Category: Alzheimer’s

Alzheimer's · Faith

Knowing My Name

Sally7 Comments
When Maggie can’t find her fish, she carries a different toy.

“You’re the lady with the dog,” a woman said to me at church the other day.

“The dog with the fish?”  I responded, half-questioning, half completing her sentence.

“That’s right,” she said excitedly.

Our dog is famous around Greene.  She carries a toy, usually a fish, with her on walks.  At Christmas, she carries a Santa.

And now I’m known as the lady with the dog with the fish.  All my life I’ve been identified by others — Dr. Pollock’s daughter, Bud’s wife, Philip’s (or Owen’s or Sam’s or Helen’s or Jacob’s or Karl’s or Mary’s or Laurel’s) mother.  It’s really okay — I kind of like being in the background.

The outdoor high ropes course at the Clark Sports Center in Cooperstown.

Yesterday, Mary did an outdoor high ropes course.  She said, “There were two rules.  The first was that you couldn’t call anyone ‘Hey, you’ so we had to learn everyone’s names.  If we couldn’t remember their name, we were supposed to ask them to tell us again because it’s disrespectful not to try to learn someone’s name.”

“What was the second rule?” I asked.

“I don’t remember,” she said.

When we visited my mother at the Manor, she was still in bed.  It was 11 AM.

“She’s being a stinker,” the nurse told us.

“Hi, Mom,” I said as I entered her room.

She turned and looked at me.  “Oh, hi,” she said.

“Are you going to get up today?” I asked.

“Not yet,” she replied.

“Do you know who I am?” I asked.

“Yes, I know who you are.”  She smiled at me.

“Okay, then,”  I challenged, “who am I?”

“You’re Sally.”

What a sweet little pleasure to realize that she still knows my name!

She knows my name.  I’m not the lady with the dog, or the one with a bunch of kids.  She knows my name.

Alzheimer's · Faith

My Inner Porcupine

Sally24 Comments

One of the most precious lessons I have learned (and am still learning) from my mother’s Alzheimer’s is not to take things personally.  I have such a tendency to do that!  When people say or do little things, and sometimes big things, that are mean or hurtful, I dwell on them.  With my mother, when she scolds or is angry, I just tell myself that it’s her illness talking.

The other day, I found myself doing it again — focusing on someone’s hurtful words and actions.  The thing is, other people may not have an Alzheimer’s problem, but they have a human problem.  We are all so painfully human.  Just as I excuse  my mother with her Alzheimer’s, I need to excuse others because they are just people.

Grace, grace, grace — so abundantly given to me, I should be able to share it.

There’s a porcupine within me
That bristles up at certain things
And I cannot quite control it
Or the turmoil that it brings.

When frightened, angry, hurt,
The little spears come into play,
And they prickle and they stab –
They make people move away.

Sometimes life is lonely,
With this porcupine inside.
Sometimes I don’t like me,
And I want to run and hide.

Why can’t I have a bunny
Hiding inside me?
With long soft ears and fluffy tail,
Huggable as can be.

Why can’t I have a puppy
Hiding there instead?
With wiggles, fun and energy –
A thing no one would dread.

But no, I have a porcupine
That I must learn to keep,
And the lessons that he teaches me
Are hard and sometimes deep.

But the lessons that I learn,
Painful though they be,
Help me to grow in grace, grace, grace –
And become a better me.

Alzheimer's · dementia · family

Orange Ice Dessert

Sally9 Comments

The other day I walked into the kitchen at lunch to find my mother sitting at the kitchen table with some hot dog buns, a jar of marmalade, a brick of cream cheese, and some leftover chili.  She was making sandwiches.

The process was as follows:

  1. Open the hot dog bun.
  2. Spread a thin layer of cream cheese on it.
  3. Add a thick layer of orange marmalade.
  4. Spoon cold chili on top of the marmalade.
  5. Close the bun.
  6. Put it on a serving platter.
  7. Repeat.

