Tuesday, March 31, 2015

David, Paul and Lois

My brothers came in to see us. When all three of us walked in her room, somehow she knew it, or we knew it and that was enough to make us believe that she did.  Her three kids, telling her we loved her and are there for her, just like she was for us put a smile on all our faces.  Our kind and caring Mom that made us the parents we are today.  She'd be darn proud of us and her grandkids, if only Alzheimer's didn't take so much away from her life, and ours.  She was an amazing Mom by example and by believing each of us could be and do anything. She loves us dearly and so there we were, her three children supporting each other and showing her the unconditional love that she showed us.  What goes around comes around, let's just hope and keep working for a cure so that it's the love that is handed down and not Alzheimer's.

Paul, Lois and David today
y
and in 1970

Tuesday, February 24, 2015

Still Peggy

Yeah!!  Julianne Moore won best actress for Still Alice.  This movie has really raised awareness for the disease.  So, the Alzheimer's Association is doing a camaign called #still...
encouraging people like us to post pics of our loved ones with ALZ.  So, I thought we'd participate because the whole point of my blog and Facebook is to do exactly what the movie is doing.  Show people the real face of ALZ.  I loved Julianne's speech when she said that "People with Alzheimer's deserve to be seen. " That's my whole reason for this blog.

But, Oh, Ugh, how do you take a good picture with someone with Alzheimer's Disease?

Smile? Say Cheese? Look somber, morose, sad, serious, very serious, lightly serious?  How about bunny ears behind her head? Happy? Laughing? no, delete. delete. delete.  My hair looks funny, I look old, too smiley, my hair!  Stop.  Not about me.  How does Peggy look?  same. same. same. "Mom! Open your eyes."  Okay, let's try this again.  click. click. click. click.  #stillPeggy #mybrain

#stillPeggy #mybrain #endalz

My 7 year old daughter just woke up and came over to the computer and said
"That's a terrible Picture."  Yeah, it is, and Alzheimer's is a terrible disease. #ENDALZ

Thursday, February 19, 2015

Oliver Sacks and his entrance into knowing his fate.

Oliver Sacks has always known what to say to me throughout my life.  I wish him well on his final journey, and thanks for always keeping my mind open and full.


Oliver Sacks on his diagnosis with terminal cancer

Friday, February 6, 2015

Paper Work

I've been advised to contact and make funeral arrangements and make phone calls to be prepared... for what?  This was 2 months ago.

Happy Moments in Time

Gidgey lost her front tooth!  She looks so different and cute.  It's a big milestone in her life.  She's 7 and she never will be again.  We love her so much.  She is so goofy and jumpy and darling and smart. We took pictures and laughed.  She made a note to the tooth fairy and brushed her teeth, and now she can't pronounced f's or th's.  Looking at her makes me smile.  I wish my Mom was here.  I wish we could call her like we did her other grandparents.  I think to myself, "Nana would love this!"  These are her type of moments.

Of course, we can call her. She's here...alive. Yet she's completely unaware of anything new.  Life, for all intents and purposes, has stopped for her. She's missing these special moments that become our most precious memories and help us deal with the passage of time.  Soon a big new tooth will grow in the empty space and Gidget will be 8 years old. Then 9. And 10...

I haven't been able to share anything new with Peggy for years now. Knowing that she can't enjoy these simple things is what made me sad tonight as I gazed into that bright, shining, toothless face.  I can tell her about them and make believe that she somehow understands.  I guess it's just hard wishing someone was here, when they are.



Friday, December 26, 2014

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.


video
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

Saturday, December 6, 2014

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

Milestones

I haven't posted in a long time, but we are still here, still celebrating life with Peggy.  It was her birthday August 30th and I painted this picture after spending time with her that day.  I was feeling sad and kinda lonely for the both of us, because I knew I was the only one in the room that knew it was her birthday.









Alzheimer's takes milestones and turns them into a big jumbled pile of rocks.


To my surprise I came home, took all those rocks and put them in order and made this painting.  It has 84 candles celebrating each and every wonderful year Peggy has been around.  It makes me happy, not sad to look at it.




So happy, that I even got it framed and hung it in her room.

Happy Birthday Peggy, we love you!

Sunday, June 22, 2014

A Purple Grape Juice Stand!

When life gives you Alzheimer's, drink Grape Juice!  You can donate to through our virtual grape juice stand.  Just click right here.



Saturday, June 21, 2014

The Longest Day

The Longest Day is an awareness campaign by the Alzheimer's Association.


