The Importance of Bereavement Care

 

 

A Consumer's Perspective

by Susan Dugas

 

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 of 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 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 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.

 

 

A Consumer's Perspective

by Andrea Wagner

 

Thank you for the opportunity to speak with you tonight and to share a bit of my and my family’s experience over the last few years and how we have benefited from Bern Palliative Care Inc.

 

Our story is not dramatic. It is not about a family who loses a young and precious child or of a young man who dies with a life of promise and possibility ahead of him. It is not the heartbreaking story of a young mother who dies and leaves small children who will never know her.

 

Ours is the story of a close family who loses their wife, mother and grandmother about 20 years too soon. From our perspective, it is a desperately sad story and I am coming to learn that it is very common. Although I hope not, it could be your story, if not yet, then someday.

 

My mom, Geri Wagner, was born and raised in Melville and moved to Regina as a young woman. One day while waiting for the bus, a car pulled over to offer her a ride. It was my dad. They had dated as teenagers, met up again in Regina and married. They built a business and a life together, complete with four daughters and six grandchildren.

 

My mom worked at the Assinibioa Art Gallery and was a volunteer at the MacKenzie Art Gallery. She cultivated real expertise in the visual arts. She also loved music, theater, the Riders, to travel and to grow flowers. The Qu’Appelle Valley was her spiritual home. She was a faithful member her church and a very active community volunteer. My mom battled breast cancer in the early 1990s, and she won.

 

Then August 2007, she was diagnosed with cancer again. It was very aggressive and had metastasized to her lungs before it was caught. She died May 4, 2008 at a very young 68 years old. She still had an awful lot of life left in her – places to go, people to see, things to do -- and we all really wanted to keep her around. But, it was not meant to be.

 

Even though it is excruciatingly sad for us, the story of her death held many blessings, one of the biggest of which is that my mom spent her final days in the Palliative Care Unit of the Pasqua Hospital.

 

Her decline came on rather quickly and her first day and night in hospital was spent in the ER. The staff was kind, but efficient. The chairs were hard for us to spend the night in, the light was harsh and it was noisy and confusing. On her second day she was blessedly moved to the Palliative Care Unit. As she was wheeled down the hall, my dad held her hand and said, “see, I always take you to the best hotels.” No regular ward for her!

 

Palliative care gave us the space to say good-bye. The staff helped us create a peaceful, comfortable, serene, very non-clinical environment. We could dim the lights, we could play gentle music, and we could all sleep there in comfort, which we did -- 2 daughters in her room and 2 in the sunroom. My dad had a small room down the hall and in the night you could hear the “sh sh sh” of his slippers as he would shuffle down the hall to check on her.

 

The staff were wise and supportive. They gave us a basket of reading materials that had a poem in it that really helped us along. The poem likened a person’s body to their coat. Someone can change their coat, but you continue to recognize them in their new coat, or with no coat at all. As it came time to leave my mom, after she had died, one of my sister’s reminded us that it was just her coat we were leaving and that that was okay. She didn’t need it anymore.

 

Palliative care provided a place for our extended family to gather and be together and with mom. My nieces could disappear to play the piano for a while. My aunts and uncles could be with my mom, and then each other the spaces that are set-aside for that. We could find a quiet room to phone my mom’s friends so that could come up and say their good byes. And in that environment of grace we could all tell her how much we loved her and she us, one last time.

 

Because of that physical space, and the superlative staff that allowed us to attend to what was really happening, my mom’s passing was a gentle and peaceful experience for her and for us, which gave us strength to get through the following days.

 

Ah, and if we could have stayed in that bubble of peace and love. But after the funeral, things and people moved on, and it seemed that they expected us to move on, which we just could not. All we could do was huddle together to try to make sense of what had happened.

 

In that first year, my sisters and I often talked about the need for those outward signs of grief, like in the ‘old days’ when people wore black for a year. We were going through a very difficult time and we thought it would be easier if other people knew that. We needed time and space for our hearts to scab over and to start to figure out what the world now looked like.

 

In September of that year, my sisters, my dad and I took the grief classes at the Greystone Bereavement Centre. Again, Bern Palliative Care provided space for us to be present to what we were going through, this time grief. And we could be with other people who were going through the same thing. We could talk about our experience without feeling like we were bringing people down, we could cry, we could share what we were thinking and feeling with people who understood. We were with fellow travelers and it felt good to be together.

 

I was surprised by how many people I knew in the class and it reinforced that death and grief happen to everyone. And yet, we, as a society seem to want to pretend that it is not happening at all, or that it is brief, or easy, or something that someone does on their own after they have gotten home from work or put the kids to bed. While grief is deeply personal, it is also universal. And it is life changing. I think we need to acknowledge that and bring it into the light – to create a space for loss and grief in our lives and world. I guess that is what the Bereavement center is starting to do.

 

As I said, grief is deeply personal. Everyone grieves differently. In those classes, grief for some people seemed to look like anger. Some were feeling desperate fatigue. One woman did not say a word, she just cried and cried, and I wondered if those classes provided the only space where she could do that. As for me, I was stunned, how was this happening to us? And all of our different ways of being were okay. We all had something to learn and something teach. There was an exercise we did as part of the bereavement classes, write a letter to your person who has died. It is something that I have continued to do whenever I feel stuck. I write my mom and tell her about it. My first letter to her really helped to crystallized what I and we as a family were going through. We were broken. It is that simple. We were whole with her, and without her, we are broken. It was so helpful for me to be able to name that. So, for us, the process of grief is coming to terms with that brokenness and then starting to knit things back together. The tear in the fabric of our lives will be there forever, but we can stitch it together so that it is a piece again – a mended piece that is maybe even a bit stronger because of the extra stitching.