“What are you doing?” I asked.  A dumb question, I know, but sometimes things just pop out of mouth when I’m astonished.

“Making lunch for the boys,” she replied, remaining steadily on task.

“Elinor, what are adding now?” my father asked.  She was at the chili step.

She glared up at him.  “I’m adding hamburger!” she fairly shouted.  How dare he question her! “This is my hamburger and  I want to add it!”

My father and I looked at each other and decided not to question this process any further.  There were, after all, only four hot dog buns, so the sandwich factory was self-limiting.  Just in case, however, I made sure other bread products were safely put away.

She sat down and ate two of her own sandwiches for lunch that day, but there were no other takers.  My father made himself a bologna sandwich.  He’s become quite self-sufficient in the kitchen.

My mother used to be a wonderful cook.  I need to remind myself of that as I throw away the concoctions she now makes. However, the heat wave affecting many of us this week reminded me of my mother’s wonderful summertime dessert called Orange Ice Dessert.  It is cool and refreshing.  One of my brothers has a July birthday and this was what he usually had instead of a cake.  Here is the recipe exactly how she had it written

Orange Ice Dessert

  • 6 oranges  (3 cups juice)
  • 1 lemon  (1/4 cup juice)
  • 1 cup sugar
  • 1/2 pint whipping cream
  • 1/2 cup chopped pecans (or more if desired)
  • 1/2 cup sugar

Mix orange juice, lemon juice and sugar well.  Pour into a deep freezing pan (loaf type).  Whip cream.  Add sugar and pecans.  Mix well.  Spoon whipped cream mixture on top of juice mixture and freeze.

Additional comments:  Wonderful make-ahead summer dessert — very refreshing.

My kids don’t like nuts, so we don’t put the nuts in.  Or we make two pans, one with nuts and one without.

I may run out this morning and get some orange juice so I can make this.  Then I can add a picture.  And enjoy one of my favorite summertime treats.

Either that, or some hot dog buns and chili so I can try her other recipe.  Or not.

Bon Appetit!

Alzheimer's · elderly · family

Disorganization

Sally4 Comments

Lest you think I am picking on my mother later in the post, let me start by listing for you just a few of the things on my desk right now that I can see with moving anything.

  • a pack of gum
  • a golf ball
  • headphones
  • a highlighter pen
  • two pairs of scissors
  • “Amistad” DVD
  • a Webkinz code
  • a Staples easy-rebate receipt
  • my cup of coffee
  • a letter Mary wrote to her Compassion child
  • Christmas labels
  • an empty CD case
  • an SD card
  • a silk Gerber daisy
  • folders filled with papers
  • two 3-ring binders
  • my laptop
  • much, much more!

Why should I ever buy an “I Spy” book or an “I Spy” game when I have a desk that looks like this?  Can you find all the things I listed?

Yesterday, when I was at my parents’ house, I went in the laundry room to see if anything needed to be washed.  The bin above the washer caught my eye.  Usually, this was where cleaning rags were kept, but lately other things have been showing up there.  The kitchen towels, which used to be kept in a drawer, are almost always in this bin these days.  But yesterday, there was even more.

I started taking things out, just to see what all was there.  Here is what I found:

  • rags (expected)
  • bags – plastic bags from the grocery store and used zip-loc bags (sort of expected, but I have to ask, does anybody else’s mother wash zip-loc bags?  Mine has for years.)
  • several ShamWows (purchased at the state fair after my parents were wowed by that demonstration.  Have they ever used them?  I don’t know…)
  • dish towels (expected these days)
  • paper placemats (spilled upon in several places, but once quite pretty.  I threw them away.)
  • styrofoam cups (Where did these come from?  Why are they here?)
  • a pretty bowl (This does not belong to my parents.  Somebody brought them food in it.  Usually it is sitting on the counter with the rest of the dishes that don’t belong to them.)
  • Bounce fabric softener sheets (sort of expected.  At least it’s in the laundry room.)
  • loose kleenex (these are everywhere in the house.  Fortunately, they did not go into the washer or dryer.  From my experience, kleenex does not wash well.)
  • a stretched out glove (this would not fit anybody that I know.  I threw it away.)
  • pieces of a broken plate in a plastic bowl (less than half of a stoneware plate, so I threw it away.  Even if we had the whole plate, would we have glued it back together?  I don’t think so.)

