If You Say So

The following is an edited version of a post first published on January 2, 2012. I wrote it when my mother was still living at home and I was trying to help my father with her.

My sister and I can carry on conversations using just things my mother says.

For instance, my mother often says, “If you say so.”

Making the sandwich #1This is usually in response to something she doesn’t believe to be true.  Like, she’ll be preparing a meal for, say, 150 people.  (150 is her favorite number.)  I’ll say to her, “Mom, there are only going to be five of us for lunch today — You, me, Dad, Mary and Laurel.”

She’ll look at me with a look that says, I don’t believe a word of that.  But out of her mouth will come the words, “If you say so.”

It’s a phony acquiescence.  She’ll continue right on making 150 sandwiches.

Or, she’ll be getting ready for church, and I’ll say, “Mom, today is Tuesday.  There’s nothing going on at the church today.”

She’ll answer, “If you say so,” and then continue getting ready for church.

She started saying it as a cover for her memory loss.  It was easier than arguing.

The reason I wanted to start off the new year with those words, though, is because they tie in so beautifully with something else I’ve been thinking about.  I’ve been thinking about how the earthly life of Christ was book-ended with two statements of yielding.

First, when the angel told Mary she was going to have a baby, she responded with,

Behold, I am the servant of the Lord; let it be to me according to your word.

Luke 1:38

I’m quite sure there must be a translation out there that translates her words as, “If you say so,” not in an I-really-don’t-believe-a-word-of-it way, but in the way I would like to be able to say them to God. A yielding.

When Jesus was praying in Gethsemane before his death, he said these words,

Father, if You are willing, remove this cup from me.  Nevertheless, not my will, but Yours, be done.

Luke 22:42

Can’t you just hear the “if you say so” in there?

“Father, take this cup away from me, but, if you say so, I’ll do it.”

When God asks me to go through something, I’d like to be able to say, “Okay, God, if You say so.”

I want 2012 (and now 2017) to be an “If You Say So” kind of year, a year of yielding to the Father’s will.  I want to be like Mary and Jesus,  who, facing trials and uncertainty, still trust God’s overarching plan.

However, I want to be sincere in my words — not like my mother  just saying words to smooth things over.

If you say so.

Simple words from a person with Alzheimer’s.

Words also to live by.

X

Χ 

marks the spot.

My mother would sometimes say, “That hits the spot.”

Hot soup on a cold day. Ice cold lemonade on a hot day. Lasagne with garlic bread and a fresh tossed salad on any day.

I’m pretty sure it’s the same spot.

The one marked by “X”.

The one identifying the location of the treasure, which, as it turns out, may be food.

Contentedness as seen in the perfect food for the day became more common with my mother’s Alzheimer’s.

Or maybe she was just more verbal about it.

So many things were confusing to her. The place. The year. The people around her.

Food, however, was and is universal.

And can be deeply satisfying.

Especially when it’s just what your body is craving.

Hence, the marmalade.

Bread and JamThe way my mother ate orange marmalade reminded me of Russell Hoban’s Francis in Bread and Jam for Francis.

“Well,” said Frances,
there are many different things to eat,
and they taste many different ways.
But when I have bread and jam,
I always know what I’m getting and I’m always pleased.”

When the world is crazy, go with the sure thing — marmalade.

It will hit the spot.

 

Ache

My mother and father -- when they really were going to a dance.

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.

 

The Teakwood

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"?

1989 — picture by the Teakwood sign — see the bottom of the “D”?

The slide into the pool at the Teakwood

The slide into the pool at the Teakwood

Wandering from room to room at the Teakwood

Wandering 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.

Scary Travels with Alzheimer’s

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 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.

It is a slow, sometimes scary, good-bye.

Six Ways to Anywhere

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.

IMG_3013[1]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.

My Inner Porcupine

One of the most precious lessons I have learned (and am still learning) from my mother’s Alzheimer’s is not to take things personally.  I have such a tendency to do that!  When people say or do little things, and sometimes big things, that are mean or hurtful, I dwell on them.  With my mother, when she scolds or is angry, I just tell myself that it’s her illness talking.

The other day, I found myself doing it again — focusing on someone’s hurtful words and actions.  The thing is, other people may not have an Alzheimer’s problem, but they have a human problem.  We are all so painfully human.  Just as I excuse  my mother with her Alzheimer’s, I need to excuse others because they are just people.

Grace, grace, grace — so abundantly given to me, I should be able to share it.

There’s a porcupine within me
That bristles up at certain things
And I cannot quite control it
Or the turmoil that it brings.

When frightened, angry, hurt,
The little spears come into play,
And they prickle and they stab –
They make people move away.

Sometimes life is lonely,
With this porcupine inside.
Sometimes I don’t like me,
And I want to run and hide.

Why can’t I have a bunny
Hiding inside me?
With long soft ears and fluffy tail,
Huggable as can be.

Why can’t I have a puppy
Hiding there instead?
With wiggles, fun and energy –
A thing no one would dread.

But no, I have a porcupine
That I must learn to keep,
And the lessons that he teaches me
Are hard and sometimes deep.

But the lessons that I learn,
Painful though they be,
Help me to grow in grace, grace, grace –
And become a better me.