I am the child and the parent. My story is not unique, sadly it is all too common.
A memory: my mother at her most glamorous, the waistband of her evening gown encrusted with jewels, her hair poufed in a 1960's beehive, elbow length gloves, eyebrows arched and lipstick shiny, the scent of Shalimar. I don't remember where my parents were going, but I was in awe of the elegance my mother possessed. Another memory: my mother at her most devastated, mourning the loss of her own mother, but still elegant in a black dress, black hose and high heels, my shock at the unexpected peal of her laughter ringing across our house as someone made her laugh, her grief released in a chiming trill.
My mother was an extraordinary woman. The daughter of immigrant parents she not only went to college, she went to grad school earning a Masters in history. She worked at Newsweek at a time when most women didn't work at all, specializing in writing about religion, education and politics. She married my father, late enough in life and quickly enough after their meeting that many assumed it was a shotgun wedding. (It wasn't). Theirs was a great love affair. It still is.
I write about my mother in the past tense even though she is still alive because she has been stolen from us by Alzheimer's disease. The woman who worked most of her life, taking time off only when my older brother was born and returning to the work force after my younger brother started school, the woman who supported my dad through six elections to public office, the fierce tiger mother who protected me and my brothers, who loved her family unreservedly, that woman is largely gone. The love remains, she knows who we are, but even that I know is only a matter of time. The woman who loved words and word games and laughed at puns, even the most terrible of them, is missing, and the woman who remains cannot remember the words for "clock" or "cup" or understand the directive "put on your coat." The woman who was usually too engaged with "doing" to waste time at the beauty parlor, but who scrubbed up beautifully when the occasion demanded, now largely exists in a benign fugue and ignores basic hygiene. The scent of Shalimar is gone, its replacement, sour.
A memory: my brothers and I are hungry, but in our home dinner is not at 6 p.m. like all of our friends', as we wait every night for my father to come home so we can all dine together. When he arrives at 8 he brings in a blast of cold air and a rush of energy. Dinner is not just a meal, it is a quiz: "Who is the Secretary of State?" "What do you kids know about Watergate?" Another memory: a class trip to City Hall. My father is a councilman and I harbor a mixture of pride and embarrassment that this position has allowed my class this special access. My father moves easily through the council, his booming voice and easy manner with his colleagues just what I would expect. It is, after all, the booming voice that quizzes me at dinner.
My dad is retired now, although still President of his co-op building and on the Queens library commission. Mostly though, he is consumed with the care of my mother. And it is this act, one born of love and selflessness, and also maybe born of denial and defiance, that breaks my heart.
I have just returned from a weekend in New York visiting my parents. My younger brother also came, he from Cleveland. We hoped that our combined presence would impress upon my father the need to make some changes that he has adamantly refused to make. Some of these things seem simple, burner guards on the stove (as my mother tries to make tea by putting a mug directly on the stove), putting the sharp knives where my mother can't reach them (as she confuses forks and knives and we are afraid she will slice open her mouth). Some of these things are trickier. For example, we want my father to hire some in-home help to take care of my mom, but more importantly to give him some much-needed respite. While this might seem simple, it has proven virtually impossible. My father insists he can "handle it," he insists that he never leaves her unattended. He insists that the agitation a caregiver will cause my mother is greater than the relief he or she would provide either of them. But the strain on him is apparent, and over the course of one short weekend, I found my mother leaving the apartment and wandering out into the hall, as well as walking into the kitchen after a spill rendered the floor dangerously slippery, even after she was admonished not to enter. So my brother and I installed the burner locks and hid the knives. The knives were out again within the hour, I suspect the burner guards were removed as soon as I left for the airport. I can only look at their warm, cozy apartment as a booby trap now. The family pictures and the art collected on their travels all fade away and I can only see the door that leads to the terrace 39 stories above the ground, the throw rugs that could cause a fall, the electrical cords and sockets that scream danger.
So I am the child and the parent. My dad, the patriarch of our family, with his booming voice, a self-made man who transcended his salesman father to go to NYU and Colombia Law school, become a partner in his firm and a leader in his community, the man who was famously instrumental in rescuing New York City from bankruptcy back in the day, now rolls his eyes at me when I try to insist on safety and care. Or worse, looks disemboweled when I insist he sign a contract in which he agrees to my safety and care demands.
My parents raised me with boundaries, discipline and expectations, guidelines that I have incorporated raising my own children. But how do you really enforce boundaries with your father? What disciplinary act can I impose? I did make him sign a contract on my last visit and I taped it to the wall. On my return this weekend, not only was the contract nowhere to be seen, not a single item to which he had agreed had been handled. I thought he would honor a legal document if he couldn't honor his daughter's concern. I was wrong.
Sometimes I think if I lived in New York it would be easier, but my brother that does live there has run into a similar brick wall with his attempts. I hold my breath every time I leave them, all the rearing and roaring dangers of their life together flooding my brain. So maybe it is easier if I am in Los Angeles, tending to my own family and imposing discipline on my own children, who listen. I am becoming sadly resigned to the out-of-sight, out-of-mind principle. Still, while I am trying to make peace with what I can and cannot do, I mourn the bright, word-loving woman that was my mother and the man who always knew the right answer that was my father.
For more information about safety and Alzheimer's patients see the following links: