Christmas Music Memories

The power of music... for all of us.

  I can't hold a tune, I don't understand chords, hated the piano and don't know the right words to most songs. That doesn't matter, music has a way of reaching inside and touching all of us in different ways and we experienced that with great surprise and joy on Christmas Day.

 The whole family went over to Peggy's yesterday and we brought presents for her, and gifts for her care takers.  I expected the same sad, nothing response from Peggy that has been the norm lately.  Sunny had been practicing her ukulele at home and we were running late. I told her she didn't have to stop, she could just bring it along (secretly hoping, she might play for Nana and some of the other residents at the party.)  When we got there she wanted to leave it in the car. She didn't want me to FORCE her to play in front of everybody, which I NEVER do, I only beg.  I promised her I wouldn't and I didn't.  I actually thought it would distract her from the odd smells, the unpleasantness of the details, and the scariness of what Alzheimer's has done to her Nana that she is so keen to notice now that she is almost twelve.  Gidget who is seven bounds into the place. She jumps on the bed, touches everything, hugs Nana, dances around and enjoys visiting, even if it might  only be for the slight chance of sneaking a piece of candy.

 We tried to act normal as if Peggy could hear us, see us or even understand us.  Then a couple of notes started to fill the room.  Sunny tuned her strings with my iPhone and looked up classic Christmas songs... and then a Sing-a-Long magically appeared.  It lifted us out of the awkward and unfamiliar place that Alzheimer's has placed us.  Each song took out the details of that room and into another dimension of memory, feeling and love along with the details of my life that the music rendered.  Allen crooned Silent Night which made me cry, as I remembered snowy winters and luminaries lighting up the night as we caroled our way through my neighborhood growing up in Wheaton, IL and lucky I felt to share my life with his beautiful voice.  Gidget re-enacted her second grade Holiday Concert with flair and adorable hand motions, the memories she will have of her happy times at Carpenter Elementary School just forming.  And Peggy! She came to life, smiled and tried to sing to Santa Claus is Coming to Town.  Which we sang more than once and exaggerated every note with glee.  Before we left, Sunny sang her own sweet rendition of All I Want for Christmas is You and I swelled with love and hope that music will be her guide and friend that she can rely on to get her through all the details of this lovely, sad, and wonderful life.

Happy Holidays dear friends and family.  Keep singing, laughing, crying and being there for each other, because that's what memories are made of.

Love, Lois

Curing Alzheimer's with Grape Juice

Studio LOL is an amazing place run by Ryan and Katie Chase in Studio City, CA.  Kids can laugh, learn to be confident and have fun.  My kids have been playing with these guys for over 4 years.  Every year the teen group puts on a charity show, this year they chose Hilarity for Charity.  So we took full advantage and set up shop!  

Please check out www.studiolol.com for more info

Adjusting Altitudes and Attitudes

"Dawn" gouache on paper, Lois Keller

From those last depressing posts you can see what our life is like with Alzheimer's.  It's up and down, sunup and sundown.  I have a wonderful life, I have a wonderful mother.  She is still here, and she wouldn't want me moping about and worrying and complaining. She would want me busy, so I am busy, and I am happy, and walked the dogs with my little girl this morning, the way she used to walk with me when I was little.   Alzheimer's Disease does something strange to time,  it becomes no longer linear, but all surrounding.  So today I have a new attitude of positivity, of love, and hope.  I wear my #endalz shirt when I'm busy and not with Peggy, so I can remember that having Alzheimer's in my family is special, and that we have a role to play in finding a cure.

Me, working in the kitchen sporting my #endalz T-shirt!

Blow out the candles

I don't say this lightly, or because I'm tired, or don't want to continue to fight this disease.  I say this because I'm worried that she is suffering now.  One of the saving graces about Alzheimer's is that everyone tells you that "they"(the patient) don't know what's going on.  They are not suffering.  Her recent step into yet another end stage makes me feel that this is not the case.  She is now having trouble swallowing, and her brain is not telling her throat what is air and what is food.  So she chokes, a lot.  This makes her upset and red in the face and scared.  Which makes me upset and red in the face and scared.  She has a patch that helps reduce her saliva, yet it had to be reduced to half because it was making her agitated (what doesn't?).  What I'm trying to say, is this is not a peaceful death.  And that's why I wish the candles would quickly blow out in an instant and end another one of these "end stages."

