One of the hardest things you will ever have to do, my dear, is to grieve the loss of a person who is still alive.
I have always liked living alone. Getting used to a husband, and then a baby, required a lot of growth in me as I relinquished my precious privacy. Kate was a mere toddler when divorce turned me into a single mother and any semblance of privacy was entirely extinguished.
Since Kate left for college in the fall of 2008, I have lived alone, returning to the long stretches of quiet that nourishes my soul and refreshes after a weary work week. I have been lucky to sleep in on a lazy Sunday morning if I so desired, eat or not eat depending on my mood, have full control over the remote to watch whatever entertainment whim strikes my fancy, relishing a good binge on a long weekend.
Last week I took in a friend with advancing Alzheimer’s who had been living in an untenable situation with her son and daughter-in-law—who was less than thrilled to be dealing with Marlene the past two years. After nine days, I can say that there have been more challenges than victories, but I also know that some of the challenges are within me—relinquishing a singular life to which I’ve become accustomed once again.
Marlene is struggling against a disease that has robbed her of words, today’s date and year, what she did yesterday, what I answered 20 minutes earlier (and the same answer to the same question 20 minutes before that) memories of the recent past, the ability to drive, and a fiercely independent life that saw her travel the world as both a “stewardess” (what they were called in her day) and a curious and impassioned traveler. She married seven times, had twice as many lovers, raised two sons, followed at least half a dozen spiritual paths, had a multitude of careers, finally becoming a reverend, helping people in hospice and memory care facilities who were in the state she now finds herself. Life is a curious thing.
In her young adult life she kept the books for men who would turn out to be mobsters. As the young bride of an abusive husband determined to kill her, they served to get her out of Las Vegas, threatening her husband if he pursued her. In her stew days she helped airlift women and children in war-torn Congo during the rebellions of the 60s. During her most impassioned spiritual quest, she has traveled alone to India several times, riding an elephant and receiving wisdom as a Sai Baba devotee. She has hiked in the Andes, gazed at the Eiffel Tower in the City of Lights, turned heads as a buxom redhead in Singapore and traversed most of the United States by plane, train and automobiles. This petite woman’s big life is now relegated to my guest room and a storage locker in California as I desperately cling to my frazzled patience. She is not going gently into this dark night.
I was 11 years old when I first met “Auntie” Marlene, accompanying my mom to a swanky dinner soirée for 14 at Marlene’s and her dashing second husband’s new house. The long table was set with crisp white linen, elegant china, fresh cut flowers and gleaming cut-crystal candlesticks—a far cry from how dinner was ever served at my house. It made a big impression even though the delicate bone china and sterling soup spoon did not make rabbit stew any more edible to my unschooled palate.
Mom, an only child, worked with Marlene. In time their friendship became more like long-lost sisters, with Marlene becoming my own personal Auntie Mame. She took me under her carefree and creative wing and I began spending weekends at her house—probably when my mother needed to salvage her own tenuous privacy.
Marlene was the first person to put a paintbrush in my hand. She taught me to sew on an old industrial sewing machine she had inherited from her grandmother. I would take long leisurely bubble baths in the pink-tiled bathtub, dousing myself afterward from a large bottle of Jean Naté that sat on the ledge amidst the candles. Everything at Marlene’s seemed more elegant, vivid and lively—reflecting the bubbly redhead who served as a beloved mentor. Lying on a beach, her voluptuous pregnant belly spilling over a bikini—decades before Demi Moore made pregnancy sexy on the cover of Vanity Fair—she taught me solitaire and gin rummy, immune to the indignant stares of the demurely clad women and the appreciative stares of their husbands. She would serve as my confirmation sponsor when I was 13 and likely fueled my own spiritual journey in the years that followed.
When she and her husband separated for a few months, Marlene lived with my family until she learned she was pregnant and tried to patch her failing marriage together to welcome her firstborn son. Her second son was born a couple of years later, the marriage still tattered until it finally unraveled.
By the time I was 19, my mother moved to Palm Desert and my friend Vickie moved in to the apartment my family had lived in for seven years. We were to care for my then-11-year old sister so she could finish out her 6th grade year–until she deemed us too strict and begged to go live with Mom. Instead, Laurie went to live with Marlene until school was out (Laurie had to change schools anyway; I am not really sure why she didn’t go live with Mom in Palm Desert). I visited my sister every other weekend and catered to her desires—which meant we either saw The Love Bug or The Poseidon Adventure at every visit for several months.
