March has always been my mother’s month. Her birthday was March 20. The daffodils bloom, her favorite flowers.
This March is also the one-year anniversary of “the move,” when my siblings and I, with lots of help from my sister’s family, moved our 86-year-old mother into a group home for seniors with dementia.
Reflecting on the move, I still feel that it was the hardest thing I’ve ever done.
“How so?” my sister asked when I had told her as we were discussing the anniversary of the move. For her, who’d been Mom’s primary caregiver, the hardest part had happened earlier, in November, and particularly in December 2022, when Mom suddenly could not stand being alone in her apartment anymore.
Up until then Mom, despite her relentlessly advancing dementia, had been content being by herself for large swaths of the day. Mom lived a short walk away from my sister in a neat apartment block for senior citizens in the village of Pfeffenhausen, about an hour north of Munich, Germany, where my sister has lived since 2002. Every day my sister or someone from her family would stop by with a meal, making sure Mom ate. They’d keep her company for a bit, tidy up and do her laundry, and take her along on shopping trips, hair appointments and other outings. On weekends, my brother often drove the two hours from Salzburg, where he lives, to stay with Mom and give my sister a break.
Mainly though, Mom had been content alone. She would putter around her place, sorting and resorting her belongings. She’d do her beloved puzzles, wash dishes without soap, reread books for the umpteenth time, play the piano, and sit in her rocking chair by the window, all the while listening to the radio, perpetually set to a station that played music from the ‘80s and ‘90s.
In November 2022, however, this manageable situation collapsed. Mom suddenly became anxious. As soon as the nursing service my sister had engaged to assist Mom in the mornings had left around 9 a.m., Mom would start calling my sister’s house incessantly.
“What am I supposed to be doing now?”
“When is someone coming to be with me?”
“I’m not feeling good, when are you coming?”
“So what are we doing today?”
We came to call this the phone terror.
“You’re on phone duty,” my sister advised the morning after I had arrived from Chicago end of February to help with the impending move. This put me in charge of answering the phone whenever the special ring tone she’d assigned to Mom’s calls hollered in the hallway. With me babysitting Mom, my sister was free to deal with all the stuff that needed to get done for the move to happen on March 1. Over many hour-long WhatsApp calls, my siblings and I had decided Mom had to be moved, and that a newly founded group home nearby was the best option.
Before heading off to school, my nephew had prepared me what to expect on phone duty.
“‘I think I’m dying,’ she’ll tell me,” he said. “But then I tell her, ‘Gammy,’ you’re not dying yet. I don’t have time now.’”
Heavy stuff for a teenager to deal with, but also wickedly funny.
Thankfully on my shifts I did not have to deal with the dying bit, but I did have to answer the phone every minute or two.
“Nobody’s come to see me. When are you coming?”
Jet-lagged that first morning, I at least wanted to have breakfast before heading down to Mom’s. Honestly, I also wanted to keep the time I’d have to entertain her to a manageable interval. One hour of doing nothing was easier than three, and we had to make it till lunchtime.
So I answered, “I’ll be there in half an hour, Mom. Have you had something to drink?”
“I don’t know.”
“OK, go to the fridge and get some juice, and drink that. I’ll be there soon.”
My sister had advised me that sometimes the nursing service did not stop by (without telling her). Thus Mom might not have had anything to drink or eat, and the resulting low blood sugar did not help her state of mind.
With each call, Mom’s voice got increasingly anxious.
“When are you coming?”
“So who is coming?”
“I don’t know what to do.”
Mom had no sense of time anymore, so it really didn’t matter what one said in that regard. It just mattered that someone answered, that someone was there. It probably helped that my voice sounded like my sister’s. Mom didn’t necessarily remember my name anymore (I had last seen her the previous November) but she retained a good sense of who belonged in her inner circle, and she readily accepted help.
When I arrived at Mom’s later that morning, I found her jittery. Thankfully, I had my sister’s instructions. I forced Mom to sit down in her rocking chair, prepped a cereal and juice for her, and basically sat with her, insisting she down the food and drink the juice before we would head to my sister’s.
“When are we going to Christine’s?” Mom asked in between sips of orange juice.
“At 12:30,” I said, calculating that it would take us a good twenty minutes to shuffle up to my sister’s house. This would have us arriving in time for lunch, the hot meal of the day in Germany, which my sister served around 1pm when my nephew was due home from school.
In the intervening 90 minutes or so, I had to keep Mom halfway happy at home. She sat in her rocking chair, slowly eating the cereal. I sat next to her, sipping an instant coffee. Both of us were eyeing the wall clock, whose arms advanced way too slowly.
