Breakfast Memories Page 5

  “Safe travels, Dad. I will take care of her,” I said.

  The following day, the Irish flag was flown at half-mast in the village of Fairport.

  CHAPTER 7

  Different and Better

  It took me quite some time and many sleepless nights after Dad’s passing before the complexities of who he was, and the intricacies of their private love language, would come together for me like the pieces of a complex jigsaw puzzle.

  Once the seven of us were out of the house, their onetime busy home became naturally quiet. For all the years we were growing up, it was Mom who was up at the crack of dawn making sure all was set for breakfast, lunch, and dinner. But once we were grown and had left home, with no kids to tend to, she slept in a little longer, and it was Dad who was the first one up.

  The banner that hung in the kitchen as a reminder to all seven children. Stand out. It’s not enough to be different. You have to be better.

  Every morning, without skipping a day, he’d go downstairs, set her Irish claddagh breakfast placemat with a plate, a fork, and a spoon and make a pot of coffee. When she’d come down for breakfast, his magical expression of love would begin.

  With nurturing kindness, he’d serve her a cup of coffee with a perfectly toasted poppyseed bagel, spread with just enough margarine to cover the outer circle, and most importantly, pile it with heaps of marmalade to sweeten any dryness. He would saunter over to the kitchen hutch they’d kept since the Cincinnati move and bring her one of his special creations: an orange prescription vial filled with M&M’s and relabeled “Daily happy pills for Bernadette.” He’d place the vial to the left of the coffee cup so that she could enjoy her dose of chocolate happiness with her last sip of coffee.

  To me, this morning ritual sounded like the epitome of kindness and love—a man taking such sweet steps to make his wife happy, by making her a daily breakfast of her favorite things.

  But for my Dad, it was not enough. He did more.

  We grew up with lots of pictures and hangings throughout our house. Many hangings were replicas of antiques and collectibles, many of them were spiritual, and many were nautical. But one of the most important hangings was a banner that Dad hung in our kitchen, across from the twelve-foot-long kitchen table, above all the seven portraits of his children. The poster was of eight toy soldiers, standing side by side, all the same color, all the same salute. The ninth soldier is separated from the first eight and is standing out in a different color, with a different salute. We all loved that poster with the slogan “Stand out. It’s not enough to be different. You have to be better.” Growing up in that house, it was the foundation for motivational success: a constant reminder to never stop looking for different and better ways to solve problems and to never quit or give in.

  The poster was hung prominently in the kitchen for us all to see and remember, but as Mom’s dementia progressed, I think it triggered Dad’s creativity and reminded him that his wife needed action that was unique, different, and better than what medical science was offering. He needed to act exactly as he had all of his life—different and better.

  So, to show his love and devotion for his beautiful wife, Dad provided more than the simple preparation of her morning breakfast. He crafted a morning routine that was different and better. Beyond serving her “Daily happy pills,” Dad wrote her poetry—daily proclamations of his love, written on a generic napkin, in either red or black marker, seven days a week.

  He was a man in love.

  CHAPTER 8

  The Napkins

  One of the gifts that I received before Dad died was that he was able to tell me about his fears and his hope that Mom remembered him after he died. During many of my hospital visits to him, he would reflect on the story of his daily napkin writing and breakfast preparation for her. He told me of his napkins and the other poems in the house that were his message to her and to all seven of us, the message that he loved her, always and in all ways, both for who she was and for the magic she brought into his life. He never wanted any of us to forget that, especially Mom. His poems were from the heart, back to the days of ice cream and Central Park and their dreams of the two of them sailing the world. He was a man of true brilliance with no hesitation to write, even with his poor spelling, about the love he felt for his beloved wife.

  In our conversations he told me that she would read the napkins, touch them, and then gently kiss him, delighted that she was still the center of his world. So that she would not just read but feel his love in the napkins, she would tenderly press the napkin with her right-hand fingers. He would then place each napkin to her right side and his left, so that it sat in front of both of them. The careful positioning assured that the marmalade and her coffee did not spill onto his written promises and sonnets of never ending love.

  After breakfast, before the day continued, one of them would pick up the napkin sonnet and place it in a baggie in the drawer of the kitchen hutch.

  That’s where they stayed until the day I found them.

  CHAPTER 9

  Her without Him

  After Dad died, my sweet mom stayed at her assisted living apartment. She never went back to our family home. We sold her house and all the things inside it.

  Her downhill slide continued.

  Within six months, I moved Mom from the original assisted living apartment into long-term care. Dementia had progressed, and her mind was continuing to weaken, but physically she was still walking and eating. In the aftermath of Dad’s death, it was like watching a repeat of her response when Aunt Margaret had died. What was this powerful connection between the sadness in her soul and the progression of dementia?

  Watching Mom in long-term care broke my heart. If you are a daughter or son who has a parent with dementia, most likely you know exactly what I mean.

  I felt as if no facility (a word I hate) was good enough to care for my mom. Although she had the finest and most devoted nurses, doctors, and caregivers, I felt a neverending hopelessness that I was not doing my best, when my best was all I could do. It’s awful to feel so helpless.

