For three years, Lil Banchero’s 86-year-old mother struggled with pain due to advanced arthritis. She tried yoga. Doctors prescribed medications and tried injections. Nothing worked. The pain got worse, and her mother became depressed. 

“Months passed,” said Banchero. “Nobody was paying attention anymore.”

Finally, Banchero accompanied her mother to a doctor’s appointment and insisted, “There’s got to be something else out there we can try.” 

The doctor prescribed another medication, and that—combined with meditation, walking and yoga—finally made the pain manageable.

“My mother is a different person now,” Banchero said. “She went out and got a pedicure today. It’s been life changing.” 

Banchero knew how to advocate for her mother because she’s a nurse and program coordinator for the Institute for Healthy Aging at the Luminis Health Anne Arundel Medical Center in Annapolis, MD. But more and more older adults who are not medical professionals will need to learn that skill, too. That’s because, just as the population of older Americans is ballooning, several factors are conspiring to make getting good medical care even harder.

Older adults often have multiple chronic conditions involving a multitude of specialists. (A third of older adults see at least five different specialty medical providers each year.) The fragmented, siloed nature of the American health care system delegates the task of coordinating that care to primary care physicians (PCPs), who are overworked, pressed for time and in short supply. There’s an even greater dearth of geriatricians, who specialize in caring for older adults. And projections say it’s only going to get worse.

The bottom line: just showing up for appointments and following doctors’ orders doesn’t guarantee good care.

Said Banchero: “You’re the pilot of your own care.”

 Quarterbacking Care

That reality shocked Tina Sadarangani, PhD, an assistant professor at New York University’s Rory Meyers College of Nursing. When her parents developed serious health conditions, she discovered how much responsibility falls on patients and their families. Even though she’s always treated patients, and although both parents are retired physicians, quarterbacking their care has proven exhausting. 

Spurred by her experiences, Sadarangani created CareMobi, an app for coordinating care, and the Enlightened Caregiver, an Instagram with tips for patients and their care partners.

“We may not be able to fix the broken system, but we can figure out how to work within the system,” she said. 

Her advice: make the most of medical visits, which may run only five minutes. Consider recording conversations with the doctor to help remember details. Bring a family member or friend to the appointment.

“Plan your story ahead,” she said. “Lead with your most pressing problem and get the timeline of your symptoms straight with as many specifics as possible. It makes a big difference to your doctor if your cough has been going on for several months instead of two weeks, for example.” ⠀

When describing a symptom, Sadarangani said, tell the doctor how it’s affecting your ability to function. Instead of just saying “My back hurts,” be specific: “I was playing golf five times a week until this back pain started, and now I can’t get out of bed.” 

Keep track of basics, like your numbers if you have high cholesterol, and what direction they’re moving in. 

Specific information helps ensure the doctor doesn’t dismiss your symptoms as “just getting old,” Sadarangani added. 

“If you want the doctors to be proactive and to help you maintain the level of functioning you want, you need to be clear about that,” she said. “You need to say, ‘I want to be back in my golf game. What can you do to help me get there?’”  

If you have questions, write them down in advance and frame them carefully. 

“If you’re not precise with an ask, the physician is probably not going to pay attention,” Banchero said. 

Before leaving a doctor’s office, make sure you are clear on your next steps. If the doctor ordered a test, for example, ask: How and when will you get the results?  Depending on the test results, will you need another test, or to schedule another appointment? If you’ve seen the doctor for a new symptom or acute illness, ask when you should expect improvement, and what new or continued symptoms warrant a call to the doctor’s office or even a trip to the ER. Find out the best way to contact the doctor or a nurse after hours, if the need arises. Assume the ball is always in your court because, in most situations, it is. 

Consider yourself the central repository for your medical records. In theory, after an exam, each specialist sends the records to your primary care physician. Don’t count on that. If you see a specialist, follow up with your PCP’s office to confirm that the record was received and reviewed. Keep your own record of each visit, too.

Banchero encourages patients to educate themselves on some medical basics. For example, if you have high cholesterol, keep track of your numbers and understand what they mean. That way you’ll know whether you’re improving or getting worse and can discuss that with your doctor if needed. 

Many experts noted that patients can ask for an annual Wellness Visit—an extended, 45-minute visit, covered by Medicare, that includes a review of your medical and family history and current prescriptions, as well as advance care planning and a cognitive assessment. That in-depth visit can ensure that your health care plan is personalized. 

Managing Multiple Meds

In her previous job as executive director of a senior living community, Jenni Knutson, CDP, always made sure that residents were prepared for medical emergencies. Any time a resident was taken to the ER, Knutson handed paramedics a list of the person’s medications, insurance information and other documents. 

But that didn’t always work, as Knutson discovered when visiting a resident who’d been taken to the hospital in an ambulance and admitted. Family members were puzzled because the patient hadn’t eaten in days. When Knutson asked the nurse on duty at the hospital to check, they discovered that the patient’s medication record wasn’t updated in the hospital system. No one at the hospital was aware that the patient had been taking a strong anti-psychotic medication daily before she was admitted. As a result, the patient had gone “cold turkey” during the six days she’d been in the hospital, which explained the appetite loss. 

“Likely a doctor in the ER reviewed her medication list, then set it down on a counter, and no one updated the computer system,” said Knutson, who is now a senior life care manager with Olive Branch Seniors based in the Dallas, TX, area. 

Knutson said that many missteps in medical care for older adults relate to medications. About half of adults 65 and older report taking four or more prescription drugs daily. One study showed that one in seven cases of emergency department visits by older adults were medication related—and over three-quarters of them were preventable. Medication-related problems included adverse drug events (side effects) as well as those due to noncompliance—taking too much or too little of the medication, or stopping the drug entirely without medical supervision.

To help avoid these missteps, keep an updated list of all medications, including the name, dosage, date, number of refills and instructions (such as whether to take with or without food). That list should include prescriptions, over-the-counter medications, supplements and herbal remedies. 

Also, know that it’s also up to you to make sure every provider has the most updated list.

As you grow older, medication side effects can become more common or severe. Ask your doctors whether you really need all the drugs you’re taking. 

“Share your medication list with all of your health care providers, especially when you see a new doctor, get a new prescription or have a change in your condition,” said Erin Inman, PharmD, vice president of Corewell Health in Grand Rapids, MI. Ask the doctor to review the list for possible interactions. 

Pharmacists can also serve as an excellent resource between doctor visits, Inman adds. 

“Your pharmacist can answer any questions you may have,” she said. “You can request a review of your complete medication list for potential interactions or duplications. This is what pharmacists are trained to do.” (Call ahead to make sure the pharmacist has time to review the medications or to schedule a time.)

Inman recommends filling all your prescriptions at a single pharmacy, if possible. Anytime a new medication is prescribed, she advised, ask the doctor: “Is this medicine additive or is it replacing something else? How long do I need to take it—for a period of time or is it going to be lifelong?” 

Geriatricians review patients’ medication lists with an eye toward “deprescribing,” because side effects may become more common or severe as patients get older. Don’t hesitate to ask your doctor about this.

“You can ask your providers about de-prescribing, especially if you suspect a medication or medication interaction is causing an adverse symptom or no longer helping,” said Kylie Meyer, PhD, assistant professor at Bolton School of Nursing at Case Western Reserve University in Cleveland, OH. 

Enlisting Care Partners

Many experts advise bringing a care partner—a trusted friend or family member—along on appointments to serve as a second set of eyes and ears. That’s especially important for patients who may have cognitive impairment. Care partners can work with the primary provider to keep the dots connected, said Denise Lucas, PhD, clinical associate professor and chair of advanced practices at Duquesne University’s School of Nursing in Pittsburgh, PA.       

The care partner should also obtain access to the patient’s online medical records. Banchero can log onto her mother’s account for MyChart, the health care system’s patient portal, to check on test results and other developments. (Patients are permitted to share their log-in info if they so choose.) 

A care partner can be especially helpful for older patients who aren’t comfortable asking questions, said Erica Stevens, DO, department chief of primary care at Corewell Health in Grand Rapids, MI.

