Her bracelet

I'm not a fancy gold bracelet kinda gal.  I'm sure to scratch, get paint all over, or most likely lose it. But what's the point of keeping the good stuff tucked away in a drawer, or only bringing out her fancy china for company?  If I get a little paint on it, or a dish breaks while having a tea party with my daughter it'll have the wear and tear of real life and these are the joys I'd love to share with Peggy now.  So I try to enjoy the things we do have and  I wear her bracelet all the time now.  

 It always looked so pretty on her, and it still does.

Fancy jewelry and the good china

A very special tea party with Gidgey and Spots when she was  2.

Oliver Sacks and Me

"You can't see me, but I know you can feel me, because I'm right here."

Oliver Sacks blew open my mind.  He taught me that people don't see the world the same way I do. They don't taste things the same way, they don't feel things the same way, or even remember things the same way.  He showed me people navigate life in all kinds of unique ways.  Why were his scientific, non-fiction books so enthralling?  It's because his stories were honest reflections and observations about people.  He didn't refer to people as mental or retarded or diseased. We're all just people.  Our brains have different ways of seeing and being in the world. These individual stories gave me a better understanding of the human existence.  Through his observations and stories he excited, fascinated and encouraged me to explore my own vision of reality through my art, feelings and relationships.

What I didn't know when I first read his book The Man Who Mistook His Wife for a Hat two decades ago is that his words would give me the patience and empathy I would need today, as my Mother continues to delve into the depths of Alzheimer's Disease.   My reality become skewed as the natural  time line from daughter to mother and grandmother began to wobble  The tables turned and I had to care for my Mom as she went backwards mentally and began seeing the world through a completely different lens and time zone than me.  It has been an arduous road fought hard with love, but sometimes despair in the lack of understanding.  Over the past 12 years I have gone back to Oliver Sacks' words for comfort, insight and strength.  He knew disease didn't define the person and that understanding was as important as a cure.  Although this quote is not his, he experienced the value of its insight and believed it was important to share, just like the stories he shared about the people he studied.

The animating theme of Sacks’s work is the importance of individuality in medicine. He quoted Sir William Osler with approval – “Ask not what disease the person has, but rather what person the disease has” – and wrote in Awakenings: “There is nothing alive which is not individual: our health is ours; our diseases are ours; our reactions are ours – no less than our minds or our faces.”

Oliver Sacks Obituary

Our final journey

Lois and Peggy

I actually got very scared the other day, and felt like I couldn't possibly do this anymore.  That Peggy was so close to death, and frightened that I had a bit of a panic attack.  I am used to the way she looks, and breathes with her mouth wide open, and struggles to swallow, the way she shouts out, the crippledness of her body. I am even getting used to how she can't see anymore, her beautiful blue eyes wandering around in darkness, like her mind.  I panicked because I didn't want this to be normal anymore because I am also used to hugging her, caring for her and loving her.  If Peggy was my beloved pet, as she is my beloved Mom I would take her to the vet immediately and gracefully help her go.  I would hold her hand, kiss her, make sure she knew she was loved.  But, instead I have to leave the room, leave her, and say goodbye, only to come back another day and wish the same damn thing. Why is there no way for me to do that for her?   I've helped her every step of the way, and I want to be with her until the end, for the final stage of this horrible disease, death.

It's hard to do this alone, and I have since gathered my strength by phoning a few friends and letting my guard down.  My very best friend, my husband went with me the next morning with pink roses and held my hand and hers.  Today is a new day, and we will just keep walking and continue our journey until we reach the end, whenever that may be.

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.

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

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!

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.