As a career nomad I have had the joy of experiencing life from coast to coast. Each new job brought me to a new community in which to live and work. For some, the idea of making numerous cross-country moves over the span of five decades would be a frightening proposition. For me, it was the thrill of new adventures, new cities, new friends and new experiences.
But one of the downsides of being in what sometimes felt like perpetual
motion was the separation from family. In all the moves I made to wonderful parts of the country, I never had the opportunity to live and work near my closest relatives. Occasional visits were fine, but nothing takes the place of being close to family members to share happy occasions or to offer help in time of need.
Both of my parents are now gone. When my mother was very ill, I lived 2,000 miles away. Fortunately, my father served as her caregiver until the time of her death. And decades later when my father was seriously ill, his second wife was his caregiver since I was still living far away.
I never had the burden or the privilege to act as a caregiver for my parents. I never learned what it was like to interact with physicians, nurses, hospitals, insurance companies and the myriad other people and places that provided vital health services. It wasn’t that I didn’t care about them, I just never had to care for them.
Both of my parents went through their final illnesses with a spouse at their side while I was on the other side of the country.
Now, I’m suddenly faced with being a long-distance and unintended caregiver for my aunt who has neither a spouse nor any children to care for her. My late father’s sister celebrated her 88th birthday as a COVID-19 patient in an acute care hospital 2,600 miles away. The physical distance that separates us can’t separate the closeness I have felt for her throughout my life.
So, with no background in being a caregiver and no prior experience caring for my parents at the end of their lives, I couldn’t let my lack of knowledge stand in the way of trying to do the best for a person who has cared for so many others during her lifetime. I simply jumped into the deep end of the pool and did old-fashioned on-the-job training.
I spent the majority of my working years as a hospital executive. I learned a great deal about medical lingo and the way in which health care professionals relate to their patients and their patients’ families. I learned how to navigate the medical industrial complex and what physicians, nurses, technicians, hospitals and insurers deal with in the ever-changing dynamics of health care from the perspective of a provider and a payer.
After decades working in hospitals, I thought I knew all I needed to know about how to be an effective family caregiver and health care advocate. I quickly learned that what I knew was barely enough to make me a minimally literate health care consumer and proxy for an elderly relative.
But I am one of the fortunate family caregivers who has the benefit of a life partner who is an expert in the area of aging. Without her abiding support and counsel, I would have been lost.
And I have been doubly blessed to have a cousin who has been a nurse for more than 30 years at one of the nation’s elite medical centers and who shares my love and deep concern for my aunt, her cousin. This cousin lives close to my aunt, but in the era of COVID, a few miles or a few thousand miles don’t make a great difference.
Even with knowledgeable family members working in partnership to ensure that our family member was well cared for while in the hospital for many weeks, in a rehabilitation center for a few more weeks and eventually back home in her assisted living community with the help of non-medical home care aides, it still felt like a full-time job overseeing her care. It is hard to calculate the number of phone calls I’ve had with countless health care workers and with my family members who have been a constant source of advice, counsel and emotional support.
Throughout the months of dealing with this on a daily basis, certain question continued to gnaw at me: What happens when a seriously ill or injured individual doesn’t have one or more family members acting as their caregiver? What happens when a patient’s family members are unprepared, ill-equipped and completely overwhelmed with the prospect of caring for a loved one? What happens when those who care the most are not even sure what questions to ask or how best to advocate on behalf of the person they care so much about?
As I pondered these questions, my first reaction was to feel grateful that I had a modicum of ability to deal with this situation. My second reaction was to think about those who lacked the support system to deal with such a difficult challenge. I feel compassion for both the patients who lacked a family support network as well as family members who struggle dealing with what few people are ever trained to do — be a caregiver for someone they love.
My community is incredibly fortunate to have one of the most remarkable resources in the country that has as part of its mission concern for the elderly who are homebound and their families who find themselves unexpectedly enlisted as caregivers. Duet: Partners in Health and Aging has been devoted to this work for 40 years. I am proud to have served on Duet’s board of directors for the past few years.
According to Duet, “A family caregiver is defined as someone who provides unpaid care for a loved one. Many family members don’t consider such care ‘caregiving’ — they are just doing what comes naturally. Whether the care is provided in town or across the country, it’s a responsibility that can take a physical, mental and emotional toll.”
My work as a family caregiver continues because I believe that COVID is likely to leave my aunt as a COVID long-hauler, in need of attention for a long time to come. I hope I can live up to the task and be a caregiver capable of providing the support that she needs and deserves.
But for those who anticipate playing such a role, or for those who have suddenly been thrust into the role of a family caregiver, it is important to know that there are resources available to help you be the best helper you can be for your loved one.
If you live in Greater Phoenix, consider contacting one of these agencies to seek assistance:
Duet: Partners in Health and Aging: 602-274-5022
Area Agency on Aging: 602-264-2255
Senior Help Line: 602-264-4357
Dial 2-1-1 to reach the Community Information and Referral Service
AARP Arizona State Office: 866-389-5649
If you live in another region or state search for your local area agency on aging or contact the local office of AARP for suggestions on how you can be an effective family caregiver.
Being a caregiver is a noble task that calls on us to show our compassion, love and respect for the dignity and well-being of others. It may be a weighty responsibility but it can also be the greatest labor of love you will ever experience. JN
Stu Turgel is a broadcaster, blogger and nonprofit consultant in Scottsdale. This article was published first on his blog, thephoenixfile.net.