Family Relief

Our whole family was together.  My brothers flew in, as well as my Dad.  It was a big relief for me.  It's heavy on my shoulders being the only person Peggy recognizes (in her own way.)  When they tell me at her home that she responds best to me, that doesn't make me feel better, or special.  It makes me feel guilty for not being with her all the time.  So the boys went to visit and be with her, while me and my kids got some great and special Grandpa time.  Even though my brothers support us as best they can from a distance, physically being here made me feel not so alone when I am with her now, because they too experienced the depth of her stare. The same one that I am with week after week and that keeps getting further away.  Peggy might not remember that they were here, but I sure do.  Thanks guys, I needed that and I love you.

A classic backyard family portrait.

Porcelain Mind

Check out these guys film about caring for loved ones with Alzheimer's on
Kickstarter

They are making a film and need our support.  I truly believe that the grandkids are the key to a cure.  They are able to tell our story, because we are too busy and caught up in the caregiving to be able to.  Every dollar shows we care.  Good luck guys!

Her last potato chip

I brought Peggy a snack, her favorite, potato chips!  We used to always open the bag of Jay's in the car on the way home from the grocery store. Heck we used to even have them delivered.  Sharing things with her always makes me feel better.   There is so very little I can do for her anymore, she doesn't respond to anything at all.  She stares into a weird space and I'm not sure what she can and cannot see.  So, I wanted to give her something that would get her attention, something salty and crispy and loud!  She smiled and she chewed it forever and I think she even liked it.

Then they told me that we now must grind up her food because she is having trouble swallowing.  So I gave her another, because we know that you can never eat just one.  

Me feeding my Mom, I'm wearing her bracelet and my Alzheimer's Association band.

Love Through Music

I know my daughter Sunny's music is special.  The girls and I were visiting Peggy, one of Sunny's songs she wrote came on the ipod.  When the song ended we saw this moving underneath the covers.  It was Peggy, she was clapping.  She was clapping!  I held my daughter and told her how special her music is, and that it can reach people, even her Nana.  The next day we found out her song she wrote for the Reflections program, "The Magic of the Moment" won the  state level and she will be representing California in the music composition category.  Her Nana knows, and even though she won't be able to be there at the special awards luncheon in San Jose, I know she will be clapping.  

Obama's Brain Map Proposal

As I said earlier in these musings.  The number one reason I voted for Obama was his attention to Alzheimer's.  He's not kidding around.   I'm very excited about this, and hope that American's see the need to map the brain, just like the human genome project, this could lead to incredible discoveries that will help cure, treat and prevent diseases like our dreaded Alzheimer's.  You can read more about it in the New York Times here.  Human Brain Map

The Tissue is the Issue

10 years

I know it's been at least 10 years, because Sunny my oldest daughter turns 10 today.  Peggy had been repeating herself a lot, we would find notes she made for herself and she just seemed... distant.
Then she didn't come to visit me after Sunny was born. Personality change, that was listed as a symptom on the Alzheimer's Association website, and I knew now not to take it personally and it was time to act upon our hunches that maybe Mom has Alzheimer's Disease.

Ten years ago, I had no idea we would be still be here, and that the disease would still be progressing.  I didn't know I would have two wonderful daughters that would remind me of what a great Mom Peggy was.  As I watched Sunny blow out her candles, I remembered how she helped me plan my 10th birthday party, ice skating and hot chocolate.   I was a brand new Mom ten years ago when I first took my Mom to the doctor, then gently encouraged her to move into an independent living facility, told her she couldn't drive anymore, moved her things into an assistant living center and eventually out here to California with me.  I'm not a new Mom anymore, and have learned how to talk to caregivers and neurologists, exchanged baby diapers for adult ones, learned how to maneuver wheelchairs and still keep her hairdresser appointments.

