My memory’s Rolodex spilled on the floor; Once neatly categorized, now no more, Like that drawer full of photographs dumped in the bin. I’m so glad you rescued it. Now where to begin?
Did we live in this green house before the old farm? Oh! There’s Grandma’s quilt — the one that was warm! Remember this outfit? Remember that day When you took Johnnie fishing and they all got away?
Look! Uncle Charlie! Where does he live now? He’s been gone five years?! I’d forgotten somehow. What about his fancy red car in this shot? Of course I remember! You think I forgot?!
But who is this tall man holding a lad? No! That’s NOT my son. You are quite mad. My son’s in the backyard building a fort Or playing soccer — he does love that sport
Oh, please help me sort these. I can’t do it alone. Most of these faces are people we’ve known. My memory’s slipping. Okay — it’s a mess! But look at this photo! Remember that dress?
Blessed are the Painters of pictures for their work brings joy to others.
Philip water-colored a picture.
Owen water-colored himself.
Two artists
Blessed are the Painters of chicken coops for they beautify the world, or at least a tiny piece of it.
1989?
2019 — a work in progress
Blessed are the Preservers of thePast; blessed are those who Push for Progress;
In a sidewalk in Boston — “Friend – Look up and see the North Church Tower … This view preserved for all future generations…”
View of the North Church Tower
And blessed is the balance between the two.
I recently went to Boston with my daughter, Mary. We walked the Freedom Trail from Faneuil Hall to the Massachusetts State House. Along the way, we saw the large medallion pictured above, telling us to “Look up and see the North Church Tower.”
“One if by land and two if by sea…” My mother could recite Paul Revere’s Ride well into her dementia. Earlier that day, I had attended worship at the old North Church, where the usher let me into my own private box. I read the sign on wall there that told of Charles Wesley preaching there. I was in awe.
But I could barely see the North Church from the site of medallion. Oh, it’s there. It’s spire rises above whatever that blue-green thing is.
Boston is a city that works hard to preserve the past.
It’s a balancing act, though.
For instance, the Old Corner Bookstore, built in 1716, is now a Chipotle restaurant. Mary bemoaned its fate. On the other hand, I pointed out to her that the building was going to be demolished in 1960 and turned into a parking lot, but investors purchased it and revitalized it. It’s still standing.
Preservation versus progress.
Both are necessary.
Blessed are the Perseverators.
I can’t remember exactly what my father was doing at the time, but I remember Helen telling me that he was perseverating. It was a new word for me,
but certainly not a new concept.
The repetition that goes with dementia, or autism, or brain injury may be all too familiar to some of us.
Lately my father has been perseverating over church. Our conversations go like this:
Dad: So are you going to take me to church?
Me: No, Dad. Today is (fill in the weekday). You go to church on Sunday.
Dad: Why?
Me: Because that’s when they have worship services. If we went there right now, nobody would be there. You go on Sunday.
Dad: Ok. (short pause) Are you going to take me to church now?
Me: No, Dad. Today is (fill in the weekday). You go to church on Sunday.
And so on.
He wants to go to church, and I remind myself what a blessing that is. He perseverates over a positive.
Blessed are those who Persevere.
I admit that I get frustrated with the perseverating.
It happens all day.
It happens all night.
I’m getting tired.
Yesterday I had to re-certify my lifeguarding. For the first time, the pre-test — a 300 yard swim followed by a timed brick retrieval — was daunting.
I knew I could do it, but my body wasn’t so sure.
Had I thought of it, I could have sung the Dorie song — “Just keep swimming, swimming, swimming…”
Instead, I did the Little Engine That Could — “I think I can, I think I can,” and slowly, slowly I completed the swim. (Okay, well, not too slowly. I swam it well within the allotted time.)
Perseverance sometimes requires a series of inner pep talks.
Each time I had to climb out of the pool at the wall, I had to remind myself that I could do it.
Each time I start feeling frustrated with the perseverating, I also have to remind myself that I can do this.
I can.
I can.
I love this man and I can answer the same question 257 times.
