Alzheimer · Alzheimer's · dementia · elderly · family · Leaning In · Life · Writing

The Feeder’s Table

This is a draft written February 6, 2015, pulled from the draft folder because of the RDP prompt word: tame


From across the room, I heard the man bellow, “NO!”

I had no clue what this was in reference to — he was across the room, after all, and I was attending to my mother in the midst of her ritual folding and unfolding of her mealtime protector (aka – bib) while waiting for the food to arrive.

A woman at his table shouted out, “SNOW!” It was snowing out.

She laughed at her rhyme, a dry cackle-y laugh, not because she was a witch, although it did make me think of one, but because she was very old and shriveled, and even her laugh bore witness to that.

“He said, ‘NO,’ and I said, ‘SNOW,'” she said gleefully, and it reminded me of the little “jokes” that first- or second-graders make, when the littlest thing sends them into gales of laughter.

However, the jokesters were across the room, while my mother sat at the feeder’s table, a table set aside for residents who need assistance with eating. She dines with five other ladies with dementia.

To my mother’s left is a dear lady that reminds me of a sparrow. Her voice is quiet and sing-songy. Sometimes she makes sense and sometimes she doesn’t, but I always have to listen very closely when she speaks. (Professor Trelawny)

Next to Sparrow is a woman with a chiseled angular face. (Professor McGonigle) She never speaks. She sits erect and stern, like a statue of a school matron staring across her desk at a wayward student.  However, I had met her many years before, when she was an OB nurse. She had come into my room after I had given birth to somebody because she wanted to tell me about my father.

“I remember your father’s first day at the hospital,” she said. “He came in toting a little black doctor’s bag. A little black bag!” She laughed when she told me the story, and her eyes twinkled with the delight of that memory. My father still has that black bag with its stethoscope, reflex hammer, otoscope, and other doctorly treasures.

To her left sits a white-haired lady whose dementia has a Dr. Jekyll-Mr. Hyde effect on her.  (Quirinius Quirrell) One minute she is sweet and the next she is spewing venom.

Next to Mrs. Hyde sits the newest diner at the feeder’s table. I’ll come back to her.

To Newby’s left is Mrs. Tiggywinkle, so designated because of her hedgehog hairdo.  Teens pay a lot of money and use a lot of product to get hair like hers, sticking straight up all over her head. My father has to repeatedly request that my mother’s hair get combed. Some of us are just stuck with wayward hair that no amount of combing can tame, and I suspect that’s the case with Mrs. Tiggywinkle.


The draft ended and I never finished it. I don’t remember who the person I called Newby is, so I can’t come back to her now. I don’t even remember the point of this story.

My mother died 9 months later.

Reading drafts and posts from that time in my life are interesting to me. I’m glad that I chronicled the journey.

Advice to anyone going through a stressful time: Write down what you see and hear and feel. It’s a gift to your future self.

dementia

The Onset of Dementia

Recently a friend asked me, “What was the first sign of dementia with your mother?”

I knew exactly when it was. I wrote the whole story years ago in a post called, “Six Ways to Anywhere.” The gist of the story is that my mother, who never got lost, who had a Rand McNally Atlas lodged in her brain, couldn’t find her way back from the Post Office one day. That single event suddenly shed new light on so many other smaller things that she had done.

Yesterday, when I read what our President had said in response to James Mueller’s death — “Good. I’m glad he’s dead.” — brought me back to another moment in my mother’s dementia. We were at a concert in which one of my daughters was singing. It was in a large church. We settled into a pew with a good view of the stage. Another family was already seated in front of us. A few minutes later, they were joined by an obese woman who settled right in front of my mother. My mother turned to me and said in a loud voice, “THAT WOMAN IS FAT! FAT FAT FAT!” I cringed inside and wanted to leave.

It was her dementia talking. With dementia the filters for what is socially acceptable deteriorate. My mother would never have said that ten years prior, but she said what she thought regardless of propriety.

Our president continues to grow more and more crass and abhorent in what he says. I think he had a modicum of propriety in his first term, but it’s gone.

When we used to ask my mother about something, we knew that she could no longer recollect what that something was when she would say “the others.” “The others” did things, took things, were arriving for dinner, had left earlier that day — whatever she started talking about and we questioned her on because it didn’t make sense became the fault of “the others.”

