Botis.

Alzheimer’s is a fatal disease with a 100% death rate.  I knew that before either of my grandmothers started losing their memories.  It has no survivors and there is no cure.  In early 2013, after each of them started exhibiting symptoms, I had the opportunity to see the brain of an Alzheimer’s patient via the Bodyworlds exhibit at the Science Museum of Virginia in Richmond and it finally hit me.  The recesses in the brain were deeper, wider, flatter than those in our normal image of the brain.  Of all the things I saw that day – sculptures of skinless cadavers included – the Alzheimer’s victim’s brain affected me the most.

Both my father’s and my mother’s families are blessed with longevity; I reached my 31^st birthday with all four grandparents, which I’ve come to understand is practically unheard of.  My paternal grandfather, Charlie – even before surviving D-Day at Normandy – was transferred off an LCI ship in the Navy just days before it was sunk by Germans in World War II, with no recorded survivors.  He returned stateside after the war, started a family, beat cancer and still goes golfing.  Both of my mom’s parents served in the Army for years during WWII and the Korean War.  My grandfather Bob has even outlived virtually his entire outfit while my grandmother Agnes handled death and disease as a nurse for around 40 years.  Sadly, my wife is the opposite.  She lost her last grandparent when she was nine – in fact my mother-in-law was just 31 when her own mother died, at 60 – so it’s astounding to Kristy that our daughter knows all four of her grandparents, let alone has gotten to meet four of her great-grandparents.

My dad’s folks live just a few hours from us now, in the eastern part of Virginia – although they lived in the bay area outside San Francisco until I was in my 20s.  Their five sons, dad included, are scattered from New Jersey to Idaho but still make time to visit.  Family gatherings have been a regular fixture among them since before I was born.  The only time I remember going more than a year without seeing at least one branch of my extended family on dad’s side was for the four years when we lived in Hawaii, and dad’s parents even flew out once to visit us there.  We were never as close to my mom’s family, through no real fault of anyone’s.  Mom’s parents, Bob and Agnes, never traveled like dad’s, and having only two brothers to dad’s four made visits seldom.  My dad having twice the siblings meant making twice the trips just to see everyone.  My parents used to haggle over whom to go visit next: 

“Well, we haven’t been out to see my parents in almost four years.”

“But we haven’t flown to Colorado to see John’s new house at all.”

“Right, but that’s a plane flight and a Hell of a lot more expensive.”

“And we’d drive to San Francisco to see your parents?”

“Well, no, but we could fly into a major airport so airfare would be cheaper; and flying from O’Hare to SFO would be fewer stops, meaning fewer layovers to get Adam and Jon across the airports for; and we wouldn’t have to rent a car.”

My parents and brother and I have had that conversation for 30 years.  Out of the eight units I have between my parents’ family trees, drop two of their names into those spaces and I could even tell you which year it happened.  Then my brother moved out for college and he became an additional factor for visits, and I started my own family after college and added a small child and a wife with her own parents to visit into the mix.  Of course, often enough, the longer we go without seeing a family member, distance in the relationship grows.  Fissures form, and deepen, and widen.  You forget what they’re really like, or who they are.

So given my and Kristy’s very different family trees, we were determined to make extended family a big part of our daughter’s life from the start.  She was born in 2010, on a spring afternoon at about 1pm.  By sunset, my folks and my wife’s – all four of Lenna’s grandparents – were in the recovery room of the maternity ward with us, having driven up to north Virginia from as far away as the Georgia-Florida state line.  We’d called our parents late the previous night to tell them that our big day was approaching and they got an early start on the road to meet their granddaughter.  As for us, we took a four-week birthing class, read a stack of baby books, researched family and medical websites and realized the moment she was born that we had no idea what to do from that point forward.  Five family members and a nurse watched me change my first diaper that evening; the nurse actually had to talk me through it.  “Don’t do it for me; just tell me what to do.  Um, please.”  I’d been awake for 36 hours and I’d been directing my parents to the hospital, setting up our apartment for my in-laws to stay in, helping nurses help us, fielding strangers bringing hospital bills to our recovery room and handling a newborn, just so Kristy could get some rest.  And it all came down to me afraid to lift Lenna’s little foot up to get a poopy diaper out from under her butt.  I didn’t want to break her.

