The Soul of Dementia

By Cari

It seems that everywhere around me, there are articles on aging, Alzheimers Disease and Related Disorders (ADRDs), reimagesminding me that the clock is ticking.  Dr. Weil’s Tip of the Day enumerates things I can do to lower the probability of developing ADRDs, such as keeping active, using healing spices like turmeric and ginger, ingesting low dose aspirin and omega-3 rich foods like salmon and walnuts, and generally eating fresh fruits and veggies rather than processed, chemical-preserved and packaged mystery stuff. OK. I’m home free! I do that. Then he hits me with the fact that when (or if) I reach 85, I’ll be in an age group in which 50% of my peers have some form of dementia. Whoops. I have a 50% chance of developing ADRDs as I get older?  Yep. Age is one of the risk factors.

403778Of course, I’m still a youngster compared to my hospice patients, most of whom are in their late 80‘s, 90’s and 100’s. I see them and observe the diminishing capabilities, both physical and mental, as the weeks go by. I thought about them when I was doing an online continuing ed course on ADRDs recently. It talked about the many kinds of dementia-related disorders, including vascular dementia, stroke-induced dementia, Lewy Bodies dementia, Parkinson’s, Huntington’s, etc. Then, there are other factors that may appear as  dementia but can be improved or even resolved, like those related to poor nutrition, alcohol and substance abuse, metabolic disorders, infections, medication reactions, and head injuries. There is also a genetic component, of course, a risk factor related to having a member in your immediate family with Alzheimers.


So, what happens to cause the dementia? There is something that occurs to the neurons (electrical communication) in the brain that contributes to ADRDs, a protein plaque called beta-amyloid and another protein gone awry, tau tangles. These seem to be the culprits, at least in Alzheimers.  There are medications which can slow the progress of the disease, so early detection is important; and there are, in addition to doctor-patient behavioral/intellectual questions and tests, other diagnostic tools, like the PET scan.

All of this talk about ADRDs can create a feeling of helplessness and anxiety as those of us in the second half of life question, “Who might I become or who might my loved one become if diagnosed with Alzheimers disease?  How will my relationship change with my loved ones? What will it be like to be inside a body, still present in this world, but unable to communicate like I once did, if at all? What happens to my spirit? Where is my soul when I become deep in the throes of this disease?”  What models and guides can we look to for solace?

We’ve probably all heard of Justice Sandra Day O’Connor’s resignation from the Supreme Court to care for her husband, diagnosed with Alzheimers disease.  And, his romantic relationship with another patient in the facility where he was cared for.  She seemed to handle it with grace and gratitude for his comfort and joy, but it would seem not an easy thing to do. Maybe part of holding the tension in life between joy and sorrow and using this tension and the journey to become whole as individuals.

Another public figure, Glen Campbell, recently revealed his diagnosis and journey as he progresses into his Alzheimers disease.  He wrote a song to his wife called, “I’m Not Gonna Miss You.”  (See link to video below.)* It’s one person’s way of coping with the diagnosis and knowledge of the progression of the disease.


I’m still here, but yet I’m gone

I don’t play guitar or sing my songs

They never defined who I am

The man that loves you ’til the end

You’re the last person I will love

You’re the last face I will recall

And best of all, I’m not gonna miss you.

Not gonna miss you.

I’m never gonna hold you like I did

Or say I love you to the kids

You’re never gonna see it in my eyes

It’s not gonna hurt me when you cry

I’m never gonna know what you go through

All the things I say or do

All the hurt and all the pain

One thing selfishly remains

I’m not gonna miss you

I’m not gonna miss you.

