Week 3: Joy Through Their Eyes.

As caregivers, we often become the ones who manage joy—trying to create it, protect it, or even just hold onto it in the smallest ways.

But sometimes the most unexpected blessing is this:
witnessing joy through their eyes.
And realizing, in that moment, your heart is healing too.

I’ve lived through more heavy days than I can count. I watched my brother Clint disappear slowly behind the veil of Frontotemporal Dementia. I walked beside my mother as cancer returned and robbed her of strength and independence.

But joy wasn’t gone.
It just looked different.
And it often showed up when I least expected it.

I remember one day vividly—Disco Day at the senior living community where Mom had recently moved.

She had been withdrawn in the weeks leading up to it, unsure of what her future held. We had moved her out of our home so she could receive more support, and the transition was tough. I worried we were losing her spirit, little by little.

But that day?
That day she put on these goofy glasses and headphones, laughed and danced! at the music. It wasn’t the dance floor of her youth—but it was her joy. Right there. In full color.

And I got to see it.

Then there was Clint.

His condition had progressed. Speech was unreliable. Emotions were often unpredictable. But when his daughter got married—he showed up in a way our family hadn’t seen in a long time.

He walked her down the aisle.

He stood tall, arm in arm with his little girl, and for those few minutes, he wasn’t the man fighting a neurological disease.
He was a proud father, giving his daughter away.

I will never forget the look in his eyes the pictures our sister Renee’ took that day.
Pride. Presence. Joy.

And I cried—not out of sadness, but out of overwhelming gratitude that not only our sister, but our mom got to witness that moment. That he and his daughter got to have that moment. That we all got to feel joy that big again, even if only for a moment.

These moments taught me something I now hold close:

Joy doesn’t have to be constant to be meaningful.
It just has to be witnessed.

Caregiving is often about showing up on the hard days.
But don’t miss this truth:
We are also given the rare honor of standing front row when something beautiful breaks through.

So if you’re in a hard season right now—tired, heart-weary, and uncertain—don’t stop looking for their eyes to light up. Because when they do, yours will too.

Most importantly, don’t stop looking for the joyful moments.

Week 1: Redefining Joy in the Midst of Caregiving

When you think of joy, what comes to mind?

For many, it’s laughter with friends, a carefree vacation, or a peaceful morning without a to-do list. But when you’re a caregiver, those moments can feel far away—almost unreachable.

I used to think joy had to be big to count. That it had to feel like freedom or escape. But caregiving taught me something else entirely:

Joy doesn’t always arrive with a smile. Sometimes, it comes with a sigh of relief.

In the early days of caring for my brother Clint and our mother, Carol, I was just trying to survive. I didn’t have time to chase joy—I was chasing stability. I was learning diagnoses, juggling appointments, managing medications, and doing my best to stay upright during the emotional storms.

But one day, I noticed it.

A flicker of peace. Not happiness exactly—but a deep, quiet moment where I felt… grounded. Present. Even connected.

It happened during one of Clint’s hardest days.  He had been living in an assisted living facility for nearly three months when a decision to remove him from that facility was made by the family.  He had suffered excessive amounts of medication he should not have received and neglected for weeks before I could make arrangements to bring him back home.

The day he came home, though, it was a brand-new home and his first time seeing it.  I pushed him around in a wheelchair to show him the house, and even though he struggled to talk (from the disease), the expression on his face was priceless.  I sat him in a recliner that was designated as “his” chair, and he smiled from ear-to-ear, and there was a sigh of relief.  It was in that moment I knew he finally felt safe and cared for. 

Mom and I both smiled, and cried a little, too. But I smiled because in that moment, joy returned.  Not just for me but for Clint too.

Not because the situation was easy. But because I was present for something real. Something sacred.

Caregiving may not always offer us the carefree kind of joy, but it gives us another kind— The kind that looks like:

• A quiet coffee shared in the early morning hours

• Eye contact when you weren’t sure they’d remember your face

• A soft “thank you” when you least expect it

• The peace of knowing you’re doing your best—even when it’s hard

If you’re in the thick of caregiving, you don’t have to chase joy. You just have to notice it.

Redefine it. Reclaim it. Let it find you in the small, sacred pauses of your day.

