There are post-it notes all over my mother’s room at the assisted living place where she has lived since being diagnosed with Alzheimer’s in the summer of 2005. She loves post-it notes. She likes them in bright colors like hot pink and green. Some of them have her name on them: A Note From…. She has always like post-it notes—they used to accompany the many newspaper and magazine articles she sent my sisters and me before her illness stole that ability—but now it seems she relies on them to accompany herself.
Many many of them say “Remember to thank the girls for the flowers.” Since my sisters and I send her flowers every two weeks and since she always thanks us when we call her, this one seems to be working. Although, instead of one post-it with that instruction, she has dozens, of various colors, pasted on her mirror, her now defunct computer screen, the wall by the door out of her room. She also has a lot of notes to call one or the other of her daughters, which she seldom does, relying instead on our calling her. We do it regularly, but nonetheless she complains to my aunt that no one calls her and no one tells her what is going on.
My mother also collects newspapers, magazines and other scraps of paper on which she has more written notes to herself. Every time my sisters or I visit we undertake to clean her room of these old and yellowed papers and periodicals but she has a hard time letting go. We find it works better if we double team her: one distracts her with conversation or a walk, while the other stuffs papers into plastic bags and hauls them down to the supply room to dump them in the trash bins. If she catches us, Mother insists on “going through” each bit and bob before we are allowed to toss it. Sometimes we help her do so, weeding out what few important papers have not been picked up by my uncle, and collecting cards and letters she wishes to save, as we try and separate those from months and months of reading material.
When we cleaned out her house to sell it before she went into assisted living we found file cabinets full of newspapers and magazines in the basement, but now this obsession has taken on a new and more potent form and it overwhelms even her sometimes as she has, in her small one-bedroom flat, nowhere to hide things. In addition, it is clear that my mother reads the same paper or magazine dozens and dozens of times, each time it is new to her; which may explain why she is so reluctant to let go.
This last visit my sister and I were confronted with an entire couch full of paper. My mother insisted she had meant to go through the piles before our arrival. Instead I sat with her patiently and explained that I would go through the notices from charities, the letters, and the papers and keep those I knew she wanted while my sister threw the larger stuff away. She seemed, for the first time, almost placid about it.
In the pile I kept were some things I would take to my uncle and some things I would take to my heart. A note marked Thursday said CALL (her doctor) RE MEMORY & KNOWLEDGE LOSS TERRIFIED kicked me in the stomach. I have no way of knowing when she wrote this; it could have been and probably was, years old. But it stopped me in my tracks. How must it feel to know and not know why, and then to know and not know, and then finally just not to know.
My mother still insists she is in assisted living merely because she cannot drive. But she is in assisted living because she cannot live.
On one scrap of paper, I saw what looked like the typed copy of my grandmother’s famous poppy seed cake. I was elated, as I had been trying to replicate it for years. But when I examined it closely I saw the recipe read like something out of a fun house. Written when she could still use her computer and printer—which meant it was at least two years old—it said “Soak ½ cup of mohn (which is Yiddish for poppy seeds) in one cup water.” Then “how long?” was in parentheses. Later the recipe called for “3/8 lb of spry (do the math)” followed by”2 eggs separated (that’s the secret).” The end of the ingredient list had “bake—1 hour” and “frost with chocolate frosting.” It did not make me laugh.
Another note reminded her to write her own obituary. Still another, written on the card from the florists, once again reminded her to thank us. On that same card she had also written down the date I would be there with my sister for lunch. She had told me over the phone that she was writing the date on her calendar. And another, crumpled and worn, said “Write my girls, love them, appreciate them, am proud of them.” This one was especially hard to read and drove me nearly to tears even though I have long forgiven my mother the tough childhood she gave us, the years of undiagnosed mental illness that caused mood swings we did not understand, the selfishness., the drinking, the yelling and screaming, the never saying “I love you.” How could I not? That mother has disappeared. She has been replaced by a woman who sincerely wishes to remind herself that she loves her children.
I had flown up to see her for Thanksgiving and to supervise her while she and I were at my aunt’s house for dinner because my mother still drinks. And not a little. She will consume as much white wine as is available (and if that runs out whatever else is around) until she passes out. Several times in the past months she has been very drunk and staff at the assisted living place have called my sister and my aunt who in turn have passed this news along to me.
This drinking is nothing new. It did not start with her diagnosis, which would be understandable. She has been drinking for more than 50 years and it was only when we finally tricked her into getting dried out that the doctors “discovered” the Alzheimer’s. There had been hints, clues, and outright screaming and yelling but we had all ignored it, thinking that her nighttime fuzziness, her memory loss, her odd behavior were due to her drinking. And indeed there is no way to tell when the disease first took hold. But now that it has its progress is inexorable. It is as if with the diagnosis she has gotten worse and worse more quickly.
We have tried various times to try and curb, at the least, her alcohol intake. When I went up and got her and brought her down to visit me last December, I poured non-alcoholic wine into a regular wine bottle and let her help herself. She seemed happy to carry a glass around and was very lucid, for an Alzheimer’s patient, during the visit. But this tactic cannot work in her own life. So her checkbook was taken away and a limit was put on her remaining credit card. Still, she managed to charge a lot of wine on the trips to the store that the staff take the residents on each week. We tried another tactic: my uncle bought dozens of airline-sized bottles of white one and instructed the staff to give her one, just one, of an evening. We all thought that this idea, while brilliant, was doomed to failure. And sure enough, somehow Mother got wine. Either she asked a friend to take her for it or she figured out a way to buy it herself. Even without so much of her memory, so much of her old mind, she can be very crafty and duplicitous in the way of all addicts. When my sister would visit her she would take the wine out of the refrigerator and toss it. My mother began asking the kitchen to keep it for her. When she lost her corkscrew they opened the bottles for her. She drinks it out of a coffee mug or a Styrofoam cup now that she has broken all her wine glasses.
This is not the residential home’s fault. They are not there to babysit. They give her her meds, clean her room (as best they can) and provide activities for her, most of which she says she never goes to, although it is impossible to know. They worry when she is drunk for liability issues, naturally; and we all worry, too. If she is not allowed to live there she will have to go to a much less desirable place. Somewhere in the back of her mind she might still know this, as she might still remember that I offered to have her live with me, and that my middle sister and I suggested she come down south so that there would be two of us to help. But there are no notes to indicate that.
I went and got her for Thanksgiving dinner at my aunt’s so that my aunt and the other sixteen invited guests could enjoy themselves without having to watch Mother. My mother grew angry at me every time I refused to fill her glass or took a full one she had managed to get away from her. Still, in the early evening, while the party was still going strong, she went and sat in a chair by herself and said that I could take her home any time I wanted to. She was clearly not sober and clearly exhausted but the fight to drink more had gone out of her. Indeed she did not even seem to recall being angry at me because as I said good-bye she held me close and told me how much she loved me. She thanked me over and over for coming. And then she stood and waved and waved as I drove away.