Skip to main content
What is PH?
Types of PH
Living with PH
Find a PH Centre
New to PH Kit
PH & COVID-19
Support During COVID-19
Q&A With Dr. Mehta
Home Exercises for PHers
PH Research Scholarships
Applications for PH Research Scholarships
Clinical Trials in Canada
Participate in Current Studies
Canadian PH Community Survey
PH Buddy Program
Host an Event
The Pulse : Our Monthly Newsletter
2021 Community Conference
Leave a Legacy
Take Action PAH
PH Awareness Month
World PH Day
Rare Disease Day
Do what you can
When you can
For whom you can
And know when you can't.
This bit of pithy wisdom rests boldly framed on our bathroom wall. It was written as a prescription by one of my wife's (Robyn) myriad of medical specialists; a not so subtle reminder of the imperative need for self-awareness and self-care. Robyn and I both have great difficulty saying no, often at the expense of our own health. With both of us negotiating longstanding medical minefields, the good doctor simply reminded us that we are unable to help others if we don’t look after ourselves first.
Ours is a cute medical tale of love. I offered my assistance after my not-yet wife had severely rolled her ankle. The rest is history. Since then, I've battled my own neurological health demons, with symptoms resembling strokes and intense migraines. I've had the easy end of the stick. My wife's world came crashing down on September 11, 2013. Her hands stopped functioning. She couldn't move her head and she had lost all strength in her limbs. It was a very dark and very long time until we finally had a diagnosis: mixed connective tissue disease encompassing four auto-immune diseases, including scleroderma. Secondary diagnoses of pulmonary arterial hypertension (PAH) and interstitial lung disease followed. Needless to say, we had our hands full. So, the question is, how do we manage and still maintain a joyful outlook on life?
Perspective is crucial. As a teen, after my first exposure to primary caregiving with a high-maintenance grandparent, it was suggested that I was talented and should pursue caregiving as a career. I responded with the repugnant look that only a teen can muster. Caregiving was a dirty word. The irony is, I have been in the profession of wellness in one form or another for almost 40 years now. I find the term caregiver to be harsh and pedestrian. We are all at some point, either individually or in our community, offering to lift up children, siblings, parents, friends, or strangers. It is the human experience; one of grace and the support of quality of life. I can't imagine a more important role. Dr. Bruce H. Lipton said: "the moment you change your perception is the moment you rewrite the chemistry of your body."
One of the things that became immediately clear in the early stages of my wife's illness was that my wife and I absolutely had to live one day at a time. It took my wife getting sick to truly bring this lesson home. Live for today. One day at a time. Sometimes, it's one hour at a time. We diligently map out our appointments, especially the medical ones and we endeavor to keep our calendars clear. This is a survival tactic. Big hopes and painted dreams, as fun as they are, fade quickly in the face of a disease flare ups. Our friends and family are aware that if we say yes to going out, it's contingent upon us having the energy, and that we may cancel at the last moment. Keep your “social circle” in the loop, they are part of your team. You are not alone. Build a team. That team should include doctors, specialists, counselors, pharmacists (very helpful), family friends, and even relevant groups on social media to bounce ideas and problems off of. They all sit at the boardroom table looking out for our welfare, not just their patient.
Meditation has been a lifesaver for me on multiple levels. There are so many kinds. I focused on rigorous Japanese Zen, but I recommend very simply to find time to sit quietly, preferably in nature. Watch your breath... gently. Allow your thoughts to come and go like clouds. One of the key things we all forget is the power of release found in a full exhalation: not just breathing out, but letting it all go. Preferably, multiple times a day. I go weeks forgetting this trick, and the tension that is immediately released is huge. It provides a much-needed surge in power as well. Nature has become my respite. I meditate by the ocean and in the trees every night. A highly recommended resource book is simply called
Burnout: The Cost of Caring
, by social psychologist Christine Maslach. Finding opportunities for respite are challenging, and even when they are available, leaving a loved one for even a few days can lead to huge feelings of guilt. However, respite is crucial for one's long-haul stability in caregiving.
Another life saver has been the
. For those unfamiliar with this theory by Christine Miserandino, we all start our day with a limited number of “spoons” that represent available energy. As a caregiver, it is very easy to deplete these spoons rapidly. Various factors come into play making every day unique: fatigue, weather, family, work, etc. Some days, just getting out of bed and taking a shower can use half your spoons. Work and domestic chores take more. Perhaps you have parenting demands, and suddenly you can have only one or two spoons left for caregiving and nothing left for yourself. So many times, my wife and I arrive at dinnertime devoid of spoons/energy and we end up ordering in. Often, we decline social invitations due to our exhaustion. We learned very early on in the survival process to save a few spoons for enjoying those aspects of life that keep us sane.
is also a handy way to explain to friends and family why you may not be as present as they may like.
I strongly believe that being open to simple, spontaneous, beautiful moments that arise when you least expect them can make this existence worth living, even when faced with the illness of a loved one. Looking for magic keeps us young and graceful in the face of adversity. Robyn and I take turns “Driving Miss Daisy.” Generally, it comes down to whoever is safe to drive, and the experience is one of renewal and rest. We bumble into the countryside with no specific point of destination, and more often than not we are blessed by magic.
On one particular occasion, when I wasn't well, Robyn assumed caregiver/chauffeur duties. As the farmlands slid by, I drifted along with the scenery: beautiful farmhouses and graceful trees. I was never fully present on these adventures, but on this day, I spied a huge red balloon bobbing over a distant field. As we drove past Mitchell's “arm” Market (the F in Farm had fallen off the year before) I pointed and grunted. Robyn translated as only a wife can, and within minutes we were face to face with the world's second fastest bird, the gyre falcon. The trainer was in the middle of a session using the balloon as a beacon for the falcon, and Robyn was permitted to hold one of the birds. It completely re-energized her and she carried that energy into the following week. Magic. Kismet and amazing, much needed magic.
For any caregiver, finding magic is essential to maintaining one's long-term sanity, and avoiding the dreaded burnout. Watch for Magic. It doesn't need to cost anything; it arises when we least expect it and only requires us to be aware.
Contributed by: Vincent Pollitt, Caregiver, Victoria, BC
Vincent Pollitt, Caregiver, Victoria, BC
Read more Caregiver stories