Because you deserve joy, too.

Note: This weeks picture is of Mom pushing him in his wheelchair, out for a walk in the sunshine and fresh air the day he came home. Both full of joy that Clint was home-safe.

New Blog Series: “Finding Joy Again: Light in the Caregiving Journey”

As a full-time caregiver, I didn’t have time to chase joy.

But one day, it found me—quietly, in a song that ignited something still in Clint's brain, causing his toe to tap and his hands to drum. Or when all the grandbabies were around and the bright expression in mom's smile that would light up the room.

No words, just a quiet-loving emotion. But it was a moment of presence, of connection—and joy.

In Week 1 of my new blog series that will be published Wed, July 30th, “Finding Joy Again,” I reflect on how caregiving redefined what joy means to me.

It’s not about ease. It’s about meaning.

Week 4: Winter – Life After Loss

Nature is nature.  She marches at the beat of her own drum, strolling in and out of our lives when she sees fit.  Although, the rhythms and patterns of her movement are recognizable, to the point of prediction of when she will show herself.  Spring; Summer; Fall, and Winter, each provide tale-tale signs of what to expect and tell us of their projected entrance.

In caregiving, as we’ve been discussing, our seasons are often felt unexpected because we never learned the signs, or at least, didn’t think we needed to.  With each season, the caregiver feels caught off guard; shocked and unsure of how to move forward. 

In Spring, things are new and there is an energetic drive to learn and grow.  Come Summertime, you’ve established routines and there is a rhythm to your day-to-day activities.  Your Summer might last for years, longer than expected, until that first leaf changes color and releases from its branch– that first sign of Fall arriving.  Pumped with the adrenaline that has guided your efforts over the Summer, you continue “handling” whatever needs to be done.  From organizing the funeral to executing your loved one’s final wishes, to making decisions to sell the home or move into it.  Your brain is on autopilot.  It has been, for quite some time.  But Fall doesn’t last very long.  Winter has arrived, along with silence; an eerie stillness you struggle to shake or make sense out of.  You ask yourself “What do I do, now?”

I remember the first time I experienced snow falling.  It was the light, fluffy kind that had this incredible way of muting all sound outside.  There was peace in the stillness of that snowy day.  When I entered my Winter season of caregiving, I sensed a similar silence around me, however it wasn’t peaceful.  It followed me like a shadow, and I found myself lost and wandering daily in search of “what do I do now?”  It was my therapist that pointed out that I went from 30 years in the military, to a divorce, to full-time caregiving, getting remarried, to running a mobile notary business, to managing both my mom’s and brother’s estates at the same time, writing a book and moving three times in between all of that until the silence finally hit.  My therapist noted “you are still trying to land and figure out who ‘Julie’ is or wants to be after retiring from a career in the military.”  There was so much noise around me for so long, as it began to fade, I began to hear the silence of “me” and saw insignificance.  I suddenly felt irrelevant.

What do I do now?

Caregivers tend to give “all” of themselves to that purpose.  I had given all of myself to the Army, my marriage, my kids and a small circle of friends, then my mom and brother when they needed me most.  “Others” were what drove me to get up every day. 

No longer reporting for duty, or having to worry about my adult children, or managing my brother/mom’s medications and appointments, it was time for me to stop trying to meet others’ expectations and start meeting my own.  My husband and I were ready to jump into this thing called “retirement”, not to mention, lean into our own relationship. 

Growing up I always loved dancing but never took it any further than the occasional dance club.  I also enjoy fitness and my husband, and I do our best at staying active.  Many years ago, I came across a fitness modality called Groove.  It combines the art of dance with movements that help with balance and strengthening, as well as coordination.  When the silence of my Winter season set in, I got quiet again.  When I did, an opportunity to get my license as a Groove Facilitator presented itself.  I reflected on what I had accomplished in my lifetime and what really brought me joy.  Whenever I dance, I feel the weight of the world just fall off my shoulders.  I knew I wanted to share that with others in hopes of them, not only finding joy in movement, but allowing them a moment to themselves to let go of the stressors of their world.

The Winter season may be the hardest of them all, but with a change of perspective – a reframing of your surroundings, it could be a seed for an amazing upcoming Spring.

