Mother’s Day ~ The Cemetery: Stories From Higley Hill

MOTHER’S DAY STORIES: PART ONE

Cemetery.

Recently my Dad took me to the cemetery to visit my mother’s grave. This would be my first visit since the funeral and what he actually said when he invited me to come with him was, “Let’s visit your mother at the cemetery”.

I have different ideas about life after death. I did not feel my mother’s presence in that strange place and I hated thinking of her lying in the coffin beneath my feet. We didn’t stay long. He said a prayer and I watched a wild turkey walk through the gravestones.

My father was concerned about the flowers. A pot of tulips had wilted. A hyacinth was drooping and looked weary. He doesn’t know much about gardening so I explained to him they were bulbs and if I planted them in the ground they would return each spring.

The next day I bought bright yellow shasta daisies and a spade and returned to the cemetery alone. It’s in the neighborhood where I grew up and where my Dad still lives. He runs through there almost every morning to visit my Mom.

I quickly threw myself into the task and started digging. Many of the graves around me had gardens in full bloom. Little trinkets were left at the headstones. Teddy bears, heart rocks, seashells. There is a section of the cemetery where a community of Mung Chinese are buried. On holy days the families bring hibachis and cook chicken shish kebab on wooden sticks that they leave for their deceased loved ones.

A man parked behind my car and stood by a nearby grave while I planted the bulbs. His hands were folded in front of him, his head bowed. Every once in a while he wiped his eyes with his finger. He left before I finished planting the Shasta daisies.

Walking back to my car to get a bottle of water for the plants, I passed the gravestone where the man had stood. His name was carved on the stone along with his birthdate. He was a year younger than me. His wife was four years younger and had passed away three years ago at the age of fifty-four. I wondered how often he came to visit and what these visits did to ease his sorrow.

I didn’t stay long at my mother’s grave. It felt awkward and I couldn’t stop thinking about her lying in her coffin. I set out for a walk around the cemetery, trying to remember her the way she was before Alzheimer’s stole her from us.

I had seen a gravestone years ago when my father brought me here to show me the plot. The stone was already in place with both my parents’ names on it along with their birth dates. It seemed so morbid and strange but I told him it was a nice location. The grave I was looking for had a photo of a man in his forties. He liked motorcycles and trucks. I know this because there was a collection of them placed along the grave. He had a sense of humor too. Carved on his headstone was the following admonishment: “I told you I was sick.”

I thought about other cemeteries I had visited. Mount Auburn in Cambridge with its beautiful flowering springtime trees. Boston’s historic Park Street Cemetery in autumn when fallen leaves cover the ground where Paul Revere, Sam Adams, and  Mother Goose are buried. The cemeteries in Spain where people place ashes in rows of boxes that reminded me of the post office.

My mother’s brother is buried at Notre Dame in Pawtucket, RI where large statues of angels greet you at the gates to the cemetery. At the graveside following the funeral my Uncle Eddie brought a boom box and played Judy Collins’ version of Amazing Grace. After the service, as I walked back to my car, I passed an angel resting her head on a large tombstone. I turned and saw my brother still standing by the grave with his hand resting on Uncle Donald’s coffin.

My brother visits my mother’s grave regularly and so do both my sisters.

Driving alone in my car in my Uncle’s funeral procession,  the Foo Fighters song These Days played on the radio. It was a raucous, rebellious tune with crashing drums and loud screams. I irreverently rolled the windows down and played the song really loud.

One of these days the clocks will stop
and time won’t mean a thing
One of these days your eyes will close
and pain will disappear
One of these days your heart will stop
and play its final beat

My Uncle fell ill suddenly. He didn’t feel well on his annual road trip from Rhode Island to Florida where he wintered. The doctors in Florida told him he had liver cancer and his prognosis was not good. He had only a few days to live. He gracefully accepted the news and told them he was seventy years old and had lived a good life that had come full circle. All he asked of them was that he not suffer. He went home, ordered a hospital bed, and placed it at the window with the view of Fort Lauderdale Beach.

He was a gay man back in a time when many people were “still in the closet” and he didn’t “come out” until his divorce after ten years of marriage to my Aunt Linda. I remember she always liked books and one Christmas she gave me a copy of V.S. Naipaul’s A House for Mr. Biswas. I don’t know where she is now. I haven’t seen her in decades. Memory is a tricky thing. I don’t know why these are the random thoughts I keep and why I am sharing them here.

My mother’s last years were difficult. On the other hand, her brother called his friends and invited them to visit him in his final days. He told them there would be no tears and if anyone cried they would have to leave. This was to be a celebration of life. I admire him for this and his bravery in the face of the unknown.

My mother entered the scary unknown long before she died and her last weeks were difficult.

There was a graveyard in New Brunswick, Canada that my husband and I stopped at while vacationing in the Atlantic Provinces. We were looking for the grave of the young daughter of a man, Al LeBlanc, who worked with my husband. She died along with five of her high school teammates on an icy night after a hockey game. Their car slid off a bridge and crashed through the ice. They are buried side by side, their pictures on the headstones.

While they worked together painting houses, Al would talk to Rich about the sadness that pervaded his marriage after the accident. His wife never recovered from her loss and would often say, “We never should have moved back to Canada.” As if, had she not made this one choice, she could have saved her daughter from the tragedies of life.

