Life Matters Media
Quality of life at the end of life

A Personal Essay

BY SUSAN M. MATHEWS, PhD, RN, MSBE

What happens when you make a promise to yourself and to your mother “I will never…put you in a nursing home?”  Does life get in the way of those plans and promises? I posit that it does, and painfully so.

My mother is 96 years old and has been fiercely proud of her independence, even though over the years, the actual realization of that self-preservation has required some accommodations.

Mom once owned a large five-bedroom home, two miles out of town, which required her to drive everywhere. But then, her driving became an issue. So, a decade ago, she sold that home and moved into the village where she had either been employed or volunteered for over 55 years. It was a perfect fit and narrowed her driving needs. All was well. However, one day, she scratched her leg at one of her volunteering gigs which turned into a life-threatening infection, putting her in the hospital.

That resulted in another move, into an independent living community. Still, it was within her beloved community where she could maintain old relationships. She adjusted and made new friends. Her independence was slightly redrawn, downsizing into an apartment. But it was her own and it was beautiful.

Mom did not voluntarily relinquish her license. Losing her driving privileges was her greatest loss. Once that freedom to travel at-will was taken from her, and the VW Bug that went with it, she felt the creeping constraints of old age. She was now ninety-one. But, she adjusted. It was 2013.

Now, here we are five years later. The game-changer for the elderly…falls, increasing in frequency and severity, brought us to this point. Her strong Greatest Generation sense of pride translated into no need for a walker “like the others.” So be it! The point of “I will never” …came.

But I did.

She had two serious falls within four days that then required she have 24-hour care. She is mobile but wheelchair dependent. Her speech and hearing are so impaired, it makes it hard to understand her distress or for her to socialize with others. She is cognizant of her surroundings which is both a blessing and a curse.

A week after she moved from the rehab floor to long-term care, Mom’s eyes messaged real terror. I sat on Mom’s bed and asked: “Mom, you look so worried. What’s the matter?”

Eyeball to eye ball, coming from the lips of a woman who struggles to put together an audible sentence, she responded with a full deep-throat voice: “This change has been terrible for me. I have worked my fingers to the bone and this is what I get?”

With tears streaming down her face and mine, I pleaded: “I am so sorry, Mom. I know. What can I do for you? Please, I will do everything possible.

In that moment, I prayed that I would not break another promise.

With the softness of a mom who was grappling with life’s turns, she whispered, “I want to go to the 2nd floor.”

This is the floor she came from while in rehab. A simple request, one that could be managed if administration would allow it. And they did.

Why at 96 years of age does this need to be her last slice of life? Everyone in her generation is gone. She wants to be with them. But she keeps adapting. Her amazing inner strength has allowed her to find the “new normal” with each change in her life.

So, as a daughter who has been part of the healthcare industry for over a half century, how can I reconcile this broken commitment, “I will never…?”

Residents in the nursing home look frighteningly debilitated but are they feeling that? Are they lonely? Or are they quietly grateful for a safe, warm room called home and others around them, either better or worse off? Are we seeing our future in them and reacting with outrage that this is their plight? Or is it pity or more precisely, self-pity?

I recently read a column in the Wall Street Journal by Lance Morrow, a senior fellow at the Ethics and Public Policy Center and a former essayist for Time.

“When everyone is outraged, then real grievances lose their meaning, and the endless indulgence of outrage becomes, objectively, immoral.”

When I visit Mom, I am learning from the residents that acceptance brings peace, not defeat.  The urgency and the endless indulgence of outrage spewed forth in our world is not evident here. There is a cadence of necessity; no frills.

A genuine expression of kindness and gentle caring marks the faces of staff even though there are never enough staff to make it work as it could. Call lights flash and repetitive beeps demand to be answered to allow the resident to maintain the human dignity we all treasure and they deserve. Yet, the pace is what it is. It’s called acceptance.

My “I will never…” haunts the recesses of my mind but I am attempting to acknowledge the new normal, yet again, that Mom is working toward. She is my role model. But, when she cries, I cry.

I assume when I reach 96, I will have had many opportunities to abide the changes that come with aging. Rather than an endless indulgence of outrage because my mom is where she is or that this could be in my own future, I pray for the grace I see in my mother to accept the things I cannot change.

Nevertheless, a promise…not kept.