  I had taken on the responsibility of providing care for the woman who gave me life and had promised my dad that in his absence, I could and would provide a happy life for her, and I felt like I was failing. I couldn’t stand to find her in the silent setting of long-term care, where she had to smell antiseptics all day and night instead of the peonies and roses she loved. I couldn’t stand that Mom was surrounded by patients with levels of acuity much greater than hers. Long-term care was not a fit for her. Mom had life! She had her health. She could walk and sing and smile and give the warmest and most gentle hugs. She just didn’t have her memory.

  “Your Mom is watching TV.”

  Almost every time during the three months Mom was in long-term care, when I would go to visit her, the nursing staff would greet me with the words, “Your mom is watching TV.” I’d find her in the “great room” in front of the television. But she was not exactly watching TV. In fact, I would find her with her eyes closed, napping, with the TV on channel 66, Turner Classic Movies, mostly from the 1950s and 1960s, all in black and white.

  “Hi, Mom! What are you watching?” I’d ask, walking over to where she was slouched over in the chair and waking her up. She never answered the question. I don’t think she ever knew and couldn’t have cared less. Mom never liked TV. She liked music and activities and caring for people and conversations and singing and baking.

  “Well, hello! How are you today?” she would reply, sweetly giggling at the attention she was getting from—who? Who was I?

  She didn’t know, and frankly I barely even knew my role anymore. I hated that she didn’t know I was her daughter, and I hated that I felt so helpless. Each time I would go to pick her up, I would ask her the same question.

  “Would you like to go with me and make a cake?”

  “Oh, yes, of course. Can we eat the cake?” was always her reply, perking up in her seat and smiling with the same beautiful
smile of yesteryear. How could dementia be so mean to a person who was so kind?

  Poor Dad, I thought. He’d seen this longer than we had. My heart ached for what he must have felt watching the progression of her disease. My heart and stomach tugged with my own guilt that I’d been so angry at him for being frustrated with her. I wished for something that could not be; I wished I could tell him again how sorry I was for not understanding his pain.

  A stab of angst went through me. I was letting my father down.

  “Let’s go make cake and eat ice cream.”

  After I signed her out, we’d walk to the car, open up the door, and ever so gently, I’d swing her legs in and buckle her up. I’d turn on the CD of her church music and look up to heaven to pray for—what? Less confusion? Less guilt that I wasn’t doing enough because I wasn’t doing everything humanly possible to care for her like Dad did? I guess I was looking up for answers.

  Dad, I don’t know what to do. I’m scared just like you were. There is no peace in my heart. I am afraid because I am out of answers. I don’t know what else to do.

  Many days, I would take Mom home. I’d strap her into the kitchen counter chair using Dad’s old waist harness so that she wouldn’t fall, and we would make her famous Duncan Hines brownies. I’d hand her a spoon to stir the brownies, and she would sit and use the spoon to mix the air, never getting the spoon into the batter bowl.

  “Way to go, Mom! Marshal will love these,” I’d say as she continued to joyously wave the spoon through the air, looking more like the conductor of the Philharmonic Orchestra than a person mixing brownie batter.

  It didn’t matter that she wasn’t really mixing the brownies. I didn’t care. I was playing the role of Dad, trying to ignite a memory in her with the smell of the chocolate dessert, hoping that she would be reminded of years past, when she would bake to her heart’s content.

  “It smells like brownies. Was Grandma here?” Marsh asked one day as he came out the front door and met me in the driveway. I had just brought Mom back to long-term care and packed the brownies with her for the nurses.

  With tears streaming down my face, I told him yes, that Grandma had been there, knowing how happy Mom would be to know that he connected her to the smell of warm brownies.

  There were times when I knew I had to lighten up a little, so I’d grab on to one of my mom’s sayings from our childhood days. When we were little, if she was in a pinch or listening with compassion to a person experiencing hardship, she’d say, “With the help of God, this too shall pass.” During my own frustrating moments of despair I would repeat her line and add, “…and now would be good.”

  I could not find peace. I had watched my father struggle against dying because he feared that without him at her side she would spend her life wasting away in a nursing home.

  He was right.

  I couldn’t stand it, and after three months in the long-term care facility, I again moved my mom. This time the move was four miles away from my home to a senior living center that specialized in dementia care. The facility was a one-building structure similar to a home setting, with individual apartments and a circular flow. Residents could walk inside the carpeted loop that went around and around and around and walk in circles until they were exhausted. The facility focused on social interaction, which is what motivated me to move Mom there. I believed in my heart that she would benefit from being with women similar to herself—loving women, who, aside from the cognition and memory loss, were otherwise physically healthy. I wanted her to be with me, but she couldn’t have this type of social interaction if she moved in with us.

