Robert Clark Young recalled the day his life changed. He was in the shower when the phone rang with a call from his father about his mother. Something was very wrong; she was confused, agitated, speaking jibberish and barely responsive. Robert’s 80-year old mother suffered a massive stroke and was entering a new world of aphasia and ever-decreasing mobility and function that eventually ended in her death. But on that day, Robert thought of how long he’d have to be gone from teaching in Sacramento and the trip back to his boyhood home in Imperial Beach. That was in July, 2008. Robert Young still hasn’t gone back; for him and his parents, a series of escalating health crises changed their lives permanently.
“There was nothing in life that prepared me for this,” he said. “I walked into a situation with no idea of what it takes to care for elderly people. I had to learn fast by doing it.” Young suddenly found himself mired in the language of doctors and hospitals and insurance agents; of lawyers, caregivers and of his mother whose failing language abilities morphed into a post-verbal patois that Young soon began to understand and relate to. He realized that though his mother was gravely affected, she still understood what was going on—and what was said in her presence.
“Everything you imagine that will happen doesn’t happen,” he said recently, referring to the fears and stresses of elder care. “Bad things happen but they’re unexpected. Like when my mom had a heart attack right in front of me, and went back to the hospital. They gave her Tylenol,” Young said, in one of many bitter references to the levels of health care that even well-insured people can expect. The aftermath saw Young equipping his parent’s house like a hospital room with a bed for invalids and support equipment. It was several weeks before his mother was well enough to return home and when she did, Young found himself a virtual prisoner of circumstance, unable to leave even for short outings for supplies. It was a harrowing time and it was only the beginning, too.
One of the “unexpected things that happened” was his 81-year old father’s severe stroke coming only four months after Robert’s mother was stricken and which paralyzed his father’s right side and limited his ability to speak. Robert was alerted to this new disaster when his father suddenly fell out of bed, incoherent and waving his arms. As the EMT’s took his father to the hospital, it dawned on Robert that what was a temporary return home was now permanent. “For sure, I was never going to leave,” he recalled.
Since then, Robert Young has become expert at caring for his disabled elders and navigating the systems that his parents depend on. His opinions on everything from HMO’s to elder law attorneys and doctors’ bedside manner is unusually well informed and he expresses them in a column for Yahoo News on issues relating to elder care—including things like the vast amount of economic value saved by society by unpaid care giving. Young makes a case for some $350 billion expended yearly by millions of Americans who have stepped up to care for their families and save their loved ones from becoming a financial drain on society. The loss is bearable—if you’re wealthy, Young argues, or even if you’re poor. But for what was once known here as the solid middle class, it’s a different story.
This was brought home to him when his father couldn’t eat anymore due to the paralysis of his internal organs on the side of his body incapacitated by his stroke. Progressing brain injury robbed Robert’s father of his ability to swallow and internal paralysis meant that peristalsis no longer occurred. Robert’s father was dangerously constipated. Levels of care needed ramping up and costs ramped up with them and while seeking information on state assistance, Robert was told that his parents income was too high for them to qualify for it—unless they got divorced. Divorce would lower each parent’s income to levels qualifying of assistance, but for a couple married for 53 years and depending on pensions and Social Security interactively, the option wasn’t feasible, though it was repugnant. The family’s belt tightened a bit further and life went on, with difficulty than before.
Robert’s cost in time and stress is measured in health concerns and opportunities lost. He developed vertigo and hyperthyroidism that he considers is a direct result of the strains of the last five years and lost nearly 40 pounds. Sober for 27 years, he uses lessons from AA in daily affirmations that keep him grounded even as he loses touch with friends and associates from the past. Writing is an outlet and besides the column for Yahoo, Young is working on a book on elder care written for those who, like himself, are suddenly confronted with the enormity of the tasks involved in caring for the gravely infirm. The Survivor: How to Deal With Your Aging Parents While Enriching Your Own Life is a combination memoir and how-to guide with instructions on every aspect of caring; this is interspersed with stories of Young’s experiences and notable successes. One of whihc is his father’s continuing function, free of disease complications even while catheterized. Young was told that he could expect that his father would die within six months of the procedure. Two years later, his father functions well and has recently begun to move fingers on his paralyzed side. His website, robertclarkyoung.com, isa clearing house of useful information in anticipation of publication.
Young’s experiences as described in his book are as diverse as dealing with adult diapers—“When you’re pooped upon, you just wash it off and the problem is over in two seconds. I wish all of the challenges in life wer this easy to wipe away,” to confronting one’s old family issues and stresses. Young takes a deep breath and releases it with a smile as he formed his description of what that means to him. “You can’t resent them anymore. Whatever is, is done and gone and the more involved it is, the sooner it heals all the old stuff. It’s like a second chance to grow up again.”
In August, Robert Young will mark his fifth anniversary of being his parents’ caregiver. It’s a marker he’ll look forward to proudly.