How to kill the time?
I put My Fair Lady on the record player, which she couldn’t operate on her own anymore. Usually, hearing her favorite music calmed her down. But at this stage of her life, I came to realize, nothing was a sure thing anymore. Fortunately, it kind of worked this time. We hummed along to the familiar songs. She rocked back and forth. Eventually, the juice and cereal worked their magic. Her blood sugar must have risen, and she calmed down.
Mom was still amazingly mobile at that time, and so at 12:30 we walked, like we had done all the years she’d lived in Pfeffenhausen, up to my sister’s house. This involved a steep hill, which we managed just fine, Mom holding my hand. A bench awaits at the top of that hill, at the base of my sister’s yard. We rested there from the climb. That took care of another five minutes. Then we rounded the path to my sister’s door, arriving in time for lunch.
We had successfully killed the morning.
I deposited Mom in the dining room, where my nephew was setting the table, and headed to the bathroom.
When I returned, my nephew took me aside. “Gammy immediately got up and was looking for you, following you to the bathroom. I could barely keep her in here. She’s latched on to you!” he smirked.
And that’s how it was. I was Mom’s person of the day, her crutch to cling to as she had lost her place in the world. On the one hand I was glad that Mom was flexible enough to latch on to me, giving everyone else a break. But it also meant the day would grind on. How to kill another eight to nine hours until bedtime?
For those two weeks that I helped take care of Mom and facilitate the move, this inversion of time depressed me to no end. For me, time is a precious commodity. I never have enough of it, and free time is the greatest gift.
Now time had become the enemy.
How to occupy a demented person all day long? Days loomed eternally long, and tasks Mom could still do were terribly short-lived. She wanted to contribute, wanted to be busy, yet almost every household task confused her. When I had her set the table one day, she lined up all the cutlery beside a row of plates.
“Mom can still iron,” my sister advised. So one afternoon, when I was again Mom’s person of the day, I set up the ironing board in my sister’s living room next to the sewing machine where I was affixing name labels to Mom’s clothes, bed linens and towels as was required by the group home. I had put aside a pile of laundry that needed ironing but I had to hand Mom each piece. Ironing pillow cases and duvet covers went way too fast, I discovered. I rejoiced when ironing one of my nephew’s denim shirts provided Mom with a greater challenge. It took a good ten minutes, during which I could sew on two labels.
After the ironing episode and a coffee and cake interlude (thankfully Mom still enjoyed eating), I resorted to watching TV with her. I had run out of ideas of how to occupy her. Supper and bedtime were still far away. I beseeched my nephew (who was enjoying his time off from being person of the day) to put on my favorite German detective series and installed Mom in an armchair opposite the big screen TV.
As an episode of Hubert und Staller began, Mom leaned over to me and said, “Thank you for letting me be here, for letting me watch with you.”
I nearly burst into tears. Mom had never been a big TV watcher and certainly never watched detective series. But no matter. Watching the comedic Hubert und Staller was a nice distraction, and it covered 45 minutes.
Even after we had moved Mom into the group home, time remained the enemy.
That feeling was augmented by the other residents who also had nothing to do and limited abilities. The caregivers were mostly at a loss. They had just begun their jobs and were as yet inexperienced with everyone’s preferences and the different ways dementia manifested in the residents. Some residents lived entirely in the past, some, like Mom, entirely in the present. Some liked to play board games, others couldn’t follow them. Some knew how to cut their food, others didn’t.
On one of the days before the move, when we were driving to the group home with Mom to get her acclimated, Mom had to go to the bathroom halfway there. My sister, well-versed in driving with Mom, knew exactly where to find a public restroom at the city hall of one of the towns we passed through. I sat alone in the car while my sister accompanied Mom. Elton John’s Circle of Life was playing on the radio. As I gazed out the car window, watching passersby go about their business, tears welled up, and I thought:
This world is not made for people without a brain.
Outside the car window was the city hall’s wheel-chair accessible entrance. I regularly read Hanif Kureishi’s dispatches from his new life as a quadriplegic. Without functioning limbs, he demonstrated, you can still have agency over your life. As long as you have your brain, you have agency.
But when your brain stops working, you cannot find your way in this world. Mom’s dementia had been a long good-bye that began in her mid-seventies.
Sitting in the car, the tragedy of her situation hit me full force. Mom had lost her place in this world. She basically needed another human to latch onto, to show her the way 24/7. No other human could provide that. A group of humans was needed, and even that would not alleviate her need every second of the day and night. It was a tragedy we could not fix. We could only alleviate it temporarily.
