Pieces at a Time: Alzheimer's Ongoing Cycle of Loss

I don't remember the day I realized my mother had Alzheimer's Disease, but I do know it was well in advance of us getting the formal diagnosis after more than a year of contentious battles with our mother over getting medical treatment. Still, that day, when my older sister called me and told me they had definitively diagnosed mom as being mid-stage Alzheimer's, I realized that some of those pieces of my life with my mother, of her own life, were already gone forever, like the breadcrumbs left behind by Hansel and Gretel that would never have the ability to safely mark their way home.

I am one of eight daughters, seven surviving, in my family. My father died relatively young, when most of us were young adults and my little sister was still in grade school. My mother had been a widow for many years, and order, routine, regimentation had been hallmarks of her day to day existence. You don't raise that many children without order and routine. But, as I contemplated moving back to my hometown with my children more than ten years ago, I noticed in visiting my mother that she was relying more and more on habits and routines not in sync with her singular lifestyle. When we were children grocery shopping involved large quantities, but my mother was never one to overly stock up. For one thing, our finances weren't such that we could lay in two months of supplies and still pay the mortgage and school tuitions. For another, it was just not her way. We never ran out of things, but we rarely had to throw away something because we'd overstocked. In the days before Costco and WalMart, my mother used to buy two or three of the four roll packages of toilet paper on weekly grocery store trips, and two rolls of paper towels, sometimes three. There were always some canned goods in the cupboards for the quick meal here or there, or to stretch the budget at the end of the month, but never cans and cans of the same thing. Well, in the fall of 1997 I visited my mother for a weekend with my three children and was surprised to find one of the hall closets, which used to house the vacuum cleaner now filled to capacity with no less than forty rolls of toilet paper. She also had more than a dozen rolls of paper towels and probably 1,200 napkins. The kitchen cupboards were filled to capacity with canned foods, alphabetized and arranged with complementary ingredients next to each other and stand alone foods by themselves.

At first I marveled at my mother's orderliness, and I wondered if maybe she'd never been able to ratchet down her shopping to accommodate now being a house of only one or two. But, the more time I spent with her, and especially after my children and I briefly moved in with her when we did move back to town before finding a permanent house, I saw how much she was hiding. All of my life my mother had a morning ritual, shower, put on underthings and slip, set hair, dry hair under the bonnet, remove curlers, comb out and shellac with hairspary. She then applied only lipstick after putting on her dress for work, or later, her slacks and blouses. At the apex of her efficiency, in her early to mid 40s, when she had one child to get off to daycare, and six to grammar and high school, my mother sped through the morning ablutions in 30 minutes. Now it was taking her two hours. The same ritual. She had also lost all of her mid-life acquired extra weight in her early 60s, though she hadn't really changed her style of eating. And watching her make her avocado, tomato and cheese sandwich with a single piece of lettuce revealed she had to do things in a certain way. Making that simple sandwich took her thirty minutes. I remember thinking she burned more calories getting everything out, measured and put away than she took in from eating it.

And she had trouble holding a thought and concentrating while driving. She was never a focused driver in my recollection. Her mind was often elsewhere and she had a number of fender benders and near misses in her past, but now the erratic nature of her driving was taking on epic proportions. She sometimes brought my children home from school and daycare, and she never varied from the straight line route, no matter traffic or other errands she might have to do. Often she stopped at greenlights and had to be prodded into movement by someone's horn behind her, and equally as often she sailed through a yellow light already gone red and shook her head or her first at anyone who dared to honk then. It often took her all day and into the night to pay her monthly bills. And if she decided she wanted to do something on a whim, like buy Scrip from my children's school, I tried to always go get cash for her check first, rather than depositing it with the Scrip order, because often she had not really balanced her checkbook and if she'd overspent it would bounce. She generally never spent more money than she took in, but she might forget to write down a random ATM deposit, or to check her ledger before writing a large check.

I knew what all of this meant, as did my sisters, but facing it, and having to have mom face it was something all of us dreaded. The most difficult years for me were the ones right after she was diagnosed. My mother's mind was the most present then, her fears at the forefront. She'd had a lot of loss in her life and she feared death and loneliness. She always had. Just as we were all watching little pieces of her get erased, she was witnessing this too in the early stages. In some ways she was like the knight in Monty Python and the Holy Grail who is fighting and has one limb after the other lopped off and he hops about on one leg, with no arms, egging the other knight on, calling him chicken, and looking at himself he dismisses the parts that are missing as "it's just a flesh wound". Mom had to be a bit like that persistent knight, fighting to go on with this major flesh wound, knowing she couldn't beat the other knight, that doom was imminent, but unwilling to lay down and die. And, of course, we all watched her hop about, and sometimes we pretended it was just a flesh wound too.

The losses were hardest on those who saw mom the most infrequently, those who lived remotely or whose lives were so busy they couldn't get by twice a week or more. I remember the time period in which my mother's pointless, panicked phone calls to me at work in the middle of the day, ranting over some slight, or giving me unsolicited advice on some matter that had just popped into her head, gave way to the less frequent calls, the ones where after I answered she suddenly recognized my voice and she asked me where she kept the spoons, or what time Kathy or Maureen was coming by today. And then the calls stopped altogether. Suddenly I had complete radio silence. That is the experience of it. In one moment your loved one clings to remote ability to communicate with you, and in the next something as basic as dialing a telephone, or being able to direct a caregiver to do so for you, vanishes. I was like that ship off the coast somewhere that could no longer home in on her and come to her rescue, because suddenly there was complete radio silence. And I knew somewhere inside her there were moments when she felt the hopelesness, the permanence of the stranded troop whose radio has finally gone completely out. All hope is not lost, exactly, but the expectations of rescue now give way to acknowledgement of learning to survive right where you are and under those conditions.

