what's in a name

I've been thinking a lot about names. The nouns, common and proper, we use to identify something. This pondering started before my Mother's bold announcement of her maiden name back in May. (see previous story)

Our ability to put a name on something begins, in the beginning. One of the first words most babies say is Dad or Mom. Babies are naming that which is most important. I think it's very significant that a story about naming things is right there in the beginning in the second chapter of Genesis. God tells Adam to name the things that God created.
Do you remember learning the importance of naming and categorizing? Kingdom, phylum, class, order, family, genus, specie. Our need to name and organize is strong. I have six of the Audubon Society Field Guides that I use all the time. I saw a huge Chelydra serpentina the other day and last month I saw a Pyrola elliptica for the first time. I had to go look it up and find out it's name.

With dementia the ability to say the right word becomes lost. The ability to put a name to something disappears. The ability to recall someone's name is lost too. I saw this start a long time ago with my Mother.
Who drove you to church today?
"My friend." she would say.
Who was at the luncheon?
"Oh, the usual women."

She'd meet someone outside the post office and chat with them for five minutes, about everything and everyone, never making introductions. Later I'd ask her who this person was. "A friend." she'd say. Now I am more proactive and introduce myself.

I have a friend whose Mother also has dementia. Her mother gives things new names, because she can not remember the words. She calls the flowers in the garden "bulls#*t". This would be funny except that it is now as if her mother has metaphorically crapped all over her garden. The beautiful flowers that were there to rejuvenate her soul when she's feeling stressed from caregiving, now are called bulls#*t. Their new name has become another reminder of the sadness of dementia.

Mom and I have been looking at lots of family photographs. She has torn apart the photo albums, putting all the pictures into boxes. There is no longer any sorting by year, vacation, or branch of the family tree. It is amazing how strong the past memories are, when she can't even remember if the aide came this morning. She tells me wild stories about the beach vacation with her college friends, all the fun they had, and the boyfriends who drove up to meet them there on the sly. tmi Mom tmi.

I show her a photo of two little children, my brother and me. She says "that's her and him", she did not say "you and your brother", she did not say our names.

Mom is one of the ten people left on earth that still uses a 35mm film camera. She can't change, she can't learn how to use a digital camera, and I don't expect her to. Do you know how hard it is to find film for a camera?! And no one does one-hour-processing anymore, well not in our area. So we dropped off two rolls of film to be processed at the local department store. Five days later we went back to pick up the prints.

"Name please." said the clerk.
"Wxyz, w-x-y-z" I said, spelling out Mom's last name.
Mom pushed me aside and yelled at the clerk, "NO! It's Abcd! Abcd! a-b-c-d." Mom was yelling her first name. I was quick this time and said "yes that name too."

For my whole life I've had to spell out my first name, my last name, and even my married name. These words are never spelled like they sound, or sound like they look.
The photos were not ready, so we left.
The next time we went to get the prints, the same clerk queried, "Last name please?"
"Wxyz, w-x-y-z" I said. This time Mom again pushed me aside and yelled "No! No it's Lmnop, Lmnop!" my last name, she's correcting me cause I'm not giving him my last name.

No, a rose by any name other name would not smell as sweet, sometimes they smell of bulls*#t.

theatre critic

It's a good thing that Mom is not the theatre critic for the local news paper. Mom and her girlfriends have had season tickets to the local summer theatre for the last six, maybe ten, years. It is always a festive occasion. She looks forward to the shows from when she buys her tickets in April. Their tickets are always for opening night, when there is an elegant reception of sparkling wine and nibbles.

For at least the past two years, that I've noticed, she has not enjoyed the performances. She can't tell me about the play, she can't tell me what the story was about.

She complains about all sorts of things: the show started too late, it ran too late, she got home too late, it's too cold in the theatre, the theatre is too far away, she fell asleep, the play only had two actors, people were pushy, and the actors all spoke funny. She complains that the actresses wore those old fashioned long dresses when it's July and much too hot, they should know better.

She can't follow the story. She can't remember what I said five minutes ago, how is she going to remember a cast of characters and follow their conversation. She no longer understands satire. She no longer gets political humor. She can't follow along with banter and innuendo. She once enjoyed the performances - now it's all over her head.

I asked her this spring if she wanted to add a ticket for the youth summer theatre performance of Charlotte's Web, as it was one of her favorite stories that she read to her second graders. "No, no, there will be too many kids running around." What a grouchy response from a former teacher.

But it's right in line with her only response to a movie we saw together last summer, "at least there weren't kids running around the theatre, yelling and throwing popcorn." But, Mom, did you like the movie?

one year

I've been blogging about Mom and her trip through dementia for one year.

carry the load

"The road is long, with many a winding turns, that leads us to who know where, but I'm strong, strong enough to carry him, he ain't heavy, he's my brother."
I was carried last night by my husband, he was strong for me, he helped me bear my burden.

Can I be strong for my Mother? Can I continue to carry her?

live free or die

You know how you see things differently sometimes. The motto of the state of NH is "Live free or die." It is on most every NH license plate. This quote is in my sight all the time. The quote, by General John Stark, continues "Death is not the worst of evils."

Didn't Professor Dumbledore say something like that too? "He accepts that he must die, and understands that there are far, far worse things in the living world than dying." (Harry Potter and the Deathly Hallows chapter 35)

Living without freedom, as a slave, as an oppressed and conquered people. Living without love. Living without you abilities. Living without your mind.

When we discuss moving out of her house and into an assisted living facility, Mom always gets angry and upset. She says things like "Don't put me in a jail." and "I'm not ready to give up yet."

I just read the book Living in the Labyrinth: A personal journey through the maze of Alzheimer's by Diana Friel McGowin. A very powerful first hand account. Diana writes about not letting her family know what mistakes she's been making. "I mustn't get into any trouble or I will be forced to relinquish all of my human rights."

Will Mom give up her will to live if she is not free in her own house? Will she die if she is not free?

What about my argument that she will be free from meal preparation, free from isolation and loneliness, free from worry about her home falling down around her?

Live free or die. What do we do?

can't sleep

It is 3:40 am and I am still awake. My heart is pounding. I can feel the blood flush in my neck and chest. My body is exhausted. My head is a whirl with thoughts of what I have to do the next day. I have to visit Mom, of course, but more than that, I have to confront her caregivers, not her aides personally, but the company that provides them. I have to advocate for my Mother.

I am exhausted. Dear brain, please slow down so I can sleep. Dear body, please fall asleep. I am of no use to anyone if I get sick.

are you my mother?

You remember the children's book "Are You My Mother?" by P.D. Eastman. It is one of the great early reader books, along with "Go, Dog. Go!" and "One Fish Two Fish Red Fish Blue Fish".

My husband and I are sitting at the kitchen table. I am decompressing after an exasperating phone call from one of Mom's friends. Breathe deep, try to think of the logical steps I must take tomorrow to deal with this news about Mom. Tomorrow, I can postpone any action until tomorrow, it's 10 pm now, breathe deep, calm down.

Our cat, is sitting by my feet, she looks up at me, tilts her head and gives a soft "mew?" My husband translates for the cat, "Are you my mother?" I scoop the cat up and start to sob, burying my face in her soft fur.
"I don't think my Mom knows that answer."

The grief is overwhelming. The loss of my Mother, who is still here. So many opposite emotions: I love my Mother, but I really don't like her much these days. I want to be with her, yet I procrastinate on my way to her house. I want to assent to her wishes, yet I can't do what she wants.