lunch

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..."

sister

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.

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.

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'.

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.)