Quality not Quantity

Paul and Wendy were able to make it out to see Peggy.  They were here for a conference in Newport Beach.  Great, they can drive over and see Mom for the afternoon and have lunch with me and the girls.  Great idea!  No problem, it's only 35 miles away....NOT IN LA!!!  They were stuck in traffic, so it took 2 hours to get here, and 3 to get back to be on time for their evening dinner.  Which means 20 minutes with Peggy....
But, you know what, it was worth it.  I'm so glad they made the effort.  What is it that they say quality time, not quantity time.  That is really true with Alzheimer's because there is no concept of time anyway.  And even though it doesn't seem like she knows what's going on, we have to continue to show her love and that she is part of our family and include her in the conversation even when she can't participate.
So, go visit your elder people, people!

Peggy, David, Lois and Paul

Click here for a link to Paul's company, it's a great story and even better immune boosting product.... Epicor

Ice cream

Lois- "Mom, What's your favorite flavor? Chocolate or Vanilla?"

Peggy- "Barbecue"

Momofuko Milk Bar

Kohler Art Center exhibition- MEMORY

I went back to the mid west this week to visit family and friends.  We usually only go back for a few days and split our time between Milwaukee and Chicago, and never have enough time to visit everyone we want to see.  THIS time, I really wanted to make an effort to see my artist girlfriends, Erica, Rachel and Anne.  We used to share studio space and coffee together.  I hadn't seen them since I left, and having trouble making art these days, I needed some inspiration from these gals, who are struggling to do the same.

Erica works up at the Kohler art museum in Wisconsin.  One morning I had just enough time before I had to catch a train to Chicago to run up there and see her.   I burst into the museum to find her waiting for me, her eyes bluer than I remembered.  The girls played in the amazing ARTery, an interactive art making space for the public, that she runs.  She had a meeting, and encouraged us to check out the exhibit.  Which just so happened to be called "HIDING PLACES: MEMORY IN THE ARTS"
Kohler Art Museum please click here for lot more information on the exhibit and center.

So, we went in...there were four categories... Holding Memory, Forget Memory, Shared Memory,  and From Memory.  We walked right into these hanging tangles of wires, with blinking lights, tiny television slide shows and creepy music.  I said to Sunny, I feel like we are inside Nana's brain...turns out, it was a piece on Alzheimer's.  We were enthralled with the exhibit.  But, for me it was very, very sad, and quite disturbing.  Every piece resonated in my heart about where Peggy is.  How I have to leave her there all alone with her brain.  Sunny was scared and very upset about a particular piece.  It was large rooms, with sand and it was dark, and images flew by on the wall.  There were set like pieces from life, a dresser with pictures, a bed, large dresses hanging from the ceiling and writing on the wall, snippets of life.  The artist' mother had Alzheimer's.  So does ours.  So many pieces dealing with memory, were sad.  There were not many beautiful images, or  I dare I say "fond memories"

I was happy to see Anne Bastings was there, and frequently shows up and talks and does workshops.  If you read this blog, you'll remember the day I found her book "Forget Memory" which helped me change the way I see Peggy.  And David Greenberger,  who puts Alzheimer's "musings" to music.  These guys are all trying to help communicate and love people without focusing on their memory, or loss of it.

There was an interactive piece, and I encourage you to do it now.  Take 10 pieces of paper and write anything that is important to you, or something you like on them.  It could be a person, place or thing... I chose family, daughters, dogs, garden, art, friends, home, husband, coffee, reading.  (not in any particular order)  NOW fold them up so you can't see what they are.
Throw five of them away.......you are in the beginning stages of Alzheimer's
Open them up and see what's left, fold them again and
Throw three of them away.... you are in the middle stages
Open up to see what's left, fold them up and now throw two more away
You have one thing left.....you are in the final stages.
I was left with garden.  Nothing else, no daughters, dogs or husband.  No art.

Erica Jane Huntzinger, at the Kohler Artery

The exhibit was challenging, moving, creative and thorough.  You could spend a weekend there in lovely Kohler Wisconsin on the shores of Lake Michigan and then make art from all the things you learned, and contemplated, imagined and saw for another week.  I think you'd come out a more sensitive being.  I only had two hours, and that included another hug from my dear friend, with whom I do have lovely and fond memories and will cherish all of them, whether I remember or not someday.  