Week-3: Fall – Letting Go with Love

“The leaf has fallen,

Returning, to dust – to home,

Someday I will too.”

-            Julie Moore, Author, I Am Their Voice

There comes a time while caregiving when we must come to terms with the end of life.  When you are in the Fall Season of caregiving, your loved one’s affairs should already be in order. 

Talking about what happens when your loved one passes away, or even when you pass away, doesn’t have to be taboo.  The longer you put off discussing it, more importantly, refusing to acknowledge it only creates new problems to face and deal with.  Those problems will not only be emotional, but financial and logistical, and quite possibly affect your family relationships. 

The Fall season is the time when the leaves begin to change color and fall from their branches.  Recognizing decline in your loved one, navigating their loss, and preparing emotionally and logistically for what’s next WILL help to ease the sting of that pain.  There will be pain; I can’t deny that.  But know that you can still let go with love through honoring their wishes.  That means you must ask them what their wishes are.

Start the conversation with “What would you like the doctors to know if you ever become incapacitated?”  This is where an Advanced Healthcare Directive form comes into play and should be completed as part of their estate planning process.  Incapacitation comes in many forms:

-            Your loved one could be having surgery and while under anesthesia a medical emergency pops up, the doctors need to know how you want them to manage that emergency.

-            Your loved one could be in a car crash and be unconscious or slip into a coma.  The doctors need to know if they want to be on life support or not.

-            Your loved one could have a brain injury, or a significant brain change that limits their ability to make decisions (like with dementia).  Your loved one, before the brain changes, needs to name someone as a Medical Surrogate to make decisions once those brain changes take effect.

That conversation should then lead into the next question of “What would you like me to do with your belongings, to include your assets like your car/home?”  This should result in a Last Will and Testament (at a minimum) or a Trust.

There are other estate planning documents that are vital when caregiving, such as Powers of Attorney.  I cover all of these in my book.  Speak to an attorney about what’s right for you and your loved ones.

Fall teaches us to let go with grace.  Each family member may have their own opinion of what the right decision is for your loved one; medically, financially, or physically.  Families tend to have the most disagreements when a loved one passes due to those opinions.  The only opinion or decision that matters when your loved one passes away is their own.  Following their decision about how they want to leave this world takes the decision-making process out of your and your family’s hand.  It’s painful, but necessary.

There is beauty in the release.

Week-2: The Seasons of Caregiving - Tackling Summer

“We don’t rise to the level of our goals; we fall to the level of our systems.”

– James Clear, author of Atomic Habits.

In James Clear’s book, Atomic Habits: An Easy & Proven Way to Build Good Habits & Break Bad Ones (which I highly recommend everyone reading), he provides a clear understanding of what systems are.  They are the combination of our daily actions (habits), routines, and processes.  It is the daily actions we take that determine if or when we reach our goals. 

In the heat of a “caregiving” Summer, having good systems in place will take away a lot of frustrations and, actually encourage motivation to keep moving forward.  With all the demands placed on the caregiver, routines/systems will be the roots of your endurance.

Caring for my -then- 57-year-old brother that had lost his ability to verbally communicate, his peripheral vision, and the overall ability to physically care for himself, I quickly established a daily routine that would encourage some sense of sanity for me, and an expectation for him.  This routine started before I went to bed at night:

1.       I cleaned the bathroom after bathing him then laid out his clothes for the next day.

2.       I cleaned the kitchen and set up the coffee pot and cups (tea for mom) for when I would wake the next morning.

3.       I straightened up the apartment and laid out my own clothes for the next day.

Prepping the night before allowed my morning to go a lot smoother and without having to “think” about what needed to be done when I woke up.  Everything was ready for me to pick up and go.

Anyone can apply this process, whether you’re a caregiver, a new parent or parent of three.  I remember when I had my first child and coming to terms with this huge responsibility of caring for another human being.  It was no longer just me and my husband! We had an infant that needed us; she depended on us.  I needed to set expectations for myself as well as for this little girl.  I needed to set my day up for success to keep my sanity and I needed to build trust with her.  I wanted her to know that not only was I her mom and he was her dad, but we were people that she could feel safe with and trusted that we would take care of her.