As I was taking all these things out and shaking my head over them, I thought about my desk at home.  Any sane, normal person could start pulling things off my desk and saying, “Where did this come from?  Why is this here?”

I think the difference is — and this is an important distinction for those of us who wonder if the same thing is happening to us — that this is a fairly new behavior for my mother. When I was in 3rd grade my desk was such a disaster that my teacher, Miss Bliss, dumped it out in the middle of class to my horror and embarrassment.  It made an impression on me, but it didn’t fix the problem.  My desk in college was cluttered, and my desks in my homes have been cluttered.

And the really weird thing is, I usually know where things are.  I know right where to find a paper clip on my desk because I watched the box spill.  I just haven’t picked them all up yet.  I know there is a check I have to give Bud to sign.  It’s in the pile to my left, either underneath or on top of the two library books that don’t have to be returned for two weeks.

My mother has always washed and saved zip-loc bags.  That doesn’t worry me.  It’s the fact that she no longer puts them in the same place. It’s this new disorganization that concerns me and reminds me that she is no longer in full possession of her faculties.  If the person who owns that pretty little blue bowl ever shows up looking for it, I wouldn’t know where to start looking.  In the workshop?  In the bathroom?

My mother no longer understands where things go.  It makes life hard for my father.

Maybe if I get Alzheimer’s, I’ll get neater.  My desk will be organized. My husband and children will scratch their heads in wonder because it will look tidy.  But I won’t know where anything is.

Alzheimer's

Laughter, Strength, and Dignity

Sally2 Comments

I really needed a Bible verse the other day when I was feeling very frazzled.  One of the verses that came to mind was this:

Proverbs 31:25

She is clothed with strength and dignity;
she can laugh at the days to come.

So when I read the “Talk Back” question on Women of Faith’s site, asking, “If they made a movie of your life, would it be a comedy, tragedy or drama?”  I immediately thought of this verse.  This chapter of my life is definitely a comedy.  It’s a tragic comedy, but, still, overwhelmingly, it’s a comedy.  Really!  If I couldn’t laugh at some of the ridiculous situations involved with someone with Alzheimer’s, I would end up crying.  Constantly.

And when I cry, because I have a fair complexion, my skin gets very red and splotchy, and I look horrible.  Most of the time, I don’t care a whole lot about how I look.  I rarely wear make-up.  My hair is what it is.  My clothes are t-shirts or sweatshirts and blue jeans.  But I really don’t want people to see me when I’ve been crying.  So I try very hard to laugh at the days to come.

What funny thing will happen today?  Already, my mother has put her cereal in her coffee and commented on the ridiculous prices in the sales flyer from Boscov’s.

“$6.99 for neckties!  That’s ridiculous!” she said.

“How much would you pay for a necktie, Mom?” I asked.  I’m never quite sure what decade or even century she is in at the moment, and I look for clues so that I can figure it out.

“I wouldn’t pay more than $3 or $4 for a necktie,” she answered.

What decade is that? I wondered.

She continued.  “I wouldn’t go into one of those high class joints.  Other ones look just fine.”

My mother always has liked a bargain.  Some things never change.

The other half of the “Talk Back” question was “Who would you want to play you?”  Most definitely Lucille Ball.  I want someone who can stomp grapes and stuff candy in their mouth and wail.  I feel like wailing and bawling Lucille Ball style quite often;  I just show a little more restraint.

But wait — the other half of the verse says I must be clothed with strength and dignity.  Life with my mother can be anything but dignified.  She has forgotten basic proprieties in so many areas of her life — eating, bathing, dressing herself.  I need to remind myself that I am the one who must be clothed with strength and dignity.  It’s only when I am properly attired in these that I can help her.  On frazzled days, when I miss my quiet time, I really see the truth in this.  Strength and dignity are not things I have mastered, but, for the sake of the movie, let’s pretend I have.

