Kind

The ABC’s of how I’m feeling:

A is for ANGRY

B is for BITTER

C is for CRANKY

Clearly I’m doing this A-to-Z Challenge all wrong.

I feel angry.

And not kind.

I hung up on Time-Warner yesterday. Told them we were switching to Direct TV.

I’m not happy with them.

I posted a rant yesterday and almost immediately the person I ranted about contacted me. I was in the midst of a conversation with a different friend.

“I should have said something to her before I posted it,” I told my friend about my other friend — are you following this? Too many unnamed friends, I know.

But I knew the right way to handle the situation — and I didn’t do it. I posted a stupid blog post. (It has since been edited.)

This is how not to do things, kids. Talk to people who upset you. Don’t rant on your blog. Do as I say, not as I do.

I believe in handling things the right way and in kindness. Sometimes belief isn’t enough. We have to actually do it.

I’m working to memorize Isaiah 58, a chapter where God is dealing with a people who are oblivious to their sin.

“Look at me fasting,” they say to God. “Look at my sackcloth and ashes. Look how humble I am. Why aren’t you noticing any of this?”

And God says to them, “I really want you to be nice to each other. Don’t be grumpy. Don’t strike out at people. I want you to fast from your meanness. Put that aside instead of food. Undo someone’s yoke. Feed a hungry person. Invite a homeless person into your home. Sheesh!”

He didn’t really say the “sheesh” part. I added that.

But you get the point.

Can I just say here, in the depths of this post where few people will probably read, that life is hard right now? My father is struggling — and he doesn’t even know he’s struggling.

“You’re not thinking clearly,” my brother and I told him, ganging up on him to persuade him to have a medical test which may put us on a path to improvement.

“That’s what they keep telling me,” he said, in a tone that showed that he clearly didn’t believe a word of it.

It reminded me of a post that I had long since taken down. The post, from April 2011, had been called “Four Questions.”

It ends with kindness — which works for “K”.

****

Four Questions

Mom -- April 2011

Mom — April 2011

Question #1

I asked my mother this question one day when we were in the car, “Mom, do you know what Alzheimer’s is?

She knew the answer. “It’s a condition where people can’t think sensibly,” she responded.

Yes, it is. It’s not a condition where someone doesn’t think sensibly. They can’t. And yet, sometimes, they can. Like being able to answer that question with a pretty concise response shows some sensible thinking.

Question #2

Yesterday my mother handed me a sheet of address labels that had come in the mail to her.

“These are for you,” she said.

“I can’t use these, Mom,” I told her. “They have your name and address on them.” I tried handing them back to her, but she pushed them over to me again.

“That way you won’t forget me,” she replied.

I felt a little ache in my heart at those words. “Mom, I won’t forget you,” I reassured. “Will you forget me?” I asked it, even though I already knew the answer.

“Oh, no,” she said. “I’ll never forget you.”

But moments later, she forgot that she had even given me the address labels and took them back to her pile of things. She removed one and stuck at the bottom of a note she had written herself about dinner with a friend. It was a dinner with a friend that had taken place months or years ago. She had forgotten. But she stuck the address label on the bottom of the note.

“This will help me remember,” she said. Oh, if only it were that easy.

Question #3

Alzheimer’s is a condition where people can’t think sensibly. The varying pieces of information that are constantly coming at us are no longer being filtered correctly in the mind of someone with Alzheimer’s. It’s impossible to make sense of it all.

When my parents were going through some of the clutter that had accumulated at their house, my father picked up a kitschy dog made out of golf balls. “We could probably get rid of this,” he said.

Are you going to get rid of me?” she asked. With the filters missing, that was what she heard.

“You’re too valuable,” he told her. “We’re not going to get rid of you.” She still has value. She needed to hear that.

Question #4

In difficult situations, so many people show little kindnesses. With my mother’s Alzheimer’s, people have been so kind. Total strangers, long-time friends and family members have all pitched in to keep my mother safe and to make life easier for my father. I know my father appreciates it, but I often wonder if my mother is even aware.

Yesterday, she answered the unasked question I have had for a long time. Are you aware of all the things people do for you?

She was looking for my brother. “He’s up at his house, Mom, right next door,” I told her.

“That’s right,” she said. “He has been so nice. Every night he brings dinner right down to us so I don’t have to fix anything.”

Yes, he does. And his wife does. And I’m so glad you recognize that. Even if you don’t always recognize me. I know it’s because you can’t think sensibly.

Juggling

“Can you still juggle?” I asked Helen the other day.

She picked up three somethings — I don’t remember what they were — pom-poms or apples or Easter eggs — and juggled them quite handily.

I’ve seen her do it before. We have a video of it. As she focuses on juggling golf balls, she keeps her eyes on them and her mouth is wide open.

Like a ukulele player who presses his lips together or sticks his tongue out to the side while playing.

We aren’t all professional.

When jugglers juggle they have to focus, and something else may fall by the wayside in order to keep the balls in the air.

I guess I’m back at imperfection.

This is supposed to be about my mother.

And juggling.

***

My mother was most at home in the kitchen. She cooked for our family, for her church family, for special occasions, and for the every day. Huge spreads. Humble soups. Everything always delicious. (Except the beef heart. And the lamb burgers.)

Her juggling took place in the kitchen. She had an amazing talent for getting all the food on the table piping hot for us to enjoy. Her timing was perfect.

I, on the other hand, serve lukewarm green beans with hot meatloaf and cold potatoes. I forget to heat the plates the way that my mother did. I can’t get people to the table on time. I have not yet figured out the art of juggling many food dishes in the kitchen.

When my mother began struggling in the kitchen, we should have seen it for it was, a sign of dementia. She couldn’t keep all the balls in the air anymore. She called me for help more and more.

And I was resentful.

Critical.

Unsympathetic and unaware that she was moving into a strange vortex that left her confused in the kitchen.

“You make such good scalloped potatoes,” she called one day to tell me. “Could you make some for Dad and me? We have company coming tonight.”

I bristled inside. I was home with seven or eight children, tired, frustrated — and honestly, the last thing I wanted to do was make scalloped potatoes for my mother so she could go golfing and still have a nice dinner to serve her guests.

But I did it.

In retrospect, I think she was worried about her cooking — and how sad that is for me to realize today!

But she had dropped one of the balls she was juggling and asked me to help pick it up.

If only I had known. If only I had understood better in those early days.

People — be patient and kind. Don’t mock the open mouth of someone keeping the balls in the air.

We’re all juggling something.

And we all drop balls.

We all need help, not criticism.

Community

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.

To have no one.

In contrast —

C is for Community.

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 Greece

My mother and father on their trip to Greece

Strangers at the start, friends by the end

Strangers 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.

 

Benevolence

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 and 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.

Be patient.

Be understanding.

Be kind.

Be benevolent.

 

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.