When I close my eyes at night, my mind opens into Peggy's world.  I begin to think how has this happened to her brain?   I see her lying in that bed, close by, but so far away.  Why is this happening to so many people?  Will it happen to me, or my children?  Someone else I love? Why is it lasting so long? The questions just keep coming in rapid fire one after the other,  how will I feel when it ends?  Have I done enough, why isn't there anything else I can do, how can I accept this as her fate...

Alzheimer's is so beyond memory loss, it's the abandonment of life as we know it. What is life if your not living in it?

HOW IS THIS ACCEPTABLE?

Here is a view into just a few minutes of one of Peggy's days.  I show this with hesitation, love and the hope that if people really knew what Alzheimer's turns into at the end of these very long days, maybe we could get that much closer to a cure.










Thursday, April 17, 2014

January, February, March and now it's April

Happy St. Patrick's Day!
Green Juice and Irish Music






Alzheimer's Prevention Inititative

It's been so harsh just watching Peggy lie in her bed day after day, and nothing I can do can help her anymore.  Not my voice, not flowers, gifts, music or her grandchildren.  I found this.  It gives me hope and I can not wait to participate, I wish they would call me today.  It's called the Alzheimer's Prevention Inititative, and it's a way that I can help prevent Alzheimer's for future generations.

Here is a link, they also have a Facebook page.

END ALZ NOW
Alzheimer's Prevention Registry Logo

Wednesday, March 26, 2014

It's been a while...

It's easier to not blog that it is too blog about Alzheimer's these days.  I'm not giving up the fight, or the advocacy or the love.  I'm just taking a break.

Friday, December 13, 2013

Holiday Decorations

Christmas 
I keep a cardboard box of holiday decorations at Peggy's.  It's kind of a sad way to keep track of time because by doing so I can't help but wonder if I should put it back in the box for next year.  This makes me  realize that I have thought that same thing every year for the past few years.  So I ritually put the same old crumply paper indian corn back in the box with the witches broom, stuffed easter bunny, shamrocks, valentines hearts and search for the little nutcracker to take his annual place, hang him up and then gently close the door.
Thanksgiving

Thursday, November 28, 2013

Happy Thanksgiving

This blog makes me think, express myself, and work out what's inside my head to give me the ability to do my best, take care of my Mom, my kids and me.  I feel much better today.  I made an apple pie with the kids, and I'm looking forward to giving my Mom a kiss today. Happy Thanksgiving everyone.




The Past feasting with the Present

Tomorrow is Thanksgiving and I'm feeling guilty about spending another buffet dinner at the old folks home.  Thanksgiving is the time we all have memories based around home. Perhaps it's what our Aunt made, the special china used, leftovers, or the first time we sat at the adult table.  Whatever they may be, this is the holiday where the past feasts with the present.  Actually the whole darn thing is based on remembering that very first Thanksgiving meal. My memories of Thanksgiving are sweet and I especially remember my Mom (Peggy) rolling up the extra pie crust with cinnamon and sugar and letting me eat it right out of the oven, before dinner.

Suddenly I'm thinking, what about Thanksgiving are my girls going to remember?  Every year I am more focused on spending it with Peggy, trying to make it special for her even knowing she will not remember any of it. Instead of creating lovely, sweet memories for Sunny and Gidget, like my Mom did for me.   I know the importance and value of caring for family will be and is a very important part of our family traditions and memories. My brother is coming with his kids and it's going to be a good day, and we will make it fun, the kids will play, we'll be stuffed and the Packer game is on.

But, honestly I just want to make a pie at home with my daughters and roll up the extra dough with tons of cinnamon and sugar and show them that I care about their memories as much as I do about Peggy's.


I Believe




Here is an amazing video of Peggy hearing Sunny's new song she wrote for Reflections this year.  It's called I Believe, and it's an inspiring upbeat song that is so sweet that it cuts right through Alzheimer's and smashes it to the core.  You don't have to watch the whole thing, as I know it's kind of scary to see someone in the end stages of this rotten disease, but when you see how Peggy comes alive as she hears her granddaughters voice, you'll understand why I wanted to show it to you.

Tuesday, November 26, 2013

NBC LA Connections and us

Before it aired I was nervous.  I knew they were going to put in the part when I said "jealous".  Thankfully it came across compassionately.  As you know from this blog, we all love Peggy so much and just simply want her at peace now.  It's not that I don't want this job anymore, it's that I want her to not be upset, or in pain, or for goodness sake, I don't want her to have to choke on her own saliva or food because her throat doesn't know what to do anymore.

 NBC LA Life Connected Video





So many people from near and far have personally taken the time to reach out and spread love and light, friendship, tears and strength.  It feels good, I don't feel nervous anymore, just a little raw.  Thank you for understanding and letting me share our story.  I sincerely hope none of you have this happen to you or anyone you love.

