Merry Christmas

Cards and holiday gifts to all the staff that help Peggy.

They can have fun together anywhere!

Linda and Peggy

Gidget and Nana

Allen had 3 helpings!  Awesome food from Gelsons.

Thank you Cousin Betty, hey look out for that elf on the shelf!!!

Happy Holidays

Thanksgiving dinner with turkey, cranberries, mashed potatoes, gravy and even a little champagne.

I mean it.  I wish you and your family the best and most memorable of holidays, because the traditions, the songs, the smells, the tastes, are what we remember.  So right  now it might all just seem like chores and things that you need to get done.  Trust me, later all the little things you do to make the holidays special will mean so much.  These are the things that we can grasp onto, that we can hear, that we can taste and that we can feel and celebrate with Peggy.  Here are the pictures to prove it.  Holiday's are family and caring and we are lucky that we have Peggy to remind us of that.

Decorating the live Christmas tree my brother's family sent! 

Happy together.

Sunny's Song

Sunny wanted to write a song for the Reflections program sponsered by the PTA.  They have a different theme every year, this year it was "Magic of the Moment".  She discovered the tune on her ukelele, and was struggling with the words.  We were looking at some old photos and found these pictures of her and Peggy at an aquarium walking around, having lunch together and we couldn't believe that was her, and not that long ago.  So, she wrote these words, developed a chorus and melody and her Dad and friend Scott Bennett recorded it at his home studio.  My dear friend Barbie Pritchard turned it into a video, and here it is...

I Remember by Sunny Rae Keller

Lots of Peggys

4 Peggys walked into a bar...

PJ and Gidget at the Studio City Farmer's Market

Just kidding.  I just feel a little lighter, a little less burdened, and a little exhausted when my family comes to visit and we all visit Peggy together.  Thanks for spending time, helping me go through her clothes, helping me order new shirts that she needs that are more practical than beautiful, for taking the kids, eating a cupcake with me and for being a part of our world that includes living with Alzheimer's.  

Alzheimers Fashion

I'm so glad Peggy Lu and PJ are here to help me make these "fashion" choices for my Mom.

Well, that didn't work

Ativan, that is.  Peggy does not like to be touched.  To be moved, or changed, or any of that.  It's called agitation. We've tried things in the past, but they knocked her out.  Sometimes she seems so aggravated that we thought maybe a little knocking out would be okay.  Relax her in times of stress.  Well, that didn't work.  A small dose of Ativan in liquid form before she needed to be bathed or changed or fed, only made her drool.  A feisty drooler, choking on her own saliva.  Alzheimer's research not only needs to address a cure, but care during end stages.  There doesn't seem to be much out there for me during this time. If anyone knows, please pass it along.  There certainly aren't any trials, they all say she is too far along, not eligible.  But, what about these last two years that have been heart breaking for us, to see her so "agitated", and these end stages, don't seem to have an end, how long will this stage last?  Certainly long enough to study what works, because we certainly have a list of what doesn't.

We Walk Today

Dear Mom,
I will walk today
because you can't anymore

Your granddaughters will walk today
because they wish you could read them a story

My husband will walk today
because he knows my tears in the middle of the night

Friends will walk today
because they have taken the time to listen to our story

Strangers will walk today
because they share our fate

We will all walk today

when you are crying out
when you are alone in your bed
when you are being propped up and spoon fed your breakfast
when you are swearing as your diaper is changed
when your smile turns into a desperate frown
when the music plays in your room to calm you down

And even though you don't know who we are,
we will walk today
because if you could, you would walk with us.

Love, Lois


Donations of any amount are gratefully received. THANK YOU!

On Alzheimer’s Prevention, Obama Has A Record To Run On

On Alzheimer’s Prevention, Obama Has A Record To Run On: pOur guest blogger is Amy R. Borenstein, Ph.D., a professor of epidemiology at the University of South Florida’s College of Public Health. You wouldn’t know it from listening to the recent presidential debates, but President Obama has made some real accomplishments in supporting the fight against Alzheimer’s disease — accomplishments with potentially significant economic benefits. [...]/p

What you don't learn in school

Guess which one is for Nana. (the heart shaped rock)

Wednesday there was no school.  No rushing around, no homework, no hot asphalt to line up on.   I took the kids to Leo Carillo State Park which is a little farther than where we usually go, because it has tide pools.  A place where we could wear our Keene's (thanks Dad!) and walk in the ocean and find starfish, tons of crabs, and a weird pink cucumber kinda thing.  A place where the girls flew little kites on their own for an hour and a half, engaging only with the wind.
No pencils, no paper, and no schedules, except for the tide.
We stopped by Nana's on our way.  We woke her up, kissed her and told her we were going to the beach.  We told her what we were bringing and that we wished she could go with us.  Peggy responded, with an occasional yes, and a smile.  We put her beach wave music on her ipod and the girls hugged her.  Gidget told her we would bring her back a beautiful shell.  They looked all day for a perfect one for her.    Empathy, compassion and thoughtfulness are just a few of the things  the girls learned on this bright and lovely, windy day off from school.

