Mom’s Not Home
David R. Weiss – July 14, 2021

NOTE: This is a “TMI Tuesday” post in which I reflect on my Mom’s long slow descent into dementia. This is, of course, rich terrain for theology, but I come here today simply to voice feelings. Theology may come later; this is just raw experience. Yes, I have access to resources and support. As I said in my last “TMI Tuesday” post, expressions of solidarity, appreciation, insight, are welcome. Unsolicited advice is not. From birth to death our lives are framed by pathos. We all take a turn in this space, and while we’re often taught to keep our aches to ourselves, sometimes the better part of valor is actually less discretion. That’s my choice today.

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Mom isn’t home much these days. True, she rarely leaves the house at all anymore. Dad takes her on a daily ride past the lakefront. And she still, albeit rarely, goes to church on a Saturday evening. But beyond that, she spends almost all her time inside the house. But not home.

Alzheimer’s has left her memories in tatters. She still knows her childhood street address but no longer knows her grandchildren—and occasionally wonders who the man is that shares the house with (it’s Dad, her husband of sixty-plus years). Her personality is a dim shadow of her former self: still gracious and soft-spoken, but humor only confuses her, reading is a lost cause (each page is lost to memory the moment she turns to the next one), and conversations run about three sentences max. Her sense of purpose is all but gone. She meanders through her days on the last vestiges of rhythms she once helped create, now maintained by Dad but slowly collapsing as well.

She will not recover. Neither will I.

Grief for someone being unmade by dementia is itself a type of madness. And one painfully specific to the relationship. I am her son. My sisters have their own maddening grief. As do others in her extended family, most of whom will never see her again. As do friends from church who knew her in years past and may see her on that rare Saturday evening when she joins Dad at church … as the second most holy ghost in the building. Dad’s grief is beyond my ken. He shares her life 24/7, which is to say he dwells in her absence. All. The. Time. God help him.

I know these other griefs exist—including yours—but mine is the one I can bring words to.

I’ve lost count of the number of “funerals” I’ve held in my head and heart—usually in the days following my most recent visit—as I bid farewell to the latest bit her self that now seems locked behind a door in her mind for which there is no key.

At 87 (next month) she still looks like Mom. A step slower, to be sure. A bit less kempt. And several hours slower to rise. But were you to see her through the front picture window, sitting in her chair by the doorway, doing a simple word puzzle or dozing (her two most common pastimes) you might brighten and think to yourself, “Why, look, Carol is home today …”

You would be wrong.

Among the funerals I’ve held are these. Long letters from Mom that wrapped me in the details of her day. Gone, for good. Shorter notes reflecting (in retrospect) her waning ability to compose sentences. Gone, for good. Newsy phone conversation catching up on family events. Gone, for good. Family games, the cheery glue that bonded us as kids and lasted into our adult years. Gone, for good. Thirteen, the last family game (a card game) that Mom could keep up with. Gone, for good. Shared baking projects (the childhood seed of my love for baking). Gone, for good. In fact, any baking or cooking. Gone, for good. Late night chats (beginning in college, carrying forward for decades) during which we (seriously!) sought to mend the world and patch our own lives long after Dad went to bed. Gone, for good. Shorter, lighter chats outside in the glider. Gone, for good. Curious questions about my children’s lives. Gone, for good. Recognizing their faces in photos. Gone, for good. A welcome hug when I walk through the door. Most recently, gone, for good?

That phrase, “for good,” shows how dementia wrecks language itself. Here, having twisted the words to the breaking point, “for good” means, “forever—for worse.”

Each instance earned its own eulogy delivered silently in my head while reverberating thunderously in my heart. Had she died tragically in an accident or suddenly by stroke, I would’ve lost all those precious things at once. As it is, much of the past decade has been keeping, not a bedside, but a life-side vigil as these things and countless more, each a facet in her dazzling diamond self, is ground away. For good. Forever. For worse.

And yet Mom remains. A Schrödinger’s cat: at once there and not there. Except, while Schrödinger postulated his cat’s ambiguous precarity to make a point, Mom’s ambiguous precarity is not postulated, it’s incarnated. Daily.

In a series of arguments that makes the mind spin, Buddhists press the question of a persisting self: in a world of ceaseless change, can any of us lay claim to a continuous self? Mom, in her lived existence, presses the same question but it’s my heart that spins, lurches, breaks, crumbles.

How much of her is still there, simply hidden? How much is truly lost? And is there a tipping point beyond which “she”—who was in turns child, teen, collegiate, newlywed, teacher, wife, mother, mother-in-law, grandmother, and so much more—is there a tipping point shy of her last breath when “she” is no longer there at all? And would that make any difference?

I don’t think so. I think she remains worthy of compassion, kindness, care—and love—even amid this grief and these questions. Her priceless dignity persists as long as she does.

But I dread the number of funerals I’ll hold in my head and heart between now and then. And some days I wonder what I will have left to grieve when she finally dies. Because I have already grieved so much. And I am honestly exhausted from grieving.

We don’t understand the intricate weave between mind and gray matter, between synapse and self, between beating heart and being home. It’s true, by all appearances, Mom is (mostly) no longer home. Unmoored from the very meaning she made across her life, now her very self is held (mostly) by the hearts and hands of those who partnered with her in that meaning across the years. She is fortunate to have so many determined to hold her so well. Not everyone does.

Still, this slow-motion grieving is its own madness. I will survive her dying. But I will not recover. I am learning things about grief, about humanity, about myself that will not be unlearned. And I fear … I trust … that this learning will be needed again. By me. And by you.

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David Weiss is a theologian, writer, poet and hymnist, doing “public theology” around climate crisis, sexuality, justice, diversity, and peace. Reach him at drw59mn@gmail.com. Read more at www.davidrweiss.com where he blogs under the theme, “Full Frontal Faith: Erring on the Edge of Honest.” Support him in writing Community Supported Theology at www.patreon.com/fullfrontalfaith.