The plane banked left as it climbed over the Pentagon, following the muddy Potomac River. Out the window I glimpsed the small shelter beside a patch of brown clay on a sea of green in Arlington National Cemetery, where we had buried my mother the day before.
I was returning to Minnesota from my 10th trip through Reagan National Airport in 12 months. Each visit had been both challenging and rewarding as my mother faced her final months of life.
Mom turned 89 in the hospital, one day before her death last June. The experience of being consumed by caring for her and my father had begun gradually for my family years before. It is a journey increasing numbers of us are taking with loved ones as the population ages. The number of Americans older than 65 has tripled since 1960.
Today many of us talk and commiserate and compare notes about our frail, lovable, sometimes cantankerous parents and their issues the way we spoke not long ago about our kids and their latest phases — but without the family-education classes we had to support us with our children.
For me, this most recent phase of life began about the same time my first grandchild was born. As a primary-care physician of 34 years, I had walked with families caring for elders, many of whom had the responsibility of care at great distances. Now that I've had experiences as both a clinician and a son, a few thoughts may be helpful to others facing the tasks and emotional challenges of caring for aging loved ones.
• "Honor your father and mother that it may go well with you on the earth," reads the commandment. My mom lived in the only home she ever owned with my father, and a while back, deterioration in health and function had begun to be reflected in their home. I had to remind myself that the first part of caring for mom was to honor her. She did not view herself as a dependent needing my help.
My mother's history was one of resilience, and her view was that her difficulties were merely additional ones she would overcome. After all, she was a girl from Wausau, Wis., who had hardly ever traveled outside of the Midwest until she moved to Athens, Greece, as a military wife at age 24. She lived "on the economy," not on a U.S. base, and learned to speak Greek. When she was 38 weeks pregnant with her first child (me), she climbed aboard an Air Force C-47 alone, strapped on a parachute and was medevacked across the sparkling Mediterranean to a military hospital in Tripoli, where I was born.
Moving a family of four from Nebraska to Tachikawa, Japan, and back to Langley, Va., were additional demonstrations of her strength.
• "Get a primary-care physician" sounds like self-serving advice coming from a PCP, but it is essential when caring for an elder. My mom had good medical care from a wealth of specialists in Washington, but until the last year she did not have a primary-care doctor. Specialists attended to their body system of interest with great skill, but without connection to what her other doctors were doing.
This contrasts dramatically with the kind of care coordination common in the Twin Cities, where details of a late-night emergency room visit can be accessed the next morning electronically across care systems (with the patient's consent) to help interpret what is going on.
When Dr. "C" became mom's PCP in Washington, he was able to integrate what was happening with various specialists and help her understand her choices. He took time to reflect back what she said to clarify her wishes.
• Share in decisions. Clinicians are taught that determining what is most important for each party is the first step toward finding common ground. What was most important to my mom was staying in her own home. What was most important to her children was safety, preventing a fall or other avoidable injury. Discovering this common ground — staying at home, safely — led to our making changes to her home that she had been unwilling to accept previously.
Furniture that had been in the same place for 35 years was moved to make hallways safer for a walker, and bathroom accommodations were made. Even so, mom's staying at home wasn't always rosy. A home agency aide was hired to stay overnight when rolling over in bed became a chore after a compression fracture of the spine. Despite our interviewing several agencies and individuals and checking references, the aide hired fell asleep and did not awaken when mom needed help.
• Remember that each family member is on his or her own journey and does not necessarily have the same relationship with the elder. My temptation was to ride in on my white steed, the big brother from Minnesota, the doctor with all the great ideas. On one of several occasions when I succumbed to this temptation I decided that for safety and social reasons mom should move to a living situation that provided more support.
One Saturday morning before boarding my plane, I called her and enthusiastically said to be ready to go on a tour of a senior-living facility. The place was beautiful, with independent apartments, help of all kinds available if needed, well-equipped exercise rooms, quiet libraries, and a dining room with gilded mirrors that seemed a ready solution to meal-preparation challenges we were facing.
