Sharla Folk Shares Her Journey through Palliative Care and Bereavement

 

 

Susan Dugas' Story

 

Hello, my name is Susan Dugas and this is my daughter Sarah. I have been asked to speak to you today about my all too recent experience with Palliative Care here in Regina. February 23, 2009. It started as a very ordinary day for me, my husband Philip had a headache which we attributed to sinus infection.

 

I began my day making him a doctor’s appointment, presumably to start him on antibiotics, then headed off to work. By the end of the day Phil had been diagnosed with a brain tumor and by the end of the week he had been through brain surgery. Then we had an even more specific diagnosis of giloblastoma multiform, a stage 4 brain cancer, aggressive and terminal. Phil was a big, strong, determined kind of guy who believed in “making things happen”. He was fond of saying,”just get after it”. I have always been, “ever the optimist”, the family cheerleader, carrying with me a half-full glass of life. Together with our three children; Sarah, Rachel and Daniel we were determined to beat the odds, which were grim, and show them (the oncologists) that they were wrong. At end of our first oncologist appointment at the Allen Blair Cancer Clinic doctor Kahn told us, “this is your path; how you travel it is up to you.” We took this to heart and began our journey with love, hope and determination.

 

For the first 18 months life was better than we had been told to expect. Phil did well with radiation and chemotherapy. He maintained his mobility, and although he wasn’t able to work, he could still drive and remained independent. We travelled across Canada, enjoyed our family and friends making the best of our journey. Phil of course had those dreaded MRI’s on a regular basis. We would work hard to keep positive and optimistic as the appointment drew near. There were the inevitable oncologist meetings, where we were told so far so good, but there will be a time when this tumor will grow back, there is no cure. We would leave the appointment, like the weight of the world had been lifted from our shoulders, feeling blessed, until it was time for the next MRI appointment.

 

Unfortunately the oncologists were right and inevitably we were told the tumor had returned. According to our oncologist the tumor was inoperable, but we asked that the MRI be sent to a neurosurgeon for a second opinion anyway, which they did. But in the meantime Phil was referred to Palliative Care. We left this oncologist appointment feeling broken hearted and completely defeated. Palliative care signaled the end, the end of Phil’s life journey, the end of our time with him, the end hope. Add to this the fact that Phil was losing mobility rapidly and it was difficult for him even to move about the house let alone get to down the steps and out to the car. Life had become a challenge for us. And then Palliative Care entered our lives. The first person from Palliative Care that we met was Carol Hepting. Carol is an occupational therapist with Palliative Care.

 

Like everyone that we encountered with Palliative Care, she was kind, thoughtful, compassionate and so very helpful. Within 24 hours Phil had a wheel chair and saskpolls to help him lift himself up out of chairs and into bed. He had fairly easy access to a washroom, but it was a washroom fitted with a soaker tub and no shower. No problem, Carol arranged for us to get an electronic tub chair that that was adaptable to a deep tub. Phil embraced the bubble bath, enjoying the long relaxing soaks, and was spared for the time being from the unease of a sponge bath. Carol even arranged for a handicapped parking pass, something I would never even have thought of, but something that made our life so much easier.

 

Soon after Palliative Care came into our lives, Phil was scheduled for a second surgery. Phil had reservations about the second surgery, but with the second surgery came the promise of more time. As a family, we just weren’t ready to let go of Phil, nor he of us. With the promise of more time renewing our hope, we met with Ross Larden, the Palliative Care Coordinator. When we sat with Ross in our living room to discuss how palliative care could assist us when we needed them, we were scared and anxious.

 

We were at a place in our lives that we had never really imagined that we would be – other people faced death, but not us. We hadn’t a clue of how to deal with any of it. Ross was calm, sympathetic, & understanding. We had no idea of the range of services available to us, everything from nursing care to music therapy to grief counseling. Ross explained how each of the services could benefit us as we needed them. He assured us that Palliative Care would be there for us whenever we called, and they would do whatever they could to make the last leg of Phil’s journey as peaceful and painless as possible. On October 4th 2010, Phil had his second craniotomy and it went, as they say, “As well as could be expected”.

