Tramel: From daughter to caregiver — my journey with Alzheimer’s and the lessons learned

Lolita Tramel

Submitted photo

Dementia is a thief. It steals memories, independence and, slowly, the person you once knew. I often say, with a diagnosis of dementia or Alzheimer’s, you lose your loved one twice — once, as you helplessly watch them transform into someone unrecognizable, and again when they pass away.

Seeing my mother struggle with Alzheimer’s disease was the most devastating and painful experience of my life. But being her primary caregiver was my honor.

My mother was a beautiful, vibrant soul. She was extremely organized, independent and she loved to cook. Growing up, everything in our home had a place and every bill was filed neatly in a cabinet.     

In 2018, I started receiving calls from family about her cognitive decline. I made the decision to relocate mom from Florida to Arizona. I was nervous but excited. My mom and I could finally live together again. I couldn’t wait to dive into her homemade Caribbean cuisine. I was looking forward to that sweet smell of stew chicken and red bean soup. 

It had never dawned on me that my mother no longer had the capacity to cook a meal. I had no idea of the road ahead and the challenges I would face. The woman who had once meticulously kept our home in order was now struggling to remember how to cook her infamous meals.

One day, my mother left the stove on and went to lay down. I was devastated. That moment was when the full weight of her condition became real to me. I realized our roles had reversed.

The mother I once knew morphed into a stranger. As the years went on, I grew older and she somehow grew younger. She began to depend on me for everything. She asked repetitive questions and couldn’t remember if she had showered or eaten.

At the time, I didn’t think to call the Alzheimer’s Association for help. I didn’t know how the various strategies to manage her care, and I didn’t realize there were community resources out there for people like me.

Why didn’t our primary care provider or neurologist share this information? As an experienced provider, I had no clue. I was completely overwhelmed, stressed and lost. I didn’t have anyone to call for help. I felt completely isolated.

There are countless dementia caregivers who are facing this dilemma every day, who have shared similar stories with me. That’s one reason I do what I do ― to ensure others find the help they desperately need.

The Alzheimer’s Association website is a terrific resource for educational materials and updates on new research. They also offer a 24-hour helpline. Here in Arizona, the Desert Southwest Chapter offers early stage programs, education and support groups to connect caregivers with each other. I advise families to peruse this site to learn more.

There are also a number of adult day health care centers in the Valley that not only provide hours of respite and peace of mind to the care partner but can be critical for the member in terms of recreational enrichment experiences.

Non-medical home care services like Hearts For Dementia can also offer families a lifeline with much-needed flexibility and relief. Whether it’s a few hours a day, full-time, or a couple of days per week, a trained caregiver can assist with daily tasks, companionship, personal care, mobility and more.

And now, thanks to the Centers for Medicare & Medicaid Services, no-cost healthcare support is available to those who qualify. Almost 400 participants across the country, including Hearts For Dementia, will build dementia care programs to increase care and improve access to services and support.

This new Medicare alternative payment model, called GUIDE ― Guiding an Improved Dementia Experience ― is a game-changer and big news. It can provide ongoing support for the many unpaid caregivers struggling to provide adequate care for their loved ones, and we’re excited to bring this to families beginning in July 2025.  

When do you call for help? That’s the question I get asked all the time. The day you begin searching for services is the day you receive the diagnosis. That’s the day you begin planning, researching services, and finding resources you will soon need. There is no time to delay.

I also tell caregivers to give themselves grace, savor the good days and be flexible as symptoms progress. Caregiver burnout is real. Seeking emotional support, maintaining your own health and prioritizing self-care is essential.

My mom, Wilma James, passed away last year. I hope that through my work, my mother’s legacy lives on, and Hearts For Dementia continues to embody her love, compassion and generosity.

Editor’s note: Lolita Tramel is a dual-board certified family and psychiatric mental health nurse practitioner, and founder and CEO of Hearts For Dementia. Reader reactions, pro or con, are welcomed at AzOpinions@iniusa.org.