Caring for another person, child or adult, is more about them trusting that the person caring for them is going to protect them and keep them safe.  That includes providing a safe, clean environment for them to live and stay healthy in. When raising children I learned it was my responsibility to not only teach them the importance of a loving environment, but also teach them the importance of keeping a healthy, clean environment. It reduces exposure to toxins, promotes mental health, and encourages physical activity. It also teaches them responsibility, builds lifelong habits, fosters accountability, and develops respect for shared spaces. One day they will need to take care of the parent. When that day came for my mom and my older brother, it was my desire to provide that clean, safe space for them.

Establishing systems today will set your tomorrow up for success.

Week-1: The Seasons of Caregiving - Embracing Spring

Although our lives may resemble the cycles of nature, it won’t necessarily align or follow the same timeline. For example, depending on where you live, Spring can start around March or April. According to the Farmer’s Almanac, the first day of Spring happened this year on March 20, 2025 at 5:01 a.m. EDT, in the Northern Hemisphere while Autumn was starting in the Southern Hemisphere. Imagine being able to predict the seasons of your personal life, down to the minute!  But it doesn’t work that way. 

My Spring in caregiving began in June of 2020. I had just begun teaching for the Alzheimer’s organization and mentally preparing to care for my brother around August or September.  But his current caregiver at the time, our mom, had an emergency that not only required her to take a break but also faced the reality that she needed to be cared for herself. Which, in turn, meant I would be starting something new - caregiving - sooner than I had planned.

Fortunately, our family started having these tough, crucial conversations about how to help our mom with her cancer and take over caring for our brother, Clint, living with early onset Frontotemporal Dementia.  I just needed to reframe the hand that life was dealing me and shift my plans to an earlier date.  I had a good 30 days to get Clint settled in, if we can call it that, before mom moved down. I took advantage of that time alone for Clint to become familiar with his new surroundings, set up appointments with all new doctors, get familiar with his routine and what would become my new routine.  I made sure to make a list of all of his medications, the amount and frequency he was taking, but then also realized or discovered significant side effects of some of those medications he was experiencing.  I developed relationships with each of his doctors (primary and specialist) to ensure a clear line of communication was open.  With each appointment I kept a journal of what was said and if needed, shared information between doctors where they weren’t necessarily communicating with each other.  I was the go between.  I needed those notes from my journal.

My other siblings assisted mom with her move to my place. With “Spring” still in season, once mom was moved in, I then started with her routines and establishing new doctors and scheduling appointments, as well as transferring insurance policies to both of their new addresses.  She still had a home she left behind, so there was also ensuring those bills were being managed and paid.  Mom was able to assist with some of these things, as she was still able to perform all of her daily activities without assistance, unlike Clint. Although I was successful in this Spring season, my “Summer” was approaching fast.  

Spring is your opportunity to prepare for what’s coming.  Ensuring both of my loved ones routines were in place, from medical to insurances to estate planning, provided me comfort in knowing I would be ready to focus on their daily needs.  I realize this may not be everyone’s experience, as season’s of Summer or even Fall can rush in, and you are forced to do everything at once. For those of you in that predicament, I want to encourage you to lean into support groups.  All support groups.  But for those of you that still have time, I encourage you to take advantage of this time and opportunity to prepare.  You never know how quickly your life will be turned around, if not, turned upside down.

Week 4: Called to Prepare - Why Estate Planning Is the Final Gift of Caregiving

As this “Called to Care” series comes to a close, I want to talk about something that isn’t always emotional or inspirational—but it is urgent. And it's one of the most powerful ways we love and protect the people who depend on us:

Getting your affairs in order.

Because caregiving doesn’t just happen in hospital rooms or at the bedside. It also happens in courtrooms. In financial offices. In the quiet chaos that follows when no one knows what to do—because no one planned ahead.

I’ve lived it. I’ve had to be their voice when my brother Clint could no longer speak for himself because of Frontotemporal Dementia. I had to step in when our mother’s cancer returned and major surgery left her unable to advocate for her own care.

Let me be clear:
If your loved one becomes incapacitated, declared incompetent, falls into a coma, or is unable to communicate during surgery—without legal documents in place, your hands are tied.

The time to prepare is not when the crisis hits.
The time is now.

