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The Reprieved

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My mom has started the grand business of dying. Actually, the process isn’t splendid or even obvious. The event itself doesn’t appear imminent. We haven’t summoned the priest. Rather, Mom’s story is in a long, slow exhale. She used to tell me, “We know not the day nor the hour of our death. Only God does.” Be that as it may, in Mom’s case, we now know the likely cause: She has Alzheimer’s. I, her oldest child, can barely speak the word out loud. While the public face of Alzheimer’s is a national rallying cry for prevention, treatment, and cure, my journey with Alzheimer’s is private. I struggle to begin this last trip with Mom because we share a secret: I know Alzheimer’s was one of her biggest fears and she knows losing her was one of mine.

When you are young, the idea of disease – incurable, mind-eating disease – exists on the periphery of life. That’s as it should be. It’s shamefully cliché for me to say until it happened to my family I never paid much notice of Alzheimer’s. That I am noticing it now would be the understatement of my life. It’s the big, four column headline (Hell, let’s make it a red headline) that greets me each morning, “Mom Has Alzheimer’s!” A smaller caption underneath would be, “Middle-Aged Daughter Paralyzed By Fear And Indecision.” Mom and I have yet to even acknowledge to each other this is happening, yet it’s been “unofficially official” for almost two years. My dad, my sister, and my brothers have spoken to her about it; however, I cannot. My dear husband assures me “she knows you know,” but now – seized by the thought that time is running out – I want to do better.

Mom is technically in early stages of the disease; she recognizes us, and she knows where she is. However, with each encounter we see decline – poor word retrieval, confusion, forgetting long time friends, the inability to recall what she did that day. Mom is no longer allowed to drive (she was unable to remember which way is left or right) nor cook. Dad has taken over almost everything. He is so sharp and so good with her. I want to put aside my selfishness and embark on this last trip with her. Before the Mom I know becomes irretrievable, before I am simply a caretaker, I want to be able to tell her directly that I am here. I know what’s happening. I will not leave you alone.

Fortunately, or unfortunately, there is a limitless repository of data on point: fifty-six million Google hits for the word Alzheimer’s. Stories have been leaping out at me on daily basis since we suspected Alzheimer’s was at the root of Mom’s forgetfulness. A New York Times editorial (October 27, 2010) around the time Mom began medical evaluations called Alzheimer’s “the single greatest threat to the health of Americans.” Co-authored by former Supreme Court Justice Sandra Day O’Connor and prominent scientists, the piece included chilling statistics: Alzheimer’s is “100 percent incurable and 100 percent fatal.” By the year 2050, an estimated 13.5 million Americans will have it.

Justice O’Connor speaks from experience as her husband, John, died of Alzheimer’s in 2009. Mr. O’Connor – also a lawyer – was placed in an Alzheimer’s extended care facility near the couple’s home in Arizona and within a short time after arrival had found romance with another resident. Apparently this is not unusual, and the O’Connor family went public with the development. U.S.A. Today carried an article in November of 2007, reporting Mrs. O’Connor was “thrilled her husband was relaxed and happy and comfortable.” Son Scott O’Connor said his father was acting like “a teenager in love.”

Peter Reed, senior director of programs at the Alzheimer’s Association in Chicago commented on John O’Connor’s situation saying that while Alzheimer’s victims lose their cognitive skills they still retain “a need for relationships.” Those words jump out at me, not in terms of Mom falling in love later, but in terms of my efforts to hold on to her. How can you maintain a relationship with someone who is retreating into the shadows? Someone you want to grab in a panic and say, “Mom, come back.”

Ironically, although I am incapacitated by Mom’s diagnosis, she has always considered me a clear-headed, face-any-challenge, type of person. I sense her surprise that my sibs and I turned out so well in spite of what she considered her sub-par parenting. To explain: when we were younger, Mom overcame a severe anxiety disorder which had kept her (figuratively) a prisoner of her past and (literally) confined to her suburban home. In order to break free of her phobias, Mom faced down her own history: Born in the worst year of the Depression, 1934, she had only one sibling who was five years older. She always suspected she wasn’t wanted but became inordinately close to her mom, Ethel. Mom once told me that she never made a move without her own mother’s O.K.

My parents married in 1959. In short order, my mom got pregnant with me, quit her teaching job, and moved out to a suburb under O’Hare Airport. In her loneliness and insecurity, she talked to her own mother often. During a phone call in October of 1961, Ethel complained of shortness of breath and a shooting pain down her left arm. They concluded it was nothing and said goodbye because Ethel had to get to church for her bridge group. Two hours later, my dad walked into the house and announced my 56-year-old grandma had folded her hands of cards and dropped dead at the table. At the post funeral luncheon my mom started bleeding, which is how she discovered she was just pregnant with my sister. As the pregnancy progressed, a sense of fear, loss, and abandonment overwhelmed my mother. By 1966 she had two more babies, but she was closed off-shut down. That’s when she stopped wanting to leave the house.