I never met my father-in-law but I have visited his grave in the town center of Sudbury, MA. Also buried In this graveyard are the children of two people my husband knows well. Placed at the headstone of infant twins who didn’t live long after their birth are toy cars and plastic ponies and teddy bears. The other grave had fresh flowers although the teenage boy who was killed in a motorcycle accident died many years ago. The last time I visited this cemetery I was not yet a mother myself but I understood a mother’s heartbreak must be one of the deepest of all sorrows.

Not long ago I visited a very old, neglected graveyard in Vermont with a friend of mine who is a stonemason. Rows of tipped headstones made from thin slabs of granite were hard to read. The inscriptions were worn from time and weather. A few of the gravestones were fused to trees that had grown up around them. Loved ones no longer visited this place. Instead Nature wrapped her arms around the deceased and covered them with moss and dried leaves.

My friend told me about the art of stonemasonry as we walked through the cemetery. He pointed out the poorly constructed stone arch at the entrance to the cemetery and we looked for small rocks for chinking. I had just started my fourth novel and in that graveyard in Vermont a character came alive that day.

James Salter once wrote, “There comes a time when you realize that everything is a dream and only those things preserved in writing have any possibility of being real.”

All of these memories swirled through my mind as I planted flowers at my mother’s grave. I wasn’t thinking about her and this left me feeling sad. Where was she? Where were the free floating memories that should have come to me as I knelt by her grave? Instead I felt awkward and forced to think about her in this uncomfortable place.

Memories come easier in places where I once shared a day with someone. Music and photographs also trigger memories. Or making scrambled eggs with onions.

It wasn’t my mother who made her eggs that way. It was a friend of ours who died too young. Anytime I make scrambled eggs with onions I am transported back to a beach house in the sand dunes on Cape Cod where Mark made the eggs with onions. He didn’t ask if everyone liked their eggs that way because he automatically assumed we all  scrambled our eggs with onions.

That moment in time with a friend who is now gone ended up in my third novel, Life Is All This. I gave it to a character named Timothy who also died too soon.

James Salter also said, “Writing is not a science… every writer I know and admire has essentially drawn either from his own life or his knowledge of things in life…. Almost all great books have actual people in them.”

My mother didn’t like to cook. She was a homemaker, someone who loved to decorate and sew. She made curtains and reupholstered chairs. One year she made Easter outfits for me and my sisters that included pillbox hats like the ones Jackie Kennedy wore.

My mother had a difficult childhood. Her father worked in the textiles mills in Pawtucket, Rhode Island and when she was very young he contracted pleurisy. He was bedridden for a long time and my grandmother had to go to work. They had no family to pitch in and daycare was nonexistent in those days so they brought my mother to a nearby orphanage run by French speaking nuns.

I remember the stories my mother told us about the orphanage. The rows of beds, the bowls of peas that she never ate again once she left. How she hated it there. When my daughters were young we loved reading the Madeline books. My mother said she never read those books to us because it reminded her too much of her time in the orphanage.

Her parents would visit on Sundays and bring her gifts that the nuns would later take from her because the other girls were truly orphans and no one brought them presents. I can no longer remember how long she stayed there but she carried those memories with her all her life. She was a nervous, anxious woman and often had migraines. I remember the smell of vinegar on the damp facecloth she put on her forehead when she retreated to her dark bedroom.

After her parents financial situation improved and her father got better she returned home. Because they both worked, she spent her summers in Brooklyn with her Aunt Jeanette and Uncle Pete. They were childless and at one point wanted to adopt my mother.

Uncle Pete was from Sweden and captained a tugboat. I loved the stories my mother told about riding with him along the Hudson River. She also met an older gentleman on the rooftop of their apartment building. He was a painter and he bought my mother an easel and taught her to how to paint. I have one of her paintings in my home in Vermont- a couple riding in a sleigh through the mountains. A memento of my wedding in Lake Louise.

After the fire at my parent’s condominium my mother’s Alzheimer’s worsened. She spent six weeks in a hospital In Providence where the doctors tried to adjust her medications and calm her down. She slept all day and at night ran through the halls calling for her mother and father. Her memories were gone but somewhere deep inside was the little girl who didn’t understand why her parents brought her to an orphanage.

My mother never blamed her parents for what happened. It was the Depression, times were hard. She understood that none of us are perfect and life is often hard. We are often faced with difficult choices or no choice at all. Years later, when I was what my mother considered a rebellious teenager, she  would call her mother every day and ask for advice.

I don’t know that my Mom ever really understood me but I do know that she loved me. Although I was never as close to her as my sisters’ were I never doubted her love.

I was an adventurous risk taker and unconventional. All my mother ever wanted was a conventional life. She was an anxious worrier. Bob Dylan once said, “People have a hard time accepting anything that overwhelms them.” My mother often worried about me and I think some of the things I did overwhelmed her. She didn’t understand choices like quitting a good job to backpack through Europe. To her, security meant everything.

Now that I am a mother I have come to better understand my own mother and my grandmother. Being a mother is one of the most difficult jobs you will ever do, and it never ends. Life is full of sadness and loss when all you want for your children is joy and happiness.

Two days after I planted the flowers at my mother’s graveside I found myself unexpectedly not returning home to Vermont. Instead I was flying across the country to Lake Tahoe to help my oldest daughter move to Colorado.