Hmmm… an actress who represents strength and dignity.  Audrey Hepburn immediately comes to my mind.  I love her in Roman Holiday.  She is beautiful, strong and dignified — except, of course, when she is smashing a guitar over somebody’s head.  If you haven’t seen the movie, find it, watch it, and you’ll understand.

I’m sure with all our computer technology these days, someone can take Lucille Ball and morph her with Audrey Hepburn.  You’d have it!  The Proverbs 31:25 woman and the person I would like to play me in the movie of my life.

Alzheimer's

“They were young once. They fell in love…”

Sally8 Comments

A number of years ago, I was able to accompany my father on his trip to his hometown.  He was meeting with his siblings and their spouses to inter my grandparents’ remains.  My mother was planning to go with him, but got sick just before they were supposed to leave.  I filled in for her.

I had no idea what a special trip that would turn out to be.  We went to the cemetery and sat on a little knoll while my father and his brother and sister reminisced about their parents.  They each shared memories of how their parents had made their house a home.  They talked about my grandmother making elaborate Halloween costumes for them, her competitive side coming out, so that they could win the town’s contest.  They talked about their cousins and their pets and their school and their growing up years.  Then my uncle said something which I will never forget.

He said, “They were young once.  They fell in love.  They had dreams and passions just like we do.”

I don’t know why that was so profound, but it hit me squarely in the heart.

My grandparents were old the whole time I knew them.  My grandmother had Alzheimer’s.  She smoked and drank martinis.  I have seen her wedding picture and she was once beautiful.

My grandfather had Guillain-Barre syndrome in the late 70’s or early 80’s, I think. (Perhaps one of my siblings has a better memory for these details.)  It transformed him from the robust, fun Grampa that I loved to go see, to a weak man confined to a wheelchair.  I have wonderful earlier memories of him throwing the Hollywood brick (it was made of foam) at us, and tricking us every time with it.  In fact, I think we all (the grandchildren) wanted that brick when they were emptying out the apartment, but no one seems to know where it went.

Unfortunately, my mind doesn’t always go back to good memories.  Why these memories?  My grandfather weeping in a wheelchair when I came to visit when I was pregnant with Philip.  My grandmother smoking and sniping.

“They were young once.  They fell in love…”  I chose, then and there, to replace my memories with happier ones.

Yesterday, I caught a little glimpse of that with my mother.  We were sitting at the table, with a full plate of marmalade sandwiches.  She had made ten or so before I got there — for the others.  She looked up at a window ledge, and asked my father, “What’s in that vase?”

Now, you need to know that my mother has always a way with plants.  Her home was filled with them.  She had the most beautiful Christmas cactus I have ever seen.  She would take little pieces of the Christmas cactus, stick them in a cup of water, wait for them to send out little roots and then move them to pots.  She started so many plants that way.  And the house is still littered with pieces of Christmas cactus stuck in water.  That’s what was in the vase.

My father looked up at the milk-glass vase with the sad little piece of Christmas cactus drooping over the edge. “Well, that’s a genie in a bottle,” he said.  “If you rub it, he’ll come out and grant your wish.”

My mother giggled like a schoolgirl.  She looked at him and smiled.

When he left the room, she said, “I’m so lucky I found him.”

Oh, Mom, you have no idea.

“They were young once.  They fell in love…”  She was back to that point in her life.  I want to remember her that way.

********************************************

This picture is from Christmas 1981.  I chose it because it’s one of the few pictures I have of my grandparents.  That’s them in the front row.  I love the fact that my grandmother reached over and put her hand on my grandfather.  They were in love still.

Alzheimer's

Coffee

Sally4 Comments

I read somewhere the other day about the health benefits of coffee. Supposedly, coffee drinkers have lower incidences of everything from strokes to diabetes to dementia.  The dementia part caught my eye.  My mother has been (and still is) a die-hard coffee drinker.  Coffee doesn’t seem to have helped.

