Chapter 20: Getting Old Is Not For Wimps.

How To Handle The Extra Challenges Of Being A Senior.

I stood at the bottom of the hospital bed, talking slowly and soothingly to my mother as she writhed uncontrollably within the raised safety rails, crying out, “Help. Help.” Her stick thin limbs were mottled with yellow and blackish-purple bruises. We had placed hospital pillows between her body and the rails to protect her. But the pillows were insubstantial with too much air between the lonely strands of polyester stuffing, as though there was some hospital protocol for the supply of stuffing as there was for so much else.

I tried to keep my voice level and calm, yet loud enough for her to hear me. I leaned close to the head of the bed. “Try to take a deep breath in and slowly let it out. It may help.” She tried but her ragged breath was more akin to the breathing exercises I did in labor than the meditative ones she and I had practiced over the past few months.

“I can’t…stop it,” she cried out. “Help me!” I stroked her forehead with my thumb and murmured unhelpful sounds. Finally, after about 20 minutes, her body quieted and she fell asleep, though her head and limbs twitched from time to time.

Just four months earlier, my mother was an independent, highly competent super senior who joked that getting old wasn’t for wimps. She stopped driving at 93 when COVID began because, she said, there was no place to go. Her network of friends, most of them ten to twenty years younger than she, would call to check in, even though they were all too terrified to meet in person. I worried about her yet she thrived as she had always done.

She rocked the first year of the pandemic. She learned to use Zoom and FaceTime on the iPad we bought her, chatting with her children, grandchildren and great grandchildren. She wrote long erudite emails and spoke knowledgeably about the national news, politics and the Middle East.

One Friday night in January 2021, mom was alone at home, preparing for the coming of the Sabbath. Despite our multiple entreaties to never step away from her walker, she chose to carry the Sabbath candlesticks to the dining table. It was just a few steps, she reasoned. The large clay tiles were slippery and unforgiving. Mom fell, cracked her skull open and bled profusely over the polished floor.

For the next two months, due to COVID rules, my sister and I managed her care as best we could from twelve hundred miles away. The hospital had no geriatrician on call for the emergency department (ED) even though Palm Beach County has a significantly higher senior population in winter than the US overall. The young interns working late Friday night focused solely on stopping her bleeding, which they didn’t accomplish. She continued to bleed from her wound for weeks. They didn’t return our phone calls so we weren’t able to explain my mother’s baseline cognitive strength. They saw an elderly, feeble-minded, confused woman, and assumed she had dementia. She tried to advocate for herself but that ended when they fed her sedatives without checking her charts clearly marked with the warning NO BENZODIAZEPINES. Because they kept her sedated, constantly, the neuro consult never examined her while she was conscious. They sent her to a local rehab. Things got worse from there.

Introduction

Seniors get misdiagnosed more often than younger adults. Of course, there’s no diagnostic cliff that dumps us when we turn 65; it’s a gradual slope and each path is unique. As a geriatrician once told me, “If you’ve examined one 75-year-old, you’ve examined one 75-year-old.” No two seniors are the same medically, cognitively, or physically. Each new patient comes with a lifetime of experiences, skills, and strengths, and with a wide range of abilities and challenges. Caring for senior patients is complex and requires a level of patience rarely seen in medicine anymore.

Even common conditions are misdiagnosed. These six diseases were either overdiagnosed (the patient didn’t have the condition but was treated for it) or underdiagnosed (the patient was not treated for this condition though he had it) or both: chronic obstructive pulmonary disease (COPD), dementia, Parkinson’s Disease, heart failure, stroke/transient ischemic attack, and acute myocardial infarction.

How Does The Aging Process Contribute To Misdiagnosis?

Older patients’ evolving physical and mental frailties play a role, plus their aging bodies are more fragile so they can be harmed more easily when it happens.

Medical History

The process, for all of us, begins with getting a medical history, including reviewing current prescriptions and drug allergies, current and past medical conditions, and describing new concerning symptoms.

Things as simple as hearing loss or vision issues can interfere in getting an accurate history. Memory issues lead to inaccuracies. Your loved one can be physically able to fill out the form but may forget relevant details. It affects their ability to track symptoms and pain levels, or to describe them in ways the doctor or nurse can address. If they’re dealing with any level of dementia, their recall as well as their personal records of prior medical visits, medications, and tracking of symptoms may be disorganized and filled with holes. Each of these can derail the search for a diagnosis.

Cultural and generational issues are another barrier to getting an accurate diagnosis. Many older people learned to be overly deferential to their doctors. Perhaps they’re uncomfortable advocating for themselves, asking for more information, or correcting errors. Unfamiliarity with medical settings can also create feelings of insecurity and anxiety.

