Many families struggle with a loved one facing pervasive cognitive impairment — and decision points serve as heartbreaking reminders of life’s fragility. More than just pulling out the keys, some families preside over a sad exit to iconic life. Diagnosed with Alzheimer’s disease, Ronald Reagan shared his final thoughts on the subject, writing, “I now begin the journey that will take me to the sunset of my life.”
Recently, we learned that another world famous personality left the scene due to cognitive issues. Closing ranks around the gradual star of an extraordinarily bright life, the touching letter from the family of Bruce Willis resonated deeply with so many. As the debate rages over whether “Die Hard” serves as a Christmas movie, millions agree that Bruce Willis has defined action – and the action hero – for generations. Not since Errol Flynn has a movie star associated with more memorable action with such mischievous flair and commanding wit.
As Willis’ family struggles to care for someone with chronic conditions, she models the difficult choices family caregivers make every day. The stories are now quietly creeping into the news of the concerns of industry insiders who have acknowledged the decline and growing dangers on movie sets with Willis. The time had come and the family was forming rows – united in caring, worry and most likely sadness.
Without the bright lights of Hollywood or politics, countless families face similar struggles with loved ones. When are the reins handed over – or when are they taken?
Sometimes the weak grip on control creates a rage that is unleashed on family members and co-workers. Some families support and allow a disabled relative to exploit them for their own benefit. In many cases, fear erupts among caregivers and swords cross in confusion over what to do.
Cognitive impairment comes from many sources. Illness, trauma and substance abuse account for most of these declines. Sometimes the loved one with a disability seems ‘normal’, but these moments only serve to confuse caregivers.
“He seemed fine today.”
“Mom seemed to rally around.”
But he’s not well. Mom does not mobilize. The “Valley of the Shadow of Death” can be excruciatingly long and painful for some, and it is especially heartbreaking to see the decline of those who were important in our lives.
Yet all is not gloomy – or loss. The wave of sadness initially causes many to panic and struggle against the feeling 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 most important conquest of living beauty in heartache.
Horatio Spafford understood this deeply when he wrote this hymn to the watery grave of his children who drowned when the ship carrying them sank in the Atlantic Ocean.
“When peace like a river follows my path. When sorrows like the sea roll. Whatever my fate, You taught me to say, ‘It is well, it is well with my soul.’
Much of the angst we endure stems from an unwillingness to accept what is – and we expend enormous amounts of energy and self-deception fighting against the obvious. Fear and despair hinder grieving. 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 save her crushed legs caused by a car accident in 1983, my wife finally gave them up for amputation. As she said, “the fear of losing them screamed that they were already gone.”
Sometimes we cling to things that destroy us – often literally kill us – because our fear of the unknown outweighs the obvious. The Willis family faced that fear and accepted life’s invitation to step down from the stage. Over time, they can share the private victories and poignant moments they experience on 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 joy of living and accomplishment. Dylan Thomas urged him, writing to his father: “Don’t go easy on that good night.”
We fight to the end, not to avoid death, but to fully embrace life.
It allows us to live more freely and “die hard”.
Peter Rosenberger, a caregiver for 35 years, hosts the nationally broadcast radio show, “Hope for the Caregiver.”