My mother is not my mother anymore. It happened shortly after her 90thbirthday, which we celebrated by throwing her a huge party. She was the belle of the ball at that party, and we have pictures of her surrounded by family and friends. Looking back, it was like that scene from Alice in Wonderland, where one moment, Alice is at an engagement party being thrown in her honor and, in the next moment, she has followed a rabbit down the rabbit hole. Like Alice, my mother slipped down a rabbit hole and now remembers her real life only in her dreams. The rest of us, her family and friends, can’t reach really reach her. We are still at the party on the other side.
As a result of having fallen down the rabbit hole, my mom has become one of those elderly people who asks the same question over and over again. In the beginning, my brother and I used to try to get her to see that she was repeating herself, but eventually we came to understand that, as the Alzheimer’s had progressed, she had become a prisoner trapped in some alternate reality. Her repeated questions may be her only way of reaching out, her way of staying connected to us. We are the only remaining evidence of the life she created for herself.
Eventually, we learned two essential communication skills that helped us reach through to my mother: Improvisational conversation and lying. We had never thought of lying as a communication skill. Once we were adults, my brother and I never kept things from my mom. No matter what happened in the family, we told her the truth. It was one of the things on which we used to pride ourselves. I’ll never forget the day we were discussing how to tell her about a change we were making to her estate, when the attorney stopped us dead in our tracks.
“Why on earth are you even considering telling your mother about the changes in her estate? That is not the kind of conversation your mother needs right now.” She was looking at us in a way that commanded attention, the experience thrusting us back to our childhood when we would occasionally be reprimanded by Sister Superior, the principal in the Catholic grade school my brother and I had attended.
We were shocked. “Look, we always tell her the truth. We really don’t keep information from her. She was always really worried that she would get cut out of what is going on in the family, so we promised to always tell her the truth.” I am silently reviewing the Ten Commandments trying to remember which one is “Thou shalt not lie” so I can offer it up as divine evidence if needed.
“Okay, look,” she said, and I could tell already that whatever number it was, “Thou shalt not lie” was not going to hold any weight with our attorney, “I appreciate that your family has this huge commitment to the truth. It’s admirable. Very virtuous. AND, you need to cut that out right now. Those days are gone. The truth works for you two, but it doesn’t work for your mom. She is unlikely to correctly remember what you tell her. If she becomes upset and confused, it may be hard for her to explain what is going on to her caregivers. It’s a set up for her. From now on, you lie to her and tell her only happy things.”
Honestly, we didn’t believe her. We questioned her credibility as an attorney and wondered how on earth she could practice law while advising people to lie. We had previously thought of our attorney as being above reproach, the most ethical person we know, a warrior for all kinds of people in vulnerable life situations, our family’s consigliere for years, and yet here she was advising us, in fact insisting, that we lie to our mother. It turns out that was really solid advice. Shortly after that conversation, my brother and I began to get what we now refer to as “dead relative” calls.
“Donna? It’s me.”
“Hi, Mom. What’s going on?”
“Listen, your brother said that Barry died and I cannot believe you didn’t tell me. How did he die? Why didn’t you tell me?”
“Oh, mom,” I say as gently as I can, “We did tell you. In fact, we were all at the funeral. He had been sick for a few years and he eventually passed away. It was just last month.”
“Are YOU telling ME that he’s been dead a month and you didn’t tell me?”
“We DID tell you, Mom. We all went to the funeral together.”
“Don’t you lie to me!!!!” she screamed into the phone, furious at being kept in the dark. “You didn’t tell me he died. You think I wouldn’t remember going to that funeral? You think I don’t know you’re lying? I know!!!! I know what you are doing.” And with that, she hung up the phone. I was left staring at the empty receiver haunted by the last thing our beloved attorney said to us, “From now on you lie and tell her only happy things.”
My brother and I had to actually practice lying to her. Something would happen, some relative or friend of hers would die, or someone would be sick, and we would have to call each other up, come up with the story we were going to tell her and then tell that story over and over again until we had the facts right. My mother could no longer process new information. She was often confused and as a result upset. We had been hoodwinked by this vicious disease. Eventually we became masterful liars. These days we do almost nothing but lie to her. Lying, as it turns out, is access to the rabbit hole.
The improvisational conversation was a much easier pill to swallow. Since my mother asks the same two or three predictable questions, we decided to make a game out of it. We would answer each time as though it was the first time the question was being asked and as though it were the most important question of the day. The game had one rule - we could not duplicate an answer.
“Is it going to rain?” This is her most reliable question.
“I don’t think so, Mom.” We always go for the easy answers as a warm up exercise.
Ten minutes later, “Is it going to rain?”
“You know, it looked like it earlier today, but it seems to have cleared up.”
Another ten minutes goes by. “Is it going to rain?”
“Do you know that they are reporting that this has been the wettest NJ winter in about 25 years, but it doesn’t seem like it is going to rain today.”
Once again, “Is it going to rain?”
“Mom, cats and dogs!!!! It is going to rain cats and dogs all night long!!! I am just praying for thunder and lightening. I love a good thunder storm. Do you?”
We sometimes do this for hours and hours at a time. These days my brother and I pray for the rain conversation because it is easier than answering questions about relatives that have long since passed, but who my mother wants to visit. She worries that my Uncle Pete, who passed away seven years ago, hasn’t been to visit her. She gets upset that she hasn’t seen him, she thinks he is sick and we are keeping the sickness from her. We gently remind her that he passed away. She thinks she missed the funeral and begins to cry. We tell her, no, she didn’t miss it, she was there, that she sent flowers that said “Bella de Sorella.” Then she wants to know why my Uncle Pete died and left her here “all alone.” One of the many unanswerable questions that comes along with “dead relative” conversations. You can see why we pray for rain conversations, even though they are conversations that go nowhere.
Other lies included behaviors on our part that were specifically designed to protect my mother’s dignity. I remember days when my mother would come to visit and we would have dinner and then, 30 minutes later, she would ask when we would be eating dinner. We would, in the name of protecting her dignity, re-set the table, drag leftovers out of the fridge, and eat dinner all over again. One time we did that three times in an afternoon, all in order to preserve her dignity. Had we told her the truth, she wouldn’t have believed it. But, even more than that, I could not bear the heartache of actually saying the truth out loud.
I would do anything to have spared my mother this life. I want her to be remembered for the countless lives she touched, for being a trail blazer in so many areas of her life, living through the heartbreak of divorce in the early 70’s and not letting that divorce define her. I want her to be remembered for making the best eggplant parmesan, for teaching us all how to make Italian Christmas cookies, and for desserts that almost always had Jello, coconut and cool whip.
I hope that, when I am older, I am spared having to walk down this path. I don’t want my children and grandchildren to have to lie to me and worry about preserving my dignity. I want them to remember me as the second generation of women in their family who created magic and miracles. I want them to say that I traveled and I wrote and made things beautiful. I hope they say that I was a strong influence because my mother who raised me was also a strong influence, as was her mother before her. I want to be remembered as the person who threw the party, not someone who ended up watching the garden party from the rabbit hole.