“[Older adult patients] may feel like asking questions is disrespectful,” she said. “But it’s actually welcomed, from a provider’s lens, because I don’t know what’s happening in your home.” If a patient is forgetting things, or having trouble getting out of a chair, she wants to know, especially if the problem has worsened recently. 

For older adults without family nearby, some community agencies may be able to help with this role. “Contact your local Area Agency on Aging and request help from publicly funded Care Coordination Services,” said Dennis Meyers, PhD, chair for the residential care of older adults at Baylor University’s Garland School of Social Work in Waco, TX. “Organizations such as the Alzheimer’s Association and American Heart Association also offer guidance on how to access care.” 

Becoming Age-Friendly 

Some hospitals and clinics are working to improve care for older adults by becoming certified Age-Friendly Health Systems. That involves adopting practices centered on the “4Ms” of good geriatric care: What Matters, Medication, Mentation and Mobility: 

• “What Matters” involves considering the older adult’s priorities in making treatment decisions—for example, honoring a 90-year-old patient’s desire to forego aggressive cancer treatment. Don’t hesitate to express your wishes to your doctor. 
• “Medication” means considering your medicine and supplement needs and issues, as described earlier in this article.
• “Mentation” issues, such as forgetfulness, can be dismissed by primary care physicians as part of normal aging. Ask for an assessment if you’re experiencing cognitive issues. 
• “Mobility” is another area that primary care physicians might brush aside. If you’re having trouble getting around, ask about the possibility of physical therapy (which may help you regain or maintain physical function) or occupational therapy (which can help you adapt to changes in mobility and optimize functioning). 

As more hospitals adopt age-friendly measures, which Banchero’s hospital helped develop, more older patients will get the care they need in the future. But until they do, the onus falls on older adults and their care partners to be smart, educated and empowered. 

“We really do need to be advocates for ourselves,” she said. “There are so many phenomenal advancements in medicine today. I would never [accept], ‘It’s just because you’re old.’”

 

Even though he’s at retirement age, T.S. Dharmarajan, MD, continues to care for older patients as the clinical director of geriatrics at Montefiore Medical Center in Bronx, NY.  But he’s terrified of the possibility of becoming a patient himself one day.  

“I’m healthy now, but I’m scared to death when I think of the time when I’m going to be admitted to a hospital and taken care of by a hospitalist who has no [geriatric training],” he said. 

Dharmarajan knows he’s unlikely to receive care from a physician with geriatric expertise, because there aren’t enough of them now—and it’s only going to get worse. 

While the population of adults over 65 in the United States has exploded, the number of geriatric specialists has decreased, from 10,270 in 2000 to 7,300 in 2019, according to The Looming Geriatrician Shortage, a 2019 report that Dharmarajan co-authored with Paula Lester, MD, and Ele Weinstein, MD. 

The American Geriatrics Society estimates that about 30,000 geriatricians will be needed to provide high-quality care for the most vulnerable elderly by 2030. Yet about half of all fellowships in geriatrics in the United States continue to go unfilled every year, and there’s no sign the trend will reverse. 

“The need for expertly trained and passionate geriatric physicians is clear,” according to the 2019 report. 

Why Geriatricians Matter

Geriatricians are trained in caring for older patients, particularly those with frailty, cognitive decline (Alzheimer’s or other forms of dementia) or multiple medical issues. 

“The knowledge base that geriatricians have is very different than that of practitioners who are just taking care of older people,” said Dharmarajan, who is also a professor of medicine at Albert Einstein College of Medicine. “There’s a huge difference.” 

One reason why geriatricians are so essential: they understand the ways that physiology changes as people age. Most older people expect to eventually lose bone density and muscle mass and to experience a measure of vision and hearing loss. But other, more subtle changes occur with aging. As the COVID-19 pandemic demonstrated, aging is associated with lowered immune function and greater susceptibility to infection. Kidney function also declines with age. 

“One of the main drawbacks of not having robust geriatric training is the lack of understanding of the aging physiology,” said Diane Kerwin, MD, a geriatrician and Alzheimer’s researcher in Dallas, TX. “And usually in geriatrics, you are managing several chronic disease states as well as the aging body, with the focus on maintenance of function and independence.”

Many older adults live with multiple health issues, like hypertension, diabetes or heart disease. 

“If you have a 40-year-old patient who has pneumonia, you can just give them antibiotics, but if you have an 80-year-old with pneumonia and 10 other conditions, that’s much more complicated,” said Paula Lester, MD, director of the fellowship program in geriatric medicine at NYU Grossman Long Island School of Medicine and chair of the geriatrics task force for the New York chapter of the American College of Physicians.

Managing a chronic condition with an older patient is more complex. For younger patients with diabetes, for example, doctors typically focus on tightly controlling blood sugar levels, because high blood sugar can cause long-term problems like blindness, kidney problems and neuropathy. But that strategy doesn’t necessarily work for older patients, according to Barry Wu, MD, professor of medicine at Yale School of Medicine.

Older people respond to medications differently and sometimes develop different symptoms than those who are younger. 

“With an older person, if you have such tight control, you may put that person at more risk for low blood sugar, and low sugar can kill you,” he said. Plus, the long-term effects of high blood sugar may not take priority for a patient who’s unlikely to live another 10 or 20 years. 

Older patients metabolize medications differently and may experience more severe side effects. They may have difficulty taking medication according to directions. 

“You’ve got to weigh the risks and the benefits of the medicines,” Wu said. 

Without specialized care, older patients may be misdiagnosed, and treatable problems may be overlooked. Kerwin says it’s not uncommon for her to see patients whose cognitive impairment was previously dismissed by medical providers as normal aging and left untreated.

“It’s possible that the cognitive impairment could’ve been due to a thyroid problem, a B12 deficiency, a urinary tract infection or a series of small strokes,” she said. “These are treatable conditions.” 

Patients with undiagnosed Alzheimer’s or dementia may miss the benefits of early interventions, like medication that could have helped slow disease progression. 

Another subtlety of treating older patients: “Older adults have atypical presentations of conditions,” said Ele Weinstein, MD, associate professor of medicine at Albert Einstein College of Medicine. “There are differences in patterns of illness, and differences in conditions that older adults present with.”

For example, a younger patient with a urinary tract infection (UTI) will likely report classic symptoms like burning, pain or frequent urination. An older adult with a UTI might instead exhibit confusion or lethargy. 

Managing Multiple Conditions

Geriatricians follow the “Geriatric 5Ms,” their key focus issues: mind, mobility, medications, multi-complexity, and matters most. 

“Mind” refers to the importance of assessing mental acuity and recognizing conditions like dementia, delirium and depression. “Mobility” relates to fall prevention and optimizing gait and balance. “Medications” includes reducing polypharmacy (multiple medications), de-prescribing, and recognizing harmful side effects of medications. 

“Multi-complexity” involves managing multiple illnesses and conditions, as well as living environments and social concerns. “Matters most” refers to guiding patients’ care based on their values and priorities. 

Many geriatricians consider “de-prescribing” medications to be one of the most valuable functions of geriatricians. Patients with multiple health problems typically see several specialists who each prescribe medications. Geriatricians are trained to spot potential drug interactions—which are more common and more severe with older patients—and to weigh the benefits against the risks of each medication. 

“When you go to a doctor with a complaint, they give you a pill,” said Lester. “But if you go to a geriatrician with a complaint, they may take away a pill. It’s just a very different philosophy.” 

Lester adds that geriatricians are much better at prognostication.

“That’s basically looking at a patient and their lives and their condition and their whole situation and figuring out, ‘Are they going to get better? Are they safe to go back to where they were before? Are they going to recover from this illness? Do they need hospice?’” said Lester. “I do that somehow in my head, quickly and accurately. In general, geriatricians are much, much better at prognosticating. That is so important for the people who want to know what their life expectancy is, what that time will look like, and then they can decide how they want to spend it.”

