Maia Madden

Book Author, Journalist, Blogger

Archive for the tag “caretaking”

The Last Light of Day

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A long time ago I read a short story in the New Yorker By Alice Elliott Dark called “In the Gloaming.” I have never forgotten it. It tells the story of Janet, a mother caring for her son, Laird, who is dying of AIDS, and the last evenings they spend together outside in the magical hour when dusk turns to dark. The gloaming is intimate and shadowy, a purple suspension between now and forever, a time when words touch what really matters and life stands, still and perfect, before it disappears forever.

My father was in his gloaming the year before he died. He wanted to talk and be heard. He wanted to know how each person in the family was doing. He wanted to see if we had become what his dream for us had been. In the summer evenings, after dinner, he would ask me to read something I had written, his eyes half closed, his head held to the side, resting on a blue-veined hand. I knew I had not fulfilled his dream for me, but he showed no disappointment, only love.

When my father died, all the words inside me disappeared.

Now I want to remember everything about him, but what I remember most clearly is how badly we treated him. He had become superfluous. He couldn’t hear well but refused to use a hearing aid. Instead of politely raising our voices, some of us would shout, while others just ignored his soft-voiced attempts to be part of the conversation. He couldn’t walk well but refused to use a cane. Everyone berated him, especially since he had had several bad falls. When I asked why he wouldn’t at least try, he cocked his head, gave me that small crooked smile I loved, and said, “That would be humiliating.” I never suggested it again.

My father was a proud man despite the many humiliations he endured in his last years. He treated everyone he met with politeness, curiosity and dignity. He cared. When he died, the church was packed with people I had never met: his plumber, his pharmacist, his grocer, his nurses, his doctor, his home workers, and all the parishioners he had helped in some way. “Your father was such a good man,” they told me. In his last years, he had reached out with more and more love as if giving thanks for his long life. He knew how to listen, and he knew how to make people feel valued. They never forgot him.

He would call his grandchildren, one by one, into the dining room he had turned into a messy office. The glass table was piled with mail, papers, books, magazines, photographs and newspaper clippings, the jumbled remnants of his passions and memories. Each child had a special folder where he kept cards, letters, articles and mementos. He would ask them what they were studying, what they wanted in life, speaking in the quiet voice that, without the cacophony of a noisy dinner, was perfectly clear. And he heard every word they said.

Why do we so often treat the old, the sick, the dying, with dismissive impatience instead of love and understanding? When Janet talks with her AIDS-stricken son in the shadowy twilight, she is happy, connected to him by the spark of eternal love. Their conversations are a parting gift, not a chore to be endured. But Martin, her husband, avoids Laird. Fear deprives him of truly knowing his son.

So many times I could have lingered a few moments more, listened a little more closely. Instead, oblivious to my father’s imminent departure, I hid inside a book or watched insipid television. Anything to blunt the reality of death.

The beautiful, mystical, ineffable gloaming is so brief that we often fail to see it. Instead of embracing its magic and meaning, I fled.

And then he was gone forever.

 

 

 

 

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My Brother’s Keeper

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When Hurricane Sandy was heading toward New York, my first confused thought was, “I have to call my brother!” And then it hit me inside, like a kick in the stomach: my big brother was no longer in Westchester County. He was in an Alzheimer’s home in France, and I had put him there.

For three years, I flew back and forth between San Francisco and New York to try to save first his condominium, then his life, then his independence, then his rented apartment. Finally, defeated by his deterioration and the expense of New York’s memory care homes, I resorted to taking him back to France, just a few miles from where he was born, and leaving him in a place so far from me that now, despite the work, the worry, the responsibilities, the endless paperwork and all the legal battles I fought for him, I am filled with sorrow and regret.

“You did the right thing,” people tell me. Did I? I see him in my mind, wandering the corridors with empty-eyed men and women twenty years older than he is. I see him going outside to the small fenced courtyard to feed the chickens and stare at the familiar vine-covered hills of his childhood. I see him watching French television, restless and agitated whenever someone approaches, as he waits for a phone call or a visit, both so rare, both of which he will forget moments later.

But when I call him, I can see the smile on his face. “Maia, my sister, how are you doing?” he always asks, recognizing my voice instantly. “Are you coming to see me today?” And I lie. Yes, I lie again and again and again. I tell him not to worry, I’ll be seeing him soon, the way I used to. We’ll go out to dinner. We’ll have fun.

In truth, it may be many months or even years before I can afford a trip to France, and by then he may not recognize me at all.

What is the right thing to do? When my ex-sister-in-law alerted me to my brother’s decline, my first thought was, “Oh, he’s just getting more eccentric with age.” But she was persistent, and I finally flew out to find the most appalling scene I could have imagined. My brother, who cherished and refinished antiques, who was passionate about trout fishing and the environment, who spoke – and still speaks –four languages fluently, who had an MBA from Columbia University and managed the investments of rich foreigners, was living in squalor.