In one day.
Blessed are those who persevere, who run the race with endurance, who finish the swim test, who live with perseverators, for they shall hear, “Well done.”
But do you imagine that if you become as prosperous as the United States you will no longer have needs? Here the needs are even greater. Full bellies have not brought peace and satisfaction but dementia, and in any case not all the bellies are full either. But the dementia is the same for all.
Thomas Merton, first draft of Day of a Stranger
Day of a Stranger was written in response to a request from a South American editor who asked Merton to describe a typical day. Some of it feels like stream-of-consciousness writing, but he pulls dementia into his thoughts on poverty and prosperity.
Dementia is indeed wealth blind.
Dad feeding Mom while I-Can-Do-It Mary watches.
My mother’s wealth, even in her dementia, was the constancy of my father. He visited my mother twice a day every day. I never saw any family visit I-Can-Do-It Mary.
Last week, when the EMTs arrived at the house, one asked my father, “How do you feel?”
“With my hands,” he replied.
The EMT didn’t get it.
I don’t think he expected an 80-something man who had just had three syncopal episodes to be doling out one-liners.
My brother and I both laughed. Then Peter tried to get him to answer the question by asking it again, “How do you feel, Dad?”
Same response.
He often answers “How did you sleep?” with “With my eyes closed.”
His joking may irritate some, but not me. I am so glad to have been raised with a sense of humor. It’s such a gift — to be able to laugh in the midst of a terrible situation.
I remember when we were all gathered around my mother’s bed as she was dying. Different people were sharing things she had said and done, thanking her for the many ways she had blessed us.
During a lull, one of my kids said, “No charge.”
We all burst out laughing (and maybe crying). That’s what my mother would say when we got up to use the bathroom.
It could be a little embarrassing when we had someone over to visit. They would ask where the rest room was and excuse themself. My mother would call after them, “No charge!”
But it was her way of being funny — and it carried long into her dementia.
When I have dementia, I’m sure I’ll tell dumb jokes. I’ve been gathering them this year for the swim team.
I’m not coaching this year so that I can be home more with my father. Now my role is parent-coach liaison, registrar, information disseminator, question answerer, meet signer-upper, and joke teller.
I carved out the joke teller niche for myself.
One of the other coaches is very punny. She helps me.
Now the kids are sharing jokes with me, too. Here’s today’s offering from a swimmer:
Who cleans the sea?
Mermaids
Why did the fish go to the sand bank?
To get sand dollars!
In November, I started off with a few swim jokes,
Q: What kind of race is never run?
A: A swimming race.
Q: Why would the boy only do the backstroke?
A: He just had lunch and didn’t want to swim on a full stomach.
Q: What did the ocean say to the swimmer?
A: Nothing. It just waved.
Q: Why did the vegetarian stop swimming?
A: She didn’t like meets.
Moved on to snow jokes in December,
Q: What do you call ten rabbits hopping backwards through the snow together?
A: A receding hare line.
Q: What do Snowmen call their offspring?
A: Chill-dren.
Q: Which is faster — hot or cold?
A: Hot, because you can catch cold.
And then fitness jokes in January.
I went to the gym and decided to jump on the treadmill. People were looking at me weird so I decided to jog instead.
Why did the elite swimmer buy tape from the hardware store?
Somebody told her she was ripped!
Someone tried to tell me that Yoga was a good workout. I thought that was a bit of a stretch.
My favorite workout is between a lunge and a crunch. I call it lunch.
Before I knew it, anything was fair game, even Armageddon.
So what if I don’t know what Armageddon means? It’s not the end of the world.
What’s at the end of everything? The letter G.
Once I told a chemistry joke. There was no reaction. (<—- That’s a joke.)
Today I was sending out information on timing at the next meet. This was the joke I adapted.
The past, the present, and the future all arrived at the swimming pool. Things got a little tense.
I realize that I sidestep the issue all the time, dancing around, skirting the elephant in the room.
It’s far easier to talk about the brindle boxer that is about to be euthanized than it is to talk about my father.
