My mother has Alzheimer’s disease. The first sign that things were not as they should be came many years ago, maybe a decade or more, when she began misplacing her car keys on a regular basis. At first we thought it was funny and teased her about it relentlessly because it was so out of character for someone who ran our family so efficiently. She was always a take-charge woman who raised six children largely on her own. It's not that Dad wasn’t around--he was--but he owned his own business and worked long hours to support the family and for much of my childhood was at “the station” seven days a week and often late into the evening if somebody needed a tow or a car auction was going on. His absence left most of the day to day drudgery of raising the family to Mom.
She was always busy doing the kinds of chores that I couldn’t begin to do in my own life. She grew vegetables on a grand scale in a garden that consumed much of the land beside the house, then she harvested and preserved her bounty for us to eat during the winter. She canned several different kinds of pickles, peaches, chowchow (a relish much beloved in the South), tomatoes, pickled beets, vegetable soup, green beans and any number of other things, plus she cooked vast batches of the world’s best fried corn and froze it in dinner-sized portions that filled a large chest freezer. She made jellies and jams and apple butter, and she and Dad grew peanuts which she dried in the hull for snacks or shelled them to make peanut brittle.
She sewed clothes for us girls and herself, and made so many quilts that they eventually filled an entire closet before she began sending them home with us a few years ago. She designed and made a unique child-sized quilt for each of her first several grandchildren, and on top of everything else did the bookkeeping for the business and ran it when Dad had to be away. I can’t remember a time in my childhood when Mom sat around reading a magazine, or even her watching television in the evenings in the living room with Dad without her hands being busy sewing or crocheting or writing a letter to some far away relative in her handwriting with its big loops and perfect spacing.
I distinctly recall the first time I realized that misplacing her car keys was more than just a funny new habit she’d developed. She called my middle brother who lives in the house beside her late one night and insisted he come right away to help her find her keys. She had spent the previous several hours searching her house from top to bottom and by the time she phoned Roger for help she was in a state of panic. He eventually found her keys in the freezer.
The next symptom of the disease that had begun to take her away from us was when she began to retell the same stories over and again. At first she’d repeat something she had told me in a phone call the week before, but a decade ago she’d usually catch herself mid-story and ask if she already told me whatever it was she was telling me. Nowadays she is often caught in an endless loop as she comes to the end of a story and immediately starts back at the beginning, telling it over and again until we manage to divert her attention onto something else.
Over the years many other pieces of my mother’s sharp mind have slipped into a dark cave from which they will never emerge. The woman who used to manage her finances with precision and efficiency asked her youngest son to take over the task of her checkbook after she received a cancellation notice on her car insurance because it had not been paid. The fearless traveler who was always the driver of choice when she and her lady friends attended family reunions in distant places one day asked us to disable her car so she couldn’t go for a drive some day and perhaps forget how to find her way home.
She returned to me her stash of her favorite peach scented candles I had always kept her supplied with because she was afraid she would forget to blow them out when she went to bed and might possibly burn her house down. And the woman who had always taken great pride in her kitchen skills as she prepared vast home-cooked feasts for the endless crowds who were always at our house—whether it was our school friends hanging out after a game or our many relatives—no longer cooks anything other than her breakfast of toast and coffee because she forgets to turn off the burners. Her meals are now delivered to her by her children who must beg and cajole her to please eat just a little because she no longer feels hunger or thirst.
There have been many agonizing moments as we’ve watched Mom’s mind slip away but I think my oldest brother might have witnessed one of the most heartbreaking. Early in her illness she still had awareness of what her mind was like before the disease and she knew she no longer thought or spoke in the same way she had before. One night the reality of what she had already lost and the realization of the terrible fate that awaited her came crashing in on her with brutal clarity. She wept with all of her being, her tiny shoulders shaking with gut-wrenching sobs as she grieved for everything she had already lost and was still to lose, and she faced the unfaceable truth that her life of independence and dignity was over forever. Her grief that night was so profound and so deep that it could only be subdued by sedatives administered at a hospital emergency room.
Today the person who looks like Mom is not really our Mom. She’s a 100 pound bundle of contradictions who, in the blink of an eye, can go from sweet child to hardened adult, from cheerful to bitterly angry, calm to frustrated, gracious to unbearably rude. Many of the stories she tells these days are no longer accurate because her mind has cobbled together the details of events that happened decades apart to form a single memory that bears little resemblance to real events.
New memories are rarely possible since she forgets what happened as soon as it has happened. In telephone calls she complains that my sister never comes to see her, although many times I’ve just hung up from talking to my sister as she drove home after visiting Mom. She will insist my siblings remove some item or another from her house and take it home with them, then later will be absolutely certain the thing was stolen or removed without her permission. And when the item is returned to its original place in her house in an attempt to placate her, she complains it was dumped off because my sibling didn’t want it cluttering up their home (at one point my youngest brother had transported her white sofa back and forth so many times that we teased him about putting casters on it). Some of the greatest challenges for us come in trying to find humor in dark situations and learning to bend reality to fit the version of reality that exists inside Mom’s mind at any given moment. And all of us struggle mightily in digging ever deeper to find the patience required to cope with the constant twists and turns.
It is indescribably frustrating to listen to Mom express hurt or unhappiness over someone's unkindness to her when we know the event that is so upsetting never really happened. But we no longer have the ability to correct for any length of time her flawed and corrupted memories, so all we can do is listen and sympathize as best we can and try to get her mind on something else.
For me, when I think about Mom and Alzheimer’s disease the greatest emotion is not sadness but anger. I am angry because all the things I never got around to telling her can now never be told or truly comprehended, and questions I never got around to asking her will never be answered. What was her recipe for that fabulous vegetable soup I’ve never been able to duplicate? How did Dad propose to her? Was she scared when Dad went away to fight the war and she was back home with a house full of young children? I’ll never know the answers to those or an endless list of other questions, yet she is right there in front of me--she still looks like Mom and sounds like Mom but she isn't really Mom.
I get especially angry to think of the 20 year old beauty with the deep blue eyes who married the young milk pasteurizer from Marbledale and grew up to be a strong, fiercely independent woman who could shoot a gun with legendary accuracy, change her own flat tire, and bake a killer blackberry cobbler while balancing the books and raising six kids and is now being methodically taken from us one brain cell at a time by this vicious bastard of a disease. That makes me really, really angry.
The only comfort is that Mom no longer truly remembers what she was like before the disease took control of her mind. She can no longer see herself in any context beyond what exists at this very moment in her tiny universe comprised of her own house and garden. She would be utterly mortified and inconsolable if she could see anything more than that.
I’m not sure why I wanted to post this story tonight. I know it is a far cry from the normal silly stuff I talk about here but for some reason tonight seemed to be the night to talk about Mom.
Sorry for the downer. I’ll be back to talking about my usual mundane stuff tomorrow, promise.
