One

Introduction

  Nearly ten years ago, my mother was diagnosed with Alzheimer’s. This news put my entire family on a reading mission. We read every news story, book and article we could find. In that search, we found several books that were very personal stories. Everything I read was an insight into the enormous impact of this disease. They were tales of loss. Loss of control, loss of memories, loss of all things that made up some person now suffering from Alzheimer’s. Well worth the read, but heartbreaking, and you must read them with a box of Kleenex handy. The degenerative nature of Alzheimer’s culminates in that one horrific moment when that loved one no longer recognizes their own family, and these stories chronical that journey in a very relatable, but often painful manner.

  What I find sorely lacking from this array of touching and helpful material is something I came to realize over many moments with my mother, and culminating in one very sunny day in October a little more than a year ago. The story missing from the vast array of material on Alzheimer’s is the celebration of the life lived, both before the diagnosis and afterward. The story of the remarkable person who is on the verge of being lost forever. What made them laugh, made them cry, and made them who they are. I’ve met many people since my mother’s diagnosis. They all had moments to share, moments of someone dear to them. Despite that, there seemed to be no story out there that celebrated the life of a person facing Alzheimer’s. This may be because I have yet to find such a book, but I find it heartbreaking that with all the people suffering from Alzheimer’s, there is not a library full of books celebrating and chronicling the lives of these people. Not just to honor those suffering, but to provide the families and those that surround these patients with a means to heal and remember. 

  What is most tragic to me, as a daughter, and a writer, is how little by little, I’m losing my mother and with her, all the memories she held of her life and our lives. This horrific disease that neither disfigures nor eats away at someone physically, but so painfully takes a person’s memories, experiences and relationships from them. Along the way, it takes someone dear from those who shared the life of that patient. Not suddenly, but inch by inch, day by day, over an extended time.  

  As the immortal Toni Morrison once said, If you can’t find the story you want to read, you should write it. So, here it is. It is a celebration for every patient, every caregiver, every family member, to the life well lived. It is a tribute to the often-ordinary nature of most of our lives, but in retrospect, the heroic people that walk around us each day, that touch us with their laughter, their love and their unending strength.

  This is a story for and about my mother. A woman born in 1940 in a small town in central Illinois. She has two younger sisters. Raised primarily by their mother, after the sudden and traumatic death of their father. My mother is not a celebrity. She is not renowned for any significant accomplishment. You will not find my mother gracing the cover of any magazine, nor is she documented outside of her yearbooks. She played in the band, married her high school sweetheart, raised four children, and enjoyed a loving family and a wide set of friends. My mother baked, babysat grandchildren, and built dollhouses. She was a nurse, a mother, a cashier, and a real estate agent. Yes, it is an ordinary life, you might say, but you would be wrong. To call her life ordinary would miss the truly extraordinary woman who is my mother. The little girl that trampled the garden happily with her friend, voted most popular of her senior class, while getting chased around by her mother for talking back, was full of mischief, love, strength and devotion.  

  She is wrapped up in literally every memory I have. The good, the great, the bad and the ugly, she is there with me. She has been the sounding board for every major decision of my life. Present for every art show, track meet, and award ceremony; nearby for the birth of my children, and the shoulder I cried on when I had my many miscarriages. She has been my counselor, and she is the example by which I judge myself as a mother, a wife and a person.  

  As I have talked to her friends, family and classmates, and learned all these bits and moments of her life, I have learned that she is, and was, so much more than the mom that nursed me through tonsillitis and broken hearts. She was carefree and fun-loving and had a great sense of humor. And while she was strong enough to wrestle four children through the department store to prepare for a new school year, she dreamed many dreams and played pranks, had fun and got in trouble.  

  Alzheimer’s has the power to reduce a loved one to something barely recognizable, but it cannot and will not erase the vibrant and loving life of my mother. In that, the disease has already failed. It may ultimately take my mother from those who love her, but we will overcome because we have these memories of this loving, beautiful woman and her legacy, of her life, her gifts and her spirit to carry with us for generations to come. This is the celebration of her ordinary, and maybe a little extraordinary life.

Two

The Fateful Day

Although she was diagnosed years ago, and one could say the fateful day was that day when we learned she had Alzheimer’s, the truly fateful day for me came last October. My mother’s disease started as many Alzheimer’s patients start. She couldn’t remember that she asked about something, so she asked again, and again. She got a bit lost one day returning home from a luncheon with women she knew, which was about when we discouraged her driving herself anywhere. She forgot things you told her. It was funny at first, then a bit trying, and I think the diagnosis helped us all focus and work together to provide her the best care and maintain the best quality of life. For me, the diagnosis was the moment I found my patience, and realized that the tables had turned, and it was now time for the children to help the parents. As a younger person, I always imagined this moment and wondered when it might happen. Would we, myself and my siblings, be ready? Would we be at a place in our own lives where we could manage it? At no point has it felt like an obligation, however. Helping my mother and father has seemed not like a repayment, but a tribute to what they gave me and my siblings, and who we are. I would like to say I felt totally prepared, but that wouldn’t be true. If truth be told, I doubt anyone is truly prepared to shift their focus to care for parents.