When I arrived on the last day I spent with Mom before I left again for my life in the States, she was relieved that I had “found” her, something she would say to my brother, sister, brother-in-law, nephews, and niece every time one of them visited.
She pulled me into her room.
“I don’t want to stay here. Why can’t I live with you? All I need is a bed,” she implored me.
You need way more than a bed, I thought, but I knew I could not argue with her about that.
“I live far away in Chicago,” I said, “I don’t think that would be the right place for you.” Chicago was a concept that still made some sense to her. She had always associated me with that.
We stood in her room, she hanging her head and leaning into me. I held her, while she proceeded through a litany of relatives she could stay with, and I explained why she couldn’t. She even dug into the recesses of her memory to ask me about her relatives in the States (Mom was American.). Who was still alive? Couldn’t she stay with them?
Finally I managed to get her into the rocking chair, now situated by the window of her new room. I put on one of her old records, but to no avail. She kept fidgeting. I sat down in the chair next to her, holding her hand.
“I think I want to kill myself,” she said. “Do you understand that?”
As a matter of fact I did. So I said, “Yes, I do, but that’s not an option right now. Now we have to make the best of the situation, and this is a good place for you.”
That statement was already too long for her to comprehend. She looked at me with the blank look she always had when she was confused and started up again, “I want to kill myself.”
My mind was at ease in that regard as I knew she had no idea how to go about killing herself. Still, we had hit the rock bottom of human existence with this exchange.
Before the move, I had been enormously afraid how Mom would react when we actually moved her. I’d like awake at night, catastrophizing about how Mom might behave, whether she’d put up a fuss, flat out refuse to be moved, throw a tantrum (even though she wasn’t one to throw tantrums), etc.
Instead, moving day had gone smoothly, with me chaperoning Mom while my sister and my niece carried the rocking chair and plants out of Mom’s apartment. All three of us drove in peace to the group home. Once there, Mom did cling to my sister, repeatedly stating she wasn’t sure she could do this, while my niece and I set up her new room, where the men of the family had already installed the new closet and side board. But there had been no meltdown.
Now, here was the situation I’d feared, in a much different form that I had imagined.
How to get her out of this dark mood? I indulged it for a while, trusting my gut that it was ok to give some room to her desperation. It was ok to simply hear her, and to be there for her, emotionally, and not just mechanically. Not just dumping out the urine I had found in a vase sitting on the bathroom radiator when she obviously had not located the toilet or had not known how to operate it.
But holding her hand and sitting with her in the despair.
Later, I decided to go for a walk with her, even though it was blustery outside and dusk was approaching. It was something to do and a change of scene. You had to get dressed and you had to make your way, putting one foot in front of the other. You could talk about the weather or what you came across.
Movement and fresh air might help lift her spirits. They did, as we then had a fairly harmless evening of slow-motion eating, mindless TV watching, and getting her ready for bed. I was even able to say goodbye without handing her over to a caregiver. Instead, she stood in her door, in her pajamas, looking ancient and wizened without her dentures, and waved good-bye to me.
This was the last time I saw my mom when she was still conscious, when she was still herself. But I did not know that then.
As I drove back to my sister’s, hurtling down the autobahn with Elton John’s Circle of Life on repeat, I asked myself, again and again, how we were to live with this despair, and I cried about those who, as in the lyrics, “fall by the wayside.”
All we could do was help Mom have some good moments.
On one of my previous long visits to the group home, Mom and I had sat at the table in the communal dining room, doing a “dementia-appropriate” puzzle together. I knew from my sister’s tales that images did not necessarily make sense to Mom anymore, but shapes did. While I laid the puzzle’s border, I pushed puzzle pieces, whose place was already clear to me, her way.
Mom was engaged. She fingered each piece, jiggling it around in this or that open puzzle spot, eventually maneuvering it into the right place. After fitting a particularly stubborn piece, she smiled at me as I was sliding another piece towards her, and said, “Ah! Teamwork!”
That was one of those joyous moments.
Wow, my heart lurches as I read this beautiful piece while working to help my 92-year old mother "age in place." Your words provide a sense of anticipatory guidance that lets me know I am not alone as I struggle to feel the need to know what and how this will happen, while knowing at the same time that I cannot know. Thank you.
Thanks for sharing such a deeply personal story. It rings true for me and so many others struggling with the grief of losing their parents physically, emotionally, and cognitively. It is so painful and you beautifully described the feelings of helplessness and hopelessness we feel when parenting our parents.