Tag Archives: death from dementia

Not there yet …

On the 2 train back to Brooklyn, Photo credit: Malissa Smith

I am so not there yet.

Tears brim. At anything really. A nice photo of a cat. An episode of Deep Space Nine. A line from Joyce (yes trying to read him since returning from a brief trip to Dublin to see Katie Taylor’s last fight at Croke Park). Memories. Jed’s name. Any conversation with my new therapist, Jane and so on.

There is, however, a discernible difference to the grief I have felt.

The seemingly forever grief. The loss I felt after Jed was diagnosed with dementia, and the crushing sensation of fear and pain at such a horrible diagnosis. The years of loss as he disappeared into the morass of receding brain cells. Plus all the guilt about thinking he was being a total jerk during the previous few years when he was quick to anger, spent days in bed, and showed not the least bit of empathy about anything.

This new grief feels more present. Palpable. As if it were a huge, steady pop of a vein, just waiting for a bloodletting. For vial upon vial upon vial of red corpuscles and plasma and platelets to get the current read on all things Malissa Smith. My hemoglobin count, my liver and kidney function, how my thyroid is doing, and all the minute tests taken every six months or so to ensure my various this-and-that are nice and status quo.

The grief, though, is felt everywhere. I am all things in it and through it.

The little girl who felt abandoned. The bigger girl who was raped. The young woman who fell in love too easily and accepted mere scraps of affection when I really deserved kindness, respect, and love.

That younger girl and older girl and young woman is me now. Touching grief as a catalog of the leftover bits of things that haven’t been worked out yet. The things still left dangling—despite all the analysis, therapy, and meditation retreats—when Jed and I embraced and formed our oneness. My broken bits and his broken bits alive but forgotten as so many invisible carbuncles; attached and enclosed infections that bring discomfort but can be passed off as just the regular stuff. Painful but easily ignorable when it is not quite painful enough. Like a dull muscle ache easily forgotten in the stream of things.

The two of us. Fully adults. Accomplished. Wedded. Parents. Having formed our places in the world. Not our dreams, but not, not our dreams. But most miraculous of all, having found each other.

We knew we wouldn’t live forever, but time seemed infinite as it does when love is in the air and of the air and gets breathed in and becomes the very oxygen of existence.

For him to cease to be seems a betrayal of all of that promise. The truth, though, is harder. That sense of omnipotence is, anyway, always an illusion. More a betrayal of being present than anything else, because we do live and then cease to exist, and clinging to a sensation of omnipotence traps us in infinite pain. Of not seeing past the end of existence as we come to know it.

Grief is the wending of that trap. The series of moments. The reflections. The recognition of the horrible chthonic deep. The unrelenting stabs at the heart that do lessen with time. That don’t hurt as much and yet are as constant as the tears that leak. Tears that no longer heave. No longer feel as earth-shattering. No longer give an unmistakable sensation of flailing at the skin and bones of being.

I remain at sea. I don’t have my place yet, but I do smile. Enjoy my plants and my kitty boys. Seeing friends and acquaintances. Communing with people over shared passions: boxing, music, salsa dancing, or marveling at new landscapes of sights and sounds.

I can feel joy, Photo credit: Malissa Smith

I can feel joy. A sense of deep peace will come every time my tuxedo kitty boy Milo curls up next to me and, with his head on my wrist, begins to purr.

It reminds me that life is only ever here and now. And that even though grief is a part of that experience, it just is.

 

 

 

The long goodbye

It has been a week.

My senses are out of kilter as to time and place. I will think it is Tuesday when it is Monday. Saturday when it is Friday and vice-versus.

The house feels larger even with Izzi staying here. We rattle around. Marveling at how tall the ceilings seem. At how many people were able to fit comfortably in the living room when we sat Shiva on the Monday and Tuesday after Jed’s death.

With Jed at home, the rooms had always seemed balanced. His large frame occupying the space. Balancing out the height and width and breadth even in his last weeks lying in his hospital bed. His presence still filling the rooms with echos of his insouciant smiles or his coquettish turns in one or another doorway.

Jed standing tall was a marvel. His posture perfect but tinged with a languidness that harkened back to the Wyoming roots of his General father. And yet Jed was a true Easterner. Intelligent and smart and fast thinking from all his years spent in New York City. At home, on a sailboat or a kayak, climbing a mountain or walking the G-trails of Europe, or sitting at Puffy’s Bar, or writing one article or another for the New York Times, or sharing a pint of ice cream with Izzi. Talking politics or mycology or the origins of fire as the basis for the industrial revolution.

Frontotemporal Dementia robbed him of so much of that. Slowly. Insidiously. Painfully. As a horrible march down the rottenest of fetid paths lined with the scary monsters of childhood nightmares. Still, there were things he could hold onto. His three quick kisses to the air when one or another of us came into view.

The whispered, “I love you.”

The moment of sudden lucidity in his last week when he looked at Izzi and said, “I’ll be there.” For Izzi. For the milestones and triumphs in Izzi’s life to come. His fatherhood still there at the last.

The sway of his body as music played.

Jed still in there a little. Struggling to breathe. To live and release enough to pass on.