John 5 begins with the story of Jesus at the Bethesda pool where lay “a multitude of invalids.” The belief was that after an angel troubled the waters, the first one in was healed. Jesus spoke with a man who had been there for thirty-eight years.
“Do you want to be healed?” Jesus asked him.
“Sir, I have no one,” the man replied. No one to put him into the pool when the water is stirred. A multitude of invalids, but each concerned for himself.
My father and mother enjoyed traveling after my father retired, but as my mother’s dementia grew worse, traveling became more difficult. One night in New York City, my father awoke to hear the heavy hotel door click shut and realized that my mother was no longer in the room. He found her in the hallway. Another time she got away from him at the airport, and still another time she wandered off in Greece.
On that trip to Greece, their last big trip, the other ladies in the tour group saw the need and began watching out for my mother. What began as a group of strangers ended as a caring group.
My mother and father on their trip to GreeceStrangers at the start, friends by the end
“Without a sense of caring, there can be no sense of community.” Anthony J. D’Angelo
Community doesn’t have to be intimate to be functional. Even a small thing, like holding the door open for someone struggling with mobility, can be an act of community. It says, “I am willing to help you, even if it inconveniences me a little.”
Sometimes community is very intimate. I was horrified to see that my mother had had an incidence with incontinence while visiting an old friend of my father. “Oh! I’m so sorry!” I had said when my mother stood to go. “Let me get something to clean that!”
“No, no,” the woman had said. “Your job is to take care of your parents. I can clean this up.”
Community.
Looking out for one another.
Circling the wagons in Greece, in Florida, in Cooperstown.
We can be community to those we encounter. We just need to be willing.
My father and I went to dinner at the Council Rock Brewery last night for their Friday night fish fry. If you should ever be so fortunate as to spend a Friday night in Cooperstown, by all means, go to Council Rock for dinner and a beer.
Chardonnay (for me) and beer (for my dad)
The what’s-on-tap list was long and my father hadn’t looked at it before the waiter came to take our order.
“I’d like a beer,” my father said.
“Would you like a dark ale or something lighter?” the waiter asked, his pen poised over his pad.
“Yes, that sounds great,” said my dad.
One of my father’s hearing aids isn’t working right now.
The waiter looked at me, unsure what to do next so I pushed the list over to my father and repeated the question.
“He wants to know which of these beers you want,” I shouted so he could hear me above the pub hubbub.
The waiter bent over the table and put his finger at the bottom of the beer list. “These ones are dark,” he said, “and they get lighter as you go up.”
My father furrowed his brow as he studied the list. He finally pointed to the second beer from the top. “I’ll try this one,” he said.
When it was served, my father said, “That’s the right color.” He took a sip and pronounced it good.
I was glad he was happy with what he had ordered.
When my mother was early in her Alzheimer’s, I remember going to restaurants with her. She wasn’t hard of hearing, but she did struggle to order. She studied the menu, chose something, announced her choice to us, but then would have forgotten it by the time the server was taking her order.
Sometimes she ordered what the person before her had ordered.
Sometimes my father or I ordered for her or prompted her with what she had intended to order.
Drinks were a different story. When ordering drinks, she usually declined — which was fine. But when the server brought out drinks for people and brought nothing to her, she grew indignant.
“Where’s mine?” she would demand.
The flustered server would apologize and ask again what she would like.
We would offer our drinks to her.
Anything to make her happy.
Because the maxim, “If Mama ain’t happy, ain’t nobody happy” is still true when Mama has dementia and is at a restaurant.
At the neurologist’s office one day, after a failed clock assessment, a sign of dementia, I asked the doctor, “What can I do? How can I help?”
He said, “Be patient. Be understanding. Be kind.”
We all need to live by those B’s, even without the presence of aging or hearing loss or fogged thinking.
So B is for beer.
And benevolence.
And the above-listed B’s.
Not just in restaurants, but everywhere — at home, in the store, at church, on the road, in political discourse.
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.
Where did you spend your happiest memories with your loved one? Before all this, of course, were there special places you lived or traveled to that you can look back on and feel good about?
I forget how the topic came up. The way my parents used to tell the story, we were all begging to go to Myrtle Beach, because everyone else was, which just sounds wrong, because our family was never particularly susceptible to peer pressure. The way the story goes, though, is that we were all begging to go to Myrtle Beach so my father told us to pick out a place to stay and show it to him.
This was all back in the dark ages, before the internet. With a AAA membership, we were able to obtain a two-inch thick tourbook for the South Carolina. There was pages and pages of motels and hotels on the Grand Strand. Those little listing were hard to decipher, so my father suggested writing to the Chamber of Commerce in Myrtle Beach. I wrote the letter, and then had the thrill of receiving a whole bunch of mail. (Parents, if your children ever ask why they don’t get any mail, suggest they write to a chamber of commerce somewhere.)
