“You Saved My Sanity”: A Daughter’s Long-Distance Dementia Journey and the Advocate Who Changed Everything
Some stories don’t just describe what happened, they feel like what happened.
Andrea lives in Oregon. Her mother lives in New York City. Her mother is 93 now. When Andrea first met Caryn Isaacs, her mother was 88 and already showing signs of dementia.
Andrea opens with a line that says it all:
“To say that Caryn saved my sanity is an understatement.”
After reading what Andrea and her mother lived through, the years of confusion, grief, safety concerns, medical decisions, paperwork, and long-distance worry, it’s hard to imagine a more accurate statement.
Andrea isn’t just describing the help Caryn provided. She’s describing the emotional relief of finally having someone capable, experienced, and compassionate standing in the gap when a family is stretched to its breaking point.
Before Caryn: Dementia, Denial, and a Fragile Household
Before Caryn entered the picture, Andrea’s mother lived in Jackson Heights, Queens, with Andrea’s younger sister. Andrea’s mother was beginning to show signs of dementia but was in denial, something many families recognize. Dementia often arrives quietly, and at first, it’s easy to explain away.
At the time, Andrea’s sister was the primary caretaker, but the situation was complicated. Her sister had her own physical and emotional challenges, and the two had a co-dependent relationship. Her sister rarely left the house, and Andrea’s mother couldn’t do anything without worrying about leaving her sister alone.
Even then, the family was living on a fragile edge, and as dementia progressed, it became unsafe for Andrea’s mother to leave the apartment unaccompanied.
A Sudden Loss That Changed Everything
Then came the devastating curve ball. Andrea’s sister passed away unexpectedly in her early 50s. Andrea received a call from the police telling her that her sister had died suddenly at home. Later, they learned it was due to a pulmonary disease. In an instant, Andrea’s mother was left alone and with dementia in the mix, “alone” was dangerous.
Andrea describes her mother leaving the apartment, forgetting where she was going, and getting lost. More than once, the police had to bring her home. The situation was no longer manageable.
The Chaos of Legal, Financial, and Care Logistics
Andrea flew to New York City to try to stabilize everything. The family had already been working with a wonderful elder law attorney, but after Andrea’s sister died, things became far more complicated especially because many accounts and responsibilities had been in her sister’s name.
Andrea needed power of attorney transferred. She needed access to bank accounts. She needed care in place. And she needed to do all of it while living 3,000 miles away. The attorney helped her find a home health agency to send aides once Andrea returned home. At first, it seemed like the solution, but it quickly became a nightmare.
When “Care” Isn’t Really Care
Andrea describes those months with the agency as a disaster. Aides called constantly saying her mother had left the apartment and they couldn’t find her presumably because she wasn’t being supervised properly. Her mother began running out of food. The aides repeatedly asked Andrea for money to buy groceries, but Andrea suspected the food wasn’t actually going to her mother.
It was expensive and stressful and when you’re 3,000 miles away, that kind of worry doesn’t stay contained. It seeps into every part of your life.
The Oregon Move: A Loving Plan That Didn’t Work
After two months, Andrea and her husband made a decision many long-distance families eventually face and decided would move her mother to Oregon.
Andrea found a lovely, assisted living facility near their home and arranged private healthcare. She flew back to Queens, packed what she could, and brought her mother to Oregon but it didn’t go well.
Dementia and change can be a combustible combination, and Andrea’s mother did not adjust. She didn’t get along with Andrea’s husband. Andrea’s children avoided her due to erratic and sometimes mean behavior, and when shown the assisted living facility, her mother flatly refused to live there.
Andrea was emotionally spent. She couldn’t imagine taking another flight back to New York with her mother. That’s when she called the elder law attorney again, desperate, and out of options.
The Turning Point: “Call Caryn”
The attorney recommended Caryn Isaacs.
Caryn arranged to meet Andrea’s mother at JFK and bring her back to Queens. Andrea admits she was nervous about trusting someone she had never met, but due to her responsibilities in Oregon, she had no choice.
Caryn picked her mother up, took her home, bought groceries, and helped her settle in. Andrea describes Caryn as “like an angel sent to help us out.” From that moment on, Caryn became what Andrea calls a substitute “Me.