After arriving late at night and before driving to Tahoe, I spent the night at a hotel in Reno, Nevada. My Dad texted me at six a.m. on the East Coast. It was three a.m in Nevada.

His texting has improved. He no longer writes sentences without spaces between the words. This is what he sent:

You did good work on the grave mom will love them dad

To Be Continued…..

The Book of Love: My Mom’s Alzheimer’s Journey

My mom’s Alzheimer’s journey ended on Wednesday. She died peacefully with her family by her side. There are more chapters to this story that I have been sharing with you but at the moment I am sitting here alone in my daughter’s Providence apartment waiting for my husband to arrive and join me at the wake and the funeral. I am not religious. I know these rituals help others but for me it’s a struggle.

For me songs are like prayers.  This one is for my Dad who lost the love of his life, his wife of 60 years. When we told him he had given her a wonderful life, he said, “No, she gave me a wonderful life.”

A 4TH OF JULY TALE: STORIES FROM HIGLEY HILL

Monday, July 4, 2016: My Dad is 83, my mother is one year younger. Maybe I should have written that sentence the other way around. My Mom is 82, my father is one year older. At 59 years old, I am their eldest child. No one is feeling young around here at the moment.

In the month of June, shortly after I left the Inn to move to Vermont and finally had time on my hands to get away, I started driving from Vermont to Rhode Island to try and help my Dad fight bureaucracy. I’ve been getting nowhere. There is no direct route from here to there, and I mean that in many ways.

To physically get to Rhode Island I travel various routes and state roads from Southern Vermont through Massachusetts to Warwick where my parents raised me and my siblings, and lived most of their lives until they lost their condo in a fire on February 21st of this year. I pass through old mill towns and other forgotten places that have been riding the riptides of American prosperity and poverty over the past several decades. Cities like Brattleboro, Leominster, Fitchburg, Worcester, and smaller towns like Millers Falls, Athol, Pawtucket, and Slatersville.

woonsocket downtown

Downtown Woonsocket, RI

A distinctive feature of the landscape I pass through are the empty old factories, many with the tall brick chimney you can see from a distance, the mills where textiles, costume jewelry, and furniture were once Made In America, they are no longer the beating heart of impoverished ghost towns where meth and heroin addiction are serious problems. Interstate 91 also travels through these parts and is now referred to as the Heroin Highway. The issue became a hot national topic when presidential candidates went begging for votes during the primaries in the New England states.

Woonsocket empty building

Empty building in Woonsocket, RI

What I am doing in Rhode Island is visiting lawyers and barging in unannounced at the offices of the woman who runs the condo association and the guy who was the property manager until he got fired.

One early morning I followed my Dad through downtown city traffic that turned into local suburban strip mall traffic, until we finally finished our day’s business and headed south through beach traffic on Route 95. I don’t know how this 83 year old man does it, running endless errands that require trips to city hall to notarize something and visits to insurance agencies to argue about claims adjustments and deductibles, but I can tell you he is exhausted and beaten down.

Woonsocket for sale

Restaurant for sale in Woonsocket, RI

He doesn’t handle adversity well. He lived in a time when the GI Bill put him through college, a teacher’s union fought for his pay raises and healthcare benefits, and his retirement has been covered by a generous pension. He was able to put his kids through college with the help of Pell grants, scholarships, and our summer earnings. He retired and traveled the United States, whose history he taught for thirty-two years, and also made it to several European countries. I look at my generation and wonder how we got from there to here.

Woonsocket reflection in window

Another empty building in Woonsocket, RI

Life was good. He had healthy kids, no major illnesses, no lay-offs or financial worries. He never acquired coping skills to weather the bad times and is now ill-equipped for the perfect storm that has hit him. My mother’s Alzheimers’ and the fire at the condo are too much for him to handle at this stage in his life.

There are various reasons given for why nothing has been done over the past four months to get the six unit owners back into their homes after being displaced by the fire. None of them are good, most of them are excuses for incompetence and mismanagement. It’s a common case of he said, she said.

I made an appointment with the consumer reporter at WPRI News to meet me at the condo and tell my family’s story on camera but the staging for the roof had finally arrived and the condo association promised the work would begin on Monday, the day before my mother’s 82nd birthday. Flag Day. My Dad asked me to give them a second chance.

Woonsocket radio

Former radio station seen through the window Woonsocket, RI

A week later I was back in Rhode Island. My mother had settled down, the meds were working, and after five and a half weeks on the geriatric psych floor of a hospital in Providence, they had found a bed at a nursing home not far from the condo. I was going to meet her there, along with my Dad, when she arrived by ambulance, and help get her settled in. After crossing the Rhode Island border I got a phone call from my sister informing me that the woman who handles the nursing home’s admissions was on vacation and paperwork had been misplaced, things got overlooked, the bed was given to someone else. Blah, blah, blah…….

I can’t describe what I was feeling, the words I was yelling loudly, alone in my car as I swung into the parking lot of the condo. Not that this was their fault, but they had their own string of fuck-ups unrelated to the nursing home and I needed to yell at someone. I took a few deep breaths before calmly walking into the office where I wanted to see some heads roll and get some real, not bullshit answers about why the work hadn’t started on the roof as promised.