With the stacks and stacks of brochures that arrived, we began culling through and narrowing down the search. I wanted a swimming pool. And small. Even then, I wanted someplace small and homey. Twelve stories simply doesn’t appeal to me, even if the rooms could face the ocean. Small, homey, swimming pool — yes, those were the criteria.
I found the perfect motel. It was called The Caravelle. It wasn’t huge. It had a swimming pool. It was right on the beach. Perfect.
Except they had no vacanices for the week we wanted to go.
So I went back to the pile of brochures and found our second choice. Small, homey, evening bridge games in the lounge (something I thought my parents would enjoy), a swimming pool, and a vacancy. We went to Teakwood Motel that year. And every year after that for about thirty years.
We patronized The Teakwood through several different owners and watched its decline. The last year we went the roof was covered with blue tarps and one of my children found an insulin needle under the bed. Now a parking lot for a high-rise hotel has replaced that motel.
In its heyday, though, The Teakwood was like family. We saw the same guests year after year. We knew the owners well, and one owner actually became family, in an extended sort of way.
There are so many, many memories of The Teakwood — an annual picture by The Teakwood sign, a bagpiper practicing in the Teaky Forest, cookouts, swimming in that pool, sliding down the slide into the pool (until they removed it for insurance reasons), kids freely going from room to room as we often booked four or more rooms in a row, crossing Ocean Boulevard to get to the ocean.
1989 — picture by the Teakwood sign — see the bottom of the “D”?The slide into the pool at the TeakwoodWandering from room to room at the Teakwood
The Caravelle is still in operation today. I would drive past it whenever we went to Myrtle Beach, just down the road from The Teakwood.
I’m thankful that the Caravelle was full in 1972.
Would my mother have gotten lost trying to find the post office from The Teakwood. (see Six Ways to Anywhere)? Probably not that year. That would have happened further down the Alzheimer’s road; The Teakwood was like a second home.
If there’s a special place for us, it’s a little mom-and-pop motel in Myrtle Beach called The Teakwood that has now gone to motel heaven.
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.
When Maggie can’t find her fish, she carries a different toy.
“You’re the lady with the dog,” a woman said to me at church the other day.
“The dog with the fish?” I responded, half-questioning, half completing her sentence.
“That’s right,” she said excitedly.
Our dog is famous around Greene. She carries a toy, usually a fish, with her on walks. At Christmas, she carries a Santa.
And now I’m known as the lady with the dog with the fish. All my life I’ve been identified by others — Dr. Pollock’s daughter, Bud’s wife, Philip’s (or Owen’s or Sam’s or Helen’s or Jacob’s or Karl’s or Mary’s or Laurel’s) mother. It’s really okay — I kind of like being in the background.
The outdoor high ropes course at the Clark Sports Center in Cooperstown.
Yesterday, Mary did an outdoor high ropes course. She said, “There were two rules. The first was that you couldn’t call anyone ‘Hey, you’ so we had to learn everyone’s names. If we couldn’t remember their name, we were supposed to ask them to tell us again because it’s disrespectful not to try to learn someone’s name.”
“What was the second rule?” I asked.
“I don’t remember,” she said.
When we visited my mother at the Manor, she was still in bed. It was 11 AM.
“She’s being a stinker,” the nurse told us.
“Hi, Mom,” I said as I entered her room.
She turned and looked at me. “Oh, hi,” she said.
“Are you going to get up today?” I asked.
“Not yet,” she replied.
“Do you know who I am?” I asked.
“Yes, I know who you are.” She smiled at me.
“Okay, then,” I challenged, “who am I?”
“You’re Sally.”
What a sweet little pleasure to realize that she still knows my name!
She knows my name. I’m not the lady with the dog, or the one with a bunch of kids. She knows my name.
Lest you think I am picking on my mother later in the post, let me start by listing for you just a few of the things on my desk right now that I can see with moving anything.
a pack of gum
a golf ball
headphones
a highlighter pen
two pairs of scissors
“Amistad” DVD
a Webkinz code
a Staples easy-rebate receipt
my cup of coffee
a letter Mary wrote to her Compassion child
Christmas labels
an empty CD case
an SD card
a silk Gerber daisy
folders filled with papers
two 3-ring binders
my laptop
much, much more!
Why should I ever buy an “I Spy” book or an “I Spy” game when I have a desk that looks like this? Can you find all the things I listed?
Yesterday, when I was at my parents’ house, I went in the laundry room to see if anything needed to be washed. The bin above the washer caught my eye. Usually, this was where cleaning rags were kept, but lately other things have been showing up there. The kitchen towels, which used to be kept in a drawer, are almost always in this bin these days. But yesterday, there was even more.
I started taking things out, just to see what all was there. Here is what I found:
rags (expected)
bags – plastic bags from the grocery store and used zip-loc bags (sort of expected, but I have to ask, does anybody else’s mother wash zip-loc bags? Mine has for years.)
several ShamWows (purchased at the state fair after my parents were wowed by that demonstration. Have they ever used them? I don’t know…)
dish towels (expected these days)
paper placemats (spilled upon in several places, but once quite pretty. I threw them away.)
styrofoam cups (Where did these come from? Why are they here?)
a pretty bowl (This does not belong to my parents. Somebody brought them food in it. Usually it is sitting on the counter with the rest of the dishes that don’t belong to them.)
