Buried Gold

It’s been a rough few days… make that weeks.

My father has been struggling with anxiety. Anxiety and dementia go hand-in-hand. The world doesn’t make sense. Memories jumble around. People telescope in and out. Switchbacks define the landscape.

“DON’T GO THROUGH THAT DOOR!” he cries whenever I leave him alone in his room. Waylaying me with his hand on my arm, he looks over his glasses and says in a confidential tone, “There’s nothing out there. Nothing. You can’t go there.”

But I must and I do. His world may be confined to one room. Mine is not.

If I coax him out to the sun porch, I struggle to coax him back in.

He’s leery of entering the dining room. He forgets that he sits at the head of the table and takes my seat.

Which, of course, is fine. Just odd.

“When I was in World War II, I was stationed by the Red Sea. I buried a lot of gold there. We need to go back and get it,” he told me the other day. Except he was in high school during WWII and was never stationed by the Red Sea. He went there on holiday when he was stationed in Ethiopia in the early 60s, but not WWII.

He told someone today that gold was buried in the back yard. Here.

The only gold we have here are little bits of dental gold that the dentist gave me after she removed some of his teeth. It’s gross, probably not worth much, and certainly not buried. That sounds like a good idea though because I don’t know what else to do with it.

I’ve been so tired because I’m up multiple times during the night with him. He can’t sleep. He’s so anxious.

Last night I made a to-do list so I could make sure I got done what needed doing today. Phone calls, shopping, and mail.

Mary added the part about rainbow sprinkles. Rainbow sprinkles make things better.

Karl added the great mom part. The pat on the back meant a lot.

Sometimes life gives more gut punches than pats on the back.

My father didn’t get to sleep last night until 11 PM — which meant that I didn’t either. He woke me at 5:05 AM.

Through the monitor I heard, “Sally! SALLY!”

I ran downstairs, my heart pounding.

“I’m having terrible chest pain,” he said. I called the ambulance.

The paramedic asked him about the pain.

“10,” my father replied. “Crushing chest pain,” he added.

By the time he got to the Emergency Room, he was fine.

“He has dementia,” I told the ER doctor.

“I got that,” she said, smiling.

“Can I get you something to drink?” she asked my father.

“I like beer,” he said. It was 6:15 AM.

He hasn’t had a beer since he ordered a flight a couple of months ago at his favorite restaurant. He was baffled by the four little beers served on a board. “What do I do with this?” he asked.

“You taste them,” I said.

He gave them to Karl.

We were home from the ER shortly after 7 AM. God bless the ER doctor who didn’t do a full cardiac workup.

Sometimes gold is in rainbow sprinkles and kind words.

Sometimes it’s in the not following protocol and using common sense.

Sometimes it’s buried in the backyard but I’m not going to count on that today.

While I Was Away

I can still see the woman’s face as she said the words to me.

She started off saying, “It’s such a good thing you’re doing — keeping your father home.” But then she stopped smiling and looked me in the eye, “You can’t do this forever, you know. There’s going to come a point when you have to place him somewhere that can take care of him.”

My dander rose a little when she said that. I thought, That day will never come.

It nearly came last night.

Ten days ago I took a trip with two of my children. Something changed with my father in the week that I was away. He started fearing certain doorways and needing certain doors to be closed. He started refusing to go down hallways in the house where he has lived for 50 years.

“You don’t understand, Sally,” he’ll say to me, gripping my arm and pulling me close to hear his words. “You don’t want to go there.” He’s emphatic. His words have an urgency evidenced by his tight grip as he says them.

When I tell him that I don’t understand, he says, “How can I explain this to you?” After a long pause during which he’s unable to come up with an explanation, he’ll simply say, “Please don’t open that door.”

Last night he turned off the baseball game and headed to the dining room, announcing that he was going to bed.

“Where are you going to sleep?” I asked.

“Here,” he said, and he pointed to his heart.

“Will you walk with me to your bedroom?” I asked, slipping my arm under his to support and guide him at the same time.