He had become a hoarder, unable to manage his money or his daily life, spending every penny he had on expensive meals and things he didn’t need. From the front door I inched my way through mounds of excess stuff, through a kitchen piled with dirty dishes, through a dining room littered with fishing rods and tackle boxes, to the one usable living room chair, where he sat watching grainy images on his vintage television, his beloved tabby cat on his lap, oblivious to just how bad his situation had become.

Upstairs was even worse: closets filled with dozens of expensive suits, slacks, shoes, shirts, and jackets, hundreds of ties, some with the tags still attached, drawers crammed with t-shirts and sweaters, boxes shoved under the beds and dressers, filled with who knew what. No wonder he was sleeping in his chair: a pile of unopened mail covered his bed.

When I started to sort through those envelopes and all the others littering the condo, I found that he owed every major credit card money, that his condo was about to go into foreclosure, that he owed the IRS a fortune in back taxes, and that he had liquidated the line of credit on his home and every savings account he ever had, including all of his retirement accounts. My brother, once well off and successful, was now completely broke and in serious debt. Somehow, I had to help him.

With the help of his forgiving ex-wife, we began cleaning the place, throwing out collections of empty cat food cans, wine bottles, plastic containers, magazines, newspapers, paper napkins – the list is far too long to recount. We filled one trash bag after another and snuck them out at night, so he wouldn’t see us. Otherwise, he would open the bags and look through them for hours, angered if we were getting rid of anything he found valuable, which was everything, from a pebble to a broken shell to a piece of wood he had found on one of his outings. The back of his van was crammed to the ceiling with objects he had taken from the streets or roads or garbage cans, objects he insisted could come in handy some day.

In the middle of one particularly bad night, he woke me up yelling, his face red with rage. He accused me of throwing out his favorite river rock (he had a huge collection!), a rock shaped like a heart. I was sure I had not, but afraid he might turn violent, I went out to the dumpsters in the biting cold, took back that night’s haul, and looked through every last item, finding nothing, as he sat staring at me in anger. The next morning, I found his precious rock in the kitchen.

I went back in November to continue the cleanup with my daughter. One morning we found him screaming outside in his underwear, angry that the squirrels were eating the birdseed he scattered everywhere, against his condo association’s regulations. People were getting into their cars to go to work and staring as I tried to gently steer him back into the house with the promise of eggs and bacon.

I went again in January, and then every other month. The house began to look better while my brother got worse and worse. Every time I returned, he had put new yellow post-its on the refrigerator, on the telephone, on the kitchen cabinets, on appliances he could not remember how to use, on his stereo buttons and his television remote control. I made him a notebook with all of his important numbers written down, but he would misplace it. There might be four post-its with our father’s number right on the phone, yet he would claim he couldn’t find the number. The message machine was always full, mostly with threatening calls from creditors.

Meanwhile, he had no awareness of his condition. He insisted on taking an exam to maintain his broker’s license so he could work again. He failed it repeatedly, always blaming someone or something and vowing he would pass it the next time.

Desperate to find out what was causing his mental decline, I took him from one doctor to the next. He had severe diabetes, high blood pressure, and cirrhosis.  He was ordered to stop drinking, which he ignored, repeating the same story that he never liked to get drunk growing up and had been raised the French way on red wine mixed with water until he was old enough for the real thing. Both of those statements were true. I had never seen him noticeably drunk, but he had obviously become a big drinker. His supply of expensive French wine was running out, so he started buying beer instead.  If I showed disapproval, he would wag his finger, furrow his brow and give me an angry lecture denying he had a problem.

After an exhausting series of tests, including one for mad cow disease, the diagnosis was always dementia. Probable cause: alcohol and uncontrolled diabetes or early onset Alzheimer’s. I got power of attorney, applied for disability, and put his house on the market.

On February 20, 2010, my sister-in-law called me to say that my brother was very ill and had called her to ask what he should do. The day before had been his 60th birthday, and he had drunk a few six-packs of beer outside of the nearby gas station with some guy he barely knew. He was throwing up blood. She called 911 and they took him to the hospital.

Everything was wrong with him, including a bad case of pneumonia. He went into a coma for days and was put on a ventilator. Once again, I was asked to decide whether or not to keep someone alive by artificial means. This time, I did not hesitate to say yes. He had a daughter I loved, and I was not about to give up on him. I was even naïve enough to think that he might regain his mental facilities!

When he came out of his coma, he remembered nothing. And when he finally returned, after escaping from the convalescent facility through a bathroom window, he denied that he had ever been hospitalized.  He had been gone for nearly a month. He had lost weight and seemed much healthier, but his mind was worse than ever.

And so it went. I arranged for Meals on Wheels and help with his utility bills, and he was approved for Social Security Disability payments. My sister-in-law agreed to come once a week, as did a social worker. But no one could control him, really. He would disappear in his van to feed feral cats or wander the country roads or shop and eat and drink in his old haunts with a new account he managed to finagle before I could close it and pay back all the overdraft fees.

Because the real estate market was so weak, it took months to sell his condo, and when it finally sold, at a greatly reduced price, paying back the liens and fees and attorneys left me with just enough for moving and rent and expenses his disability check could not cover. But where could he go?