Bounce fabric softener sheets (sort of expected. At least it’s in the laundry room.)
loose kleenex (these are everywhere in the house. Fortunately, they did not go into the washer or dryer. From my experience, kleenex does not wash well.)
a stretched out glove (this would not fit anybody that I know. I threw it away.)
pieces of a broken plate in a plastic bowl (less than half of a stoneware plate, so I threw it away. Even if we had the whole plate, would we have glued it back together? I don’t think so.)
As I was taking all these things out and shaking my head over them, I thought about my desk at home. Any sane, normal person could start pulling things off my desk and saying, “Where did this come from? Why is this here?”
I think the difference is — and this is an important distinction for those of us who wonder if the same thing is happening to us — that this is a fairly new behavior for my mother. When I was in 3rd grade my desk was such a disaster that my teacher, Miss Bliss, dumped it out in the middle of class to my horror and embarrassment. It made an impression on me, but it didn’t fix the problem. My desk in college was cluttered, and my desks in my homes have been cluttered.
And the really weird thing is, I usually know where things are. I know right where to find a paper clip on my desk because I watched the box spill. I just haven’t picked them all up yet. I know there is a check I have to give Bud to sign. It’s in the pile to my left, either underneath or on top of the two library books that don’t have to be returned for two weeks.
My mother has always washed and saved zip-loc bags. That doesn’t worry me. It’s the fact that she no longer puts them in the same place. It’s this new disorganization that concerns me and reminds me that she is no longer in full possession of her faculties. If the person who owns that pretty little blue bowl ever shows up looking for it, I wouldn’t know where to start looking. In the workshop? In the bathroom?
My mother no longer understands where things go. It makes life hard for my father.
Maybe if I get Alzheimer’s, I’ll get neater. My desk will be organized. My husband and children will scratch their heads in wonder because it will look tidy. But I won’t know where anything is.
A number of years ago, I was able to accompany my father on his trip to his hometown. He was meeting with his siblings and their spouses to inter my grandparents’ remains. My mother was planning to go with him, but got sick just before they were supposed to leave. I filled in for her.
I had no idea what a special trip that would turn out to be. We went to the cemetery and sat on a little knoll while my father and his brother and sister reminisced about their parents. They each shared memories of how their parents had made their house a home. They talked about my grandmother making elaborate Halloween costumes for them, her competitive side coming out, so that they could win the town’s contest. They talked about their cousins and their pets and their school and their growing up years. Then my uncle said something which I will never forget.
He said, “They were young once. They fell in love. They had dreams and passions just like we do.”
I don’t know why that was so profound, but it hit me squarely in the heart.
My grandparents were old the whole time I knew them. My grandmother had Alzheimer’s. She smoked and drank martinis. I have seen her wedding picture and she was once beautiful.
My grandfather had Guillain-Barre syndrome in the late 70’s or early 80’s, I think. (Perhaps one of my siblings has a better memory for these details.) It transformed him from the robust, fun Grampa that I loved to go see, to a weak man confined to a wheelchair. I have wonderful earlier memories of him throwing the Hollywood brick (it was made of foam) at us, and tricking us every time with it. In fact, I think we all (the grandchildren) wanted that brick when they were emptying out the apartment, but no one seems to know where it went.
Unfortunately, my mind doesn’t always go back to good memories. Why these memories? My grandfather weeping in a wheelchair when I came to visit when I was pregnant with Philip. My grandmother smoking and sniping.
“They were young once. They fell in love…” I chose, then and there, to replace my memories with happier ones.
Yesterday, I caught a little glimpse of that with my mother. We were sitting at the table, with a full plate of marmalade sandwiches. She had made ten or so before I got there — for the others. She looked up at a window ledge, and asked my father, “What’s in that vase?”
Now, you need to know that my mother has always a way with plants. Her home was filled with them. She had the most beautiful Christmas cactus I have ever seen. She would take little pieces of the Christmas cactus, stick them in a cup of water, wait for them to send out little roots and then move them to pots. She started so many plants that way. And the house is still littered with pieces of Christmas cactus stuck in water. That’s what was in the vase.
My father looked up at the milk-glass vase with the sad little piece of Christmas cactus drooping over the edge. “Well, that’s a genie in a bottle,” he said. “If you rub it, he’ll come out and grant your wish.”
My mother giggled like a schoolgirl. She looked at him and smiled.
When he left the room, she said, “I’m so lucky I found him.”
Oh, Mom, you have no idea.
“They were young once. They fell in love…” She was back to that point in her life. I want to remember her that way.
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This picture is from Christmas 1981. I chose it because it’s one of the few pictures I have of my grandparents. That’s them in the front row. I love the fact that my grandmother reached over and put her hand on my grandfather. They were in love still.
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Hot Dogs and Marmalade 