And for what it's worth, Gidget keeps making fun of my sincerity on screen.  I love her, she continues to make us laugh through all kind of sorrow.

Thursday, October 24, 2013

Virtual Sundae



She's not eating, so I talk about food.  Is that cruel?  I think she likes it.  Last night I took her to The Crystal Palace in the Marshall Field's Department Store on Michigan Avenue and we had hot fudge sundae's.  I was little, and so my memory is foggy, but I remember it being special times between us.  Maybe that's how her mind is, a few colors, or feelings, tastes or smells.  I tried to remember too, and how we would spoon out the hot fudge from little silver cups with a long spoon in pink wire chairs. As I talked and tried to remember, she began to move her mouth and chew, she really enjoyed hers, and I mine was good too.

Does anyone else remember that place?  I found this fun blog that did.

http://rememberingmarshallfields.blogspot.com/2009/11/crystal-palace.html
That could be me and Peggy in 1974

Friday, October 18, 2013

Point of View


Gidget's Drawing of Peggy

I see Peggy more clearly now.  I was over a couple times last week and she's been responsive in the first few moments I arrive.  When I give her a kiss and tell her that "it's Lois" she leans towards me.  It's acknowledgement, it's her way of... a hug?  Then she goes back.  Is that what I needed?  A hug from her.  Such a small gesture helped me realize that I'm here, that I matter and that she still matters.  I now feel that I can see Peggy the way Gidget does.  Standing tall on earth with lots of life still all around her.

Wednesday, October 2, 2013

Our Story

We shared.  Colleen Williams from NBC Los Angeles News came over yesterday with her amazing producer Mary Harris and camera guy Sergio.  They are doing a story on us and how we use art to deal with Peggy's Alzheimer's.  They were wonderful, the kids were wonderful.  Sunny sang her ukulele song and Gidget drew the most beautiful picture of her Nana.  Gidget doesn't draw Nana sick in bed.  She draws her standing with pants and shoes, outside with flowers, bees, and butterflies all around her.  I learned so much from that drawing yesterday.  When they asked her to describe her Nana, Alzheimer's wasn't even part of the answer.

We had a pretty intense interview and I said very honest things, especially about the end stages, where she is now.  It also made me realize that my Mother doesn't really have a voice in this story.  It's just us on the outside looking in.  And now the audience will be on the outside looking in on me, looking in.  I went over to her house last night and brought her flowers, and kissed her.  I hope I'm doing right by her.  I know she wouldn't want people to think of her like this, or remember her like this, or looking "awful".  I hope they see her the way Gidget does.

I love you Mom

Saturday, September 28, 2013

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!

Wednesday, September 25, 2013

A busy life

My life is so busy right now.  We are starting our own business.  Nary Dairy, it's crazy, it's all the time, it's fun, exciting, scary... its consuming.   I fell asleep exhausted, but only for a little while and then I woke up and I realized that I didn't see Peggy today, or yesterday.  In the darkness my memories of her intermix with where she is now, and I keep finding things there that weigh heavy on my heart. What she would of loved, what I missed.  I start to see time backwards.  It was my 15th wedding anniversary yesterday.  A slideshow starts as I go back and remember 15 years ago. There were signs of ALZ then.  But it's now, and she's here, even though it seems as if she's not, she's just a few miles away in a bed.  Everything is happening so fast and so slowly.  I feel badly that I want it to be over, and now I realize that what I really want is not for it to be over, but a DO OVER.  I want this disease to have never happened to us, and what I really want is it not to happen to anybody else. I think about the other people dealing with this in much more difficult situations.  And my mind just continues to roll around in it, back and forth in time and memory.  So much that I have to get up to stop thinking about it.

So, now I will watch Stephen Hawking, or NOVA and fall asleep, listening to something that takes me out of my mind, so I can stop thinking about what happened to hers.

Monday, September 16, 2013

Visiting?

So Peggy has calmed down a little, and so have I.  Every time we take another step down this ALZ staircase it takes an adjustment for her and for me.  I was talking to Ruby about what is happening and what exactly this stage entails.   I was upset that Peggy seemed very uncomfortable because of her swallowing and coughing, and she said with kindness.  "If it bothers you to visit, don't come as often."  She was worried about me and caregiver burn out, because she has seen it many times before.  But, that's not what  I was worried about, I was worried about Peggy.  I know this disease is just as hard on the caregiver, but Peggy is the one that is slowly dying. Whether it's for weeks or months or years. That's what it is now, dying, not living.  How can I NOT be there for her at this time?  We've made it this far together.  So, I visit, just as often or maybe even a little more because I have accepted where we are now, and if she's sleeping and doesn't know I was there, I do.