What do you have left in your life when you’ve lost the two men you loved most because of dementia? Gone are the dreams of future times together, that data bank of shared memories, that one-time object of so much affection. What may remain is the essence of a relationship and all its fodder for future reflection.
Once the exhaustion of an overwhelming experience has played out, as well as the loss and grief that hover close by afterward like an attentive pet, a caregiver may recognize new signs of life. For me, it was the acknowledgment of qualities in myself that I hadn’t honored before.
Of necessity in caregiving, I’d exhibited a degree of patience I never knew existed in my being. I’d always been a kid quick to discard a task that was too difficult to finish – who wants to untangle the ball of yarn shredded by a playful kitten? You don’t get any quick fixes when you’re caring for a person living with dementia.
So you deal with the situation as best you can and come out a stronger person for having seen the task to its inevitable conclusion.
As I toiled alongside my late husband and subsequent second-life partner while they drifted out of a cognitive field that bore little resemblance to reality, I had to accept their version of the truth. If the fold-up travel alarm clock, taped open so he couldn’t close it, looked like a martini glass to my husband, why not join him in raising my beer mug with a resounding cheers?
When the continuous 10-minute loop of world news blaring from his cell phone had grown irksome, why not gently offer and open a Whitney Houston playlist from Pandora?
Once those uncomfortable moments passed, my resilience was fortified and I could move on to the next task.
What came to me after living through two loved ones’ deaths because of dementia was a level of self-discovery and new identity. Would I have ever dreamed I’d have the patience to endure the heavy burden I carried for months, in fact years? Yet, how else might I have found so much resilience in my constitution? When would I have built my independence?
Time for the true test. Shortly after my husband died, I set off on a series of adventures to hardwire my newly found sense of self-confidence. My first excursion was a five-week solo trip to Southeast Asia. Never doubting the honesty of that small, dark-skinned, grinning, non-English-speaking man in a rope line at the Bali airport, I gave him my $50 bill and passport. He returned beaming with my visa.
Once in Baja’s Puerto Peñasco, I panicked when I couldn’t immediately re-find my beach house, wandering alone through a virtually empty resort. Each time I recovered from one of these escapades, I got a little internal burst of pride in my survivorship – as if I’d just popped a zesty SweeTART in my mind.
Perhaps the most pleasant discovery was the fact that I had never finished loving these two men. I needed a new outlet for the depth of affection within me. Bravely, I stepped into the world of online dating – an experience I wouldn’t relish except for finding my quarry in the end. How lovely to stumble on yet another person of comparable compatibility, curiosity about the world and calm demeanor who was willing to join me on adventures yet to be discovered.
My cautionary note to those who are in the throes of caring for a loved one losing his or her cognitive abilities – there may well be a new life beyond that honors the heartaches and helplessness of your lived experience and complements you in such a way that makes life whole once again.
Mary Nowotny is a freelance writer in the Southwest who has learned a lot about the soft sides of old age, sickness and dying.
