Monday, December 23, 2013

the end of AAQI

Only one week left to purchase a "Priority Quilt" from the AAQI. The whole project will be ending at the end of 2013.  All monies raised go to fund Alzheimer's disease research.

Thursday, December 19, 2013

glasses part 6

So the saga of Mom's glasses continues...  I got her a third pair of glasses, exactly like the two she had. Had, as is past tense. Had as in: one pair she stepped on and broke and the other pair had completely disappeared.

I thoroughly searched her room for this missing pair of glasses. I looked in and under the heaters, in and under her bed and pillows, in all her drawers. They were just gone. Her aides and the housekeeping staff have been looking for them too. 

But now Mom has three pairs of glasses.  A local optometrist managed to solder her broken frames together. They're not pretty but they work. And miracle of miracles her missing pair of glasses were found.  They were in her neighbor's bureau, under the clothing.  How did they get there? An aide found them when she was putting away laundry. Yipee!  I was so afraid they might have slipped into a trashcan.

Wednesday, December 18, 2013

did you get the message?

When I got to Mom's today she was just sitting down for dinner.  She saw me from across the room, smiled, and waved.
"My, my daughter!" she boomed.
Wow, it's a great feeling to be recognized, she made my day.
I wave back across the room. "Hi, Mom, it's so good to see you."

Before her meal comes we look at the pile of Christmas cards that she's received. She doesn't open her mail anymore. We oooh and aaah at the cute pictures on the cards. "Slow down" she manages to say. She wants to look at the picture more carefully.  She's alert today and engaged in her surroundings.  She doesn't acknowledge all the names I read to her, but some names get a "yes yes" response.

Then lunch is served and another lady at the table starts talking to me. "Is this your mother?" she asks.
"Yes I'm her daughter."
"You are so lucky to still have your mother."
Oh my, my heart is stuck in my throat. Take a big breath and try not to cry.
I smile back at her "Yes I am."
"My mother is dead, and my father too. But you're not as old as me. Is you mother a teacher?"
"Yes, Mom was a second grade teacher.  Are you a teacher?"
"Yes, I taught kindergarten. Is this your mother?"
"Yes she is."
"You are so lucky to still have your mother."
"Thank you, I am lucky."
"My mother's dead. Is your mother a teacher? I was a teacher."
"Yes Mom taught second grade. Are you enjoying your lunch?"
"It's alright, is that your mother?"
"Yes this is my mother."
"You are so lucky to still have your mother."
"Yes I am." 

Oh no! We are stuck in a conversational loop.  But maybe this loop is carrying the message that I needed to hear today.  Maybe today's messenger is a sweet demented little old lady.

I am so lucky to still have my mother.

Friday, December 13, 2013


Today I just want share my thoughts about the importance of the activities leaders in assisted living residences and nursing homes.

Many forms of dementia remove self-motivation, the loss of executive function. People lose the ablily to initiate activity.  They can’t get out of their own way. They are lost until someone tells them what to do or where to go.

Gone is the ability to plan a meal, cook a meal, or to follow a recipe. Long ago Mom lost the ability to make the connection from "I'm hungry" to “I can go to the kitchen and find food”.  Now she can not even make the connection from “I’m hungry” to “I can ask for food”.

So the feeling of “what should I be doing” has no answer. There is just a lost feeling. There is no response coming from the brain that says: read a book, clean the house, feed the birds, go for a walk, sing, fold laundry, play the piano, work on a puzzle, write a letter, pay the bills, watch a movie, knit, whittle, call a friend, bake cookies, or make a sandwich.

Her motivation is broken.

This is why when you visit people with dementia, you sometimes see them sitting, just sitting. They are lost, there is no motivation, they don't know what to do, or how to go about doing it. They need someone else to direct their actions. We need good activity leaders.  Come for a ride.  Let's get an ice tea. Let's sing together. Let's go to worship.  Help me fill the bird feeders. Let's work on this project. Tell me about your trip to Europe. Let's play Bingo. Come fold laundry.  Let's look at your photos. Help me water these plants. Let's go for a walk. Let's go down to dinner.

We need good activity leaders. It makes all the difference.

Sunday, November 24, 2013

great grandmother

I picked up a bunch of daisies at the florist and a card. I dried my tears and put on my happy face.

"Mom it's so good to see you today."
"Mumble mumble oh oh my my mommy." she says.
"Yes, it's me" I say. "I have some happy news for you."
"Mumble bluk bluk err err err hey hey"
"You're going to be a great grand mother."
She stares at me with confusion and shakes her head.
"You're going to be a great grand mother!" I bring over the picture of my son and his wife, exchanging their wedding vows on Mom's front steps. "Look here's SJ and SR, now they are going to have a baby. We are so happy."
"Mumble mumble ark, blub, no, you mumble"

We go out to the common area and sit. I cut her fingernails, we visit and we "talk".
"You? mub stu gur  you you  bup bup bup?"

After my visit I sit in my car and cry.
I have the most happy news in the whole world to share... and only the moon smiles back at me.

Friday, November 22, 2013

glasses part 5

Mom's aide just called. She threw her glasses on the floor and stepped on them.

They can't find her second pair. She had two identical pairs of glasses; they are always dirty, lost, broken, screw-less, torqued, lenses missing. 
Last month I had to repair both pairs.

Now I don't know what I'm going to do.  I'll try to call our eye doctor and see if they can order another pair, just like the two she had.

Mom, do they bother you that much that you don't want them on your face?  Has your vision changed so much this past year?  I really thought that you react and socialize much better when you are wearing your glasses; that you could at least see what's going on around you.  When you are not wearing your glasses - it just makes you want to curl up and zone out, detaching yourself from your environment. 

Friday, November 1, 2013

my brother sings

My brother came east to visit.  It was great to see him and have him stay with us.

The first few visits with Mom went very well. She recognized him. She was even able to connect him to that guy in some old pictures. I was amazed.

She was talkative, it was all a garbled mess, but she was chatty. She had something to say and we just blundered along in her "conversation".

He even got Mom to sing along to three songs, I was thrilled. She even wiggled her bottom a little when we were singing Gray Squirrel

Because she was in a very chatty mood, she sometimes got stuck on a syllable and stuttered around before landing on another syllable.  My brother described her as talking in scat, like the amazing Ella Fitzgerald

It's not what you say - it's how you say it that's important. Our tone, inflection, and mood convey everything.

