Call Before You Come, So You’re Sure I’m Home
Girls’ Night Out, the name our families gave it, started seven years ago. I felt that time was passing too quickly, and I wanted to find a way to spend more time with my mother. With his aunts Enis, Lucy, Mally and his mother, Anna, sliding behind the invisible barrier of Alzheimer’s and slowly shrinking into death, my husband and I knew all too well that loved ones can fade out of reach. Each Tuesday, my stepfather’s bowling night, after teaching my eighth grade English classes and cooking dinner for my family, I hurried to pick up my mother for our weekly outing.
On those nights, we usually went to the early show of a PG-rated movie, followed by chocolate ice cream cones at Friendly’s, TCBY, or Nuts About Ice Cream. When there wasn’t a movie that met her standards of no nudity, no sex, no foul language and no animations, we sometimes sat in the stands at a local college and cheered on the women’s basketball team. Mom had played varsity basketball in high school, and I, too, had played varsity in my high school days. She played when the court was divided into thirds, and I played when the court was divided in half. We each ran the length of the court, shot, and rebounded in spirit with the women, cheering their full-court successes and delighted at the crowd gathered to watch the games. In the early years, we would laugh together and make corny jokes as we sat in the bleachers or chatted over cones later. She was fond of saying that the two of us never ran out of things to talk about.
My family liked to make jokes about the movies I saw on Tuesdays since my husband and I are more likely to seek out foreign and low-budget films, but I was willing to watch movies with titles like Grumpy Old Men, Grumpier Old Men, and Mr. Holland’s Opus to be with my mom and to hear her laugh with the same delight she had expressed in my childhood, watching I Love Lucy.
It wasn’t until six months before my stepfather’s death, three years ago, that there was a change in Mom. She talked less, beyond her usual gracious inquiries about my husband and my daughters, but she never forgot to tell me that she loved me. She responded with "Yes" or "No" to my questions, but, as the weeks went by, I found myself questioning her more and more, trying to draw her out. She became defensive and irritated by the frequency of my questions. I explained some of her reaction away because my stepfather had cancer, and she was dealing with his limitations and his petulance, 24-7. Mom would never discuss relationship problems. Her rules for marriage included a loyalty that would not allow for speaking about marital problems to anyone else, children included. If she ventured into that territory at all, she would end it abruptly, saying, "That’s enough about that," and no encouragement could convince her to continue. Still, we kept to our routine of movies and ice cream, but conversation diminished or became repetitive as we licked our cones.
After my stepfather’s death in December, my two brothers and I began to realize that Mom should not live alone. At first we denied her confusion, attributing it to the stress of caring for my stepfather and then suffering the loss of him. Time did not improve her condition, but she was energetic, almost supercharged, and talking about being able to live alone. We wanted to trust her judgment and accept her decisions. She was still our mother. None of us wanted to be the parent of our parent. She would stay in the house and drive herself to nearby stores and to her activities at church. Relieved, we began to consider what car would be best for her since the lease on hers would soon expire. My older brother took her to several dealerships to see what was available.
My brothers and I were living in two dimensions: we continued to interact with Mom as though this plan for independence would work, but at the same time we were talking about our doubts to each other. I substituted for her partner as Mom drove her Meals-On-Wheels route, carrying a hot lunch and a bag meal for dinner to people needing assistance to stay independent. Her route was a big one with more than twenty stops in our town and into the rural area beyond, which she and her partner volunteered to drive once a month. Mom still knew all the roads and stops on the route, but I pressed the floor boards of the passenger side with an anxious foot many times and clutched the seat as she made close turns. The next and final time I substituted, I drove. Fortunately, Mom had driven Meals for twenty-five years, a good place to retire, and she decided she would, now that she had to manage on her own.
From snippets of conversations, we discovered that she was going up and down the stairs of her house several times a night to check if the doors were locked or to see if she had turned out lights. She had also admitted people to the house without first checking who they were. I rescued her a few times when she called from a neighbor’s after having locked herself out of the house, always assuring her that this could happen to anyone. My brothers and I each received phone calls that were confused and repetitive. She had become dangerously thin over the months of caring for my stepfather and during the months she lived alone, so I stopped by nightly on my way home from school to take her home for dinner with my husband and me. Following dinner, she enjoyed watching Jeopardy and Wheel of Fortune, but she could no longer discover the word or phrase on Wheel as she could in the past, and I stopped competing with her.