When our president is asked about something that he spoke on the day before and it turns out not to be true or accurate, he defaults to, “I don’t know anything about that.” Honestly, the more I hear him say it, the more it reminds me of my mother and her dementia responses like blaming “the others.”

My father, in his dementia, would be up in the middle of the night — not typing posts on social media because he didn’t do that — but going about his day. Something isn’t right when times of day are mixed up like that.

I sat with my father multiple times for the cognitive screening. He was a smart man and passed even though I had seen in him signs of dementia.

In 2016, shortly after Trump became president, we were in the Emergency Room and the nurse asked my father the orientation/cognitive screening questions: Do you know where you are? Do you know what day of the week it is? Do you know who the president is? He answered the first two easily. For the third question he replied, “I refuse to say that awful man’s name.”

My father could ace the longer cognitive test, too. I watched him do it. He was given it multiple times because we knew something was going on. The first time he failed the clock part (draw a clock), his doctor looked up at me and our eyes met. She didn’t need to say anything. I knew.

With my mother, my father had a hard time initially acknowledging that she had dementia. He loved her. He wanted her to be whole. Finally it reached a point where, for her safety and the safety of others, something needed to be done.

Dementia is a sad, sad thing. I wouldn’t wish it on anybody.

However, spending time with people traveling that road makes one more aware and sensitive to those signs.

The people who are closest may not see it. They don’t want to see it. They truly love the person.

Forgetting or confusing names — like Greenland and Iceland — are a sign. Falling asleep in the day and being overly active at night — that is, confusing night and day — are a sign. Rambling, unable to focus or stay on task — these are signs.

“Good. I’m glad he’s dead.” — Those are not the words of a healthy human being. It’s a sign.

Alzheimer's · dementia · poetry

Remember That Dress?

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?


This is in response to Sadje’s “What Do You See” prompt. #Whatdoyousee

She posted the photo above, and this was the poem that grew out of it.

Faith · photography

New Every Morning

“I hurried over so you could take a picture,” said Matt, the lifeguard who was taking over for me so I could home.

Two weeks of working together and he’s got me figured out. How many times has he heard me say, “I need to get a picture of that!” Or, how many times has he seen me grab my phone out of the office so I could snap a shot of the sunrise.

I told someone at Hutchmoot that I was practically giddy over the prospect of working at this job, and that hasn’t changed since it started.

Leaving the house at 5 AM to lifeguard for two hours every morning has been fun.

And stimulating. Adult conversation is such a treat.

The sunrises aren’t bad either.

I arrive in the dark. This morning I stood, looking out from near the pool, and snapped a grainy picture. The white dot in the distance is a lighted lamppost.

Since the pool was redone, it has a wall of windows facing east. The lights are always on in there. In the darkness, the pool area fairly glows when I arrive.

Of course, when working as a lifeguard, I’m not staring out the windows. I’m scanning the pool, in case any of those early morning lap swimmers need help. So far the only help anyone has needed is turning the music down or alerting maintenance that the hot water isn’t working in the showers.

But I love my co-workers. They are such interesting people. And we converse in complete sentences.

I’ve tried explaining to people how being a caregiver for someone with dementia is like taking care of a toddler. Anyone who has had children knows the stage of incomplete conversation. That’s how it is with my father these days. That, or trying to guess what he’s trying to say, or trying to follow the tangents that his mind travels down.

Right around the time I’m getting ready to go home — I can only really afford two hours when I know he’ll be sleeping — the sky is changing.

One day last week, I tried to take a picture of it, but the pool reflected back off the glass and gave me this shot.

So this morning I went from window bay to window bay trying to find a place that didn’t reflect the pool.

“Just step outside,” said one of the other guards, so I did.

Golly, it was pretty.

I stopped again just beyond the pool on my way home.

I wondered if there was a liturgy in Every Moment Holy for the sight of a beautiful sunrise.

Then I realized I already knew one, and recited on my way home —

But this one thing I bear in mind,
and therefore I have hope:
The steadfast love of the Lord never ceases;
His mercies never come to an end;
They are new every morning;
Great is thy faithfulness.

Lamentations 3:21-23

elderly · family

Four Questions

This post was originally written in April 2011 when my mother was still alive and still at home. img_1181

Question #1
I asked my mother one day,  “Mom, do you know what Alzheimer’s is?

