out her meds or applying treatments. It was all hands on deck during mealtime, delivering trays, pouring tea & coffee, helping feed those in need … and maintaining a significant amount of good humour! The pay was lousy and it was a back-breaking job, but with the help of good and caring co-workers, we managed to get it all done and laughed to work another day.
The one area that seemed to call out to me was caring for the dying resident. I lived eight hours a day, five days a week, and about fifty weeks of the year with these residents so it only seemed fitting to be with them during their final days, hours or moments. I call them ‘residents’, as that is the term used, but these men and women are our extended families. They become our friends, aunties, uncles, or surrogate grannies and pappies. I laugh and cry with them during their ups and downs. I hear their inner most fears and see them at their most vulnerable. I hear their stories and shared their memories. What an honour – what a privilege. Why wouldn’t I want to be there during their time of most need?”
Elaine Connah Copyright © JD Cottier
“Many no longer have families or friends to sit by their bedside. Some never did. I don’t do direct bedside care anymore, but to be there, offering a calm and deeply caring hand was my joy. I was there to reassure them that all was well; there would be no more worries, no more pain, no more suffering. I would say: “It is okay to simply close your eyes. All is well”. Sometimes, depending on the person, I would recite The Lord’s Prayer, sing a hymn or read a poem. I often had soft music gently playing in the background … everything was so peaceful; so quiet.”
Over these past many years I have been blessed in attending several resident wakes and funerals. The Activities Department (1988) has afforded me the opportunity, to not only say my final goodbyes, but to meet with the families and share some wonderful memories and stories. Starwood also provides a quarterly Memorial Service, where we offer a short service, to share staff and volunteer stories & memories of residents who have recently passed away. Families are invited to attend, which, in many cases, is their first time returning to Starwood. Not only does it often provide a sense of closure for the families, it allows them to hear caring, and often times humourous, stories about their loved one. It is an opportunity to know that the staff truly did care and share in their grief. Offering palliative care is not comfortable for everyone. For me, it has been a gift of opportunity that I will forever be grateful.”
Jill Labonte is a Registered Practical Nurse specializing in geriatrics. Jill lives in Ottawa, Ontario.
“I have been a nurse for just shy of 36 years. I chose nursing, however I believe nursing with seniors chose me. My first rotation as a nursing student was on a geriatric floor at the Civic Hospital and I will admit that at first it terrified me. My own grandparents were healthy and well and I was taken aback by seniors who were not. It was at that point that I actually considered leaving the nursing program all together. Fortunately, because of an amazing nursing instructor and supportive parents I made it through. My first job was a short stint at the old General Hospital in the hemodialysis department. But after six months I knew what I really wanted to do with my life. Despite my early experience I had fallen in love with seniors and all they had to offer. My last rotation was at the old Perley Hospital. I had the same nursing instructor and she asked me where I would be applying for work. My response was “anywhere that gives me the opportunity to work with the elderly”.
Pimjai “Pim” MacDonald does a resident’s nails. Pimjai works at Extendicare Starwood in the Activities Department.
Photo Copyright © JD Cottier
I have now spent the majority of my career working in Long Term Care homes and Retirement residences. I have people say it is not REAL nursing. It is most definitely real, rewarding and very important nursing. The people I care for have lived long productive lives and it is my privilege to help them live the last years of their lives to the fullest, in whatever way it plays out. People have asked me if I find this type of nursing depressing. I find it to be quite the opposite in fact. My heart becomes full when I receive hugs and smiles each day at work. My own Mother is in a nursing home and I treat each of the residents I care for in the way I hope she is being cared for, and so it is very important to me.
Part if my ongoing education has been in Palliative Care. It may sound odd, but this type of care makes me happy to be a nurse. I am passionate about helping people to die in the best way possible. Death is part of the circle of life. Not always, but often I feel I am able to provide end of life care that can be as a beautiful as watching the birth of a baby. This means attempting to make it as pain free as possible and to surround the person with the love of family, friends and staff who care. By doing this, all involved are able to feel comfort about what is happening. Of course it is sad when that last breath is taken, and I have shed many tears over the course of my career, but I feel privileged to have been a part of this inevitable process.
One of my favorite books is ‘Tuesdays with Morrie’. It is an incredible book, and I learn something from it every time I read it. It is full of incredible quotes about life, love and dying. One of my favorite quotes is:
“As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. All the memories are still there. You live on—in the hearts of everyone you have touched and nurtured while you were here” ― Morrie Schwartz
I love what I do, and hope that I have made a difference over the years. My life has been enriched in so many ways because of my chosen path in life.
Mary Gavan is a palliative care nurse who cares for dying patients in the last few days or weeks of their lives. She either goes to the person’s home or visits them at the hospital or hospice. Mary lives and works in the Lower Mainland (Vancouver area) in British Columbia
In a lifetime of working with the dying, I have not seen two people die the same way. Every dying is unique. As a result, I say the only task we have in life is to pick our dying. Thus, I ask the person: What do you want?
Although the question is easy to ask, the answer is hard to hear. Working with people, I find the fundamental issue is: can I hear you?
Yes, I find effort is required to hear not only the content but also the meaning. Hence, hearing and holding the meaning requires constant checking in with the person. Ditto for family and friends. Thus, I must listen at a level of deep attention.
Such a depth of attention takes a lot of continuous training to achieve and to sustain this skill. Without this skill actively practised, listening is superficial and misunderstandings arise despite the best intentions of all. Indeed, working with the dying has allowed me to see the best in everyone. Nonetheless, contretemps arise.
Hearing deeply and facilitating resolution of these misunderstandings is challenging. I aimed for consensus. Rather than view consensus as one course agreed by all, I regard consensus as what everyone can live with. Thus, diverse actions are possible.