Not long after that, Marlene moved back to Las Vegas to be close to her parents to help raise her two boys. Our families lost track of one another for more than 15 years, but somehow reconnected after Mom hunted her down. By then, I was in my late 30s and the mother of an infant.
The first few times Marlene visited L.A., she stayed with Mom. I would drive out for dinner or a leisurely afternoon visit. It soon became apparent that, as an adult, Marlene and I had much more in common than she and my mom. Soon, she would stay at my apartment when she came to town and Mom would join us for dinner. I also lived closer to one of her sons, and it was much easier for her to visit her family for an afternoon and return to my apartment for soulful conversations and laughter deep into the night.
When my mother died, it was Marlene who worked shoulder-to-shoulder with me for three weeks as I dismantled 78 years of my mother’s life. It was she who protected me when a neighbor asked for some of Mom’s shoes one too many times and the neighbor’s greed tweaked my grief and unhinged my ire at the vultures ungraciously picking over Mom’s things. That first Thanksgiving without my mother, Marlene flew up to Idaho, knowing that I was still feeling the anguish of losing Mom.
Marlene’s memory started noticeably slipping about six years ago, but became much more pronounced at the beginning of 2015. Marlene burst into tears after I phoned to wish her “Happy New Year” because she had shown up for a doctor’s appointment a week early and became flustered when they told her that she had the wrong date. She confided that she was having memory issues—and was surprised when I said that I knew. The doctor had already given her a diagnosis of Alzheimer’s. Back then she believed the doctor; now she is certain she is “just a little confused,” even though this rotten disease has stolen much more in the ensuing years. When I offered to call her every day as a touchstone, she cried again and said, “That would be so great. Thank you, Linna (her pet name for me since I was a young girl).”
By that April, after getting in some financial trouble because she was forgetting to pay her bills, her younger son insisted she move back to California to be closer to her now-grown sons. Within a couple of weeks, he had all but abandoned her, isolating this once social darling. She lived between the cracks of her two sons’ cantankerous relationship for over a year, and then moved in with her older son (who has his own issues) and a daughter-in-law that has been angry since I first met her 20 years ago. Dealing with a forgetful, obstinate mother-in-law did nothing to improve her disposition and I couldn’t take hearing Marlene cry every time I spoke with her. Here she will stay until her physical and/or mental degeneration is beyond my capabilities.
In the past week, I have come to understand what her family has been going through a bit better and have more compassion for them. That said, no one has phoned to see how Marlene is faring—and that is unconscionable—even if they were popping champagne corks the minute she got on the plane.
I understand what it’s like to lose the life you thought you had, and can only imagine what it’s like to know that it will never get any better; that self-determination and self-reliance are replaced with people taking away your car keys and telling you to take your pills. I know she senses the weariness in her caregivers even if she doesn’t fully understand how mind-numbing it is to repeat the same things 20 times each day.
She wants her own place and all of her own possessions. Her jaw tightens when you tell her she can’t be alone. “I’m okay. I’m just a little forgetful,” she says, resolute that she can fend for herself. When you remind her of all the things she forgets to do, she says, “I don’t remember that.” The irony is completely lost on her.
We almost went to war on Sunday as her frustration escalated that there simply isn’t room for four furs, two walk-in closets-worth of clothes, 100 pairs of shoes, enough jewelry to open a Claire’s Boutique, and three large antique dressers. This women who charmed everyone, is now sullen and resentful—something I was confident would dissipate once she was in friendlier territory. This once easygoing, madcap woman is now just mad at the world, and I am now the prime target in her crosshairs.
Marlene had a meltdown in California the day before she was due to arrive, ratcheting up my anxiety. My saint-of-a-daughter flew to L.A. instead of heading home to D.C. after visiting for my birthday and Mother’s Day. At 4:30 in the morning, as Kate and I headed to the airport, knowing I was terrified of what I had gotten myself into, she asked me what my favorite memories of Marlene were. As I spoke of all the tender mercies and riotous laughter through nearly 60 years of loving this woman, my heart softened. Kate is a smart cookie.
Arriving in L.A., Kate handled Marlene’s paranoid delusions, registered the car that has been sitting idle since they took away the keys over a year ago, packed up her boxes and drove Marlene’s car to Idaho because she was frantic that her most-prized possessions were going to be sent with movers.
