We have created this section of the website for you to share your stories about caregivers, volunteers, nurses and doctors involved in palliative care. We invite you to share and to come back and read stories from others who have had an experience with palliative care. To submit your story click here.
The OutCare Foundation is grateful to the Robert Pope Foundation for the use of the image entitled Sparrow on this section of our website. The late Robert Pope was a Nova Scotia artist who is best known for a significant body of work exploring his experience of healthcare and healing as a cancer patient.
Submitted Stories
In 2004 my 42 year old brother Bill was eating dinner and when he bit into a piece of meat his tooth broke and started to bleed. When he couldn’t get the bleeding to stop he went to the emergency room. A few days later he was diagnosed with two different types of Leukemia. AML and CML.
At the time he lived in Yellowknife NWT. He was divorced and had shared custody of his then 10 year son Michael. He was flown by air ambulance to the Cross Cancer Hospital in Edmonton. Since most of the treatment he needed was not available in Yellowknife he spent most of the next 2 ½ years in and out the hospital there. When he wasn’t in the hospital he had to stay in Edmonton because he was being treated as an “outpatient”. We have no family in Yellowknife or Edmonton, all of our immediate family is in Ontario. Our mom did fly out to stay with him for months at a time and various family members including myself visited when we could. But it was a terribly lonely and scary time for him.
The leukemia did go into remission in 2006 and Bill’s doctors talked about doing a bone marrow transplant. This procedure can be very risky and requires a good support system for the patient. They had found a donor that would be suitable from the “bone marrow registry” (myself and my siblings were tested but none of us were candidates.)
He would be going to the Cancer hospital in Calgary to be assessed in June. At this time Bill contacted me and asked me if I would consider being his caregiver during his transplant. It would mean that I would probably have to be with him for approximately 6 months. It was a very big decision because I would be leaving my job and more importantly my family! Before I even had a chance to decide the Leukemia was back in his spinal fluid. He was again back in Edmonton having some aggressive chemo treatment in his spine. During this treatment he became paralysed from the waist down.
His doctors decide they would still send him to Calgary to be assessed for the transplant and I decided at that time that I would go and be there with him. My husband told me before I left. “Patti, you need to find out if we can somehow get Bill back to Ontario for the bone marrow transplant”. I agreed because everyone who loved him was here. It would be so much better for him and for us if we could somehow get him here.
When I walked into his hospital room for the first time and I saw my brother swollen up like a cartoon character from the steroids and all the other various medications that are used to try and stop this hideous disease. I realized and I made a promise to Bill that he would not be alone anymore, and that I would be beside him the rest of the way!
The doctors in Calgary decided that with Bill’s paralysis (which they felt would be permanent) that he would not be a candidate for the transplant. They decided that he needed to be rehabilitated first so they sent him to the Glenrose Rehabilitation Hospital in Edmonton for 4 months so he could learn to live as a paraplegic. They would revisit the transplant again at that time. During his time there the cancer went back into remission and I was pursuing trying to get Bill to Ontario somehow in case he did end up having it. The problem was if he came here who would pay for it, because he was a resident of NWT of course OHIP would not cover his treatment. I also needed to find a doctor to take his case here. After talking endlessly to various social workers and agencies here in Ottawa, in Alberta and in NWT and Bill doing the same thing, I happened to speak to someone I had never met before and she was a nurse (and on the cancer ward at The Ottawa General Hospital). When I found that out I told her my situation and she said she would speak to one of the oncologists there. With her help and the help of a social worker in Yellowknife, before we knew it Bill was to be sent to Ottawa General Hospital to be assessed for a bone marrow transplant and NWT health would be taking care of the medical expenses. I was terrified of the logistics of getting Bill flown across the country in his current state, but somehow we managed and he arrived in Ottawa safe and sound and went directly to the 5th floor cancer ward at the Ottawa General where he spent the next four months.
Unfortunately as soon as the doctors started their testing they discovered that his Leukemia was back out of remission. There were cancers cells in his spinal fluid again. After 4 months of more radiation and chemotherapy, testing and researching, endless different doctors and nurses during which time they decided his body could not survive the bone marrow transplant. We were called into a meeting with his oncologist at the time to tell us that Bill would be leaving the hospital. He would still be coming in as an outpatient for chemo but there was nothing else they could do for him.
Leaving the hospital was something we were hoping for and something we had been planning since his arrival in Ottawa, but it was not going to be that easy because Bill was now completely paralysed from the waist down. He was in a big electric wheelchair and used a lift system to get him in and out. It wasn’t easy but we were able to find through a friend a senior citizens residence who also had assisted living that agreed to take Bill. Now my 46 year old brother was living with the elderly. It was a very nice place, but not at all where you want to find yourself at the age of 46. The staff and even some of the residents did their very best to help Bill. My husband, kids and I took turns and one of us was there pretty much every day of the 5 months that he was there but it was not an easy time.