 

We did get some time, not nearly enough though, and still we did have some wonderful moments, some laughs, lots of love, although again not nearly enough. On December16th we were told by the neurosurgeon that Phil was not expected to live until Christmas. Phil was in the hospital at the time, and we wanted to bring him home. I called Ross Larden, who made good on his promise that Palliative Care would be there for us whenever we needed them. With that one phone call we had a hospital bed; we had a wonderful electronic lift to move Philip around with ease and safety. Dr. Johnson met with us at the hospital to sort out the medications that Phil would need, and we brought him home.

 

Once home we were introduce to Linda Bodnerchuck, one the Palliative Care nursing angels who would be with us until the end and then some. Thankfully we were able to spend Christmas with Phil. As matter of fact he improved once he was home and was against all odds, able to eat Christmas dinner at the table with us. We had more time, almost two months more. Unfortunately during those following couple of months Phil began to slip away from us, becoming increasingly less mobile, less able to get to the tub or the toilet, more in need of constant assistance and care.

 

Along the way Carol was there helping us adapt our home to the changes in Philip’s needs. The nursing staff, led by our nurse Linda, dropped by with support, medication, advice, hugs, a shoulder to cry on and encouragement for Phil, me and the kids. They put us in touch with respite care; they had a social worker come out to meet with Phil and talk about legacy planning.

 

The nursing staff taught our family the skills and abilities needed to care for Phil on our own as much as possible. This empowered us. The hands-on care made all of feel like we were contributing something towards making Phil’s life easier. It felt as though we were all a part of Phil’s journey, holding his hand and sharing his last moments. Having Phil home with us made our daily lives so much easier. I could spend every minute that I wanted with him, day or night. The kids could come and go, regardless of their schedules. Friends were more comfortable visiting in the familiarity of our home as opposed to a hospital. I believe that we had two additional months with Phil thanks to the care and comfort that he received being home.

 

Philip died the morning of February 23, 2011. Exactly 2 years to the day from when he had first been diagnosed with brain cancer. We knew it was to be his last day as our nurses had prepared us. We were all with him for the last hours of his life’s journey.

 

He passed away peacefully, without pain or anxiety, in the home that we have lived in for 26 years, surrounded by love and family, his dog Rex lying at the foot of his bed,. We took our time with Philip in the hour after he passed away. We sat around the room with him, remembering his funny laugh, recalling our favorite Phil stories, giving ourselves an opportunity to even in a little way come to terms with all that we had just lost.

 

Then we called our nurse, who came and took care of everything else. And she did it with so much respect and compassion, that in retrospect you have to marvel at the, depth of character these people have, and their willingness to share it with others. One would think that that would have been all there was to it. Palliative Care would come and remove the trappings of health care from our home and we would be left to our grief. But there is the wonderful and necessary support from Greystone Bereavement Centre. Our oldest daughter Sarah had already attended some private anticipatory grief counseling which she had found helpful.

 

Our youngest daughter Rachel was struggling to come to terms with Philip’s death, and needed some expression of grief, but really could not find a voice for any of it. My struggle was with the lack of control that I had over Philip’s death, why could I have not somehow prevented it, anticipated the return of the tumor and speeded up the second surgery – I felt that somehow Phil’s death was in part my fault.

 

In order to deal with these feelings, the three of us attended a 5 week grief support group; Sarah and Rachel were together in a group of those who had lost a parent or close family member, and I was in a group of those who had lost a spouse. Safely surrounded by people who knew exactly what we were going through, we were given an opportunity to share, cry, be angry, learn, grow and heal.

 

At the end of the evening, Sarah, Rachel and I would talk about how we felt and Daniel would be there with us listening. It was good for all of us alone, and good for all of us together. Shirley, the facilitator of my support group still calls me every couple of months to see how I am getting along. Our son Daniel, almost 22 at the time of his father’s death, did not attend grief counseling, although we have been encouraging him to. Hopefully, sometime soon he will be ready to get some support in finding his own peace.

