My mother and father — when they really were going to a dance.
The day my mother got ready for the dance was a hard day in her dementia. She tried to dress in nicer clothes, but her fashion sense had gone awry and nothing really matched. Her lipstick looked garish. She perched on the arm of the wicker sofa, like a teenager would have, and kept glancing toward the driveway.
Occasionally, she would go out the sliding door and walk to the end of the driveway to peer down the road. Then she would come back to the house and wait.
It was a hot summer evening and I hoped she would grow tired of it or forget it or snap back to semi-normal.
“What are you doing, Mom?” I asked several times.
“I’m waiting to go to the dance,” she said, petulantly, with her chin at a teenager’s tilt. “They should be picking me up any time.”
“Who?” I asked.
“The others that are going.” These others never had names. These others never materialized.
Finally I offered to give her a ride. She gratefully accepted, not seeing the absurdity of her adult daughter giving her a ride to a high school dance. We drove into town and around the empty parking lot of the high school.
“See? There’s no one here, Mom,” I told her.
She just looked at the building with a blank expression.
So I drove around some more and finally ended up at my go-to for such situations — the local garden nursery. We got out of the car and walked around the greenhouse, admiring plants and forgetting dances.
My heart ached after that adventure.
A is for aging.
And Alzheimer’s.
And ache.
Not the ache that comes from working out. As an on-again/off-again fitness person, I know too well the ache of walking down the stairs the morning after doing squats and lunges for the first time in two years.
Not the ache the comes from putting off an appointment to the dentist.
Not the ache that comes from lack of sleep or forgetting your glasses or drinking too much wine the night before.
All these aches are temporary.
The ache of a caregiver is a heartache that has nothing to do with EKGs or echocardiograms.
It’s a soul ache because a loved one is vanishing, like a wisp of smoke that cannot be caught.
And when that loved one is finally gone, the ache remains, but it’s not getting stirred up anymore and aggravated by phantom dances.
It settles — like dust.
And we remember that we are dust, and to dust we shall return.
What is one of the scariest situations you have been in because of dementia?
Let’s face it — dementia can be a scary thing, for everyone involved. Every time I see another news story about someone with dementia wandering off, my stomach tightens. There, but for the grace of God, goes my mother.
My mom and my dad on an earlier trip
My father recently told me a scary story. Years ago, my parents traveled with a church group to Macedonia, to walk where Paul walked. They had booked the trip during the days of denial, but there was no denying my mother’s dementia when it came time to leave. I was worried sick.
That’s probably why my father didn’t tell me this story when they first got home from the trip. Back then, he told me how the other ladies on the trip all helped with Mom. “They were great,” he said. “They really looked out for her.”
He saved this story to tell me years later.
In his words, “When we were in Greece, I needed to go find an ATM to get some more cash, so I told Mom to stay in our hotel room. I explained that I needed to go out, but that I would be back. She said she understood, but when I got back, she was gone.”
She had, indeed, left the hotel room alone. In a foreign country. Wandering off. Fortunately, some people from the tour saw her and kept her safe until my father came back. It could have been quite disastrous. There, but for the grace of God…
My own personal scary situation with my mother took place at JFK.
I’m still not sure of the reasoning behind taking my parents to JFK as opposed to an upstate airport. Maybe, what with my blurry memory and all, it was for that same international trip, and the trip originated from JFK. I think, though, that it was a trip to Florida. We thought a direct flight to Florida would be so much easier than trying to make connections.
Whatever the reason, there we were at JFK — me and my parents. I pulled right up to the door, dropped them off, parked in the short-term parking, and ran over to the terminal to make sure everything went okay.
By the time I got there, they were already well-entrenched in the snaking line leading to the security checkpoint. I stood and watched as they inched forward. My father turned and waved at me. He got my mother to do the same.
Slowly, slowly, they worked their way to the stacks of trays, the conveyor belts, and the scanner.
I watched my parents each take off their shoes and put them in their respective trays. A TSA agent told my mother to remove her jacket, which she did, and that went into the tray too.
My father, moving much more slowly than my mother, was still untying his shoes.
My mother spryly moved her way through the line, putting more and more distance between herself and my father. I stood, helplessly, at a rope barrier watching.
A security guard stood near me. “Excuse me,” I said to him. “My mother has Alzheimer’s and she is getting separated from my father at the checkpoint.”
He glanced in the direction I pointed, shrugged, and said, “I can’t really do anything about that.”
Even as I spoke with him, I could see my mother pass through the checkpoint and grab her jacket and shoes. My father was still by the trays.
“I really need to get in there to help her,” I told the guard.
He shrugged again, unmoved. “I can’t do anything,” he repeated.
My mother had her shoes on as my father was walking through the metal detector. She was heading out of my sight down a corridor. “Please, sir,” I begged the guard.
“Next time ask for a pass to accompany them through the gate,” he said, but he refused to make eye contact with me. He stared resolutely ahead. I felt like I was talking to a wall.
My father made it through the checkpoint and I could see him sitting to put his shoes on. My mother was nowhere in sight. There was, quite literally, nothing I could do.
I watched him finish tying his shoes and slowly move down the same corridor where my mother had disappeared. I felt like I had swallowed a boulder. The security guard, impassive, had moved away from me and was talking with someone else.
