I was sitting at the keyboard on a sharply cold night in late November trying to figure out some complicated chords that would have been relatively easy for some eight-year-old, but not for me. I placed my folder of sheet music in my bag and was about to put on my coat when a woman nearby said, “Boy, I sure never thought it would turn out like this.”
I thought she was speaking to a companion, but, no, she was looking directly at me. With curiosity and an element of compassion, I asked her if she had gotten bad news and if there was anything I could do. She thanked me and said, “No, I did not get bad news but he sure did.”
She went on to tell me that her husband was seventy-five, and ten years ago had been a swashbuckling entrepreneur, a corporate gladiator, a deal maker and deal breaker with an international presence.
His company was bought out as part of a global merger and acquisition, and he was thrown on the corporate scrap heap with a nice buyout but with essentially nothing to do. He dabbled in a few nonprofits, sat on a couple of boards, played a lot of golf, but this was not enough. He started to drink a little too much and took more sleeping pills than what was reasonable. And then the curtains started to slowly come down with Alzheimer’s-type dementia.
Initially, his memory loss was a true nuisance of forgetting someone’s name, leaving for the airport without a passport, or forgetting his wallet. His wife was attentive and vigilant and was able to connect the dots so life went pretty well. But now, the news was increasingly alarming as the dementia was dramatically accelerated, and the MRI of the head showed proof.
Over the past year, the wife had become a 24/7 caregiver responsible for the gritty details of maintaining a home but also responsible for umpteen medications, a zillion office visits, consultations, and insurance issues.
In her role as caregiver, she was completely burned out and felt isolated and alone and unappreciated. There is no applause for the caregiver. There is no medal of honor for those quiet souls grinding it out day after day trying to keep the wheels on.
I had spoken on this topic on many occasions to professional and community groups, so I did have some practical advice for this tragic situation. I did not want to sound preachy or doctory, but I suggested the ABCs of caregiver survival:
A stands for athlete. If the caregiver is not fit, she will not be able to take care of her husband’s needs. Every great athlete follows a routine of conscientious sleep, plant-based diet, and physical activity of at least thirty minutes each day.
B stands for boundaries. This means importance of time alone and the gift to say no to relentless expectations. If we continue to give of ourselves and not recognize the need for self-care, our gifts and skills are squandered and can never be brought to the bedside.
C stands for concentration. Multitasking is lethal. If we try to do two things at once, it will take us 50% longer to do the job, and there will be 50% more errors. This means mono tasking, focusing on the main thing, avoiding the erosive distractions of social media and the iPad. Some experts have acknowledged that if we were interrupted, we need to double the time of the interruption for us to get back to baseline.
And a fourth and equally important survival technique is to have an armada of support either through an informal support group through church or through her health organization or just their friends and family. Who will be on the other end of the phone if she needs to call someone at three in the morning?
Edward T. Creagan, MD, FAAHPM, a cancer specialist, is the first Mayo Clinic doctor board certified in hospice and palliative medicine. His new book, Farewell: Vital End-of-Life Questions and Candid Answers, is about navigating those precious last days, at the bedside, and saying farewell with hope, love, and compassion.
In the glorious marble lobby of the soaring, sun-filled Gonda building on the campus of the famous Mayo Clinic in Rochester, Minnesota, sits a concert-quality grand piano. The diminutive figure in a black suit often found playing this magnificent instrument may often be Dr. Edward Creagan. These blog posts are written from his encounters with patients and others who are drawn to his music and compelled to tell their stories. He listens. He plays. And he writes stories about people others don’t take time to get to know.