He planted his feet. “You don’t understand.”

After a bit of coaxing, loud arguing, pleading, and everything else I could think of, Bud and I, one on either side of him, forced him to take the steps he clearly didn’t want to take. Once he saw his room and his bed, he was fine (more or less). For a few minutes, though, it was ugly.

I lay in bed afterwards feeling discouraged and thinking, What would Penelope Lumley do?

Penelope Lumley is the plucky governess in The Incorrigible Children Of Ashton Place series (by Maryrose Wood). The motto for the school she attended, The Swanburne Academy for Poor Bright Females, was, “No hopeless case is truly without hope.”

I pictured the woman saying, “You can’t do this forever,” and I pictured the fictional Penelope Lumley reminding me that “No hopeless case is truly without hope.”

There has to be a solution.

In Norway (that’s where I went on my trip) we saw a house set up high overlooking a fjord.

Our guide told us that it has no road access. The old farmhouse had fallen into disrepair until a couple bought it and turned it into successful guest accommodations. Visitors arrive by boat at the base. They climb ladders and hike steep trails with switchbacks to reach Stigen Gard. It takes over an hour to make the ascent.

Some would have said the rundown farmhouse was hopeless, but no hopeless case is truly without hope.

The view at the bottom was beautiful.

I’m sure the view at the top is even better.

I just have to figure out how to do it.

Connect the Dots

My father asked his primary care physician yesterday,”Did I ever tell you how I came to Cooperstown?”

“I’d love to hear that story,” she said. She wheeled her stool a little closer and leaned it to listen.

“When I was in high school, I worked at a camp in Vermont,” he began. “I met Haile Selassie there. We drove down these winding roads” — and he drew large zig-zags in the air — “to get to the Red Sea. You know, I used to hitchhike a lot of places because you could do that then.”

Kamp Kill Kare, Vermont

Meeting Haile Selassie

Switchbacks

“Yes,” his doctor agreed, “things were different then. But you didn’t tell me how you got to Cooperstown. You were in Vermont.”

“Oh, right,” he said, and paused to think. “I was in Vermont. I worked at a boy’s, hmm…, I worked at an all-male camp. A man there named George Kempsel asked me what I was going to do with my life and I told him that I didn’t know. He told me, ‘You should go to Cooperstown!’ So I said, why not? And here I am.”

She smiled and thanked him for telling the story.

I wondered what she thought of it, but I didn’t have to wait long. When we left the exam room, she told my father to walk ahead of us so she could observe his walking. He complied and slowly toddled down the hallway with his walker.

“It’s interesting to see the dots,” she said.

“You know there were pieces from about five different stories there,” I said to her.

“Yes, I know,” she said, “and they aren’t connected, but he’s trying to connect them.”

I nodded. I asked her about a few things that were troubling me — his occasional difficulty swallowing, his struggle to dress himself appropriately, his general confusion.

“The thing you need to focus on is that he’s happy. He’s clearly very happy,” she said.

And that’s true.

The very first question she asked him — how are you doing? — elicited this answer. “I love where I live. I’m very happy there. And these fine people” (he gestured toward me) “take such good care of me. I have no complaints.”

But I kept thinking about the connect-the-dots that tell the story of a man. For my father, those dots have taken on a life all their own and are moving around in his landscape.

Realism moving to surrealism.

Maybe I can learn to appreciate the surreal.

Flowers and Weeds

Monday was not a great day.

I had taken my father to meet with his brother.

It was great to see my uncle and my cousin. While my father was so happy to see his brother, I was struck by my father’s struggle to engage in conversation.

A few months ago, at a doctor’s visit, his doctor asked him social questions about the family and his daily activities. When he didn’t answer immediately, I jumped in to help supply the answers. She looked at me and said, “I’m interested in the family and all, but this is also part of my assessment.”

She actually said it much nicer than that, but that was the gist of it. Stop answering for him. I need to get a handle on what he’s able to comprehend.