The next step, just four months after my stepfather’s death, was to convince her to move to a secure place where she could receive a minimum of assistance. The idea of an apartment appealed to her, so we moved her to a two-bedroom apartment in a complex where she would receive dinner and six hours of assistance weekly. Under the ruse of needing a car while mine was being fixed, my brother returned her leased car. I told her that she no longer owned a car, a job none of us wanted. Although this did not sit too well with her, our response was always matter-of-fact and one we knew she would not refute: "Mom, it is better this way. You wouldn’t want to hurt yourself or someone else after all the years of safe driving you have had."
Our Tuesday nights together turned into three or four nights a week when I stopped by to keep her company. At these times, I would show her repeatedly how to operate the washer and dryer in the communal laundry room just three doors down the hall from her apartment. For most of her life from wringer washer to automatic washer, on all but the coldest days, Mom hung laundry outside to dry because she liked the smell of it. As a child, I often helped her fold the crisp, clean-smelling sheets, towels, and underwear. Now she could not locate the laundry room or remember how to operate the machines. She helped me fold the wash.
On the nights when my husband came with me to see Mom, he diverted her attention in conversation or television watching while I threw away the spoiled food in her refrigerator and half-eaten cookies wrapped in napkins in her cupboards. She really didn’t need much food, just something for breakfast and lunch, but she clung to her habits of being a housewife for over fifty years and wanted to do grocery shopping. If needed, I drove her to the store when I visited. She did not understand that a van from the facility went on two weekly runs to the grocery store and to a local mall so residents could get whatever they desired. If I didn’t happen by when she needed something, she walked across two busy streets to reach a supermarket. When I scolded her for not calling me, she told me, in her I-am-the mother voice, that she had been hungry for chocolate ice cream, so she went and got it. End of conversation.
My older brother, the oldest of the three of us, and I, the baby of the family, live locally, so we take care of Mom’s immediate needs. My other brother, the middle child, lives in the center of the state. Through all of the decisions to be made, the three of us communicated by phone, by e-mail, by meeting. During the first summer, the two of us here had planned vacations at the same time, so it was decided that Mother would spend three weeks with our brother, who lives on a farm in central Pennsylvania, a favorite place of Mom’s to visit over the last fifteen years. He was looking forward to her visit and spoke of having time to walk the fields with her. Mother always liked farm life, having spent some years of her youth on farms. She and my brother have a special connection that I especially cherish for her now. My husband and I would drive her half way where my brother and his wife would meet us, also driving half way from their farm, to pick up Mom.
The night before we were going to take her to the restaurant meeting point, I stopped by her apartment to do laundry and to help her pack. When I left her, we had two suitcases and a box ready for the trip. By the next morning, she had totally redone the packing. The suitcases no longer contained what we had packed the night before, and she had added drawers from her sewing tables, wrapped in plastic, to the pile. We tried to talk her out of some of the things, but she was adamant, so I quickly added a few necessities to the suitcases and secretly removed a few things before we left. So often now, I became sneak and teller of half-truths.
The visit that my brother had happily anticipated was only a partial success. Mother roamed at night, and he and my sister-in-law feared for her safety on the old farm steps. She wanted to help around the house and in the kitchen but was unable to do all but the simplest tasks. She forgot that she wasn’t supposed to let the cats out of the house because of the two German Shepherds outside. She was not content to sit and needed constant attention. After a few days, she continually asked my brother to take her home, volunteering that she would stand by the road and take the bus so she wouldn’t be any trouble if he were too busy. Caretaker guilt is some of the nasty fallout of dementia.
Fainting in church was the episode that determined her next move. After hospitalization and two weeks on a nursing floor in the nursing home attached to her facility, it was clear that Mom could not manage to return to her apartment. In her two week recovery stay, she had considered herself one of the staff and became quite popular helping the nurses and cheerfully visiting the others on the floor who were bedridden. However, most of the day was spent with little other stimulation. Her frustration showed in deteriorating health. Her response was to remove more than one security bracelet and leave the building, scaring staff and us alike.
Just six months after moving her from the house she had lived in for more than twenty-five years, we would need to further reduce her possessions to fit smaller accommodations, this time at an assisted living facility specifically designed for dementia sufferers. Our search of area facilities led us to a good choice even if it was at some distance. The facility was only two years old at that time and was designed by someone who knew the clientele. The central building contains a community room, a crafts room, the nurse’s office, a barber/beauty shop, and indoor porch-like areas, furnished with wicker and flowered cushions. Four wings, each a different color, radiate off of each of the four corners of the main building. In each wing, a maximum of 14 people each have their own bedroom/bathroom and share a living room, dining room, shower room, and kitchen, creating a family atmosphere. Residents can go outdoors and walk on the sidewalks through the lawns between the wings whenever they choose. Because of their mental condition, the residents think they have unlimited freedom. The careful design of the buildings and grounds means that Mother and her friends do not need to wear security bracelets and do not feel confined. The days are filled with activities and occasional field trips in the care and company of a remarkably compassionate staff. Residents walk the halls at anytime of the day or night, unrestricted. Movement for some is an obsession, as though they are going to be able to catch up with their lives somewhere on their endless laps around the central hall.