But I learned.  We both did, every day and every milestone.  Like usual, my dad’s family were there often enough.  Lenna was five weeks old and met my Uncle Dave’s family and my dad’s parents.  We sent pictures to mom’s side of the family since we didn’t see them.  But in those first few months, all the day-to-day uncertainties started to become clear.  Kristy and I were shocked at how much of parenting involved taking things as they come.  “We’ll cross that bridge when we get to it” became such a common phrase in our household I’m surprised it wasn’t Lenna’s first sentence.  Whenever Lenna cried, addressing each possible source became mechanical.  Without thinking, either of us had changed her diaper, swaddled her, burped her and started warming a baby bottle.  Muscle memory stuck.  Like family, memory is easily taken for granted.

13 years passed between two of my visits to see my grandmother Agnes, the nurse; and my grandfather, Bob.  Back then, I was 18 and in high school.  I was on a flight into the Albany airport, near Bob’s and Agnes’s house.  My girlfriend at the time had come to pick me up and take me to look at colleges in New York and Bob and Agnes had offered to take us out to dinner.  I stepped off the plane in a ripped sleeveless jacket and my hair fashioned into liberty spikes with Elmer’s glue.  I’d dyed it red with food coloring and wore a spiked bracelet on one arm.  My grandparents took one look at me, said they couldn’t stay and walked us to my ex’s car.  The next time I saw them I was 31.

I would’ve done the same thing.

We had to move in with my parents when Lenna was about six months old.  They have a Georgian-style home in a nice neighborhood with three more bedrooms than our old apartment.  My mom still spoke with Agnes and Bob every week on the phone but I hadn’t even talked to them in several years, let alone seen them since my bratty punk days.  Mom would say “My poor mother is so confused…” in equal parts bafflement and worry, but I didn’t take it seriously for a long time.  I cared, and was concerned, but I told myself it was likely just slight memory loss that comes with age.  I had more immediate concerns.  I’ve got to get Lenna to stand up on her own; I can’t worry about Grandmother Agnes right now, I thought.  Then it became I’ve got to get Lenna to walk.

We have to move her to solid foods and off the baby bottle.

She needs to learn to talk.

Lenna needs to know when to say “please” and “thank you.”

Suddenly there was a Potty Training Elmo on mom’s hardwood living room floor and I couldn’t stop staring at it because I’d just been told that my grandmother was going to die.  I still had no idea how well my daughter was developing, I’d just done the paperwork to start my business and somehow I’d managed to neglect my grandparents for a solid decade.  There was still some time, as Alzheimer’s is a slow killer, taking up to eight years before making its final strike.  Nonetheless, it was blooming on the horizon like the darkest of storm clouds.  One look at the brain in the Bodyworlds exhibit and I realized what was happening to my grandmother, physiologically.

Over the next two years, everything in Agnes’s past became unclear.  First she started asking my mom how college was going for my brother and me, although we’d graduated six or seven years prior.  Then she forgot who we were.  By Thanksgiving 2013 she fell and broke her hip, and when mom went to help her recuperate, Agnes had forgotten her most of the time too.  Bob used to let Agnes sit alone and watch some TV, only to return and find her shaking and afraid because she didn’t know who he was or what she was doing in his house.  They bought that house together in the late 1950s and hadn’t moved in almost 60 years, but she was convinced she still lived in Pennsylvania, her girlhood home.  She left a voicemail with my mother one night begging her to find her, pick her up and take her back to Pennsylvania.  “Please, please don’t give up on me,” Agnes had said.

We moved out of my parents’ house around the time that mom had made a trip to New York to visit Bob and Agnes and set up around-the-clock home care for Agnes.  It included a rotating 24-hour schedule delegated among a staff of nurses, a full pay structure and management responsibilities.  

