“I can’t wait to have some peace and quiet,” mother would say when the noise of raising five children got the best of her. “You kids are driving me batty” was another of among her “Joanisms” – affectionately named for my mother Joan’s quirky phrases. We proceeded down the list at her recent celebration of life, generating much-welcomed laughter among friends and family. Where can one go to gain a little peace and quiet in this busy world?
Oftentimes, the bathroom is the one place where children may knock but do not enter without permission. It is the one place where peace and quiet and alone time is almost always a given. My mom found another (better) place to gather her thoughts and escape the demands of five children. Every day at sunrise, she would disappear into the woods to absorb some peace and quiet, gather blackberries, pick flowers, and listen to the birds sing. Only now am I fully appreciating the awesome wonder she found there, alone with God and nature. This morning I started off in her footsteps, on a wooded but paved path minus the blackberries.
In awesome wonder I found a finch perched on the rail of a neighbor’s truck. I stopped in my tracks as “she” stayed put within a foot of my reach. After a good five minutes of marveling, I said “thanks mom” and turned to leave as the finch simultaneously took flight. During mom’s final hours, a choir of birds sang a joyful noise outside the care-home; miraculously their singing went on through the night and into her final morning with us. Like a symbol of peace and quiet and awesome wonder, Alzheimer’s relentless hold was finished. Hope and loved prevailed.
We often hear about the forgetfulness of Alzheimer’s and its chipping away at one’s abilities, but there is another ripple effect that is rarely mentioned. While caring for my mother in the mid-stages of the disease, Alzheimer’s wreaked havoc in the bathroom; it took extensive effort to create peace and quiet in that ordinarily “sacred” space. Seth Rogen put it boldly and honestly: “I think until you see it [Alzheimer’s] firsthand, it’s kind of hard to conceive how brutal it is.”
The very basics of daily living became problematic. Mom was fearful of falling; no matter how many precautions were taken or how many reassurances provided. She was confused about the process, not knowing how to apply soap or shampoo; not knowing how to undress or dress; she needed it all taken step by step to keep the sense of overwhelm at bay. She needed consistent gentle cues and the dignity of participating in her own care, to any degree she could for as long as she could. We shared stories and played favorite songs. We laughed and we sang, to help her gain a sense of “peace and quiet.” The warm robe and beauty salon approach to doing her hair helped in the aftermath of getting naked and afraid. There was no hurrying; it was simply our time to enjoy the awesome wonder of peace and quiet, right there in the bathroom.
Bathing, toileting, dressing, eating, and mobility are all self-care things to maintain our health and well-being. Most of us take those activities of daily living (ADLs) for granted, until we are faced with seeing the pieces of independence fall away. Hearing my mother say time and time again, “I’m sorry you have to do this,” was heart-breaking. Attempting to restore her dignity, I reminded her of how she once did it all for me; I was simply returning her measure of love.
My mother has Alzheimer’s and wants to go to the bathroom every five minutes. It became an obsession, not just for my mom but for countless others as evidenced in the discussion threads at Aging.com. Every attempt to rectify the problem failed, from distractions to medical interventions, there was no remedy. Finally, mom’s neurologist surmised that there was an interruption of the “relief” signal within the brain; the fact that she just went … went missing. The frustration and trauma of that period was near equal to her forgetting how to swallow (at end-stage); the muscles involved had lost the “memory” required to do the task.
When I look back on the miracles of seeing my mom pass from this life, I smile about one that occurred in the span of just 30 seconds. She hadn’t opened her eyes in weeks but she was still communicating through touch; her squeeze of our hands said, “I’m still here … are you?” Then, two days before she gained her wings of freedom, she opened her beautiful blue eyes and gazed straight through the ceiling. I envisioned her being in a field a lilacs. It was her one of her favorite flowers, she loved the look and smell of them. My eyes filled with tears as I applauded her (apparent) glimpse of heaven’s gates. “I don’t know what you’re seeing, but I can tell by the look in your eyes it is awe-striking, wonderful, and beyond my imagination. Go mom! Go home! I love you,” I said, rallying as I saw her baby blues for the last time.
People have asked: What can I do? Where can I give? My answer lies in the wishes of my family, in understanding the awesome wonder of peace and quiet, and bathrooms. In those final days, we (my husband, my sister and our dad, and me) sat vigil in turn. We put the phone to her ear for loved ones’ calls of last words and marveled as friends, hospice, care-partners, a chaplain and priest, and the staff and director of “Safe and Secure” each came to mom’s bedside. One by one, “it’s okay to go; we’ll take care of Ernie, don’t you worry,” they said. My dad (Ernie) is among the physically challenged at Safe and Secure Assisted Living, there beside those with memory challenges.
Inside that care-home it is like paradise on a hilltop, as it is filled with dignity and love resonating day in and day out. It is like going home to grandma’s – simplicity at its finest with a smell of fresh baked goods. It is the standard of care I fought to get and finally found. While the bathrooms are adequate, they are out-dated and difficult to navigate in providing such total care.
In honor of mom, in dignity and grace for those who will walk in her shoes or alongside those who do, we have set up a memoriam to update the bathrooms at Safe and Secure. Contributions made to the 8-bed care home where Joan lived will be used to upgrade the bathroom layouts, thereby easing activities of daily living (ADLs). Such improvements will go a long way in continuing to provide the extraordinary and compassionate care my mom received in the final chapter of her battle with Alzheimer’s.
What can you do to help my family march on with life? Help us improve the ordinary activities of daily living for others. Please visit ejrissmeyer.com to see the extraordinary things small acts of love can do; we appreciate your contributions to create a legacy of tender loving care. Celebrate the gift of today … it only comes once.