Hey Mom, I love you too, have a great day, I'll be back tomorrow.
"... hey hey hey skeep-beep-beep-beep de bop-bop-bop bo-do skeetle-at-de-op-de-day!"

Then my Brother got to see Mom on a not-so-good day. She was in her zoned-out mood. Just staring off into space.  Then she would HOWL and HOWL, uncontrollable sobbing.  What thoughts are running through her mind that make her so so sad?  What causes such heartbreaking sobs?

Oh Mom, we love you, it's all right, we're here, you don't have to cry.
"... doop de dooop de doop de dooop..."

Saturday, October 19, 2013


Bob Cousy has always been a cherished sports hero in our family of Boston Celtics fans.  This week he became my hero too.
Thank you Bob.

Thursday, October 17, 2013

AAQI quilts

One last time, the Alzheimer's Art Quilt Initiative is taking our quilts to the International Quilt Festival in Houston, Texas.  The AAQI will be presenting over 2000 little art quilts to sell, to raise money for Alzheimer's disease research.

For the third year, I am honored to have my quilts among those 2469 quilts being exhibited and sold in Houston.

The AAQI is hoping to reach it's $1,000,000 fundraising goal by the end of 2013. I believe the AAQI project has been a wonderful success. The amazing idea of one creative woman; and a lot of people working together, each doing just a little, but together, doing great things.

It is mind-blowing how many quilters, from all over the world, have made quilts for the AAQI.  It is very sad to realize, that all of us, have been touched by this terrible disease.

Not all will be in Houston. There are still many beautiful quilts for sale on-line.   The AAQI campaign/project will be ending at the end of 2013, so you only have twelve weeks left to purchase a beautiful piece of fabric art and support Alzheimer's disease research.

Here is a little quilt eye-candy. It is one Grandmother's Flower Garden block from a quilt on which I am currently working. It is all hand sewn. Don't you just love the Kaffe prints too?!


Today, Mom had the need to introduce me to one of her aides, a woman who has worked with Mom for years, so someone I know too. 

If she wants the attention of someone, she yells "hey hey hey hey." And if she can, she'll wave her hand around, pointing at them.

"Hey!! Hey hey hey hey, her... her... she's my mommy."

Well, at least I was somebody special today.

Some other days, when she's feeling annoyed or upset, she'll yell at me and call me my Dad's name.  Great to know that she can still be angry and upset at my Dad, even though he's been gone a long time.

Yes, I'm feeling snippy and snide tonight.  Sorry.

I hate this disease, I hate it, I hate it!

Wednesday, October 2, 2013

silly song

There is not much new with Mom. She continues to talk with scrambled words and have emotional outbursts.

Three of the teachers from her second grade team went to visit her earlier this week, it was so nice of them to make the trip to see her.  I was just leaving when they arrived. They were prepared for their time together: they brought photos and ice cream.  When I left them to their visit, they had just started singing a song that they use to sing with their second graders. Silly, silly song.

Of course I was crying as I left the building. It is the song I plan to sing at my Mom's memorial service. It brings back all the happy memories of my Mother the teacher.
(Here is a video of some Girl Scouts singing it.)

Tuesday, September 17, 2013

WALK to remember

As you know, I am again participating in the WALK to END ALZHEIMER'S. Each year I carry a staff strung with purple ribbons, each ribbon has on it the name of someone I know, directly or indirectly, who has Alzheimer's or some other dementia.

They are like little prayer flags.

They are reminders of why we WALK. Why we are fighting this battle.  It is not only my Mom...

Marge's Mom * Lillian * Ma * Christine's Grandfather * Ralph * Hal * Joan * Sarah's Grandmother * Kathy's Mom * Bob and Al * Elaine's Dad * Mary * Gerry * Stacey's Mom * Stephen * Lauren's dear Father-in-Law * Jackie's Dad * Barbara's Mother and Mother-in-Law * Ray * Kathy * Aunt Irma * Cheryl's Grandmother * Ann's parents * Kristi's Grandmother * Sir Terry * Dewey * Phyllis * Jean * Natalie * Trudie * Patty * Ralph * Erin's Grandfather * Pat * Mary R * Cousin Ed * Sandra's Mother * Mark's Mom * Evelyn * Debra's Dad * Joan's Dad *

Saturday, September 7, 2013

the WALK

It's that time of year again, for the Walk to End Alzheimer's:  join a WALK, join a team, create a team, sponsor a walker.  We've got to help each other.  The Alzheimer's Association has helped me, now it's my turn to help them help you.

Wednesday, August 21, 2013


I'm failing.  Mom is too.  I feel like I am failing as her daughter.

To paraphrase from another...
The real question is: How can I help Mom have the highest quality of life possible in the time that remains?

She is so lost. She is so frustrated. She is so angry.

The wall that dementia has put between us; I can't reach her and she can't reach through it.  

For most of my visit yesterday, she was sitting in a chair zoning out. I knew she was awake. She would not open her eyes to interact with me.  She was closed in upon herself, in her zone, scratching at her eyebrows, her eyes, her chin, her hair. I'm surprised she hasn't torn the skin off her face. She is so intent at scratching.

When she finally opened her eyes and looked my way. The confusion and frustration was all over her face.  The words are jumbled and messy, but the anger comes through. She couldn't put her glasses on her face. She did not want them on... on and off, on and off. They weren't providing any clarity to what she was "seeing".  

I rubbed her shoulder and talked quietly cheek to cheek, she became alert and yelled "Stop it J__!"  Well, she recognized me enough to recall my Dad's name.

Then the mumbled anger gave way to huge Tarzan type yells.  Just yelling: AAAAAAAAAAAAAAAH opened mouth and loud.  Frustration and despair.

Oh Mom, I am so sorry.
I am so sorry.

Thursday, August 15, 2013


Kay Bransford recommended these videos, and I do too.

They are made by a group called Short Focus Films. 
The series of videos is called "Is It Dementia?"

There are different segments of the series aimed at different audiences.

What I learned from watching all of these, is that we should all just take a deep breath and be more compassionate with all people we deal with. Even if the other person we encounter is just having a bad day, we can be more compassionate in our response.

These videos also remind me that it's OK to ask for assistance, we don't have to solve all problems by ourselves.