One block away

I've been working at the pre-school one block away from Peggy's house.  Knowing she is right there inspired me to paint this little mural of us reading under a tree.  We used to always go on picnics at Cantigny in Wheaton, IL
Anyway, I've been able to stop by quite often and at different times of day and night. Not that time has any meaning there.   It's nice to be able to say hello and goodbye more often, even though she always gets mixed up.   I say hello and she says goodbye.  Hey isn't that  another great Beatles song?

Remembering me and Peggy

a lot of help!

Sometimes I have a little help

Having fun at Nana's, sort of.

 

We bring Ginger over and they all go crazy and run around.

I'm not sure FUN is the right word, but the dogs and Gidget seems to think so.  I don't expect as much from Peggy.  She used to paint with us, now she watches, she used to pet the dogs, now she pinches, but Gidget still makes her smile.  Although, I have to be careful with them now.  Peggy pinched her pretty good the other day, and the look on G's face was kind of heart breaking.  It took her quite a while to recover.  She thinks Nana is funny.  She knows Nana has a disease, but when it's someone you love you don't think they are going to pinch you too.  

We bring her into her room, to hang with us...

On the way home we were listening to the Beatles song Hey Jude....at the end when John Lennon sings that crazy nananannanannanna part, we all laughed because it sounded like Nana. 

Not just the word, Nana, but actually sounded the way Nana tries to talk to us with her stuttering.  The kids, they want to understand her, and love her even when she can't really love back.  :(

We paint her pictures

Wise beyond your years

  Peggy seems to be doing okay....She is getting used to the place, and they are getting used to her.  I didn't see her for a whole week....and that was okay.  I know my Mom wouldn't want me to worry so much.  I wouldn't want my girls to have to worry about me in that way.  She would want me to be at their recital, and school play and be with Allen and read, and paint and work.  All the things she taught me and encouraged me to do as my Mother.  She always said to me "You are wise beyond your years."  Sometimes she meant that in a good way, and sometimes not.  I'm afraid the years have now surpassed the wise part of that statement.  She also used to tell me "My eyes were bigger than my stomach"  Unfortunately that is no longer true either.

That's Sunny on the far left.

G at Ballet class

Anyway, I do think that it was wise having Peggy Lu visit.  She relieved a lot of pressure on me, and I can go back to including Peggy into my routine, instead of making my routine specifically around her. 

Scientists Discover New Direction in Alzheimer's Research

Scientists Discover New Direction in Alzheimer's Research

"I'll love you forever."

We had a great visit with Peggy Lu.  It makes it easier to go over to the house with someone, because when we sit and chat together, Peggy gets into the conversation, she mumbles, and stutters, and shouts, and smiles, and drinks her tea and participates, in her own way.  Instead of me just staring at her asking questions, wanting answers.  So, I guess my advice for today is to include your alzhiemer's patient in as much as you can.  Don't expect a lot, but you might get a surprise like a bite, or maybe even a coherent whisper like  "I'll love you forever."  That's what Peggy said, when Peggy Lu said goodbye to her last night.

A wonderful visit

Peggy Lu, my dear cousin and Peggy's niece is here from New Hampshire.  I have been preparing her for the visit on the phone and through this blog.   She was nervous.  I was nervous.  My family has trusted me to the care of Peggy.  Ultimately I am making all decisions for her right now and that has been stressful for me because it has been a very difficult move, which was expected...but if you've read the posts before, I wasn't prepared for HOW difficult.  I guess the lesson here is, you can't really be prepared for any of this, you just deal with the hand you get, every day.  
So, what I'm trying to say is this.  We had a wonderful visit yesterday!!!!!  Peggy Lu loved Peggy's new home and her room, and the people there.  This made me feel good. To have someone else say, "yes you have made the right decision" that cares as much about Peggy as I do, gave me such a sense of relief.  But, this post is not just about me...

Peggy Lu walked in and there was Peggy in her chair, and she looked and looked and smiled and got excited and reached out and she didn't know Peggy Lu's name, but she KNEW that it was someone she loved, one of her people, her family.  She held her hand and said "it makes me want to cry".   OH!  We were so happy.  Honestly this is the best Peggy has been since she moved in.  It was unbelievable.  Peggy Lu came at just the right time, and hopefully Peggy will continue to adjust to her meds and environment.  Or maybe, today we just had all the right combination of care, love, medication and family to make a really great day.  I'll take it!     