By this phase the reactions of my siblings varied so widely. I think it was hardest in some ways on my two oldest sisters who, after all, had known my mother the longest, and who had more singular childhood memories of her than the rest of us did. When you are the sixth of eight children, a lot of your early childhood memories are of faceless arms reaching out through the crowd to pick you up in the midst of a birthday party or a holiday. I did remember her always singing to us in the car, sweet songs of her childhood and of our growing up years. "I love those dear hearts and gentle people, who live in my home town. Because those dear hearts and gentle people, will never ever let you down." I remember sleeping with her sweater when I was a small child and she was working a swing shift for a while, because it smelled like her and I knew if she was wrapped around me like that she was going to come home safe. As long as I could still breathe her in and it was still her distinct, comforting scent. I remember her dancing into my father's arms the night President Johnson withdrew from consideration for the 1968 Democratic nomination, and she was saying, "Now it's Kennedy, Kennedy, Kennedy, all the way!" My mother would have been 41 in 1968, already the mother of seven children with that yet unthought of midlife child still down the horizon. That she danced and skipped that night was completely out of the ordinary, and it is one of my most pleasant early childhood memories.

My mother was a person of strong opinions who was generally unafraid of bestowing them upon you. I remember the day, more than four years ago, when I found myself crying because I'd picked up the phone to call and ask her something, and I realized before I finished dialing that she wouldn't be able to answer me. How many times had I wished she hadn't said what she said, or felt compelled to share her full opinion with me? and yet there I was, mourning her wisdom, her anger, her criticism, whatever. I understood that was another piece gone missing.

And I remember the times when my family would all be gathered around her, at a holiday or a birthday, and some of us would pretend she still had these remarkably clear days. Yes, sometimes she uttered a seemingly cogent statement or a sage commentary. She knew all of us, knew she loved us, but clearly couldn't place us all, or herself for that matter. Sometimes one of our names would randomly shoot from her lips, more often she didn't identify us at all. To me that wasn't important, that she remember who I was, it became more important that she know I was here, now.

The mirror at some point became her enemy. First it showed her an old woman in her clothes, something someone who has regressed into childhood couldn't fathom. And, more recently, when my younger sister takes her into the bathroom to attempt to get her to go, my mother becomes sometimes embarrassed and unsettled by the two other people in the room with them when clearly this is a private function. It's hard to say whether it is a depth perception issue or an animation issue, or just that all life for her is now images coming at her and colliding with her past, the place she lives. She interacts with people on old television shows. She cautioned young Beaver Cleaver to be careful with the handmower one day while watching an episode. She talks to the space heater my sister puts near her. She converses with her many stuffed animals and the little creatures my children bring to her. Sometimes she sings nonsense songs or has lengthy, indecipherable one way conversations with someone none of us can see.

My mother doesn't have much speech left. Sometimes she is extremely interior when I am with her, sometimes because she is having seizures. Often she is wet and soiled. My younger sister puts up with sleepless nights, endless hours of trying to dress, undress, clean, groom, and keep my mother at least thinking about toileting. We cut her food and sometimes we feed it to her. We remind her it is there when she gets distracted. If she cries I comfort her and tell her it's okay. I always kiss her many times on her forehead or cheek and hug her warmly when I come into the room and when I leave. I hold her hand some of the time, as do my children. My daughters remember her, vaguely, as she used to be. My son is too young to really remember when grandmother wasn't a child in an old woman's skin. Still, they love her and their love has meaning to her. In the midst of my own sense of loss I find that unconditional two way love very affirming.

Some of my sisters visit very infrequently. For me, that would be harder. I know that even as I am with her now, growing to love this person who has replaced my mother, that I am also daily mourning the mother I lost at the same time. I delight in her innocence, in her wonder. I cherish all that my younger sister gives her every day, all the nurturing and caring that my mother lacked in her own childhood when my grandmother died. I want to be a part of this process even as the pieces still fall away day after day. It is the reverse of having a baby, for whom you toil and care knowing they will eventually grow. But this process has purpose too. We are on radio silence. We share a different communication now awaiting the total quiet, the total dependence, the slip into darkness long before death. But, unlike a parent who sometimes yearns for the days down the road even as she cherishes the blessedness of these brief moments in time with a challenging baby, I don't look ahead. And, I don't look back too much, because of course then I'd see the trail behind me grown cold, the bread crumbs long gone. You don't count all of the pieces that had broken off, you don't think about the darkness of the woods ahead. You simply take the hand of the child you are leading, the parent who led you once, and you give them comfort, solace, love. You can't erase your own memory, your recognition of all that has been lost, your understanding of how different things are now. You do indeed continue to feel the loss, every day. But it isn't what is important. When the tree that is my mother finally falls in the forest, I will be there to hear it and it will indeed make a sound, a great, glorious sound with the weight of the fullness of who she was and of her complete lifetime.