"It's like living on a cruise ship," one of the residents told mom. I saw my father visibly brighten speaking with several men there. It was clear to me that this would ease the social isolation he was experiencing caring for my mom at home.
A few hours later, I was surprised to learn that a sister was not in favor of my parents' leaving the family home. "I will feel like a failure if they move there," she said. Many years earlier, my mother had taken care of her own mother in the last year of my grandmother's life. My sister was committed to doing the same thing for mom.
Other families make different decisions than we did, and all should have a clear conscience as they examine their values and prioritize needs for healthy meals, care that cannot be readily provided at home, the value of social contact and more. Be prepared for members of your own family to weigh those needs and solutions differently.
Family members also naturally play different roles — some providing financial expertise; others, hands-on care; and still others, emotional support. All these contributions (and more) are needed.
• Have "the conversation" (https://theconversationproject.org/) about the end of life and what your elder wants and does not want when the time comes. Acknowledging that our loved ones are not going to live forever forces us to us face our own mortality, and such conversations are easy to delay. This increases the odds of unwanted medical procedures.
In my experience as a clinician, unresolved conflict among family members makes letting go all the more difficult, especially for those who live at a distance. My sisters were not able to speak to mom about her approaching end of life; they could not imagine a world without her.
Discovering what my mom wanted really required a series of conversations. They began with what she understood about her problems and what she thought might happen in the future. She initially expressed vague notions about not wanting to be in a "home" or live as a "vegetable." Later, she was able to tell stories of people she thought had died well and others who had not. A narrative began to form, and it became clear she did not want to be fed artificially or made dependent on machinery like dialysis or mechanical ventilation.
Her wishes were recorded in a health care directive and "POLST" instruction forms were attached to her refrigerator for paramedics.
• Prepare yourself for the unexpected. "I passed my eye test and got my [Virginia] driver's license renewed today!" mom proudly announced one day. Driving was a cherished privilege, and while she had not been physically able to drive for a year, her license symbolized independence.
For those of us unsure whether driving is safe for our elder, AAA has helpful information, and an occupational therapist can perform objective assessments. After a tangential reference to increased safety options available in newer cars that might extend my 90-year-old father's driving career, a new car appeared in the driveway with all the safety bells and whistles.
• • •
Mom's excellent short-term memory and an encyclopedic memory for names and faces masked mild cognitive difficulty. It became apparent in a decline in problem-solving ability, especially when matching ingredients on hand to an evening meal menu proved difficult. Once we recognized this, written options for menus prepared in advance eased anxieties, although it would have been even easier had prepacked meals we tried proved more palatable.
Problems need to be faced and solved, but life also must be celebrated. My mother loved a good party. Sunday-night gluten-free pancake feasts at Grammie's could spontaneously grow to a gathering of 25 people including five great-grandchildren, with each pitching in to prepare and clean up. Weddings were attended, the last one in Idaho 12 months before her death, even though it required the logistics of an army quartermaster to pull off, including an expensive first-class ticket and a plan for airport transfers.
The burdens of loving and caring for our elders can be weighty, but they are inseparably linked to the joys. My mom was fortunate to have three children and eight grandchildren in D.C. She didn't want to burden any of us, but neither she nor we saw her challenges as an unbearable hardship — a too-common reason for physician-assisted suicide in places like Oregon.
Short-circuiting her natural end was unthinkable. We did things my mom enjoyed, listened to her stories while looking at old family pictures, sang her favorite hymns, prayed together and heard again her certainty of heaven. We of course misjudged crises that were developing and wished we had done some things differently. Caregivers need to find support. My siblings and I sometimes met for dinner and conversation during crises, and I wish we had done that more.
During her final, brief acute illness, up to 14 people held vigil in mom's hospital room. We held each other tightly, alternately crying and laughing uproariously at stories that were shared.
What made it possible for my family to persevere? A commitment to honor my mother, and to celebrate life's journey to the end.
Steve Bergeson is a family physician at the Allina Health Shoreview Clinic. The opinions expressed here are solely his own.