For example, during the time of dying and death, some want near silence, others the everyday noises, others music in all its variations and so on. For one family, consensus involved having different areas designated to each option. Thus, boundaries were established and honoured.
Boundaries is the most significant word at this time. With their desire to help and to do their best, many over reach their boundaries. This can result in physical tiredness, emotional upheaval and interpersonal conflict.
Talking and being heard deeply resolves these issues. A bit of Catch 22 because if people did listen deeply to themselves and others, the misunderstandings would be dealt with promptly. But we are people with foibles and needs.
Identifying our needs sounds so simple but requires deep listening. That depth of listening is the task of each individual. By reflecting back, however, what we hear deeply, we can assist others to hear deeply of themselves.
For me, the charm of working with the dying and their network is that I am nudged into being a person who listens deeply and reflects compassionately as well as one who identifies and honours my needs.
As a result, I can fore-go striving to achieve objectively and can settle subjectively into being the ordinary person I am. For that time, I know who I am as myself rather than the roles I necessarily adopt in my personal and professional life. Being ordinary amidst other people also knowing their boundaries is bliss – hence the addiction to this work.
The rest is tricks of the trade, an accumulation of practical skills and best practices to share with others so that all can have the level of comfort and safety they need.
My training was 5 1/2 years at Edinburgh University and included hospice work. Annually, my tutor posed questions about the quality of life and what we could live with or without. For example, my legs are less important than my hands than my eyes.
These enquiries on quality of life, difficult at an age when one perceives invincibility for the peer group, challenged me to clarify my personal beliefs and have remained part of my annual nursing reflection.
Thus, I remain clear that care for me is alternative medicine only. When my quality of life is threatened irrevocably, I am out of here.
Louise Clark is a Palliative Care Physician and works in Portland Oregon
Ok- death. I think I have the perspective my father, a farmer from Northern Michigan, gave me when he said that when his time comes, just roll his body out to the manure pile behind the barn. In other words, death happens. We can’t stop it. What’s all the fuss about?
My job is to help people understand their options. As the medical industry has sold all of us a bill of goods that says there is a fix for everything, we have to be reminded there is nothing that comes without a risk. The risk of constantly thinking there is a pill that will stop every discomfort and breaking down of the body is that energy is taken away from reality and people lose time and the chance to do what’s most important to them at the end of life.
A big part of my job is reminding people that the body still does what the body does no matter how much we don’t want that to happen and no matter how much we fight it. In a nice way, of course…… But I DO believe bringing reality in to the picture IS being nice even when people have been trying so hard to paint reality away. And it’s my job. Along with helping people with the symptoms they have that can add to misery and sap strength and joy at end of life.
We most often die how we live. There are rarely miracles at the end of life that resolve all prior issues and conflicts. The biggest gift I get from my work is being reminded a lot that if I want to be remembered in a certain way, I need to live my life that way now.
The other big gift I get is seeing people in their own environment. It’s very different from in the office and seeing people with family (or caregivers if in a facility) paints a much fuller picture of the person than in an office. And I see almost every time that no matter how difficult the patient is and how bad the relationships are, if family is around, they try their best. Just as it’s likely the dying person tried their best. It doesn’t mean all is forgiven or magic healing occurs but it does mean I get to believe people in general do the best they can to make things as good as they can for someone who is dying. That’s probably enough. And probably all that can be done.
I’m also in a position to think a lot about what I would and wouldn’t want at end of life. Granted, I have my Dad’s perspective to start with, but my work makes it even more clear to me that if I can’t feed myself and I can’t tell someone I’m hungry— nobody better put a drop of food or drink in my mouth! My kids have know that since they were teens. I require them to recite the mantra back at me on a regular basis. The biggest threat they make to me when they are annoyed is that they WON’T pull the plug. And I will tell them over and over and over so they have no guilt and no doubt whenever the time comes. And they know if I can’t care for myself they are to put me in a home of some type (with the same rules about putting food and drink in my mouth) so they aren’t physically caring for me. As much as I’d hate it, I’d hate them feeling they need to provide that care for me more.
And I know all of my decisions in the abstract may not be what I say in the concrete. But they are pretty strong foundational parts of who I am strengthened by the care of the dying that I’ve done for the last 15 years.
We live. We die. The only miracle is that we keep trying to do the best we can.
Now You See Her, Now You Don’t
Copyright © Susan Martensen October 2010
Daughter of Jean Bockman – Starwood Resident
When you love someone
And they are taken and slowly hidden from you
Yet they are fully visible
It is erasing their memory and slowly erasing yours
It is like sand in your fingers
And for the one you love it is like quicksand
They try to hold on and stay
Your sand runs away no matter if you try to stop it
Your love remains strong
Although what is familiar becomes strange
You learn to blindly love
Staying faithful to your heart as sundown falls
Fear presents as your friend
Trying to pull you away from your loved one
Saying “Take the easy way out”
Protect yourself from the sadness and the effort
But you remember the love
The love that was unconditional as you grew
The tenderness and strength
To guide you at a moment’s notice – always
Peace and calm are conveyed
To hold the space and nurture the essence
Of the love that shines through
Maybe a glimpse, but never give up hope
Oh, harbinger of this cruel fate
I will never accept this senseless disease
I will hold my loved one close
As long as she breathes life I will breathe love
We all hold on together
And bring our presence to who we know her to be
As she is ravaged and hidden
We will face the demon and stand true to her
As long as we can breathe
We will love her and stand with our father
Our family is our life’s blood
Our strength and our reason for living our lives
Alzheimer’s – who are you?
There will be a way to run you out of town
It will be found some day
And you will also disappear forever
We love you Mum
We all know who you are in your love
For us and all in your life
There is love and light within you….. always!
Article and photographs , unless otherwise indicated, Copyright © JD Cottier
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