Feb 10, 2012

If We Must Choose, Choose Compassion

If I have to choose when considering what to say, I try to choose with compassion.

By Pamela R. Kelley
Alzheimer's Reading Room

I was fascinated by the recent article presenting us with the choice, Should A Caregiver Be Truthful or Kind?

It seemed like there were a couple of topics embedded within. It seemed like they needed to be dissected before I could really understand what had piqued my interest and the many who commented.

The first topic was the practical one – advice on how to deal with the questions our loved ones ask about those who have predeceased them.

The comments reveal what a tricky question this can be, from one person to another, or from one moment to another for the single person for whom we give care.

Subscribe to the Alzheimer's Reading Room

A related subject emerged in the comments: How do we reference Alzheimer’s Disease itself to the one afflicted, particularly as the disease advances from moderate to advanced stages? I would love to see a stand-alone article about this.

The second topic was the ethical one Bob wanted to focus on, the subject of lies. What are deceptions, small and large, that we might engage in as caregivers without disrupting our moral compasses and self-worth?

The third topic pertains to perspective, a reminder that we often experience some psychic dizziness as we shift focus from our reality to Alzheimer’s World and back again and yet again.

After sustained practice, many of us grow skilled at adopting the ability to consider the world from our loved one’s perspective before speaking or acting. This is not instinctive or intuitive, and it takes practice before we glide naturally into this illuminating point of view.

I start from a basic assumption: No matter where each of us stands on our caregiving road we all want to do the best we can to ease the burdens born by our loved ones who have a disease we can’t always understand. My assumption is partly based on the fact that we’ve all turned to The Alzheimer’s Reading Room to some degree, for information or support or suggestions. This seems like a fair assumption. Clearly, we’re not indifferent to the comfort of those who receive our care.

We start from this: We want to do the best we can to ease the burdens our loved ones bear. We are dedicated to helping another. That’s a simple distillation, but to me it’s an important one. From that basic premise, I can see that the conversation about “cruel truths” and “kind lies” is about something else. This is a conversation about compassion, a subject that doesn’t come up often in discussion at all.

Compassion isn’t simple – it’s not just one attribute. There’s the sense of sympathy or caring for the person who suffers. There’s the affection we feel for the one in our care, the warmth of our hearts. There’s our clear recognition of their needs and their suffering. But there’s also our sustained and practical determination to do whatever is possible and necessary to help alleviate their suffering. And then, informed by all of these, compassion spurs action.

When I apply this formula of compassion to my caregiver’s role, I can most readily glide into Alzheimer’s World. When I mentally exchange myself for my mother, I more clearly recognize her needs and her suffering as she inhabits a vastly incomprehensible world. I have boundless sympathy for this shy, gentle woman who now lashes out verbally to keep new faces and situations at bay, and for whom almost all faces and situations are new. When her words would otherwise sting, I call to mind the countless examples of her unfailing devotion to my care throughout childhood. It suffuses my heart with a daughter’s love.

From that place, the question isn’t either-or, truth or kindness.

I ask rather, what is possible, what is necessary?

When my mother’s sense of self is stuck in the Forties, her truth is that she hasn’t married and hasn’t had her children. It’s not necessary for me to correct the record. Doing so isn’t kind. My responses are truthful in her context, though not necessarily so in mine. I listen with all the sensitivity I can muster.

Each of the topics raised in the initial article can be addressed compassionately. On those “how-to” questions, seeking advice on answering questions about the deceased or the disease. The answer that works is the one that is necessary to alleviate the anxiety of uncertainty. The nature of the anxiety is in flux, revealed only by the circumstances in which it arises.

My mother rarely asks me where my deceased father is. Those days seem behind us now. Instead, she’ll look at a family photograph and ask who’s who. I slowly repeat the same formulation about our family’s cast of characters. Starting on the left and working to the right, we end with my father.
With regularity, Mom will fix me in her gaze and ask, “Is he gone?” I’ll pause, take her measure, and then usually repeat it back with an affirming nod, “Yep. He’s gone now.” Sometimes she’ll remark on his goodness.

Sometimes Mom will get angry with me, “Nobody told me!” Sometimes she surprises me. “Gone? You mean dead? If he’s dead, just say dead.” I’m comfortable through all of this – having read the signals of what she needs through the recitation of the four members of our family positioned to Dad’s left.

I’m sensitive to her pain. I’m aware of the wounding power of seemingly innocuous words upon her. If I have to choose when considering what to say, I try to choose with compassion.

More Insight and Advice for Caregivers      

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

Original content Bob DeMarco, the Alzheimer's Reading Room