A Slow-Motion Death
By: Todd A
Tags: Mindfulness, Life, Alzheimers, Death

Kidnapped

The two men arrived late at night. They checked into a hotel and slept restlessly. The day ahead was going to be hard. They needed to rest but it was almost impossible given their intended mission.

The next morning, they drove to an elderly woman’s house. They knew this particular woman would leave her house at a certain hour. They knew her house would be vacant for a couple of hours. Once she left, they entered the house with a key. They went room to room, going through all of her things, observing how she lived. They only took a few important items, nothing she would notice right away. They quietly put the things in an SUV and waited there.

The woman returned later that afternoon. The men waited for her to enter the house, gave her a few minutes to get comfortable, and then approached the front door. She was 87 years old, approximately five feet tall. Her husband had passed away 6 years earlier. She would offer no resistance.

The men rang the doorbell and waited for her to answer. They entered the house.

Some hours later, the door opened again. The men and the woman exited. They led her to the SUV and helped her enter. Anyone who observed them would have thought she appeared happy, unconcerned. Once in the car, the men gave her a sedative. Soon she was passed out on the backseat. The men drove through the night, ultimately taking her 750 miles away from her home.

In the morning, just as she was waking, they dropped her off at an apartment building she didn’t recognize. The room where they left her had a few of her things but this wasn’t her house. She was confused and afraid. In between the confusion and fear, she was angry.

Escape

Later that day, the woman, all five feet and 87 years of her, got out of the building without anyone noticing nor reporting the escape. She didn’t recognize her surroundings but she made a beeline away from the strange apartment building. There were no pay phones nearby. She didn’t stop to look for one anyway. She simply walked away from the unfamiliar surroundings hoping to see something she would recognize.

The landscape was different from her neighborhood. The street was not lined with row homes — those tall duplexes of New England, separated by narrow alleyways. The area where she found herself was not as urban as her neighborhood, not this block anyway. It had been years since she’d walked 18 holes of golf but she pressed on. She crossed a major intersection and again found herself in an even stranger area. Large houses here were set back from the road. Dense trees and shrubs lined the road and filled the yards. There were no gas stations or convenience stores where she could stop to gather her bearings or make a call. She was deep within an affluent neighborhood.

The police found her almost a mile away from where she started, sitting on the side of the road under a tree. She was exhausted and confused. She did not know where she was nor where she wanted to go.

Guessing she might have wandered from the apartment building a few blocks away, they drove her there and spoke to the employees at the desk who recognized her.

The employees called my father who was still catching up on sleep after driving his mother across country in the middle of the night.

Tennessee to Pennsylvania and back

This is my grandmother. She is 96 years old. She has had Alzheimer’s Disease for at least the past 8 years though she showed signs of it 13 years ago. My father and uncle drove from Nashville to Pennsylvania and back in two days after it became clear that she could not care for herself and that she would not move willingly. Since then she has lived in the memory unit of a retirement home managed by the local Catholic diocese.

This is a story of denial and persistence, guilt and love, codependence and care — by all of us.

Backstory

It’s hard to say when my grandmother started losing her mind. Even as a kid, I recognized that some of the “jokes” about her memory played out a little too long. Whenever we visited, as soon as we arrived, she used to ask my brother and me if we wanted a glass of milk. Then again. And again. We could be drinking a glass of milk and she would have asked us if we wanted a glass of milk. We knew she was excited to see us and she was doting on us. So it became a joke between us. But sometimes, like when we arrived late at night after driving all day, I didn’t want any damn milk.

When I was in college, I would call my grandparents and after a short conversation with Charlie, my granddad, I’d speak with my grandmother. It was the same conversation with her on every call, twice. She would ask me how school was going. She would ask how the weather was. She would ask me how my parents were. Then she would ask me how school was going. She would ask how the weather was…

Then we started having the same conversation three times when I called.

Milestones

In 2001, Charlie, my granddad (my grandmother’s third husband, not my biological grandfather), died. We flew to Pennsylvania for the funeral. After that, my father and uncle arranged to have grandma visit my uncle in New Orleans for a month before coming to Nashville to visit us.

Originally, the idea was to keep her out of her lonely house from September until Christmas. But on the second day of her stay in New Orleans, my uncle noticed her suitcase was neatly packed and sitting at the door. “Are you leaving today, mom?” he asked her. “Yes,” she replied even though she had no way to leave. This situation repeated itself every day for about a week until he and my dad decided to cut the trip short and pack her off to Nashville. Then the situation repeated itself in my parents’ house.

My parents gave up and took her back to her house in Pennsylvania. She’d only been away for a couple of weeks.

At some point, it became clear that she wasn’t taking care of herself as she needed to. My dad hired caretakers who visited her at home each day to make sure she ate a meal and took her medicine.

Then dad started flying up to Pennsylvania every six weeks to check on her.

Eventually, he stole her car.

