Many families struggle with a loved one facing encroaching cognitive impairments – and the decision points serve as heartbreaking reminders of life's fragility. More than simply taking the keys away, some families preside over a sad exit to iconic life. Diagnosed with Alzheimer's disease, Ronald Reagan shared his final thoughts about this subject when writing, "I now begin the journey that will lead me into the sunset of my life."
Recently, we learned of another world-renown figure leaving the stage due to cognitive challenges. Closing ranks around the dimming star of an extraordinary bright life, the touching letter of Bruce Willis' family resonated deeply with so many. While the debate rages on whether "Die Hard" serves as a Christmas movie, millions agree that Bruce Willis defined action – and action hero – for generations. Not since Errol Flynn has a movie star paired more memorable action with such a mischievous flair and towering wit.
As Willis' family struggles to care for someone with chronic challenges, they model the daily hard choices family caregivers make. Stories now quietly slip into the news of concerns by industry insiders who recognized the decline and increasing dangers on movie sets with Willis. The time had come, and the family formed ranks – united in care, concern, and most likely sadness.
Without the bright lights of Hollywood or politics, countless families face similar struggles with their loved ones. When are the reins surrendered – or when are they taken?
Sometimes the tenuous grasp on control creates a rage that unleashes on family members and co-workers. Some families prop and enable an impaired loved one to exploit them for their own gain. In many cases, fear erupts from caregivers, and swords cross in the confusion of what to do.
Cognitive impairments come from many sources. Disease, trauma, and addiction represent most of those declines. Sometimes, the impaired loved one seems "normal," yet those moments only serve to confuse caregivers.
"He seemed OK today."
"Mom appeared to rally."
But he's not OK. Mom's not rallying. The "valley of the shadow of death" can be agonizingly long and painful for some, and it's particularly heartbreaking to watch the decline of those who loomed large in our lives.
Yet, all is not gloom – or loss. The wave of sadness initially causes many to panic and fight against the sense of drowning. With help, work, faith, and often a sense of humor, family caregivers in these and similar circumstances can achieve the often elusive peace of mind – and the more significant conquest of experiencing beauty in the heartache.
Horatio Spafford understood this profoundly when he penned this hymn over the watery grave of his children who drowned when the ship carrying them sunk in the Atlantic ocean.
"When peace like a river attendeth my way. When sorrows like sea billows roll. Whatever my lot, Thou hast taught me to say, 'It is well, it is well with my soul.'"
So much of the angst we endure stems from an unwillingness to accept what is – and we spend enormous amounts of energy and self-deception fighting against the obvious. Fear and despair serve as impairments to mourning. Yet in mourning, we accept what is – and receive the comfort promised in Matthew 5:4, "Blessed are those who mourn, for they shall be comforted."
After years of trying to salvage her crushed legs caused by a 1983 car accident, my wife finally relinquished them to amputation. As she stated, "the fear of losing them shouted down the whisper that they were already gone."
Sometimes we hold onto things that are destroying us – often literally killing us – because our fear of the unknown overpowers the obvious. The Willis family faced that fear and accepted life's invitation to relinquish the stage. Over time, they may share the private victories and poignant moments they experience in this journey. I hope they do – to help others face the same fears while borrowing their courage.
Leaving the stage does not mean defeat, nor does it end the zest for life and accomplishment. Dylan Thomas urged this when writing to his father, "Do not go gentle into that good night."
We fight until the end – not to avoid death but to instead fully embrace life.
Doing so allows us to live more freely and "Die Hard."
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ABOUT THE WRITER
Peter Rosenberger, a caregiver for 35 years, hosts the nationally syndicated radio program, Hope for the Caregiver.