“How’s your father doing?”
Golly, how many times a week do I hear that question? It’s such a kind question, too, coming from a sincere concern for a man who touched so many lives.
This road only goes in one direction, I want to tell them.
But I don’t.
Usually.
He’s having more trouble with incontinence, I think to myself, but don’t say.
That’s not the kind of thing one talks about in the lobby of the gym or the checkout of the grocery store.
He needs help getting dressed.
He’ll spend ten minutes scraping an empty bowl after lunch; he can’t stop himself from pursuing every last bit of soup that may remain.
He spends hours at his dresser, rearranging his military insignia and lapel pins and tie bars.
He has taken to sorting cards. At first I thought he was playing Solitaire, but it’s actually a sorting exercise and I marvel at the way he pushes himself.
He’ll have half a dozen books piled on the tray table next to his chair, but he’ll still scan the bookshelves and pull off another with that so-many-books-so-little-time mentality.
Even though he can still read, I don’t think he gets the sense of what he’s reading.
His favorite book to read: The Oxford Dictionary.
The dictionary that his father gave him before he went to college still sits on a shelf here. A few months ago, my father pulled it off and said to me, “We should probably get rid of this. It’s falling apart.”
But I know why he kept it all these years — and I’m not going to throw it away.
Some things you hold onto, and clasp to your heart, even though they’re old and falling apart.
“How’s your father doing?”
“He’s happy,” I tell them. “I’m so glad we can keep him at home.”
And they pat me on the arm, or look knowingly at me, and smile.
My Rabbit Room gift exchange package ready to be mailed.
I took part in the Rabbit Room gift exchange this year. Below is a letter for the person whose name I drew.
Dear Rabbit Room Gift Exchange person,
I am so so sorry.
Spoiler alert: I bought a Baseball Hall of Fame cap for you. Since I live in Cooperstown, the home of the Baseball Hall of Fame, I included some something from there with my RR gift. I know, there’s nothing rabbit-y about the Hall of Fame, but it’s a little piece of me. Cooperstown is where I live and the Hall of Fame was my first job. There’s some more rabbit-y stuff in the box, too.
The baseball cap sat on the piano in the living room blithely waiting to be wrapped and mailed.
The other morning I went to check on my father. He has some dementia. From the dining room I could see he wasn’t in his chair. When I went in, I found him by the piano wearing your cap. It was awkwardly perched on his head because he hadn’t noticed the cardboard inserts inside the cap. He had, however, ripped off the tags and held them crumpled in his hand.
“DAD!” I fairly shrieked. You would have thought he was about to burn down the house.
He looked up at me, startled.
“No-no-no-no-no-no-no-no-no-no-NO!” I said. “That’s NOT YOURS!”
Clearly he didn’t understand what was happening as I pulled the cap — your cap — off his head. I stomped off to the coat room, found a Red Sox cap, and brought it back to him.
“Here,” I said, not very nicely, “You can wear this one all day and all night. This one is yours.”
“Why would I want to wear a baseball cap all night?” he asked innocently.
I changed the subject. “This one,” I said, waving the Hall of Fame cap under his nose, “is a gift for someone.”
He looked at me blandly.
“It’s not yours,” I said again.
“I didn’t know it was something important,” he said.
“Yes, it’s important,” I said, even though I knew in my heart that it wasn’t.
For the next hour, he brought me things and asked the same question every time.
The first was a bobby pin — “Is this important?”
Then 17¢ in loose change — “Is this important?”
A scrap of paper with a grocery list written on it — “Is this important?”
A photograph.
A book.
A garden stone with the word “SUN” carved into it.
A spool of thread.
“Is this important?”
After about the third thing, it hit me how unimportant things are.
“You’re important, Dad,” I finally told him — and was glad for the lesson that I learned.
So I’m sorry about the crumpled tags that I stuck in the cap before I wrapped it for you. They served as a reminder to me of how easily I lost sight of what is important.
Enjoy the cap. May it (and this little story) remind you not to lose sight of what’s most important.