Here’s what every caregiver and every adult needs to have in place:

• Power of Attorney (for finances and healthcare)

• Advance Directives (also called a Living Will)

• HIPAA Release Form (so you can access their medical info)

• Last Will and Testament or Trust

• Designated Healthcare Proxy or Surrogate

• Documented funeral or end-of-life wishes

You don’t have to be an attorney to start these conversations—you just have to be brave.

Start by asking:

• “If something happened tomorrow, who would you want to speak for you?”

• “Do I know where your important documents are?”

• “Have we written it down so no one has to guess?”

It may be uncomfortable now, but it will spare your family heartache later. And more than that—it gives your loved one peace, knowing their wishes will be honored with dignity.

Caregiving is more than managing today’s needs.
It’s planning for tomorrow’s unknowns.

If you’ve followed this series and felt called to care, then consider this your next step:
Be the one who starts the hard conversations.
Be the one who makes sure the papers are signed.
Be the one who ensures your loved one is heard—even when they can’t speak.

That, too, is caregiving.
And it’s one of the most loving legacies you can leave behind.

Week 3: Purpose Looks Different Now. How Caregiving Broke Me Open—and Showed Me I Was Right Where I Was Meant to Be

I used to think purpose had to be bold, clear, and structured. After 30 years in the Army, I was used to knowing my mission. I had direction, deadlines, and the pride that came with seeing something through. But caregiving? It didn’t come with a rank. It didn’t follow a plan.

And yet, it has become the most meaningful mission of my life.

The truth is—caregiving broke me open. Not just physically from exhaustion or emotionally from watching my loved ones decline. It broke me open spiritually. It cracked me wide enough to feel everything: the fear, the frustration, the grief—and most unexpectedly, the joy.

I never expected joy to show up here. But it did.

It showed up when Clint got up out of his chair to dance to some great Disco music or R&B songs we both grew up listening and dancing to even though he couldn’t articulate or communicate verbally. It showed up in the small smile Mom gave me when I took her to Cracker Barrel to eat but then always ended up walking by the (sparkly) jewelry for her to buy another pair of earrings, even on days she couldn’t walk as sturdy and needed her walker. It showed up at church with Clint tapping to the sound of the music and momma seeing the son she remembered.

In those moments, something settled in my soul.

This was it.
This was purpose.
Not loud, not perfect, but deeply present.

I used to measure fulfillment by results—how much I accomplished or how far I climbed. But caregiving taught me a different kind of success: being still long enough to listen, staying soft when life felt hard, and celebrating wins no one else sees.

And those moments of joy? They were proof.
Proof that I was right where I was meant to be.

Caregiving reshaped how I see purpose. It’s not about doing more—it’s about being fully there for the people who need you most. And if you're reading this and feeling broken open too, please know that’s not weakness. That’s where your purpose begins to bloom.

My purpose now that my caregiving days are currently behind me is to bring awareness of the challenges that family caregivers live with daily. It is my hope that my book, I Am Their Voice, finds a worldly reach to encourage and assist other caregivers. It is also my purpose to educate and advocate for higher standards of care in nursing homes and more resources for families. If you’ve read my book, please leave a review on Amazon to provide other readers a peek into the content, what resonated most with you, and share the resources provided in the book.

Week 2: Was This My Calling? The Question That Wouldn’t Go Away

Caregiving didn’t tap me on the shoulder with clarity and calm.

It arrived in waves—unexpected, relentless, and emotional. And from the very beginning, one question followed me like a shadow:

Was this my calling?

There were hard days. Days when the weight of managing my brother Clint’s Frontotemporal Dementia and our mom’s stage-4 cancer felt unbearable. Days when I questioned whether I was strong enough. Days when I missed the freedom of retirement and wondered if this was really how I was meant to spend the next season of my life.

But there were also moments. Quiet, sacred ones. The kind that stopped time and answered that lingering question in a whisper.

One of those moments happened on a regular afternoon. Clint and I were riding around the yard in my golf cart. The breeze was soft, the sun filtered through the trees, and everything felt still. He reached over, touched my arm, and asked me to stop.

When I did, he looked at me and said, “Aren’t you retired?”

I nodded, “Yes.”

Then he asked, “You have a life… why take care of me? You need to live your life.”