Woonsocket Parms building

Corner building Woonsocket, RI

More excuses were given, something having to do with permits, hurricane regulations…. I stood and listened to the background noise of bullshit while trying to control my temper. It’s the property management company’s fault, they’ve been fired, the condo has detailed notes of the steps they’ve taken to rectify things, the owners could have the possibility of suing the property management company for rent money as this project is going to take awhile and no one will be moving back into their homes until mid-October. Best case scenario.

“Have you been updating the other tenants on all of this?” I asked.

“Yes, we send out emails. Your father’s on the list.”

“My Dad lost his computer in the fire. He doesn’t have a smart phone and he was never very good at email to begin with. Two weeks ago my mother wasn’t doing very well in the hospital and we thought she might not make it. My Dad told me he wanted to bring her home where she could lay by the window and look out at the Narragansett Bay. Then he got choked up and said, I can’t do that because I don’t have my home anymore.”

I was playing the sympathy card.

“We’re doing our best. It’s moving forward now. These things take time. They’re starting the roof tomorrow.”

Oh really?

The following day, I walked from my sister’s house over to the condo and took photos of the hole in the roof covered with a bright blue tarpaulin blowing with the wind off the Narragansett Bay. There were two roofers in the portico where my Dad used to park his car. They were eating and drinking coffee. In the office they had told me they would be working inside today on something called a two hour firewall. I had driven three hours from Vermont and again I got nowhere. There is no easy way to get from there to here where I was now standing, feeling lost and helpless in the wealthiest nation in the world where I hear we have the very best workers, the very best healthcare, the very best of everything.

So they say. I got in my car for the three hour drive back home to Vermont.

Outside of downtown Providence, not far from the on-ramp to Route 95 North I passed a junkyard full of discarded American trash, things people no longer want. A pile of consumer detritus. An American flag flew in front of it all.

Providence Trash

Providence Trash

Not long into my journey I pulled off in Woonsocket to take a walk and find a cup of coffee. The only times I ever came to this mill town were on the school bus when I was a high school hockey cheerleader. Yes, I was a cheerleader. Any time I find myself playing the cocktail game Three Truths and One Lie, the “I was a cheerleader” fools them every time. Most people believe the lie “I shoplifted when I was in high school” and think the cheerleader is the lie. I’m not sure what this says about me but it wins me the game every time.

Woonsocket Blackstone River

Blackstone River Woonsocket, RI

I parked the car along the Blackstone River that once provided the water power to the textile mills that closed during the Great Depression then were revitalized during World War Two only to close again in the 1980’s, the decade of Ronald Reagan, that led to the 90’s when Bill Clinton signed NAFTA. Since the factories closed for good, unemployment remains high. In March 2013, the Washington Post reported that one-third of Woonsocket’s population used food stamps, putting local merchants on a “boom or bust” cycle each month when the EBT payments were deposited. The median income for a family of four is $38,000.What I mainly saw on my walk through town was bust and very little boom. Across the parking lot was the The Museum of Work and Culture where a few school busses were parked but other than that the city was quiet.

Woonsocket Bienvenue

Welcome to Woonsocket

Woonsocket is referred to as the most French-Canadian city in the United States. In the early 1900’s a large wave of immigrants crossed the border from Quebec to work in the New England mills. My grandfather, my mother’s father, was one of them. He first worked in a textile mill in Newmarket, N.H. not far from where I lived in the house on River Road for 23 years, then he moved to Pawtucket where he met my grandmother and eventually became a U.S. Citizen. I am not sure if he crossed the border legally. All the years I knew him he spoke broken English and called all of his grandkids Joe because he couldn’t remember our Irish names.

At one point, 75% of the population of Woonsocket spoke French. A French language newspaper was published here and French language movies were shown at the local theater.

Woonsocket newspaper

Woonsocket newspaper

As I walked the city streets I wondered if my grandfather, and my father-in-law who was also a French-Canadian immigrant, were ever accused of being rapists and thieves. Did English speaking Americans complain when a shopkeeper spoke to them in French? I know my mother spoke French until she was eight years old and then quickly learned English to fit in, like most children of immigrants eventually do. When my siblings and I studied French in school she was very little help, having forgotten her first language. I often wish she had raised us to be bi-lingual. The Bienvenue sign painted on a brick building gave me hope that somewhere in America’s angry heart immigrants are still welcome on these shores.

I never did find a coffee shop but I took a lot of pictures before I left. I spent the rest of the drive home passing through more of America’s discarded cities and thinking about that pile of trash on the outskirts of Providence. I fantasized about renovating the lovely old empty buildings in Woonsocket set along the river where you can go kayaking or drive a few miles out of town and hike Purgatory Chasm. It’s not a bad place to live.

Why can’t we work with what we have? Why can’t we revitalize our cities? I asked a lot of questions with no one riding shotgun to answer them. My younger daughter is flying into Frankfurt, Germany next week to study at a wine institute in Koblenz. I flew out of Frankfurt over thirty years ago. It’s a very American looking city rebuilt by Americans after we bombed it during World War II. Clearly we are capable of revitalizing cities.

