Category: dementia

dementia · Faith · family

Flowers and Weeds

Sally12 Comments

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.

 

Alzheimer's · Blogging Challenge · dementia

Looking Ahead

Sally2 Comments

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.

Blogging Challenge · dementia

Goals, objectives, strategies, outputs, and outcomes

Sally4 Comments

~~ 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.

Blogging Challenge · dementia

Interruptions and Alterations

Sally2 Comments

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.

Blogging Challenge · dementia · family · Life

Vodka and Ho-hos

Sally8 Comments

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

dementia · family · Life

Premature

Sally7 Comments

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.

A to Z Blogging Challenge · About My Dad · dementia

J is for Jumble

Sally3 Comments

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.

dementia · family

God Bless the Moon

Sally5 Comments

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.

dementia · family

Old Photographs

Sally5 Comments

One of my kids told me, “I pulled some pictures out of the garbage by Grampa’s chair yesterday.”

“What?!” I said.

I knew my father had been going through old photographs. It’s something he enjoys. He’ll sit there for hours sifting through and resifting.

“Hey! Have I ever shown you this one?” he’ll ask as I walk past.

I’ll pause and squint to see the glossy black-and-white snapshot in his hand. “This is the house I used to live in,” he’ll explain, and sometimes launch into a story of how his cousin lived right next door and that there was a path worn through the trees, or how he and his father hid time capsules under the floorboards or in the walls.

“This is my father,” he’ll say. “He was a pretty handsome fellow, don’t you think?”

“Here’s one of my old girlfriends,” he’ll say, and my stomach gets a little squeezy because I don’t want him thinking about old girlfriends even though I know that’s silly.

As my son was telling me about the photographs that had been in wastebasket, he looked in. “Here they are again,” he said, and he pulled several out.

I was upset and a little bewildered. Why was my father discarding these old photographs?

“I think it was just an accident,” my son said, reading the unhappy look on my face.

No, the first time could have been an accident, but twice in two days seems pretty intentional.

I’ve heard my father say, in very general terms, “I don’t know who’s going to want all this stuff.”

“What are you wondering about?” I’ll ask.

“That Johnny Damon statue,” is a common reply. He went through a period convinced that we needed to take Johnny Damon to the Baseball Hall of Fame. Surely they would want it. 

I’m not so sure.

Maybe he was thinking that no one would want these old photographs.

I looked at the most recent batch pulled from the garbage. They were all taken in Seligman, Arizona, in 1924.

The story goes that my grandfather and some friends had driven a car across the country in 1924, stopping in towns along the way to sell advertising on the side of the car and work for a short stint to earn money for the next leg of the journey.

Here’s my grandfather.  He is a handsome fellow.

This is the Harvey House where I think they stayed. I know that because my grandfather was very good about writing words on the backs of photographs to identify the picture.
Except he didn’t identify this one but I think it’s him and his friend and the car and a roadside picnic.

I’ll have to ask my uncle or my aunt.

My father’s memory is dwindling.

And his thinking is muddy.

Otherwise, I doubt he would have thrown out the pictures.

In any event, they’re safe now.

dementia

It’s like I never made a sound

Sally3 Comments

I was scribbling times and notes to myself on my meet program when I heard two boys talking behind me. Despite the loudness of the pool area — the splash of water, coaches yelling, parents cheering — their conversation caught my attention.

“You know, the water isn’t wet until you touch it,” said one.

“What are you talking about?” asked the other.

“The water isn’t wet until you touch it,” the first boy repeated.

“It’s always wet,” said the second boy.

“Nope, not until you touch it,” said the young metaphysicist.

I quickly wrote the quote into my program so I would remember it.

That conversation reminded me of a Dear Evan Hansen song which then ran through my head for the rest of the day. The song, Waving Through a Window, had nothing to do with water or wetness, but had everything to do with metaphysics of perception, but on a deeper level.

Evan Hansen had taken the classic question — if a tree falls in the forest and no one is around to hear it, does it make a sound? — and morphed into a question of something more.  The original question really is: can something exist without being perceived? That’s exactly what my young swimmers were discussing. Is water wet if no one touches it?

The question Evan Hansen asked was: when you’re falling in a forest and there’s nobody around, do you ever really crash or even make a sound?

The whole song is sad, about being on the outside looking in and never really feeling like you belong.

It’s about the pain and insecurity of being vulnerable, and so choosing not to participate in society.

It’s about isolation.

Sometimes I think about the hidden-ness of what I do. Nobody sees the dishes, the laundry, the putting away of books and papers that will be gotten out again tomorrow by a man who doesn’t remember. Nobody sees the toilet cleaning or the sheet washing or the cleaning of unmentionables in unmentionable places.

People see me at the store. They ask how my father is doing, and I hesitate in my answer. He mixes up the Jumbles and puts wrong answers in the crossword. He makes comments that make me blush, or make me upset, but ultimately remind me that he grew up in a different era. He needs help finding things — his wallet, his hearing aids, his pens — and I help him.

But when someone asks how he’s doing, all those things run through my mind and I say none of them.

Yesterday a woman placed her hand on my arm while I hesitated. “I know,” she said. “I know.”

And I knew that she knew.

If you are a caregiver and never tell people all the things you do, it doesn’t mean you don’t do them.

Like the tree crashing in the forest, people who have heard that sound know that it exists. Other caregivers know what goes on in the home.

I believe that water is wet even before I touch it, and that trees make a sound when they fall, and that when people struggle, even if nobody sees them, the struggle is still real.

That thought is a comfort to me.

And reminds me to be kind.

Taking a page from Osyth‘s playbook — I used  a line from the song for my post title.