In a daze, I hurriedly stuffed my clothes in an overnight bag. I had no idea how long I’d be gone. Hours, days? My mind raced: deodorant, toothbrush, underwear, sweater, a pillow. Everything was going too fast for my brain to process. After weeks of little or no sleep, I was running on raw nerves and adrenaline. I had thought we had more time before this day would come; we all did. While one part of me wanted to break down and scream stop world, I want to get off, I didn’t have the luxury to dawdle. According to the nurse from the home health agency, the ambulance would be here in minutes.
I couldn’t even reach my husband at his workplace to let him know what was going on. My youngest daughter, Stephanie, was hysterical as she held my then three-year-old grandson, Mikey, in her arms. An ambulance was coming to take “Meme,” my Mom, his great-grandmother, to the “doctor house” (hospice). Mikey was fascinated by anything with wheels and wanted to know if the ambulance would ring its siren. I promised him that I’d ask the driver. As the ambulance pulled away, the amenable driver complied, to Mikey’s great delight. He and Stephanie stood in the doorway, waving.
Of course, Mikey was too young to understand the gravity of it all; youth is kindness and innocence. All he knew was how much fun he had going up and down in Meme’s electric hospital bed and being pushed around in her wheelchair. Meme, who had lived with us since Stephanie was nine months old, had been a constant, comforting presence in Mikey’s life from the moment he was born. We all lived together, four generations under one roof. Meme adored Mikey. She held him, rocked him, sang him lullabies, took him on walks, and watched him play in the yard. There had never been a time, a moment, when she hadn’t been there for him, loving and nurturing.
Around 2007 or so, Meme had been diagnosed with early stage Alzheimer’s disease, but it didn’t seem to affect her all that much. She enjoyed puttering around the house and garden, enjoyed watching her Lifetime movies. Some days she might not remember what she had for lunch, but her long-term memory was razor sharp as she regaled us with stories of her childhood in France during World War II.
In hindsight, even though there were clear signs that Meme was getting worse, we had gotten so used to her being “difficult”—her cruel remarks, the sudden mood swings, her memory gaffes and lapses, her stubbornness, her clinginess. At Mikey’s birthday party, Meme demanded to leave after only an hour, claiming she was ill. When I brought her home and tried to return to the party, she begged me to stay with her. She was afraid to be alone. What if something happened? I acquiesced, as I always did. Meme ruled the roost. Stephanie had been furious.
Truth be told, Meme was a constant source of worry, friction, and irritation. No matter what I said or did, I was always caught in the middle. Meme had always difficult, but it was quickly getting out of hand. This woman, strong and independent, who worked well into her 70’s driving 50 miles round trip; it had gotten so bad that I couldn’t even take a shower without her banging on the door, demanding to know where I was. Meme was a prisoner, and she was making me one as well.
When Meme began her precipitous decline, Mikey seemed to take it all in stride. We had tried to shield him as much as we possibly could, but since we all lived together and my husband and I were his primary caregivers while his parents worked, there was only so much we could hide. When Meme was having an outburst, Mikey stayed calm and solemnly observed that she was having a “bad day.” When dusk came and Meme “sundowned” to the point of becoming virtually uncontrollable, he was the first one to say that she needed a “time out.”
In the fall of 2014, Meme’s condition deteriorated rapidly, and by Christmas we knew that something was dreadfully wrong. The moments she knew me—knew Mikey—were getting less and less frequent. She didn’t know where she was, kept repeating the same phrases over and over. And when she was fleetingly lucid and aware of what was happening, it was agony. She begged me to help her, but getting her to the doctor was an ordeal. He decided to change her medications and I went along, grasping at straws. Unfortunately, it only got worse.
Meme began hallucinating—there were monkeys in her room, lying in wait to tear her face off. She refused to eat or drink because we were trying to poison her for a fortune she didn’t have. She would take her medications and then cry that she had made a terrible mistake and would be dead within the hour. Her temper was like a volcano, unpredictable. One time she hurled Mikey’s toy truck at me because I was paying too much attention to him and his newborn cousin, Kevin, whom we also cared for. Another day she threw a bowl of food at me. She hit me on the back when she felt I was ignoring her. Even though Meme was eighty pounds soaking wet, she was as strong as a bull. Aside from the Alzheimer’s and advanced age, the doctor told me, there really wasn’t anything wrong with Mom. Her heart was strong but her mind was mush.
I couldn’t bear to see her like this. My mother had always been so proud and vain, meticulous in her grooming and appearance. Now she was a shell of her former self, someone we barely recognized. Yet despite the tension and stress, working full time, caring for the grandbabies and my family, I was determined to keep her with us for as long as I possibly could. I did everything for her; dressed her, bathed her, cut her nails, phoned in her prescriptions and made sure she took them. There was no one else. We were all she had.