Wednesday, August 14, 2013

Tuesday, August 13, 2013

med mess

A few years ago, when Mom was living alone, she got to a point where her sense of "time of day" was messed up.  She could no longer understand what the clock said or think to look at it.  Even now she can still read her watch, she can tell me "3:30" but her comprehension of "3:30" is gone.

This really got messy because at that time she was also managing her own medications. She would have her breakfast meds with breakfast. After her nap, she would wake up and take her breakfast meds again. Later she would eat diner and take her night meds. Then she'd fall asleep in front of the tv, wake up and take her night meds again. I'm not saying this happened every day. But it happened a lot.
This was when she was living totally alone, when I would check on her every two or three days.

I tried to help her by setting up weekly pill boxes with AM and PM sections.  I would label each section "Mon June 6" hoping she could correlate it to the big digital clock in the middle of her kitchen table, right there beside the pill box.  At my next visit there would still be too many empty pill slots.

Then I took away all her extra pills and left only enough until my next visit. Hoping that the blizzards would let me return in time. Mom would call me the next day and say all her pills were gone.

Then I arranged for visiting home health aides. They would come in the morning, make her breakfast, guide her to the shower, dispense her morning meds, make her lunch for later, and set out her evening pills. I would get angry calls from Mom that she didn't have any pills. She had already taken them, but forgot.

At that time Mom was not taking any heavy-duty medications. But still, overdosing on anything is not a good thing.

Thursday, August 8, 2013


There was a post this morning from Carol Bradley Bursack about studies that point to a connection between Frontotemporal dementia and the inability to understand sarcasm and lying.  

Yes, you can add my Mother to that list. A long time ago, she lost the ability to understand jokes, puns, sarcasm, innuendo, teasing...

I'm not sure about lying, because until I had to use fiblets, I did not lie to her.  But, it's interesting, now she does yell at me and accuse me of lying to her. 
"You're my mother."
"Don't lie to me!"

Wednesday, July 31, 2013

you can call me Mariarose

What a difference from last week.
Last week Mom spewed "Hate you!! Go to hell!! Shit!! Shit!! Shit!!" for hours.
Yesterday was so different.

When I got to Mom's place yesterday, she was resting on her bed, as she usually does after lunch. Her bed is her safe place. I got her up and we walked out to the common room. I couldn't get her to go outside, through the French doors, she was too scared. "No! No! No!"  I sat her down at a table, facing away from the doors and away from the "old people" sitting in the courtyard.

We were looking at travel books of places she had visited in Europe. As I've heard all her stories before, and with the help of captions, I talk about all the places she had seen. "Oh, yes. Yes. Yes of course." she would agree. But she asks me over and over "You too? Did you come? Were you there?"  And over and over I tell her that she traveled with Dad or her cousin while I was home with my babies.

We look again at the book "Baby Love." Mom starts to cry. "I want some babies."
"You had some babies, you had two babies, they are all grown up now." She stares at me with confusion on her face.
"Don't lie to me."
 I show her a picture of my brother from his last visit. "This is your baby, EJ. This is your son EJ.  He's all grown-up now. Look at his big fuzzy mustache. Look he's hugging you, he loves you. You're the mommy and he's your son."  There was no recognition. "You lie to me." She is not buying my story.
We continue to look at the beautiful babies in the book. "I want some babies. You have babies?"
"Yes, I had two babies, SJ and DB, two boys, your grandsons, SJ and DB. They are all grown up now.  You had two babies and I had two babies."
"Are you my sister? We're sisters?" she asks again and again.
"You're my mommy and I'm your daughter."  Her face is screwed up in concentration and disbelief.
"We're sisters? Don't lie to me." over and over.
"I'm your daughter and you're my mommy."  I'm ready to burst into tears, she is so lost. 
"You can call me Mariarose."
Her face gets all soft, her eyes light up. There is an expression on her face I remember from long ago. She puckers her lips and reaches out her arms.  I go to hug her, she rests her head on my shoulder, she is peppering my shoulder with kisses and words "love you, love you, love you, love you..." she is crying.

These words, words that I have not heard from my Mother since the time "before". This was a gift from God.

"It's ok Mommy, you don't have to cry, It's ok Mommy, I love you too." I rock her in my arms and let her cry.

Tuesday, July 23, 2013


Dammmmdementia I hate you.

Today was Mom's annual wellness checkup. I arrived early so that I could ride over to the office, with Mom, in the wheelchair van.  All that walking would just be too much for her.

When I got to her room, I could hear her yelling and swearing from the shower. Two aides were doing their best to get her ready.

"Look who's here to see you." one aide says as she leads Mom out to me.
"Good morning Mom, it's so good to see you." I give her a squeeze.
"What? No! Stop smiling!! Look look, I'm. Stop it. No, go away." her nasty words are now aimed at me and not her aides. Her barrage of swears and grunts come pouring out.
"Go to hell! Shit!! Shit!! Shit!! Shit!! Shit!! Shit!! Shit!! Shit!! Shit!! Shit!!"
I start to laugh, this is NOT how MY Mother ever talked.
"Stop smiling!!" she screams.  Yes, it would be very funny except this is all coming out of her mouth at 90 decibels. The aides try to divert her with juice and calm words.
She is calling me "Mommy", she is calling me by my name, she is yelling and swearing. "Hate you, hate you."  I can't divert her with a smile and calm words, I can't divert her anger.  But I can push her in the wheel chair, out of the building, to the van. She doesn't ask where we're going, she doesn't ask why we're going.

The rain has let up, we get into the office without getting wet.  Yesterday it was 90' hot and humid, tonight it is 88' and muggy, but this morning it was 63' raw and damp.
"Cold, cold!! Coooold, cooooold!!" Mom is shaking in the van, we had to turn on the heat.

She sees the hospital campus and starts yelling "Nooooo no no no!!"

Two nurses try to get Mom to step up onto the scale. She could not get her body to go one step up, what they were asking was just too confusing. One nurse had her arm under Mom's armpit for stability. All of a sudden she spins away. "She almost bit me." the nurse is flustered. I'm mortified. "Has she done this before?" they ask, I close my eyes and nod.

Mom's doctor has always been very good about talking directly to Mom, and has always treated her with respect.  She would peek over to see which way my head was shaking to confirm or deny Mom's answers, while I sit quietly in the corner and take notes.  However at this visit, the doctor and I talk about Mom, as she sits there, as if she's not there. Mom is spouting bad words every so often or zoning out entirely. She could not answer or respond appropriately with the doctor or nurse.

