Caregiving is not for sissies. No experience in your life can prepare you for the daily challenges you face when caring for a dementia patient. It is physically draining, heartbreakingly sad, and stretches your patience to limits you never thought you possessed. It rearranges the tiny molecules that hold a family together. It reassigns the roles that we have played for a lifetime; mother becomes daughter, daughter becomes mother. It is like watching someone slip into a dream while they are still awake.
I know this to be true because I spent ten years caring for my mother-in-law, Nan, as she spiraled down through the stages of this devastating illness. I know what it means to care for a dementia patient day-in and day-out for many years. I know that it is a demanding reality that can bring the most loving caregiver to their emotional breaking point. For dementia doesn’t just affect the sufferer, but reaches its tentacles into the lives that orbit around the patient, often leaving them exhausted and defeated.
Initially when I began caring for Nan I was in a defensive mode, solving problems as they were thrown at me. I’d lie awake at night attempting to fix unfixable problems, searching for answers when none existed. I made lists, attacked daily problems with vigor, all the while feeling taxed and frustrated. And the sad truth was that despite my efforts, Nan continued to spiral further and further into oblivion. Neither of us was making progress. My initial plan wasn’t working.
Through observation I had come to realize that Nan no longer lived in a world made up of days or even hours, but instead she lived inside spontaneous flashes of reality. In other words, she was living her life from moment to moment. As quickly as recognition arrived, it was gone again. I knew instinctively that although her understanding was temporary, these moments were not unimportant.
So I set about creating activities that would bridge the gap between the outside world and her awareness by focusing on instincts universal to us all – the beauty of nature, our six senses, the power of music, the love of family, and the balm of laughter. We sat outdoors, touched flowers and fed birds. We leafed through a clearly labeled family album I made for her. We sang hymns and listened to her favorite music. Occasionally we even danced together. (Yes, I found that a wheelchair can easily roll to jitterbug music.) We ate her favorite foods, painted her fingernails and scented her room. We prayed and talked about the many blessings in our lives. I constantly reminded her that she was a good and wonderful person who had led a splendid life. And as the disease progressed, we watched cartoons and took turns holding her dolly. Each day I tried to create little surprises that would ignite even the briefest moment of spontaneous happiness.
Soon I discovered that no happiness was too small or its effect too insignificant to affect positive change. For when she was content and at peace, the old Nan from long ago would suddenly appear out of nowhere in the guise of a familiar comment or facial expression. These moments became the encouragement that I needed to work harder to build a bridge of connection between us. Those moments reminded me of the woman I missed so terribly and proved to me that she was still in there, lost in dementia’s thick fog. I made it my mission to harness these moments and utilize their power in order to bring joy and meaning into her life.
Granted I wasn’t always successful. But slowly my small achievements began to build and it wasn’t long before our connection grew. I found that as my attitude relaxed and calmed, so did Nan’s. I learned that as a caregiver, I possessed the power to alter the tempo and undercurrent of our relationship. I could choose to inject hope and understanding into this heartbreaking situation. And since then, somehow amid all the confusion, we have been able to share surprising moments of unexpected joy and love.
Little did I know at the time, but experts in the field of dementia were in agreement with my approach to Nan’s care. The plan that I developed naturally through intuition is in fact in alignment with methods that are being implemented in both the United States and Europe. This knowledge gives me hope — hope that families will begin to celebrate what a dementia patient can bring to their lives, rather than see them as an inconvenience to be relegated to the sidelines. It gives me hope that others are also embracing the concept that under certain circumstances, it is best to focus on the quality of our days, rather than the quantity. And mostly, it validates that my approach increases the likelihood that I am bringing joy and meaning into Nan’s life.