Why the Shortage

Since the publication of their 2019 report, the co-authors say they have not seen sufficient change to increase the supply of geriatricians. Dharmarajan noted that he created the geriatric medicine fellowship program in 1991 at Our Lady of Mercy Medical Center in the Bronx, currently Montefiore Medical Center (Wakefield Campus), where he also serves as professor of medicine. “In the first 10 to 15 years, there was no problem filling those fellowships, but we have seen a very clear decline in the number of applicants in the last 15 years,” he said. 

Lester said geriatrics has a “PR problem” that discourages medical students from choosing the field. Most students complete their geriatric rotations in hospitals, where patients are typically very ill and unlikely to recover. However, geriatricians themselves report some of the highest levels of social satisfaction among medical specialties, citing the relationships they build with their older adult patients, the more holistic approach of geriatric medicine and even the challenge of handling medically complex cases.

Geriatricians spend more time with each patient. Because virtually all their patients are on Medicare, geriatricians are paid at Medicare rates—generally lower than regular health insurance. As a result, geriatrics ranks as the fourth-lowest-paid medical specialty, only slightly more than pediatrics, medical genetics and family medicine. 

Another factor is the rise in the number of hospitalist positions. Hospitalists are doctors who provide primary care for patients while they’re hospitalized. The term was coined in 1996 when there were a few thousand hospitalists in the United States. Now there are more than 50,000. 

“It’s easy now for a medical student to finish three years of residency and just become a hospitalist with fixed hours and a very attractive salary,” Dharmarajan said. “Why waste one more year for a fellowship for geriatric medicine, and then deal with all the very complex illnesses that older people have and work for less money?” 

Facing the Future 

Some medical schools are looking to help fill the gap by adding geriatric training as part of their medical education. 

“We won’t be able to train enough geriatricians, so the goal is to train other professionals throughout medical school in geriatrics,” said Wu, who directs the introductory and final courses at Yale School of Medicine. 

In the intro course, students take their first medical history on older adult patients, beginning with an assessment of the patient’s values. Students are introduced to basic concepts of geriatrics, including patient priorities care—identifying patients’ goals and values, which ultimately guide their care.

Lester also hopes that hospital administrators will recognize the cost-savings potential of geriatric expertise.  

“What do hospitals worry about?” Lester said. “They don’t like falls. They don’t like readmissions. They don’t like people dying [outside of] hospice. They don’t like pressure ulcers or delirium. Those are all geriatric things. That’s literally what we do.” 

Even after a diagnosis of vascular dementia, Laura Brancato’s father was able to stay in his own home for years. But as his condition worsened, that started to become problematic.

Her father started to wander out of the house. His sleep became disrupted, keeping his wife up at night and leaving her constantly sleep deprived. His medications frequently needed adjustments, which meant Brancato—who has young children and a 70-hour-a-week career as an elder law attorney—had to drive him to the doctor’s office. Part-time caregivers were hard to find and unreliable, especially once the COVID-19 pandemic began.

Finally, Brancato’s family decided to move her father into a memory care community in 2020. He was safer there but unhappy. Visits were limited, because of the pandemic, and her father didn’t understand. 

“He thought we had abandoned him,” she said. 

The decision to move into senior living is one that many older adults and their families will wrestle with, sooner or later. On average, someone turning 65 today has almost a 70 percent chance of needing some type of long term care in their remaining years, and 37 percent will require residential care in an assisted living or skilled nursing facility, according to LongTermCare.gov.  

Determining the best time to make the move often creates conflicts. Siblings may fight over the best course of action. Older adults may resist making a move, even when their adult children feel it’s clearly time.  

“The older person is saying, ‘Why? I’m perfectly fine. I can take care of myself,’” according to Dianne Savastano, a patient advocate and founder of HealthAssist in Manchester, MA. 

Aging in Place

Most older adults want to remain in their own homes as long as possible. Realistically, however, some will reach the point when that’s no longer safe or comfortable. A person living with dementia may wander and get lost, or leave the stove on and start a fire. Mobility issues may pose a high risk for a fall or make it impossible to handle basic daily chores like cooking, cleaning, dressing or bathing.  

When counseling older adults and their families grappling with this question, Kimberly Knight focuses on activities of daily living (ADLs). 

“It’s all about ADLs,” said Knight, director of caregiver-support programs at the Senior Source in Dallas. “Consider whether the older adult is still able to navigate the home and care for themselves safely.” 

She asks questions: Can the person get up out of bed, toilet and dress themselves in the morning? Are they able to stand long enough to prepare meals? Do they remember to take their medications on schedule? 

Knight also urges family members to look for signs the older adult isn’t coping. Are they losing weight? Is there spoiled food in the refrigerator, or no food at all? Are bills and mail piling up? Is the home cluttered? Is the person skipping basic grooming tasks? If a spouse or other older adult is the caregiver, is that person showing signs of fatigue or burnout?

Not all of these signs automatically mean it’s time to make a move, but they all do usually mean that the older adult needs more help. 

Older people without family support need to plan ahead for the care they’ll need someday

For those who want to stay in their own homes, the first strategy is to explore options to make staying there safer and more manageable. A life-alert device, for example, could ensure that an older adult can get help quickly in the event of a fall. A part-time, paid caregiver might be able to help with meals, shopping, getting dressed or other ADLs.  

Another key factor in the timing decision is the availability—or lack of availability—of family support, according to Jenny Munro, a gerontologist. She advises older adults and their families every day on the question of “When is it time?” as response team manager at Home Instead, an in-home caregiving agency.

She sees this with her own father, who’s now 98. He wants to remain in the house where he has lived for more than 60 years. His cognitive condition is still excellent, but he’s frail and weak.

Family support is plentiful: Munro is one of nine adult children. After her mother died a few years ago, all stepped in to handle some aspect of his care. A brother who is a banker, for example, is handling his finances. Four of the siblings live nearby, and used to take turns staying with him, a week at a time. That worked until her father began experiencing incontinence. Now, three, full-time, care professionals provide round-the-clock care, and the siblings visit often.

“It’s very expensive,” Munro said. “Thankfully, he saved and invested and has the ability to pay for that.” 

Family support may not be an option, especially for solo agers and older adults without children or spouses. They must plan to handle their care needs on their own.

Solo agers especially may want to hire a professional to help with caregiving decisions.

Like Munro, Carol Marak pitched in, along with her two sisters, to care for her mother, who had several chronic health issues, and her father, who had Alzheimer’s. The couple lived in a rural area and needed help with rides to the doctor, cooking, cleaning and managing their finances. 

The experience was an eye-opener for Marak, 72, who was divorced, childless and had little savings.  

“It scared the heck out of me,” she said. “It took all three of us to take care of Mom and Dad. Who’s going to do that for me?”  

After her parents passed away, Marak began focusing on improving her health and adjusting her lifestyle. She moved from her suburban home to a high-rise apartment building in Dallas that functions as an informal retirement community. Many of the residents are older and support each other. She can walk to errands or catch a bus. 

She also wrote a book, Solo and Smart: The Roadmap for a Supportive and Secure Future (2022). And she’s making plans for when she’s no longer able to care for herself on her own. 

To do that, Marak urges solo agers to hire a professional who can help weigh caregiving decisions, such as an aging-life-care professional or geriatric care manager. Solo agers may want to undergo a cognitive function evaluation before signs of memory loss occur. The test can serve as a baseline and can be repeated regularly as part of their routine health care, to provide objective information on the older person’s cognitive status in the future. 

“You need to have your team of professionals who are looking out for you and who will take notice if you’re starting to decline,” said Marak. 

An Iterative Process

Don’t be surprised if the decision to make a move turns into a series of decisions stretching over several years, Savastano advises. 

“I call it ‘iterative decision-making,’” she said. “You’re constantly adjusting to the older adult’s level of abilities and what they need help with.” 

She worked for 13 years as an advocate for a client named Rosalie, guiding her through knee replacement surgery and then a move into an independent living apartment in a continuing care retirement community (CCRC).  

Rosalie loved her apartment and made new friends. The move was such a success that, even though the CCRC offered sections for higher levels of care, “Rosalie made it truly clear to both me and her children, over and over again, that she intended to live there through the end of her life,” Savastano said.  

Those who delay moving until they’re in poor health may be turned away by some senior living facilities.