Since then, I’ve very consciously placed myself on the outskirts of his conversations.

At lunch with his brother, the conversation floundered.

Uncle Stewart: So, Don, what books are you reading these days?

Dad: Oh, I don’t know, a little of this, and — I guess I don’t read many books.

I stayed out if it. Nearly every day my father pulls new books off the shelf and starts reading them. Out loud. I put away eight books yesterday.  Everything from Outlander to the Book of Occasional Services to Murder at Fenway Park to Scotland Forever Home.

My uncle also tried talking to my father about the Red Sox.

Uncle Stewart: Who’s your favorite player on the Red Sox, Don?

Dad: Favorite player? Uh…

My father couldn’t come up with any names, so I jumped in. “How about Mookie Betts?”

He smiled broadly. “Yes, I like Mookie Betts.”

I felt sad afterwards — grieving a loss that was in progress, like watching a thief steal valued possessions and not being able to do anything about it.

Maybe that led me to my action later that day. You see, I broke one of three rules I have for dealing with a person who leaves unkind comments on my blog.

My rules are simple:

  1. Don’t engage. This includes responding in any way or acknowledging anything.
  2. Document everything. This is based on legal advice.
  3. Don’t change. This is also based on a discussion with my lawyer. I asked him, “Should I stop blogging?” “Absolutely not,” he said. “Don’t change your life to comply with a bully.”

I wrote a since-deleted password-protected post that bordered on engaging (Rule #1). Mostly the post bemoaned the lack of civility in our engagement with others. Still, I deleted it.

Yesterday, as I tended the flower garden, I found myself marveling at the way the more I cut the flowers back, the more blossoms they produce.

Daisies!

Look at all the daisies yet to come!

I moved to another garden where I’m in my third year of trying to eradicate Japanese Knotweed. I use a combination of Round-Up and hand-weeding. Surely, it will eventually die out. It’s so persistent, though.

As I prayed while weeding, one of Sunday’s scriptures came flooding through my mind.

“…a thorn was given me in the flesh, … to harass me … Three times I pleaded with the Lord about this, that it should leave me, but He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” … For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. (from 2 Corinthians 12)

It’s all a gift. The weeds, the thorns, the pruning, the losses.

The first dahlia of summer opened last night and I’m content.

 

Looking Ahead

Below is one of the first pieces I wrote about my mother’s dementia. At the time, I had no idea that we would only have her for another five or so years.

Today’s prompt is “Where will you be in 5 years.” Please excuse me if I don’t want to go there.

(This was originally published on Facebook on July 9, 2010)

The Twilight Zone

I think Rod Serling, the creator of The Twilight Zone, must have had some experience with a person suffering from Alzheimer’s. Some days, here in Cooperstown, that’s all I can think about – The Twilight Zone.

My mother is trapped in a very strange episode of The Twilight Zone. She is time-travelling from decade to decade, and it’s difficult to figure out where she is. She thinks she is 25 years old, but her face in the mirror tells another story. It must be frightening. She thinks she has a date to go to a dance, but her date never shows up. An old man claiming to be her husband does.

When she wakes the next day, she’s in a new place. Her husband is at work (he’s been retired for 11 years, but is at a meeting). The red barn across the street looks just like the barn that was across the street from their house (it is the red barn that is across the street from their house). “Whose car is that in that in the driveway? I need to borrow it,” she says, but it’s my car and I won’t let her.

Two days ago she was very worried about me. I was 6 years old and lost. I’m here with her; I’m not lost; I’m 50. Something doesn’t make sense, but she can’t figure out what it is. We move on.

The only constant in this Twilight Zone episode is orange marmalade. Orange marmalade is served at every meal – on hot dogs, on sandwiches, you name it. Orange marmalade – I really can’t figure it out. But I think I understand now what they’re talking about on the Food Channel when they refer to comfort foods. They’re talking about orange marmalade.

