“To love a person is to learn the song in their heart, and sing it to them when they have forgotten.”
- Arne Garborg
The word “dementia” describes several diseases that affect the ability to perform daily activities and thought processes. Dementia destroys nerve cells, damaging the brain. It deteriorates cognitive function beyond normal aging. It impairs short term memory, progresses over time, and affects older populations, especially women. It is the seventh most common cause of death around the world and a major cause of disability/dependency in the elderly. In 2021, fifty-seven million people were diagnosed with dementia worldwide and there are approximately 10 million new cases each year. It has serious psychological, social, and economic implications for the person diagnosed as well as their caregivers. The risks of developing dementia are age (over 65), high blood pressure, high blood sugar, overweight, smoking, drinking excessive alcohol, inactivity, social isolation, and depression.
Beyond the facts and statistics, the person with the diagnosis of dementia is a soul that came in with gifts and talents in the pursuance of their soul-contract. The dementia is one part of a well lived life that doesn’t define who they are. Souls embody a life, forgetting they are souls here to have a human experience. The idea of dementia can present a sort of cognitive dissonance. The soul, having forgotten its soul essence, appears to now be forgetting its human existence. What may feel heartbreaking is just part of the bigger spiritual picture. During this chosen lifetime, what is most important is to honor the soul in its humanity and chosen lessons with dignity.
Many of us have experienced dementia first-hand. My father was diagnosed with dementia in 2015 and we had a ten-year journey with him. My dad, Charlie, an example of unconditional love, persevered through loss and flourished through love. He grew up against a backdrop of the NY projects with his brother and a single mom. He grew into the man he was meant to become despite hardships and the losses along the way. He lost his mother while serving in Korea. He lived alone and put himself through college upon his return.
My dad became a chemist but was open to spiritual topics and loved the arts. Not only did he read books on assorted Godly and metaphysical topics but went with me to classes in hands-on healing and meditation. Art classes supported his lifelong hobby of painting and sculpting. He was a chemist, metaphysician and artist that tended his garden, fixed our cars, plumbing, and electric. He had a long list of skills and talents that he learned from many he met along the way. His soul shined as a man of character, faith, a veteran, a dedicated family man, helper and lifelong learner. In his presence we felt safe and protected.
He never forgot his roots, having immense gratitude for the blessings he received along the way and for the people that loved him. My father rarely said an unkind word about anyone. He had the patience of a saint and the kindness to match. Even with dementia, he never forgot to say “thank you” or notice a kindness extended to him. “I love you” rolled off his tongue without hesitation, especially to my mom who he made clear to everyone was the love of his life even after 73 years.
We were lucky that ten years into his diagnosis, he remembered who we are when we walked in the door even if we had to repeat some things he’d forget. He always showed concern for our well-being, asking if we were ok and if he could do anything to help. He asked for little and gave unconditionally. His “dad” jokes, kindness, and overall good nature were legendary and he blessed us with a lifetime of empathy, understanding, patience, creativity, intelligence, mentoring, forgiveness, and unconditional love.
Dementia has many faces. It can be fast or slow moving, inconsistently consistent, confusing and scary. Caregivers struggle with these changes as their loved ones change and become more vulnerable. Remembering the soul that is navigating this human experience of forgetting challenges us. It humbles us into patience and understanding what is not always easy to understand. It reaches into the sacred space of our own mortality, shaping perspective and, if we’re lucky, soulful awareness.
My dad is one of many with a dementia diagnosis whose soul kept shining through no matter the circumstances. Somehow, he was able to love unconditionally even in his vulnerability, without bitterness or expectation. The timing of his passing was our soul-contract and the lesson showed up for me this way - In this world of challenges and unexpected change, hold onto love, gratitude, and each other. Be a “Charlie” no matter what.
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