Please tell us a bit about yourself and your connection to Parkinson’s disease.
My husband was diagnosed with Parkinson's disease (PD) thirteen years before his passing, a year and a half ago. As I journey the road of post-Parkinson’s and caregiver recovery, barely a day goes by that I don’t spend some time reflecting on our lives together and our lives with Parkinson’s! As I look back on the early days with PD, I am awed by how strong my husband was as we slayed dragons along the way and celebrated small victories. It was a journey of love, but a complex one, medically and interpersonally, with growing challenges as the years pressed on.
What I describe in the following paragraphs are highlights from my story of our unique journey with PD. I have learned that this disease impacts each person differently and that each carepartner brings a unique mindset, skills and experience to the role. My journey, hopefully, will not be everyone’s journey! I share my experience without much “sugar coating” with the wish to be supportive for others experiencing similar challenges. I do this knowing how much we can learn from each other.
As Parkinson’s arrived to throw a curveball at our lives, together we said, “Got this! We can beat this! I will be the exception, the outlier.” My husband was determined to not let PD win. And I too was committed to my role as a spousal carepartner! Together we were up for the challenge. We were going to fight this together.
In the beginning, the disease strengthened our bond with each other. We learned about PD together, strategized together, and shared so many emotions together: fear of the unknown, discomfort with uncertainty, humour and laughter, joy, sadness, vulnerability, fear, and invincibility. Our journey together was an emotional one. It was a rollercoaster ride with bursts of shared optimism, hope, gratitude, and many hugs along the way.
Over the years, however, Parkinson’s proved to be an all-consuming foe and increasingly relentless in its progressive degeneration. We were aware that the journey with PD was individualistic in its progression, sometimes slow, sometimes not. And we knew it could become a very difficult journey... and it did! Parkinson’s disease, no matter how it strikes, is a life disruptor. Who said life is fair?
Sadly, despite a shared spirit of invincibility, optimism and determination, my husband was not one of the fortunate ones. His PD journeyed through all five stages with increasingly debilitating motor symptoms and non-motor symptoms. Parkinson’s and Lewy Body Dementia ultimately won the battle.
How did life change when your loved one was diagnosed with PD?
Life changed slowly after diagnosis. We continued to optimistically engage life and to enjoy each day although quietly fearing the unknown. We travelled, entertained family and friends, celebrated family traditions and continued to pursue our hobbies and interests. We felt we were in charge of Parkinson’s rather than the other way around. After a few years, we did have to adapt to the challenges of PD, but we still felt in control and enjoyed a quality life.
As time marched on, we were mindful of the challenges that PD might present. We often discussed the uncertainty of the future and planned for the challenges that it might present. About this time, my husband began speaking to Parkinson’s saying, “Please, if you must, take my legs, my mobility but leave my brain intact.” In hindsight and filled with sadness, I realize that we were experiencing the lull before the storm.
I have heard some describe Parkinson’s disease and caregiving as like running a marathon. But an individual runner trains for the race, scouts out the route to discover the challenges, the hills and the valleys, and has a plan to pace himself to overcome these challenges on the way to the finish line. As a spousal carepartner, I arrived unexpectedly at the start line with neither training nor experience and without knowledge or a plan. I learned as I went and led from my heart.
Shifting the metaphor just a little, as I look back on my experience, I realize the journey was more like running a three-legged race with my husband, but over a marathon distance. Rather than being joined at the ankle or the knee, we were joined at the hip. We brought to the partnership our idiosyncrasies and strengths and weaknesses, and what worked well in our marriage and what didn’t. Sometimes we shared a sense of flow together and sometimes the journey felt like a tug-of-war, each of us struggling in our own way, stumbling along the course.
As I wrap my head around PD and the world of the carepartner, I think of the parable of the boiling frog to describe how life incrementally changed along the way. The fable has it that a frog dropped into boiling water will leap out immediately to save itself. However, a frog put in tepid water which is gradually warmed up, will not sense the change and will boil alive.
In our situation, for the last 5 years or so, the PD was subtle but silently heating up to a boil. It didn’t change our lifestyles all that much through the early years... until suddenly it did! We were comfortable in thinking we would dodge the bullet. The changes were initially subtle but secretly cumulative to eventually reveal themselves and truly capture our attention. There came a point when the disease became front and centre and loomed large. We realized we were no longer naively in charge! The disease was.
Not surprisingly, as PD progressed, so did the challenges for me as a carepartner. As the years marched on, my husband clung to his autonomy in the face of mounting physical and mental challenges. His autonomy, perhaps more aptly described as stubbornness, and determination were a double-edged sword. His positive mindset gave way to immense frustration, fear and anger at the disease. And sometimes I took the brunt of his anger and impatience.
With feelings of growing vulnerability, my role began to shift from caring partner and cheerleader (sometimes coach) to caregiver and nurse. My husband began falling a couple of times a week, broke a hip, a rib, and a wrist, and sported ongoing contusions. He developed REM sleep disorder, paranoid delusions, hallucinations, and issues of general cognitive decline. His speech became barely intelligible and dysphagia led to bouts of aspiration pneumonia. As his health declined, so did mine. I was now on duty 24/7. Sleep became a luxury. I was stressed and anxious beyond measure and truly overwhelmed by the vigilance required to keep us both safe. I was approaching burnout.