When Rosalie’s cognitive abilities began to decline, the staff wanted to move her into the community’s memory care unit. Savastano negotiated for a way to honor Rosalie’s wishes. 

“We gradually increased the use of private, in-home assistance, ultimately involving 24/7 care in her home, which thankfully she was able to afford,” Savastano said. 

Savastano cautions that while older adults may wish to stay at home as long as possible, later isn’t always better than sooner. An older adult’s condition can decline to the point that their options become limited to skilled nursing or long term care. 

“If you wait too long, you may not have as many choices,” she said. Some assisted living or memory care communities, for example, may accept an older adult with dementia, knowing their condition will decline. Most will make accommodations to allow a longtime resident to stay until the end of life. But the same community likely won’t accept someone in that later stage as a new resident. 

Sooner, Rather than Later

A “sooner, rather than later” strategy worked well for Larry and Marilyn Comstock, both in their 80s.

After visiting eight communities, the Comstocks moved into an independent living apartment in 2018. Even though both were—and still are—healthy, active and cognitively sharp, and even though it meant leaving behind their beloved home and many treasured possessions, they felt it was time. They chose Highland Springs Senior Living in Dallas, which has on-site medical care and offers assisted living, memory care and long term care, should their needs change. 

“It was the hardest decision we’ve ever made,” Marilyn Comstock said. “But we didn’t want our children to have the burden of finding someplace for us to move. We wanted to make the decision ourselves.” 

A few months later, the couple felt affirmed in their decision when Marilyn fell and broke her hip. Thanks to the community’s alert system, she was able to get help in minutes. Marilyn recovered, and today they’re both thriving, serving on resident committees and socializing with the many new friends they’ve made.

“We’re glad we moved when we did, because we still have the ability to enjoy the facilities and the people here,” said Marilyn Comstock. 

When the Older Adult Resists

The decision to move into senior living becomes more complicated when family members think it’s time for a move—but the older adult is unwilling. If cognitive decline is present, family members may question whether the older adult is capable of making the right decision. 

“It’s a tricky situation when the older adult is resistant to a move,” said Hannah De George, elder advocate at St. John’s Senior Services in Rochester, NY.  

De George recently sat in on a family meeting with some close friends. The adult children all agreed it was time for their parents to move into assisted living; the parents were unwilling. 

“They felt ganged up on,” said De George. “No one wants to be told, ‘You can’t live in your own home anymore.’” 

Family members can’t force an older adult to move, unless the person has been declared unable to make their own decisions and placed under guardianship by a court order. But that doesn’t mean families should immediately accept “no” as the answer if it’s clear the older adult needs more help. 

“When it’s safety versus autonomy, you have to err on the side of safety,” Knight said. 

Savastano sometimes coaches adult children on different strategies for making their case with a parent resisting a move.

“But in reality, sometimes you end up waiting until a crisis occurs,” she said. 

Family Conflict

The decision to move an older adult into senior living often sparks conflicts among the adult children. 

“This is an issue that can break up families and cause siblings to stop talking to each other for years,” said Knight. 

An adult child living out of state might think the parent is fine living alone at home, whereas a nearby sibling, who visits every day, may be convinced that’s not an option. 

One adult child may want to move the parent sooner, rather than later, and sell the aging parent’s home or dip into their nest egg to provide the best available care. A sibling who’s counting on inheriting that money may disagree. Feelings of guilt, sibling rivalry or other emotional baggage add to the morass. 

Older adults can help ward off conflicts by communicating their wishes in advance, before a crisis hits, and having the legal documentation in place for a trusted person to handle the financial aspects of paying for senior living, should they become unable to do so. 

If it’s too late for that option, experts advise bringing in a third party—a geriatric care manager or physician, for example—who can weigh in with a neutral opinion on the need for residential care.

A Good Decision

Laura Brancato’s father was initially unhappy after moving into memory care. But the regularity of the community’s daily schedule—important for people with dementia—made him feel comfortable. Medical staff on site adjusted his medications quickly when needed, avoiding the need for frequent trips to the doctor. Soon, her father embraced the place as home.

He stayed there until his death in December 2023. Looking back, Brancato’s family feels they made the right move at the right time. 

“He forgot he had ever lived anywhere else,” Brancato said. “Instead of bringing him home for celebrations, we started bringing the family to him. He really was thriving in that environment.” 

Jane’s adult children worried she was sinking into dementia. Her behavior had changed. She wasn’t taking care of her physical appearance. She was forgetful and missing appointments. Maybe it was time, family members wondered, to move her into assisted living. 

Then they discovered the real problem: at the age of 89, Jane was an alcoholic. 

She’d struggled with alcoholism earlier in life but had been sober since age 70. She had taken sobriety seriously, attending Alcoholics Anonymous meetings and sponsoring others who struggled. But after a series of setbacks—her husband of 57 years died, she had to stop driving, and worsening arthritis meant she couldn’t swim anymore—Jane relapsed. 

“I think she was lonely, and felt a lot of loss, and thought, ‘I haven’t drank in 20 years; maybe I can just have a glass of wine,’” said Diana Santiago, MSW, clinical supervisor of the Older Adult Program at Caron Treatment Centers, where Jane eventually underwent treatment. “After a couple of months, she was right back where she started.” 

Jane’s story isn’t uncommon. Substance addiction is on the rise among older adults. 

“Nearly one million adults 65 and up in the United States are living with a substance abuse disorder,” said Lisa Stern, LCSW, assistant vice president, Senior & Adult Services at Family & Children’s Association (FCA), a human services agency on Long Island, NY. From 2002 to 2021, the rate of overdose deaths, accidental or intentional, quadrupled among older adults, according to a research letter published in the March 2023 JAMA Psychiatry. 

Alcohol and prescription painkillers top the list of substances most commonly abused by people 60 and up. Most older people admitted to treatment facilities are addicted to alcohol. Approximately 20 percent of all adults ages 60 to 64, and around 11 percent over age 65, report they are currently binge drinking, according to the National Institute on Alcohol Abuse and Alcoholism.

In later life, people are more likely to use alcohol or drugs to relieve pain than to get high. 

Opioid abuse is rising among older people too. While the US population of adults 55 and older rose by about 6 percent between 2013-2015, the proportion of people in that age group seeking treatment for opioid use disorder increased nearly 54 percent. The proportion of older adults using heroin more than doubled between 2013-2015 (in part due to those who switched to heroin—an illicit opioid—after misusing prescription opioids). One study estimated that the prevalence of prescription drug abuse among older adults may be as high as 11 percent.

Marijuana use is also on the rise among older people in the United States. However, experts suspect that’s due to Boomers, the first generation to widely accept marijuana use, reaching older age. Admission to treatment facilities for marijuana alone is rare, although it can often be part of the mix of drugs and/or alcohol that led to addiction.

Older addicts tend to follow different patterns than those who are younger. They include “hardy survivors”—people like Jane, who struggled with addiction for years off and on or continuously. Others first become addicts in their later years. Use of illicit drugs, like cocaine or meth, declines after young adulthood. But common challenges in later life—isolation, depression and anxiety, financial worries, family conflict, the loss of a spouse or other loved ones, physical or mental decline, adapting to retirement—can turn into triggers for abuse. 

“Older adults are less likely to use drugs or alcohol to get high,” said Jeremy Klemanski, MBA, CEO of Gateway Foundation, one of the nation’s largest addiction treatment organizations. “Instead, they tend to use these substances to reduce pain or handle emotional difficulties.” 

Many older adults experience chronic pain, anxiety or insomnia, all of which may be treated with highly addictive medications like opioids or benzodiazepines (“benzos”), like alprazolam (Xanax), diazepam (Valium) and lorazepam (Ativan.) Older people may be even more prone to abuse these drugs than their younger counterparts. Plus, many older adults must manage multiple health conditions with an assortment of medications prescribed by several specialists, usually without careful coordination, making misuse or overuse more likely. 

“These prescriptions are often not monitored closely, as seniors who cannot get out easily do not follow up regularly with their physicians,” said Stern. “Doctors should be making patients aware of drugs that can be highly addictive, but often they don’t have these conversations. The older adult may be taking the medication incorrectly, or taking too much, but not considering it abusive.” 