I think it has always been one of my fears that I will be trapped in The Twilight Zone. It was always such a scary show to me, because there would be that twist at the end – like M. Night Shyamalan had in The Sixth Sense. Reality isn’t what we’ve been led to believe that it is. For my mother, the twist doesn’t come at the end; it comes so often that it is dizzying. Another twist and another twist.

I want to cry.

I’ll have some orange marmalade instead.

Goals, objectives, strategies, outputs, and outcomes

~~ ONLY ONE GOAL ~~

The other night at dinner one of my children was talking about his goals. My daughter-in-law asked, “Are you talking about goals, objectives, strategies, outputs, or outcomes? They’re all different, you know.”

I messaged her this morning to ask her to list them again and then I started looking up the differences.

Most of the websites that define the terms are about grant-writing — which makes sense because Emily writes grants for her job.

I read through several websites. As best I can figure out,

  • a Goal is broad and general. It defines purpose.
  • Objectives are specific and concrete. They move you toward your goal.
  • your Strategy is the approach you take
  • your Output is the actual result of your work
  • your Outcome are the changes that were wrought as a result of whatever it is you’re doing

I smiled and nodded as I read. I understood, but the hard part is application.

So I decided to tackle just one goal à la Emily the grant writer.


GOAL — to keep my father home.

The top story in today’s newspaper cemented that: 

This happened in the nursing home where my mother had been. I get a pit in my stomach when I read these stories.

I know that not everyone can care for their family member at home for a number of reasons. To those of you who cannot, I give this advice: Be present. On a regular basis, be there. Talk to the staff. Talk to the other residents. Look through your family member’s closet and dresser to make sure things are there, clean, and belong to your family member.

My goal, though, is to keep my father home.

OBJECTIVE — Live in the same house with him.

STRATEGY — Move to Cooperstown. I know many people move their parent(s) in with them, but, for a number of reasons, this wasn’t the best option for us. I moved here in 2015 with my two youngest daughters and we hoped that my husband would soon join us.

This house had become the repository for many family members. In order for us to live here, we had to clear stuff out.

And we did.

But there’s still a long way to go.

OUTPUT —We’re here and my father is here.

We’ve reclaimed rooms in the house so the kids have space that is theirs. I’ve slowly whittled away at stuff that has accumulated here. Two loveseats went to the curb a few weeks ago and were quickly taken. I’m making headway with the boxes of papers. We still have more to go, but we’re moving in the right direction.

After being a frequent flyer at the Emergency Room for chest pain, my father’s doctor and I came up with a strategy. She told me to 1) Sit him in his recliner with his feet up. 2) Check his blood pressure. 3)DON’T take him to the ER for at least 2 hours unless his numbers look bad. The first few times were rough — he was very insistent that he needed to go, but with his BP, pulse, and O2 all normal, I told him that we needed to wait. Each time whatever it was passed and he went back to bed. We’re making progress.

OUTCOME —My father is still home. It’s not so much a change as standing our ground.

I think that’s an accomplishment. It’s not easy. It’s hard on everyone, but as the doctor we saw today said, “I would do anything for this man.”

My father is that kind of person. Having lived a generous life, he should be able to reap some of what he has sown.


Interruptions and Alterations

I usually misquote Henri Nouwen’s and say, “My interruptions are my work,” when someone asks me my favorite quote. Here’s the real quote in context:

A few years ago I met an old professor at the University of Notre Dame, Looking back on his long life of teaching, he said with a funny wrinkle in his eyes: “I have always been complaining that my work was constantly interrupted, until I slowly discovered that my interruptions were my work.”

That is the great conversion in our life: to recognize and believe that the many unexpected events are not just disturbing interruptions of our projects, but the way in which God molds our hearts and prepares us for his return.

~ from Out of Solitude by Henri J. Nouwen

But having recently reread Shakespeare’s Sonnet #116, I’ve been pondering this line:

… Love is not love
Which alters when it alteration finds

My father so faithfully loved my mother through her dementia.

From dating days

To when she could no longer brush her own hair.

Love did not alter when it alterations found.

My father set the bar high.