“When my father was first diagnosed with Alzheimer’s, our initial impulse was to protect his dignity and help him navigate a world that was becoming increasingly difficult for him to understand,” says Laredo publisher María Eugenia (Meg) Guerra. “With no Alzheimer’s support group in Laredo, my sister Melissa and I clung to each other as we learned everything we could about the disease from other families, from my father’s physician, from the STAR Chapter in San Antonio, and on the Internet. As we talked to other caregivers, we found experiences that paralleled our own and some that did not. There was information that we could all be sharing and so we decided to write the ‘Alzheimer’s Almanac.'” The columns, alternately written by Meg and Melissa Guerra, appear in LareDOS, the newspaper that Meg publishes on the border (See, “All the News that Fits Laredo,” February 18, 2000). This article is adapted from several columns. —Editors
Mother’s Day. In my mother’s kitchen I am engulfed by tenderness for both my parents. My youngest sister and I are busy at what we try to do most Sunday mornings. While I make breakfast, she fills a plastic box compartmentalized by days of the week with a week’s worth of medications, one for my mother and one for my father. My sister is a good bet for a chore that must be thorough and absolutely correct. I am a better cook.
It’s the one morning a week we don’t discuss business, hers or mine. It’s the morning we might run to the grocery or the hardware store to get something our mother has said she needs. It’s the morning we drive around with our hearts in our throats for having witnessed yet another slide in the cruel ravage of my father’s mind by Alzheimer’s, a disease that has changed him and in so doing has changed us.
While I cut cantaloupe, strawberries, and bananas and my sister puts the right meds in the right slots, my father has come into the kitchen to be part of the preparations. He flattens and folds the plastic bags from the grocery store with an enormous sense of purpose. Even though I am using the sink, he cleans every bit of it, bringing the stainless steel to a high shine. He is oblivious that I am using it still. I wash the dishes and utensils I have used and ask if he would like to dry them. He says, “Sure,” and then goes back to cleaning the sink.
I lean into him, my shoulder pressing into his arm and I tell him I love him. He says, “Of course!” in a nearly merry way that makes me laugh while I weep. I ask if he will set the table, and again he says, “Sure.”
He will not remember how to set the table. Some of us have two knives and a large spoon, several napkins, no forks, and no glasses. Mine is the setting with all the napkins, and for a second I remember what he used to say when I was a child—that I was very generous because I shared my meals with my clothes, something that was said with much affection and sweetness. That was then.
Today we don’t have names; sometimes we are all his sons. He knows us by what we do. Our boy at the bank. Our boy at the ranch. Our boy who works up the road. Our boy who lives next door. The one that’s married to Clyde. Grandchildren are strangers who occasion Thanksgiving dinners. My youngest sister and I no longer correct him. We’ve learned to change the subject quickly when things start going south. We’ve learned to ask for help, and we’ve learned from others and from some of the valuable resources we have discovered in literature and film. This is textbook Alzheimer’s. This is our life.
Though he doesn’t remember the names of the children he loved all his life—children whose minds and hearts he formed and cultivated with loyalty and faith and books and exuberant stories and songs—he does remember that empty plastic milk jugs go to the blue recycling bag in the garage. He remembers that he flew 35 missions over Germany in World War II, that he came home on the Queen Mary, which docked in New York, that he took a train back to Laredo and walked at midnight from the train depot not to the home of his family but to my mother’s house on Laredo Street to ask her to marry him. It is my mother who is his anchor to this life. He is certain only of her. The rest of us are strangers on the periphery of a life he himself no longer recognizes.
At first we did not speak of the disease to others, believing that might rob him of dignity. The diagnosis didn’t surprise us, but almost everything else has, including the swift degeneration of his beautiful, complex mind, the mind that with my mother’s built all our lives, built enterprise, sent children to college, ran a ranch, fueled imagination, grew gardens, and put love before all else.
Why am I writing this, that which should be so private? I am writing this to understand on some very elemental level where my father has gone.