Physiological changes that occur with aging can make substance use riskier and misuse more deadly. The ability to metabolize drugs or alcohol declines with age. Someone who could have a beer or two in their 30s with no consequences, for example, is more likely to become impaired in their 60s or 70s. 

Addiction Can Be Easily Missed

Substance abuse is often overlooked or misdiagnosed in older adults. Many of the symptoms of abuse—forgetfulness, drowsiness, confusion, mood swings or shaky hands—are easily dismissed as signs of aging. Even when addiction is recognized, family members are often prone to minimize it.

“People may think the older adult isn’t working or driving, so what’s the harm?” said Klemanski. “The harm is that the substance is harmful physically, and addiction is often a sign of loneliness and lack of connectedness. Both can lead to premature death.” 

Santiago cited a patient in his early 60s who’d been prescribed Aricept for dementia. 

“His medical records indicated that he had Alzheimer’s,” she said. “When he came in for treatment, he was confused and his memory was bad.” 

As it turned out, the patient had been taking a variety of stimulants, opioids and benzodiazepines, along with alcohol. After four weeks without the drugs and alcohol, the man scored within normal range in a follow-up cognitive screening. 

That scenario is not uncommon, Santiago added.

“Once we’re able to clear the substances away, we’re able to see what’s really going on, and nine times out of 10, those older adult patients have their cognition improved significantly,” she said. 

Confronting Trauma 

The telltale sign that Tim, 68, had a problem was his credit card statements. Family members discovered he was “drunk buying” guitars online, ultimately spending more than $100,000, which he couldn’t afford. His daughter referred him to FCA Long Island for treatment. 

In counseling, Tim shared how his mother had walked out on his family when he was 14 and was never heard from again. For the first time, he realized that trauma had affected his relationships for more than 50 years. 

Unresolved trauma is a common factor contributing to addiction among older adults, according to Chris Walter, a certified recovery peer advocate at FCA. 

“Often the Boomers don’t want to talk about these things,” he said. “That wasn’t a generation that went to therapy or talked about their problems. If we can get that [childhood trauma] out, it does help them to free up demons.”  

People who have had a successful life can become isolated as they age, with time on their hands, and fill that vacuum with alcohol or drugs. 

Older adulthood, of course, can also bring new trauma and loss. Friends and family members die. A move from a longtime home to assisted living can feel like a death. Retirement, or an unplanned job loss, may leave an older adult at loose ends. 

That’s what happened with Dan, 63, when he lost his job 17 years ago. He spiraled from a social drinker into an alcoholic. 

“When you go from being a workaholic, and your professional career to a large extent defines you, to being undecided about your future and with whom you fit in, it leads to self-questioning, and for some of us, self-medicating,” he said.  

“It’s very typical to have an older adult [with addiction] who has had a successful life,” said Klemanski. “They’ve raised children. They’ve had a career or contributed something positive to their community. But as they got older, some of the things that helped define life are pulled away from them. They may have more time on their hands or feel isolated. A vacuum occurs, and that’s filled with alcohol or drugs.”  

Getting Treatment

Drinking got Francisco, 68, banned from the local senior center. He’d shown up intoxicated, behaved aggressively and fell in the parking lot. He was referred for treatment at FCA Long Island. Counselors discovered that he was not only drinking a pint of vodka a day but also taking clonazepam (Klonopin) prescribed by his doctor for anxiety. 

In treatment, counselors helped Francisco to better manage his drinking and to address a root cause of the problem: isolation. His case manager set up a meal delivery service, so he’d eat more nutritious meals more regularly, and provided him with a tablet computer and Amazon Echo device, along with lessons on how to use both. 

“He was able to learn how to access YouTube and the internet, which allowed him to enjoy his passions of cars and music in a new way and socialize virtually to reduce his isolation,” said Christiana Mangiapane, LMSW, director of senior mental health services at FCA Long Island. “As a result, he had something to look forward to every day besides a drink.” 

Francisco’s treatment seems to be helping. But as the numbers of older adults struggling with addiction increase, many worry that treatment facilities and programs can’t keep up. Researchers for the JAMA Psychiatry report on overdoses urged policy makers to pursue proposals applying mental health parity rules within Medicare, so that older adults will have better mental health and substance-use disorder coverage and more options. Medicare has covered opioid treatment programs such as methadone clinics since 2020 and will cover a broader range of outpatient treatments beginning in January 2024. However, it does not cover residential treatment.

When older people who are addicted get treatment, they have a better chance of recovering than people who are younger. 

Models of care for treating substance abuse in older people are still evolving. Inpatient treatment typically begins with detox—a period of medical observation while the patient withdraws from the substance, sometimes with the aid of medication. Because older adults tend to metabolize drugs more slowly, most need longer periods of detox. 

Other treatment approaches might include individual counseling, cognitive behavioral therapy, support groups, medication and building connections with other people. Ideally, treatment is tailored to individual needs. Older adults with other medical or mental health issues must have those managed while in residential treatment. Support groups with peers, rather than with people in their 20s and 30s, are more effective. 

“A 74-year-old man who’s retired and whose wife just died isn’t going to relate to a bunch of 30-year-olds with small children and jobs, whose struggles might relate more to drinking too much when they’re with friends,” said Santiago. 

On the plus side, recovery rates tend to be higher among older adults who seek treatment compared to younger adults, according to Klemanski. 

“Their positive life experiences help them focus on the benefits of rehab, which can make them more disciplined in their recovery,” he said.   

Finding Sobriety

Still, the first hurdle is motivating the older adult to seek help. For Dan, that motivation came in the form of a health scare. His drinking finally led to liver disease; doctors told him he’d need a transplant or he’d die within three months.  

“Treatment for me was literally a life-or-death decision,” he said. 

Dan enrolled in a program at Gateway and cobbled together his own recovery strategy, combining the support of friends and family with daily prayer and attending Mass four times a week at his church. He’s been sober for more than a year now. To his doctor’s surprise, his liver disease seems to be in remission. 

For him, the AA principle of “one day at a time” was his key coping strategy.

“Anyone who has [quit drinking] knows it’s more like 10 or 20 minutes at a time,” he said. “Everyone has to develop the tricks, skills and tools that work for them.”

For Jane, an intervention staged by her adult children spurred her to travel from Florida to Wernersville, PA, to undergo residential treatment at Caron Treatment Centers. By age 90, Jane was once again sober. A follow-up cognitive screening showed that Jane didn’t have dementia after all.  

“Her memory came back, and she was able to live independently again,” said Santiago. “Even though she may only have a few years left on this earth, she’s enjoying a better quality of life during those years.”

This is part 2 of a series about caregiving from a distance. Read part 1 here.

Fern, 92, called her daughter in a panic. She couldn’t turn off her television because she couldn’t find the remote. Due to Fern’s hearing loss, the volume was very high. Fern was afraid the blaring TV would keep her and her neighbors up all night.

Her daughter, Monica, couldn’t help. She was in Michigan; Fern lives alone in Sarasota, FL. 

Fern’s situation wasn’t life threatening. But it’s an example of how even a minor issue can become a crisis when an older loved one lives far away. For the millions of Americans in that situation, it’s a major source of stress. In fact, research suggests that long-distance caregiving is even more stressful than face-to-face caregiving. 

Unlike those caring for an older adult nearby, long-distance caregivers often face situations that can’t just be handled as they arise, whether it’s a missing TV remote or a serious medical crisis like a stroke or an injury due to a fall. There are no easy fixes. But experts advise that thinking ahead, and assembling a support team, can help families navigate long-distance caregiving more effectively. Here are some tips. 

Divide and Conquer 

Start by gathering family members for a conference, virtually or in-person, advises Maria Hood, a social worker and director of admissions at United Hebrew, a senior care community in the New York metropolitan area.  

“Develop a strategy to divide and conquer,” Hood says. Make a plan to rotate visits and regular phone calls. Clarify roles so no one person feels overburdened. Those who can’t visit in person might tackle other tasks: a family member who is an accountant can help manage financial issues; another who’s a medical professional can establish lines of communication with the older adult’s physician. 