I wanted to give my brother a chance to live on his own just a little longer.  He was much too young for a nursing home, and Medicaid had turned us down. So I lied again and made a great case that he was diabetic but fine otherwise and signed a lease for a coop apartment in a nearby town, where he could walk everywhere if he lost his driver’s license.  We painted the walls, sanded the floors and filled the place with his beautiful furniture, paintings and rugs. It was on the seventh floor, with a view of trees and sky and the sound of trains rushing by on the nearby rails. He loved it, and quickly forgot about his condo.

Wherever we went, he would pick up papers and garbage as he walked, railing against people who were pigs and had no respect for the environment. At home, he would spend hours cutting off loose threads from his towels or picking lint off the carpets with his fingers. Clearly, obsessive-compulsive behavior was part of his baffling disease.

The last time I took him to New York City, he wandered off in the subway station while I searched for him in a panic, calling out his name like a madwoman. I eventually found him dancing in front of a subway musician. By the time he had picked up all the trash on our way to H&R Block, we were very late. He fell asleep in his chair while the tax preparer was talking.

Every week, he would get into trouble of some kind or other, and I would get calls or e-mails from the building manager and his landlord. He kept parking in the wrong spot, usually the manager’s. He was feeding birds on his balcony. He crushed beer cans on the kitchen floor with his hard heels during the middle of the night. He told an old woman who was bugging him to go fuck herself. He got into a fight with the superintendent. One night he locked himself out of the building and pounded on the doors, yelling for someone to let him in, until someone called the police. His unpredictable behavior and angry outbursts cost him the renewal of his lease, although I did manage to get him a six-month extension by filing a bogus discrimination suit.

Finally, in November of 2011, police arrested him for driving erratically and impounded his car. By the time he told me, it was too late to get the van back, although I tried. I had ignored his doctor’s repeated advice to take away his car keys. How could I do that to my brother? Furious when he realized they had taken his precious van to the dump, he threatened to blow up the police department and set fire to their cars.

In three short years, I watched as my brother morphed into a demented man unable to care for himself. But when had it really started? And why had no one noticed when his eccentricity degenerated into madness? I felt guilty as hell.

April 1st loomed ahead of me, with no solution in sight. After his old cat died, we had gotten him a new one thinking that having the responsibility of a pet would help his mind.  Instead, he left open cans of cat food in every room of the apartment and forgot to change the litter. Already fat, the cat became positively obese.

I hired a wonderful woman named Dora to come in twice a week to clean, wash his clothes and arrange his medications.  They chatted away in Spanish, and she coddled him into taking showers and changing his clothes. Despite her efforts, he now slept fully dressed on top of his bedcovers. .

In March, he was hospitalized again for an infection in his hand that wouldn’t heal. He was forgetting to go for his infusions. Once he was better, the hospital refused to let him leave unless I promised he would have 24-hour care. He would wander away from his room, and the nurses would find him in CVS trying to buy beer. How could I afford 8-hour care, let alone 24-hour car?  So I lied to the social worker, signed a paper and faxed it back, and had Dora take him home.

I arrived a few days later. When I came to pick him up for dinner that first evening, he had disappeared. It was a cold wet spring day. I drove around and around looking for him.  I saw a homeless old man trudging through the slush with a black beanie on his head and big rubber boots on his feet. He was carrying two CVS bags, his eyes focused on the ground. He put the bags down and picked something up. I slowed and stared. It was my brother…

I had to hide my tears as I helped him into the car. He insisted on putting the bags in the trunk. As if I didn’t know they were filled with candy and beer! He had a daily limit on his ATM card, and every day he would walk to the bank to get his “lousy twenty bucks!” He was constantly losing the ATM card, or getting conned out of his money or getting kicked out of stores for stealing, a fact he thought he kept hidden from me.

Seeing my lonely brother bent over in the semi-gloom picking garbage off the sidewalk finally broke me. I gave up hope that I would find an affordable memory care home in Westchester County, which he loved so much. I gave up hope that I would ever be able to rent a place and pay for daily help, let alone have Medicaid help pay for it. I gave up hope that I could do anything more for him than pay his bills. He needed to be in a place where he was safe and cared for.

And so I lied again and bribed my brother with a vacation to France. Then I abandoned him to strangers.

He tells me how he has to clean the dining room after every meal – the people at this hotel eat so messily. How he saves the crumbs to feed his big birds.

“You mean chickens?”

“Yes, yes, chickens. “

He says he misses music and dancing.

“But I bought you a radio and your daughter bought you a CD player just before she left. She said she taught you to use it. “

“Really? I never saw them. I’ll have to look. I’d sure like to hear some Lady Gaga…”

Everyone says that I did the right thing, that I did what I had to do, that he’s healthy now and better off. But I would give anything to have him back!  Just to see him smile. Just to hear him tell the same stories over and over again and laugh out loud. Just to let him feel that someone he knows cares about him.

He may have lost his mind, but to me he is still the brother who wrote to me when I was far away in college, the brother who took my son and my daughter out to dinner every week when they lived in New York City, the brother who sent me a beautiful set of serrated knives with wooden handles for my birthday. The brother I love.

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