Rents are rising everywhere. The homeless population in San Francisco is reaching a crisis level. Couldn’t some hot shot techies move to places like Woonsocket and work from home on their laptops? Open a few decent restaurants, improve the school systems….? But wait a minute, that would take a village as someone once said. A society that believes we are in this together and when one city fails we as a society fail too. How is that going to happen? A few days earlier Congress couldn’t pass one single bill to enact a sensible gun law after the Orlando shootings. They couldn’t agree that those on the no-fly list shouldn’t be able to buy a gun. How the hell do we expect to get anything done if we can’t all agree on that?

My radio went in and out as I traveled the highways. Hitting the seek button I found some public radio where they were discussing the two years and seven million dollars spent on the third Benghazi investigation which has reached the same conclusion as the other two hearings. I thought about Woonsocket and other towns and what they could do with seven million dollars. Frustrated and disillusioned, I hit seek once again and found some bluegrass.

Back at home I sat on the deck and watched the sun set over Haystack Mountain. It’s now a private ski mountain. You have to be a member. Golf courses and country clubs have been like this for years. I walked many a private beach in Florida because like the Native Americans I believe the coastline doesn’t belong to any individual just as the air we breathe is also something we cannot own.

I recently heard of someone who received a phone call from a renowned surgeon on a Sunday afternoon. I also read about a lake that received environmental protection and tax-exemptions that reduced the wealthy homeowners property taxes in exchange for public hiking and fishing rights, however the townspeople can’t get past the gates and No Trespassing signs. It is they that bear the brunt of the reductions in the tax base that covers schools and fire departments and other social services, but no they can’t fish in these waters.

The folks with the big lake homes and private ski mountains are a small minority who have access to power. They don’t want to fish and golf and ski with you and I, and the way things are now in America, they don’t have to. We all bear the brunt of their privilege.

On this 4th of July evening while my husband golfs at the public course over at Mount Snow instead of the course at Haystack because that is now private, I look out at the setting sun and think about Vermont and how far away it feels from the rest of the world’s chaos, despite that damn private mountain. I wonder if New Zealand is like this, only better. I think about what it would be like to up and move to the other side of the world. I’m pretty good at picking up and relocating. But then I remember the words of Barbara Kingsolver that I recently read in her collection of Essays From Now or Never: High Tide In Tucson. It is from the essay Jabberwocky.

“A country can be flawed as a marriage or a family or a person is flawed, but “Love it or Leave It” is a coward’s slogan. There’s more honor in “Love it and get it right”. Love it, love it. Love it and never shut up.”

I am not about to shut up. If you’re listening, let me hear your questions and maybe together we can find the road from here to there.

 

The Road To Providence

Joan Didion once wrote, “We tell ourselves stories in order to live” and I believe this is true. I don’t know how to write this particular story but I feel compelled to share it.

Tragedies that make the evening news occur every day. Someone gets shot in a movie theater or at a school. Tornadoes tear through towns, floods wipe out neighborhoods. There are accidents on highways and dark country roads.

Late Monday afternoon, I found myself laying by my mother’s side on a bed in my aunt’s condo. Sunday afternoon the townhouse next to my parents’ place caught fire and spread to their unit via the roof. They made it out safely but their home is destroyed from smoke and water damage so they are currently staying at my aunt’s place just across the parking lot, while she is vacationing in Florida.

My parents have been struggling with illness and aging for quite some time now. I have only occasionally written about my mother’s Alzheimer’s. It is difficult and hard to share a private, personal story. Over the last few months, as often as I can, I make the two and a half hour trip to Rhode Island from the inn where I work and live in the remote northwest corner of Connecticut. Like many people, my siblings and I juggle demanding jobs, parent our own kids, and try to help our elderly parents when we can, but the brunt of much of this falls on my sister who lives close by.

My mother is disorientated. She wants to go home. She doesn’t understand why she can’t sleep in her own bed. Last night she stayed at my sister’s house and today she is here, and she is tired and upset.

My Dad went to Walmart to buy some essential things — underwear, T-shirts, a couple of sweaters, and a nightgown for my mother. It is a soft purple fleece and she is covering herself with it like a blanket. She wants it to cover her feet but each time she sits up it falls out of place. I tell her to lay still and I will fix it. She also wants the sleeves to fold over her chest but then decides she would like the sleeves tucked beneath her back. We continue to arrange the nightgown for quite some time. I straighten it out, making sure there are no wrinkles. I tell her it is nice and neat, “no wrinkles, it looks perfect.” She keeps telling me her house is spotless. “Nice and clean. Not perfect, but almost perfect.”

“Your house is always perfect,” I tell her.

“I work very hard,” she says. “I clean all day. For hours and hours.”

“I know you do.”

“You’ve been to my house?”

“Yes, many times. You decorated it very nicely. And it’s very clean. Spotless.”

“This isn’t my house. I want to go home. I’m tired.”

She knows something is wrong with her house and is worried it may be dirty. It is actually very dirty. The floors and carpets are covered in black muck from the roof and the insulation. It was heartbreaking to see and although my father didn’t bring her back there today she knows something is very wrong, but she isn’t sure what.

I hold her hand and show her pictures of my daughters, her granddaughters, on my IPhone. “I have four daughters,” she tells me. “They all live in New York.” She has three daughters and one son, and none of us live in New York, but I don’t correct her.

“You like New York, don’t you? Do you remember when you were little and spent the summers there with your Aunt Jeanette?”

“Oh, you know Jeanette?“ she asks.

“Yes, I do. I didn’t know her husband Pete, but I know you used to ride with him on his tugboat on the Hudson River.”