When someone is diagnosed with a terminal disease it goes without saying that it is devastating and terrifying for that person! When you are, or end up being the primary caregiver for that person it is also terrifying and exhausting. You are now responsible for not only your own life but you are now also responsible for so much more. Trying to listen attentively to doctors so that you understand exactly what is going on when your own body is ready to shut down from exhaustion. Reading and researching everything you can get your hands on to try and be informed on what is happening to your loved one. Endless hours and days and sometimes overnights at the hospital. Trying to always be upbeat and supportive and to hide your own fears. When I look back at that time and people would tell me that I was doing a “great” thing. I realize that they don’t know about all the times I sat in my car in the parking garage or driving to the senior’s home where Bill was living crying because I did NOT want to go. I wanted to go home and be with my family. Sometimes you feel resentment to the person who is sick and you selfishly wonder “why am I the one who has to do all this”. I think sometimes we are not always willing to reach out for help when it is right there. All you have to do is ask.
Bill lived at the senior’s residence for about 5 months. After about 3 months his condition really started to worsen. Although I don’t think I really realized it at that time he was coming to the end of his life. The cancer cells were in his brain and he was starting to lose his memory and speech. He was bed ridden most of the time. I got a call late one night from a nurse at the home to tell us they had just sent Bill to the hospital via ambulance. This was not unusual; we spent many long nights standing beside the stretcher in the hall in emergency waiting for his turn to be seen by a doctor only for them to send him back to the home. This time though the nurse where he lived had come into the room to check on him and found him lying face down on the floor. How he had managed to fall out of the bed I don’t know, and I wondered how long had he been laying there before she found him. Again we waited for hours in the emergency hallway until he was brought into the room where eventually the doctor said there was nothing they could do and we could arrange an ambulance to bring him home. The only thing different about this night was that I noticed my husband Scott. He looked completely beaten himself. For the last year, since I took that first trip out to Calgary he had been my rock. He never, ever faltered. All the times I had started to fall he picked me up and he did the same for my brother Bill. We arrived home from the hospital early the next morning. Scott slept for a couple of hours and then went back to sit beside Bill’s bed, I stayed home. When Scott arrived back home I told him I wanted to bring Bill to our house. I explained all my reasons. I was scared to death every time I left him that he might die and we wouldn’t be there. I wanted him to be surrounded by our love. We were so completely exhausted and I thought it would be so much easier for us to have him here and we wouldn’t be going back and forth every day. I thought that NWT health would help us pay for home care. It would be cheaper for them to pay for a nurse to come into our house than what they were already paying for. Scott agreed with me and the next day I went to Bill’s room to tell him my plan. Bill could barely communicate by that time but when I told him he started to cry and said two words to me “I’m scared” and then I told him “I’m scared too Bill”, and I tried to make him feel better by saying it was going to be okay because Scott, my mom, Shaun and Ashley (my two kids) and I would always be with him.”
The next week I somehow managed to arrange it all with the help of AT Home Hospice. It’s a great agency in Ottawa who helped me figure out exactly what Bill would need. They arranged for the personal support workers to come to our house in the morning and then again at night. The palliative care doctor who came right to our house... I could never find the words to describe these “angels”. I of course knew that Bill didn’t have much time left and they were so wonderful to all of us. Most importantly they treated Bill with dignity and respect. They showed us all how to help care for him. What we needed to do when they weren’t there. They described to me what can happen to someone in their final hours, they taught me how to administer a shot and when I might need to use it. On the last day that Bill was with us the ladies came in the morning and did their usual routine with Bill. After they left my husband and my mom who was also here went upstairs to get dressed. I stayed with Bill in the living room where we had his bed set up. He had a seizure which they had told me could happen. It was terrifying and I was screaming for my husband Scott and my mom but they didn’t hear me. I was able to calm myself and remember what they told me to do. So I gave him an injection and then he was perfectly calm again. I immediately called the palliative care doctor and she was at my house within 20 minutes. She told us that Bill was going to be leaving us and she called a nurse to come and stay with us. Bill passed away peacefully that morning with my older brother, my mom, Scott and I at his side.
He had been at our house for only a week. I am so glad we made the decision to bring him there. My only regret is that I didn’t make that decision sooner. I am so grateful to the palliative doctor and the support workers. They truly were angels, so kind and caring and they made our final days with him so much less stressful and exhausting.
When I decided that I wanted to bring Bill to our house I received a call from a good friend. I guess she had heard from our grapevine of ever supportive wonderful friends about what we were about to do. She said to me “Patti, are sure you want to do this? Bill is going to die in your house and you are always going to know that. It may be hard for you”. I told her then, and I feel exactly the same way 4 years later. “I will feel much better knowing that Bill passed away in our home with us, even if we are not in the same room with him when it happens. I will know that he knows that he was not alone”. To this day when I need quiet time for myself. When I just need to get away from everyone. I love going to sit in that room. I feel at peace there. I feel Bill there!
In 2004 my 42 year old brother Bill was eating dinner and when he bit into a piece of meat his tooth broke and started to bleed. When he couldn’t get the bleeding to stop he went to the emergency room. A few... more
Hospice Services
My mother was a healthy and active 77 year old woman. She didn’t take medication, didn’t have any mobility issues, and seemed, to my family at least, to have boundless energy. On a trip to some of her old stomping grounds in Montreal, she noticed that she was short of breath. Over the summer it seemed to get worse. When she finally got an X-ray, she was diagnosed with terminal lung cancer. Her response was to accept the diagnosis and focus on enjoying what life she had left.
