I was on my way home during the hot dry summer of 2020 when I saw my neighbor Alice and her dog, Bailey, trying to cross a busy street on a hot afternoon in July. I stopped and gave them a ride home. Eventually my best friend and dog, Bandit, enjoyed hanging out with Bailey and they became the happy centerpiece of my friendship with Alice, who suffers from dementia.
The wagging dog tails fascinate Alice as they sniff and play about in the backyard and she refers to them as, “serious tails.” Soon Alice’s care support team expanded beyond her son, who lives nearby, to include neighbors, her friends, professional caregivers and the police.
How do caregivers manage it all? I gathered a box of grapefruit for Alice’s caregiver Cindy, who enjoys fresh grapefruit juice, and stepped out the door to the merry music of the I Believe Academy as they paraded a dozen kids down the sidewalk with caregivers Sandy and Lindsay. They were on their way to a neighbor’s driveway a few doors down where a family invited them to participate in driveway chalk art. Sandy told me they are a nonprofit agency that provides services to enrich, educate and advocate for kids with varying abilities. What a heart warmer!
Alice answered the door and told me I was the first customer today. Later, I asked Cindy how she managed her difficult job. She told me she works for two caregiving agencies and there are not enough caregivers for patients. Her job is exhausting, and she feels drained. “I keep telling her son I need coffee and laundry soap. And I am still waiting for the identity bracelet I requested two months ago…,” she told me.
And then the high price of gas arrived. In a recent study The Journal of the American Medical Association reported that most patients living with dementia at home have at least one unmet medical need related to safety, medication use and other general health needs. Many patients suffer a lack of meaningful activities, physical inactivity and social interaction.
Feelings of burnout are common among caregivers. I asked Cindy what she did to get a break. “I take time when I get a chance," she said. “I like listening to my music and getting some exercise. That helps me unwind,” she replied.
I could spend hours studying the National Center for Health Statistics table of the leading causes of death in the United States from 2015-2020. I noticed the average increase in the number of deaths per year from 2015 to 2019 was 35,552. In 2020 the increase in the number of deaths was 503,976, creating an exponential increase in caring for patients.
AARP reported in 2020 that “millions of Americans are caregivers with 89% being relatives who did not choose the job, it just happened.” The pandemic has ushered in a cascading series of mind-numbing events. Everyone needs reassurance. Caregiving is universal now.
We remain hopeful and take small steps forward in our uncertain and unpredictable world. I hope we do not realize another catastrophe by the time you are reading this. Patience and time bring certainty. Be wise and factor in unexpected outcomes and keep a “Plan B” to increase your chances for success. Temper expectations. Avert your eyes from the unwelcome news and keep your ear to the changing weather. Turn inward to those you love and care for and ask the simple question posed by Elaine Poker-Yount, the director of Care Management for Visiting Angels: How can I help you? She goes on to explain that when the status quo becomes chaos, we need to “learn to step back and move forward with empathy, understanding and respect. We need to help each other. This will give everybody the best chance at success, whether you are experiencing change or helping to navigate it.” Studies show that acts of kindness are linked to increased feelings of wellbeing. When you act to help others, it takes your mind off your own problems.
Former football coach Tom Coughlin said some very touching words in recognition of all caregivers last February as he cared for his wife Judy after she was diagnosed with PSP, or progressive supranuclear palsy, in 2020: “The idea of being a caregiver is a very difficult thing. It is mentally and physically exhausting. Don’t be afraid to say, ‘Can I have a little help?’”
Mike Stoeckmann is a medical project coordinator who has been working in community-based health care for the past 20 years.