Their Reality, Not Ours

In honor of National Caregivers Month and with special affection for fellow caregivers, I’d like to share a lesson I wrote about in my new book, “Mom’s Gone Missing: When a Parent’s Changing Life Upends Yours.” Caring for a family member with Alzheimer’s Disease or dementia is challenging in so many ways. Chief among them is watching a loved one fade away, gradually losing interest in things that at one point were precious to them. It’s natural to want to hold onto them through shared memories. Doing so, however, can become a source of confusion and deeper pain.

When my dad was in the final stages of his journey with Alzheimer’s, I had frequent conversations with the chaplain assigned to the hospice team. We talked about dad’s condition, what the family might expect as the disease progressed, and how to prepare for his death. During one of these conversations, Chaplain Steve said something I found to be profoundly comforting. He said if we could find a way to meet dad in his new reality, we would find it easier to appreciate him, while lessening the stress on him.

What this meant was simply accepting his in-the-moment state of mind. Sharing things about our lives without expecting a response. Noticing things about the current moment that we found interesting or amusing. Sitting in silence.

While I understood this intellectually, practicing it was tough.

Shortly after learning this lesson, I was reminded of it again as mom’s memory fell off a cliff and we struggled to know how to relate to her. I think a natural tendency is to want to stay connected by reminding a loved one of the happy times we shared, to be validated in some way for our presence, and certainly to be remembered by name. We long to restore what in many cases is permanently gone. Put simply, we want to hold them in our reality, fighting off the inevitability of theirs.

As I’ve reflected on this since the passing of both parents, I realize it is a process of letting go. Releasing the past, appreciating the here-and-now, and truly seeing the human with whom we are interacting is foreign to what we experience throughout life. We are taught to build and protect. To have and to hold. To preserve whatever goodness we find because it can be so fragile and fleeting. Yet, the tighter we hold onto the people we love, the less space we allow for them to change, mature, and yes, sometimes, to fade away.

As caregivers, we deal with stress, fatigue, disappointment and uncertainty. Our reality is paramount. We forget or simply don’t know that our loved ones have moved on from what we remember into a time and a land we cannot fathom.

Ultimately, I think it’s natural to want something of value for ourselves because we don’t realize the gift of comfort and love we have the power to impart to others. When there is no way to change, fix or re-do life, the peace of acceptance is deeply healing.

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