I feel that we have all learned a lot from Peggy, we have studied, we have been tested and we are  ready to graduate.
Please, we don't want need to go to graduate school. 

We rallied

Happy Birthday Nana

Birthday Post

I was waiting for this day, Peggy's birthday to do a big post about the Alzheimer's Walk, and how we raised over $5,000 over the past few years.  Getting a team together and writing everything in purple with easy links. What a wonderful way to celebrate her birthday. Upbeat, positive, showing gratitude and hope.

But, I don't feel like it.

I don't want to walk, I don't want to ask for money.  I feel hopeless.  I don't understand why it's people like us, in the front lines that have to do all the asking.   I don't want to fight, I don't want to beg, I don't want to celebrate.  Maybe tomorrow.

Being Together- David's visit

David, Lois, Sharyl, Ashley, Peggy and Christopher

Here we are, this is us.  David came out to visit with his family.  They visited Peggy everyday, and played with us too.  We went to dinner, we talked about things, we laughed with the kids and we wondered when it would be over.  Will this be his last time visiting her?  How long has she been out here?  4 years?  It doesn't really matter, because here we are and because of her, we are together.  The cousins get to play together, and instead of taking her out with us like we used to, we go out together.  Thankful for her and her life and that she brought us together and because of her we make an effort to stay close and bring our kids up, they way she brought us up.  So we tell her what grade the kids are in, tell her jokes and Ashley shows off her cartwheels.  We want to believe that she knows that,  even though we want it to end, we don't want her to.

cousins

After Studio LOL

Before Studio LOL

Ashley doing Kartwheels for Nana

"Mom, are you ever going to get Alzheimer's?"

Gidget asked me in the car on the way home from visiting Peggy. "No, honey I'm not."I said.
  "If I do, I don't want you to have to take care of me." "We will!" they shouted.

It's not about me anymore, or Peggy, it's about my kids.  My beautiful, healthy, sensitive kids.  

Sunny's bio in her camp play 

Her Playlist

I knew music was good for Peggy.  We bought her an ipod a while ago and uploaded all kinds of music on it.  Piano, soothing, lively contemporary, Frank Sinatra, the Beatles, 50's, classical shufflling around for her when she was in her room.

Then I saw this wonderful video that I posted previously about music of this man's era. Check out this cool movie, Alive Inside.

I needed the music that was still in her, not what was on our playlist.   We didn't have a lot of music in my house growing up.  She has lived a long time. What is her genre? I asked myself as I scanned the itunes playlists.  She loves row row row your boat...what genre is that?  What label?  Who the heck sang it first?
It took me way too long to figure out how to get rid of all the apps, and old playlists and the confusing things, like clouds and share and twitter, to make her new playlist which made me come to the conclusion that this must be why we get Alzheimer's, our brains are all mucked up from the years of input until finally all the wires get overloaded and what's left are a few little notes...row row row your boat.  Just try and say that without singing it's tune, or this one, Twinkle twinkle little star...

So, along with a new playlist from the 40's Gidget and I recorded this, and she smiled and mouthed the words.

(original) Man In Nursing Home Reacts To Hearing Music From His Era

I Wish You Were Here

 We took a four week road trip back to the midwest.  2 adults, 2 kids and 1 dog in a Prius. When we told people this, they said Why?!  They thought we were crazy.  We just wanted to get in the car and drive out of LA, no schedule, no plans, no trying to make it all work out here.  Plus, I was going to meet my birth family.  Everyone was so flexible as we played this journey by ear.  We took route 66 out there and stared out the window and played car games with the kids. We stopped and gazed at the Grand Canyon, beautiful sunsets and we ate a LOT of ice cream.  We saw old friends and family, made new friends and family, and I missed Peggy.

  The Midwest is where Peggy is supposed to be, not lying in some bed in the San Fernando Valley in Southern California.  We should of been visiting her in Glen Ellyn, IL but we are not.  We are visiting the places she was, where she was the Peggy that played tennis, and volunteered at the hospital and shopped at the health food store, and the Peggy that was my Mom.  This trip made me see her there, and she would of loved to have us come visit and see Allen and the girls.  I cried, but it felt kinda good crying, it felt good missing her, both with and without her Alzheimer's.  Reflecting on my life was a huge part of this road trip for me, and maybe that's part of the why we did this.  I needed to remember her there, so I can take care of her here.

Reflecting Sunset

Where Are You?

Waterbury, Connecticut where Peggy grew up.

