Monday, December 27, 2010

scary stories

I've finally gotten use to Mom's stories, in that they contain a mixture of information from ten different stories. Everything is a jumble. I can understand that now. I don't try to correct her.

It's like that game, Mad Libs, fill in a person's name, add a town's name, put in some relative's name, write a month, fill in a school, pick a year. Put it all together and you get a story. Except when Mom tells it we try not to laugh out loud.

This week there was a new twist to her stories, and it makes me scared.

Mom taught second grade for many years. She loved second graders. They are curious, they love to learn, they are missing front teeth, they don't swear, and they will sing silly songs without hesitation.

She also loves picture books; she loves the short stories and the beautiful illustrations, and all the Caldecott Medal and Honor books. Barbara Cooney, Jan Brett, Tomie de Paola, Jan Yolen, Trina S. Hyman, and Mary Azarian are just some of her favorite children's authors and illustrators. Even after she retired from teaching she would still attend the children's literature festival, listen to the authors lecture, and buy new books.

As I look back now, I'm glad that I brought Mom to the Eric Carle Museum of Picture Book Art. It was a unique 70th birthday, ending with a walk through the Dr. Seuss sculpture garden.

So there is a house, an empty house, empty of life, but full of stuff. There are books, books, and books. Mom had about 18 feet of shelves just for picture books. Skinny thin children's books. She had already culled out the books she didn't want any longer. She had already given her grandchildren piles of books when they were little. These shelves contained her favorite children's books.

I contacted the local elementary school: what the library can't use, give to the teachers, and what they don't want, put aside for the used book sale. Books aren't any good unless someone is reading them, pass them along. I knew that this was what Mom wanted done with these books.

I just found out that someone from the elementary school has written Mom a thank you letter, I haven't seen it yet. It made enough of an impression on her that she told her friends about it.

But, Mom also told her friends, that the people at the school were really happy to see her, when she brought the books over, all the books that she carried over in her large tote bags.
This is the scary part of the story. Mom didn't bring these book anywhere. She didn't go to the school. She didn't help sort them or pack them up. These images are not real. She is not shuffling random old facts together to make a new story. She has imagined herself doing something, and telling us she did it. Her dreams are becoming her reality.

This is scary, a scary story indeed.

Monday, December 20, 2010

handwriting

My Mother has very distinctive handwriting. Everyone recognizes Mom's writing. I think that Mom's handwriting was one of the first hints I had, as a kid, about Santa's helpers.

Because of the second grade teacher and artist part of her personality, her penmanship has always been very important.

When I sent out letters to Mom's friends, letting them know of her new address, many said their interest was piqued the minute they saw the envelope. The return address label was from her, but the writing of their name and address wasn't in Mom's unique script.

When we moved Mom into her new apartment, I made sure she had stationary, cards, note paper, thank you cards, birthday cards, envelopes, and her address book; so she could write to people and tell them her news. I gave her mailing envelopes so she could send those children's history books to the little cousins on the other side of the world. Last week I brought her a box of Christmas cards. I brought her the 'lap desk' she uses when she writes from the bed or the sofa.

All this remains untouched. She is not writing letters. She is not sending cards.
You will not get a thank you note for the lovely bouquet of flowers. You will not get a thank you card for the books and dvd you sent her. You will not be getting a birthday card or Christmas card. You will not be receiving any mail from Mom.

I think putting pen to paper frustrates her. "I'll do it later." she tells me.
Just watching her write a check or a birthday card this autumn was a frustrating and difficult task. I don't think she'll be writing any more letters.

What prompted this blog post? I was flipping through my recipes and found my Mother's handwriting; her neat, beautiful, unique handwriting. Another part of her that has gone.

Sunday, December 19, 2010

what about Christmas

What is Christmas all about? How do we deal with dementia and Alzheimer's during the holidays? What is Christmas all about?

Is it all for the children? Is it about family and gathering loved ones? Is it about remembering your favorite charity and filling food baskets at the food pantry?

Is it about baking cookies, writing cards, and singing carols?

Is it about the fulfillment of the promise of the coming of the messiah? Is it about hope and joy? Is it about peace and love?

Last year, Mom was hesitant about staying overnight at my house for Christmas Eve, and then visiting with my husband's family for Christmas dinner.
"I don't know these people." she said nervously.
Yes you do Mom, it's just the family for dinner.

And this was her worry last Christmas. Mom, you have known my in-laws longer than I have. My husband and I grew up in the same town, our folks knew each other through various groups and organizations. I have always been so happy that our in-laws have a friendly and supportive relationship w.r.t. my husband and kids. But, to her they were all new strangers.

This week I asked Mom to come stay overnight at our house for Christmas Eve, to have brunch with my kids. (I didn't even mention going to visit my in-laws.) She balked, she quickly gave me excuses why she didn't want to go: it's too cold, what if it snows, what if it's bad driving, it's too far, she doesn't want to leave her cat, she wants to sit right there. Do I want to add to her stress and distress?
Am I being selfish? Am I being selfish wanting my Mother with me for Christmas?