"Can you lift up your arms?" the doctor asks Mom, demonstrating what she wanted. I also lift up my arms. Would Mom get the clues? No. The doctor asks again, gently touching Mom's elbow. Mom can't process what the doctor is asking.

One year since her last wellness exam. One more year of dementia, stealing bits and pieces... stealing chunks and globs... of the woman who is my Mother... leaving this angry person in it's wake.

Saturday, July 20, 2013


What is it about babies, that make us love them so much? What is it about a baby that turn us into mush? They are just so darn cute.

Some of the aides bring their little children to visit with the residents.  Often it is the only time my Mother will smile, when she is holding a baby.

She still knows the difference between a real baby and a doll-baby.  She is resentful if you try to engage her with a doll-baby.

She will not engage or interact with any of the dogs that come to visit her neighborhood, she is frightened and scared by them. Which I think is strange, as she and Dad owned a few dogs throughout the years. Mom's a cat-person for sure.

There was a new book at Mom's place, a huge fat coffee-table book of baby photographs. Lovely, large, adorable pictures of babies.  Mom and I sat, knee to knee, the book resting on my lap so she could see the pictures.  It was way too heavy to rest on her lap!  I turned the pages and we cooed and awed and talked about the babies.  I was really pleased that Mom's one word sentences were spot-on when describing the photos.  I was pleased that she could read the expressions on their little faces.


The book is "Baby Love" by Rachael Hale. 

Thursday, July 4, 2013

my super-suit

Have you seen the movie The Incredibles? It's an animated movie about two super heroes who marry and have a family of children who also have super powers. And these parents are just as regular, quirky, and as embarrassing to their kids as any other parents.

"Honey? Where's my super-suit?"

I want Edna "E" Mode to make me a super-suit.  "Simple, elegant, yet BOLD!"

My super-suit will be purple, not only because I look good in purple, but because it is the color of Alzheimer's.  My super-suit will be Teflon coated, so that the dementia-crap my Mother throws my way can slide off. It will shield my heart from the weird and nasty words that fly out of my Mother's mouth.  It will remind me that I have the power and inner strength to cope with this nightmare.

My super-suit will "breathe like Egyptian cotton... and be machine washable", just like the super-suits that Edna made for the Incredibles.

And no cape!

Tuesday, June 25, 2013


Watching my Mother eat lunch is like watching an eight month old eat. The food goes in her mouth, she chews, she moves it around her mouth, she wrinkles her face, she gives a grimace, and then she pushes it out her mouth, down her chin and all over her jersey and slacks. Then she picks the bits off her tongue and wipes them on the table.

The only difference between her and the eight month old, is that she asks before every fork or sip. "What's this?"

Nothing tastes right for her now.
All food is "gross, yuck, no, no, no, no."
"You like cantaloupe" I say "It's one of your favorites."
"No, no, no!"
Today even her favorite orange juice was not going to be swallowed!  Out it came, all over her jersey.

And her walker... it looked like it had been spray-painted with graffiti. But I think it was some of yesterday's dinner.

 "Woo-oo, mercy mercy me, ah things ain't what they used to be, oh no no..."

Monday, June 17, 2013


Yesterday, Mom asked me ten times if I was her sister. She doesn't have a sister and I don't either.  Who was she looking for?
"You're my mommy and I'm your daughter" I told her with a big cheery smile, trying to hold back my tears. She told me I was lying, each time.

Later, during my visit, when she knew who I was, she got all angry and teary because she hasn't seen me in years, I never come to visit, and nobody loves her. I hugged her tight and we both cried.

Friday, June 14, 2013

don't call me sweetie

I was talking with some friends the other day, we are all daughters who are caregivers and advocates for our mothers and fathers, our parents who live in a variety of residential communities.   Our parents, in their working careers were teachers, emergency room nurses, and business owners.  Now they must rely on other people to help them with their daily needs: bathing, dressing, feeding, and toileting.

If you call my Mother by her proper first name she immediately puts up her guard. She hates her name. She has been calling herself by her chosen nick-name since she was 17. And now, as dementia has taken hold, anyone who calls her by her proper name is the enemy.  Long gone is the cheerful retort "Oh, please call me Wxyz." 

This caustic reply to hearing her proper name makes it difficult to get her to cooperate with anyone who is trying to help her. The other day a new volunteer was delivering the mail, and of course, it was addressed to that name.
"Oh Tuvwxyz! I have some mail for you." the volunteer cheerfully said. Immediately my Mother glared and scowled at the poor volunteer.

My Mother has had the same doctor for may years, the office staff and the nurses in her office know Mom well. They have been there, through all this, seeing the changes in my Mother.  On the front of the folder that holds her medical records it says in big red letters "Call her Wxyz".

Last year, the doctor's office changed from paper to digital records. The nurse and doctor no longer carry the fat folder of papers, they use a laptop.  A new nurse poked her head in the waiting room and asked "Tuvwxyz?"  I could see my Mother's guards go up, I could see the scowl and anger on her face. Great, I thought, now she's in a defensive bad mood.
There is no place on Mom's digital medical record to write in big red letters "Call her Wxyz or else!"

So, my friends and I were talking about our parents. About the great care they receive and about the could-be-better care they receive. How other people treat those with disabilities; about respect and compassion. About the people who "get it", who understand communicating with people with dementia, and those who don't.

We all agreed on something. We don't like being called "dear", "honey", "sweetie", or "darling" and we know our parents don't like it either.  It is condescending. Like my Mom, these other parents, as they are now, cannot formulate the sentence to say "I'm not your sweetie, please don't call me that, please call me Wxyz."  They can only react with a scowl and a bad mood.

Friday, June 7, 2013

the story that I love you, it has no end

Mom and I went down to the sing-a-long. It was a long walk to the other side of the building, but she seemed up for it.  We got there a bit late and the crowd of residents was already singing.

The woman who was playing the piano comes often to Stuvwxyz to play. She even brings her own lyric sheets to pass out to the audience. She is a hoot.

Mom is no longer singing, she doesn't hum along, she doesn't lip-sync or mumble along, she is not tapping her foot or bobbing her head. She makes no sound, motions, or movements that convey any participation.

