A New Notepad

It became a theme. A legal pad with only a few pages written upon.

When I found the first few of these on his kitchen table, I laughed and commented to his friend, “I can’t believe he only uses a few pages on each pad.”

“Welcome to my world,” she said with a smile.

As we dug deeper and deeper into the apartment — my brothers, my sister, my father all helping — it became abundantly clear that we had had a minimal understanding of Stewart’s struggles. Layered in with the notepads was a paper trail that told such a sad, sad story.

I daresay that each of us wept, though not collectively. Individually. Privately. Alone. As my family is wont to do. Hearts breaking, not just with the loss of a family member, but with the pain that we uncovered.

While over the years I was busy looking down my nose and saying things like, “I don’t understand why Stewart doesn’t just (fill in the blank),” Stewart was hitting yet another pothole on the bumpy road of his life. And I had no clue. I truly didn’t understand.

“I found a notepad if anyone needs one,” one of my brothers would call out occasionally.

DSC00693
the tip of the iceberg

We would laugh. There was no dearth of notebooks. He had legal pads – yellow and white, composition books, loose leaf paper and three ring binders, ring bound notebooks, blank journals, and paper, just plain white paper.

As I put together a timeline for Stewart’s life — the hidden part that I didn’t know — I began to see a theme. An attempt to put old things behind and start new, followed by a problem, followed by yet another attempt to start new.

This plethora of notepads was a metaphor for his life. A clean notebook. A fresh start. Followed by something I couldn’t always see that made him want to start again.

At the beginning of the weekend, I had driven to the Pittsburgh airport to pick up my sister. On my way, I had passed a man standing along a busy road where there was stop-and-go traffic. He held a battered cardboard sign that read something like, “HOMELESS. VETERAN. PLEASE HELP.” I had watched through my rearview mirror as someone handed him money out the window of their car. My cold hard heart felt nothing for him.

At the end of the weekend, after driving my sister back to the airport, I saw him again. I had no loose change to give him, but I wanted to ask him, “Do you have a sister? Does she live in a little town in a two-story house with her family? Does she know about your gritty exhaust-filled life here by the road?”

Stewart had never reached that point of standing by the road. But I never knew all the struggles he did have.

I wanted to roll down my window and hand that homeless guy a notepad.

The Receiving Line

One by one they took my hand.

“I’m Sally, Stewart’s sister,” I would say.  Then they would tell me their name and how they knew Stewart.

From the food bank. “I volunteered with Stewart at the food bank. We could always count on him.”

From Habitat for Humanity. “Stewart took the minutes for our meetings. They were always precise and thorough.”

From the church in Tarentum. “Stewart had been our pastor.”

From the Presbytery. “Stewart served on a committee with me.”

From his apartment complex. “Stewart sat in the gazebo with us every night and we talked.”

From a coffee shop that had become his family. “We didn’t even know he was a pastor for the longest time.”

A young couple said, “Stewart performed our wedding.”Stewart 017

One man told me, “Stewart changed my life.”

A man named Buster stood in front of me, humble, awkward. He was as tongue-tied as I felt all day, his eyes watery as they looked at mine. “Stewart was a good man,” he finally said.

“Thank you,” I said, over and over and over.

I wished I had more words.

No, I wished they had more words. I loved hearing about the lives he had touched.

“Stewart drove me to the doctor.”

“Stewart drove me to the store.”

“Stewart loved that skate park.”

“Stewart listened.”

“Stewart helped.”

The two hour receiving line became almost unbearable. All these people. All these names. All these words — good words — but I couldn’t hear any more..

After the service, while people were still milling around and chatting, I sat by myself a short distance away. Maybe I seemed uncaring. I only knew that I was exhausted. Mary came to sit beside me and I hugged her.

This may sound crazy, but instead of a two hour receiving line, I wished for a two month one, where I could sit, one day at a time, with the people, share a cup of coffee with them, and really hear their story.

I have so many questions for them.

Did Stewart laugh a lot? I always liked his laugh.

Did Stewart cook for you? He was a pretty good cook.

Tell me everything you can about Stewart and his life here. Please.

I’m so hungry for more.

Ash Wednesday

It was an ominous way to begin Lent.

An early morning phone call let me know that my oldest brother, Stewart, had passed away from a heart attack.

And I stood in the kitchen, and I stared at the wall
And I prayed for some wisdom, so I could make a little sense of it all.
And I thought about the seasons, and how quickly they pass
Now there’s little to do but hope that the good ones will last…

Andrew Peterson, “Three Days Before Autumn”

I stood in the kitchen this morning, but I didn’t stare at the wall. I left the lights off and stood at the window, waiting for the sunrise.

Some sunrises are so spectacular with bursts of color lighting my horizon. I could have written, then, about how God spoke to me in the richness of the dawn, in the vast of array of pinks and golds and purples and oranges.

But He gave me an unassuming dawn, black to deep blue to gray. Gray. Non-descript.

I felt dull, like the sunrise.

My eyes filled with tears and I can’t even tell you why.

Stewart called me for my birthday, but I wasn’t home. He said he would call back, but he never did.

I had thought about it. I should call him, I thought, but I never picked up the phone.

And it’s easy enough to say, “He’s better off,
Chalk it up to the luck of the draw,
Life is tough, it was his time to go,
That’s all.”
Well, I don’t know about that…

Andrew Peterson, “Three Days Before Autumn”

Life is so short.  Just yesterday, I had been looking at Isaiah 40 —

The grass withers,
the flower fades,
when the breath of the Lord blows on it.
Surely the people are grass.

I had thought about the Tenebrae services a woman at Laity Lodge had described to me, with candles being extinguished one by one until the church was in total darkness. I had been thinking about the breath of the Lord, withering the grass, blowing out the candles, one by one.

