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.

 

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.


The Perfect Job

“Do you ever think about what it would be like if things were different?” my husband asked yesterday.

“What do you mean?” I asked.

“Like, what if the job in Hershey had worked out,” he said.

Ah, yes, the job in Hershey. In 2005, Bud had taken a job in Hershey, PA, that turned out to be not exactly what it looked like on the surface. In fact, we found out later that he had been one of a string of people who had walked through that revolving door and walked out again within a few months. The toxic work environment hadn’t been evident at interview time — but he saw canaries dying everywhere in that departmental coal mine after he started.

Five hours away, I was home with the children. Our oldest had started college, but our youngest was not yet two. I started having back spasms from the stress of trying to homeschool while keeping our house clean enough to show to prospective buyers.

Then I did what any person in that situation would do — I got a puppy.

“I try not to think about Hershey,” I told Bud. “That was a stressful time.”

“But if we were there, you wouldn’t be here,” he said wistfully. He and I both want to be together again.

After Hershey, my husband took a job in Binghamton, about an hour and a half from Cooperstown. Our Cooperstown house sold and we bought a house in Greene, an hour and fifteen minutes away from Cooperstown

The process of moving to Cooperstown to help my father happened in small steps. First, I started coming once a week with the girls to help him with my mother. Then twice a week. Then spending one overnight. Then for the summer because the kids had jobs in Cooperstown.

It was like boiling a frog, raising the temperature one degree at a time.

Caring for my parents became a larger and larger job, but I didn’t see a good alternative. I still don’t.

Before the fall when I actually moved here to stay with my father, my husband and I discussed the options.

“I think I’ll be able to work remotely when we get this new computer system in,” he said.

Sometimes I AM wishful about that — because it still hasn’t panned out.

During the first fall I lived here with the girls, my father had a fall in which he hit his head. It caused a subdural bleed. A month later my mother died. The doctor told my father he couldn’t drive anymore. My father had brain surgery. I was so glad I was here for all of it.

But the journey of aging only goes in one direction.

I love what I do, though. I love being able to help people I love. I know this is a privilege; not everyone has the support or the means to do it.

Every day, I am grateful that I can.

One small change would make it the perfect job — to have my husband here with me.


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.

V is for Vague and Vivid

Ethiopia

Last night at dinner I asked my father to tell me the turtle story again. I had been a little surprised that my sister had never heard the story and wanted to make sure that I hadn’t imagined the whole thing.

“Do you remember the story of the turtle eggs when you were a little boy?” I asked.

“What? Oh… I think my father told me to go check the bag in the pantry and there were turtles in it,” he said. Ah — the detail of the pantry. I had forgotten that.

“But,” I persisted, “didn’t some bigger boys give nuts to you and tell you they were turtle eggs?”

“Maybe,” he said vaguely.

“But when we came down that winding road to the Red Sea, I can still see the man’s face,” he said, as if this was a continuation of the turtle story. “You know that road had so many switchbacks — back and forth,” and he drew a zig-zag in the air to show me, “and when we got there, the man had this big smile on face because he was so happy I had arrived and he could go home.”

Switchbacks

This memory crops up quite frequently these days. He remembers vividly the expression on one man’s face at a very specific point in time.

“Where is Mom buried?” he asked, as if something about that memory had reminded him of her. It was the first time he has ever asked me that.

“At the columbarium at the church,” I replied.

Last year for Mother’s Day, I had tried to interest him in bringing flowers to the columbarium. I bought a plant and had Bud drop us off at the cemetery before church so we could pause for a moment with Mom. My father, however, didn’t pause. He just hurried toward the church. I placed the pansies there by myself, feeling a double sadness, and hurried after him.

“I met Elinor when I had that job picking up IV bottles from the nurses’ stations. We got to talking and hit it right off,” he said, continuing last night’s dinner conversation.

I started to ask him to elaborate on it. I wanted to know if he remembered what they talked about (which was hiking).

Arial view of the switchbacks

“But you should have seen that guy’s face,” my father said, changing gears again without notice. “He had the biggest smile because I was there and he could go home.”

I’m never quite sure what I should take from the story.

Is it the switchbacks? My father certainly incorporates switchbacks into many conversation now — not necessarily the story of the switchbacks, but actually switchbacks, where he changes direction so often and so quickly that I can’t always follow.

Or, is it the arrival at a new place and the beginning of a great new adventure?

Or, is it the idea of going home and the great joy that brings?

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.

F is for Falls

“Tell me about the fall,” the Physician’s Assistant asked as he removed the stitches from my father’s forehead the other day,.

“It’s a long story,” my father deflected.

“I’d like to hear it,” the PA said.

My father launched into his very short story — “I was standing at the foot of my bed and I fell. I’m not sure how or why.”

“Have you had other falls that require stitches?” he asked.

“I’ve never had stitches before,” my father replied.

I don’t know if he’s never had stitches before, but he hasn’t required stitches in recent years.

His last serious fall was early October 2015. I was making my annual pilgrimage to Nashville, and my father could still be home alone at that point. He wears a Lifeline pendant which can detect falls, so when he fell that night, my brother next door was notified.

Peter came down to the house where he found that my father had fallen and hit his head on some bookshelves in his bedroom. My father was quite insistent that he was fine. The ambulance came, checked him out, and he refused to go to the hospital.

“I’m fine,” he said.

But he wasn’t fine.

A few days after I got home, he said, “That fall must have done something to me. Something’s not right.”

I took him to the hospital, and, sure enough, something wasn’t right. He had a subdural hemorrhage that had bled into the ventricles of his brain. Because he hadn’t gone to the hospital, no one had told him to stop taking his Warfarin, a blood thinner, and the bleeding had gone on for nearly a week.

This turned out to be a good-news/bad-news situation. The bad news was that his injury was pretty serious and would take some time to resolve. The good news was that the scans of his brain also revealed another condition called Normal Pressure Hydrocephalus (NPH). The NPH may have been present for some time, and had probably caused the instability that led to the fall.

The next summer a neurosurgeon put in a ventriculo-peritoneal shunt that relieved the pressure in his brain by draining fluid into his abdominal cavity. It greatly improved his motor stability.

post-surgical Dad at the butterfly conservatory

Of course, he doesn’t remember any of it now.

When we were in the ER for the latest fall, the nurse asked if he had ever fallen before.

“No,” was the immediate answer.

“Don’t you remember the fall when you hit your head on the bookshelves?” I asked him.

He looked at me blankly. “No, I don’t,” he replied.

It was a lifetime ago. In the intervening two years, my mother had died, he had had the surgery, gone to rehab, and started having a home health aide come to help care for him. He had lost his driving privileges. He couldn’t live alone.

When he fell most recently, I was downstairs to help him immediately. I could see the gash on his forehead.

“We need to take you to the hospital,” I told him.

“No, I’ll be fine,” he said.

Some things don’t change.

Or perhaps they do.

We overrode his wishes and took him to the ER.