When we plot out the events that led to him and my uncle surprising my grandmother at her home one afternoon (750 miles from the closest of their houses), taking her to dinner, giving her an Ativan (given to them by her doctor), and then suggesting they “go for a drive,” we can hit several milestones that show a slow, but obvious, decline of her faculties.

One of those milestones is when dad or mom discovered the gin in the bread box. Turns out, grandma wasn’t hydrating as well as we’d all thought with those huge glasses of “water.”

Another of those milestones was when dad realized grandma was still driving around and he became concerned that she would damage property or hurt someone else. So during one of his weekends there, he took her car out, drove it to a parking lot, and walked back to her house. He arranged someone to pick up the car. She didn’t notice until he’d left. And she was pretty mad. She just couldn’t always remember why.

The final milestone — the one that resulted in the kidnapping — was that the caretakers reported she was urinating in the garbage cans on the first floor. Apparently, she didn’t even go upstairs at night. She just slept on the sofa, drank all day, and peed in the trash.

So dad and Uncle Jerry hatched their caper.

The Doughnut

When the arrangements were made for the retirement home in Nashville, the staff inquired to determine how advanced her dementia was. Dad, perhaps, spun it too positively. As such, they gave her a traditional apartment. She could open the door. She could walk outside. She could run away down the street into the neighborhoods. It only took a few hours for her to try that.

So immediately, dad had to arrange with the home to move her to their “memory unit” — a special section within the home for patients with Alzheimer’s and advanced dementia.

The memory unit is shaped like a doughnut. There are rooms around the inside and outside of a circular hallway. So residents can walk all day and never realize they aren’t going anywhere.

When grandma escaped the home on her first day there, I remember thinking: what lesson is she here to teach us?

This is a lesson we learn: that the memory unit is coming for us all. Life is just a walk in a circle.

8 Years

My brother’s first child is named for my grandmother. But we don’t bring her to see her great-grandmother anymore. Grandma has been shrinking ever since I’ve known her but lately she resembles a dwarf more and more. Her posture is like a question mark. She’s lost most of her teeth. The remaining few are yellow and broken. Her hair is either too matted or too messy. She would terrify a 4 year old.

She’s been in the memory unit for 8 years, longer than any resident there. Her body was supposed to have given up a long time ago. But she just keeps waking up and eating every day. Another lesson.

This year, we went to her 96th birthday party at the home (ice cream and cake in the middle of the afternoon). Grandma ate everything on her plate. What at first seems like enthusiasm we realize to be mechanical inertia. She gets moving and there is no consciousness to stop her. Much like her life itself.

Last December, she broke her collarbone. She’d been falling pretty regularly at the home. They reported each incident to my dad. The collarbone was the most serious injury. There is nothing they recommend doing to a 94 year old woman with a broken collarbone. All of her bones are brittle and weak. They put her in a sling to keep her from injuring herself further.

At that point, the home had to inform dad that she needed more care than they could provide. He went through all the paperwork to qualify her for hospice care within the home. Independent hospice caretakers come every day to help her.

But over the past few weeks, she has rarely risen from bed without prompting. Someone has to start feeding her to get her moving. She has now reached the point where the home legally cannot care for her. So dad must start the paperwork to move her to a nursing home for around the clock care.

This is one of the lessons she teaches us: that life is full of meaningless and endless paperwork, nothing bureaucratic is simple, even dying is a road filled with forms to be completed.

The Memory Game

For decades before the diagnosed dementia, we played a memory game with grandma: repeating ourselves, knowing that what brought her pleasure was the voice of her child or grandchild on the telephone or the sight of us visiting her, answering every question or joking about how we’d already answered it.

When she moved involuntarily into the home, the game started playing us. My father’s heart would break when he visited and she — thinking we had traveled from Tennessee to Pennsylvania that day — was so sad we couldn’t stay longer. My dad would stutter as he tried to find the words to explain that we would see her sooner than she realized. He would try to get the message through that she herself lived in Tennessee and we were just down the road. But her ability to understand this simple explanation was already gone. So we lied.

“We’ll come back tomorrow, mother.”

At first, this white lie was strange to say. We knew it to be untrue. Yet it became the way we say goodbye to her. Even now, when she can’t communicate but just mumbles gibberish words and sounds in reply, my father tells her he will be back tomorrow.

That experience of lying to a person who doesn’t know any truth is so layered and complex a thing. We would walk out of the home in the early days and feel like we had to re-establish what was real. Often we’d spent a half hour with her believing me to be my uncle and my father to be himself, years younger. For a long time, she recognized my dad as “one of hers,” as he put it. My brother, mother, and myself were familiars. But each of us faded out of her memory.

We left feeling confused about our own identities but it’s easier to pretend to be your uncle than to convince an Alzheimer’s patient of reality. Ages, especially, threw her. When she could speak, she would ask how old dad was. “Well, how old does that make me?” she would then question. She never believed the answer.

