Why Norway

The place we used to stay in Myrtle Beach had no phones in the rooms. This was back in the 70s, when phones that fit in your pockets weren’t even a twinkle in a computer chip’s eye. Phones had dials and cords.

In those first few years in Myrtle Beach, if someone needed to reach my father at The Teakwood, they had to call the motel office. Someone from the office would find my father and he would have to go to the office to take the call or return the call. Things really advanced when they got a phone with a portable handset.

At the Teakwood

I asked my mother about the lack of phones. Somehow it made The Teakwood seem inferior to its phoned competitors.

“It helps Dad relax to get away from the telephone,” she said. I hadn’t thought about the tyranny of the telephone until that conversation.

I recently heard on a podcast that the presence of a phone at a meal — even if it’s facedown on the table — causes the conversation to be more shallow.

But this isn’t about phones.

It’s about why I went to Norway.

Last year I traveled to Europe for the first time since I was 5 years old. Twice.

The first trip was to take my father to Normandy, something he had longed to do for many years. I was excited for my father, but ambivalent for myself. I knew that I should be excited. I just couldn’t muster up the excitement on my own.

Then we went to Normandy and I loved it. I think I could live in Bayeux and be quite content there. The cathedral, the farmers’ market, the patisseries, the narrow streets, the old buildings — all of it lovely. I didn’t think anything could top Normandy.

Until Bosnia two months later. The land, the people, the hospitality. I came home from that trip quite full.

So when I was feeling depleted this year, and so many people kept reminding me that caregivers need to be sure to take care of themselves, I thought about what had pressed a reset button in my soul and given me rest and strength for the days ahead. Travel. Like the phoneless Teakwood did for my dad.

I applied and was accepted to a writer’s workshop with Ann Voskamp — but it was in the wilds of Alaska. When I realized how remote the workshop was, and how, if something happened at home, I would have a hard time making an emergency trip back, I asked to postpone my attendance for another year.

Then I considered a trip back to Bosnia, but nothing seem to fall into place with that.

Finally, I asked Karl — who had been saying that he wanted to travel — where he wanted to go.

“Norway,” he said.

So Karl, Mary, and I traveled to Norway. And Denmark. And Sweden.

If an emergency had come up, I was always near an airport.

Except for the day we kayaked in the fjords. But truthfully, that was the most renewing day of all.

Premature

That little pat on the back that I was giving myself was premature. Way premature.

I had gone to the gym this morning to work out. I love working out. Love it, love it, love it. I wish I could get there every day.

For me, exercise is such a key part of my well-being. I feel more optimistic after I exercise. Big ideas come to me while I exercise. My body craves healthy food on the days I exercise. It’s an all-around win-win-win.

So this morning I exercised.

In the course of elevating my heart rate, oscillating ropes, swinging the kettlebell, and dripping with sweat, I started thinking about caregiving and how far I’ve come on this journey. I used to get so frustrated with my mother — but she had a bitter sharpness that my father doesn’t have. She would harp at me, insisting on something that wasn’t, or lash out at one of my children for something they didn’t do. She could be a challenge.

My father, on the other hand, laughs at the darnedest things. He’s happy and content. He works on his puzzles, reads his books, and listens to his music. People stop to visit him. He gets a bowl of vanilla ice cream every day. He watches the Red Sox play nearly every night. It’s a good life, I think.

So I was working out and thinking about all this. I was thinking, I’ve got a good handle on this caregiving thing. I think I’m doing all right.

I patted myself on the back and began mentally writing a blog post of encouragement for other caregivers. I wanted to tell them that they’ll have good days, maybe even a bunch of them in a row.

When I got to the house, Dad was coming out the door with the dandelion-stabbing tool (surely, there’s a better name for it) because he wanted to start getting after the dandelions. I asked him to stay on level ground and checked to make sure he was wearing his LifeLine in case he fell.

As I headed inside, almost as an after-thought, he said, “It was the strangest thing, but I found all this money today. I left it on the table for you.”

“Where did you find it?” I asked.

“Here and there,” he said, waving vaguely with hands to indicate that it was in a variety of places like the dandelions in the yard.

Puzzled, I went to investigate.

My wallet was sitting out on the kitchen table. I looked inside and it was mostly empty. My heart sank.

I found all that money he had been talking about, stuffed like a bookmark into a book. It was a twenty and three fives — $35 that had been in my wallet.

I looked in the garbage and found gift cards, receipts, coupons, a note from Mary, and other papers that only an hour before had been in my wallet.

I grabbed the crumpled papers and marched out to my father who was still standing on the deck holding the dandelion-stabber and looking at the dandelions.

“Did you find the money?” he asked innocently.

I exploded. “That was the money in my wallet,” I said. “And these –” I held out the papers I had pulled from the garbage — “these are mine.”

“They aren’t anything important,” he said.

“Not to you, but to me they are,” I said, far more loudly than I should.

And the argument went on far longer than it should have.

I knew in my head that he couldn’t understand, but I was frustrated.

Gone were back-pats. Gone were my words of encouragement. Gone was any goodwill left over from my workout.

I went in the house and fixed my green smoothie. From inside the house, I watched as he sat in the grass and stabbed at dandelions. I stabbed at writing words of encouragement and this is what came out.

Fellow caregivers, some days are like that.

But it’s still all so good.

The sun is shining.

The dandelions are smiling (unaware of their fate).

