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.


Vodka and Ho-hos

Last week I attended a dementia care conference with Helen.

The conference was informative, but quite honestly, for me, the day was more about spending time with my daughter than about going to a conference. Helen is excited about pursuing something in nursing that supports caregivers and our aging population. Seeing her excited, passionate, and so engaged was worth the price of the conference.

At one point, one of the speakers mentioned going into the home of a person with dementia and looking in their refrigerator. The only things in it were vodka and Ho-Hos.

Helen leaned over to me and whispered, “That could be the title of a blog.”

“What?” I asked.

“You know, Vodka and Ho-Hos, like Hot Dogs and Marmalade,” she said.

I’ve gotten so used to Hot Dogs and Marmalade as my blog name that I don’t even think about it anymore. Probably new readers just think it’s a quirky name, or that I’m weird, or both. Both have some truth.

It’s more than a quirky name, though. It goes back to when my mother, in her dementia, was putting marmalade on everything. She would gaze lovingly at the jar of marmalade on the counter, placing her hand on it, like it was a long-lost friend. She put a layer of marmalade on casseroles, on leftover Chinese food, on ham sandwiches, and, yes, on hot dogs.

I tried to think what blog title I would choose now, as I care for my father. Here are two of my thoughts:

  • Jumbling the Jumble — His spelling has gotten more and more creative. When he does the Daily Jumble, he creates words that almost look like words which make them the hardest jumbles to unjumble. In the same way, his intellect makes his dementia much harder to recognize by people who don’t know him. He sounds so reasonable.
  • External Dialogue — His internal dialogue has become external. I’ll listen to him sitting on the sun porch. He’ll say, “I’m sitting here watching the birds. That one seems to like the food. I wonder what kind it is. It’s getting warm in here. Maybe I should change my shirt. Oh, look! Another bird.” It’s fascinating in some ways. I’ve asked him who he is talking to and he answers, “Myself!” as if that’s most natural thing in the world.

But I’ll stick with Hot Dogs and Marmalade — salty and sweet — like life.

(Also, I don’t like change.)


Trying to inspire myself to write more, I found this blogging challenge on Livelovesimple.com. I’ll give it a try for June.

30-day-blogging-challenge

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.

J is for Jumble

My father was always an orderly man.

His ties were hung neatly on tie racks in his closet, his business affairs neatly filed in folders, his expenses written in neat columns in ledgers. His photographs are labeled, his stamp and coin collections catalogued.

One of the evidences of my mother’s dementia was her setting the table for an army of guests. Non-existent guests. I would get frustrated with it because it meant that I had to put away all the china and silver that she had gotten out. Someone suggested to my sister that we could use the table setting as a bellwether for how she was doing mentally.

For a while, she set the table properly — fork on one side, knife and spoon on the other, dinner plate in the middle. Then one day, it was set like this —
It made no sense.

And I knew that my mother had lost a bit more of herself.

My father’s indicator has been the Daily Jumble.

For years he zipped through it within minutes of sitting down for breakfast. Then it started taking a little longer. Then one day, he wrote the word TOTATO in the answer space.

“Totato” would make perfect sense if he had been reading Andrew Peterson’s  On the Edge of the Dark Sea of Darkness. But it’s not a real word, at least not for Daily Jumble purposes. (Correct answer: TATTOO)

My sister and I laughed about it because, truthfully, when we had solved the jumble, we had both seen TOTATO before we saw TATTOO.

Of late, though, my father usually only solves two or three of the words. Occasionally all four. Sometimes with spelling mistakes.

He wrote PICKEL the other day.

Sometimes he makes up words. Like LORAY. When I told him that wasn’t a word, he responded, “Well, it should be!” (Correct answer: ROYAL)

Sometimes he just gets things mixed up.

He sorts through loose change, putting the coins into neat piles, but five quarters in a pile, not four.

And he sorts through pictures, throwing away photographs of people he can’t remember.

His neat and tidy orderliness has become a sieve through which bits and pieces of his life slip every day.

Word jumbles are just a part of it.

God Bless the Moon

Every morning I go downstairs and sigh when I see the tray table beside my father’s chair. It’s a mess.

I tidy it — but I know my organization will erode to disorder by evening.

The problem these days is that he has taken to playing the boombox my brother got him last year. My father doesn’t understand the difference between a DVD and a CD, or, for that matter, between the radio setting on the boombox and the CD setting. He needs help, but often won’t ask for it. The CDs and their empty cases cover his tray table.

Whenever he puts a CD called “Scottish Tranquility” in, we have this conversation.

Dad: This music is so mournful.

Me: It’s supposed to be peaceful.

Dad: There are no words!

Me: It’s instrumental.

Dad: I understand that, but where are the words?

Me: Instrumental means it’s just the instruments.

Dad (pointing to the CD case): But it lists the names of the songs.

Me: Yes, the songs still have names.

Dad:  This music could put you to sleep.

Me: That’s why it’s called Scottish Tranquility.

Dad: Can you put something else on? This is terrible.

It really isn’t terrible. It’s soothing and quiet, just what my soul needs.

This morning, at 4:30 AM when I got up for work, I looked at the mess on his table. Open books, half-done crossword puzzles, CDs, and empty cases.

“Why is everything always out of place?” I said out loud, frustrated, longing for that Scottish Tranquility.

Half an hour later, when I walked outside, I was pleased to see the moon in its proper place. It silhouetted the barn and reflected off the road. A restart to a messy day.

Something about that sight gave me peace.

The moon is always right where it should be.

The other night it was peeping through the trees.

Sometimes it’s out in the daytime.

I’ve seen it from an airplane.

And it was gorgeous in Bosnia.

photo by Nicole Flohr

I can’t count on the moon to be in the same place every night.

But it will never be misplaced.

It may not be as reliable as the sun — rising in the east, setting in the west — but it’s there.

All I have to do is look.

Ah, the Sea of Tranquility.