  This move was number four for Mom within two years, and once again, Mike, Manny, Marsh, my friend Richard, and I loaded up a moving van and moved all of her original furniture, including the bed from their original apartment, their Cincinnati hutch, her love seat from their engagement, Dad’s huge ships, the portraits of her seven children, piles of photos of her with her grandchildren, and her wedding album to yet another new care center. We brought a continuous-play CD player with her church hymns and her Irish ballads and made sure that the aides in the kitchen served her marmalade each morning. Overall, in her new place we recreated her home that we shared growing up in order to help her retrieve memories of who she had been.

  For me, that was the hardest part of dementia. Mom’s caregivers never knew the woman inside the body that they cared for. They didn’t know the CEO, the community outreach liaison, the church representative, the mom of seven children, nor the person of perpetual peace. They were introduced to the new woman whose behavior and mannerisms were as adorable as a little four-year-old girl’s. They were naturally smitten by her, but it broke my heart that I couldn’t help her be respected as the remarkable woman I knew her to be.

  My brothers and sisters visited Mom and took her on day trips. I suppose we all felt it was easier on us to not sit with her in her “dementia home,” but instead to be with her somewhere else, just one on one, hoping in private for a glimpse of the past her.

  I’d take Mom anywhere I could—anything to get her out of the dementia home, anything to keep her as my mom, and anything to keep my promise to my dad to protect her. She was darling as we walked the grocery aisles, me with my arms wrapped around her letting her push the cart, allowing the cart to act as her walker. On Sundays, I’d pick her up for church, and so she wouldn’t have to walk up to the altar, the priest would come to her in the front pew and present her with the Host. When my sister, Mary Margaret, would come to see Mom, they’d sing rounds and rounds of Oklahoma the lyrics of which, for some reason unbeknownst to us, our mom remembered. After Oklahoma the two of them would break into her church songs together, repeating the same verse of “Make Me A Channel of Your Peace,” again and again until well into the evening. Everyone was so sweet to her, seemingly knowing that kindness was the best medicine for her memory.

  Every one of my girlfriends, many of whom had already lost their own mothers, opened their hearts and souls to help by visiting and always including her in invitations for dinners and holidays. I’ll never forget the day I relayed a conversation I’d had with Mom after yet another frustrating and exhausting day to my compassionate friend, Ann.

  Mom and I had taken a road trip to Poughkeepsie, New York, about four hours from our home. We were driving back from seeing her brother-in-law, Thomas, her sister Catherine’s husband, and a terrific group of my cousins, all of whom knew Mom to be one of the world’s greatest aunts. As usual, Mom was happy and sweet, although she didn’t remember who any of the relatives were. Yet something in the visit with them must have triggered a memory from her past, because on the drive back, she awakened from her cat-nap and blindsided me with a question.

  “Do I know your mother?”

  I couldn’t breathe. My eyes welled to the point of tears, blinding my vision. There was so much pain in that question, and to the answer to that question. What was happening? I knew she didn’t know me, but it had never hit so hard before. I shouldn’t be driving, I thought. I need air. I need my husband. I need my sons. I need my sister. I need someone to understand—I need my father.

  I took a moment to answer, as she stared at me with her beautiful, innocent smile.

  “Yes,” I said, finally. “You do know my mother, and she is beautiful, and I love her.” I looked out the window, took in a big breath, and turned my head back to her. “You are my mom,” I said to her.

  She didn’t reply.

  Rolling down the window did not offer me enough air to pull me out of the reeling pain of her question. Thank God for New York State Thruway stops. I pulled over at the first one and bought a large ice cream with two spoons. Mom and I sat without talking, as I spooned the ice cream past her tender, thin lips; all the while, tears poured down my face.

  Weeks later we sat on her love seat in the dementia facility, and I told her what her life was like: that she was a beautiful woman named Bernadette. She had seven incredible children who adored her and a hands
ome husband named Peter. She sat quietly for a bit, her legs crossed and knees swinging side to side. She giggled.

  “You remind me of one of my daughters,” she told me, “but I don’t know which one.”

  I thought, and now would be good.

  But not all of her questions provoked such pain and sadness. In fact, there were moments when Mom’s dementia brought me to tears with laughter.

  One day we sat together in silence staring at the many photo pages of her seven children and her husband. With each picture, I’d review the names of her children, what they were doing in their lives, and how much each of them loved her. It had to be a full five minutes after the review of each of her children when my sweet mom, true to the soles of her first-generation Irish Catholic toes, asked only one question.

  “Did any of my children become a priest or a nun?”

  Oh, my God. Finally a moment of grace, levity, and assurance. That simple, single question proved that she, the Irish Catholic mom of my childhood, was still here in my presence, as tender and committed to her faith as ever.

  “Hardly, Mom,” I answered. And left it at that.

  Only God knows where this question came from. Maybe dementia wasn’t such an enemy, because clearly she did not remember all the torture the seven of us put her through. For her to think that one of her brood was called and made it through to serve the Church? Wow! Clearly, she had lost her mind.

  CHAPTER 10

  Dementia Loses Its Fight to the Power of Love

  One way that dementia kills our loved ones is by stealing their memory of how to eat and how to swallow, which eventually leads to organs, shutting down.

  And that, in fact, was how Mom died.