I met a lovely woman not much older than me in a coffee shop. She said something humorous, and we began a conversation that emotionally moved me because she was quite open with the fact that she is in Early Stage Alzheimer’s disease. She carried it well and very lightly, and shared her personal story with me quite eloquently.
In Monterey, I volunteered for too-short-a-time with the Alzheimer’s Association as a facilitator for a support group for people with Early Stage Alzheimer’s. The people in our group were mostly younger, ranging from 54 to 78, with three younger than 60. So, they were not just Early Stage, but also Early Onset. I say “too-short” because life changes brought me away from that work, and I felt very incomplete about it.
There are lots of sobering statistics and valuable information that are readily available at the National Alzheimer’s Association, with great advice for PWD’s (People with Dementia), and their caregivers. I have a somewhat different perspective to share.
Everyone in our Monterey group had clearly life-altering diminishment in their functional capacity. And yet, each person could be so acutely Present emotionally, and so aware of what was happening in their life and to their life.
One common thread in our conversations was the perceived stigma attached to the dementia. Very painfully, each described the experience of being stigmatized by the disease, as though they were now second-class citizens that are essentially written off by society as a hopeless case. This was what always brought forth the most visceral emotions, almost more than the experience of loss of abilities.
This prompted me to teach meditation to our group. In guided meditations, I would begin by having us find a place of calm centered Being-ness that existed separately from the false perceptions and judgements of others, and we would focus upon breathing in Self-Love, and owning the Truth that the dementia is a disease that is affecting their life, but that they could experience the Essence of Being entirely separate from the disease. I was always surprised that attention-span was not a problem. The group settled in comfortably for 20-minutes, and would emerge feeling a very peaceful and gentle sense of True Self Realization.
I have not a shred of evidence to support this, but my hope was that developing a calm centered sense of True Self could possibly be an emotional space that could continue to be accessed as dementia progressed, and language was lost. We have no way of knowing…in one sense, it feels naive of me to think this, because Alzheimers literally destroys the brain, and destroys different regions for different people.
On the other hand, as central as brain function is to our experience of life, Unique Self teaching is that we are each an irreducibly unique expression of All That Is…that we are multi-dimensional beings with an existence prior to this body, and that continues after this body stops serving us.
Each Person With Dementia is a Unique individual with a full and complex life story, and they are now faced with the frightening prospect of losing different capacities for cognition or speech and the ability to care for themselves. Alzheimers dementia typically progresses over 10 years or so. This brain disorder, which is affecting so many in our society, does not in any way reduce the Inherent Worth and Beauty of each individual, each Unique Self, as they journey into aspects of Being that leaves us behind. They deserve our respect and our love…they are not separate from us…they are us, or our families, or our friends…each person a Unique Self, a Unique Soul…a Unique Self that continues independently of all disease.
I hope our culture learns to move past our fear of dementia, or our ignorance of it, and be able to honor the inherent worth of each person afflicted. I remember my own fear of dementia because as a young boy, by grandfather suffered a stroke and lived with post-stroke dementia for 15 years. It was definitely not an easy journey for my grandmother or anyone else in our family to see this gentle man, violinist and music teacher to lose his capacity. It wasn’t until later years that I even identified this as a carried fear from boyhood, and learned how to be with People with Dementia without feeling uncomfortable.
Indeed, for family caregivers, it is a challenging journey. If one of your loved ones is diagnosed with Alzheimer’s, it is best to contact your local Alzheimer’s Association for early support and education.
If one of your friends is affected, it is a beautiful gift to maintain contact, and learn to Be Present with someone who has diminishing memory and capacity. Trust me, I can assure you, not cutting off from friendship is a beautiful gift of loving humanity that will also give its gift to you. There are many ways to offer useful support, and you will be able to find a way to do so without having your life consumed, which is one fear that may cause friends and relatives to withdraw.
There are many excellent books on Alzheimers. One that I particularly enjoyed on exploring the deeper dimensions of loving a person with Alzheimers disease with a psycho-spiritual perspective is “Ten Thousand Joys and Ten Thousand Sorrows” by Olivia Ames Hoblitzelle.
My coffee companion today is such a vibrant soul, soon to move out-of-state to live with her daughter. I feel very happy for this serendipitous encounter with a fellow traveler, and to be reminded of our common humanity in the face of a disease that is increasingly woven through our aging population.