She nods and points to a picture on the wall. It is a reproduction of the famous painting Pinkie by Thomas Lawrence, a woman in a flowing white dress wearing a pink bonnet with long pink ribbons.

“I painted that picture.”

My mother used to paint. I have a picture she painted of a red sleigh crossing a snowy field beneath a mountain. It depicts the sleigh ride my husband and I took after we got married in Lake Louise. I am worried about her paintings in the townhouse but my younger sister is over there now trying to salvage the old photos and the paintings, the priceless things that have no real value but are priceless nonetheless.

“That’s beautiful,” I tell her.

“She’s a friend of mine,” she says.

My father has been offered five days of respite. Hospice has been available to him for over a month now. My mother eats very little, she insists her doctor has told her she can’t eat food anymore. She weighs eighty-four pounds. This is considered an end stage symptom of Alzheimer’s, which makes her eligible for hospice care.

Tuesday morning my younger daughter offers to come with me to pick up my parents and drive my Mom to the hospice home where she will be “taking a little vacation”, my father tells her. She isn’t paying attention, she has no idea where we are going.

The place is lovely. We walk her to her room where they already have her name on the door. She sits in the chair by the bed and talks to the nurse about her house which is spotless. “Your house is clean, too,” she tells the nurse, looking around the room, checking for dirt and dust.

We kiss her before leaving the room. I tell the nurse she should be prepared for some serious separation anxiety. My Dad has to have a procedure on Wednesday to check on the bladder cancer he’s been diagnosed with. He has insurance to deal with, and he needs to find a place to live for the next six months or more. He has a lot on his plate. I reassure him it’s okay not to visit during this five day respite. It will just set my mother back. My sister and my aunt will come.

We drive my Dad back to my aunt’s place. Although overwhelmed and sad, it appears a huge weight has been lifted off his shoulders. He has been trying to do the impossible for four years now and finally he has some help.

After I drop my daughter off at her apartment, I begin the drive from her ethnic, urban Italian neighborhood in Providence to the quintessential New England town in the southern hills of the Appalachian mountain range where I live and work at the inn. In between, I pass through rural farmland and old mills in northwest Rhode Island and eastern Connecticut where the blown-out windows of abandoned factories are wide open to the elements, just like the roof at my parent’s townhouse.

Unemployment, lack of opportunity, and heroin addiction are the problems facing a lot of people who live here. From the poor neighborhoods outside of Hartford with their boarded up buildings, pawn shops, Jamaican bakeries, and convenience stores that accept EBT to the wealthy enclaves of West Hartford where people shop at Whole Foods, I get a snapshot of income inequality in twenty-first century America.

I think about whether or not I should tell this story and if I do, how will I write it and why would I write it. I don’t have a large following and I don’t sell a lot of books. I’m a small voice in a loud, brash world where outrageous behavior attracts attention, money talks, and the right connections open doors. Will anyone be listening? Does anyone care?

I lean toward slice of life stories with anecdotes about daily life. I often see the personal through a universal lens. On the road home from Providence I begin to think about the definition of providence, which is the foreseeing care and guidance of God or nature over the creatures of the earth. In a Google search of definitions I also find this: “your circumstances or condition in life (including everything that happens to you); “whatever my fortune may be”; “deserved a better fate”; “has a happy lot”; “the luck of the Irish”; “a victim of circumstances”; “success that was her portion”.

I think about the ‘heterogenous mass’ as Walt Whitman called the ‘many in one’. My story is the story of one daughter, one family, touched by an unexpected tragedy that made the evening news, but it is also the story of the human condition and how we all have more in common with each other than not, and I suppose that is the calling to write. To share the stories, to help each other through the hard times without feeling so alone.

Mom at Matunuck

A St. Patrick’s Day Phone Call

We ate the corned beef a day early. I went grocery shopping at Publix, where of course the corned beef was on sale. Because it’s only the two of us these days, I searched the shelf for a small one. Then I bought sauerkraut, Irish Swiss cheese –I know. Who knew there was such a thing — and marble rye.

I’m sure you thought I was going to say I bought carrots, cabbage, and potatoes. Although  Rich is also half Irish, he hates corned beef and cabbage. Every year the girls and I would eat the boiled dinner and he would make himself a Reuben. Then they started wanting a Reuben. “Now I’m making two dinners?” I complained. So, I gave up on the boiled dinner and we all ate Reuben’s.

I am working all day in Pompano Beach on St. Patrick’s Day, so when I got home I put the corned beef in a pot of water with the seasoning packet that came with the meat and as it simmered in the pot, I called my eighty-two-year old father. My sister had told me he was in a minor accident. It happened in a grocery store parking lot. A ninety-three year old lady hit his driver’s side door. No, he doesn’t live in Florida. This happened in Warwick, Rhode Island. Luckily, no one was hurt.

I told him I was cooking corned beef.

“Tomorrow’s St. Patrick’s Day.”

“I know, but I work all day and don’t get home ’til six. I sold my crockpot at the yard sale when we sold the house.” I didn’t tell him about the Reubens.

“Did you buy the red corned beef?” he asks.

“Yes.” We always buy the red corned beef. I am not sure what makes it red. I am not sure what kind of meat it is, but apparently there is also brown corned beef. I think it might be called brisket. Which is a Jewish dish my father would tell you. We never buy that one. The Irish eat red corned beef.