The smoothie was delicious.

And I have $35 safe in my wallet — upstairs now.

Mentor

A Facebook friend has been asking a “Question of the Day.” Yesterday, he asked this:

Who is your “I’ve never met you and likely never will” mentor?

I realize more and more how much of a mentor my mother was for me. She was, above all the other things, a caregiver. Obviously I’ve met her, though. I just didn’t appreciate her enough in that role.

The thing is — a caregiver’s mentor is never going to be in any spotlight.

She’s going to be home, quietly doing mundane tasks.

She’ll find her strength and solace in an abiding relationship with God.

She’ll be able to count on one hand her closest friends, but will still have a wider circle of loved ones, people she cares deeply about and who care deeply about her.

However, most people won’t even be aware of half of what she does.

*****

The other day, at Cooperstown’s Antiquarian Book Fair, I found a treasure that comes close to finding my mentor.

I found a Book of Common Prayer with a name imprinted on the front: Rachel Ware Fuller.

Inside, the inscription told me that the book had been a gift from her son.

And then, there were pages and pages of handwritten notes.

I thought I had found the treasure I’ve been searching — a mother’s spiritual summation, all the things she has learned through parenting and wifing and friending and living. This would have been the mentor I never met and never will.

However, further inspection showed the notes to be from a Samuel Clark Harbinson, an Episcopal rector at a New England church. I’m not sure how the book was transferred from Rachel Fuller to him, but it was. Another inscription revealed that.

His notes are fascinating. And challenging. And thought-provoking.

Someday though, I hope to find a well-worn book with the margins and flyleaves full of notes written by a caregiver. I want it to have a coffee spill on a page or two, and ink smeared by tears on many pages.

And notes. Lots of notes.

I’ve already started accumulating a collection of other people’s journals and some religious books with notes in the margins.

But I’ll keep looking, at book sales, and in book boxes, for this Holy Grail of books.

That’s where I’ll find my mentor.

Taking Care of Me

In the selfishness of my heart, I could picture it — somebody taking care of me.

Fixing all my meals.

Bringing me the foods I like.

Tending to my needs.

Like a cruise ship — without the cruise or all the people.

Being a mom and a caregiver is exhausting at times.

I suppose it doesn’t seem like anything too difficult. How hard is it to fix tomato soup and a grilled cheese sandwich every day?

Or to do laundry.

Or take out the garbage.

The monotony of it could tend towards boredom. Kathleen Norris, in her must-read book Acedia & Me, said,

Might we consider boredom as not only necessary for our life but also as one of its greatest blessings? A gift, pure and simple, a precious chance to be alone with our thoughts and alone with God?

She reminded me of why I am so suited for this job.

While washing the dishes, most of the time I am quite alone with my thoughts and with God. I am running through the scripture I’m memorizing or praying for family and friends. When a family member joins me to dry the dishes, it is a special delight.

The truth is — a cruise has never appealed to me. All that basking in the sun and eating rich foods and drinking fancy drinks.

Okay, the sun part sounds good.

But the lush extravagance doesn’t.

I’d rather be repotting plants.

Or weeding the myrtle.

Or taking out the garbage.

img_1154Yes, I find satisfaction in dragging the big garbage can to the end of the driveway for the garbage man to pick up. Today, I’ll clear a swathe of snow as I do it and walk back to the house in the path cleared by the can. Later, I’ll carry the much lighter can back to the house and put a fresh clean bag in it for the new week.

The other day though, in the grumblings of my heart, I wished someone would take care of me. In a flash I saw it — lying in a bed in a nursing home, having to be turned to prevent bed-sores, having someone spoon the food into my mouth all the while talking with a co-worker about the weekend past or the weekend ahead, having someone choose what I was to wear and dressing me in it.

I shuddered.

Nope.

I take it all back. I don’t want someone to take care of me.

I’m fine, thank you.

And so very thankful to be able-bodied and independent.

Do

The very best advice ever given to me was given by my mother-in-law.

When I had just one little boy, life was fun. Oh, I thought it was hard because he didn’t sleep very well, but, all in all, it was fun. I had plenty of hands and plenty of help.

My mom, Philip, and me

My mom, Philip, and me

When I went from one to two, life just got funner.

Two artists

Two artists

Going from two to three, though, meant that I ran out of hands, but that was okay. Backpacks and front carriers worked well.

Feeding seagulls

Feeding seagulls

From three to four presented a problem. I had no where else to put a child.

Myrtle Beach - 1993

Myrtle Beach – 1993

Somewhere in that two-three-four child range, I realized I was really struggling to do this job. My mother-in-law raised thirteen children. Well, actually, fourteen, because a cousin came to live with them when her mother died. I asked my mother-in-law one day how she did it.

“You just do,” she said. That’s all there is to it.

D is for Do.

“Fred” asked me a riddle the other day, “How do you eat an elephant?”

I think he was hoping I would say, “With an elephant fork,” but I knew the answer — one bite at a time.

You just do.

You take one step forward. Then another. Then another.

That advice helped me through child-rearing, and later, in the midst of adult caregiving. Caring for someone with dementia is not unlike caring for small children.

When life is overwhelming, look around for something you can do — some small thing, a baby step you can take forward or even sideways, a tiny bite you can take of the elephant.

Do.

Family Reunion

My mother-in-law (center) surrounded by the fruits of her “do”-ing — 2011

 

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.

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.