Tuesday, September 25, 2012

hate mail

Part of why I write this blog is to get thoughts out of my head. Once I've written them down, I don't mull over them or let them disturb my sleep. This blog is a way for me to process thoughts and get on with life.

I need to write about the hate mail. My husband tells me to just "forget about it" and I will, once I write it down.

As you know, I am participating in the WALK TO END ALZHEIMER'S. I have been fundraising through emails, facebook, and by handing out pledge sheets to people I see. But then I remembered other people we know: Mom's friends and neighbors, her "dear old friends", the women of her monthly luncheon group, friends from her church, and our extended family. These are people I can only communicate with the old fashion way, with a letter. I don't expect a donation from everybody. I know some of these people have severely limited incomes. But maybe my letter will encourage them to call, write, or visit Mom. To remember her.

I have also shared with you how I had to clean out and sell her house. (Such a short sentence for such a huge project!) These physical assets have become liquid assets now. Money for the monthly bill at the assisted living residence, money for her medications, insurance, clothes, cat food, toothpaste...  she still has lots of financial expenses and responsibilities, it's my task to do that for her. It's still her money. I'm just her poa.

Someone mailed back the WALK pledge form with a handwritten note at the bottom, no return address, no name. After reading it, my husband and I both knew who it was from.  He said I received a FU letter.  It made my stomach turn.

"Please use our share from the proceeds from the sale of (her) house and antiques as our contribution. This should put you over ($ fundraising goal)."

Your share?!?
My Mother's not dead!

Monday, September 24, 2012

AAQI in Houston

Once again I am honored to have six of my Priority Quilts at the International Quilt Festival in Houston, TX.  These little art quilts are part of the Special Exhibit and sale by the AAQI, the Alzheimer's Art Quilt Initiative.

** The AAQI will be bringing TWO THOUSAND little art quilts to the festival **

The festival runs from October 31 to November 4th at the George E Brown Convention Center.

 The AAQI always has Priority Quilts for sale on their website. 
(AAQI project and website closed December 2013) 
The Alzheimer's Art Quilt Initiative sells small format art quilts (9" x 12" or smaller) donated by their supporters to finance Alzheimer's research.

blah blah blah

Words, words, words... Mom is loosing her words. At our last visit, I'm not sure any of her sentences made any sense.  We "talked" for three hours, but I don't think in that whole time, she said anything you would consider a structured sentence.

She pointed to my knuckles and said "Poop hand."
"Those are my freckles."
"Poop on hand!"
I wonder where that thought came from?  

Monday, September 17, 2012

it takes a village

As I drove away from visiting Mom the other day, I had to stop for a school bus.  The driver made sure I had stopped before letting her charge cross in front of me.  She smiled and waved as we passed. It reminded me of Kathy, who faithfully bussed my kids for over 15 years. Both of these women are part of that "village", that caring place that we need, to raise our children.

And I had just left my Mother in her "village". I am so glad my Mom is living in her assisted living residence. It truly is a community, a village, a nurturing caring place.

I was there for the end of summer outdoor bar-b-que. It was a beautiful sunny day. Tents and tables set up in the parking lot. Colorful mums and scarecrows were all around.

What struck me, that day, was that everyone participated in this picnic lunch. It was a festive and fun bar-b-que. The director was passing out burgers and dogs, the hairdresser was handing out ice cream sandwiches, the financial officer was refilling empty lemonade cups, the driver was cutting up someone's burger, an aide was wiping melted fudgecycle off of a chin, the maintenance man came around with seconds, and another aide was passing out sun hats for the hot and sweaters for the chilly. And of course the kitchen staff created this delicious lunch. People were laughing and eating and enjoying themselves.  I am so grateful for this caring community where Mom lives. This village that not only supports my Mother's physical needs, but accepts her as she is.

My husband and I are searching for our next home, our retirement home.  We are not just looking for a house, we are searching for a community.  Wouldn't it be great if all towns were there to support all their citizens:  the little kids, the athletic kids, the geeky kids, the musical, the shy, the single parent, the widow and widowers, the elders, the ecological, the lgbt, the housebound, the hungry, the artists, the political, the religious, the farmers, and people like my Mom, who can't live on their own.

Tuesday, September 11, 2012

The House I Loved

I grabbed the book "The House I Loved" by Tatiana de Rosnay off the library shelf because of two reasons. The first was it's title.  My Mother also loved her house, she was so adamant that she was never going to leave it. What did Ms. de Rosnay  have to say, about another house that was so very loved? And the second reason was that I had recently read another of her books "Sarah's Key" and enjoy her style of writing.

In the book "The House I Loved" we are reading what Rose is writing to her husband Armand. I believe she is writing in a journal, but writes as if it's for Armand's eyes. Rose loves their house. The house of her husband's family.  It is a warm and beautiful place, unlike the soulless place she grew up.  Her story jumps back and forth through time. She recollects events and people throughout their shared history and the years before and after their marriage.

And then it's there:  the blank stares, the wandering, the dementia. Armand has dementia. I'm reading this book for pleasure and dementia finds me. This is not a book from that stack of books, resources I go to when I don't know how to deal with my Mother's dementia. This is suppose to be fun reading. But it's there, dementia is everywhere.  

The story Ms. de Rosnay writes is also gripping because Rose, throughout the book, reminds us, over and over, that she is not going to leave her house, she loves her house, it is integral to her existence.  This is the way my Mother felt. Would my Mother have done what Rose did, if she were in her right mind...?  Is Rose in her right mind...?

I often wonder what would have happened to my Mother if I had left her in her house. Could I have left her there? Was there really no choice, but to drag her kicking and screaming out of there?  Why did Rose's friends and family not make that same decision?

Read the book!

Thursday, September 6, 2012

when's lunch

Mom has just finished eating her after lunch cookie, washed down with a glass of milk. She is still holding her glass, when she asks me. "When do we have lunch?"

Wednesday, September 5, 2012

a gift

I am rereading "Creating Moments of Joy".   It's a book I highly recommend to all caregivers.

I bought Mom some new pj's, a larger size, her old pj's make her look like a stuffed sausage.  When I give them to her she's going to fight me, and argue with me, and disagree that these new pj's aren't the "right" ones.  I can see the battle play out before it even happens. So sad.

So, I had a thought.  I wrapped the pj's in gift wrap and slapped on a gold bow. Then I wrote out a card, with a picture of a cat on it, of course, and it reads:  "Dear Grammy, I saw these pj's and thought of you. I know you like blue. Love, DB"   Yes, I signed my son's name to this card. My son has no idea that he gave his grandmother pj's today.  I am using my own children in this deception with my Mother. 

But, you know what?  Mom was thrilled to get a gift from her grandson. She coo-ed over the cute cat on the card. She told me the pj's were very pretty. She was so excited to get them that she wanted to try them on right away.
You know what?
I created a moment of joy.
I avoided a battle with Mom.

She wore the gold bow for the rest of the day like a corsage.

The aide asked me if I thought Mom would wear these new pj's.  They know how hard it is to get Mom dressed everyday, especially when her favorite ("the only pair I have") pair of jeans is in the laundry. I was grinning and laughing, "She likes them now. They are a gift from her grandson. Just remind her of that."