I also know if I don't pick her up, and someone tells her it's Christmas day, she's going to be mad at me for not picking her up. ("Where the h*ll are you? "When is someone going to pick me up?") Reminding her that I'll be there tomorrow or that I was there last night won't make a difference. She'll still fell mad, sulky, and neglected.

What is Christmas all about? Is it about hope and joy? Is it about peace and love?
OH YES, we need a little Christmas, right this very minute!

Friday, December 10, 2010

it's all about her

One thing about this dementia that keep surprising me, is how self-centered and self absorbed Mom's behavior has become. I'm not sure if self-centered is the right word. Egocentric?

It's all about her. She is a world unto herself.

There is no conversation, there is no back and forth, she talks about her topics and I respond with, "Oh really. That's nice. Yes it was."

She never asks "How are you?" She rarely asks about my kids or husband.

My brother, EJ, was here for two weeks this past month. Two weeks that he left his wife, kids, job, and dogs to be here with us. The first week, the week from h*ll, was the week we moved Mom into the assisted living residence. The second week, we worked together on Mom's house. This second week also contained both Mom and EJ's birthdays.

Every visit with EJ and Mom - I am still shocked and saddened by her response to seeing him.
There is no "Wow, what are you doing here?"
There is no "Wow, you just flew 2500 miles to see me!"
There is no "How are you? Where is your family? How is your family?"
There is no "I'm so happy you are here for my birthday."
There is no "You're here again."
There is no "I'm glad you're here."
There is no "You're here again to see me, how nice."
There is no "Hey everybody, my son is here to see me, he came from far away."

There is only "Oh hi, did you see my newspaper, don't let the cat out, this is a picture of my grandmother's tree."

Is she thinking, "You are just another body in my room."? Or is she thinking "Of course my son is here to see me, why wouldn't he be, no big deal."? I knew, she knew who he was, at least most of the time.

I'm finding this blog post difficult to write, as it shows me the devastation, another bit of her is gone.

One day my youngest son came to help EJ and I with the cleaning-out of Mom's house. Of course we also stopped over to visit Mom.
She looked at him and asked, "Where's the one with the beard? Have you seen my shoes? Don't let the cats out. See this picture, it's me when I was five years old."
There was no "It's so nice to see you."
There was no "I've missed you."
There was no "How are you?"
Gone is the doting and loving grandmother, gone are the big hugs and squeezes, gone is the joy from her eyes.

There was no joy, no joy in mudville, no joy in mudborough.

There are just heavy hearts.

Yes, I understand, it's all the dementia. We are no longer part of her world.
It's all about living in the moment. Her moments, her world.
Her thoughts of herself as this 20 year old woman she thinks she is, the thoughts of herself as she struggles to live in a jail, a jail full of old people with gray hair. This new jail where she only has one pair of pants, table-mates who won't talk to her, and a daughter who never visits.

Wednesday, December 8, 2010

stuff

Well, as you know, Mom is now living in an assisted living residence. She is in the independent wing - able to come and go as she pleases - if she pleases. She thinks she is locked in a jail, I can't seem to change her mind about that.
"I'll be here for life."

So now there is a house. A house full of 75+ years of stuff. No, she and my Dad only lived in this house for 20+ years, but Mom saved everything.

Yes, she really did.

Her aunts' confirmation photos and certificates.
The property tax records for her grandparent's farm.
Her father's letters to his father, while he was a hobo during the Great Depression.
Every single student information list, from every year she taught school; and the corresponding list of teachers in her school building. (The phone tree for when there is a snow-day!)
Condolence cards from her mother's funeral 54 years ago.
Every single piece of correspondence with any bank, loan agency, or real estate agent that had to do with ALL three houses my parents have owned. Yes, their first house was purchased in 1958 for $4,500. and the monthly mortgage was $50. (That may have included their homeowner's insurance too.)
Every script for every puppet shows she put on in the 60's and 70's. The patterns for the puppets, and photos and brochures from each performance.
Gift cards for the baby gifts her mother got when she was born.
All the scripts, music, cast notes, and costume notes for every school musical she did with her students; annually for 25 years; and a VCR tape of each performance.
My Father's report cards.
The letter from the school superintendent, giving Mom permission to take a personal day, for the day before my wedding (Hey, I went to work that day! What was she doing?)
The journal from our 1970 vacation, 52 days traveling around the country with a pop-up trailer, we spent $31 on gas. I've even got the extra A and C tickets from Disneyland.

And this is just... the paper. Some of the paper.

I think I'll go clean a closet.

Monday, December 6, 2010

coping

How do you deal with it?
How do you get the initiative to visit Mother, when she is not glad to see me, when she is just grouchy and angry?

How do you deal with it?
How do you deal with family members who just don't "get it"? Who just don't understand dementia and Alzheimer's dementia. Who think that just because their 98 year old parents are capable, able, still driving to Florida for the winter, and flying off to Europe for the holidays; that my Mom should be too. They see my Mom walking and talking - they see her "healthy" - and they just don't understand that she is not capable and able to care for herself any longer.

How do you deal with the "hate mail" from these relatives?
I know my Mom feels that I've "put her in jail". I understand that is the dementia talking.
But how do you deal with relatives who yell at me because I've "thrown her in a nursing home to rot", because I "don't care about her."