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.”

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.