As much as possible, involve the older adult in the conversation, and initiate it before a medical crisis or other “point of vulnerability” occurs, adds Barry Wu, MD, professor of medicine (geriatrics) at Yale School of Medicine.  

“Understand what your [older adult] family member’s wishes are,” Wu says. “If they don’t want aggressive treatment in the event of a medical emergency, the family should know that. If their heart stops, or they stop breathing, do they want to be hospitalized? Do they want a feeding tube? You need to know what their wishes are.” 

Other questions to ask might include:  

• What kind of support would be helpful now? That might include transportation to doctor visits or outings, help with meals, errands or housekeeping. 
• Could alterations in the home make life easier and safer? For example, switching from an upstairs bedroom to a downstairs bedroom or installing a ramp leading down from the front porch could prevent future accidents or make daily life easier.
• What about anticipated future needs? If an illness or loss in mobility makes it difficult or impossible to live alone, what would the older adult want to do? Move into assisted living? Move in with a family member? Stay at home, with in-home support, as long as possible? 

Remember to keep the older adult’s wishes paramount, says Teri Dreher, an RN and patient advocate who assists older adults and their families. 

“A sense of dignity, autonomy and agency over one’s own life is even more important as we age,” she says. “Nobody likes their children to talk to them like they’re children.” 

Dreher says older adults can become stubborn or unwilling to share honestly about their struggles. Some may resist discussing the issue or insist, “Don’t ever put me in a home.” In that case, a visit to an assisted living community might help reassure them. 

“I worked with a couple in their late 70s that stayed in their house, even though they couldn’t take care of it, until the house was finally condemned,” Dreher says. “Once they moved into a senior living community, they saw how great the food was and changed their minds immediately.”

Start the money conversation as part of these family talks. How is a loved one paying for daily expenses now? How might they pay for additional care if it’s needed? These questions are important for any caregiver, but especially when family members aren’t close enough to quickly access financial records. Needs can change suddenly; an older adult could become incapacitated temporarily or permanently. 

Explore Resources 

Many agencies and local governments offer services to assist older adults—these can be lifesavers when family members can’t be present. However, it’s not always easy to find out about these services. For example, some local charities, city governments or agencies offer wellness checks—regularly scheduled phone calls to check in with an older adult, with follow-up calls and/or visits if they don’t respond. To determine if such a service is available in the older adult’s community, try searching online using the zip code or town (such as, “older adult welfare check 75024”). Or check the search tool of Shepherd’s Centers of America, which provides welfare checks through more than 50 affiliates around the United States. 

Hood suggests contacting a hospital in the older adult’s area and speaking with staff in the social work department. Similarly, the marketing staff at a senior living community near the older adult’s home will likely know what’s available locally.

Create a directory with contact information, including the older adult’s physicians, local fire, police and EMTs, and non-emergency numbers, like those of the apartment security staff or community director where the older adult lives, and names and numbers of neighbors, friends and family members. Add a list of medications and a list of locations of key documents, such as insurance policies and the person’s will. Share copies with family members and post a copy on the older adult’s refrigerator or another prominent spot. 

Enlist Technology

A big source of stress for many long-distance caregivers: worry over the older adult’s safety. Unfortunately, it’s not uncommon for older adults, especially those 90 and older, to fall and end up on the floor for hours before someone comes to help. If the older adult is amenable, consider a medical alert pendant and/or installing an in-home monitoring system. Most require some type of subscription or monthly connection fee that is not covered by insurance or Medicare.  

These systems are typically either “active,” where the user presses a button on a home unit, wearable device or wall to call for help, or “passive,” transmitting data from the user to a trusted care partner without requiring any action on the older adult’s part should they fall or become unresponsive. For example, the Apple Watch offers a passive fall detection function that can be set up to call 911 automatically if the wearer falls. (However, this technology isn’t yet 100 percent reliable and automatic updates to the watch’s software may disable the function without alerting the user.) 

Make the Most of Visits 

Many older adult living communities see an uptick in inquiries right after the holidays, when family members visit and notice signs that their loved one isn’t coping well. Visits are a good time to observe. Look for piles of dirty dishes or unwashed laundry; unopened mail, overdue notices or other signs that paperwork isn’t getting handled; rotten food in the fridge—or no fresh food at all; scorch marks on pans or countertops, possibly signs of inattention to cooking tasks. 

Visits also present opportunities to set up local lines of communication. Accompany the older adult on a doctor visit and ask to be added to the list of emergency contacts. Inquire about joining future telehealth visits, with the older-adult patient’s permission, as a way of tracking health conditions.

Keep in mind, after the visit, that an older person’s health, mobility or cognitive status can change quickly. Be ready to pivot. 

Finally, use a visit to enlist “boots on the ground.” Go to home care agencies, visiting nurse associations, transportation services and other local support services to learn what they offer. Exchange contact information with the older adult’s friends and neighbors and encourage them to call if anything raises concerns, like unusual behavior or if something seems out of place (a door left open or lights on overnight).

The key to long-distance caregiving: find local people who can provide help when your loved one needs it.

If finances allow, consider a consultation with a geriatric care manager in the older adult’s area. Also called “aging life care managers,” these professionals are usually licensed nurses or social workers experienced in the care of older people. They can provide a neutral assessment of the older adult’s situation and advise on options available locally. Generally, they serve clients and families whose incomes are too high to qualify for publicly financed services like Medicaid. Care managers can also offer references to reputable home-care agencies or professional caregivers in the area. Find a care manager in the older adult’s community by using the Aging Life Care Association’s expert search tool or the Eldercare Locator, a public service of the US Administration on Aging.

If the older adult has complex medical issues, consider hiring a local patient advocate who can step in should an emergency arise. Once a relationship is established, the patient advocate can accompany the older adult to the ER and serve as a point of contact until an out-of-town family member arrives. 

Unfortunately, these services are not inexpensive. Labor costs have increased considerably in recent years. In-home care now averages about $26 an hour for homemaker services (cleaning, cooking, etc.) and $27 an hour for a home health aide, according to Genworth’s Cost of Care Survey. Some companies’ employee assistance programs (EAP) assist employees in caring for older family members, with help finding caregiving services and even help covering the costs. 

Some Medicare Advantage plans also provide coverage for personal care assistance, non-medical transportation and in-home meal delivery through a private provider or services like Papa.com. Papa is a platform that connects older adults with Papa Pals, vetted local people available to provide companionship or to assist with cooking, cleaning, transportation and laundry. 

A Papa Pal came to the rescue when Fern couldn’t find her remote. Connor Carroll has been visiting 92-year-old Fern regularly, helping her with light housekeeping, running errands and assisting with other daily needs. After each visit, he calls Fern’s daughter, Monica, to fill her in on how Fern is doing. 

“We’ve built a rapport,” Carroll says. “It’s a comfortable relationship. Fern calls me ‘the son she never had.’ Monica tells me it’s nice to have me as her eyes and ears in the area.”

Hood says that’s a key to long-distance caregiving: connecting with professionals and others in the local area who can step in to help when needed. 

“When it comes to caring for an older adult,” she says, “it really does take a village.” 

This is part 1 of a series about caregiving from a distance. Read part 2 here.

A few years before he passed away, Maria Hood noticed that her father wasn’t shaving or showering regularly, which was unusual, because the retired military man had always been impeccably groomed. 

“He wasn’t getting into the shower because he was afraid of falling,” she said. “And his home, normally spotless, was getting messier. The dust bunnies were starting to have babies.” 

It was clear he needed help. But her father lived in Florida, and Hood was in New York.

Hood’s dilemma is a reality for millions of Americans: providing eldercare from afar. According to a 2012 Journal of Gerontological Social Work report, nearly one-third of informal caregiving occurs from a distance. 

Studies estimate that four to seven million people in the United States are long-distance caregivers, and those numbers are expected to rise as longevity increases and birth rates decline. Mobility factors in too. Adult children move away from their parents to pursue careers; parents migrate to warmer climates when they retire. When the older adult begins to experience medical issues, or mobility or cognitive decline, relocating isn’t always possible for either party. 