Testing and Treatment

Testing and treatment effectiveness are dependent on the patient’s memory. They need to remember which tests were ordered, when and where to go, and how to prepare for them. They may not comply if they can’t remember how to follow the treatment plan including what medications to take, when and how, foods and vitamins to avoid, or if they find it too complex. Then it’s unclear to their doctors if new or worsening symptoms are due to not following directions, the disease progressing or if they signal a new condition.

Polypharmacy (taking 5 or more medications daily):

Seniors not only take more medications than younger people, the number they take has doubled in the past 20 years. Over 40% of seniors took at least 5 prescription medicines in the past 30 days.

This leads to three potential problems. First, every medication has side effects. Second, medicines often interact with one another and cause additional side effects or new medical problems. The more medicines you take, the greater the odds of complications with how each works alone or how they work together. Third, some medicines are fundamentally worse for older adults because of their side effects or high potential for interactions or they’re simply too strong. The Beers Criteria for Potentially Inappropriate Use in Older Adults is a guide for doctors which lists medications older patients should try to avoid, like benzodiazepines. My mother’s forced dangerous dosing of benzodiazepines not only stalled the diagnostic process in the hospital but caused a ruckus at the rehab.

Benzo Boomerang is the name of what happened when my mom took sedatives. It would knock her out but when it wore off, she would be angry, hyperactive, and interruptive. She also had logical reasons to be angry; she was a fall risk and the rehab ignored it so she fell out of her bed the first night and broke two ribs. They ignored her pain and she fell again the next day, bruising her forehead. Plus, she told them she was certain she had a urinary tract infection (UTI) and they didn’t test her for days. UTIs often cause delirium. That contributed to her combative stance. She ended up advocating for herself by staging a sit-in on the floor of her room and refusing to engage until they took her symptoms seriously. Luckily, I was in town waiting for my one visit a week when I got the phone call to come and pick her up. They had left her on the sidewalk outside the rehab in a wheelchair with all of her clothing. Classic patient dumping.

It took a few months but eventually my mother’s traumatic brain injury was correctly assessed and treated. She was never fully independent again but she returned to a life filled with love and friendship until she died.

How Does The System, Doctors’ Training And Experience Contribute To Misdiagnosis?

Let’s start with hospital system design which echoes how doctors are trained. For example, older patients often have several medical conditions under treatment simultaneously but hospitals are organized with departments that focus on doctors’ specialty training, i.e., cardiology, neurology, orthopedics, etc. This organization persists even though despite seniors represent over half the hospitalized patients at any one time.

Healthcare professionals’ perceptions, lack of training, and biases are key additional factors. If you’re a senior, or caring for one, you’ve probably witnessed how often older patients like my mother are ignored, their symptoms rationalized as aging. The stereotypical view of 80+ year-olds is that they’ve lived a good long life and aren’t worth the same degree of trouble as 20 to 40- somethings. There’s a lack of interest, training, and knowledge about the aging process.

Geriatrics is the branch of medicine that specializes in the health of older patients. People are living longer so there’s a growing demand for geriatricians. The current US population of people 65-years-old and older is 18 percent, more than double what it was sixty-five years ago when our newest seniors were born.

Unfortunately, there is a severe shortage of geriatricians. Only 2% of primary care doctors are geriatricians today. Meanwhile the senior population in the US will grow to 89 million by 2060, that’s almost 1 in 4 Americans. About one-third of seniors need a geriatrician; primarily those over 80 or who have more than one medical issue associated with aging.

Geriatricians spend more time with patients than most primary care doctors, especially on a first visit, because they are as concerned with a patient’s baseline ability to function well as they are with any medical issue. This initial getting-to-know-you time is essential.

Primary care physicians may be trained to treat all adults but older seniors need doctors with specialized training. They may have several underlying conditions that complicate their care. Doctors should know how to interpret test results for older patients. What may be a worrisome blood pressure measure for an otherwise healthy 35-year-old, may be a good measure for an 80-year-old on treatment for high blood pressure. Some healthcare professionals with few seniors in their practice may anchor on diseases associated with aging and miss more universal ones, like infection or cancer.

Physicians should be able to separate medication side effects from new organic symptoms but it’s not always easy to do. Doctors can end up chasing the symptoms with new medications which have their own side effects, known as a cascade of symptoms.