I lean in with the lyric sheets and sing to Mom, hoping that she'll join in with me. I run my finger under the words, hoping she'll join in.  But we don't need these lyric sheets, we know these songs. These are the kind of songs that she taught to my Girl Scout troop, songs that we sang together around the campfire. 

"I gave my love a cherry, that has no stone..." 
Mom perks up and yells at me "How do YOU know this song?!" Yelling at me like I had stolen something from her.
I lean in and whisper to her "You taught this song to me, you taught it to me in Girl Scouts." She glares at me.

Have I told you how tired I am, of being yelled at?

The Riddle Song:
I gave my love a cherry
That had no stone,
I gave my love a chicken
That had no bone,
I told my love a story
That had no end,
I gave my love a baby
With no cryin'.

How can there be a cherry
That has no stone?
How can there be a chicken
That has no bone?
How can there be a story
That has no end?
How can there be a baby
With no cryin'?

A cherry when it's blooming
It has no stone,
A chicken when it's pippin'
It has no bone,
The story that I love you
It has no end,
A baby when it's sleeping
There's no cryin'.

Sunday, June 2, 2013

a giggle with Mom

I am in shock. My Mother and I had a giggle together, it was amazing.

As I said last month, Mom has been in a questioning stage.  After she asks this or that question five or six times, I can finally understand what she is trying to say. But then I really don't know how to answer her.
"Were you angry that I was a teacher?"
What is she thinking that she needs to ask this question? What does she really need to know? What is bothering her?
"No, Mom. You really loved being a second grade teacher. You had lots of fun with your students. When you were at Xyz school, I was in school too, a different school."

So the question comes around again to the boyfriend. A man that Mom hung around with for a few years, after Dad passed.  He was nice, but I think he overstayed his welcome. I never had to tell Mom my feelings about their relationship because his cancer returned and he died quickly.  I think he used her, knowing that his cancer had returned, he latched onto her so that he wouldn't have to die alone.  Oh well, they had some good times together.  She can't recall his name when she talks about him now.  "I had a boyfriend" is all she can say.

So, this week she tells me, "I don't have a boyfriend."
"No, Mom, you don't."
"Do you have a boyfriend?"
"No, Mom, I don't have a boyfriend."
"Oh," she sighs "I don't have a boyfriend."
She looks at me, and says with incredulity and amazement
"We don't have boyfriends!"
"No we don't" I agree.
She starts to giggle "We don't have boyfriends."
And I start to giggle too "No we don't, oh well."
and we both giggle and laugh at our sorry plight.

(Yes, I do have a husband, Mom doesn't remember that today, but we were talking about boyfriends.)

Monday, May 20, 2013

short stories

And now for something completely different:

I enjoy listening to audio books, while I travel and work.  I have also found many pod-casts where short stories are read aloud.  Some of my favorite are the Gutenberg Project, Cast of Wonders, Pod Castle, and Escape Pod.  Some of these are predominately science fiction and fantasy literature.

My newest find is Toasted Cake.  This week Tina read aloud the story After the Earthquake by Caroline M. Yoachim.  You can read this story here.

It's a story about memories, bring a tissue.

Wednesday, May 15, 2013


I just got a phone call, from some machine, somewhere, trying to leave me an automated message, trying to sell me something.  ugh

As I walked back to the kitchen to put the phone away, I was overcome with the desire to call my Mother and have a real conversation. To chit-chat on the phone and talk about everyday things. I wanted to talk with my Mom.  What a stab in the heart that was.  How many years has it been since we've really talked together? Six? Seven? I don't know.
This is horrible.

I have had to "be with her where she is" for so long.

At first it was her being withdrawn, her self isolation, her quiet questioning appraisal at what was going on, trying to figure out how to cope and not slip up. Then it was her repeating and repeating her stories. Then it was her anger at everything because nothing was right.

In 2006 I painted Mom's kitchen: the walls, the woodwork, the inside and outside of the cabinets.  Then I stenciled blueberries around the top of the wall. It took six times around the kitchen, two different stencils and three different colors of paint. Up and down ladders, balancing over the range and sink.  This project took all summer.

As I look back on this time of painting and being with my Mom, I can now see the start of her detachment, the quizzical looks she would give me.  Like she was someone who had never seen anyone ice skate, and was watching me do it for the first time. She was the one who taught me how to paint and how to stencil.  But that summer, she stood back and watched me do it with curiosity and doubt.

Thursday, May 9, 2013


I think Mom's pain and mood medications are in a better balance.  She is walking about more easily and rising from a chair with much less agony. That is a good thing. She is a bit more cooperative with her aides, she's not as aggressive or nasty. That is a good thing too.

We look at her photos, over and over, and as we do Mom has been asking questions. Usually difficult to understand questions, but she asks them over and over, adding and removing words each time. 

Why don't I teach school anymore?
Why aren't I at school?
Were you angry/jealous that I taught school?
Where is my husband?
Where is my Mommy?
Where is my Daddy?
Why are you here?
Why am I here?
Where is my boyfriend?
Were you angry/jealous that you didn't come on this trip?
Were you angry/jealous that you weren't at this party/event?

I find it very interesting, that this is one of the few times, since dementia has crept into our lives, that she is asking about my emotions, about me.

We are looking at pictures from her trip, with Dad, to Europe. Something they did in their retirement years, at a time when I was grown and gone from the nest.  We are looking at photos of beautiful churches and castles. Why does she ask me if I was angry that I didn't get to go? Where is this kind of question coming from?

We are looking at pictures of all her girlfriends at their monthly birthday luncheons.  Her "dear friends" who still come and visit, even though she no longer recognizes most of them.  Why does she ask me if I am jealous that I wasn't at that party?  What does she really need to know?

I was always so happy that my parents got to travel in their retirement years. I was always so glad that they got connected into a group of nice folks in their retirement.  "Make new friends, but keep the old, one is silver and the other's gold."

She has also been asking about her Mother and Father. With big teary eyes, she'll ask me "Where's my Mommy?"  She knows something is wrong, but she can't recall. Her face contorts, her whole body shakes with grief. I can't divert her to another thought, to a happy place. "Tell me, tell me!"
"A long time ago, your Mommy got very, very sick, and then she had to die."
"Don't lie to me!" she yells. "Tell me the truth."
"She died a long time ago, when you were a girl, and it was very sad. We all miss her very much."
We go through this line of questioning over and over
"Where is my Mommy? Where is my Daddy? Where is my Husband?"
I can't fiblet my way out of these questions. She remembers enough, but not enough. She is full of raw fresh grief, up to the top, spilling out her eyes, no fiblet is going to sooth that.