 

People say to me, “You’re so strong”. I have gained strength from the support of this wonderful organization. Thank you so much for helping to make all of their good work possible.

 

 

Good Evening everyone

 

I am so honored to be asked to speak at the Festival of Trees this evening. The recipient of the fundraising from this event is an organization my husband Kim and I hold very close to our hearts. Bern Palliative Care and the Greystone bereavement center gave our family the strength to do something that we never thought possible, and have helped us to carry on.

 

In the past seven years I have lost two sons.

 

Dustin was born in 1980; all my hopes and dreams had come true. All I had dreamed about as a young girl was to be a Mom. I was again blessed with the birth of another son, Christopher in 1983.

 

My life was very full with two boys, who were both very ambitious. Being a working full time Mom and having your children in sports and activities consumed our days. And they were both growing up to be wonderful young men.

 

Our lives were soon to become unraveled. In 2001, we received a phone call to say that Dustin had died in a motor vehicle accident.

 

There I was explaining to Chris that his beloved brother, his best friend and his mentor was gone. We did not know what to do; and what does one do when tragedy like this strikes?

 

As the time went by we came to accept our great loss knowing that someday we would once again be reunited with our Dustin.

 

Chris became the soul focus of my own personal hopes and dreams. After all I had paid the ultimate price of losing a child.

 

However, at the end August 2006, my hopes and dreams were shattered once again, when we learned that Chris was diagnosed with cancer. Chris's first response at hearing the dreadful news was "Oh my God Mom what is going to happen to you?" Concern not himself but for his Mother. That was my Christopher.

 

During this very scary time, I did seek out medical attention to help me to deal emotionally with Chris's illness. I was going through a deep depression and at the same time, trying to keep myself together for my son. I was introduced to Debra Wiszniak who introduced herself as a bereavement counselor for Palliative Care. I soon learned that I was dealing with anticipatory grief and received wonderful support from Debra and talked to her often throughout Chris's treatment and our journey learning to live with cancer. She gave me the courage to do what I had to do. For that I am grateful.

 

By 2007, Chris's condition went from hopeful to the worse. We learned he had 5 lesions on his brain and they were inoperable. Chris was given 3 to 6 months to live.

 

My entire world just fell apart at that moment. All my hopes and dreams for my beautiful son were ripped away from me in a matter of seconds. I was devastated. Chris had become the word I dreaded; he was Palliative. I was going to have to watch my only son die. How was I going to do such a thing?

 

During the next few months, Palliative Care became a godsend to our family. They guided us, they educated us, they coached us and they supported us in allowing us to fulfill Chris's final wishes. I think most of you are all familiar with Chris' wishes - from seeing the ocean, to a Labor Day Rider Game and to the Grey Cup.

 

He was able to achieve these wishes because of palliative care and the wonderful compassionate team who made it happen - Dr. Clein, Nurse Leona Carvell and Debra Wiszniak who became and continue to be so much a part of our family.

 

I remember returning home from Grey Cup on the Premiers plane. Chris was sleeping with his feet on Leona's lap, and I was looking out the window as we are flying over Ontario.

 

Then, the tears started flowing down my face; Leona tapped me on the shoulder; she reached over to hug me and I whispered in her ear "I cannot believe I am taking my son home to die."

 

I so wanted her to say "No, you are not." But I knew and so did she, so she just held me.

 

Thanks to Debra, I was guided in what to expect at the end of Chris's life. She gave me the best advice in my entire life as I was able to allow Chris his final wish...to die at home.

 

In his final moments as he lay in my arms in our home, I was able to say, "I love you and I am so proud of how hard you have fought. I promise you I will be okay. And I also promise you that I will carry on what you started, which is helping all these kids with this terrible disease." I also reminded him "you promised me, when you get to heaven give your brother a great big hug and kiss for me."