Through it all, Mikey displayed a patience and grace beyond his tender years. When Meme called for him—“my Mikey”, confusing him with my deceased brother—he’d come running. He’d sit quietly next to her or lie alongside her in bed and pretend read from his picture books. He also became my little helper. Once when Meme was yelling non-stop for me, he dutifully fed Kevin his bottle while I attended to her. Mikey was quick to kiss Meme and tell her how much he loved her. Most of the time she didn’t know who he was, but I like to think it still gave her comfort.
If the days were challenging, the nights were abysmal. Meme screamed all night long, calling for me, her parents, and my brother. No one got much sleep. One night Stephanie found her, disoriented and confused, wandering the hall; another time, we found her in Mikey’s bedroom. Once I went to bed and found her there, curled up. We grew fearful that Meme would hurt herself climbing in and out of her bed, so we put her mattress on her bedroom floor. Mikey jumped up and down on it like a trampoline.
Something had to give; we, Meme, couldn’t go on this way much longer. I was on speed dial with her doctor. I still clung to the dwindling hope that Meme’s bizarre symptoms were due to the side effects of her medications. Finally, a sudden hospitalization gave us the answer: Meme was in the end stage of Alzheimer’s. The end stage! When we had gone to the doctor in early January, she’d been feisty and combative. Now, in mid-March, she was in diapers and barely eating baby food. The hospital nurses were amazed; they told us that they rarely saw a patient in such an advanced state still being cared for at home by family. At this stage, most families had given up and placed them in a nursing home or simply abandoned them in the hospital, never to be seen or heard from again.
Meme’s prognosis was poor. Initially, we thought we had a few more years, now it was only months. As it turned out, we didn’t even have that. Two weeks after Meme’s discharge from the hospital, her visiting nurse sadly told us that she only had days. And so we rushed her to the hospice on that chilly spring afternoon. As a family, we had decided that it would be too traumatic to have Meme pass at home. Mikey—indeed, all of us—had already seen and been through too much.
At the hospice, after Meme and I settled in, the kids and I debated whether or not they should bring Mikey and Kevin. Meme was one step above a coma; she was comfortable, blissfully unaware. Kevin was barely six months old, he wouldn’t remember any of it, but Mikey and Meme had been so close. I didn’t want to upset Mikey. But the hospice was lovely, serene, and calm. The doctors, nurses, and staff assured me that children were more than welcome.
So later that same evening, everyone came, along with dinner, which we all ate together in the beautiful lunch room. We explained to Mikey that Meme was sick, in a deep sleep, and that we were taking care of her. I remember him asking if Meme was going to get better. I said something to the effect that the doctors were here to help Meme, we loved her very much, and she would always be with us.
I stayed by Meme’s side night and day until I was exhausted; my family finally persuaded me that running myself into the ground wouldn’t do me or Meme any good. Coming to visit Meme at the doctor house became a daily routine. The hospice was stocked with puzzles, games, books, and music and kiddie videos. Other children came to visit their loved ones, and Mikey happily played with them.
A week to the day we brought Meme, we again rushed to the facility. The staff had alerted us that Meme had had a bad night. We knew the end was near. We stayed with Meme, held her hand, brushed her hair, and played her favorite golden oldie songs by The Blues Brothers and Creedence Clearwater Revival. Mikey danced and sang. It was a gorgeous day, a bit on the brisk side; we took Mikey out to the hospice courtyard, had a picnic lunch, and played hide and seek among the trees and bushes. Before we left, I kissed Meme and whispered that we would all be back tomorrow, but that we wouldn’t be angry if she decided that it was time. Her parents and my brother were waiting for her. Mikey waved good-bye.
Later that evening, we got “the call.” As much as we grieved, it was also a relief, not for us, but for Meme. Her suffering was over. The staff had told us that sometimes, as much as families want to be present when their loved ones pass, sometimes they hold off until they’re alone. Even at the end, Meme did exactly what she wanted.
The next few days were a blur as we prepared for Meme’s “party.” We gathered together, played Meme’s favorite tunes, shared photos and memories, and served French pastries in her honor. Mikey wasn’t sad; he told me that Meme was still in the doctor house and that when she woke up, she would be better. He was right.
We turned Meme’s bedroom into a colorful playroom, painting the walls a bright yellow. It has a train set, a table so Mikey and Kevin can play, a kitchen set and lots of books. Mikey talks about Meme from time to time. He says that going to the doctor house was fun, but that Meme’s not there anymore. She’s with the sun or the moon and she’s better now. He misses her. We all do.
Meme. Photo courtesy PJ McIlvaine
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