Monday, May 6, 2013

purple perennials

Last fall when I was busy getting ready for the Walk to End Alzheimer's, the color purple was everywhere. I dyed t-shirts purple for our Walk team. I dyed my hair purple (eeep).  I put purple laces in my sneakers.

That fall I also bought 36 tulip bulbs, purple of course, and planted them.
They are now in bloom. They are beautiful.

Thursday, April 18, 2013

Dad Dad Dad Dad

At the end of my visit with Mom, she wanted to go into her room and lie down.  I helped her pull back the quilt and get under it. I put pillows under her head so she would be more comfortable.
She was yelling at me, she wanted something. "Black! It! Do it! Now! Yes, black!"  Somehow I figured out that she wanted to watch a dvd movie on her tv. (The tv is black, ah-ha!)  I started a movie. Then I went to the other side of her room, where she could not see me, to tidy up some things.

All of a sudden she started yelling my father's name. Over and over and over. Like she was expecting him to yell back from the other side of the house "Yeah, I'm over here. What do you want?"

I walked around to face her "What do you want?" I asked quietly.
She stared at me, confused by what she saw, of course I was not my Dad.

That was strange.

she's back

Yesterday's visit with my mother was horrible. Didn't I start another blog-post with that sentence. dammmmm

Since that post, last month. I went with Mom to her physician and had her medications altered. She was put on a medicated pain patch, that would hopefully ease her chronic pain, and then ease some of her anger, that may be a side effect of her chronic pain. The medication patch didn't agree with her. She became very lethargic and very shaky-twitchy.  She is now on a different pain medication that I think is working well. She was very active at my last visit, getting up and down from a seated position very easily (well, easily for her, she did it by herself, not needing two helpers.) And shuffling rather quickly up and down the halls with her walker.  And, not moaning and groaning whenever she moved her body.

However nice the lethargic docile person was to be around, she was definitely too sedated and too dopy and unable to do anything for herself. 

So... the mean nasty woman is back. She slapped me, I know she has been slapping her aides too. (Something we never did in our family.) She yelled at me for my whole visit. One third of her sentences were clear loud nasty sentences, the other two-thirds were loud nasty jumble words. She gave me the finger. (Something we never did in my house! And definitely something a second grade teacher would not tolerate!) She swore at me, in two languages, (Something also not tolerated when I was a kid.) 
"You're no longer my daughter." well that stung.
"But you're still my Mother."  I replied.

She told me to go into the hole (?) she told me to go into the black room (?)  She was SO SO angry.

"Why am I here?" Mom demanded of me. She repeated the question that her neighbor,Ten-minute-Tina asks every ten minutes
"Because you need help. You can't live by yourself."

"Yes I can! I am fine, there's nothing wrong with me!!!" she screams at me and stamps her walker up and down on the floor.

She is still refusing to take her medications, she is refusing to bathe or shower. She doesn't want to be with the other residents. She doesn't want to eat the "garbage... yuck...bla... bla.. no, no, no, no!" at meal times.

One of the aides found another of her rings, in her top drawer, sterling silver with turquoise stones.  She waves her hands at me and yells "Ring? Ungh? Ring? What ring?"  So I made an educated guess and told her she purchased it in Arizona when she was visiting there.  Then six or seven times throughout our visit she would yell at me "Ring? Hey, hey! Whose ring?"  So I repeat my story.  I recognize that ring as one of hers, but she does not remember it. And she knows it is not the ring she SHOULD be wearing on that hand. W's ring, the one that got too small.

Her doctor's aide called me today, they are adjusting her mood stabilization medication. We'll see.

Wednesday, April 10, 2013


I've been inspired by Kate, to try NaPoWriMo.  Kate's poems are here.

The NaPoWriMo challenge is to write one poem a day for the month of April, because April is National Poetry Writing Month.

Yes, I know it's the 10th already... I'm slow to start. If your curious, head over to  try try poetry.

Monday, April 8, 2013

not my job

When I was first looking for an assisted living residence for my Mother, I toured many facilities.  I looked at many residences near to where I lived, some in the towns around where Mom lived, and many in-between. Some were large communities, some were very small. Some were in brand new buildings, some were re-purposed old buildings. No matter what the physical space was like, I mostly concentrated on two things: what did it smell like and what did I see on the employee's faces.

I want to smell fresh air, fresh flowers in the halls, coffee and cookies in the neighborhood kitchen, chicken and broccoli from the facility's kitchen, clean sheets from the laundry room. And most importantly I didn't want to be overwhelmed by the wet diaper smell.

There is no reason in this modern world of adult disposable incontinence undergarments to ever be overwhelmed by the smell of urine. We are so fortunate, in the 21st century, that our elders do not have to wear cloth diapers. As much as I hate "disposable" anything, I am SO very grateful for these magic pink and lilac panties that my Mother can wear, panties that give protection as well as a bit of dignity.

When searching for an assisted living residence, I want to see employees that are happy to be at work. I want to see people who like their job.  I want to see people who love working with elders. I want to see honest and real communication between the residents and their caregivers.

One facility I toured had a bad case of "it's not my job". At least that's the feeling I got. The employees were only doing what they were assigned to do. They weren't doing anything else. There was an old pile of windblown trash beside the front door.  There was a smelly resident, wining in the hallway.  Why did people walk by and not help or comfort this woman? How long did this woman have to be smelly before someone helped her? And if it is not your job, at least alert someone who can attend to her. What if it was my Mother?

Now that I know more and more people who are living in assisted living, or have family members in assisted living, they have reminded me of another very important thing to check on, as you tour and select a residence.  You should eat there. You should check out the food. Even the nicest residential living can be a sad experience if the food is lousy, if every day the food is like a flashback to the worse middle-school cafeteria meals.

Wednesday, March 27, 2013

you gotta be...

My visit with Mom yesterday was horrendous.

I got a cup of coffee, then found a seat in a puddle of late afternoon sun, at a local cafe. I could not drive directly home from my visit with Mom; crying and driving are not compatible activities. The next song of background music, started as soon as I sat down: "You Gotta Be" by Des'ree. 