There is a well repeated story in our family of how my mother made the brown corned beef the first St. Patrick’s Day she was married to my father. She had only eaten corned beef once before, when she went to her future Irish in-laws for dinner. She is French Canadian. She didn’t know there were two kinds. Apparently my Dad was upset about the brown one but he grinned and ate it for his new bride. She never made the brown brisket again.

She cooked her corned beef and cabbage in a pressure cooker which used to scare the hell out of me. I always envisioned that whistling top flying off the pot and taking my eye out. My Irish mother-in-law cooked just about everything in her pressure cooker, including meat loaf and asparagus. The meatloaf was tasty, the asparagus was inedible. She also made a mean, as in good, Irish soda bread.

She told me a story about the time the top did fly off and hit the ceiling. I knew that thing was dangerous and could take your eye out. After she passed away, we sold not one but two pressure cookers at the yard sale.

My dad put my mother on the phone. “It’s Sheila, your daughter in Florida,” he told her before handing her the phone. We had our usual conversation, starting with the weather. I asked her if the  snow was melting. “Oh, I don’t know,” she says. “How do you like your place?”

We’re moving right to the real estate conversation. She knows she used to live in Florida. She can give you vague information about the places they lived down here. She loves the place she lives in now along the Narragansett Bay. “It’s the best place we’ve ever lived.” She describes it to me as if I’ve never been there.

I tell her my place is very similar. “So you like your place, too?” she asks. I can tell from her voice she is asking this question with a smile. When she had more stories to tell, she would talk about how they moved from a smaller unit to the bigger one with the water view. She still remembers some of the real estate deals they made throughout the years although she doesn’t remember my name. Her homes are one of the last memories she holds on to.

That and cleaning the house. My parents came to Deerfield Beach this winter and stayed in a hotel room with a small living room. She told me, “This place is great. We really like it here. We have a maid but I told her she didn’t have to make the bed. I do that.”

“You know your mother,” my father said. “She always liked to clean.”

My sisters and I believe she would have made a wonderful real estate agent.

I asked her if they were having corned beef and cabbage tomorrow for St. Patrick’s day. She said, “I don’t remember what that is.” I could almost see her shrug her shoulders and smile. There was a time when forgetting made her nervous. I was happy to hear her matter-of-factly tell me she didn’t remember.

“That’s okay,” I said. “You never did like corned beef and cabbage.” I tell her about my husband making Reubens. She laughs but I’m not sure she understands my story.

My father comes back on the phone and tells me he invited a widow from church he and my mother have become friends with and my aunt, his sister who lives in their same condo complex, over for tea the other day. He went to the store and bought cookies to serve with the tea.

“Really?” I ask. My father is not a social butterfly. He likes his solo activities. Running, reading, biking. He only learned to cook when my mother no longer could.

“Well, I thought they should meet each other. They’re both alone.”

“And it’s good for you, too,” I said. “With Mom, you know?”

“Oh, she’s fine,” he says. “She does great. She does tell the same two stories over and over again, but she’s good.”

My father amazes me. Never an openly affectionate man, his love for my mother during this difficult time has been truly beautiful. And he’s a very brave man. Not only did they recently fly to Florida, but last Fall they took a cruise along the Mississippi River. My siblings and I were extremely concerned about this. What if he loses her in the airport? She can’t walk well. What if she fell and broke her hip? But they loved the trip and my Dad was able to attend some lectures on U.S. History along the Mississippi. They ate at a blues club in Memphis. He’s talking about a trip along the Northern route next fall.

My husband made the monster Reuben’s last night. We once again joked about how our St. Patrick’s Day dinner has turned into a Jewish Deli sandwich.

When the meal was done and we were cleaning the kitchen, I wished I’d bought a larger red corned beef. There was hardly enough leftover for tomorrow’s lunch.

 

corned beef

As I shut off the light in the kitchen, I smiled as I was reminded of one of my favorite lines from Annie Hall.

“There’s an old joke – um… two elderly women are at a Catskill mountain resort, and one of ’em says, “Boy, the food at this place is really terrible.” The other one says, “Yeah, I know; and such small portions.” Well, that’s essentially how I feel about life – full of loneliness, and misery, and suffering, and unhappiness, and it’s all over much too quickly. ” ~ Woody Allen as Alvy Singer in Annie Hall

Time Is An Asterisk-My Mother’s Battle with Alzheimer’s

 

Three hundred five days ago I started a blog with the goal of walking every day for a year. My year of walking and blogging about it is quickly approaching its conclusion, but for the past three days I haven’t walked. My parents were visiting and my goal was to give my father a break, some time to himself. My mother has Alzheimer’s and my Dad is her primary caregiver.

She can’t walk very well. Her knee bent and twisted from arthritis, she limps and sometimes trips over her own two feet. My 82-year-old father, despite a heart attack, two stents and a pacemaker, runs four miles every other day, but my mother can no longer be left alone so it’s hard for him to carve out time in his day to do the thing he loves. Running, alone, just him and the pavement and the passing scenery. If one day a second heart attack should take him while he is out jogging, he will most certainly die a happy man.