She knew.  “It’s a condition where people can’t think sensibly,” she responded.

It was a good answer.  Alzheimer’s is not a condition where someone simply doesn’t think sensibly.  They can’t.  And yet, sometimes, they can.  Like being able to answer that question with a pretty concise response shows sensible thinking.
Question #2
Yesterday my mother handed me a sheet of address labels with her name and address printed on them.

“These are for you,” she said.

“I can’t use these, Mom,” I told her.  “They have your name and address on them.”  I tried handing them back to her, but she pushed them over to me again.

“That way you won’t forget me,” she replied.

I felt a little ache in my heart at those words.  “Mom, I won’t forget you,” I reassured.  “Will you forget me?”  I asked it, even though I already knew the answer.

“Oh, no,” she said.  “I’ll never forget you.”

But moments later, she forgot that she had even given me the address labels and took them back to her pile of things.  She removed one and stuck at the bottom of a note she had written herself about dinner with a friend — a dinner that had taken place months or years ago.  She had forgotten.  But she stuck the address label on the bottom of the note.

“This will help me remember,” she said.  Oh, if only it were that easy.
Question #3
Alzheimer’s is a condition where people can’t think sensibly.  The varying pieces of information that are coming at us and constantly being filtered in our mind are no longer being filtered correctly.  It’s impossible for a person with dementia to make sense of it all.

One day we were going through some clutter and my father picked up a kitschy dog made out of golf balls.  “We could probably get rid of this,” he said.

Are you going to get rid of me?” my mother asked.  With the filters missing, that was what she heard.

“You’re too valuable,” he told her.  “We’re not going to get rid of you.”  It was the perfect response.
Question #4
So many people have shown kindness to my mother.  Total strangers, long-time friends and family members have all pitched in to keep her safe and to make life easier for my father.  I know my father appreciates it, but I often wonder if my mother is even aware.

Yesterday, she answered that unasked question.  Are you aware of all the things people do for you?

She was looking for my brother.  “He’s up at his house, Mom, right next door,” I told her.

“That’s right,” she said.  “He has been so nice.  Every night he brings dinner right down to us so I don’t have to fix anything.”

Yes, he does. And I’m so glad you recognize that.  Even if you don’t always recognize me.  I know it’s because you can’t think sensibly.

Faith · family · flowers

Christmas Flowers

img_1016On Sunday the pastor announced that anyone who wanted Poinsettia or cyclamen was welcome to take plants home. The front altar had been filled with plants for the holiday season — so, so lovely.

The cyclamen on the piano had caught my eye. It was looking droopy and sad, kind of worn out. I understood how it felt.

We are invariably among the last to leave. Bud loves to visit with people and I try to wait patiently (albeit awkwardly). I watched plants leave the sanctuary, one by one, but so many still waited to be adopted. The cyclamen on the piano drooped even more. I  grabbed it and a poinsettia to take home before we left.

For my mother — you know? She loved plants. When she was alive, she always had Poinsettia at Christmas. Her Christmas cactus burst into bloom on cue with the season, as did her Crown of Thorns at Easter. It was magical.

Here is part of  a post I wrote nearly 5 years ago:

At the tower of Babel, God scattered the languages of the world, “so that they may not understand one another’s speech.” (Genesis 11:7)  But He left us some universal languages.

Music crosses cultures and generations.

Art speaks and moves me, though I may know not a word in the native tongue of the painter.

And flowers — God Himself uses this language to speak to us through their beauty.

Flowers may have been the language my mother understood best.  She worked tirelessly in her garden, weeding, tending, making it beautiful for all to enjoy.  Inside the house there was always something blooming — Poinsettia, Christmas cactus, Amaryllis, the crown of thorns, Easter lilies, mums.  She understood the language of the flowers and plants, and they understood her and responded.

As my mother descended into dementia, the plants in the house looked more and more sickly. Nearly all the plants eventually died. Her huge Christmas cactus and Crown of Thorns are gone.

As I left the sanctuary on Sunday holding my sad cyclamen, Bud noticed a healthy one in the vestibule. “Do you want this plant instead?” he asked.

“No,” I told him. “I want to try to revive this one.”

It’s amazing what a little water and sunshine will do.

img_1030

I used to tell myself that I had a black thumb and that I could never grow plants the way my mother did, but I understand better now. It’s not the color of my thumb, it’s the care and attention.