Driving his own vehicle was one of the last vestiges of Dad’s independence, one of the last exercises of his own will. We’d come up with ways to disable it. On many occasions we tried to tell him that his driving days were over, which always led to increasingly futile arguments. My sister Amanda told us that the Texas Department of Public Safety might be an ally in revoking my father’s license. In the end, it was true, but the agency wasn’t as helpful as you might think it would have been to help us get someone off the road who presented a danger not only to himself but to others. The local DPS office said that my father would have to give up his license voluntarily. If he didn’t have any accidents on his record, there was nothing they could do. (He did have three minor accidents over several months, but no citations.) After I explained the situation for the umpteenth time, they finally gave me an address in Austin. I quickly sent off a letter. The Austin office responded not to me but to my father, saying that someone had reported a problem with his driving. They specified that a package from the Texas Department of Health (TDH) would arrive and that he and his doctor would have to fill out some forms. I intercepted the package, and exercising power of attorney, gave my father’s doctor permission to fill out these forms and forward them to TDH. Unfortunately, TDH sent yet another letter addressed to my father explaining that if he didn’t fill out the forms they would have no recourse but to recommend to the DPS to revoke his license. (Had I known that not answering the first letter was going to speed things up, I would have ignored it.) Finally, after about four months DPS wrote to say that since my father had not complied with the forms, his license would be revoked in 30 days.
Now came the really tough part. Someone had to tell him about the letter. Since there were no other takers, the task fell to my sister Meg and me. We approached him, and I started to explain the substance of the letter, pointing only to the word “revoked” at the top and summarizing the rest.
“I’ll just shoot myself if I can’t drive,” he said, prompting Meg to hastily run to the bedroom to hide in her clothing the old .22 that was propped in the corner. She exited my parents’ house like Chester in Gunsmoke, dragging the leg that would not bend for the length of the rifle, never stopping to check whether the chamber was loaded.
That evening I was deliberately late in arriving at my parents’ house to take them to Mass. I told my Dad that we were out of time and that I hadn’t brought my key to his car. He said I could use his key, but only if I gave it back when we returned. I knew this was my opportunity to take away his only other set of keys. He would later call me a liar for not returning the key; Meg would be called a thief for taking the old .22 out of their house. To an Alzheimer’s caregiver this is called therapeutic lying—do what you have to do, say what you have to say.
A couple of days later, Dad calmed down and told us with dignity and a tight upper lip, “This is the way it has to be,” which made for another round of high-pitched emotion as we understood the weight of his acceptance of the new plan.
The driver’s license issue is settled but somehow not forgotten. Only yesterday he asked Meg if she would help him get a car. When she declined, he became angry. Angry with her, he’ll forget he’s been angry with me because I also said no. Then it will be her turn again. And so it goes. This afternoon he asked his stockbroker to help him get a car.
When I think of this process—this downward spiral of the mind while the will persists—that sometimes moves mercifully fast and other times arduously, painfully slowly, I contemplate the functions that have fallen from my father’s judgment to ours. Asserting control over his life has seemed unnatural and out of the order we assume our lives should follow. A sense of humor is one of our most vital survival tools. After the crying, you need to laugh a little. And we do—at the smart Armani clothes and leather goods he came home with when he was last mobile and still knew how credit cards worked; at Meg limping out of the house with a rifle in her clothes; at our becoming our father’s sons; and at his 30-year reference point for everything. “I haven’t had this (guacamole, calabacita, ice cream, pie, a cold beer, etc.) in 30 years,” he says.
nce a man, twice a child. Over my lifetime, I’ve heard the dicho so many times, but only now that my father is ill do I comprehend the colloquialism in full.
There is a way my sister and I feel when we walk together from our father’s house. It is sometimes the frailty of him that tears away at our composure, the need he has to tell us something in a vocabulary now pared down by the escalation of the disease, the struggle he has made to articulate what he feels but for which he no longer owns the words.
Other times it is understanding that he hasn’t a clue who we are or that what we have talked about has no meaning beyond the moment in which the words were spoken. This in stark contrast to the man who always took into account the views of his children.