His voice cracked under the weight of emotion. Mine did, too.

I looked at him and said, “I am living my life. You are my life right now, and I’m living it with you. You’re my brother—and you need me right now.”

He began to sob. Then, with tears streaming down his face, he whispered, “Thank you.”

In that moment, I felt something shift. A calmness washed over me. The question that had followed me so persistently—Was this my calling?—suddenly felt answered.

Yes. It was.

Not because I had chosen it. Not because it was easy.
But because love often looked like showing up, sacrificing, and staying present. And I knew—deep in my spirit—that this was sacred work.

Clint may not have remembered that moment in the days or weeks that followed, but I did. I carried it in my heart as a reminder that this chapter of my life was not a detour. It was not wasted. It was my purpose, unfolding.

If you’ve ever found yourself asking whether caregiving was your calling, I want you to know—sometimes the answer comes softly, in the stillness, in a shared moment that reminds you:
You were right where you were supposed to be.

Blog series - “Called to Care: Finding Meaning in the Midlife Caregiving Journey”

Week 1: When Life Rewrites Your Script

From Soldier to Full-Time Caregiver: The Unexpected Chapter of Purpose

They say life begins at 50—but I don’t think they meant caregiving, heartbreak, and grief all rolled into one. Yet for me, that’s exactly how this chapter started.

After serving 30 years in the U.S. Army, I had plans for retirement: travel, rest, maybe rediscovering a few passions I’d set aside while in uniform. Instead, I found myself back in the trenches—only this time, the mission was deeply personal.

Not long after hanging up my boots, my world shifted again. My marriage of over 20 years came to an end. I was emotionally raw, navigating the shock of divorce, unsure of who I was outside the roles I had lived for decades: soldier, spouse, and mother.

And then came the call to care.

My oldest brother, Clint—a proud U.S. Air Force veteran—was diagnosed with early onset Frontotemporal Dementia at just 54. Around the same time, our mom, Carol, received devastating news: her breast cancer had returned, now stage 4 and in her spine. Both needed care, and fast.

There was no blueprint. Just a decision: I brought them both into my home and became their full-time caregiver.

No more uniforms. No more certainty. Just day after day of managing appointments, medications, meals, emotions, and unpredictable moments of cognitive and physical decline. I had gone from Army operations to learning the rhythms of dementia care, from inspecting performance to inspecting pill organizers and managing bath and meal time. And truthfully? Some days, I didn’t know who I was anymore.

It wasn’t graceful. It wasn’t easy. But slowly, I realized something: life had rewritten my script, not erased it. All the years of leadership, service, and resilience had prepared me—just not in ways I had expected. I wasn’t fighting for a nation now. I was fighting for them—for Clint’s dignity, for Mom’s comfort, for the right to be heard in every hospital hallway and doctor's office.

This is the beginning of my story in midlife caregiving—not just about loss and sacrifice, but about finding strength when life calls you into unexpected service.

In this series, I want to explore the question I wrestled with in the dark moments:
"Is this my calling?"

Maybe you’ve asked yourself that, too.

Whether you’re just stepping into caregiving, or years into the journey, I invite you to walk with me as we look at how caregiving can break us open—and reveal purpose, even in pain.

The Emotional Earthquake — Grieving Someone Who’s Still Here

Receiving a diagnosis of early-onset frontotemporal dementia (FTD) is life-changing — not only for the individual, but for their loved ones as well. Beyond the medical facts lies an emotional reality that is rarely discussed: the experience of anticipatory grief.

Anticipatory grief is the deep sadness and mourning that begins long before physical death occurs. It arises as families watch the slow, often confusing loss of the person they knew, even while that person is still physically present.

The Layers of Loss

With FTD, the losses come in layers:

• Loss of shared memories and conversations.

• Loss of familiar personality traits and emotional connection.

• Loss of future plans and imagined milestones.

Because early-onset FTD affects behavior, judgment, language, and emotional understanding, families often find themselves interacting with someone who feels profoundly different. The shift can be heartbreaking.

In many ways, caregivers and family members are grieving two realities at once:

1. The gradual loss of the person as they once were.

2. The uncertain future they now face together.

Common Emotional Responses

The emotional toll of living with early-onset FTD can be significant. Common experiences include:

• Sadness and Depression: A profound sense of sorrow for both present losses and future changes.