Oversight, Advocacy, and a Safer Path Forward
At first, they continued using the same agency, but Caryn visited at least once a week while the aides were there. That oversight changed everything.
Caryn also handled what long-distance families often can’t: finding doctors and dentists, scheduling appointments, arranging transportation, checking safety, and observing changes in behavior. Eventually, Andrea and Caryn moved her mother into assisted living in Queens. Andrea feared another disastrous transition, but Caryn approached it gently, keeping things calm and simple.
That was five years ago. Andrea’s mother still lives there.
Advocacy Doesn’t End Once They’re Placed
One of the most powerful lessons in this chapter is that assisted living does not replace family. It replaces some tasks but not the need for advocacy.
Caryn continued weekly visits. She ensured Andrea received weekly calls from her mother. She advocated medically, communicated with doctors, and protected Andrea’s mother from unnecessary rehab placements and risky surgery decisions. During Covid, Andrea’s mother spent over a month in the hospital. Caryn couldn’t visit, but she called regularly and stayed on top of everything.
“Go on the Vacation”
Andrea shares one moment that says everything.
She had planned a bucket-list trip to Africa for two weeks, $20,000, years in the making. As it approached, Andrea was consumed with guilt and anxiety. Caryn was compassionate, but firm.
She told Andrea to go. Not to throw away her life living trapped in “what if.” Caryn even helped arrange a pre-paid funeral package so if something happened, everything would be handled.
Andrea didn’t know that option existed, but Caryn did.
Final Takeaways
Andrea’s story is ultimately one of gratitude. Her mother is safe and stable, and Andrea can finally breathe.
As she says:
“I never question how much Caryn really cares. Otherwise, I do not know what I would do.”
That is exactly what I do as an Aging Icon. I’m not someone who simply shows up, but someone who changes the entire course of a family’s life through experience, compassion, and unwavering advocacy.
John. When Loss, Loneliness, and Identity Collide
When I first met John, he was living in a two-bedroom apartment in Manhattan, just steps from the Museum of Natural History. On paper, his life told a story of success with nearly forty years as an immigration attorney, a sharp mind, a rich professional history, and decades of friendships. But the man I met was deeply unwell, physically, emotionally, and psychologically, and living a life that had grown painfully small.
John’s decline did not begin with illness. It began with loss.
Years earlier, John’s longtime partner, Maxine, was murdered near Central Park. That singular trauma shattered his sense of safety and identity. After her death, John withdrew from life. He stopped working, began overeating, and became consumed by the belief that he was gravely ill, despite little medical evidence to support many of his fears. His world narrowed to doctors’ offices, hospital rooms, and eventually, institutions.
By the time I entered his life as an advocate, John was struggling with extreme obesity, a serious hernia, and a complex mental health profile that included borderline personality disorder. His apartment mirrored his inner state, cluttered, dirty, and neglected. Although he owned valuable items from a once-adventurous life, travel artifacts, collectibles, a coin collection, he refused to care for the space. He no longer believed the apartment, or much else, was worth investing in.
The Push and Pull of Help
John’s sister, Kathy, lived in Florida and was desperate for local support. John was lonely, but also resistant to help. He allowed a woman to live with him for companionship, even though the arrangement was deeply unhealthy. She contributed nothing financially, overtook the living space, and ultimately confined John to his bedroom, yet he could not bring himself to ask her to leave.
This pattern repeated itself everywhere: John wanted help but rejected it the moment it arrived.
We began with the basics, medical evaluations, home clean-up, and hiring aides to assist with daily living and even that proved difficult. The aides provided were poorly trained, and John’s frustration quickly turned into hostility. While his behavior could be intimidating, it was also rooted in fear, grief, and a desperate need for control.
John oscillated between cooperation and rage. He would demand help, then accuse those helping him of incompetence or mistreatment. He craved care but resisted accountability. Nowhere was this more evident than in his relationship with hospitals.
John loved hospitals.
There, he felt attended to, important, and safe. He knew how to gain admission, how to insist on tests, and how to extend his stays. Hospitals offered structure without expectation with no physical therapy demands, no participation requirements, no push toward independence. They were, in many ways, a sanctuary from loneliness.
Rehabilitation facilities, on the other hand, represented everything John resisted. Rehab required effort, movement, and engagement with a future he no longer trusted. He refused therapy, demanded early discharge, and cycled repeatedly between home, hospital, and rehab, and each cycle left him weaker and more dependent.
Despite claiming he was too ill to exercise, John could suddenly summon physical strength when it suited him, such as insisting on navigating subway stairs to go home. These contradictions were not manipulations so much as manifestations of a fractured inner life.
Assisted Living, Hope and Breakdown
Eventually, assisted living seemed like the right solution. John moved into several facilities, some upscale, others less so. Each placement came with hope, and each ended in conflict. John tested boundaries, challenged staff, and exerted control through complaints and disruptions. Over time, he was asked to leave nearly every facility in New York.
During a quarantine caused by a flu outbreak, something remarkable happened. Confined to his room, with meals provided and no pressure to participate, John stabilized. A clinical social worker worked with him during that period, and for a brief time, he cooperated and seemed calmer. But once normal routines resumed, so did his anger and resistance.
Ultimately, John exhausted every assisted living option in New York.
Florida and the Final Chapter
At John’s request, we arranged a move to Florida to be closer to his sister. This required giving up his rent-controlled apartment, a monumental decision that carried both emotional and financial weight. When the apartment was cleared, we discovered devastating losses, including valuables stolen, possessions destroyed, and his treasured coin collection gone.
Through careful legal negotiation, John received a substantial settlement for the apartment, making the move possible. In Florida, a facility agreed to take him despite his history. Kathy furnished and prepared his new space, hopeful that proximity and a fresh start might help.
But the same patterns followed.
John continued to clash with staff, refuse cooperation, and seek hospital admissions. Eventually, Kathy reached her limit. A lawyer was appointed to manage John’s finances, but without a healthcare proxy, critical medical decisions were made without full context. Against prior medical advice, John underwent hernia surgery and did not survive.
His death was tragic, and in many ways, avoidable.
Remembering the Man He Was
To understand John fully, one must also remember who he had been.
His longtime friend Stan knew that man well: the brilliant University of Pennsylvania graduate, the adventurous traveler who crossed the Sahara and climbed the Himalayas, the meticulous lawyer, the loyal friend. John was intelligent, principled, and deeply interesting. He was also demanding, particular, and often difficult but fiercely honest and capable of deep connection.
Stan stood by him for over forty years, visiting him in facilities, sharing meals, listening to complaints, and bearing witness to the slow erosion of a once-vibrant life.
Key Takeaways from John’s Story
- Unresolved grief can reshape an entire life. Without support, trauma can quietly dismantle health, identity, and relationships.
- Loneliness often masquerades as illness or anger. John’s behaviors were frequently rooted in fear of being alone.
- Mental health profoundly affects aging outcomes. Physical care alone is not enough.
- Boundaries are essential even when compassion runs deep. Help without structure can enable decline.
- Healthcare proxies matter. Advocacy saves lives.
John’s story is not one of simple failure or defiance. It is the story of a man who could not reconcile who he had been with who he had become. And it is a reminder that aging with dignity requires not only care, but courage, clarity, and connection.
Caryn Isaacs Turns 75 and She’s Giving Back
This year, instead of gifts, Caryn Isaacs is celebrating her 75th birthday by raising funds for a cause that is deeply aligned with her heart and life’s work: Pulse Center for Patient Safety Education & Advocacy (Pulse CPSEA).
Here’s how it works. It’s easy (and fun)
- Caryn has written her own song
- If you sing Caryn’s song and post it on your page, Caryn will donate $75 to Pulse
- You don’t pay a dime, your voice is the gift
- One song = one $75 donation
Find the song here:
https://carynisaacs.com/2024/02/17/aging-icon-the-song/
About Pulse CPSEA
Mission
Pulse Center for Patient Safety Education & Advocacy (Pulse CPSEA) is a nonprofit 501(c)(3) community-based organization dedicated to raising awareness about patient safety through advocacy, education, and support.
Vision
Pulse CPSEA envisions a world where the patient’s voice is heard and where no one is harmed by health care.
What better way to celebrate 75 years than by amplifying voices, spreading joy, and supporting patient safety?