“I’m not doing this on purpose, you know,” my father says to me.
It’s 2:30 AM. I’m pointing at his clock, the new one we got that tells the time and the time of day. Above the 2:30 AM the word “PREDAWN” appears.
My father presses his lips together and narrows his eyes. He looks like the emoji with horizontal lines for both eyes and mouth. Exasperated. Frustrated.
I’m not sure what that emoji is supposed to represent. I’m terrible at reading emojis. My children try to teach me.
“I can’t believe you used the eye-roll emoji,” one of them said to me after I, guess what, used the eye-roll emoji. I thought it was more of a shruggy-I-dunno face. But what do I know?
“You use that smiley-face?” another one asked once. I use the basic smiley — no teeth, no open mouth, just a little upward-curved line.
“What’s wrong with it?” I asked.
“I read that as a snarky-teenager-if-you-say-so face,” she said.
Sigh. I dunno.
But at 2:30 in the morning, I’m not thinking about emojis. I’m thinking about redirecting.
I have a baby monitor in my room so I can hear him when he gets up. He often gets up to use the bathroom and then goes back to bed uneventfully. And I go back to sleep, because I haven’t left the warmth of my bed.
Some nights, though, I don’t hear the squeak of the hospital bed as he climbs back in. Instead I hear running water in the bathroom and know he’s planning to shave. Or I hear the creak of dresser drawers being opened followed by the sound of the hanging drawer pull as it drops down and hits the brass plate. I know then that he’s getting dressed and that it’s time to redirect.
I climb out of bed, turn the monitor off, and head downstairs. The overhead light is on in his room, its bright rays extending under the door. Sometimes, when I open the door, I find him in the bathroom. Sometimes, he’s at his dresser. Sometimes, he’s just standing in the middle of his room, like he doesn’t know what to do next.
“I’m not doing this on purpose,” he says to me, and it breaks my heart. He knows that what he’s doing isn’t right, but he also doesn’t know what the right thing to do is.
“Look at the clock, Dad. It’s 2:30 AM. You’re supposed to be sleeping.”
“I know that,” he says.
“Can I help you get back into bed?” I ask.
“You want me to go back to bed?” he asks. What I’m saying connects, but it’s like using a corroded battery where the connection isn’t a connection because of yuck that’s in the way.
“Yes,” I reply. “You need to sleep.”
And by that I mean that I need to sleep.
But it’s too late for me.
I help him get back into bed, then go upstairs to my bed, turning the monitor back on before I climb in. The silence on the monitor tells me that he’s back to sleep. My husband’s deep breathing tells me that he’s sleeping, too.
It’s 3 AM now.
I stare at the ceiling for an hour, wishing sleep would return to me.
When it doesn’t, I climb out of bed to begin my day.
A friend sent Bud a text Sunday evening that said, “Tell Sally that I’m sorry I couldn’t stay to chat. I don’t think crying counts as chatting.”
She and I have done that dance before — asking how things are going and then watching the other’s eyes fill with tears as she tries to find words. The slow demise of a parent is not easy.
Yesterday a lady from the Alzheimer’s Association called me.
Last week, when I had been in semi-crisis mode, a nurse had called her on my behalf but she had been on vacation. Now she was back and checking in.
“What’s going on?” the Alzheimer’s Association lady asked.
I replied with a lengthy convoluted story. It was like my poor attempts at knitting when I kept dropping stitches. Over and over I had unravel a little to go back and fill in a gap.
“I’m not telling this very well, am I,” I asked. I hadn’t known where to begin the story. A month ago? A year ago? While my mother was alive?
“I’m following,” she said.
And she listened.
For a long time.
When I was done, she didn’t offer advice or even the usual perfunctory consolations. She matter-of-factly told me about the services available through her organization and offered to send me some fact sheets.
Having a stranger listen — just listen — was exactly what I needed.
I wish I could do that for my friend — just sit with her in the ashes so she knows that she’s not alone.
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.
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.
Hot Dogs and Marmalade 