While the physical and emotional toll of caregiving is well documented, less has been documented about how distance plays a role. What is clear: “Geographic separation can exacerbate care-related stressors,” according to the 2012 report. 

“When you live far away, you don’t know what’s going on,” said Hood, a social worker and director of admissions at United Hebrew, a senior care community in the New York metropolitan area. “You are not the person with eyes on the ground.” 

Long-distance caregivers don’t handle round-the-clock physical care, but many experience significant emotional and psychological distress. They may feel even more distressed than local caregivers, as researchers Joan Monin, PhD, and Richard Schulz, PhD, were surprised to find in a 2009 study.

Distance can make problems seem worse than they actually are. 

“Caregivers who lived farther away, who were the siblings of the primary caregivers, often were more distressed than the caregivers providing the daily support,” said Monin, associate professor at Yale School of Public Health. 

Similarly, a 2004 study found that long-distance caregivers were more likely to report emotional distress than caregivers either residing with their care recipients or less than one hour away.

Stress often stems from the perception that a loved one is suffering, whether it’s physical pain, loneliness and isolation, or confusion due to dementia. Distance tends to amplify that perception. 

“When you’re not nearby, you may be thinking the situation is bad all the time,” Monin said. “There’s no way to know if things are actually fine if you’re not there. The psychological distress is the ruminating, the feeling that you need to stay vigilant.” 

In working with older adults with dementia and their children, Teri Dreher often hears concerns about safety—and feelings of helplessness.  

“I call it the fear of unknowing,” said Dreher, a registered nurse and patient advocate who assists older adults and their families. “It’s not understanding what’s going on and being so far away, you can’t do anything except worry.” 

Diana Cannon, a companion caregiver for older adults in the Dallas area, serves as “another set of eyes” for families who live out of town. Clients hire her to visit their loved ones in senior living communities, sometimes even in high-end facilities that purport to provide round-the-clock care. 

If you hire a caregiver locally, she can report in regularly and even send smartphone videos to reassure you. 

“That’s a big source of stress—making sure family members are getting adequate care,” she said. Communities may boast posh facilities and lavish amenities, she said, but don’t always offer consistent care, which usually boils down to the staff person on duty, who’s typically working for low pay. 

“You don’t know what’s going on, especially if the person has dementia,” Cannon said. “I’m there to make sure they’re not lonely, that they get turned over regularly [if bedridden], that someone answers when they hit the call button, that they’re being listened to and their medications are being dispensed correctly.”

One of her clients called Cannon an “extra daughter.” The client lives in Houston; her mother lived in a senior living community in Dallas until her death at age 96 in 2018. Because her mother had severe hearing loss, talking over the phone was almost impossible. 

“I’d have to scream the whole time,” the daughter said. She hired Cannon to visit and call afterward with updates. Sometimes Cannon even sent short iPhone videos showing how her mom was doing. 

Even with the means to pay for extra help, the client said, caregiving from a distance was stressful for her and her sister, who also lives hours away. 

“When you’re there with your loved one, you wish you were doing what needed to be done at home,” she said. “When you’re at home, you wish you could be there. Diane was our ‘boots on the ground.’ She helped reassure us that Mom was getting good care.” 

Strained Relationships 

Family dynamics often complicate the long-distance caregiving situation.

“Distance can invoke a lot of feelings of sadness, guilt and shame,” said Vanessa Sommer, lead family therapist for signature programming at Caron Treatment Centers in Pennsylvania. “The adult child feels guilt for not being able to be an immediate support source. The caregiver who lives far away may feel a sense of rejection if they offer something as support or help, and it’s refused. The parent may feel abandoned. Or they don’t want to be a burden to their kids or to be seen as less than capable.”

The family’s relationship history plays a role too. “Caregiving crises can bring up a lot of old resentments,” Sommer said. 

When one adult child lives close to the older adult—and the other lives far away—that can lead to conflicting perceptions of how the older adult is faring. 

“The adult child who is closer may have more daily engagement and involvement with the older adult, and they see the changes over a period of time,” Sommer said. “Whereas the distanced child who has only intermittent contact may not necessarily see the physical changes, and that can lead to disagreements.” 

It’s not uncommon for siblings to argue over caregiving decisions, especially when medical crises arise, according to Marilyn Gugliucci, professor and director of geriatrics research at the University of New England. 

“Just as there are helicopter parents, there are helicopter kids—adult children who are too controlling because they fear losing the parent,” she said. “The older adult may have said, ‘I don’t want to go through heroic measures, I’ve had my life, let me go when the time comes.’ But one of the adult children might feel the need to control their lives to ensure they live longer.” As much as possible, the older adult’s wishes should dictate how to proceed. 

It can be difficult to find out from a distance about local resources available for caregivers. 

The stress of caregiving often has ripple effects on the relationships with the caregiver’s spouse and children. Sommer, who works with families of older adults with substance abuse disorder, says a stressful caregiving situation usually affects the entire family. 

Cognitive loss or personality changes due to dementia can make communication even more problematic. Plus, older adults are often reluctant to admit that they’re having difficulty. 

That’s been a challenge for Hood, who is also caring for her in-laws, who live in Tucson. 

“So much depends on the prior relationship between the adult child and elderly parent,” said Hood. “My mother-in-law is the most amazing, sweet woman. But is she at her best dealing with a husband in poor health? Not always.” 

Family members may get frustrated when an older adult is less than forthcoming, or even dishonest, about their situation. Monin encourages empathy. 

“Imagine someone doubting your ability to care for yourself,” she said. “That can be super threatening, even when the parents and children have a good relationship.” 

“All you can do is give each other a lot of grace,” said Hood. “Try to put yourself in the person’s shoes. Most older people are fiercely independent. They don’t want to burden their children. They may dread moving into a senior living community or having someone coming into their household. It’s easier to think, ‘I’m OK.’” 

Searching for Solutions

Tracking down assistance in another city can also pose challenges. Some communities offer services like daily telephone calls or other welfare checks for older adults. Finding out about those services, however, isn’t easy for those who live far away. Monin thinks policy makers need to assist long-distance caregivers in finding and connecting with resources from afar. She’d like to see a searchable, technology platform that would allow caregivers to find reputable resources in the care recipient’s local area, such as senior community centers, long-term-care centers, hospitals, physicians and other networks of supportive communities.  

In the meantime, to keep stress as manageable as possible, experts advise thinking ahead. Anticipate problems, know the older adult’s wishes in the event of an emergency and have a plan. 

“It’s all about prevention,” said Barry Wu, MD, professor of medicine (geriatrics) at Yale School of Medicine. “If your loved one falls, for example, you don’t want to be scrambling at the last minute.” 

Wu is in Connecticut; his 90-year-old mother lives in Pittsburgh. He relies on technology to help bridge the distance. 

“Her mobility has steadily declined over the last few years, so I set up cameras in her room, with her permission,” he said. He can look in on his mother any time from his smartphone. In addition, he calls her once a day, at a specific time, to make sure she’s OK. He assembled a list of local contacts—his mother’s physicians, the security person in her apartment building, neighbors and friends—which he posted on her refrigerator and saved in his phone. When problems crop up, he can call on his brother, who lives in the Pittsburgh area, to step in. 

Maria Hood began to travel to Florida more often once her father’s housekeeping and hygiene started to lapse. She hired a housekeeper to tackle some of the household chores, which allowed her father to stay in his home a little longer. Eventually, he moved into an independent living senior community, and then, after an injury, into skilled nursing, where he spent the rest of his days. 

In response to her experiences with her father and her in-laws, Hood and her husband sat down with their son and daughter and expressed their wishes for how they’d like to be cared for when the time comes. She draws on her own experience for her job at United Hebrew as she advises families navigating caregiving from a distance.

“The first thing I tell them is, ‘You are not alone,’” she said. “There are a lot of people in the same boat.” 

When Bob Evans lost his job in 2009, he began to consider what was next. He’d spent more than 30 years in the horticulture industry, mostly in sales and customer service positions in landscaping and lawn care. 