But sometime in the 1970s, after seeking therapy, a miracle happened and the curse lifted. My mom became positively gleeful as only the reprieved can be. She and my dad began to take time together. We moved to a higher functioning suburb. Mom got a part time job uptown at an employment agency and ultimately opened her own placement business. She joined associations and clubs. Friends bloomed around her like a garden. In time my sibs and I left the nest and started our own lives. We four currently live in the same vicinity as Mom and Dad, so we have remained very close. Mom always said she especially wanted to be there for my sister and me after we had children because her mom had not been there for her.

And so she was. When I was newly in the suburbs, raising my children with a wonderful but busy physician husband, Mom was there for me like only a mom can be. Every Thursday night, my husband’s late night to see patients, my mom would come to my house. She would orchestrate the kids’ baths and stories and then she and I would talk over pizza and wine. During this time period, she and I spoke of many things, but I remember clearly her fear that she would someday lose her mind. For example, one time she couldn’t find her keys as she was leaving. I recall her turning to me at my stove, saying, “You don’t think this means I am losing my mind?” “Unlikely,” I replied – no Alzheimer’s in our family! But as time went on, I noticed she kept repeating herself. During one phone call I got testy, telling her she was talking in a loop, over and over. Mom hung up and then dialed me right back, lashing out that her mind was “perfectly fine” (I hadn’t said it wasn’t.)

It’s awful to think Mom probably suspected what was starting. It triggered a pattern of denial in me, which has evolved into a solid, silent panic. It is this barrier that needs to come down. It’s time for me to learn how to deal.

For better or for worse, celebrities may actually serve a higher purpose and give me a little input on what to do here. As it turns out, there are bold face names who have written of losing a parent to Alzheimer’s. Yasmin Aga Kahn, daughter of that gorgeous 1940s pin-up girl, Rita Hayworth, has raised money for years to fight the disease that took her mother. Actress Patti Davis, daughter of former president Ronald Reagan, wrote The Long Goodbye about her father’s Alzheimer’s. Last fall the actress Diane Keaton published her memoir, Then Again, detailing her relationship with her mother and her mother’s decline from Alzheimer’s. However, if there is one American family who is a role model in the face of adversity, it’s the Kennedys. They have a one woman warrior in Maria Shriver, who lost her own father, Sargent Shriver, to Alzheimer’s a couple of years back.

Among Shriver’s many accomplishments on the topic are a children’s book called What’s Happening to Grandpa and an HBO Documentary called, “Grandpa Do You Know Who I Am?” Larry King hosted a CNN special in May of 2011 featuring Shriver called “Unthinkable: The Alzheimer’s Epidemic.” In 2010, Shriver sponsored a “March on Alzheimer’s” walk and also authored The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which her blog describes as “a comprehensive study on how the devastating disease affects women as caregivers, advocates, and patients.” Shriver delivers on a personal level because she – like me – is a “child of Alzheimer’s.” She admitted to Larry King to being “scared to death” because she is “staring down the barrel of Alzheimer’s.” I so get that. I am acutely relieved to hear such candid disclosures. It loosens my paralysis; I feel less alone – less powerless.

I believe people like Maria Shriver and others have raised the national consciousness on Alzheimer’s. Indeed, Mom’s illness coincides with the Obama’s administration’s “National Alzheimer’s Project Act” (NAPA) signed into law in early 2011 and designed around a goal of effective prevention and treatment approaches for all Americans by 2025. Obama’s 2013 budget earmarks $100 million toward the effort. Clearly, it’s a new era of understanding and action, prompted in part by the universal fear Alzheimer’s generates.

I know the odds are long that an effective treatment (dare I say cure) will come in time for Mom. Simply put, there is precious little hope with Alzheimer’s so it’s probably too late for a reprieve for Mom from the disease. It occurs to me that recovering from the long ago anxiety disorder likely used up any miracles coming her way. Then again maybe not, for oddly enough the tender mercy in Alzheimer’s is the disease itself muffles Mom’s emotions, acting as its own anti-anxiety medicine. Consequently, Mom doesn’t appear acutely afraid of what’s going on – she isn’t actively living her fear of losing her mind. So maybe miracles do strike twice.

As far as my fear of losing Mom, there won’t be a reprieve for me. It’s part of life to let go of our parents. Hopefully it’s not too late for me to step up for her now. The more I know, the more I hear, the better equipped I am to face my grief at her illness and my fear of Alzheimer’s as a genetic guillotine. I take hope in the advocacy of other Alzheimer’s children and will follow the National Alzheimer’s Project to fruition. It’s a foregone conclusion I will join the movement.

As Mom’s story proceeds from here, I expect there will be good days and days when Mom can’t recall my kids’ names. There may be hugs and tears. I am preparing myself for a day when she may not know me. For now, I will begin with telling Mom I know. I am here. I will be with you until the end.

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