June’s Story. Legacy Requires Intention and Protection!
June’s story is one I return to often, because it captures both the beauty of aging with intention and the risks that arise when important details are left unchecked. June had lived a rich, adventurous life. She was a world traveler, a lover of art and antiques, and one of the first women pilots to fly out of Floyd Bennett Field during World War II. By the time I met her, her life had slowed, but her clarity had not. She understood what she could no longer do on her own and accepted help without resistance, something many people struggle with as they age.
June found joy in simple, meaningful things, such as reading, watching television, enjoying good meals, and engaging in conversation. When an optical stroke took away her ability to read, she adapted with audiobooks. When her vision continued to deteriorate and she could no longer enjoy the life she valued, she made a deliberate and peaceful decision to stop fighting. June was not afraid of death and knew it was time. Hospice was arranged, and she passed quietly at home, on her own terms.
What followed after June’s death, however, revealed a painful and avoidable reality.
After she passed, June’s stepdaughter, who had been her power of attorney for years and responsibly managing her affairs, went to the bank to settle the estate, arrange funeral expenses, and begin closing accounts. Her intention was not personal gain. She wanted to properly wind down June’s affairs and provide a meaningful financial gift to the aide who had lovingly cared for June for years. Instead, she received devastating news. All of June’s accounts, both savings and investment accounts, had “payment on death” designations naming a former boyfriend as the beneficiary. The boyfriend was no longer involved in June’s life and had since gone on Medicaid. As a result, the funds automatically transferred to the City. Nothing could be reversed. Despite regular visits to the bank and long-standing relationships, no one had flagged the outdated beneficiary designations or suggested they be reviewed. The money was gone.
June’s story underscores a critical and often misunderstood truth: beneficiary designations supersede wills, powers of attorney, and even the best intentions. Without ongoing review, these designations can quietly undermine even the most carefully managed plans.
In the end, the stepdaughter was left to manage what she could. We arranged for June’s apartment to be carefully emptied, selling valuable antiques, artwork, and collectibles. While it was not what June would have wanted, it allowed us to cover necessary expenses and offer a small but heartfelt financial thank-you to the aide who had been such an important part of June’s final years.
Key Takeaways from June’s Story
- Aging well requires both acceptance and vigilance
- Financial oversight must be active and ongoing, not assumed
- Beneficiary designations should be reviewed whenever life circumstances change
- Institutions do not always prompt necessary updates, you must ask
- Caregivers play a vital role and deserve recognition
June aged with dignity, clarity, and courage. Her story serves as a powerful reminder that planning for aging isn’t just about how we live, but about what we leave behind, and whether our intentions are truly protected.
Meet Jean
I first met Jean soon after she’d been moved to assisted living, which is how I meet many of my clients. She’d had what I call a “mystery fall” at the supermarket near her apartment in Queens. One moment she was shopping, the next she was staring up into a bright light with an EMT asking if she was okay. She had no memory of what happened.
In the hospital, all the usual tests were done. Nothing alarming showed up, no stroke, no major medical event. Jean was in her mid-90s (“nine-five,” as she liked to say), walked miles regularly, lived alone, and was mentally sharp. Still, because no one could explain the fall, she was sent to rehab rather than home. From there, as often happens, the path led straight to assisted living.
By the time I met her, Jean was in a one-bedroom apartment in an assisted living facility with almost nothing in it. No TV, phone, radio, or books. Just a bed, a nightstand, a small bureau, and a lamp. This was during the early days of the pandemic, and she was quarantined to her room until she received her second vaccine dose. She had two outfits, the clothes she’d fallen in and one donated set from the facility. No family nearby, no visitors, and no stimulation.
The facility called me because Jean needed someone to assist with all the things they don’t do such as shopping, arranging, and transporting to medical appointments, dealing with her second vaccine, sorting out her finances, and getting personal items from her apartment. She had assumed, as many elders do, that the facility would “take over” and manage her money, bills, and practical needs. That is almost never the case. Assisted living provides room, board, very basic personal services and expects family to do the rest. Jean had no one.
I took her to get that second vaccine dose, neither of us realizing she’d gotten very sick after the first one, a detail she only remembered later. That omission led to a serious reaction and another hospital stay. It’s one of the reasons I insist advocates handle discharges and transitions because we make sure vital pieces of medical history travel with the person.