To some–maybe most–the sentiments expressed in Glen’s song seem sad, but, after journeying with many Alzheimers patients and witnessing moments of lucidity and deep connection, both between the patient and me and the patient and a spouse or other family member, I choose to see the joy in them. I don’t think the words mean that the person or the relationship is completely gone. Nor that they don’t miss their loved ones in a way they can no longer express. Alzheimers patients may ultimately lose the ability to speak, or they may say things that are jumbled, they may require assistance with the most elementary of daily tasks, they may even have behavioral issues and do things that require protecting them.  After all, we must remember that the brain controls all of the body. And, I unquestionably believe that there remains an accessible beautiful soul within that changing person, despite the tau tangles and faulty connections between neurons.  And, don’t we all change as we go through life?  Even as Justice O’Connor’s husband, who remained available, albeit on a different level?

images-2-1One could reframe Glen Campbell’s song, and I will venture to do that, as a preparatory chant for his wife, family and him as he expresses his fears and models embracing all the unknown changes which are part of his humanity, changes that will lead to his wholeness and completeness as a human being on the journey of Life, even as his body deteriorates.  Even as the disease ultimately will result in his death. Aren’t we all going through that deterioration and return to the stardust from whence we came?

My personal experiences affirm this different way of hearing Glen’s words and my belief in the necessity of living life to its fullness, knowing that feelings show through the tau tangles at times and the soul remains despite the physical deterioration. Just this past week, I visited a hospice patient who at the first visit was completely withdrawn, never opened her eyes, had no reaction or response to multiple members of the hospice team.  On this second visit, I sat alone with her stroking her hair, telling her she reminded me of my grandmother, singing one of my favorites, “How Could Anyone Ever Tell You,”**  and saying, “I’d love to see your beautiful eyes.” She opened them and kept them open for a period of time while I continued to talk to her. A small gesture, but a sign that we were connecting. When I reported this to a family member, she was astonished as the patient had not opened her eyes for a long period of time. It took my being willing to sit mindfully in the presence of apparent disconnect and wait for the soulful connection that occurred. She was in there, living out the rest of her life.

I sat with another patient and his wife as she initiated and he responded to kisses and touch, and she told him how much she loved him. He died a few days later.  I had spent time alone with this patient on previous visits, and he was always receptive to my holding his hand, answering simple questions, appropriately tearful at times, making intense eye contact which seemed to pierce my soul. He may not have been able to articulate that he missed his wife, but he definitely  articulated in his own way that he yearned for that deep soul connection and human touch.  He missed it when it wasn’t there.

One of my favorite patients was a woman diagnosed with early Alzheimers, long before I met her several years ago. She was slightly younger than I and when I heard her story from her family, there was a lot of transference on my part because of the similarities I saw in our life narratives. I would sit by her bed, she would smile, often becoming anxious at some point in the visit, but easily redirected and comforted with assurances that she was safe and loved. She spoke what seemed to be unintelligible phrases or words that didn’t make sense to my left brain. Often, we would sit in silence for a period, and I would just hold her hand or touch her on the shoulder. I learned from her and other patients with dementia that I don’t need to understand everything with my rational brain. She always made good eye contact, but eventually she reached the final stage of the disease when she was no longer able to eat. Yet, even then, there were times when our eyes and souls connected. When I told her I was leaving and would return to visit again, that I loved her, she would say, “Thank you.”  It was my pleasure to accompany this woman and her family to full completion of her life.

The truth is we will all die of something. Treatments and cures will continue to be discovered for many diseases.  Life expectancy has increased and continues to increase for the new lives that comes into this world. Science may extend our health-span–our years of healthy living–in addition to our life-span–the number of years–with drugs and other treatments. We can choose how we live and how we treat our environment, which can also impact the number of healthy years of living.  But we cannot stop the clock from ticking, the calendar from rolling like one of those 1950‘s movies. Whatever comes to each of us, it is part of who we are. How we accept it and live it is also part of who we are. For those of us now in the second half of life, I can only reflect upon what  Jungian analyst, James Hollis has said:

Life is not a Place but a Journey, not an Answer but a Question. 

What Matters?  Perhaps only Compassion & Imagination.

* Connect to video to hear Glen Campbell sing this song:

** How could anyone ever tell you
You were anything less than beautiful
How could anyone ever tell you
You were less than whole
How could anyone fail to notice
That your loving is a miracle?
How deeply you’re connected to my Soul…

From “How Could Anyone” Music & Lyrics: Libby Roderick

Cari D. Dawson, MTS, MA, JD, BCC


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