Enter Mourning

“Your brother just called from the hospital. Your mother’s – “
I still can’t remember what word she used next.
Over the past three years, I had struggled to understand, to accept and to be there for Mum as dementia stripped her ability to remember, to navigate her car, to dress herself, and, finally, to speak in whole sentences.

For care-giving family members, there’s often a choice to be made: to enter fully into the experience of what an aging parent/spouse with dementia is going through, or to stay on the fringes, being dutiful.

At some point, taking care of my aging mother stopped being an imposition, or even a series of tasks I managed with some semblance of grace, and became an experience that changed my life. It opened me not just to the unknown but to unknowing as a way of living, simultaneously letting go and letting in.

Ready to sew some voluptuous new fabric, I trawl the pale thread off the spool, channel it smoothly through the loop and begin the tricky descent that will lodge it invisible between the shiny chrome disks furnishing tension in my sewing machine. Then the world seems to tilt, and I’m not sure where the line goes next as a wave of grief engulfs me, the fact of Mum being dead nearly four years seemingly gone in the flash of my forgetfulness. I start again, wondering if Mum herself did the same thing, …

Was Mum on the verge of something awful too? Was she getting Alzheimer’s? The prospect terrified me: the mad woman in the attic, the door locked and me alone in there with her, trapped and unable even to scream. That’s what I was afraid of, so afraid that I couldn’t look Alzheimer’s in the eye.

I didn’t even contact the Alzheimer’s Society until after Mum was dead. At the time, too, the fear was for myself: wanting to protect myself against Mum, and the possibility of her hitting out at me.

That’s what defined the disease in my ignorant mind, not the sad unravelling of a daily existence: the difficulty in remembering your own telephone number, the names of old friends and family suddenly beyond one’s reach.

Clearing away the personal baggage, unresolved resentments, unexpressed regrets is as necessary as clearing out the family home.

For me, grieving a death begins well before the last breath; at least, it can. It begins at the point of contact, where and when you cross into the fullness of the experience, not just the circumstances of what’s happening. Mourning commences when you begin to pay attention, starting perhaps with what blocks the way. …

Mum’s crumbling capability with words, matched perhaps by my crumbling expectations, was also a medium of transmutation, bringing both of us into a new way of relating to each other.

An old way too, in the sense that we were tapping the primal root of what human communication is all about: the bedrock rhythms of expression and connection, as the common root word for “communication,” “communion” and “community,” meaning “to share with” suggests.

It’s so important to face facts and to shoulder responsibilities such as arranging for power of attorney for financial affairs, for medical care and for personal care. It’s so important to have some “advance-care directives” in place, a living will to guide medical decision making when dementia has robbed the person of the necessary cognitive ability to decide for him or herself. It’s also part of the journey, its own place and time for mourning.

Another day, we were sitting there quietly, the only sound being her clock on the wall near her bed, and she said, “See that shiny thing going back and forth?”

I could tell she meant the pendulum of the clock reflected in the mirror on the wall opposite us. Yes, I said, and was about to name it as I was still in the habit of doing. But Mum spoke first.

“Isn’t it lovely?” she said.

The word pendulum lodged in my throat, suddenly utterly irrelevant.

…“Why does it hurt?” she kept asking, sotto voce so as not to appear complaining, not to make a fuss. I bent over the side of the ambulence gurney, holding one of her hands in one of mine, and used the other to stroke the hair back from her face. I told her that she’d fallen; she might have fractured her hip. Where? she asked. My face close, I told her: back in her room at the residence.

She nodded and lay still for a while, then asked again, “Why does it hurt so much?” And once again I told her, my hand holding hers, she giving it a squeeze and I squeezing back.

Mum didn’t just fade away and die that week. Her vital signs indicated that she’d “stabilized,” though at such a low level of function that she was barely there. It was like she’d gotten snagged on a branch nearly at the bottom of a cliff. She wasn’t coming back up; there was no hope of that. But she wasn’t dying either.

Now what? They wanted to discharge her, preferably to a nursing home. I drew a big, ragged breath, trying to get my bearings in the world beyond Mum’s hospital ward, including the rest of the family….