If You Say So

January 2, 2017January 2, 2017 Sally5 Comments

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 #1 This 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.

A to Z Blogging Challenge

X

April 28, 2016March 20, 2017 Sally7 Comments

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.

The 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.

A to Z Blogging Challenge

Ache

April 1, 2016March 20, 2017 Sally8 Comments

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.

A Month of Remembering

The Teakwood

January 22, 2014July 23, 2017 Sally3 Comments

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”?

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.

A Month of Remembering

Scary Travels with Alzheimer’s

January 14, 2014May 3, 2017 Sally2 Comments

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 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.

A Month of Remembering

Six Ways to Anywhere

January 2, 2014July 23, 2017 Sally3 Comments

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.

Alzheimer's · Faith

Knowing My Name

May 2, 2012February 25, 2022 Sally7 Comments

HPIM9979 — 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.

outdoor-high-ropes-2 — 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.

Alzheimer's · Faith

My Inner Porcupine

April 24, 2012August 13, 2018 Sally24 Comments

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.

Alzheimer's · dementia · family

Orange Ice Dessert

July 22, 2011July 29, 2017 Sally9 Comments

The other day I walked into the kitchen at lunch to find my mother sitting at the kitchen table with some hot dog buns, a jar of marmalade, a brick of cream cheese, and some leftover chili. She was making sandwiches.

The process was as follows:

Open the hot dog bun.
Spread a thin layer of cream cheese on it.
Add a thick layer of orange marmalade.
Spoon cold chili on top of the marmalade.
Close the bun.
Put it on a serving platter.
Repeat.

“What are you doing?” I asked. A dumb question, I know, but sometimes things just pop out of mouth when I’m astonished.

“Making lunch for the boys,” she replied, remaining steadily on task.

“Elinor, what are adding now?” my father asked. She was at the chili step.

She glared up at him. “I’m adding hamburger!” she fairly shouted. How dare he question her! “This is my hamburger and I want to add it!”

My father and I looked at each other and decided not to question this process any further. There were, after all, only four hot dog buns, so the sandwich factory was self-limiting. Just in case, however, I made sure other bread products were safely put away.

She sat down and ate two of her own sandwiches for lunch that day, but there were no other takers. My father made himself a bologna sandwich. He’s become quite self-sufficient in the kitchen.

My mother used to be a wonderful cook. I need to remind myself of that as I throw away the concoctions she now makes. However, the heat wave affecting many of us this week reminded me of my mother’s wonderful summertime dessert called Orange Ice Dessert. It is cool and refreshing. One of my brothers has a July birthday and this was what he usually had instead of a cake. Here is the recipe exactly how she had it written

Orange Ice Dessert

6 oranges (3 cups juice)

1 lemon (1/4 cup juice)

1 cup sugar

1/2 pint whipping cream

1/2 cup chopped pecans (or more if desired)

1/2 cup sugar

Mix orange juice, lemon juice and sugar well. Pour into a deep freezing pan (loaf type). Whip cream. Add sugar and pecans. Mix well. Spoon whipped cream mixture on top of juice mixture and freeze.

Additional comments: Wonderful make-ahead summer dessert — very refreshing.

My kids don’t like nuts, so we don’t put the nuts in. Or we make two pans, one with nuts and one without.

I may run out this morning and get some orange juice so I can make this. Then I can add a picture. And enjoy one of my favorite summertime treats.

Either that, or some hot dog buns and chili so I can try her other recipe. Or not.

Bon Appetit!

Alzheimer's · elderly · family

Disorganization

May 4, 2011February 2, 2017 Sally4 Comments

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.