Caregiver Cheer

Oh, Wow

“Oh wow. Oh wow. Oh wow,” were the last words of Steve Jobs according to his sister Mona Simpson, who was at his bedside when he died. She was certain he had a vision of something spectacular and took comfort in his wondrous exclamation.

As my father drifted in and out of consciousness during his last days, he remarked several times that he wished he could express what he was seeing. After a life fraught with tension and dissatisfaction, he was finally relaxed, calm, and at peace.

It’s a story undoubtedly repeated daily across the globe, but I am not interested in the tales of white lights and reunions with loved ones that others who have had near death experiences tell. I am interested in their willingness to be disengaged from our world. 

We often talk about how difficult it is to get the attention of people with advanced dementia. We talk of them being “in their own world,” as if it’s a bad thing, but is it? My friend and colleague, Roseann Kasayka, PhD, before dying prematurely, was doing some research into the implications of the strong similarities she saw between the brain scans of Buddhist monks in deep meditation and the brain scans of people with advanced dementia. Might it be possible that the reality of their dementia was a form of deep meditation, too? Were they in a better place, one where our reality had neither meaning nor value?This memory of my friend’s initial research came to mind because of an article by

Gisela Webb, Associate Professor in the Religious Studies Department at Seton Hall University, South Orange, New Jersey, which was sent to me recently. She reflected on the experience of being observer and caregiver for her mother over the 16 years she lived with Alzheimer’s disease, and wrote www.crosscurrents.org/webb.htm

I call Alzheimer’s the great unlearning, because it is clearly an unraveling of mind, language, and former knowledge. But in my experience, there is a center, or centers, of apprehension and experience (such as humor, intuition, and emotion) clearly intact much longer than mind and language. The nature of Alzheimer’s decline suggests to me . . . the reality of some deeper knowing/knower. Therefore, it supports the ethical mandate to honor that deep and abiding part, or ground, of the person . . . I wonder if what we see in Alzheimer’s disease is a kind of return to our origins — an Edenic pre-self-conscious, pre-dualistic state, prior to separation and shame.

Ms. Webb suggests that the training we provide to family and professionals about Alzheimer’s disease (as well as related forms of dementia) is almost entirely about “care management” – how to handle situations and responsibilities – and believes we ought to focus instead on the spiritual essence that remains in the person.

I agree. The first step is recognizing its existence. But then what? What are your ideas?