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.
Want to read more stories like Denise’s?
Get your copy of Aging Icon on Amazon and meet the extraordinary individuals redefining what it means to age with purpose, power, and possibility.
When Compassion Meets Advocacy: Pete’s Story
Many people start thinking about getting their affairs in order by calling an attorney. It makes sense because Elder Law and Estate Planning Attorneys know the legal documents that protect your assets and your wishes.
But lawyers can’t (and shouldn’t) do it all. They draft the paperwork, but they don’t walk through your life with you. That’s where a Patient Advocate comes in because they connect the dots between life, health, and planning.
Pete’s Call for Help
Pete’s story began with a cry for help. He called Elder Law Attorney Iris Bikel after realizing that the neighbors who had been “helping” him were actually taking advantage of him. They had convinced him to sell his condo and were pushing to gain Power of Attorney over his finances. Fortunately, Pete’s distant cousin referred him to Iris, who immediately brought me in as his Patient Advocate.
When I first met Pete, he was frail, hungry, and utterly defeated. A retired Avon executive who once designed the company’s training manuals, Pete had lived a full, rich life. But after his career ended and his sister passed away, he became isolated and easy prey for those with selfish intentions.
A Turning Point
My first priority was Pete’s health. I took him to the hospital, where doctors discovered he was dehydrated and depressed. When asked if he had ever thought of harming himself, Pete quietly admitted, “Yes, I look out the window and think I should jump.”
That honest moment changed everything.
With the support of his medical team and my advocacy, Pete agreed to inpatient care. Over the next two months, his spirit began to revive. He made friends, rediscovered his confidence, and began to see that life still held meaning. Together, we explored living options and found an Independent Living community that fit his needs, one that offered support without taking away his independence.
Rediscovering Purpose
Pete thrived in his new environment. He joined the residents’ council, took up Tai Chi, and even learned Tai Kwon Do in his eighties! He rediscovered joy, purpose, and community. He began to share stories of his world travels, his deep love of art and music, and even long-hidden truths about himself that he had carried for a lifetime. It was as if he had finally exhaled after holding his breath for years.
Life’s Full Circle
As time went on, Pete’s health declined and his finances grew tight. We worked together to transition him to a Medicaid-supported facility that still respected his dignity and individuality. Even as his world became smaller, he filled it with beauty carefully decorating his new space with art and personal treasures.
When his vascular condition worsened, he made the brave choice to forgo extreme medical interventions. I remained his advocate and his friend until the end, and when my colleague Jackee Namwila stepped in during my absence, she provided the same level of compassion and care. Pete’s final days were spent with dignity, comfort, and peace.
Lessons from Pete
Pete’s story is a powerful reminder of why Patient Advocacy matters, and what can happen when someone has a steady, compassionate guide through the maze of aging and healthcare.
Here are a few takeaways from Pete’s journey:
- Legal planning needs life planning. Attorneys handle the documents, but a Patient Advocate helps you gather the information, make the decisions, and stay engaged in the process.
- Isolation can be dangerous. Even smart, capable people can become vulnerable when they’re alone. Community and oversight can literally save lives.
- Independence doesn’t end with age. With the right support, older adults can maintain autonomy and joy well into their later years.
- Advocacy is about relationships. A good advocate never disappears when the checkbook runs out and they remain a source of strength and friendship.
- A life well-lived deserves dignity until the end. Pete’s story shows that even in the face of decline, choice and respect make all the difference.
Pete’s journey is one I will never forget. It’s why I do what I do, helping people navigate the complex and deeply personal path of aging with grace, empowerment, and humanity.
(From Aging Icon – How You Want to Live: When They Say Nothing Can be Done, That Just Means They Don’t Know What to Do. http://bit.ly/47OKWel
Never Stop Learning, The Key to a Lifetime of Growth and Impact
I am honored to receive Pulse’s Lifetime Achievement Award for my work as a patient advocate, mentor, and educator. (https://www.pulsecenterforpatientsafety.org/fcpa)
It’s a humbling recognition of decades spent helping individuals navigate the healthcare system and empowering professionals in our field. But as I step onto that stage, I am not standing still. In fact, I am attending this two-day training because I believe that learning never stops, regardless of age, experience, or accolades.
Many might ask, “Why continue training when you’ve already achieved so much?” The answer is simple. I do it to stay relevant, engaged, and vibrant in both my professional and personal life.
Learning is not just about acquiring new skills; it’s about keeping our minds sharp, expanding our perspectives, and fostering deeper connections with the world around us.
I have spent my career challenging the idea that limitations are set in stone. My book, Aging Icon, was born from this philosophy. Just as I refuse to accept dead ends for my clients, I refuse to accept that I have learned everything there is to know in my field. Every training, every conversation, and every piece of new knowledge adds to my ability to serve others.
The world of healthcare is constantly evolving. New policies, technologies, and treatments emerge every day. If we stop learning, we fall behind and when you’re in the business of advocating for others, falling behind isn’t an option.
Attending training sessions, engaging with new ideas, and collaborating with the next generation of patient advocates ensures that I can continue to provide the best guidance possible.
But beyond professional growth, continuous learning keeps me young in spirit. It introduces me to new people, fresh perspectives, and unexpected opportunities. It fosters curiosity, which in turn keeps life exciting. When we open ourselves up to learning, we expand not just our skill set but also our relationships, our communities, and our world.
Receiving a Lifetime Achievement Award is not a signal to slow down, it’s a moment to celebrate, reflect, and then push forward with renewed purpose. I encourage everyone, no matter where they are in their journey, to seek knowledge, embrace new experiences, and never stop asking, “what else can I learn” because when you stay curious, you stay engaged. When you stay engaged, you stay young. And when you keep learning, you keep making an impact.
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