The Grace of Dimentia by Sara Bensman

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Last summer I took the Conscious Dying Institute Doula Certificate Training in Asheville.  I don’t know why I took it. I didn’t really plan on changing careers and I have no previous experience working with dying people.  I just felt drawn to understand death better in a deep, personal, and positive way. I knew that I wanted to be prepared for the deaths of my 80 year old parents and aging friends and family members.

At that time, we were seeing signs of my father’s Alzheimer's, but we were all surprised by the speed with which it progressed. One day he’s arguing politics over dinner and the next he doesn’t remember the name of his favorite (and only) daughter.  In between my mother, brothers and I make decisions about moving him into and then rapidly out of an assisted living facility, transitioning to their winter home, medications to calm his hostile anxiety, outside care assistance, and today, what to do now that he’s becoming incontinent.  

One of the most useful concepts that came from the training is that I can’t “fix” death. I can ease or honor it, but I can’t stop it from happening.  My role is only to love him and experience the fullness of that love while I'm with him.

My father gets agitated, experiencing the need to understand or control something that he no longer has the capacity to control or understand.  His agitation unsettles me and I become anxious, worrying about how I can save my father from this humiliation and frustration he is facing. I suspect that beneath that, the ultimate cause of both of our anxiety is his impending death death. Then I remember Gregg saying in the training Everything I’ve identified as healing is release.  

The first time I experienced this was when I had taken my dad out to sit by the pool.  I coaxed him down into the unreasonably low chaise lounge while he grumbled and looked wearily at me, one eye squinting from behind his thick, smudged glasses.  When I finally managed to settle him down and cover his face with his hat, I pulled my lounge chair as close as I could get to him. Then my Type A, physician father and I breathed together quietly while the sun warmed our bodies and we listened to children playing.  Eventually, he let out a long sigh. “Ahhh… this feels good.”

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I don’t remember ever hearing my father take peace in the present moment before.  This was new and it was utterly beautiful that I got to share it with him. I’m learning to release my tension about this whole mess and help him release it too.  I figured out that I can just look at him and smile that “Daddy, I love you smile” and he relaxes. We are healed by the calm that we both feel in that moment.

In counterbalance to the notion that I don’t have to fix anything is one of the my favorite principles of the Conscious Dying Institute: increase the dying person’s beauty, pleasure and contentment.  I feel certain that within that rapid succession of decisions to be made and problems to be solved, I would have neglected to adhere to this obvious human desire if it hadn’t been pointed out to me in the training.  I might have busied myself with forms, complaining and doctor’s visits and forgotten to enjoy this time with my father and allow him to enjoy his time with me.

Initially I was confused when he started losing his ability to articulate his wishes accurately. With Alzheimer's, it’s tricky.  Do we respond to what he's asking for now or what he wanted pre-Alzheimer's? But then I realized that my family knows exactly what my father wanted with his final days, weeks and months.  We know what he valued (love) and what he cared about most (family). The training emboldened me to initiate conversations not only about Dad’s care but about his death. And this delicate teasing out of who my father was and what he wanted is another point of grace this disease is providing.  I’ve never felt closer to my brothers and my mother as I do now. Another win for Dad.

Generally, I’ve been able to navigate the different situations that arise along the way because I have a pretty clear understanding of my role: to help my father execute his wishes and to bring him beauty, pleasure, contentment and peace.  When we get lost trying to solve the problem of his demise, I can bring us back to those core principles and remind us all to enjoy the time we have with him.

All teachings converge for this departure

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Sara Bensman is a mediator and consultant specializing in conflict resolution.  She supports individuals, couples and groups moving through conflict with dignity and grace.  Her reflections on divorce, co-parenting and effective communication can be found at www.sarabensman.com/blog/.