About this time, a guardian angel appeared! My son recognized that I was in distress and that I desperately needed help. No longer could I function without a major intervention! From three thousand kilometres away, he arranged for a company to provide the services of two amazing personal care workers. Then he miraculously arrived to ensure the plan was in place! These amazing workers became an invaluable support to both my husband and me. Finally I had the opportunity for eight hours of respite a day and was able to take a deep breath and indulge in taking care of me. I am grateful to these workers who brought rekindled joy, some levity and superb care to both of us.
What have been the most challenging and rewarding aspects of being a carepartner?
I fondly hang on to the memory of my husband saying, on a number of occasions, “I could not have managed this disease without your being with me, without your support...” often with tears in his eyes. At those tender moments, I felt loved and validated. Knowing that I did the best that I could and that he appreciated the difference I made to his quality of life throughout the journey was my heart-felt reward.
My husband was never one to do anything in moderation. He truly was 'larger than life'! Our sons affectionately called him 'Big Guy'. He was professionally accomplished, had a zest about himself, and was driven to achieve endless goals and dreams. He was a brilliant man, gifted author, gifted writer and photographer, and the list goes on. What was most challenging for me was the grief I experienced as I absorbed his fear and trauma. Grieving for both of us began at diagnosis and continues for me even now almost a year and a half after my husband’s passing.
Grieving is messy. It can be turbulent and relentless. Sometimes I grieved what I sacrificed to care for my husband, and more often, I grieved his losses and the impact PD had on our marriage. It continues to sadden me that Parkinson’s stripped him of his dreams, his talents, his pride, his dignity, and ultimately his life. It broke my heart and still does.
What are some valuable lessons you have learned from being a carepartner?
I acknowledge that being a spousal carepartner was hugely challenging and rewarding – and probably the hardest task I have undertaken in my lifetime. Providing day-to-day support which became increasingly demanding overtime, I felt like a frontline healthcare worker and realized that I was an important player in the continuum and quality of my husband’s care.
Along the way, I learned a lot about myself, my partner and the disease, and I continue to learn. A few of the lessons are as follows:
- The importance of finding hope and gratitude even at the most difficult of times.
- I found that I had to rescript who I was by embracing the meaningfulness of a changed life experience as I provided care and support for my husband.
- I learned that building emotional agility was imperative to becoming a resilient carepartner. The spousal carepartnership is an emotional one. It is not always a gentle roller coaster ride and requires much agility to cushion one along the way.
- We bring who we are to the carepartner role – our strengths, our weakness, our blind spots, our temperament. I certainly wasn’t the perfect carepartner. I would be surprised if anyone is. After all, we are human! I discovered the importance of learning along the way and of embracing a wide circle of care to help fill in the gaps. I learned that I needed love and support and sometimes a helping hand when I floundered, when challenges became overwhelming. I was not perfect, but my heart was in the right place. The hands-on support, the telephone calls, the late-night texts, warm hugs, a shoulder to cry on, moments of humour and the willingness of friends and family to step in and take charge as needed sustained me. These wonderful people brought joy to my husband and joy and respite for me. All that said, I learned that caregiving can indeed have a lonely quality about it. In the spirit of having 'a stiff upper lip' we may hide such loneliness from view. So much of the carepartnering experience is invisible to the world and community. It is highly personal.
- Parkinson’s impacts relationships. It impacts the whole family system. Sometimes unrelenting demands for care hour by hour, day by day, can erode the unique healing space of shared empathy and compassion. The disease can overwhelm us and cast a shadow over a loving relationship. I learned that honest heartfelt open communication between partners strengthens the relationship and the response to the disease. When asked, “How are you?”, to say “fine” avoids the hard conversations about grieving, emotions and loss, conversations that are mutually supportive. I learned that emotions were 'the elephant in the room' begging to be addressed.
- I learned that as a carepartner that I was not invincible, that I couldn’t do it all myself. I never thought I would burnout but toward the end I did. I am so thankful to guardian angels, particularly both sons, who each saved me from tunnel vision and folly. I was stubborn but eventually reached out and accepted help and support from them and an ever-expanding circle of care, including family, friends, and healthcare professionals. I learned that the carepartnership is at its best when it is a component of a strong care team.
- From the time of diagnosis, it is important for the whole family to foster the spirit and skills of resilience. I learned that life with Parkinson’s is messy and unpredictable, filled with challenges, some little, some big, some fair, some unfair, some predictable, some not. It is emotional! Our challenge is to navigate the journey with deep compassion for our loved one with PD, and for ourselves.
- I learned that self-care doesn’t just happen. If not scripted and managed, it can fall victim to the demands of the caregiving situation. It is not selfish. It must be prioritized. By its nature, it requires the cooperative support of family, friends and the loved one with PD. Caregiver self-care is at the heart of the journey. In hindsight, I realize I lost myself for a while along the way, became consumed with caregiving – by choice. As I tried to do the impossible, I tossed self-care aside. I would encourage others to not do as I did!
What is your advice to other individuals in a caring role?
Take care of yourself! Dare I say, take a deep breath, be present, and celebrate each and every day and each other. I am sure each of us does this differently. Be clear about being strong – physically, mentally, spiritually – and make it happen.
I certainly got caught up in the daily minutia of my role and ended up, at times, spinning like a hamster on a wheel. I admit that I got caught up in the drama of over-functioning. I was slow to accept the help of others. If you are like me, I would encourage you to take a step back, take time for yourself, for reflection, and hold space for yourself. Engage others in the care of your loved one. By doing so, you will likely be more grounded and able to foster a mindset of compassion and empathy for self and others. You will be taking a positive step toward self-care.
If you find yourself struggling emotionally and spiritually along the way, get professional help. The earlier the better! Such professional support can truly ease the impact of the role.