When we went to her Queens apartment for the first time in three months, it was neat and tidy but buried under piles of unpaid bills and past-due notices. No one knew she’d been gone and no one had stepped in. Together, we chose some clothes, a few pieces of furniture, and then I sat down with her to look at her finances. What I saw is tragically common: she had enough money to live in that private assisted living facility for less than a year, and that’s without paying movers or closing out her apartment. No one at the facility had checked whether her funds were sustainable. They were happy to sign a lease and hand her a key.
I became her Power of Attorney so I could help her navigate all of this while she kept full control over her decisions. She was sharp, opinionated, and very capable. We arranged a prepaid funeral so she could choose her final wishes. We applied for community Medicaid and prepared a move to a state-funded facility that offered small studio rooms rather than the crowded, substandard conditions I’ve seen elsewhere.
The Medicaid facility was “better than most,” but still a dramatic shift for a woman who used to walk to the supermarket whenever she pleased and eat what she wanted. Now her life was regulated: assigned meal times, assigned tables, limited food choices, and no ability to keep a fridge in her room. She couldn’t get something as simple as a ham sandwich because the facility was kosher. She was lonely, surrounded by residents with dementia, and grieving the independence she’d lost along with her friends and old routines.
Jean missed simple, familiar things like a properly mixed glass of Citrucel three times a day, a ham and cheese sandwich, cherry pie, a particular kind of toothpaste (“Arm and Hammer wash,” as she called it). I spent an absurd amount of time advocating over how thick her Citrucel should be mixed and whether she could keep it in her room. It took multiple conversations with administrators and nursing staff before we finally got permission for her to store and mix it herself.
These details might sound small, but they’re not. When someone has had almost all of their freedom taken away like where they live, when they eat, what they can eat, where they can go, being able to control a glass of Citrucel or a tube of toothpaste becomes emotionally enormous. I saw over and over how these tiny wins restored some dignity.
As my travel schedule got busier, I brought in my colleague Jackee, a board-certified patient advocate. She and Jean clicked right away. Jackee helped unpack Jean’s things, played Christmas music on a found CD player, listened to stories about church and old friends, walked her to meals, and guided her into social activities when she felt she didn’t “belong.” Over time, Jackee became the person who brought her ham sandwiches, sweets, new slippers, nail polish, and companionship.
Together, Jackee and I dealt with a maze of insurance problems like railroad pension rules that complicated her coverage, supplemental plans that didn’t include drug benefits, and medical bills that would ultimately be written off. We protected Jean from financial chaos as best we could, while making sure she still had some joy such as outings to the diner, haircuts, clothes bought online on the “little phone,” a small cactus for her windowsill, and a steady supply of journals and pens for her daily writing.
Today, Jean is 97. She still writes in her journal every day, keeps a meticulous “Jackee list” of things she wants to discuss, and remains mentally sharp. She is, undeniably, living with far fewer choices than she once had, but she is not invisible. She has advocates who see her, fight for her, and help her preserve as much autonomy and dignity as possible.
What I want you to take from Jean’s story
If you have an older loved one, or you’re planning for your own future, Jean’s journey offers important lessons:
- Don’t assume the facility will “handle everything.”
Assisted living typically covers room, board, basic housekeeping, laundry, and sometimes a clinic visit. Bills, banking, shopping, medical coordination, and personal items are not automatically managed. - Know the true costs and how long the money will last.
Before signing a lease, sit down and calculate: monthly cost, existing assets, and how many months or years are truly affordable, including moving costs, closing an apartment, and small extras that matter to quality of life. - Get legal and financial documents in place early.
Power of Attorney, healthcare proxy, and a prepaid funeral plan can prevent crises later and ensure the older adult’s wishes are followed while they still have a voice. - Be present at hospital discharges and transitions.
Make sure medical records, vaccine reactions, and key history are clearly documented and transferred. Advocates catch details that get missed. - Ask very specific questions about food and daily routines.
Meal times, flexibility, ability to keep snacks or a small fridge, religious dietary rules—all of this profoundly affects day-to-day happiness. - Respect the “small” preferences.