These past nine days have felt like nine grueling years. I have reiterated over and over that I understand how hard this must be for her and tried to explain that it’s hard for everyone else too. She was flat-out incredulous at this suggestion.
I had to refuse an invitation from my sister and niece to join them in Seattle for a long weekend next month—the first time I would have seen either of them since my aunt’s funeral in 2009. It has taken me six years to convert my daughter’s teenage lair into a welcoming retreat for guests. Now the friends who talked about coming up to relax this summer won’t be coming because there is no room at the inn. My daughter is now relegated to the couch when she visits our home, and the clothes she leaves here so she can travel light have been evicted from the room that was once hers. I feel twisted and turned between wanting Marlene to be here so she can feel safe and loved and resenting her for not recognizing all the sacrifice and effort made by everyone that loves her. I told Marlene that we are both in a period of adjustment, gently explaining that although she has lost so much, that family and friends giving up their freedom and the space to care for her is a kind of loss too. That seemed to sink in. At least for the moment it was expressed.
On Monday I took her to spend a few hours at a senior center. The day before it sounded like a good idea to her, but she was resentful when I told her we had to leave in a half hour. I reminded her that the worst thing is for her to sit and watch TV while I have to work. Finally, she reluctantly acquiesced. I thanked her for trying as we drove to the center and told her she never had to go back if she didn’t like it. I could tell she wasn’t too happy with me. She wound up having a lovely time and was reading the schedule of other activities throughout the week after I picked her up a few hours later.
We went to dinner later and laughed and reminisced. We watched James Corden’s primetime special and laughed until our faces hurt. It was a good day. Buoyed by that success, I offered to take her to the center the next day for some of the activities she had read to me. She balked. I am learning that this disease is as mercurial as the Idaho weather.
She views any suggestion that she has Alzheimer’s as a diabolical conspiracy even though her face contorts as she searches for common words and familiar names. We took a ring to be repaired and the next day she wondered where it was (she is constantly thinking people are stealing things). I reminded her that it was at the jeweler.
We are in a “cold war:” if the house is cooler than 77º, she is fully clothed, bundled in a thick pink terry robe, wearing a furry black hat with the hood of the robe over that. Meanwhile, the sweat is running down my armpits when I dare turn on the air to bring the temperature down to a balmy 73º. A space heater and an electric lap blanket will be here on Friday to help us cohabitate in different climes. I am ordering a clock that has the date as well as the time in the hopes it will help tether her to the current month and year and negate me from telling her what day it is every 30 minutes.
She has more clothes in the guest room than I have after living here for 14 years—and wants to bring up more from storage in California. We butted heads because I told her she could not move three dressers into a room that already has a bed, a dresser, a desk, a chair, a bookcase and a nightstand. In order to calm her, I have quite literally moved things out of the guest room and dumped them in various rooms in my house until I can figure out a new home for them, or send them off to Goodwill—which doesn’t seem fair since it is my house and she is unwilling to part with anything. But this disease isn’t about fair. I keep praying that my better angels keep me in check because I know that she didn’t ask for any of this. As hard as this feels right now for me, I know it is so much worse for her.
I found some research about a UCLA team who reversed Alzheimer’s in 9 of 10 patients in a clinical trial. Amongst other things, it involves a strict Paleo/Keto protocol (no sugar or grains), but she likes her sugar, so attempting to get her to conform to the diet will be a real war of wills. In the past week she has twice ordered crepes with sweet cream cheese filling, covered in berries and whipped cream, caramel lattes, hot cocoa, three milkshakes, ice cream, beer and a strawberry margarita. She says she doesn’t eat much sugar. Sigh. Do I regulate what she orders for her own good, or allow her the few pleasures that remain? And do I have the mental and emotional stamina to deal with even more resentment if I make her adhere to a strict diet?
Alas, there are more questions than answers right now. The books and the warnings of what lies ahead are about a disease and its behaviors. I happen to love the person that lies within the tangle of misfiring neurons, turning her into someone I don’t recognize half of the time. But there are still sharp glimpses of the woman who recognized the creativity in a young girl and brought it into bloom, who loved me in ways my mother wasn’t capable, who stood by me during my darkest grief. The anger she arrived with nine days ago is fading. She hasn’t riled herself up about her daughter-in-law in days. This morning she thanked me for cooking breakfast for her. She appreciates the long drives we’ve taken as the vibrant spring days have embraced her in their warmth. And she says, “I know you love me.” And I do. That will have to be memory enough for now.