Alzheimer’s disease robbed my mother of much memory. And though she is usually pleasant and gracious, the angst the memory loss causes is sometimes brutal, taking a toll on her and us who care for her. Developing a mindful approach to her condition— not getting lost in the stress of overseeing her care, but instead savoring the brighter moments and being open to unexpected blessings—has enriched my life. And at the same time that I have become like the parent and she my child, my mom has become the teacher, deepening my appreciation for the focus on the present and compassion that is mindfulness. This became clear to me last year after a particularly challenging point in her care.
My Mom had been suffering for months with diarrhea caused by an antibiotic-resistant colon infection. Her health was greatly compromised, with dehydration an ongoing concern. My husband and I brought her to a hospital an hour away for a new outpatient procedure that was proving to be successful in solving the problem—a problem she never recalled having. Throughout the drive she repeatedly asked where we were going and why, trying to trust our answers while doubting that she’d ever had diarrhea.
At the hospital Mom’s trust in us couldn’t override the terror of being changed into a surgical gown, placed on a gurney, and prepped with an IV for a procedure to cure a problem she “knew” she didn’t have. She must have felt she was living in a nightmare or a Stephen King novel, because no matter how I tried to comfort her, she was furious, as if I was willfully ignoring her.
It wasn’t hard to imagine how she felt, so I hid my frustration. But I was feeling it, along with exhaustion that had been building from spending hours and energy transferring her in and out of wheelchairs and cars, transporting her to doctors of increasing degrees of specialty, engaging in phone conversations with providers of every level of healthcare. I’d been working hard to relieve her suffering, but now was bearing the blame for it. An Alzheimer’s disease-addled brain is not discerning.
A couple days later Mom and I were visiting at her residence when she told me she felt happy and healthy; thankful to be living the life she was living. Her gratitude for her life, exactly how it existed in that moment, was inspiring. It filled me with joy, erasing the effects of the stress and fatigue of the prior weeks. And every question she asked over and over again became just another chance to communicate the love I knew helped fuel that happiness.
Then a former doctor of Mom’s stopped, asked how she was doing, and she told him how lucky she was to have “nothing wrong” with her. Since he’d known of her colon infection, I mentioned the success of the procedure she’d had and how much healthier she was since she no longer experienced diarrhea.
“What?? I never had diarrhea!!” she exclaimed with complete bafflement.
With a smile, the doctor mused, “Ah, the epitome of living in the moment.”
The profundity of that comment will forever stay with me. You see, I practice mindfulness meditation, sitting on my cushion for twenty minutes a day when I can, training my mind to dwell less on thoughts of the past and worries about the future, and more on fully experiencing the present—in other words, living in the moment. And here was my mom, exuding the kind of happiness mindfulness can make possible.
I still see the cruel realities of Alzheimer’s disease. I will never feel good about all that it has stolen: the independence my mom felt she was ensuring by exercising and staying socially active; her ability to live a full, active life; even procedural memories like how to brush her teeth or walk.
Fully experiencing feelings about that reality means there are times I need to grieve. I’ll play music—sometimes Steve Goodman singing The Dutchman, a love story about a man, his dementia, and the spouse who joins him in his own reality, living in that moment with him with great compassion. I play that song over and over, and I cry, noticing a sensation in my heart, a relaxing of any hard edges.
Each time those tears flow, my heart feels warm and soft and vulnerable, ready for more love, more loss, more joy—and more lessons: lessons I can only learn by being open to experiencing the moment just as it is. For if I’m not, I will miss the valuable gifts my mother, even in her state of dementia, has to offer.
Gayle Florian, B.A., Psych., is a writer and speaker whose stories offer encouraging lessons on compassionately caring for ourselves and others living with stress, illness, loss, and other challenges. For more info, please contact her at: gayleflorian@gmail.com