Last year, as spring slid into summer, my mother slowly slid into what would be the last months of her life. The process started with disengagement. First, she shied from the outings that had always energized her. Then, she grumbled at having to leave the apartment. Finally, she refused to leave the couch, where she slept most of the day tucked in the nest of handmade pillows that she collected over a lifetime of traveling around the world.
The next step was a week-long tsunami of agitation and combativeness. This was even more astonishing because the single gift of Mom's dementia had been to make her sweet and compliant.
In retrospect, I now see that I was actually astonished by the whole last months of her life. ..or were they the first few months of her dying? Because the first thing I learned from my mother's death in mid-September was that even at age 64, I knew nothing at all about dying.
I was a young teenager when Elisabeth Kubler-Ross challenged our notions of how to treat the dying. Along with the rest of the culture, I assimilated the radical notion of On Death and Dying that we should no longer shunt our dying loved ones to the hospital. The New Directive was to support their dying at home or in a compassionate environment like Hospice, where they could retain their dignity all through their final hours.
And let me add that, in the absence of any direct experience, I just assumed that dying was exactly that: a matter of hours. Fed by the filtered black and white photos in my copy of On Death and Dying, I developed quite a poetic bank of images of what those final hours would look like. You know what I mean. A hospital bed, its steel softened by a handmade quilt and the family cat, sits by the window, arranged to capture the view of the magnolia tree in pink bloom. A bedside candle flame dances as loved ones hold hands, share memories, and beg--or offer--forgiveness. The whispered "I love you" and then...perhaps a shudder...and then sorrow. With serenity just around the corner.
My mother's death left me with a profoundly different bank of images.
Yes, there were the angelic aides from Hospice, who alternated between lovingly massaging cream into Mom's eroding skin and checking their cell phones for Facebook updates. Yes, there was a hospital bed but I couldn't add the afghans she had knit because my father keeps the thermostat set to "Human Body, Feverish."
But there was no candle (see thermostat, above). And there were none of the serene exchanges that resolve all unspoken tensions between mother and daughter. In fact, there were no exchanges at all. My real mother's default response to emotion was avoidance. I will never know if dying would have changed her mind because her mind was full of Ativan, Haldol, and morphine to control terminal agitation.
Yeah, "terminal agitation." Ever hear of it? Me neither.
As the name suggests, terminal agitation is an escalating picture of restlessness, agitation, and downright combativeness that may occur in the last weeks of life. Hospice considers it a crisis--and given all they have to deal with, that's saying a lot.
Terminal agitation has bloodied all my fantasies of how we die. Here's a snapshot from the morning I stayed with Mom during a care planning meeting. The last day she ever talked to me.
"We need to go now," she insisted, trying to get off the couch without any success.
"Get me out of here NOW," she commanded. I obliged, trying to figure out a route away from the public spaces of the nursing home.
"Can't you go any faster?" she demanded, as I wheeled her up and down the halls of the third floor. That held her. Until it didn't.
"What's the matter with you, we need lunch."
"Ok, here you go," I said as we returned to the apartment and I slipped a small plate of her favorite foods on to the table.
"What's the matter with you? I said 'lunch'!"
Here is where mothering two toddlers came in handy. "Okay, here's lunch," I said as I put two M & Ms in her mouth. But she wasn't having any and I was shit out of ideas. Luckily for the both of us, the nurse returned and, even luckier, she had a morphine injection in her pocket. I coaxed Mom to the couch, where she relaxed into my arms. She asked me to tell her a story...which I did, with tears in my throat.
My gentle and gentlemanly father could not acknowledge that his wife of 65 years was dying and so could not help but scream at her when she swore at and scratched at the aides. Hospice took her to another apartment to stabilize her (and him). Mercifully for me, they told me I shouldn't come by. By the time I saw her four days later, "stabilized" looked a lot like unconscious.
If I hadn't experienced the agitation myself, I would have suspected they were simply drugging her to make their lives easier. But they weren't. They were drugging her to make her life easier for her. ...to make her death easier for her.
We went to our craft show for the weekend because 1) no one told me I should not and 2) I desperately needed to catch my breath. Rona the Super Aide stayed with Mom in her deep fog, whispering to her that I would be home on Monday as she cleansed the sweat off her brow (see temperature, above).
I came back Monday morning and held her hand, searching for any sign that she was holding my hand too.
"I'm going home now to change and will be back later," I whispered. "But if you need to go now, it is ok. I am taking care of Daddy and I will make sure he will be all right."
I was in the car for 15 minutes when Rona called me to tell me she was gone.
It is going on eight months since that phone call. I am starting accept, rather than avoid, my new understanding of the reality of dying. I am starting to accept what my mother taught me about dying: it is not a moment but a process. It may not be pretty, but it will be real...as real as life.
And I am now starting to catch glimpses of my real mother through the searing images of last year. They are in the way I am quick to judge anybody and the way I wave my hand to dismiss opinions of others. They are in the way I trim fat off the brisket I cook for Passover and the way I fold used pieces of aluminum foil and tuck them in the drawer.They are in the way I love adventure and the color red.
They are in the way I am washing and folding the sweaters she knit for my babies, readying them for the grandchild I am expecting in July.