My mother used to tell me that it was part of her job as a floor nurse to make the coffee.  People liked her coffee, and always complimented her on it — and that was before she started drinking it.  She must have started drinking it before she got married though, because one of their wedding gifts was an electric percolating coffee pot.  This was eventually passed down to me when Mr. Coffee came to live in their kitchen.

I never really mastered the art of percolating coffee.  I think I always ground the beans too finely because there were often grounds in my coffee.  Plus the whole thing was a pain in the neck to clean.  There was the tube and the basket and the basket lid that I could throw in the dishwasher, but then I had to wash to rest by hand, carefully, because it was electric.  I’m not sure what finally became of it.  It may be in a box in the shed.  I have a hard time throwing things away.  But I digress…

Even though they had a coffee maker, my parents have always liked instant coffee.  I hope my father bought stock in Folgers because he has certainly invested a lot in that company otherwise.  Even today, if I brew a pot of coffee, I make instant for my mother.  At my sister’s house, where she has one of those K-cup coffee brewers and there are dozens of flavors to choose from, my sister makes instant for my mother.

“This coffee is so bitter,” she’ll say if you give her anything other than instant.

Coffee is one of the few things that my mother can still successfully make.  Sometimes I’ll arrive at the house and find 6 – 8 mugs sitting on the stove all with their one little spoonful of Folgers in them.  She is prepared. For the others.

The others are not unlike “The Others” from Lost, the television show.  These mysterious people are always lurking somewhere that I can’t see.  They move things around.  They tell my mother to do things.  They expect large meals.  And coffee.

The other day when I was there, my mother went to the kitchen to make coffee.  She got out two mugs, then turned and asked me if I wanted coffee.

“No, thanks,” I replied.

My father, who had also followed her into the kitchen, said, “And I don’t care for any coffee right now either.”

“Okay,” she answered, as she spooned Folgers into each of the mugs.

“Did you hear me, Elinor?  I said that I didn’t want coffee right now,” he repeated.

“Yes, I heard you,” she said, as she poured water into both mugs.

“Then who is that other cup of coffee for?” he asked.

“The others want coffee even if you don’t,” was her response.

I sighed.  I knew it was just another cup of coffee I might find in the cupboard or the refrigerator or the freezer or on the counter or on a table.  The others like to put their cups of coffee in strange places sometimes.

So, yeah, coffee is supposed to reduce the risk of dementia.

Just for fun, I did my own bit of “Google research” this morning.  Each of the search terms were put in quotations — because that’s about all the technical savvy I have when it comes to searching on the internet.  Here are the results:

“health benefits of coffee” yielded “About 117,000 results (0.12 seconds)”   Obviously a lot of people are talking about coffee these days.

“health benefits of marmalade” yielded “1 result (0.08 seconds)”  That one result looked remarkably spambottish, with just a whole bunch of random terms strung together.  I was lucky enough to hit one.  I’m guessing there may not be a lot of health benefits to marmalade.  I’m not going to tell my mother that.  She likes marmalade too much.

“health benefits of mud” yielded “About 7,470 results (0.14 seconds)”  This was meant to be my control, but I didn’t think about the fact that mud baths are quite in vogue, and apparently quite healthy.

“health benefits of brussel sprouts” yielded “About 5,770 results (0.18 seconds)”  I hate brussels sprouts and was hoping these would not come up healthy, but apparently they do have some health value.

“health benefits of broccoli” yielded “About 28,100 results (0.13 seconds)”  I love broccoli and was happy to see that it ranked higher than brussel sprouts.

I did one last search term before I ended my little exercise.  Now this one, I wish my mother had been aware of.  No results found for “health benefits of liver and onions” Apparently even spambots don’t like liver and onions.

Time for me to pour one more cup of coffee.  I need those health benefits.


Alzheimer's

The Twilight Zone

Sally4 Comments

(This was originally published on Facebook on July 9, 2010)

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.