• Anger and Resentment: Feelings of injustice, especially when the disease affects someone so young.

• Guilt: Wondering if more could have been done, or feeling guilty for moments of frustration.

• Loneliness: A sense of isolation from friends, extended family, and even the broader community.

It is important to recognize that these emotions are normal. Grieving while caregiving does not mean you are giving up — it means you are deeply human.

Strategies for Coping

While anticipatory grief is painful, there are ways to navigate it with care:

• Name the Grief: Acknowledging the emotional reality is an important first step. Naming what you are feeling allows you to address it rather than suppress it.

• Seek Support: Connecting with dementia support groups, therapists, or counselors who understand FTD can provide validation and strategies for coping.

• Honor the Person: Look for small ways to honor the individual’s essence — their humor, passions, or moments of connection that still shine through.

• Create Meaning: Journaling, art, advocacy work, or legacy projects can offer a sense of purpose and healing during a time of profound change.

Moving Forward Together

Anticipatory grief does not have a clear endpoint. It ebbs and flows, often resurfacing at milestones and new stages of the disease. By approaching these emotions with honesty, support, and compassion, families can find resilience even in the midst of loss.

While FTD changes so much, it cannot erase the love that underpins the relationship. That bond — even as it evolves — remains a powerful source of strength.

“I’m the One with Stage 4 Cancer—But I’m Still the Caregiver”

At almost 80 years old, Momma should have been resting between her chemo and radiation appointments—not lifting others up, cooking meals, or sorting through insurance paperwork for the people she loved. But there she was.

She had always been the one to step up. It’s just what you do in a blue-collar family. You don’t ask who else can carry the weight—you just carry it.

When her breast cancer returned, this time spreading to her spine, she may have thought life might finally slow down. That maybe, just maybe, someone would take care of her for once. But almost at the same time, her daughter-in-law began forgetting simple things—how to get home from the store, the way to make her favorite recipe, even the names of people she’s loved for years. Then, momma’s oldest son, just 54, started changing. Quiet. Frustrated. Lost. His doctors finally gave it a name: frontotemporal dementia.

So now, momma was not just living with terminal cancer. She became the caregiver—for both of them.

This is not a story of pity. It’s a story of reality—for our mom and for thousands of others.

Mom and others her age are the elder caregivers. They’re managing medication schedules while hiding their own pain. They’re attending doctor’s appointments for others while silently dreading their own. They are seen as the "strong ones," the dependable ones—but sometimes, no one asks how they’re really doing.

💡 Practical Insight:

If you’re an older adult caring for someone with dementia while managing your own illness, here are a few small shifts that helped mom:

• Use a daily whiteboard or a sheet of paper. List medications, reminders, and meals. It helps all of us stay on track, even on days when your body is too tired to explain.

• Ask one person for one thing. Stop waiting for people to “just help.” Have the courage to ask: “Can you bring dinner on Tuesdays?” or “Can you sit with him for two hours on Fridays?” Be specific.

• Keep a folder. One place for every medical paper, diagnosis, and prescription—for yourself and your loved ones.

These tips don’t fix the hard stuff, but they create moments of clarity in the chaos.

📢 A Call to Awareness:

The healthcare system doesn’t see people like mom. It assumes caregiving stops with age or illness. But for many, it never does.

We need caregiver support programs that include elder caregivers—the ones holding entire families together with limited income and fewer resources than ever before.

This blog series will follow our mom’s story over the next six weeks, not to shine a spotlight on hardship—but to show just how much heart, strength, and sacrifice lives in the people no one’s checking on.

Elders may be aging, but they’re still carrying the weight of others. It’s time someone carried them, too.

Week 2: Understanding Frontotemporal Dementia — More Than Memory Loss

Frontotemporal dementia (FTD) is a group of brain disorders caused by progressive damage to the frontal and temporal lobes of the brain. These areas are responsible for personality, behavior, language, and executive functioning — the very skills that govern how we interact with the world.

Unlike Alzheimer's disease, which typically begins with memory impairment, early symptoms of FTD often involve striking changes in personality, communication abilities, or behavior. For many families, these changes are confusing and distressing long before a diagnosis is reached.