His wife reminded him that, in his 20s, Evans had wanted to become a nurse but set the dream aside to support the family. 

“It’s too late now,” he replied.

“I don’t think so,” she said. 

So Evans went back to school—in his mid-50s, the oldest person in his class. He earned a nursing degree and got a job as a registered nurse in a hospital. Just as he’d imagined in his 20s, he loved the work. 

People can expect later-in-life pivots, like Evans’ new career, to become more and more common as we live longer, according to the Stanford Center on Longevity. Human life expectancies doubled between 1900 and 2000. Living to age 100 will become commonplace by the middle of the 21st century. 

As more people live to 100, they may alternate time spent on work and career with periods devoted to family or caregiving.

“The 100-year life is here,” according to the Center’s report, The New Map of Life. “We’re not ready.”

Most people still expect life and career to follow the timeline shaped by a 60- or 70-year lifespan, according to the report, viewing the “extra” 20 or 30 years afforded by increased longevity as an extension of retirement and older age. In this model, college and graduate school, childrearing and prime earning years are crammed into the 20s, 30s and 40s. 

That needs to change, according to the report. This unparalleled demographic shift “calls for equally momentous and creative changes in the ways we lead these longer lives.” 

As more people live to 100, the report predicts, life trajectories will become more fluid and more flexible, and multiple transitions over the course of life will be viewed as “a feature, not a bug.” People will shift gears routinely, to new phases of work and career, possibly alternating with periods devoted to lifelong learning or family and caregiving responsibilities. 

Adapting to Change

“As people live longer, they’re realizing that retirement is not a destination, it’s a transition and a time of new beginnings,” said Dorian Mintzer, a retirement coach and coauthor of The Couple’s Retirement Puzzle: 10 Must-Have Conversations for Creating an Amazing New Life Together (2014). “It can be a time to rewire, rejuvenate and revolutionize.” 

Longer lives may lead more people to follow unconventional paths, like that of Jim and Lynda McDevitt of Plano, TX. Now in their early 70s, they’ve pivoted twice in the last two decades. After retiring in the early 2000s from long careers with the Internal Revenue Service, the couple opened a neighborhood wine shop called Corner Wines—and loved it. 

“We liked to say, ‘We’re like Cheers,’ because the shop was a place where everybody knew your name,” Lynda McDevitt said. “Most of the friends we have now, we made at our store.” 

Eventually, the shop’s six-days-a-week schedule began to take a physical toll, and the couple wanted to spend more time with their granddaughter. They sold Corner Wines in 2020. Now they call themselves “officially retired” but continue to stay engaged, providing occasional consulting services and leading “wine-themed” group tours to places like Tuscany and Napa Valley. 

Self-confidence is the key to success when you start a new career or any other new endeavor.

“We had such a passion for wine, we couldn’t let it go,” Lynda McDevitt said. 

Several factors made the McDevitts’ later-in-life transition possible. Both enjoy good health. Pensions from their IRS careers provided a financial base. Wine was their passion, but they’d honed practical skills while at the IRS: the basics of accounting, managing and marketing a business. Both had work experiences that gave them the confidence to start something new: Jim had presented proposals to top officials at the IRS; Lynda had fielded media interviews as an IRS spokesperson. 

That type of confidence is key in embarking on any new career or endeavor, Evans said. Even though he had worked in a very different field before he became a nurse, basic skills—like computer proficiency—buoyed his confidence to tackle the next phase. 

“Computer literacy was a big part of being able to jump back into college in my late 50s, to be able to function and graduate,” he said. “You can’t really stay in the game if you can’t work at a computer at least at a minimum level.” Former co-workers in his previous career who didn’t embrace the computer and internet have had more difficulty adapting, he added.

Along with confidence, a new start takes humility. 

“Assuming the role of novice required … swallowing my pride,” Evans said. That was humbling but necessary to learn the skills to serve patients.

Finding Purpose

In filming her 2022 documentary Lives Well Lived: Celebrating the Secrets, Wit & Wisdom of Age, which aired on PBS, filmmaker Sky Bergman chose interviewees, ages 75 and up, who were resilient, active and engaged—and discovered that all shared a common trait. 

“Everyone had a sense of purpose,” said Bergman, who is professor emeritus of photography and video at Cal Poly State University in San Luis Obispo, CA. “That purpose could change over time, and often did change over time, but that was the common thread.”

A health scare in 2003 helped Mellanie True Hills, 71, of Greenwood, TX, identify her next purpose. She developed a heart blockage, followed by atrial fibrillation (“afib”), which caused her heart to race. Surgery corrected the problem, but at the time, patients had little access to reliable information about afib. After Hills retired from her corporate job, she created a website, StopAfib.org, and began organizing annual patient conferences featuring experts. 

Skills developed over her long career in IT, web development and accounting all came to her aid. But Hills also credits her thirst for knowledge and her lifelong learning habit. 

When you start something new, don’t be afraid to change or to take a risk.

“When I was young, I had a boss who said, ‘Mellanie finds a vacuum and fills it,’” she said. “That is the mindset you need to have to start something new. You see a need and you fill it. It’s also a matter of not being afraid to change. That is hard for some older adults. Not being afraid to take a risk. Risk is the price you pay for opportunity.” 

Jan Gero pushes himself to keep taking risks artistically at the age of 90. After five previous careers—architect, modern dancer, fashion designer, documentary filmmaker and artist—he has reinvented himself as a monologist. Recently, he performed a one-man show, Naked at 90: An Evening with Jan Gero. 

His daily life is solitary, which he prefers, but he shares a video journal online and hosts The Compulsive New Yorker, a public access cable show from his apartment in New York. 

“I’m basically just saying what’s on my mind,” he said. “A lot of what I’m doing is trying to come to terms with death, because it’s a finality, a biological reality. Every day, I’m kind of asking myself the question, ‘Am I on the path to going down with a smile, rather than a sneer?’” 

Envisioning the Extra Years

Jerry Cahn, an executive coach in New York, recently launched a workshop titled, “Age Brilliantly: Maximize Your Ability to Lead a Fulfilling 100+ Year Life.” It’s not just for executives approaching retirement, however. 

The 30 “extra” years that many will enjoy shouldn’t be viewed as tacked on at the end of life, he said. Those years might be devoted to sabbaticals at any age, to provide breathing space for creative growth. Cahn cited a young professional who left one high-pressure job but postponed the start of his next job to devote four months to travel, including visits to Mount Everest, Nepal and the Camino de Santiago in Spain. 

Cahn added that many executives meticulously plan their finances for retirement and later life but head into their post-career years with vague plans, such as, “I’d like to travel.” 

“That might mean traveling six or seven weeks out of the year,” he said. “But what about the other 45 weeks? They don’t tend to think about that.” 

Mary “Molly” Camp, MD, assistant professor in the department of psychiatry at UT Southwestern Medical Center in Dallas, said more and more of her patients want to talk about how they’ll handle retirement and the second half of life. 

Young people might seek help for transitions—a guidance counselor when choosing a college or a therapist for premarital counseling. But there’s little to guide middle-aged or older people to prepare for the later transitions in life. Camp hopes that’s beginning to change.

“We’re evolving in our knowledge of human development, where we don’t think of adulthood as something you reach and then it plateaus and stays the same,” she said. “Instead, we’re understanding that life changes through lots of different phases, lots of different transitions, including career changes and retirement. It’s not that we turn 55 and everything becomes static.” 

Yet Another Chapter 

The COVID-19 pandemic forced Bob Evans to pivot again in 2020. His age and health issues made it too risky for him to work around COVID patients. He left nursing with plans to eventually return—then discovered that he enjoyed retirement. His wife, an IT recruiter, still works from their home in the Cleveland area, so Evans, 68, handles the household duties, including maintaining their large, landscaped yard, and volunteers with the Cleveland Hiking Club, helping to build a new pavilion at a local park. He looks in often on his father, who’s 93 and lives nearby. He’s developed an interest in family history. 

Just in case, he also keeps his nursing license up-to-date. 

“I’m not sure what the next chapter is going to be,” he said, “But that’s the fun part.”