"You gotta be bad,
You gotta be bold,
You gotta be wiser,
You gotta be hard,
You gotta be tough,
You gotta be stronger,
You gotta be cool,
You gotta be calm,
You gotta stay together,
All I know, all I know,
Love will save the day."

Music does soothe the soul, it's like a comforting friend, this song was exactly what I needed to hear. I'm crying in my coffee.

I text-ed my friend Purple-Woman, "I hate that woman, I HATE THIS FKNG DISEASE." She would know exactly what I was ranting about.

My visit that morning, at the assisted living residence began with a conference with the director and head of nursing.  We talked about Mom's anger, aggression, and yelling. She is spitting out her food and medications, refusing to bathe, or to cooperate at all.  She is hitting and spitting and biting! (This is worse than any kindergarten teacher conference for my kids.) My Mom's continued loud and nasty expressions of her loathing and frustration at being "with all the old people".

The arthritis pain in her hips and knees may be expressing itself in her nastiness.  She is being treated for her pain, but maybe she needs something more. They will be talking with her primary care doctor. They will also be talking to her geriatric psychiatrist about adjusting her medications to help with the anger and frustration.

I talked with her nurse about Mom's "safe zone", that place where Mom is calm. It is her bed.  She is not calm when seated with her neighbors at meals. She is not calm when asked to sit with everyone else at activities. She adamantly refuses to sit in the rocker/glider chairs.  She is not calm (at all!) in the shower. Going into the shower, and now even going into the bathroom (because the shower is right over there), brings about huge fears and nasty reactions. Why?

Have I told you how thankful I am that Mom lives where she lives? They see this as a challenge, they honestly want to help Mom live a better life. Even when they are telling me about Mom's bad days and her horrible behavior, they will then tell me about the few rare days when she is cooperative, cheerful, and friendly. And they will smile and let me cry on their shoulders.

"She was once a really nice person" I found myself saying twice today. "I'm sorry."

Because Mom was being so vocally nasty today, I thought that I could talk to her and have a conversation. Duh! When will I ever learn. Periodically throughout the afternoon, I quietly tried to reprimand her, to tell her she was being nasty or rude, that her behavior was embarrassing, "shame on you", or that "we don't swear".  Each time she would roll her eyes or give me a "raspberry". When will I ever learn.

I was trying to look at magazines and catalogs with Mom. She rolls her eyes in disgust.  In one catalog is a t-shirt with this quote from Master Yoda:  Fear leads to anger, anger leads to hate, and hate leads to suffering. Sounds about right to me.

Saturday, March 16, 2013

dirty girl

When Mom was living at home and dementia had started to take hold, she would often go for days at a time without showering. This was very unusual behavior for my Mother, as she was always the first one into the shower every morning.

When Mom moved into her assisted living residence, her aides would prompt her every few days to take a shower. They would lay out her towel and clean clothes in the bathroom and see that she at least got wet.

Last summer, as Mom's mobility got worse and worse, I realized that the aides were providing much more hands-on help to Mom, in the shower.

Now the angry woman is back. She is yelling and screaming. She is lashing out at her aides. She won't get into the shower. She won't get into the big spa-type bathtub.  She won't let the hairdresser at the salon wash her hair. She has become mean and nasty to everyone.

Her aide called to tell me of this problem. I had seen Mom's stringy hair on more and more of my visits.
"I'm sorry she is being so nasty. Just please do the best you can."
"Don't you worry, we'll keep her clean."  the aide reassured me, she was not at all flustered, and was speaking of it as if it was a fun challenge. (Did I tell you I think Mom's aides are amazing?!)

At my visit yesterday, I took her aide aside and asked how the bathing battle was going.  She said that they are now giving Mom a mini-shower/ sponge bath while she is seated on the commode. And that Mom was accepting it.  Hurray for ingenious aides!

Mom's bathroom has a walk-in shower stall with grab bars, a fold down bench, and a detachable handheld shower-head. The toilet is high and also has grab bars. The sink is also a bit high and has knee space under it for a wheelchair.  The sink faucets are easy to use.  I have noticed that you can not stopper the sink, to prevent overflows. And that you cannot get really hot water from the sink, to prevent scalding. Maybe the next feature they should implement in their bathrooms is a totally tiled floor with a center drain. For people like my Mom, who would rather bathe outside the box.

Wednesday, February 20, 2013

keep it safe

Mom has lost a little weight this winter, her hands are not quite as swollen as they were in December. I have not yet called the jeweler to cut her precious ring off her finger. The ring is still stuck, behind her arthritic knuckles, but it's not as tight as it had been.

When I took my grandmother's wedding ring off my Mother's finger in October, and brought it home, I also took home all her other rings.  She had kept her jewelry in a plastic bag in the back corner of her nightstand. There was her wedding band, college and high school rings, and her one fancy topaz ring. I had left them with her, in her apartment at the assisted living residence, because she would take them out often, put them on, look at then, and it made her happy.  I didn't want to take them away from her.  But it was clear to me this winter, that she no longer knew they were there.  I didn't want these rings to wander away. I know that Mom's neighbors come and go from each others rooms and borrow things. I know it's not stealing. I don't mind that the ladies borrow Mom's books, photo albums, stuffed animals, and hairbrush. I just didn't want to loose Mom's good jewelry.

I told my brother what I did, I told him I'd be sending these rings to his daughters. But, I hadn't yet.  And now it's too late.

My house was broken into. All, all, all the jewelry is gone! In less than five minutes someone cleaned out my house.  I am mad.  But... I am so grateful that no one was hurt, no one was home. It's all stuff and junk really. It's just stuff. But, it was my junk. My very old Brownie GS pin and the lovely green sea-glass earrings. They have no value except to me, they bring back happy memories to me. Now they are gone.

My right hand is naked, my ring is not there, my skin keeps asking me "Where is this ring? You aren't gardening today, you aren't washing the bathtub, why aren't you wearing your anniversary ring?" That makes me sad.

Over the past few years, as I have been cleaning out my Mother's house, and disposing of her precious junk without her knowledge; I have been thinking a lot about the value we place on our material possessions.  As the song says "You'll have to leave it when the coffin lid's on. You can't take it with you Brother Will, Brother John."

Will Mom ever ask me where her rings are? Probably not. So I won't have to lie to her and tell her, "Don't worry Mom, I have them and they are safe."