"Mom, where are you?  Are you in Connecticut?  Are you in Wheaton, Illinois?  Are you in New York City?"  to all these questions I didn't get any response.  "Are you with Lois?"  She said "yes."

She's with me, or her sister.  It doesn't matter, she is with family and that means she is home.  While this is wonderful and heartwarming and made me smile and cry.  It makes me cry for a different reason.  I don't want to be the only thing she knows.  It's too much.  

Faded

"Faded" for Illustration Friday

Faded was the topic on Illustration Friday this week, (it is an artist's website, with a new theme every week.) It's cool, inspiring and fun.  I used to publish one all the time, these days, maybe once every three months.   I was visiting Peggy yesterday and her bureau is crammed with framed photos, gathering dust.  Photos in albums on the shelves, boxes of photos and framed one's in piles.  No one is looking at them any more.  She can't really see them, I don't really like trying to show her or talk about them.  I wonder if I should just take them down. 

Clock ticking with new plan to fight Alzheimer's – USATODAY.com

Clock ticking with new plan to fight Alzheimer's – USATODAY.com

Best Mother's Day Present

We were all around the table last night.  I asked "What do you guys want to do for Mother's Day?"  Sunny says, "First, we should go visit Nana."

My thoughtful, beautiful 9 year old.

Check out the Alzheimer's Association website!

Please sign the petition.

I urge you to join me and visit the Alzheimer's Association today!

If the text above does not appear as a clickable link, you can visit the web address:

http://www.alz.org/petition/overview.asp?WT.mc_id=enews2012_05_09&s_oo=xwEjcMlKsVf7PyAdMNkT1w

If you no longer wish to receive email messages sent from your friends on behalf of this organization, please click here or paste this URL into your browser: http://act.alz.org/site/TellFriendOpt?action=optout&toe=958c09f0f748d4f5d5e9c43fa5bed7d95ea55b7f3559f1ed1ccd4c50a5c00593

It's okay.

Every time I write an emotional post when I stop in to see her I am amazed at how "used" to her I am.  I know it's intense reading these stories, it's intense writing them.  It's a place I can put my emotions and feelings, when I'm not with her.  But, honestly, when I'm with her it's okay.  She was getting her hair done, the fish tank guy was there, lots of hub bub, and I had lunch with everyone.  I fed her a tuna sandwich and I was talking about her in the third person to some of the others.  Then, I'd ask her if she's happy here.  "Oh, yes" she would respond.  I think that is the hardest part.  Not knowing what she knows, does she know I was talking about her?  Anyway, that's not what this post is about.  It's about accepting her and being with her, the way she is, it's okay, it's not great, it's not what I want, but it is okay.

A Beacon in the Trader Joe's Parking Lot

I ran into a son in the Trader Joe's parking lot.  His Mom has Alzhiemer's and was at Sunrise when my Mom was there.  We used to chat a little when we were visiting.  "She's doing pretty good" that's what we said to each other, but we both knew that was a response for other people.  He rolled down his window a little further and then we talked.  We smiled and kinda chuckled about how strong our mother's were, and how they were still kicking.  We talked about how our Mom's were healthy and vibrant and beautiful and lovely and didn't smoke to much or drink to much (for women of their era.) We shook our heads, wondering why them...  I asked him how he is doing. "Okay" he said.  He had a lot of stress a while ago, but he's learned to take better care of himself.  I admitted it was getting harder and harder for me to visit Peggy without getting depressed.  We stood there, in the midst of our errands, the craziness of the Trader Joe's parking lot and smiled at each other. It was really nice to see him.

This is hard to explain, but seeing him gave me the feeling as if I was  in Europe, or Africa traveling for a long time and I just ran into someone from my home town.  Someone with whom I can relate to in this foreign landscape. Someone who speaks the same language, with the same accent, someone who knows why things are different here, and how you can even taste it in the water.  He know's this because he is from the same place I grew up, the place where we had Moms.

The Power of a Library Card

Gidget loves reading, in fact she's actually learning how to read.  I'm not bragging and I know it doesn't really matter when you start to read, as long as you do end up reading.  But, she's my daughter, and Peggy is her Nana and besides,  it's our blog, the perfect place for bragging, because she's not yet 5.

So our days have been happily filled reading and sounding out words and going to the library.  Today we brought her library books over to Peggy's.  We sat in the big couch and she listened to us read.  The sound of our voices made her happy.  The simple act of holding a child and a book and reading out loud is a memory and a bond all of us share.  I was happy that we shared it with her today.  After all, she's the one that helped me get my very first library card too. 

Good News or Bad News?

I need to catch up on this month, filled with good news and bad news.  It's hard to distinguish the two.  Honestly.  I saw her one day, and thought the worst.  I called my brothers, I thought this was near the end.   Was this bad news or good news?

Then I'd see her the next day, up and chewing her meat, smiling, like everything was totally normal.  Good news or bad news?

