Walking This Journey Personally: A Social Worker’s Letter About Dementia, Love, and Caregiving

Dementia is more than a diagnosis. It is a deeply personal journey that affects entire families emotionally, physically, and spiritually. As a licensed social worker and a founder of Veramazo Elder Care Concierge, I have guided countless families through the complexities of memory loss, caregiving, long-term care decisions, and the healthcare system.

But this year, dementia is not only something I support families through professionally.

It is something I am living.

This is a letter about my grandmother.
It is a letter about love.
And it is a letter for every daughter, son, and family member walking this road.

Her name is Martha.

She was born in 1940 in Ecuador. She is strong, elegant, fiercely tenacious, and deeply devoted to God and family. When she was just two years old, she lost her father and was raised by her mother, Carmela, who was a hardworking, resilient woman who modeled endurance and faith.

When my mother was eight years old, my grandmother went to the U.S. Embassy in Ecuador and did everything by the book to bring her family to the United States legally. She was determined to give her children opportunity, safety, and a future she herself did not have.

Once here, she worked in three different garment factories as a seamstress. Long hours. Exhausting days. She was the primary financial provider. She carried her children. She carried her household. She carried responsibilities that would have broken many people.

She was fierce.
She was disciplined.
She was protective.
She loved through sacrifice.

And now, she has dementia.

The reality of watching someone you love change hurts. Over the past year, she asks the same question within minutes. She sometimes says she is in Long Island when we are sitting in New Jersey. When we gently remind her where she is, she smiles and says, “Oh yes, I was there last week.”

Time folds in on itself for her now.

And what breaks my heart most are the conversations I miss.

I miss watching a movie with her and discussing it afterward.
I miss her absorbing the details.
I miss the sharpness of her thoughts.
I miss the back-and-forth exchange that once flowed so easily.

I miss her cooking.

I miss watching her cook and I regret not recording her cook and tell me recipes.

There is no polished way to describe this disease.

It is heartbreaking.
It is exhausting.
Some days, it feels profoundly unfair.

To the daughter, son, and family member who is caring for a parent with dementia: What you are feeling is normal, even the feelings that make you feel guilty.

Loving someone with dementia is one of the most emotionally complicated experiences a person can endure. It is grief and love existing simultaneously. It is responsibility and heartbreak intertwined.

You are doing better than you think you are.

Your presence matters more than perfect words.
Your patience matters more than perfect decisions.
Your love matters more than perfect caregiving.

There is something dementia cannot erase. Memory is complicated. Dementia changes how the brain stores and retrieves information.

Names fade.
Dates disappear.
Stories repeat.
But something often remains long after factual memory declines.

Emotion.

They may not remember the details.
But they can still feel that they are not alone.

And that feeling reaches deeper than memory ever could.

The exhaustion you don’t always talk about is real. Caregiver exhaustion is real.

This is ambiguous loss, grieving someone who is still physically here.

You may feel tired in a way that sleep does not fix.
You may feel emotionally raw.
None of that means you are failing.

Dementia caregiving is not a sprint.
It is a long, unpredictable road.

And no one should walk it alone.

This year, National Social Work Month feels different. For almost 18 years, I have stood beside families as their guide.

This year, I am also standing in their shoes.

National Social Work Month reminds me why this profession exists.

It exists because families need advocates.
It exists because compassion and dignity matter deeply in healthcare.

Because I am not only the professional guiding families through dementia.

I am one of them.