Whether it’s Citrucel thickness, a favorite candy, or a ham sandwich, these things can be lifelines. They’re about identity and control, not just taste. - Consider an independent advocate.
Someone who understands the system and does not work for the facility can make all the difference in how an elder is treated, heard, and cared for.
Above all remember that advanced age does not erase a person’s ability to think, feel, and decide. People like Jean have lived full, independent lives for decades. Our job is not to turn them into obedient patients, it’s to protect their safety while fiercely preserving their dignity and voice.
Meet Denise
In Aging Icon, I share the stories of extraordinary individuals who have not only navigated aging with grace but have transformed their challenges into catalysts for change. Denise’s story is one of those remarkable chapters and is a testament to resilience, advocacy, and the enduring human spirit.
A Childhood Challenge That Sparked a Lifelong Fight
Denise contracted polio as a child in 1948, long before a vaccine existed. Her legs were paralyzed, but her determination was not. Her parents refused to let her disability define her, insisting she live up to the same expectations as her sisters. She went on to earn a college degree and work in social services, helping others while navigating a world that wasn’t built for people like her.
Turning Adversity into Advocacy
One ordinary morning, waiting for a bus to get to work, Denise refused to be told “wait for the next one” when a driver admitted he didn’t know how to operate the wheelchair lift. Her insistence on fairness drew police, press, and public attention and ultimately led to policy changes. That pivotal moment launched Denise’s life’s work making certain that public spaces were accessible for all. From sidewalk cutouts to elevators in train stations and accessible transportation services, Denise’s determination shaped the infrastructure we rely on today.
Love, Loss, and Legacy
Later in life, Denise married her longtime friend and partner, who became her caregiver as they aged together. Their partnership embodied devotion and independence until his sudden passing left Denise facing new realities, financial, legal, and emotional.
I stepped in to help Denise rebuild stability, from navigating Medicaid and pooled income trusts to ensuring she could remain in her beloved waterfront condo. With a compassionate, strategic approach, I guided Denise toward independence and dignity, even in grief.
Lessons from Denise’s Journey
- Advocacy starts with one voice. Denise’s stand at that bus stop changed accessibility laws nationwide.
- Love and partnership evolve. True companionship adapts through life’s physical and emotional shifts.
- Planning matters. Estate and financial preparedness are crucial at any age or ability level.
- Community sustains us. When family falters or distance grows, compassionate professionals and friends can become chosen family.
Denise’s story reminds us that aging isn’t about surrender, it’s about continuing to shape the world around us with courage and grace.
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The Three Essentials for Planning Your Future are Finances, Health, and Legal Protection
At Aging Icon, we believe that thriving as you age isn’t about reacting to challenges, it’s about preparing for them. That preparation begins with three essential areas that shape your future quality of life:
1. Finances
The first step is getting clear on what you have. Many people avoid looking closely at their finances, but knowing your real financial picture gives you the foundation for every other decision. It’s not just about what’s in the bank, it’s about understanding your resources, obligations, and options.
2. Health
Take an honest look at your health. Do you have medical conditions now? What’s in your family history that could affect your future? By considering the possibilities and looking down the road, you can anticipate the kind of care you may need, including the possibility of not being able to remain at home. Do you know what you would do then?
3. Legal Protection
Once you know where you stand financially and medically, it’s time to visit your attorney. This is where everything is put into writing, clearly and legally. Wills, trusts, power of attorney, and healthcare directives ensure that your wishes are honored and that your loved ones are protected.
These three steps, finances, health, and legal planning, work together to create peace of mind. I help individuals and families navigate these realities with confidence, dignity, and foresight. Planning ahead means you can focus on living your life fully, with purpose and security.
Meet Ed, The First True Example of an Aging Icon
When the events of September 11, 2001, destroyed both the World Trade Center and my career foundation, I left New York and resettled in Florida. Volunteering with a community group called We Care, I saw that seniors needed more than advice on insurance or prescriptions, they needed someone to advocate for their lives beyond medical charts.
To strengthen this work, I also took training through Medicare as a volunteer, which allowed me to give classes and presentations on all aspects of aging, from healthcare and insurance to quality-of-life resources.
This combination of service and education planted the seed for what would become Aging Icons.
