Friday, August 10, 2012

Why I Took A Break From Posting On This Blog: Death & Near-Death

I haven't posted on this blog for awhile, not since mid-April. It wasn't because I was lazy. It was because, to paraphrase John Lennon, Life had other plans. My mother died and my leg was broken when I was hit by pick-up truck while on my bike (that's in order of importance, but not chronological.)

Frances Alenikoff at age 62
On June 23, my mother passed away at the age of 91. Her last months followed the trajectory of so many of the old-old in this country: increasing longevity of age with no accompanying increase in the longevity of health.

Illusions of Immortality

My mother, Frances Alenikoff, was a modern dancer, choreographer and multimedia artist (here's the wonderful obit from the New York Times), who inspired many, among them current editor of Dance Magazine Wendy Perron, who wrote this moving In Memorium.

at age 78
Until October 2008, my mother thought she was going to live forever (she said, at various times, that she would live to age 125 or, in a curt nod to modesty, to age 100, but, truth be told, she was sure she would never die.)

I suppose that's natural, given her agility and grace well into her 70's -- diminished only slightly after her near-death from the tick-borne disease babesiosis in 1974. She danced until age 83 (her last performance was at Lincoln Center). There were times in my life when I thought my mother would not only never die, she would not even age.

The Fall

But then, Mom fell down the long flight of stairs in her home in East Hampton, New York. She lay on the floor for six hours before making it to the phone and 911. It was the third such fall. 

The first, when she was 82, was an accident -- she slipped on the stairs while rushing to answer the phone. The second and third were due to illness, the atrial fibrillation that ultimately led to her death ten years later. (She fainted at the top both times, probably due to the exertion of climbing the stairs.) Ribs were broken, head injuries incurred.

I rushed down to Stony Brook Hospital from my home in western Massachusetts to see my mother in intensive care. It was just a few weeks before the election; the financial system was collapsing; and the doctor told me, "Your mother can never live alone again."

The Exile Years

After her discharge from Stony Brook, I brought Mom to Massachusetts to be close to me while she was recovering from that last and most devastating fall (concussion, bleeding in the brain, giant purple bruises up the entire right side of her body.) After having tried to take care of her already during several major convalesences while living in another state, and having thereby lost all trust in ability of medical facilities to really care for her without my constant hovering and intervention, I had to bring her where I could visit her daily in the acute care rehab and then the nursing home rehab.

She stayed in Massachusetts for three years. After the first year, I gave up my own apartment and a job and moved to her house in East Hampton, Long Island, to repair a decade of deferred maintenance and get it ready for her eventual return home. So we switched places, something that took getting used to for both of us, but seemed to be the best solution at the time.

After Frances “stepped down” from the nursing home rehab, she went to a small, sweet but sad assisted living facility where she was one of the few residents who still had (most) of her wits about her.

Then we found a spanking new "independent living" facility ("facility" is the word she used and it was apt), with carpets still off-gassing, food trucked in from somewhere else, and a cookie-cutter design: long hallways broken by intermittently placed overstuffed benches that were never sat upon. Kitschy paintings lined the walls, Muzak of a 1940's vintage wafted through the hallways, and, in summer, there was the regular hissing of pesticide applications on the unnaturally green lawn outside her windows. It reached for ersatz "hominess" but managed only upscale motel ambience.

"Compassion" by Frances Alenikoff
But the managers were very kind (too kind, I think--they seemed to get fired on a regular basis, perhaps because "corporate" didn't like them getting too close to the residents.)

Nearly empty at first, the place slowly filled with residents, none of whom could really relate to the wild, avant garde New Yorker artist and dancer in Suite 110, who wore jewelry creations she had fashioned herself out of driftwood, shells, iconic figurines, and bits of beach glass, and clothing decorated with her complex, colorful drawings of dancers, goddesses, and mortals beset by torments and delight.

"Bed of Nails" byFrances Alenikoff
Did I mention the long hallways? The very long hallways -- too long for someone with advanced emphysema, congestive heart failure, and failing sight to struggle her way twice a day to the dining hall.

After the first year, she holed up in her two-room suite and saw only the aides she hired, her doctors, and me when I came on my monthly visit. Frances, a social butterfly who thrived on being the center of an adoring crowd, became increasingly isolated.

"I've Lost Everything"

Congestive heart failure and emphysema are not kind to the brain. The blood flows sluggishly. Getting enough oxygen to the tissues is difficult. And it didn’t help that my mother had sustained two head injuries on each of her two last falls down the stairs.

Dementia advanced from "mild cognitive impairment" to something not so mild. It interfered with her judgment and bladder control and, eventually, her ability to swallow without aspirating her food and maintain balance without falling. It made her paranoid. It magnified her fears. It stoked her fits of rage and confusion. 

But she had a proud spirit. And she could be so sweet, so tender. (And ineffably cute and charming.) Her caregivers adored her. They forgave her instantly for her occasional imperious outbursts, her accusations of abandonment and incompetence. (I, on the other hand, was completely undone, riven to the core by her barbs.) 

She had the kind of dementia that appears one moment and just as suddenly vanishes the next. She was a wonderful conversationalist up until she suffered the stroke that started her journey toward death 11 days later. She could recite a phone number you needed of a friend or doctor or caregiver without referring to her address book.

But she couldn’t figure out how to use her computer (she had been proficient on Adobe Photoshop before her last fall), or even the radio – and often even her ability to use the phone failed. Some of it was due to her failing eyes, but by no means all. Her mind was like an old patchwork quilt -- some parts were still vivid and colorful, other patches were frayed and fading.

Coming Home 

Finally, Frances couldn’t manage “independent living” anymore, not even with aides coming in twice a day to give her her meals and personal care. She would call them at all times of the night, thinking it was day and wondering why they weren’t there. Alone, her anxiety overwhelmed her.

(We joked that the anti-anxiolytic she was prescribed, Alprazolam, could have been called "All Praise-olam," so effective was it. But then I learned it also speeds the progress of dementia. Damned if you do and damned if you don't.)

February 2012.  And then, the final blow: we learned she had a malignant tumor in her uterus and it was growing faster than expected. She had no pain as yet, but was bleeding heavily. She stopped taking her blood-thinner and the bleeding slowed to a trickle. But without the thinner, she risked getting a stroke.

I had been begging Frances to come home for more than a year. The owner of the home care service in Massachusetts was urging me to bring her back to New York. Her house was ready to receive her. And I figured giving up my own freedom of movement would be a small price to pay for the peace of mind of being able to oversee my mother's care 24/7 and up close, with help from aides.

"I'll cook you delicious, organic whole food meals everyday," I coaxed. "I'll massage you. We'll look at your videos of your dances together. We'll work on your archives. I'll take you to the beach, even if you can't get out of the car." (All of which did eventually happen.) 

Finally, she agreed. I found out only recently that she had been telling her friends for years that she wanted to come home. But she fought me tooth and nail on actually doing it. "I have to get better first," she countered, stalling for time, beset by fears. That she wasn't going to get better was something we couldn't really talk about. 

In hindsight, I ask myself now whether she knew she was going to die only a few months after returning home. Did she think, going home meant going home to die? She even said, two days after I settled her back into the house she had built in 1967 with my stepfather, "how long is it going to be, really? Maybe two or three more months?"

On April 3, the day of the journey home, as the last ferry bumped up against the dock at Noyac, she confided to me in a quiet voice: "I feel I've lost everything. My body is falling apart; my mind..." She trailed off. I reached over to take her hand. "I know, Mom. I know." Then I told her that her spirit was still strong. That she could still love, still have joy.

(to be continued...)