Caring for her husband profoundly changed Bev's life. Wife, mother, husband Rick's primary caregiver, and a retired registered nurse, here Bev Merryfield shares her story.
We were childhood sweethearts.
From the way Rick slightly lowered his head and tilted it to one side, I could tell he had had enough for the day, facing never ending challenges, and was exhausted. I knew he had had enough because I knew Rick.
Rick and I were high school sweethearts. After I graduated from nursing school in 1980, we married and started a family – two girls and a boy. Rick was self-employed in the construction industry while I enjoyed a career as a registered nurse. I worked in Victoria for the Vancouver Island Health Authority, serving in many different capacities from point of care nursing to leadership roles, retiring last year after 38 years of service.
By 2011 our children had all left home enabling Rick and I to travel more. We had a few great trips when Rick contracted pneumonia twice in a few short months, leading his GP to do further testing and ultimately referring him to a respirologists.
We had begun traveling more when Rick was diagnosed with pulmonary fibrosis.
Pulmonary fibrosis (PF) is a rare and progressive lung disease that causes scarring of the alveoli and interstitial tissues of the lungs. What surprised us was Rick had never smoked and was asymptomatic prior to his diagnosis, so lung disease was not something we were prepared to hear.
Rick was a burly guy so he faired very well with treatment the first year. But into his second year, life became increasingly more difficult with the onset of fatigue, laboured coughing, and shortness of breath. He compensated by working part-time and eventually was forced to stop working completely, managing to live with PF for five years before it progressed to where he was put on the lung transplant list.
Just when things began looking up along came a bug!
On January 23, 2017 at Vancouver General Hospital (VGH), Rick received a double lung transplant as well as five coronary bypass graphs that dealt with plaque blockages as a result of chronic diseases (diabetes) and medications.
After a bumpy few days adjusting to his new lungs, he awoke asking for glasses and a book to read. However, the next day he became drowsier and was once again unconscious by the evening. A stroke was a real possibility and the ICU team leapt into action, keeping us in the loop with each test and plan of care, which often changed one hour to the next. After many days of tests, specialists, and a host of medications, the doctors discovered an extremely rare bug in his lungs. The rare bug caused a cascade of complications and medical challenges bringing many different specialists and expertise to his side as he fought for his life.
But Rick kept beating the odds. His care team called him the miracle man.
Over the next month in ICU, he slowly regained consciousness and was able to move his arms and legs very weakly again. He spent another month on the Respiratory Unit at VGH where he regained strength, learned to breath on his own, and eat! On April 5, 2017 (our 37th wedding anniversary) Rick was transferred to Vancouver's GF Strong Rehabilitation Centre where we believed his road to recovery would be fulfilled. We knew it would take time and was going to be hard work, but that is who Rick was!
We were together every day.
I’d arrive about 9:30am and stay until 10:00pm. I cherished every moment with him. He relied on me to converse on his behalf with his medical team, to help jog his memory, help him with his personal hygiene, keep him company, and share a laugh from time to time.
I could provide personalized care.
Rick being fiercely independent and perhaps a little stubborn, it was important to both of us for him to do as much of his own care as possible. I was able to provide him with the time, direction, support, and encouragement to do for himself while looking for subtle hints that he was getting tired or frustrated – and I could tell not because of my nursing experience, but because of the lifetime partnership we shared. The hospital staff was always there for us and very busy it seemed no matter the time of day or night.
We like being a part of the care team and participating in discussions/decisions.
When Rick was on the ward, it was hard not being part of rounds with the care team. The doctor or staff member often came to talk to us after the rounds. However we didn't feel like we had a voice in the moment of discussions/decisions with the team. Consequently, I often had to hover on the ward waiting for an update or to have questions answered. I didn't want to leave in case I missed the doctor. This contrasted with our experience after Rick came out of surgery and was in ICU, where we valued meeting and discussing his care together with the medical team. When he was the sickest, hanging onto life, that is when I felt we were part of the team.
Sadly, one of the hard truths is that not every one is going to win their fight.
While in GF Strong, Rick got really sick again. First his blood work was abnormal, and then he got flu like symptoms. We knew something was going on. He was weak and slept most of the time. And, while he never complained, he did say he was getting tired of feeling positive one moment only to feel discouraged the next. A few days later he became unconscious and went into septic shock. He never came out of it.
On May 1, 2017, Rick died of post transplant Lymph-proliferative disorder (Lymphoma). Rick's autopsy report was devastating – the lymphoma was so wide spread throughout his organs there was no chance he could beat this. It was heartbreaking and didn't seem fair, but I am so grateful I was able to spend each and every day by his side. I believe the care team saw Rick as not just a patient, but more as a miracle man with a spirit that wouldn't give up!
The role of patient caregiver would benefit from greater definition.
In my experience the caregiver role and its relationship within the patient's care team remains vague and varied depending on where you are in the journey. At home or in the community, it seems more open but in some parts of the hospital you feel “left out” or perhaps not fully heard. I think one improvement may be to determine what style of communication and how much information is most effective for a given patient and caregiver from the onset.
I also think patients and caregivers need more support and guidance about the logistics involved in situations like ours.
When we got the call to say they were ready to perform Rick’s lung transplant, we had to leave Victoria and move to Vancouver. Rick spent 95 days in hospital in Vancouver over the course of his illness. And as supportive as the hospital was from a medical standpoint, there was little help with logistics like accommodations, etc.
I was thankful Rick and I had started saving money early.
We saved so we could hire people to help out at home in Victoria to support Rick’s mother who lived with us, and so we could afford accommodation in Vancouver.
And, I’m so grateful for friends who jumped in and booked a hotel close to VGH and helped me find a place to stay. Our three grown children, six grandchildren, and other family members were stars in their own right too, looking after one another and great grandma while Rick and I were staying in Vancouver.
And I know I could not have managed without the support of my best friend.
She took me away after Rick was gone, and it was that short time away allowed me to fall apart and then pull myself back together again. We shared a lot of tears and memories. Coming home, I had to face life in a new way, a way I had never planned. Six weeks later I returned to work, back to a job I loved but with a heavy heart. And I'm so grateful to everyone at work for being so understanding and supportive.
Rick was part of a large business community, volunteer network, and plethora of sport associations. From the time he was diagnosed with PF, we created strong lines of communications so that everybody who cared about him was up to date with how he was doing. And we still communicate now.
What also helps me are the new traditions I created to honour Rick.
One of the things I do is to make sure he has a present for me on my birthday and one for me under the Christmas tree, thoughtfully chosen and wrapped.
I thank Rick for these presents as if he was sitting right beside me. They are a reminder that even though he is no longer with us physically, spiritually and emotionally he is still very much part of our family.
It’s been a couple of years now, and I still wonder how I coped.
I remember saying to myself, “Just get through today, one step at a time, one test at a time.”
I wrote in a journal to help keep my head above water, to help remember what was being said and to keep track of who was who in the zoo. I wrote because I wanted Rick to read my journal, to understand how much he went through, and just how much of a miracle man he truly was.
Rick was a courageous human being who did not let his illness define him.
If I could talk to Rick right now, I would thank him for being an extraordinary husband, father, and papa – and for allowing me the privilege of being his caregiver, even if doing so was the hardest and most wonderful thing I’ve ever done in my life.
Being by Rick’s side on this journey provided me with the finest examples of courage, humility, and humanity I’ve ever witnessed. It profoundly changed my life, and I am grateful beyond measure.