Last December, as I was considering the position of Executive Director of Estes Dementia Day Center, I attended one of the Memory Cafés that take place monthly at St. Bart’s Church.
I came to observe this wonderful program where caregivers and people living with dementia attend for 90 minutes of activities, singing, games, and coffee and snacks.
Before it even started that morning, I was deeply touched by what I witnessed. One of the couples came in from the cold and wind. The husband gently took off his wife’s coat, then took out a comb from his pocket and combed her hair.
He then said, “There you go, sweetie. You look so beautiful.” She smiled up at him and said, “Thank you.”
Eventually, I followed them to their table and joined them for coffee. They had been married for 67 years. She was diagnosed with dementia 6 years ago. Such an endearing couple!
That same husband came to see me a few months later as we conducted an intake interview to have his wife participate in our program.
He sat across from me in my office and wept like a baby. The profound loss, the weariness, the grief of all that has been lost, the complicated family dynamics, the endless questions of what to do next…“When will I need to make big decisions regarding her care? “
All of this can be so overwhelming and stressful and places health concerns on the caregiver.
Of course, our primary purpose at EDDC is to provide a place during the day for our participants that is enriching, cognitively stimulating, and gives opportunities for music, movement, and art, all of which contribute to health and wellbeing.
Our secondary purpose is to support the family in any way we can.
In my role at EDDC, I have met some of the most courageous, strong, resilient, and amazing people that exist on this planet – those who are caregivers to their loved one who suffers with dementia.
Most are spouses, some are their children. Some have been walking this road for a few years or more. For others, the diagnosis is more recent. Regardless, the journey is not easy; not anything you are prepared for or are trained to handle. It is lonely, and sad, and unbelievably discouraging.
In my own learning path about dementia and its impact on family members, I desire to understand in a more personal way what caregivers are experiencing, what their needs are, and how we can be supportive and compassionate along this journey.
So, I reached out to one of our volunteers, Bob. I knew that Bob was volunteering with us twice a week, not because he was retired and needed something to do. He was giving back because one year ago, he lost his wife to Lewy Body Dementia.
His story, his journey, has had a profound impact on me and my need to understand so we, as a program, can be supportive. Here are some brief snippets of Bob’s story that he has given me permission to share.
“In 2023, I received the news that my wife had Lewy Body Dementia. I knew it was terminal, but I pushed it out of sight and just lived a few days at a time. That marked the beginning of the long, painful goodbye and the anticipatory grief.
By 2024, things had become significantly worse. Sometimes, she would leave the house and wander aimlessly. There was an incident with the stove cooktop. Some of the worst times were when she didn’t recognize me as her husband. The stress was so overwhelming that I often prayed to God to just let me die. Thankfully, many friends in our community helped us face the darkest moments brought on by the disease.
By the end of February 2025, I admitted her to a memory care facility. Her decline was fast, and she passed away on June 9, 2025. After a few weeks of planning the arrangements, the grief finally struck. The floodgates opened for the loss of my partner of 55 years. She still is the love of my life. All we had known since we were 18, was each other.
We both lost our identity: her because of a disease, and me because I lost the best part of me, which was her. Seeing her lose herself and sink into the depths of fear and depression shattered my heart.
To explain why I volunteer at EDDC, I must go back to the few months after she died. The person I was died with her. My empathy for others was off the charts, and it didn’t take much to get the tears flowing. God became more a part of my life, and I welcomed it.
I had seen the request for volunteers at EDDC in the church bulletin, and after the third time, I felt led to volunteer. The volunteer training EDDC provides would have helped me early on.
It wouldn’t have changed the outcome, but I could have made the last months she was home more bearable for both of us.”
My encouragement to you who are caring for a person with dementia: seek support. Find a support group. Our goal in the next few months is to offer a group to those caregivers in our program.
EDDC is here for you. You are not alone. There is hope for the journey!
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