 

And so we have begun the stitching. We look at the traditions and rituals of our old life and we decide which we will carry on as they were and which we will change. We are getting clear on what is important to us and we are trying to focus on that.

 

Another of the exercises at the bereavement workshop was to bring something of your loved one to help you talk about them. One couple, who had lost their teenage son, brought his dog. After the class, people continued to stream through that room to meet the dog, and listen to music that another family had brought. Again, a lovely space was created where we could share our loss and also share about our loved one who had passed; we could share their spirit with each other.

 

And so, I have brought something of my mom’s to share with you, her bible. My mom had a very strong and very quiet faith. We take great comfort in knowing that she is resting in Gods loving arms, and yet still somehow magically active in our lives and guiding us as we stitch back together our family and ourselves, with her still in the midst of it, only wearing a different coat.

 

The workshops at the Bereavement Center followed a theme of the seasons: autumn, winter, spring, summer. At the time, I thought at was absurd, that it would never be summer again. But just the other day, a year and a half after my mother died, I started to wonder if I might be moving into spring. Buds of a new future might be starting to grow for me

 

I fear that losing someone we love is inevitable. It will happen to all of us, and it hurts. But if we can be present to our grief, and work through it, we will survive and maybe even grow.

 

 

A Consumer's Perspective

by Lisa Gibson

 

"Just 18 month's ago my life suddenly changed. On October 13, 2006 my husband Brent and I celebrated our daughter Emma's first birthday. Roughly two weeks later Brent died unexpectedly.

 

Never in a million years would I have believed how drastically life, MY life could change. I never could have imagined I would be a widow at age 38 and suddenly a single parent. I must confess how terribly difficult my bereavement has been for me, and guess what? I HAD unbelievable support. I had two great families and siblings and a host of caring friends. I had support and help from my church and a husband whose wisdom and forethought has left Emma and I financially secure. Yet still my pain was overwhelmingly difficult with almost insurmountable challenges.

 

I was in shock, extremely sad and desperately needed help, but I honestly had no idea where to even begin looking for help. As it turned out, I was extremely lucky as my parent's neighbour just happened to be involved with a committee that is raising funds for a bereavement centre. I was connected with Velda Clark, Director of Palliative Care Services who kindly fit me in for an appointment and I was on my way to receiving specialized care.

 

Velda lent me some very meaningful and appropriate bereavement books and connected me with the Adult Bereavement groups where you meet with and speak to others who shared my same loss. She also suggested that I find one thing a month that I could look forward to for the upcoming year.

 

My first reaction was that this idea was ridiculous! How could I possibly be able to come up with twelve months of things that I could look forward to when in all honesty I truly didn't think I would be able to come up with even one! But, I persevered and did somehow manage to make myself come up with a whole year's worth of things to look forward to.

 

Looking back now I realized that this "ridiculous" idea ended up being extremely therapeutic and powerful for me.

 

This assignment not only helped me realize that I "could" find things to look forward to. It gave me a tiny sense of control and organization in a world that for me was unfortunately very disorganized and extremely out of control.

 

Two things kept me focused and gave me the will to press on.

 

The first was my love and responsibility for our beautiful daughter and the second was the anguish I felt when I thought of other young mothers, parents and children in the same situation as me who didn't have the same access that was so generously provided for me.

 

I must admit I still feel somewhat frozen having passed the 1st anniversary of Brent dying, yet I have learnt that 2008 will be the start of some new firsts, I will now have to find a "new normal" for myself and our daughter Emma.

 

Although I still continue to work through my grief, I realize that I did somehow survive the awful ever challenging first year. I will be forever grateful for my counselling through Palliative Care as I do not know where I would be, or how I would be doing were it not for this care. I also do not know if I would be as far along in my healing if it weren't for the Adult Bereavement support group that I still benefit from greatly today.

 

As a person living with Multiple Sclerosis, I was fortunate to have experienced and valued the benefit of counselling both from being a recipient as well as an active counsellor and advocate of the counselling process.

 

If I were to compare my personal experience of an M.S. diagnosis nearly 18 years ago to losing Brent last year, one of the biggest differences between the two would be how I was able to find appropriate, time sensitive and meaningful information and assistance.

 

With my M.S. this was absolutely easy and quick. I simply looked up the M.S. Society in the phone book and was quickly connected with help, information and counselling.

 

When I lost Brent a year and a half ago I looked in the phone book for some sort of bereavement society or centre but such a thing did not exist. There was not one number to call where those of us going through a terrible loss could get the help we need.

 

No one wants to talk about death, but it unfortunately happens every day and impacts your life and changes it forever.

 

I certainly do not wish what happened to me to happen to you or any of your loved ones, but, if it did, wouldn't you feel better knowing that there was somewhere you could call that would provide the help you needed?

 

Having made it through this first year, I recognize that it needs to be a lot easier for the bereaved to get the help they so desperately need.

 

My wish would be for the Health Care System and the communities in Saskatchewan to support the bereavement centre so it will be recognized as the central place for the bereaved to call to receive clinically competent and skilled assistance.

 

I also hope that the bereavement centre project raises awareness of the fact that people like me hurt and have extreme pain, yet the very unfortunate part about grieving is the part that society can't see, the part society can't understand.

 

People like me greatly need accessible, appropriate AND timely care.

 

I will forever remember Velda's thoughts from one of our appointments when she was explaining to me that the extreme pain I felt was very much like an open wound.

 

To quote Velda: "if you arrived at emergency with an arrow sticking out of your chest and bleeding all over, emergency would respond and health care is immediately and expertly provided. BUT, if you arrived with a broken heart and no one could "see" it, you are left with no medical attention and left to suffer in silence often with bad outcomes and additional medical expenses."

 

I would like to close by saying that I believe bereavement assistance, not unlike M.S. support facilities is, in reality, a preventative maintenance system."