I hadn’t seen my parents since the summer. I live a thousand miles south of them, in sunny Florida. My mother and I spent our time together sitting on my deck, drinking tea and talking, while my father ran, or walked to the beach with his book and a chair.

Memory is tricky. We forget where we put our keys or why we went upstairs. Was I looking for something in the bedroom? Yes, that’s right, I need a sweater.

Get a group of siblings together discussing an event that happened twenty years ago, and everyone has a different story, colored by the feelings and whims of each person recalling the event.

“Remember that time at the lake when Danny cut his foot on a broken bottle?”

“That wasn’t Danny, it was Karen.”

“It wasn’t at the lake, it was at a motel near Niagara Falls.”

You’re left wondering if you were on the same vacation with these people. Sometimes you even wonder if you grew up in the same family.

My conversations with my mother were even more unreliable, a dizzy, endless loop of repetition and confusion. The confusion was not just on her part, but on mine as well. Who is she talking about now? Where is she in time? Does she know where she is right now? And the biggest question of all, does she know who she’s talking to? The answer to that last question was an emphatic no.

There were two main topics we stuck to over a period of three days. She would complement me on how nice my apartment was and how similar it was to hers. She would describe her condo in great detail, as if I had never been there. Sometimes the condo was in Rhode Island, other times New York. The correct location is Rhode Island but she did spend time in New York when she was young. Never correcting her, I just listened, riding the roller coast that is now her quickly declining memory.

Our other topic was her best friend. First some background. My sister Maureen lives two blocks from our parents and sees them often. My mother’s best friend in high school was Arlene Betty. Fifty-eight years ago Arlene was my mother’s maid of honor but they lost touch over the years. I am not even sure if Arlene is still alive.

The memory loop got very twisted when we talked about my mother’s friend.

“My best friend Maureen takes me shopping every Saturday then we go to lunch. She’s a teacher, you know, and she has two daughters.”

“No, she has two sons, Mom.” Okay, so sometimes I did correct. My sister Maureen has two sons.

“Oh, you know Arlene Betty, too?”

Maureen my sister had switched to Arlene Betty, my mother’s maid of honor. I roll with it.

“Yes, I know her. She’s my sister. I’m the one who has two daughters.”

“I didn’t know you had two daughters,” she said, with a big smile. “Oh, I’m so happy for you. I had three daughters but they’re grown up now. My oldest daughter Sheila was very hard to raise.”

That would be me she’s talking about, and the rebellious summer of 1975 when I graduated from high school. Most of my antics took place at college, my mother never knew about them. But 50 years later, I am frozen in time, forever a wild child who was difficult to bring up. It wasn’t me she was talking about, her daughter sitting across from her, but some other me she remembered from long ago.

I didn’t want to make her nervous by correcting her on that one. I can only imagine how frightening it must be, not knowing where you are or who you’re talking to. Or to have a glimmer of the very big thing you just forgot, that this is your daughter sitting across from you.

What is it like when Alzheimer’s creeps in, distorting your memories and the very essence of who you are? How scary is that feeling? Because after all, who are we without our memories?

Early this morning, my parents left to catch their flight home. I made coffee and tea and over a quick bowl of cereal, my mother thanked me for letting them stay at my apartment, which is very much like hers, except my TV is bigger.

“It was nice to get to know you again. I forgot we know so many of the same people. You and your husband are very nice people. If you ever come to Rhode Island, you can stay with us.”

Alzheimer’s is a thief. I know that, but it doesn’t make it any easier. Over the past three days, I was in awe of my father’s patience and kindness. I worry how long he will be able to do this. He is determined to keep my mother at home but I can tell in his heart he knows that might not be possible, so he prays he will outlive her.

In the dark early morning hours, just before the sun rose, saying goodbye was difficult. What will my mother be like the next time I see her? What else will she lose? I have friends whose parents suffer from this horrible disease. I know, eventually, they lose all their words. As a writer, it is impossible to imagine that happening but it very well could.

Over the years, I’ve had some funny instances where I sang a song and got the words wrong. One that stands out in my mind is Huey Lewis and the News singing I Want a New Drug. I thought he was singing about a new truck. My husband would never let that go.

“Why would someone sing a song about wanting a new truck?” Or he would say, “It’s the title of the song, for God’s sake.”

Once In a Lifetime by the Talking Heads also has a lyric that tripped me up. I searched it on the Internet this morning, because I really like my word and couldn’t help asking myself am I right or am I wrong?

The correct lyric is “time isn’t after us” but I thought it was ‘time is an asterisk’. I know, crazy isn’t it? It scares me to think I might be getting The Alzheimer’s, as my father calls it. When he uses that expression, The Alzheimer’s, I can’t help but think of hiding from unwanted house guests knocking at the door.

“God damn it, it’s The Alzheimers, ” I would mutter, then shout, “Go away. We’re not home.”

An asterisk is often used to show the omission of a letter, as in, “the f***ing Alzheimer’s are knocking on the door.” Or it can be used to indicate information a writer leaves out of an article but is providing in a footnote at the bottom of the page, in case the reader would like to learn more.

I am going to continue to sing my lyric every time I play that song, because when it comes to Alzheimer’s time truly is an asterisk, editing the words and the memories, leaving only footnotes for the loved ones who fill in the missing information.

***Originally published on the Huffington post***

If you have a loved one suffering from Alzheimer’s please join the conversation. We’re all in this together.