Using the scanner in my office, I’ve made a chart for his refrigerator door. A picture of each of us forms the chart, bears our names and birth dates, the names of our children, where we live, and what we do for a living. When I gave him the chart, he wept, telling me no one had told him he had children. He wept inconsolably like someone who had missed the opportunity to love what had been his all along.
I miss him terribly. I miss his counsel and his musings. Sometimes it is his kindness and wisdom that I recall, remembering the garden variety misdeeds and the more serious red-handed infractions that brought me to a stern chat with him in his car or at his office, conversations that might end—depending on how seriously I had veered off track—with, “You never give up on your children.”
One day recently as I sat with him at the kitchen table, my sister on her way out the door kissed him on the forehead and said, “Bye, Dad.” He looked impish and said, “Quien sabe quien sería, she always calls me ‘Dad.'” [Who knows who she is?] I started to say, “Well, you are our Dad,” but the words never made it out. I pulled the chart off the fridge door and once more told him the story of us.
There is this way we love our mother now, making sure she knows we are nearby. Sometimes we speak with our eyes, for she is very sensitive to speaking of things my father won’t understand. She spares him any discomfort and accords him every respect, sometimes answering us by rote, “You’ll have to ask your father about that.”
Sometimes my sister and I double back to try to find the place that might mark the beginning of the disease. I remember being stunned several years ago at the serious attention he paid to a piece of Ed McMahon mail that apprised him he would be a millionaire, something that normally would have found its way quickly to the trash can. My sister said it was the constant telling of his war chronicles that told her he was in trouble. Whenever it might have been, I feel a rush of unspent panic for the moment he recognized that the disease had begun to claim him. Or was it as we would like to believe, that he never knew it had arrived?
It wasn’t long ago, near the end of the decade just past, my father and I as we worked together at the ranch had one of our customary discourses about the pathos of mortal life and the hereafter. He said, “Even after death we go on living as long as we are remembered.”
There is a surreal nature to recent times with him, moments in which I understand that although I’ve lost him in this world, in loving memory, mine, he persists. These are moments of something akin to an alignment, a shoring-up, of meaning and time—”now” with an overlay of “then”—moments that I lose my breath to this measure of love.
y father was still driving in the late 1990s when my mother was hospitalized for a short length of time.
That hospital stay occasioned one of the first times we noticed something was wrong. He seemed confused about my mother’s condition and the logistics of getting to and from the hospital. He masked it by making jokes about having made a wrong turn on the way home and ending up some place he didn’t need to be. Taking a wrong turn or the long way home was one thing, but ending up on an airport runway was quite another. Leaving the hospital, he had followed the car in front of him through a gate and ended up on the runway.
What we would understand increasingly over the next few years is that a stable environment and a daily routine that does not waver much are the glue that gives an Alzheimer’s patient his or her fragile hold on the world. Some of us learned the hard way.
Thanksgiving 2001 was an eye-opener. Except for going to the ranch, it would also be our last trip out of town. We drove to my sister’s home in Angleton for a long weekend that would include a side trip to Houston to see my niece’s post-Thanksgiving performance in “The Nutcracker Suite.” Despite the way he isolated himself and couldn’t be coaxed from his reserve, our dinner was pleasant and uneventful. We all discussed our trip to Houston, the logistics of getting to our hotel, and what we might do while we waited for the performance.
Friday morning, as we were preparing to leave for Houston, my father woke and told us he needed to see his doctor in Laredo immediately. He couldn’t articulate, but it was obvious he was in peril. Later we understood that removing him from the comfort zone of his own home and putting him in the company of a few unfamiliar faces had disoriented him.
We quickly left for Laredo, with my father still anxious about seeing his doctor and my sister and niece sobbing in the driveway. His urgent need to see his doctor subsided as we got closer to Laredo, closer to what was familiar.
In July, both of my parents fell—my mother on the hard tile of the family room and my father in their bedroom as he was trying to get to her after he heard her cries. The paramedics took my mother to the hospital; they cleaned up my father’s bloody face, but determined he didn’t need stitches or a trip to the hospital. Linda, our caretaker, stayed with him at the house and I took my first ambulance ride with my mother.
