Subject, Not Object: Seeing the Person Living with Dementia
After a lifetime of ups and downs, stretches of peace punctuated by hurt and alienation, I thought this was just the way it would always be. My encounters with my Dad would be superficial, guarded; he would never really see or know me. I surely did not anticipate this moment of incomparable sweetness.
We are sitting on the patio of the nursing home bathed in brilliant autumn sunshine, and my Dad asks, “How can I describe your work to people who ask?” I explain that I help people to find meaning as they age. “That’s so lovely,” he says.
I ask if he’d like to hear a melody I wrote, a blessing for growing older. “Yes, yes!” he instantly exclaims. As I sing the blessing, Dad’s attention is rapt; I feel his energy reaching toward me, almost as if he is jumping out of his wheelchair, he is so utterly present.
I stop singing, and we sit. Just sit. No words need to be uttered. We are both soaking up the sun – and the love – accessible and palpable in a completely unexpected way.
Moments like this one are not the focus of the recent PBS documentary, “Alzheimer’s: Every Minute Counts.” This carefully researched film addresses the very real economic and emotional costs dementia imposes on families and on our society as a whole. It documents the rapidly growing numbers of people with Alzheimer’s and related dementias, the problems they and their family members face as they cope with memory loss and declining functioning, and the dramatic pressures that this will place on the healthcare system in the future. But if you were to look to this film to teach you about the reality of dementia, you would know only about pain, loss, and economic cost.
Looking at my late father with this lens, you would see a bright, accomplished person reduced to a life of dependency and frailty. You would focus on the enormous price tag for four years in a nursing home. You would note the stress experienced by his wife as she faithfully cared for him for several years before this at home, and as she visited him daily, even as she also cared for her mother, who was living with dementia in another nursing home. You might see how sad it was for his children and friends to see this former public official now unable to say what day of the week it was.
But this lens would miss the whole picture, for here was a man who was growing and changing. With so much of the wounded and wounding personality developed over 83 years burned off, here was a soul exhibiting only love and gratitude. Here were healing moments, not one, but many.
We will be enriched if we widen our lens in looking at the realities of dementia. We can see people living with dementia as subjects, not objects. We can transcend our fear and dread. We can be more curious, less dismissive. Perhaps we can ask of the person with dementia:
- What or whom does he treasure?
- What gives her pleasure?
- What pains him?
- What does she want at this moment, or as she goes forward?
- How does this moment fit in the narrative of her life?
Despite the immense expense of caring for the bodies and minds of people with dementia, that caring is not enough. We also must tend their spirits. We, neighbors, relatives, community members and paid caregivers, can help them and their loved ones to have moments of meaning and joy. We can enable them to remain connected: to community, to nature, and to the texture of daily life. And as we do this, we will open ourselves to moments of wonder and magic, to being enriched as we walk with them.
Of course, not every person with dementia will transform as my Dad did. There is, indeed, profound pain and loss in this journey. But seeing people living with dementia as subjects, not objects, will enrich their lives, and ours.