Lenna was potty-trained and signed up for preschool for the fall of 2014 before we knew it.  As a stay-at-home father I’d always been very concerned about my own abilities to properly raise a child and I had a Hell of a test coming.  She’d be away from my supervision and in a group of 15 kids her age and a teacher, every one of them strangers, and then I’d see how she did.  I’d see how I did, for over four years.  Babies don’t come with instruction manuals, and there are so many methods to parenting that the only practice more common than “taking it as it comes” is trying to use common sense and best judgment.  So for over four years we’d been flying blind and school seemed like the course correction we could gratefully use or anxiously dread.  Or both.

Eight weeks before school started we drove to New York so Lenna could meet Agnes.  By that point, Lenna was excusing herself to the bathroom and warning us before she had to go, she knew her ABC’s and she was a polite kid.  We spent just one afternoon at my grandparents’.  Their living room was full of small sculptures and vases and ornamental things they’d bought over their entire lives, from their time in Japan where my mother was born to knick-knacks from their golf club across town.  There were pictures of their children and their grandchildren and of Lenna.  Agnes was unconscious most of the time, sleeping peacefully among these mementos of her 90 years on Earth.  Aides sat with her all day, except when a family member would sit with her; Bob sat in his den watching TV and my Uncle Rob grilled hamburgers and hot dogs for the family on the back patio.  

Lenna was a bit too shy to sit with Agnes, as most kids are with new people, but I pulled up a chair and found myself as unsure of my next step as I had been with Lenna’s first diaper.  I asked my mom for help.  “Don’t do it for me; just tell me what to do.  Please.”

“Just talk to her when she wakes up.”

And I learned.  Kristy and I both did.  I sat next to my grandmother for the first time in 13 years.  She woke up and slowly came around to look me in the eyes.

“Hi Agnes!  My name’s jonny.  I’m your grandson.”

“You are?”

“Yes ma’am.  And I’m 31 years old and you’re 90.”

“I’m 90 years old?  And what do you do?”

“I’m an author; I write books.  True stories about American life.”

“Oh, I like you; you’re a good kid.”

“I also have my wife Kristy with me here, and your great-granddaughter Lenna.”

“Oh wow.  That’s great!”

“Thank you Nana.  I’m glad to be here.”

“I’m glad you’re here too.  And what’s your name?”

“My name’s jonny.  I’m your grandson.”

“My grandson?”

“Yes ma’am. 

“How old are you?  Do you have a job?”

“I’m 31.  I’m an author.  I write books for a living and watch my daughter Lenna, who’s your great-granddaughter.”

“What are your books about?”

“I write true stories about growing up in the 20^th century, and about American subcultures.”

“Books about real life.  That’s wonderful!  Do you have a wife, or any children?”

“I do.  My wife’s name is Kristy and my daughter’s name is Lenna.”

“And what’s your name, dear?”

“jonny.  My name’s jonny.”

“What do you do for a living, jonny?”

Often she remembered my uncles but not my mother – “I have a husband and two sons,” she’d say – so she had a harder time understanding where I’d come from.  But she met her great-grandbaby and I told her all about us, each time hoping that somehow it would stick.  She couldn’t remember more than 30 to 60 seconds; it was like someone kept hitting a reset button somewhere.  Alzheimer’s is cruel that way.  It’s a slow son-of-a-bitch of a killer that takes and takes, that taunts and teases and abuses and scares and humiliates before the end.

“I have to get up and go to school now.”

“No, Nana; you’re all done with school.”

“That’s right; I’m a nurse.  Am I late for work?”

“You aren’t.  No work today.  It’s a beautiful summer day to sit and relax with your family.”

“I’m dying you know.  No more Christmases.  No more Christmases.”

“I know.  I’m…I’m sorry.  But everyone here loves you and you’re great.  You’ve lived a terrific life so far and you’re still here with us now.”

“Thank you.  What’s your name, dear?”

Lenna started school and she approached every kid in her class, both teachers and some of the other faculty and staff and said “My name’s Lenna L-E-N-N-A.  I’m four; what’s your name?”  It was hard for me leaving her at school that first day.  Mom called with her concerns over how the caregivers were watching Agnes while I expressed my own reservations about leaving Lenna with adults outside our family.  Mostly her teachers just told me she was doing “fine,” which mirrored Bob’s reports about Agnes and her nurses.  I didn’t know what either meant.  I saw that when she drew pictures she’d sign them with her name, which some kids couldn’t do, but overall I was still in the dark.