My therapist once consoled me by telling me that the grandmother I knew was already gone. It was a psychologically therapeutic statement — a positive confrontation with the truth — but my internal reaction was something like, “no duh.” While my brain recognized these truths — that grandma would never understand where she was our what was happening — none of us understood how 8 years of this illogic and unreality might affect us.

Fears

I, as the sensitive, anxious child who is closer to my parents, watch in fear as I see my father exercising similar habits to my grandmother: the resistance to change, the denial of pain, the insistence on living his way, in his house — never capitulating (as I imagine he sees it). My grandma, too, never wanted to leave her house. She adopted the habit of living so tenaciously that she kept holding on when it would have been better to let go.

My father says it’s a terrible thing to outlive your money but it isn’t nearly as bad as outliving your mind.

My father can get obsessed with details. He hopes they give him control. This is what makes him successful as a solo businessman and adept at the paperwork necessary to sustain his mother’s comfort. He’s leaning into the tenacious trait he inherited from his mother. He may think he won’t be in the same situation she’s in if he just gets all the details right and gains control.

But details increase exponentially and control is always an illusion. If you want to master details, I think, you have to give up on them. Otherwise, you’ll be buried by them. Time, as my Zen priest has said, actually increases when you slow down to watch it. Details steal time. When you’re lost in details and piling more on, time will move faster and you’ll feel more out of control. So you’ll dig deeper into the details, grasping at control only to find it whizzing by. It’s a vicious spiral.

I like to imagine I’m practicing releasing my attachment to details but, in reality, I fear that my obsession with my father’s obsession with details is evidence that I’ve inherited that family trait — that I’m tenaciously holding to my version of reality, trying to convince him of it, and not flowing with the stream.

Grandma never bothered with the details. Maybe time extends forever when you don’t even consider the details of why or how you’re living. Lesson.

The Paperwork

Unfortunately, details are all that institutions are interested in. One form is a pain in the ass but one million forms are a government.

The home where my grandmother has “lived” (where she has survived, persisted, eaten, and slept) for the past 8 years can no longer care for her. This is a legal distinction as well as a practical matter. She can’t exit the building by herself in the event of a fire and they don’t have the staff to administer her care all day. So she must be transferred to a nursing home. Hospice care will continue there with more access. She’ll leave the doughnut of the memory unit. She’ll go from the circle, the Ensō, to a straight line — towards death.

But my father has to prepare a lot of paperwork to allow that to happen. She receives too much money from my granddad’s veteran’s benefits to qualify for the care she needs. So she has to disavow that income and reapply for the right care. There is some sort of fund that needs to be created to save her money for the move. I don’t understand it all. I’m not good with details.

Maybe she will die in the move. Maybe she will die some day as my dad worries over the paperwork.

If my dad and uncle had never taken her for a drive that night and delivered her to a retirement home in the city where my parents live, she’d have died in her home, uncomfortable, dirty, and alone. My dad oftens wonders if he did the right thing. And I always say, “Yes, you did.” He’d never have forgiven himself if she had fallen down the stairs in her house and lain in pain until the visiting caretakers found her. He did what he had to do — what any of us would have done — to keep her safe.

Mindful Aging

My dad and I spoke recently about assisted suicide and agreed that grandma would never have chosen that. She would never have chosen anything consciously to end her life. Unfortunately, she never did much consciously to prepare for dying at all. She’s a living example of what happens when we don’t mindfully approach death. I don’t mean that to sound accusatory. She’s taught us a lot about dying.

That’s how we frame it: we think about her life and what we learn about dying. Because that’s what frightens us the most: death. That extreme is what gives us all the room we need to conjecture about scenarios and possibilities. That’s what prompts the discussions over planning.

But what we should focus on is what we learn about aging. That’s the stream we’re all in right now. Instead of thinking of the white and the black — life and death — of it all, we should think of the grey (how appropriate) of just aging. That’s what we need to approach mindfully: our aging. I don’t know that anyone can mindfully approach death. But we can, while we retain our faculties, make those mindful decisions to age well.

My maternal grandmother did this. She made the mindful decision in her later life, to sell her house and move to a retirement home in Nashville where she would be close to one of her daughters (my mother) and some of her grandchildren. She took control of her life by not being stubborn, not clinging to the idea that things will never change if she just repeated them enough or mastered the details. She stepped into the stream.

When you try to control everything, you’re just guaranteeing that someone else will end up controlling you. There’s only the stream, or the doughnut, whatever metaphor you choose. It’s moving around you no matter what you try to do in it.

Lessons

While our everyday interactions with my 96-year-old grandma are mundane (deliver diapers, ask her how she’s doing, hear mumbled gibberish in response), our years-long experience is profound. Denial, anger, bargaining, depression, acceptance, guilt, worry, fear, exhaustion, wonder — we encounter them all in the doughnut-shaped hallway, walking in the circle.

She lives; she escapes; she breathes; she eats. The circle connects to itself.

As long as we pay attention, we keep learning the lessons: Control isn’t care. Love isn’t driven by guilt. Persistence fueled by denial isn’t living.