It was a long night.
Without my mother in his daily life, my father walked around the house aimlessly. He paced. He was looking for something but could not figure out what or whom it was he was supposed to find. His confusion escalated.
We stumbled from one week into another. For the first two weeks he had some kind of idea where my mother was and that both of them had fallen. He was very embarrassed at the scabbed cuts on his bruised, swollen face. He would sob uncontrollably when he saw my mother because he knew something was wrong but he couldn’t figure out how to fix it. The first t
me he saw her in her hospital room, h
kissed her and wept and told her aloud, “I love you.”
The next two weeks his mental state spiraled downward. We had hoped that after my mother came home we could get back to where he was before the accident. But the familiarity of his environment had been interrupted too long. He can’t understand that my mother is still healing and cannot walk with him or help him with day to day tasks. We’ve hired home health caregivers to provide 24/7 care for my mother while she heals. Now there are strangers in his home who come and go in shifts.
The challenges we now face include drastic mood swings, weeping, a surge in his temper, and foul language that was never uttered in our house.
Recently during an interview with the home care agency, he knew we were talking about him. In mid-conversation he came up behind me, gave me a big bear hug, and thanked me for taking care of him. In that moment we were who we have always been, daughter and father. About an hour later the hug was history and I was a stranger from whom he refused to take his medication. The journey continues.
In one of the days that I am visiting my mother at the hospital, I am watching my parents from a distance, almost as though they are not my parents and I am watching a scenario removed from my life. My mother labors to return from the nether-land of the anesthesia that put her under for hip surgery and the morphine that followed. My father is at her side, attentive and impatient at a situation in which his presence has no bearing. He struggles to assert that he is the one who makes decisions. “She is my wife!” he says stridently.
It is 105 degrees outside and he is wearing a sweater. He removes and puts back on his sweater perhaps 15 times in the hour that he visits my mother. Sometimes he gets the buttons right, other times not. He also gets up from the bedside chair repeatedly to pace. He is calling his handkerchief his sweater.
My mother stirs and half opens her eyes. He leans over her bed to kiss her, asking, “Are you all right?”
Forgetting what happened to him in the fall, she asks tenderly, “Joe, what happened to you? How did you hurt yourself?”
He gives her an unintelligible explanation for what has happened to both of them. She nods, and holding his hand, slips back into rest.
n a more recent day I am at their house trying to get my father to eat lunch. He unwraps the burger he asked for, dismantles it piece by piece, puts it back together and rewraps it in paper. He will only eat french fries that are short. He has a problem with the long ones.
It is late August and two of my sisters have broached the inevitability that my father’s rapid decline may necessitate putting him in a home. The idea strikes to the core of me and I recoil in protest. How would we do this to a man who so cared for us? How could we take him from my mother? How would we remove him from what little helps him hold things together?
One way or another those questions answer themselves on a daily basis. But on one of the days that the idea of doing this is still new to me, I feel an immense tenderness for all the good, kind things this man did for all of us and for me in particular because I tested his love every way a child can. He put his hands in fire for me—and not just once.
On this day I cannot stop weeping, even when I will myself to do so. The part of me that understands that he needs far more care than we can give him at home races forward to get used to the topic of a rest home. It’s a moral wrestle, one that tightens the air in my chest and smashes my heart. One of the justifications Melissa and I exchange is that this isn’t really our father, that the disease has claimed him and replaced him with this sometimes violent-tempered individual who is making our mother’s recovery very difficult. “He is gone,” we tell ourselves, and for the moment we believe it.
At his house, he motions for me to sit next to him to watch TV. After a few minutes, he reaches over to touch my hand, asking, “Are you all right?” It is then I understand that my father persists like a dying star.
Melissa Leandra Guerra is a gas-production accountant in Encinal. María Eugenia (Meg) Guerra is a rancher and publisher. She lives in San Ygnacio.