My first client, Ed, a former mayor recovering from a stroke, was misdiagnosed, dismissed, and told to settle for decline. In reality, his challenge was Aphasia, a condition that slowed his ability to process language. With the right support, Ed rediscovered purpose: attending services, reading again with adaptive tools, and speaking at community events.
He became the first true example of an Aging Icon.
From Ed’s journey, the philosophy emerged:
- Diagnosis is not destiny. Look beyond labels.
- Purpose fuels health. Seniors thrive when they feel relevant.
- Care must be holistic. Address emotional, social, and spiritual needs, not just medical ones.
This chapter makes clear that aging is not about sitting on the sidelines. It’s about continuing to contribute and live fully. Out of loss came a new purpose, ensuring every older adult has the chance to remain an active, joyful participant in their own life.
Herman’s Story: Why Seniors Need Advocates
When I first began volunteering in Florida as a SHINE Representative and helping older adults understand Medicare and health insurance, I met countless people navigating the maze of aging alone. One story in particular still stays with me: Herman’s.
A Sister’s Worry
Herman’s sister, Trudy, came regularly to my Medicare classes. Active and engaged, she was deeply concerned about her brother, who had stopped leaving his apartment. He wasn’t sick in the traditional sense, but he had given up on daily life.
When I finally met Herman, it became clear that what he lacked wasn’t the ability to get up, it was the motivation. His words were simple: “If I had someplace to go, I would get up.”
A System That Missed the Signs
Soon after, Herman ended up in the hospital following a fall. What should have been a chance to recover turned into a nightmare. Nurses misinterpreted his dry humor as confusion, missed the fact that he had a broken leg, and restrained him unnecessarily.
This is where advocacy becomes essential. Without someone to explain his personality, history, and “baseline,” Herman was seen as another disoriented patient rather than the vibrant man he truly was.
Seeing the Whole Person
As I learned more about Herman, I discovered a full life. He was a German immigrant who served in the U.S. Army, rose to leadership in his union, and lived with energy and joy. Knowing this helped me push for care that matched who he really was, not just what was convenient for the system.
It also reminded me how easily older adults can be taken advantage of, whether through medical neglect or even predatory sales practices, like the cousin who unknowingly signed up for multiple phone contracts. Advocacy is often about fighting battles on multiple fronts.
Finding Dignity at the End
Ultimately, Herman could not return to his apartment. But because of his military service, he qualified for a nearby Veterans’ nursing home. It was the right place, compassionate, social, and respectful. There, he built friendships and received extraordinary hospice care when his health declined. He passed peacefully, honored for his service, and surrounded by dignity.
The Lessons Herman Leaves Behind
Herman’s story is not just about one man. It reveals what so many older adults face:
- Purpose matters. Often, seniors don’t lose the will to live—they lose reasons to get out of bed.
- Systems fail. Without an advocate, oversights and misunderstandings can strip away dignity.
- The whole person counts. Understanding someone’s history and baseline changes how we interpret their needs.
- Advocacy protects. From healthcare to financial exploitation, seniors need someone to stand beside them.
Herman’s journey affirmed why Aging Icons exists. Advocacy ensures that people are seen, heard, and respected in every stage of aging. Seniors are more than patients or statistics, they are veterans, immigrants, parents, workers, dreamers.
And like Herman, they deserve to age with dignity, community, and compassion.
AGINGICON.COM
Have you lived a life of accomplishment, doing what fulfills
you? Have you reached an age where things are harder to do?
Are you a leader and you know that you cannot do it alone?
Then, you are an Aging Icon.
My name is Caryn Isaacs.
Having been at the helm of developing hundreds of healthcare
businesses and running several multi-million-dollar companies,
my journey includes pioneering a physician-owned HMO and
active engagement in Healthcare Reform.
As a Patient Advocate, my company, GetHealthHelp, LLC,
specializes in crafting solutions that enable Aging Icons to
continue pursuing their passions.
An example is a 98-year-old author, playwriter and poet who is
suffering from fibromyalgia and thought that all her work
would be forgotten. I found a way for her legacy to continue by
publishing them as books and now working on having them
made into films.
If this sounds like something of interest, let’s meet to talk
further.
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