It holds true with plants.

It holds true with people.

dementia · Faith · family

If You Say So

The following is an edited version of a post first published on January 2, 2012. I wrote it when my mother was still living at home and I was trying to help my father with her.

My sister and I can carry on conversations using just things my mother says.

For instance, my mother often says, “If you say so.”

Making the sandwich #1This is usually in response to something she doesn’t believe to be true.  Like, she’ll be preparing a meal for, say, 150 people.  (150 is her favorite number.)  I’ll say to her, “Mom, there are only going to be five of us for lunch today — You, me, Dad, Mary and Laurel.”

She’ll look at me with a look that says, I don’t believe a word of that.  But out of her mouth will come the words, “If you say so.”

It’s a phony acquiescence.  She’ll continue right on making 150 sandwiches.

Or, she’ll be getting ready for church, and I’ll say, “Mom, today is Tuesday.  There’s nothing going on at the church today.”

She’ll answer, “If you say so,” and then continue getting ready for church.

She started saying it as a cover for her memory loss.  It was easier than arguing.

The reason I wanted to start off the new year with those words, though, is because they tie in so beautifully with something else I’ve been thinking about.  I’ve been thinking about how the earthly life of Christ was book-ended with two statements of yielding.

First, when the angel told Mary she was going to have a baby, she responded with,

Behold, I am the servant of the Lord; let it be to me according to your word.

Luke 1:38

I’m quite sure there must be a translation out there that translates her words as, “If you say so,” not in an I-really-don’t-believe-a-word-of-it way, but in the way I would like to be able to say them to God. A yielding.

When Jesus was praying in Gethsemane before his death, he said these words,

Father, if You are willing, remove this cup from me.  Nevertheless, not my will, but Yours, be done.

Luke 22:42

Can’t you just hear the “if you say so” in there?

“Father, take this cup away from me, but, if you say so, I’ll do it.”

When God asks me to go through something, I’d like to be able to say, “Okay, God, if You say so.”

I want 2012 (and now 2017) to be an “If You Say So” kind of year, a year of yielding to the Father’s will.  I want to be like Mary and Jesus,  who, facing trials and uncertainty, still trust God’s overarching plan.

However, I want to be sincere in my words — not like my mother  just saying words to smooth things over.

If you say so.

Simple words from a person with Alzheimer’s.

Words also to live by.

A to Z Blogging Challenge

X

Χ 

marks the spot.

My mother would sometimes say, “That hits the spot.”

Hot soup on a cold day. Ice cold lemonade on a hot day. Lasagne with garlic bread and a fresh tossed salad on any day.

I’m pretty sure it’s the same spot.

The one marked by “X”.

The one identifying the location of the treasure, which, as it turns out, may be food.

Contentedness as seen in the perfect food for the day became more common with my mother’s Alzheimer’s.

Or maybe she was just more verbal about it.

So many things were confusing to her. The place. The year. The people around her.

Food, however, was and is universal.

And can be deeply satisfying.

Especially when it’s just what your body is craving.

Hence, the marmalade.

Bread and JamThe way my mother ate orange marmalade reminded me of Russell Hoban’s Francis in Bread and Jam for Francis.

“Well,” said Frances,
there are many different things to eat,
and they taste many different ways.
But when I have bread and jam,
I always know what I’m getting and I’m always pleased.”

When the world is crazy, go with the sure thing — marmalade.

It will hit the spot.

 

A to Z Blogging Challenge · Alzheimer's

Vulnerable

“Fred” made the mistake of saying the words “crew cut” within hearing of the man with the clippers.

“Everybody has a bad haircut story,” I told him. “Now you have yours.”

What made the whole thing ironic is that “Fred” had just been to a conference from which he took away the importance of vulnerability.

“Failure is an event, not a person,” he told me, repeating a Zig Ziglar quote one of the speakers had used.

“Exactly,” I said, pointing to his head.

Every disaster, whether large or small, brings us to a crossroads. One path pretends the problem never happened and hides the challenge from all the other travelers. The other path is vulnerability and sharing the struggle.

My mother taught me the importance of vulnerability. I remember watching her after her breast cancer surgery. She had a full radical mastectomy back in the days when the plastic surgeons weren’t inserting inflatable boobs even before the radiation treatments.