The Alzheimer’s advanced, as it does. She’d see something or hear something and try to tie events and people together that were separated by years or circumstances. Once, while travelling back and forth to Florida, having stopped for lunch, she asked when a real estate colleague was joining us, and when I said he wasn’t, she insisted for nearly fifteen minutes we had to wait for him. I’ve never understood what about that day, the restaurant or the circumstances brought that stop for lunch together with a former colleague. She became very protective of her things and got almost hostile if she thought something was missing. If it was missing, it likely was because she had decided to put it away, and it took us weeks to locate it, underneath something else, in a drawer where it had never been kept before. Then she got a little belligerent and swore. Surprisingly, that seemed to settle down when we began labelling the cabinets and closets with the contents found inside. However, for about a year I threatened to embroider two pillows for her. One that said In a minute and one that said Bullshit, as those had become her two favorite responses to any question or comment. Do you need to go to the bathroom I would ask, In a minute she would reply, and her response to anything that she didn’t like in that moment was Bullshit.

Then she began pounding her hands on the arms of chairs and tables all of a sudden. When you asked her what was the matter, she would occasionally say she didn’t like this. Clearly, she had some awareness that she was losing her memories, I thought, but when asked, she could not define or explain what this meant to her. It got harder and harder for her to manage the transition between my parent’s summer home in Chicago and their winter home in Florida. Eventually, Dad realized they had to have only one home. Dad gave up a lot. He was helping to coach the area football team. But Mom couldn’t be left alone. My youngest sister, Jan and I would take turns sitting with her during football games, taking her to dinner and shopping. Even that became too hard and he decided to give it up. Our father would travel around to watch grandchildren at their track meets, football games, golf tournaments and wrestling matches. He had to stop doing that too. Probably too late, his children realized the depth of his devotion to his wife. It is clear to me every day now. The depth of their devotion to one another has been evident throughout my life on some level, it just seemed more one-sided for many years with my father carrying the burden of supporting our family, while my mother carried almost everything else. Now, their roles have reversed. He carries the burden of absolutely everything.

Any one of those points in the progression of her disease could be considered fateful days. Perhaps they all were. It was difficult, in those moments when I would look into my mother’s eyes and know that the person I knew was momentarily gone. The first few times it happened, I was surprised and overcome with sadness, but I kept convincing myself that we could manage this disease and if we could just keep her in stage one longer, it would be ok. It was a game I would play with myself. If she had a particularly good day, I would presume they would keep happening, even when the good days, in fact, didn’t go on, and were not consistent. I was fooling myself, I guess. This little game is what led to my fateful day.

My parents had permanently lived in Florida for nearly a year by last year. During that year, Rich, my husband, and I made several trips to visit them. These trips served several purposes for me. One, they helped assuage my guilt over not being close enough to just run over at any point to help out. My being twenty hours away was proving more difficult than I had first imagined and at least once every day I felt guilty about not being there to help in her care. Two, it allowed me to be there for my father. He is her primary caregiver and unless you’ve been in that position, or witnessed this, you have no idea how hard that can be. Any time he gets to go unwind in his office, nap in his chair, or go out to run errands and not have to worry about keeping a watchful eye on her, is a relief, I’m sure. But also, it is necessary for his sanity to get away from that constant responsibility for her safety. Finally, and I’m not ashamed to admit this, going to my parent’s house is a salve for my soul. They don’t have to do or say anything, just being where they live is a fortifying comfort. Truthfully, if I’m honest with myself, that last reason is usually the first in my mind when planning these trips because these visits tend to coincide with moments in my life when I need just that fortification. It’s funny, but every time I went home, since starting college, I have felt that surge of strength pour into my soul when I came through their door. It always reminds me of a time my freshman year of college when I was suffering from every cold that passed near me and just wanted to go home for the weekend. I wanted my mother to make me chicken soup and put another blanket on my while I laid on the couch. I finally found a ride and called home to ask to be picked up at Oakbrook Mall, about twenty-five minutes from our home. Of course, my mother said she would, but she added that everyone had all kinds of plans for the weekend and she doubted she would be able to take care of me. I smiled when she said it, and replied, it was fine, I just needed to be home. As I recall she didn’t really respond to that comment, and may not have understood what I meant. I think of that weekend every time I arrive at their house.

But back to that day. Rich, and I came for a week-long visit and midway through the visit, Mom started having all kinds of issues. She was incoherent, and couldn’t pick her feet up when she walked. She seemed very disoriented, like she did when she didn’t sleep enough. When she began to stumble and not be able to stand up, we decided to take her to the emergency room. Here’s the thing about hospitals, my father hates them. I don’t really know where it originally came from, but at this stage in their lives, I know he fears that if one of them goes into the hospital, they might not come out. Consequently, whenever we have to go there, the anxiety level escalates. Oh, and we were in the middle of a pandemic. So, there I was, with my sister, sitting on a bench outside of the ER entrance, waiting for my father to text us what was going on inside. The panic, my gosh, the panic I felt as I sat on that bench was more than I can describe. Unable to sit still, I walked across the driveway to the river and paced around the ER doorway.