It happens all the time, all over the world. Two people love each other. You build a relationship, a partnership, and ultimately share a commitment and a life. You grow and make plans, hopeful for the future. Somewhere in the back of your head, you know that something could happen that feels like the universe having a good chuckle at your expectations. It is easy to dismiss these thoughts as ‘not right now’ or ‘perhaps when we’re older.’
Then one day you hear a faint belly laugh. One of you is diagnosed with something frightening, and everything changes. Of course, everything shifts for the person with the disease, but the changes are just as profound for those closest to them.
Just as all families who are faced with a diagnosis do, we discovered a new path the day Larry was diagnosed with Parkinson’s. As his partner and wife, when it appeared before me I took his hand so we could walk it together.
Sometimes it is joyful and beautiful – the opportunity to tell our story, to make a difference and to connect with a remarkable community; the opportunity to offer life-shaping lessons to our son; a chance to clarify, simplify and rebalance our life.
Sometimes it is sad or infuriating or frightening – grieving our pre-Parkinson’s life, seeking balance in an ever-changing situation, adjusting to Larry’s uneven physical and energetic capacities, shifting the balance of our parenting roles and facing endless uncertainty. Larry and I are re-examining and redefining our roles in our marriage, knowing we likely will need to do this again and again as the disease progresses. We are re-prioritizing our daily lives, while also discovering that often self-care means we cannot meet the expectations of those around us, including each other. And on and on.
Those who have been partners of people with Parkinson’s for much longer than I have know that the above lists will get much longer before the food truck pulls away. For us and so many others, the growing pains are real.
We all know that everyone’s journey is different. But as partners and most trusted caregivers, we have a front-row seat for our loved one’s experience. We may not be experiencing the disease directly, but we have an important role. We are not just helpers, healers and emotional support. We are witnesses, observers.
We see their highs and lows, are inspired by their strength and humour, and are empathetic to their worries and grief. We are sitting beside them as they drive the roller coaster, an extra pair of eyes and ears on the track. This can be just as challenging, but also just as enlightening.
We can and are supporting them and choosing the spot beside our dear ones. Our journey is not easy, but it’s full of all the thrills and lessons that a rich life brings.
Caregiver and wife
See Larry Gifford’s podcasts about life with Parkinson’s at: https://globalnews.ca/author/larry-gifford/