Her prosthesis was external, a little mass of weighted jell that fit into her bra.

Which she got tired of and did without after some years.

My mother was not defined by her breasts.

Or her breast cancer.

She went to visit women who had had mastectomies before they left the hospital and faced the world.

“This does not define you,” she told them.

And she lived, a walking testament to life after breast cancer.

That open-ness, that vulnerability, helped me to start writing about her and her Alzheimer’s.

I think if she had fully understood, if her brain had not been fogged by dementia, she would freely given her blessing to the whole thing.

“Write about the incontinence,” she would have said. “Maybe it will help somebody else going through the same thing.”

She would laugh and say, “Write about that time when I tried to walk the two miles into town because no one would believe me that I needed to go to a meeting.” I walked with her, and Helen came to pick us up.

“Write about the funny things I said. And how you had to show me that underwear went on first, before the pants. Write about the marmalade.”

It’s not dishonoring to use tough situations so that others know they are not alone in what they are experiencing.

Quite the opposite.

It is most honoring.

I think she would be pleased.

Making the sandwich #1
Mom and her marmalade

A to Z Blogging Challenge · family

Long in the Tooth

I’ve occasionally wondered what was in the guy’s trailer by the time he got home.

He started off with an empty trailer and some debts he needed to collect.

At the first stop, he got a dirt bike because the guy didn’t have any money to pay him.

At the next, he traded the dirt bike for a horse.

When he arrived at our house, it wasn’t to collect a debt, it was to look at a pregnant heifer that my dad had advertised in the Pennysaver (<— Craig’s List of 1970). To make the story of the pregnant cow short and tasteful, my brother had been given a Holstein calf which we named Sock-It-To-Me Sunshine.

Peter and the calf, named Sock-It-To-Me Sunshine, with Shetland pony, Rosie, in the background
Peter and Sock-It-To-Me Sunshine, with Shetland pony, Rosie, in the background

It grew up.

Clearly we were not sure what to do with a calf.
Clearly we were not sure what to do with a calf.

The dairy farm next door had a bull instead of an artificial inseminator. The bull and the heifer had a surreptitious rendezvous, and voila.

So the guy showed up with a horse in his trailer. He left with Sock-It-To-Me Sunshine (in the family way) in it instead.

Goldie
Goldie

Peter got the short end of that trade. He lost his cow and I got a horse, a large Palomino named Goldie. (I think, at the time, we also had a cat named Gray Kitty and another named Black Kitty. I would say that we weren’t skilled in naming animals, but I’m not sure if a cow named Sock-It-To-Me Sunshine makes my point or disproves it.)

Goldie was large and docile. I usually rode her bareback because getting a saddle on her and then getting the girth tight enough so that it didn’t slip was beyond my strength. Sometimes I didn’t even put the bridle on but just looped a rope around her halter. She was so patient with me.

I never knew how old she was. I asked my father, but he didn’t know. He also told me, “Don’t look a gift horse in the mouth,” and I had to look up the meaning of that saying. It turns out that a horse’s age can be determined by their teeth.

I also learned the saying, “Long in the tooth,” because a horse’s gums recede as they get older so their teeth appear longer.

Goldie was not long in the tooth when we got her. She was young and healthy and brought me great joy. When I grew too busy with school activities, she went on to bring another family great joy.

My mother was long-in-the-tooth by the time she died. Not literally.

But she was 87.

I’ll never forget the young doctor meeting with us and beginning with the words, “Mom is very sick.”

Here she paused and looked slowly around the room at the gathered family members. She wanted her words to sink in.

“And she has been sick for quite a while,” she continued.

She boldly laid all the cards on the table, face up, so we could all see the hand that had been dealt.

Long in the tooth, when it comes to elderly dementia, means a deteriorating brain.

She wasn’t just losing memory. She was losing the capacity to live.

Hours. We spent hours talking about my mother’s condition. I grew longer in the tooth in those few hours than I had in my whole life.

Weight piled upon weight piled upon weight.

I felt that I would never be able to stand under all of it.

When the meeting was over, we had acknowledged a trade.

Not a horse for a cow, but a new existence by letting go of this old one.

When we got home, my sister found the health directive my mother had written years before. We had followed my mother’s wishes, and that brought peace.

In trading, sometimes you win, sometimes you lose. I think both happened that day.