What Is Early-Onset FTD?

When FTD is diagnosed before the age of 65, it is referred to as early-onset FTD. Some individuals may begin showing symptoms in their 40s or 50s. Because of the younger age of onset, early signs are often misunderstood or attributed to stress, mental health issues, or midlife challenges, leading to misdiagnoses or delayed treatment.

Early-onset FTD brings unique challenges:

• Many individuals are still working full-time.

• They may be raising young children or supporting aging parents.

• Financial, legal, and emotional impacts are often far more complex than in late-onset dementias.

Key Symptoms and Presentations

FTD is not a single condition, but rather an umbrella term for several related disorders, including:

• Behavioral Variant FTD (bvFTD):
  Characterized by changes in personality, behavior, judgment, and impulse control. Individuals may act in socially inappropriate ways, show apathy, or lose empathy for others.

• Primary Progressive Aphasia (PPA):
  Involves gradual decline in the ability to speak, understand, read, or write. Language skills erode over time, while memory may initially remain intact.

• Movement Disorders Associated with FTD:
  Some forms of FTD are linked with physical symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis (ALS), affecting movement, balance, or motor skills.

It is important to recognize that memory can remain relatively preserved in the early stages, which often leads families and even healthcare providers to miss or misinterpret the signs.

The Diagnostic Journey

Obtaining an accurate diagnosis requires a careful evaluation, often including:

• Detailed clinical interviews and history-taking.

• Neuropsychological testing to assess cognitive and behavioral changes.

• MRI or PET scans to identify brain atrophy patterns.

• Genetic testing in certain cases, as FTD can sometimes run in families.

Misdiagnosis is common. Many individuals with early-onset FTD are initially diagnosed with depression, bipolar disorder, or even marital problems due to the behavioral changes. This delay can be emotionally taxing and delay appropriate support.

Why Awareness Matters

Raising awareness about the early and atypical signs of FTD is crucial. Early diagnosis allows families to plan for the future, access specialized care, and make the most of available interventions. Although there is currently no cure for FTD, early intervention can help manage symptoms and improve quality of life for both the individual and their loved ones.

For more information on FTD, please go to The AFTD’s website: https://www.theaftd.org/what-is-ftd/disease-overview/

Week 1: A New Road We Never Expected

Hi, and welcome.

If you’ve found your way here, chances are you — like me — know the complicated, confusing world of early-onset frontotemporal dementia (FTD). Maybe it’s touched your family. Maybe it’s your diagnosis. Or maybe you’re just beginning to suspect that something isn’t quite right. Wherever you are in this journey, please know this: you’re not alone.

When we first heard the words frontotemporal dementia, it felt like someone had pulled the ground right out from under us. I’ll never forget sitting there, trying to process what the doctor was saying — something about personality changes, language loss, and no real cure. It didn’t make sense. After all, this wasn’t supposed to happen to someone so young, so full of life.

That’s the thing about FTD: it doesn’t follow the rules we expect from dementia. It sneaks in, not with forgetfulness at first, but with changes in behavior, mood, or speech. Things that are so easy to misread — as stress, depression, even just "getting older." It often takes years to get a proper diagnosis. Years of wondering. Years of second-guessing ourselves.

This blog series is my attempt to shine a light for anyone who is walking this uncertain road. I want to talk honestly about what it’s like to live with, and alongside, early-onset FTD. The heartaches, yes — but also the unexpected moments of beauty, humor, and love that this journey can reveal.

Each week, I’ll share pieces of our experience:

• How we learned to adapt to new challenges.

• How we found strength in unexpected places.

• How we continue to find meaning, even on the hardest days.

I am not an expert in medicine. I’m not here to give clinical advice. I’m here as a fellow traveler — someone who has faced the fear, the uncertainty, the exhaustion... and is still finding ways to move forward with compassion and hope.

If you’re reading this and feeling overwhelmed, let me say this clearly:
You are stronger than you know.
You don’t have to do this alone.
There are people who understand.

In the weeks ahead, I hope you’ll join me as we talk about all the pieces of this complicated, beautiful, heartbreaking journey.
Let’s walk it together.

Until next week!