My visits have become weekly and, when I am with her, conversation becomes the same, repeated for as many times as I can manage to respond before I have to leave: "How’s your husband? How are the girls?" "You’re looking good." When I leave, she walks me to the alarmed door and says, "You know I love you, honey. Come anytime." I kiss her and tell her I love her, but leave wondering how many more family gatherings Mom will be able to attend and how long she will continue to qualify to stay in her blue room in the blue wing with the plaque for 25 years of volunteering for the Meals On Wheels program hanging behind her blue chair. (Blue is her favorite color, except for the few months when she said it was red.)
When asked what she has been doing, she describes cooking, cleaning, going to church and teaching; all activities she did in the past, swirled in a time warp blender. Mom was a faithful churchgoer and taught Sunday school for 34 years. She was graduated from the Traphagen School of Fashion in 1968, two years after my father died. All her life she loved to sew, so, after being a housewife for 28 years, she moved to New York City, lived in tiny rooms for two years, and was an excellent student. When she was graduated, she was asked to stay on as a faculty member, but she wanted to return home. There she supported herself by sewing for others and by offering sewing lessons until she married my stepfather.
For the past two years, Mom has lived in a place she likes, or likes now after an adjustment period. She walks through her days in a reality unsupported by memory and with no awareness of the future, living in an immediate present of crafts, sing-alongs, trivia games, and visiting Girl Scouts, all instantly forgotten. She struggles with the pieces of the puzzle of her life, some blank, some jagged, and some missing, trying to make sense of each day. Shuffling and using the rails on the walls, she travels the halls of the facility, sometimes by herself and sometimes holding the hand of another resident. In secretive huddles, the residents stop and talk with each other in pleasant and sometimes blunt ways, but all messages vanish before there is time to react.
Periodically, Mom has suffered falls for which there are no medical explanations beyond the progressing dementia. Some falls had soft landings, leaving no marks. For both of the serious falls, I arrived for my usual visit before the home had a chance to notify me. I discover her in her room, propped in her chair, with black eyes, cut lips, bruises and, with one fall, a broken nose. Mom forgets the falls and peers through swollen eyes, wondering why I am asking what happened. I tell her she needs to learn to land on the padded end and she laughs. For weeks of healing, she is surprised each time she sees herself in the mirror. I see her wounds and dread the inevitable next fall that could further diminish the quality of our lives.
Memory is the glue that binds us together. My brothers and I have tried to stir links to our past, hoping in particular that she will remember our father and hoping, too, to reverse her dementia, which we fear for ourselves. We share the rare bits and pieces of her responses and repeat them to each other as if we have discovered the secrets of the universe. Recently I drove Mom across a bridge which spans the width of the closed steel plant here in our steel town, through the silent buildings and stacks, the empty ore pits, and past the one remaining ore bridge. This plant is where my father had worked as an electrician during their marriage and before his death in 1966. I asked Mom if she remembered the Steel and commented that she must have packed a lot of lunches for Dad. I told her I remembered her driving in our only car to the gate to pick him up after the 3-11 shift. I remembered watching for him coming up the hill from the belly of the plant, swinging his lunch kettle. It was then she said, "I loved him very much." And when I could, I replied, " He loved you very much, too."
As we leave, she sometimes says, "Call before you come, so you’re sure I’m home." Other times she calls to say she plans to drive over and wants to know if we will be home. The answering machine less and less frequently contains several messages from her at two or three minute intervals. There was a period of a few months when she would call and tell me she wanted to visit her parents. Time and time again I had to tell her, as if for the first time, that her mother and father were dead, to which she replied, "Oh, I didn’t know that." The most difficult series of seven messages, though, we received late one night after returning home from a day of fun. She asked my husband’s voice on the tape if she could speak to me. Another a few minutes later repeated the request, followed by a pause for him to respond. The same call two minutes later. And so on. The last one concluded with the question, "Don’t you want to talk to me?"
The conversation I would rather remember is the one we had recently on a warm summer night. I was elated to hear the tone of her voice when she answered the phone, which told me she had had a good day. She had been given a shower and she was in her nightgown, ready for bed. We were both being cheerful and funny and before we hung up, I told her I would be going to bed soon, too. She replied, "Okay, honey, we’ll meet in our dreams." I told her I would like that. Oh, Mom. I really do want to talk to you.