Doctors also need to check senior patients’ nutritional health. Seniors have different dietary needs than younger stronger bodies. They eat less which can lead to a shortage of necessary nutrients. On the other hand, loss of appetite and weight may be signs of serious and life threatening diseases, as well as medication interactions. Drug interactions may affect appetite as well as kidney or liver function, sleep, hearing, mood, and memory.

Overdiagnosis of dementia, for example, is so common, that it’s the doctor’s cognitive problem rather than the patient’s. Dementia, like Alzheimer’s Disease, is the loss of mental functions which affects everyday life. But there are many causes of confusion and memory loss, like potential drug side effects or interactions, depression, head trauma, urinary tract infections (UTIs) like my mom’s, Lyme Disease. Even low B12 levels can present like dementia.

Delirium is often misdiagnosed as dementia, but the difference is that delirium has a definable cause, occurs suddenly and can be stopped with treatment.

Steps Seniors Can Take To Get An Accurate Diagnosis

The challenge for seniors –– and their caregivers –– is to identify where the shortfalls may be. How is the patient’s ability to share their medical concerns accurately and completely? Where are the current healthcare practice’s blind spots? There are steps patients and their support team can take when they visit their doctor, before, during, and after. Ask yourself these questions:

• Are you capable? Can you fully participate as a partner in your medical decisions? If not, then a family member, close friend, or patient advocate should plan on attending every appointment and maintain the records. Of course, if someone can’t be there in person, they can attend by phone or video chat. That’s how I cared for my mom most of 2020 when family wasn’t permitted to be there.

• Are you prepared? Doctors are time-pressured and have little patience for wandering narratives. Ensure all the important medical info is at your fingertips using this tip from Chapter 2. And prepare what you’re going to say in advance to make the best use of your time. It’s not helpful to call after the appointment when you remember something you wanted to ask.

• Can you take that new medication? Search The Beers Criteria for Potentially Inappropriate Use in Older Adults online before you agree to fill any prescription. (It’s free online but costly to download.) While you’re at it, check your current prescriptions against the list. And if your doctor dismisses the importance of this, advocate for yourself by asking your pharmacist for safer alternatives and requesting the doctor try them first.

• Are you clear? At the end of a doctor visit, do you understand the instructions and know what you need to do next? If not, ask the doctor or nurse to write it down for you. Feel free to ask questions before you leave.

• Are you connected? Most practices prefer to communicate with their patients via the online patient portal. The staff can help you sign up for it. Try to check it after the appointment for accuracy. They’ll send emails whenever there’s new information like test results. Doctors may also have low expectations of seniors’ tech abilities so they don’t even offer them the opportunity to create an account. They forget that most people under 75 are comfortable with using the internet. If you’re uncomfortable, ask an adult child or a younger friend to help. Caregivers can also get an automatic email when there’s an update.

• Does the doctor “get you”? If your doctor isn’t a geriatrician, try this guide to discussing age-friendly care with your existing doctor. If you feel dismissed or ignored by your current practice, it’s time to get a second opinion or find a new practice.

• Is there a better alternative? If you’ve decided you’d prefer a geriatrician, The American Geriatrics Society has a search tool which lists healthcare professionals who specialize in older adults by state and city. If there are no geriatricians in your area, ask your current doctor for a referral or ask friends who they prefer.

For Caregivers And Family Members

You have an essential role, especially if your loved one is in the emergency room. It helps to frame what the medical team sees. Tell them about the patient’s baseline life and health before the current issues arose. Put it into context for them. For example, “My father is actively involved in the community and loves jazz concerts. He plays golf but suddenly seems listless and unengaged.”

If you notice sudden onset of any new symptoms but especially confusion, personality change, or a movement disorder, call their physician. It may be serious, like a stroke but it’s also likely to be due to progressing symptoms of a current condition or to a new medication, too much of a medication, or a drug interaction. HealthyAging.org has lots of reliable information about medical conditions, prevention, wellness, medications, and much more.

Ask your parents to name you as their medical proxy so you have the legal right to be involved in their medical care and to represent their wishes if they’re unconscious. Add the term ICE to your contact info on their phone. It stands for “In Case of Emergency.” Thankfully, my parents had named my sister and I as their medical proxies years earlier.

The most important thing you can do, as a senior or someone who loves one, is to stay alert and aware of changes: physical, mood, and abilities. Don’t assume any change is a natural part of aging and don’t be afraid to be dismissed. Advocate for yourself –– for your loved one –– and be open to changing medical practices if necessary.

Next up: Chapter 21 - What Do Patient Advocates Do? The Many Roles Of Patient Advocates. How You Can Become An Advocate, Too.

© Helene M. Epstein 2025