My final hope was to call my father on his cell phone. Of course, he didn’t have it turned on.
I dejectedly turned to leave, but made one last appeal at a help desk. The woman was so nice, but, of course, couldn’t help me. She offered me the same advice as the guard — get a gate pass, but it had to be done with the ticketed passenger with me; I couldn’t do it after the fact.
Of course, when I left JFK that day, I got lost in Manhattan and cried.
My father and my mother found each other in the airport. It all turned out okay in the end.
Still. Scary is an understatement for those events.
Because of situations like this, few things have built my faith more than Alzheimer’s. The rope barrier at JFK might as well have been the gulf between Lazarus and the rich man. (see Luke 16:19-31) With no way to cross it, only helpless feelings welled up inside as I stood and watched.
Prayer is my main refuge.
I am not in the hell of the rich man, though some describe care-giving in such negative terms. No, I am stuck at a rope barrier, talking not to Abraham, or an impassive security guard, but to God Himself.
I’m watching my mother as she is carried into Abraham’s bosom.
What was the first indication you had that something was not right? Was it a peculiar behavior or a specific incident?
My mother always knew six ways to anywhere. And the rest stops along the way. And the quality of the bathrooms at the rest areas.
This was in the days before GPS. We used old-fashioned paper accordion-folded maps. Not that my mother needed them. It was all in her head. For longer trips, she would order AAA TripTiks, but I think were more for us than for her. We could learn the names of the roads and where the rest stops were by using them. Her mind, however, was a veritable road atlas.
That’s why when she got lost, it stuck out.
Of course there had been little signs, little things she forgot or repeated. When I do that now, I’m just sure that it’s the first sign of Alzheimer’s. I think we all have those fears.
But my mother getting lost? That was almost unheard of.
We were in Myrtle Beach — my mom and dad, my sister and her husband, and my family. We were all in Myrtle Beach at the time-share condo that my father had been snookered into purchased.
The area was very familiar because we had been going to the same place for a number of years. Mom decided to make a quick trip to the Post Office to mail out the postcards she had written. Helen, probably 10 or 11 at the time, went along for the ride.
I should add here, that if any of my children have inherited my mother’s internal atlas, it’s Helen. Even at that age, she knew her way around and remembered roads better than I ever will.
So off they went to the Post Office while we hung around the pool.
They were gone for a very long time.
You know how it is. At first, no one thinks anything of it. Oh,they’re gone to the Post Office.
Then, someone asks where they are. They went to the Post Office a while ago.
A little later, someone asks when exactly did they leave for the Post Office.
You start wondering, how long have they been gone?
Then the misgivings begin, and a thousand scenarios, most of them bad, start playing in your mind.
It was well over an hour, maybe a lot longer, before the car pulled back into the parking lot. Helen’s eyes were big. She pulled us aside and she said, “Grammie got lost.”
The Post Office, only about a mile away, was elusive for my mother that day. It was so unheard of.
My sister and I whispered about it. Something wasn’t right. All the other little things suddenly took on new significance. Maybe there was something more going on.
As it turns out, that something more was Alzheimer’s.
I am the world’s biggest fan of quiet, well, one of them anyway. I love quiet and all the sounds of quiet.
It’s quiet in my home right now. I hear the fan from my computer and a few birds singing outside. Mary is in the kitchen pouring a bowl of cereal. It’s quiet.
My father ate a meal at the Manor with my mother the other day. He commented on how quiet it was.
“It was a lovely meal,” he said, “but nobody spoke at all during it.”
“Well, Dad,” I reminded, “they may be hard of hearing or have dementia issues.”
“There may be all sorts of reasons for it,” he agreed, “but it doesn’t change the fact that there was no conversation. It just seemed kind of strange.”
I tried to picture a table full of elderly people, focusing on their food and eating in silence.
Our dinner table is never silent. In fact, it can be a rather raucous affair.
As I thought about the quiet of eating, I remember sitting on our side porch years ago next to a box with Monarch caterpillars and milk weed. We used to tromp through the field and find dozens of the caterpillars, hiding on the bottom sides of leaves. We would gather as many as we could find and bring them home to watch the miracle.
A supply of fresh milkweed would keep them busy for days. If I sat next to the box in the quiet of the day, I could hear the small sounds of caterpillars munching.
Karl drew this caterpillar for me for Mother’s Day
munch…munch…munch
nom…nom…nom
squitch…squitch…crunch
When they had filled their full of milkweed, one by one they found their own private spot and hung upside down. Magically, they chrysalized into beautiful green and gold jewel boxes.
They hung in silence. No more sounds of eating. If they weren’t so beautiful, they would be easy to forget.
Then one day they turned black, and it seemed that hope was gone, but for the slight movement. A twitch here and there. I would wonder if I was seeing things. Slowly, the blackened jewel box would open to reveal a new creature with wet crumpled wings.
The Monarch miracle was one I never tired of witnessing.
It all began with quiet eating. Strength for the journey.
Is that what is happening at the Manor? The quiet eating, the gradual withdrawal into a private world, and then, when hope seems gone, the emergence into a new world.
I think there is a great, unimaginable beauty in shedding this earthly skin for wings.
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Hot Dogs and Marmalade 