One of my grandmothers lived to 103, politically active to the end. My other grandmother died at 98, able to bake a pie from scratch until her last years. So when my mom showed signs of dementia at 80, we were unprepared.
To paraphrase Carl Sandburg’s poem “Fog”, mom’s dementia arrived “on little cat feet”. At first, she repeated stories. I tried not to make anything of it. With five kids, it was an understandable oversight.
But when she told the same story two or three times in one phone conversation, medical tests confirmed what we already knew. Mom was not “forgetful”; she had vascular dementia.
My dad’s response was thoughtful and deliberate. He and mom moved 500 miles south to be closer to family and world class medical facilities. He chose a senior friendly home. He gently finagled her car keys.
Dad delivered in spades on a vow made sixty five years ago to stand by mom “in sickness and in health”. I marvel at his patience. It’s not a quality his business colleagues would remember him for, nor would his children. But with mom’s illness, he has learned modest cooking skills, keeps her on schedule, and ensures she has 24/7 care—mostly him.
Knowing choices confound mom, dad cooks and plates her food before wheeling her to the table. Color or texture variations distress her. She peppered scrambled eggs recently, only to pick up her fork and painstakingly remove each fleck of pepper.
One breakfast, dad noticed me watching as he stirred a bit of sugar into mom’s orange juice. “She likes it this way”, he said, answering my unspoken question.
At 88, my dad is mentally razor sharp, still on the board of directors for an energy company. Mom is a different story. On my last visit, a fly buzzed by mom’s face. Dad’s failed attempts with the flyswatter reminded me that his macular degeneration gave the fly the advantage. Mom blurted, “A blackbird just flew by.”
I have no doubt that my dad wishes my mom could still carry on a conversation, dress herself, and cook his favorite meals. But she can’t.
So when Pat Robertson was asked on his radio program how he would advise a husband whose loneliness with his demented wife who no longer recognized him had driven him to seek the companionship of another woman, it was not a moot question. In case you missed the kerfuffle, Robertson responded that after the husband ensured his wife’s custodial needs, he might acknowledge the realities of his wife’s condition and divorce her to pursue companionship. He added that this was a painful issue, and that dementia was a kind of a death.
Robertson was tarred and feathered for his response.
Yet when I heard his comments, the scriptural imperative to “judge not lest ye be judged” came to mind. I would not wish this journey with dementia on any family, nor presume to make their choices.
Dealing with dementia is often physically, emotionally, and spiritually grinding for caregivers. My dad is navigating mom’s dementia the best he can, threading his way through dementia’s tangled path, where the best choice is rarely self-evident or straight-forward. Others might make radically different choices.
Each situation presents unique challenges, demanding caregivers winnow care options and weigh the inevitable tradeoffs. The best environment for those prone to wander might be the safety of a locked memory care unit. Too often, the caregiver’s needs and health are overlooked in favor of the needs of the dementia patient.
We are the lucky ones. Mom is petite and sweet. I have witnessed others barricade themselves in their rooms, throw potted plants at their caregivers, and use words network television can’t.
We wrestle with our consciences, knowing the window for mom to make her own care decisions shut long ago. So we close our eyes and imagine what mom would want for herself and for us—and we choose. Occasionally we long to trade the subtle nuances surrounding each decision for black and white simplicity. But dementia’s fog only gives us shades of grey.
To “love one another as I have loved you” is no small task. Wrenching care decisions too often require settling for the best of bad alternatives. And sometimes our most loving response takes great courage.
Originally published in the Eden Prairie News.