Dad called me on a Monday evening in December to tell me Agnes had passed away.  Before having the opportunity to grieve, I had to navigate Kristy’s work schedule with Lenna’s school so they could keep in their routines while I went up to New York to support mom and her family, figure out travel and accommodations and tolls, coordinate with dad and my brother about who was driving with whom when.  I went up with no clue as to my return date; I drove dad to Bob’s and Agnes’s, picking up my brother along the way. 

Alzheimer’s is the sixth largest killer in the country.  It’s responsible for 60-70% of dementia in the elderly.  Anti-vaccination doctors and groups falsely linked vaccines to Alzheimer’s in decades past, alongside the more popular scapegoat of autism.   This was after they’d tried unsuccessfully to blame aluminum as a cause of Alzheimer’s.

Dad and I stayed five days, arriving in New York on Wednesday for a Thursday funeral.  The viewing was emotional for everyone but I held it together.  I was a pallbearer and read a Joyce Kilmer poem at Agnes’s service before she was laid to rest, so I imagined I’d shed my tears after the fact.  Then none came and I felt as guilty for it as I have for anything in my life.  I couldn’t sleep well, but helped mom as best I could in sorting Agnes’s possessions and doing things around the house.  I’ve always suffered from anxiety and it flared up fiercely throughout our time there.  At one point, even after taking my daily and as-needed anxiety medications, I had a panic attack so severe I had to stand out in the snow in a t-shirt to cool down and keep from passing out.

Sunday, dad and I were back on the road to Virginia.  I was exhausted and aching from spending 1,000 miles driving a stick shift through rain and snow and sleeping about five hours a night.  The weight of the visit kept us quiet for some of the drive, but we talked amicably as we came down the New York Thruway, the New Jersey Turnpike and a handful of interstates.  We skirted around New York City, Baltimore and Washington DC before getting back home to Kristy and Lenna.  We spent the night in our apartment and the next morning I took Lenna to school.  I had talked to her, briefly and in an age-appropriate manner, about Agnes’s death.  She seemed alright, but I had no concrete way of knowing how she was doing.  How I was doing.

I’ve become friends with some of the other kids’ moms at Lenna’s school.  Everyone was kind and considerate, one even offering to watch Lenna after school so I could get some rest.  After I dropped her off, I worked on a blog for two hours in my living room and went back to pick her up at her usual time.  Before class was over, her teacher came out and handed slips of paper to the parents.  I opened it up and it was Lenna’s first evaluation report from school.  Three columns on the right read “Not Yet,” “Emerging” and “Achieved.”  On the left, a series of rows with developmental abilities and behaviors was listed, and marked under the appropriate column according to what the teachers had observed of the child in class.

“Student demonstrates ability to separate from parents/family/caregiver.”

Achieved.

“Student initiates own play activities.”

Achieved.

“Student interacts and engages in activities with others.”

Achieved.

There were 17 activities or abilities listed on the report and they all had the same outcome.

“Student completes multiple tasks of a project on their own choosing.”

Achieved.

“Student begins to associate names of letters with their shapes/sounds.”

Achieved.

And I started crying.  Hard.  In the middle of the hallway at preschool, which was lined with paintings and holiday activities and traced hand turkeys, I started crying.  In front of all the mothers empathizing with me over losing Agnes, 20 feet from my daughter finishing up her day in class, tears stained her progress report and my hands shook as I wept.  I cried for my brilliant, beautiful baby and the pride I felt for her.  I cried for every check mark confirming Lenna’s healthy development, due in some part to my parenting.  I cried for relief of holding my breath for almost five years.  I cried for her needing her mom and dad just a bit less now.  For being a good enough dad.  For being a good enough anything.  For my grandmother’s life and what terminal illness had wrought.  For the 30-second reset button.  For my own exhaustion and knowing that my mom must have felt ten times as exhausted.

For memories past and future.

*Alzheimer's facts provided by alz.org