 

On December 7, 2007, Chris took his last breath in my arms. He went to join his brother in heaven.

 

Now, both my son's were gone.

 

Loosing Dustin so suddenly, I did not get to touch, hold or see him. With Chris's death I was able to hold him and to be with him every moment of his journey.

 

In a couple of short weeks, I will l have to confront a very difficult day it my journey. On Dec 7, it will be 1 year since I was able to talk to my son, to hold or touch him. It still some days feels like it just happened yesterday. I am still in very early grieving. I can be going along and coping just fine, and a specific date will come looming at me and knock me off guard for a few days. The Holidays hurt so much, as well as Chris's birthday, and Mother's day will never be the same again. At times being around my girlfriends at work as they are talking about their children, or their grandchildren, reminds me this is something that I will never experience. To help me thru these difficult times I have participated in Greystone Group bereavement classes. What I particularly like about these, is because you are separated into groups according to your loss. Being able to converse with parents who have lost a child is so important, because the loss of a child is like no other. We are a club like no other and certainly one no parent wants to be apart of. No one understands your grief unless they have lost a child. I saw a popular show the other night that said it all, "when you lose your parents you are called an orphan, when you lose a spouse you are a widow or widower, but when you lose a child, there is no word to describe who you now are." In a sense you lose part of you identity. I have learned thru these classes as well as one on one counseling with my friend Debra, there is one thing about grief, "you can't go under, you can't go over, you have to go through it."

 

This I learned the hard way, after Chris passed away, I thought in my head that I had done a lot of my grieving before Chris had passed because of his being so sick, so I quickly went back to work, I thought I did not need to talk to anyone anymore, that I was okay! Well after a few months of this, something triggered me back to my loss and I off work for a good three weeks. I tried to deny my sadness and sorrow but it eventually catches up and boy it can take you down. Talking, crying, letting your anger flow, letting myself be sad, as I had every reason to be. Losing my children meant also losing my hopes and dreams of seeing the boys get married and becoming a Grandma were not going to happen for me. I was mad, and that is okay, you have to let yourself feel and not keep it bottled inside. Thank God, we have great people in this world who specialize in bereavement counseling and our own bereavement center; a place to turn to when I just need to talk. When I lost Dustin I did not have this support. I purchased many books about grieving and tried my best to work through it that way. Chris' illness brought back many issues of Dustin's death that I had not resolved. With Debra and the team's help I am able to begin working towards giving closure to that unresolved grief. I am grieving the loss of both of my boys.

 

This support is important because we do not know what to expect and we feel alone in our grief, misunderstood. Everyone else begins to get back to their lives and we are left behind. They do not understand that there is no time line for grief- it just does not suddenly end - it is a journey that lasts a lifetime - the waves only become less intense. However, we can find solace, validation and continued support in such services. We do not have to be alone.

 

A huge part of the healing that has helped Kim and myself to carry on is the forming of the Chris Knox Foundation. Its goal is to help children and young adults up the age of 30 who are either battling cancer, are in remission, or are receiving palliative care to attend sporting, fine arts, and cultural events, giving them a much-deserved reprieve and creating some happy memories with their families and loved ones. It was Chris' wish.

 

So many wonderful people of this fine province helped our family at such a difficult time, giving us some wonderful memories to cherish with Chris. Now we just want to pay it forward and that is what the Chris Knox Foundation is doing.

 

I can't express enough gratitude to the Palliative Care team for giving me the courage to do the most important thing of my life. Helping my child to leave this life feeling loved and with dignity. And now that he is gone, to help Kim and I find a new normal in our shattered lives with your compassionate and caring grief support.

 

Lastly I want to share my time this evening at Festival of Trees with the two special angels who walk beside me each day. Dustin and Chris, I love you with all my heart and miss you each and every day. Being your Mom is the best job I ever had. I will never understand why you had to leave me so soon, but I will try to use the memories of the both of you to live my life to the fullest. As my oldest son Dustin used to say to me "Catch ya later"

 

Thank you everyone and have a wonderful evening.