Our world is dark and sad.

I suppose that’s an appropriate place to start Lent, in the darkness and sadness of a broken world. Surely the people are grass. Surely Stewart is grass. Surely I am grass.

The grass withers,
the flower fades,
but the word of our Lord will stand forever.

I suppose that’s an appropriate place to start Lent, too.

Beyond this grassy withered world, there is eternity. And it is filled with hope.

005

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.

Communion

Communion is a joyful time at our church.

For so many years, I was used to a different way of celebrating communion.  A somber, sober way.  A stay-in-your-seat kind of way.  A contemplative, inward-looking way.

Not that those are bad things.  Communion — eating the bread and drinking the cup — shows forth the Lord’s death until He comes again.  Death is a somber, sober thing.  It calls for contemplation and looking inward.

IMG_2808[1]At our church though, we walk to the front and receive the bread, a chunk torn from a small white loaf, with the words, “This is the Bread of Life.”  Next, we dip our bread into the challis and hear “This is the Cup of Blessing.” The bread, now soggy with grape juice, must be eaten immediately, unless it is so large that it takes several bites.  Children love this.

At first, I was critical of this method.  I mean, really, everyone knows Jesus didn’t use leavened bread, I would scoff to myself.  But the reality is that Jesus also didn’t serve wine in cute little cups that could be used later for VBS crafts.  No, modern communion only recalls that Last Supper; it doesn’t replicate it.  And that attention to the outward details is exactly the pit into which the Pharisees fell.  What’s important is what’s going on in the heart.  More precisely, for me, in my heart.

Once I set my inward Pharisee aside, I could laugh and enjoy communion.  It’s a little chaotic. Children grin broadly and sometimes laugh when they are handed a large piece of bread.  More than once bread has fallen into the challis.  One parishioner’s guiding eye dog, not always in harness, but still in church, sniffs the floor hopefully for a few crumbs.

Yesterday, I went forward for communion.  The pastor said, “This the Bread of Life,” and tore a piece from the loaf.  I looked up into eyes that were warm and tender.  This was someone who knows me and loves me.  The young acolyte lifted the challis for me.  His little voice was timid and sweet as he said, “The Cup of Blessing.”

Afterwards, as I sat in my seat, I thought about that last supper Jesus shared with His disciples.  I’m sure He looked them in the eye and smiled at them as He gave them the bread.  Maybe it was a little messy sharing the cup.  I know for certain, though, that the love was palpable.

It reminded me of something Frederick Buechner once wrote about a communion experience.  I’ll leave you with that.

… I was receiving communion in an Episcopal church early one morning.  The priest was an acquaintance of mine, and I could hear him moving along the rail from person to person as I knelt there waiting for my turn.  The body of Christ, he said, the bread of heaven.  The body of Christ, the bread of heaven.  When he got to me he put in another word.  The word was my name, “The body of Christ, Freddy, the bread of heaven.”

…There was nothing extraordinary about the priest knowing my name — I knew he knew it — and there was nothing extraordinary about him using it in the service because he evidently did that sort of thing quite often.  But the effect on me was extraordinary.

… For the first time in my life, maybe, it struck me that when Jesus picked up the bread at his last meal and said, “This is my body which is for you,” he was doing it not just in a ritual way for humankind in general, but in an unthinkably personal way for every particular man or woman or child who ever existed or someday would exist.  Most unthinkable of all, maybe he was doing it for me.  At that holiest of feasts we are known not just by our official name but by the names people use who have known us the longest and most intimately.

from Spiritual Quests:  The Art and Craft of Religious Writing,
edited by William Zinsser

Food for thought the next time you partake in communion.

Other Duties As Assigned

Last night (and the night before) Laurel said to me as she went to bed, “I’m sorry if I come in.”  Sometimes she wakes up in the middle of the night with a bad dream and comes in our room.

“It’s okay,”  I told her.  “It’s in my job description.”

I probably should have looked the job description over a little more carefully before I signed on.  Not that I ever really looked over any job description;  I was usually just glad to have a job.

Like when I worked at the Baseball Hall of Fame, I think my job title was “Souvenir Girl” and that pretty much summed it up.  I sold souvenirs and tickets.  Maybe it specified that I wasn’t supposed to try to charge VIPs, like the time I was going to charge Bowie Kuhn admission, but I honestly never read through it.

But a Mom Job Description — whew!  There’s a good one that I’ve seen:  The Mom Job Description. (Click to see it.)

I actually think I could do it in five words.

and other duties as assigned

No matter how complete the list, it would still be incredibly incomplete.

I knew I would have sleepless nights.  I imagined they would end when my children slept through the night.  Not so.  It’s not always Laurel waking me up.  Sometimes I wake with a particular child on my mind and just pray for them.

Prayer is definitely somewhere in the job description.  Under communication — with doctors, teachers, waitresses, and God.  Yep.

Jacob getting a haircut a few years ago.

No one told me that when I became a mom, I would have to cut hair.  But I have cut the boys’ hair for years.  All my boys are now teenagers and beyond.  I tell them to get their haircut by somebody who knows what they’re doing.  And yet, what did I do the other day?  Cut Jacob’s hair.  And I still don’t know what I’m doing.

I knew when I became a mom that I would have to prepare meals.  I was okay with that because I know how to read recipes.  My creativity in the kitchen is pretty limited.  But did I ever imagine that I would have to triple or quadruple every recipe every written?  And kids think math skills aren’t that important…

And all those years of raising children are really just a warm-up for caring for parents, a job I’m now cowering from.  Other duties as assigned.

It doesn’t seem to get any easier.

And I just seem to get tireder.

But Laurel can still wake me up any night of the week.

It’s in my job description.

Quiet Miracles

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.

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.