But, every time I walk in the door.  "Hi Mom" I shout out and she says "Oh, hi Lois"(funny meeting you here) or "Hi Lois" (I'm just having this stranger spoon feed me my dinner, I'll be right with you.)  I can't believe it.  How does she recognize me?  She seems to have no idea what is going on, where she is, that she is even in a wheel chair.  How does she know it's me?  To talk to her, you have to stand right in front of her, prop her up because she's stiff as a crooked board then try and make eye contact, and then it is still not very clear if she is even looking at you.  But she seems to knows it's me. Then I think, if she does know it's me, how much does she know or understand or FEEL.  This seems like very bad news.

But how does she know it's me?  How does she recognize me, when she can't seem to see 12 inches in front of her face?  I finally figured it out.  It's my voice.  When I shout out "Hi Mom" she recognizes my voice, and goes to that place, that comfortable place where I exist.  I don't know where, but somewhere in there.  I exist.   This is good news, I think.

Just a minute...

I don't mean "just a minute", or "I'll be there in a minute," which we know is longer than 60 seconds and usually means, "I don't really feel like doing that right now."  

What I mean is that even a minute of my time can be enough.  I'm loving Peggy again with a full heart.  I've been stopping by more frequently, for less amount of time.  The last three times have been good.  I like to hug her, let her know I'm there.  She lights up.  A minute to her could mean an eternity, a day, a month, maybe a second, who knows?  It's just that I happen to be living in real time, filled with children, friends, work, chores and there never seems to be enough hours in the day, let alone minutes.  But, when I stop by on my way from this or that to see how she is, I find the real value of a mere minute,  by her smile.

She's still my Mom, and seems as though I'm still learning about life from her.

I'm busy, but she's not.

I am so busy these days, I just realized it's been a week since I visited Peggy.  Then I realized how much has happened over the past month or two.  For starters, it's now 2012.  It was Sunny's birthday, and Valentine's Day, and I started teaching pre-school art, and we got a homemake over for a reality tv show!  Soon it will be St. Patrick's Day, and Peggy's irish eyes will be in the same place.  In her room, waiting, and dreaming and sleeping and being bathed by someone else.  I can't think about it too much.  I cried the time before last when I visited.  She loves the Beatles. Allen made her a special soundtrack, and when I go over there, the music keeps me company and she seems to like it.  She's in between my life, and I love her the same, but now instead of always trying to include her in everything, she feels like a separate entity.  Again it's a new normal, and I'm adjusting.  I just can't look forward or back, so when I visit the music fills the space and when she gets a sad face when I leave, I have to look away, and just turn up the music a little so it can be there, when I'm not. 

Huh?

New Criteria Could Change Who is Diagnosed with Alzheimer's Disease

Articles like this, make this world of dementia uninhabitable.

StoryCorps

StoryCorps is a really cool organization that is preserving oral history.  I took my Mom to the mobile StoryCorps booth over the Thanksgiving holiday when David was here.  It was pretty difficult getting her there, and I thought to myself "why am I doing this" as I struggled to get her in and out of the car, eliciting a stranger who had no idea what they got themselves into.  Anyway, "Why was I doing this?" as I was sweating pushing her up the makeshift ramp, and as we start the microphone and she doesn't talk.  Why?
Because there is so much to learn from the silence in this recording, in the stuttering, in my voice, and in Sunny's.  Our story is not compelling to listen to, yet if you do you'll find the story in the silence and unanswered questions. And then there is Sunny's voice, a sweet 8 year old, and how she communicates and expresses her feelings about what it's like to have a "Nana" with Alzheimer's Disease. This is why I came to StoryCorp.   I didn't do this to record a memory like so many people who come to record friends and family at StoryCorps.  This is the coolest reason to come to StoryCorps,  and I urge you to sign up if you can.   This is not something I need to, or care to remember.  I wanted our story to be shared with others. I did this to express the need for a cure. I want the world to hear what it's really like at the end stages of Alzheimer's Disease.When you can't communicate with your mother except in fragments, pieces and lost details. What it's like to have lost someone dear, when they are sitting right there in front of you.


Here is the recording....StoryCorp podcast
    At the end of the recording if you can bear listening long enough you will hear Peggy say
 "I love you, too."

Lauren and Seth Rogen's Hilarity for Charity

Wow, that was fun!  When do I ever start out a post like that on this blog.  They didn't mention the sorrow, or anything about Alzhiemer's.  In the program they told us why, mentioned some stories, but mainly raised money, awareness and had a great time.  We got to see Tenacious D live!  Lots of great comics, delicious food, a real date with my husband.  I don't know, it was pretty cool to be a part of it.  Something so close to my heart, and my heartache, to be able to smile was just an awesome idea.

Thank you Seth and Lauren!  Heres a nice link about them and why they are doing this.