The next intense eleven months went by too fast. My parents were coming to the end of their fifty-five year marriage, I was losing a mother, and my mother was losing her life. Not only is this emotionally charged, but then the practicality of dying comes into play. Juggling multiple doctors’ appointments, coordinating schedules for personal and medical home care services, and going for medical tests strips away the patient’s sense of control and focuses the attention on the constraints, rather than on the activities, people and events that bring joy to life. It also places a burden on the family as they try to understand the medical terminology and options, and juggle work and family. The role I played as a daughter changed quickly to a multi-dimensional role of patient advocate, cook, and logistical coordinator, confidante for my father, and advisor, companion and personal care worker to my mother. Add in the emotional impact of personality changes in my mother that occurred as the disease & medications progressed; my dad’s inability to cope; and my personal responsibilities to my own family and work, and things quickly became overwhelming. It came to a head when the palliative care doctor showed me how to inject my mother in the event there was a crisis. I wasn’t trained for that!
When the day came for my mom to be transferred to the hospice it was a relief. The hospice building and the employees were incredibly welcoming. A great deal of thought and consideration had been put into creating a comforting physical space not only in the patient rooms, but also in the common areas. The interior of the building didn’t look or smell at all like a hospital, something that can be important to people who grew up in the era of ether. My mom’s room had comfortable chairs, the medical bed was covered with a quilt, and we could hang pictures on the walls and bring in mom’s personal things. The management philosophy was welcoming, relaxing and encompassing. Family could come and go at any time of the day and night, but we could request visitor access to be limited when mom’s energy was waning. While they had the necessary medical equipment to provide comfort, the focus shifted away from the medical monitoring activities to more interpersonal activities. Patients set their own eating & personal care schedules, and gatherings of family and friends were encouraged. Volunteers brought food, conversation and laughter. A common kitchen enabled family members to bring in and store food to be served to the patient if they didn’t want what was on the menu. Personal care workers took care of hygiene needs, and the nursing staff was wonderful.
Over the two weeks my mom was in the hospice, our relationships transformed: Mom regained her dignity as she was given control back over her environment; I was freed up from being a caregiver to once again being her daughter; and my mom and dad were able to reconnect as he no longer needed to be a care giver and became her companion.
Do I think that a hospital could have provided the same effect? No. Hospitals are focused on fixing the patient. They are, by necessity, run on schedules to which patients must adhere. They unintentionally strip away a person’s independence, and leave family members fending for their loved ones and themselves. In contrast, a hospice focuses on dying as a naturally occurring transitional experience for the patient and family members. It is not something that is to be rushed, or needs to be structured, and it most definitely cannot be fixed. Having been fortunate enough to experience the benefits of a hospice, I am a very strong supporter of the value, both economically and emotionally, hospices deliver.
Hospice Services My mother was a healthy and active 77 year old woman. She didn’t take medication, didn’t have any mobility issues, and seemed, to my family at least, to have boundless energy. On a... more
My involvement with the OutCare Foundation began in the year 2001. Denvil Brown spoke with me during one of our fundraising Streetdances in Navan. We were just getting ready for the Streetdance that year to support the 2001 International Plowing Match, and Denny spoke to me about the the good work that the Regional Healthcare Foundation was doing in Eastern Ontario and how they support new or expanding out-of-hospital Healthcare programs. I decided to join the Board that year and since then the great work that the Foundation has supported has been very rewarding. Whether it was supporting the Aphasia Centre with an expanded program or the Cumberland Home Support newly expanding Day programs, it was always a very good feeling to be able to help these groups along.
In recent years the OutCare Foundation's decision to really focus on palliative care has enabled us to learn more about the numerous service providers in Eastern Ontario that strictly work in palliative care. The great work that various hospices and service providers do every day is so important and the needs in this area are absolutely critical. OutCare is committed to helping where the needs are the greatest in Eastern Ontario, whether it is helping to increase hospice beds, helping to educate and support volunteers, or helping to improve technology and communication, the OutCare Foundation is planning to support whenever and wherever possible.
I am thrilled to be able to help out whenever I can and as Vice Chair I am committed to this cause and am excited with what I think OutCare will be able to do in the near future.
Sincerely,
John T. Bradley
My involvement with the OutCare Foundation began in the year 2001. Denvil Brown spoke with me during one of our fundraising Streetdances in Navan. We were just getting ready for the Streetdance that year to... more
I read this poem at my father's funeral. He was a sailor.
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength. I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come to mingle with each other.
Then someone at my side says: " There she is gone!"
"Gone where?"
Gone from my sight. That is all. She is just as large in mast and hull and spar as she was when she left my side, and is just as able to bear her load of living freight to her destined port.
Her diminished size is in me, not in her. And just at the moment when someone at my side says: " There, she is gone. There are other eyes watching her coming, and other voices ready to take up the glad shout : " Here he comes!"
And that is dying.
Anonymous
I read this poem at my father's funeral. He was a sailor. I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of... more