Peggy, Me and Sunny 2004

Don't get me wrong, I'm not a fool, and don't see that what I've learned along the way are due compensation for this rotten, mind destroying disease.  It's just, that on this happy birthday, I can reflect on the past 10 years and see past her diagnosis, and into the person and mother she is.  This comes  through when I hear Sunny's beautiful song and in the words Gidget said to me on Saturday. We were having a special  "Mom and Gidget" day together and I asked her what she wanted to do next, and she said.  "Let's go visit Nana"

Gidget and Nana

Super Heros

Super heros, Sunny and Gidget not only save the day

They cheer up Nana

Along the way!

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

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.

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.

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.

There is no nature vs. nurture, just love.

Mother's Love

Sunny, Lois, Gidget, Liam and Allen

  If you have been reading this blog for a while you may remember my post about being adopted and my search for my birth family....well that day came last week.  It's been pretty strange, amazing, exciting, weird, and sad.  My birth mother died at a young age, 37 from an aneurism, not but ten miles from where I live now.  She came from a big Irish family just outside Chicago.  They have all been calling me and I can tell they really loved her and are so excited to meet me.  It's almost like I am picking up where she left off, age wise.  My first connection was with her twin brother Dan.  Peggy had a twin sister that died in her 30's as well.  Dan has a son, who came over to our house last week!  His name is Liam and he is so cool and sweet and fun and well, kinda looks like me!  Okay, so how do I make this post short.  Well I guess it took 24 years to find them, it might take a few words to tell the story.  My mom helped me fill out some paperwork when I turned 18 that would put my name on a list, and if the birth family was on the list too...you've got a match!  There never was a match, and I continued to look, sort of, throughout my young adult life.  I was curious.  I also wanted to let my birth mother know that everything had turned out alright.  That I was happy, I had a neat family that loved me, and well that I wasn't "an accident".  Long story short.  That same society ALMA and Catholic Charities gave me the clues I finally needed to make the call to Dan.  I asked if he was Dan Fountain, and if he had a twin sister named Patricia Fountain, and that I believed she was my birth mother.  He said, "your the baby" and proceeded to tell me the rest of the story....

Me talking to Dan for the very first time.

The first person I wanted to tell was my Mom, Peggy.  So I took her for a drive and I did.  And she smiled and listened and I talked.  My Mom has always been there for me, and she still is.  I love my family so much for giving me love and freedom and making me feel special because I was adopted.

Ukelele Visit

Sunny just started playing the ukelele, she carries it around with her wherever she goes.  So far this is the only song she knows...and they love it, everytime.

Sincere Sentiment

I received this card in the mail, an old-fashioned card, with a note...sending me well wishes and love about me and my Mom.   It made me cry, the kindness of it....Sunny my 8year old, came over to me, smiled and gave me a hug.  I felt her strength, her kindness, her understanding and her beauty.  I guess that's just what daughters do.

I'm grateful that I have spoken out and told our story, and hope I can be there for those that need company too. Caring for or about someone with Alzhiemer's is not something you can do alone.

Glen Campbell: Forget Me Not

Glen Campbell: Forget Me Not
Listen and read about Glen Campbell's Alzheimer's diagnosis.

Bye, Mom....

Now when Peggy has appointments, I meet her there.  The guys do a great job of getting her in and out of the car.  She hates change, especially changing her position.  She really gets freaked out.  I got there and saw her in the waiting room.  She was, obsessive talking and I showed her a sports magazine with lots of golf and tennis, she tried to talk back, but it got kinda embarrassing because she could't find her words and was kinda loud.  So I just sat with her.  We went in, and the guys got her in the chair, and once she settled she did pretty good.  Remember...she's a biter.  Adrienne is the best!  I totally recommend her, just click on her name if you have someone in your life with special needs that needs a cleaning.  So, then it was over and we had to move her again, just when she was getting comfortable.  Then she got her little toothbrush and off she went and I said goodbye and the guys rolled her away.  I paid the bill, went downstairs to my car, and I saw her in the van and felt sad.  She should be with me in this car.  This is HER car, I inherited it after she could no longer drive.  Seeing her from a distance is uncomfortable, I could see her anxiety through the tinted glass, and then she seemed okay, maybe it was just my anxiety.  I have to convince myself she is in good hands, I could not take care of her myself, (for goodness sakes, it take two grown men to move her from one chair to another), I have a family of my own to take care of,  she is, she should be with me.....in her car.