Monday, February 11, 2013

bursting with tears

Mom has a new behavior. She will burst into tears; huge sobs, her whole body shaking, gasping, and crying.
I first saw it when my brother was here in December. It is happening more and more often.

I grabbed a huge pile of photographs from Mom's table and brought them out to her, in the common room.  There is no organization to these photos, I don't have any idea what picture will be next.  It's all a jumble, a messy pile of pictures.

The picture of my seven year old son, in a silly pose, has Mom laughing out loud. How nice it is to hear her laugh.

Here is a black and white picture of her parents and her new little brother from the 1950's.  The pain of cancer is evident on my grandmother's young face. You can see she doesn't have the energy to hold the squirming toddler in her lap.  My mother bursts out crying. "Mommy, mommy, mommy!" she wails. She is inconsolable.  Here is a memory, here is something she has not forgotten! She is inconsolable. It is horrible.

Wednesday, February 6, 2013

the sad iron and the cat

Today it was announced that the sad iron Monopoly playing piece has been replaced by the cat. The sad iron is obsolete and out of date.

My Mother had a very extensive clothing iron collection.  She had all sorts of irons: ruffle iron, hat band iron, ribbon irons, tailor's irons, charcoal burners, alcohol burners, tiny toy irons, small salesmen samples, detachable handles, wood handles, and bone handles. Clothing irons made of soapstone, steel, brass, and of course iron.

I kept a few, maybe a dozen or so, the rest went to auction.

Last week I brought some to share with Mom. Maybe fifty pounds of them! It was all that I could carry at once. In the common room, I put them out on the table in front of her, I placed her hands on the different handles, I wanted to see a connection. I wanted to see her move them in an ironing motion. Most of them were so heavy that she couldn't lift them off the table.

The aides and staff stopped by to see what we were doing. They eagerly asked Mom about her collection, they too wanted to see her light-up and communicate. But, the teacher couldn't respond, the avid collector was lost. The woman who could give an hour long presentation about the history of ironing to a room full of strangers... wasn't there.
Mom couldn't speak out and provide her knowledge, to fill out my rather sketchy explanation of what a hat-band-iron is. Her breadth of knowledge was immense,  I have just been a lifelong observer.

She gave her last ironing lecture in 2005, to one of the civic groups in town. I remember helping her load the car with boxes and boxes of irons, ironing boards, books, posters, signs, and the furniture dolly. Irons are very heavy!

The Monopoly sad iron is gone, this would have made Mom sad. At least it was replaced by the cat, she loves cats!


Thank you Dr. Jennifer Bute, what an inspiration you are!

Monday, January 21, 2013


A long time ago, when Mom was still living independently at home and she was still driving her car. A long time before I was Mom's health care proxy or her active power of attorney. Long before I went with her to every doctor's visit. Long before we realized that dementia had started taking root.

I got an early morning call from Mom, she was in a panic!
"You have to drive me to the hospital today!" She had an appointment very soon. I couldn't get any information out of her on the phone.
I dropped everything and drove an hour to her house. I would have just enough time to pick her up and drive her the half-hour to the hospital.

I get there, she's very, very anxious, she is flustered and agitated.
She couldn't tell me who she was seeing for this appointment.
She seemed like she just didn't know.
It wasn't her primary care physician.
She said, the hospital just called to tell her to come in.

She had stuffed a roll of paper towels and a bra into her purse.

On the ride to the hospital, I keep trying to find out what was going on.
"Oh here." she said, she had written something down on a scrap of paper, it says "radiology 10:20".

So, I'm wondering: why the crisis, why the worry, why the demand for the car ride? 
"Mom, radiology is just taking pictures, did Dr.M want you to have x-rays for something?"
I'm confused, my Mother knows what the word radiology means.
"They are going to cut off my breasts", she blurts out matter-of-factly.  "The paper towel will soak up the blood. And a clean bra too."
What is she talking about?!
"Mom, radiology is just taking pictures" I repeat. "No one is going to cut your breast off."  Not today anyway, I hope never, but what do I know, I have no idea what is going on.
"Are you going for a mammogram today?"
"I had one last week." she slams back at me like I should have known it.
"I can put the paper towel in my bra to soak up the blood." she says.
I repeat the only comforting thing I can say "Radiology is just pictures."

The woman in radiology sheds a little more light on this confusing visit, "we just need to take a few more pictures."  Mom leaves me in the waiting room and follows the woman to mammography.

Mom comes back calm and smiling, as if she's been out having coffee with friends. "Of course, the pictures are fine. All those moles on my skin, today they put stickers on all my moles, they keep showing up in the pictures."
"Yeah, me too Mom, they put stickers all over me too. I've inherited your moley skin."
"NO you didn't!! YOU don't know!!" she's screaming at me.
Well, yes I did, but I'm not going to argue with her here.
"I'm glad your ok." I say, backing away.

"I don't know what you were so worried about." she says with a glance over her shoulder at me, as she marches out of the hospital.
She still has the roll of paper towel and a bra hanging out of her purse.
What just happened?

Thursday, January 3, 2013


It is so hard to make a connection with my Mother.  I feel like I'm banging my head against a brick wall.

When I am with her she will usually not look at me. She will turn her head away and stare at something across the room or just shut her eyes. I talk to her, I sing to her, I show her magazines and photos, I read her mail to her. I try to get her to work on puzzles. But, I cannot get her engaged in any of this. She is aloof? She is detached. She'll give me the "what are you talking about - what are you doing" stare, then look away.

I was there for afternoon Bingo.  The aide really wanted Mom to participate, so we went.  I had to put the large poker chip into Mom's hand. I put some extra chips into her other hand. Mom squeaked out:  "I don't know." "No, no."   communicating her confusion at the situation. Only twice did she move to cover a square with a chip.  "Thirty-four" was called, Mom tried to place a chip on a square that had "4" as part of the number.  All the rest of the time she just held her chips. I pointed and prompted but she wouldn't respond.

The OT provider called me yesterday. They have seen a little progress in Mom's physicality. She is back to being able to feed herself (although much of it is now hand-held food.) She was even "caught" taking herself to the toilet the other day. (yippee!)  I relayed to her that I noticed that Mom only needed one aide to help her get up from a chair, and she didn't cry doing it, and she remembered use the chair's arms to push up.
Am I grateful for these tiny little glimmers of ability? Yes, of course! But they are such small things.

Oh dammmmmdementia I hate you!