Stages

So I kinda feel uneasy about posting the video of Peggy.  I don't want to scare anyone that might be headed down this path.  Just this month, two of my dear friends in my neighborhood have had an alzheimer's diagnosis in their family.  One thing I heard on the Larry King Show that hit home was that the founder of  the Lou Ruvo Center for Brain Health  decided not have any waiting rooms in his facility.  BECAUSE when his Dad was going for testing, he was in a waiting room with patients in different stages of the disease.  His Dad saw his future, and well...that's why his son, now has no waiting rooms.

I remember looking at Sunrise here 2 years before I decided to bring Peggy out to the "reminiscence center for the memory impaired" That first time I went up there, I was frightened and knew right away, she was not there, yet.

So here we are today, 4 years later from that first visit.  6 years from moving her to Assisted Living, 8 years from Independent Living and her first diagnosis.  The other thing is that not every patient is the same.  Besides there a lots of stages to this thing.

The stages are fundamentally different,  but you don't know that until you get there.  It is all bearable.  It is the unknowing that I have always struggled with.  I always wanted to know how this exactly was going to play out.  The truth is, you don't know until you get there.  It's like you are in the present that has an empty past and no hope for a future.  That sounds so dramatic and awful.  So, I have taken the stages in years, and months, weeks, days and now minutes or even moments.

Adjustments

I'm adjusting.  I went to Whole Foods for flowers and coffee.  I tend to go there before I visit Peggy.  A little breathing space before I go see her.  I'll pick out some flowers that I think she might like, something seasonal, something to talk about.  Or I'll get something she might like to eat, something I might like too.  A treat, or fruit, or... Today I couldn't decide.  I kept picking something up and putting it back.  I blankly wandered around with a sadness that even the bakery section couldn't hide.  I felt defeated.  Nothing was going to make her better.  Nothing I could buy or do would make her better, even for a moment, like it used to.

I finally decided on a bag of oatmeal raisin cookies, a large coffee (for me) and some yogurt for later and left.  Drove to the house and went in.  DING DONG the bell always goes off announcing my arrival.   I pull a chair up next to Peggy and sit down.  I told her about the cookies, and she wants one.  She gobbles it all up like the cookie monster.  She loved it.  Oatmeal raisin cookies have always been her favorite.  And you know what?  They still are.

So I settled in and adjusted to our new norm.  I held her hand, she held mine extra tight. She lurched toward me now and then, but I knew when to back off.  I talked about golf, and mentioned old friends and family names.  She nodded, she smiled, she got crumbs everywhere and I did too.

                                                                      cookie monster

Larry King, The Alzheimer's Report

So, this is not easy to watch.  I want to show it, so you can see what Peggy is dealing with.  Why we need more research and funding and attention to this disease.  Because as you can see...Peggy loves us, but can't show it, other than through aggression.

Did anyone see the Alzheimer's report on Larry King?  Here's what I took away from it.
THANK YOU to all the celebrities and families that spoke up.   Larry King seemed to think that the worst  thing about this disease, was the forgetting.  Yes, it's true there are different stages, and forgetting is part of all of it.  But remember this a progressive disease, you go from forgetting a name, to forgetting how to swallow. And now that my family is in the end stages, I see why at the beginning, no one was totally honest, or maybe I couldn't grasp how long and difficult this road is.   Angie Dickinson was awesome, her advice was to visit, hold, touch and love the Alzheimer's patient.  Her sister had an early diagnosis.  And when Larry King asked her what she would say to someone who was just diagnosed, she looked honestly at him, paused and said "Oh, shit."  Brutally honest.

Maria Shriver loved her Dad, and it is unfathomable that a man like that could take such a mental fall.
Judd Apatow and his wife are younger than me, and are reaching out to let everyone know that it is not just an old persons disease.  Because the caregivers, whom are just as effected are the generation before them.  Leeza Gibbons, having been there herself knows this, and her objective is to take care of the caregiver.  As Ron Reagan stated, there's a flip of the coin in this epidemic, either you are going to get it, or take care of someone who does.

Depression and Dementia research in elderly women

Research into depression and dementia

She bit me.

So I had a lovely mother's day with the kids and Allen and my mother-in-law Beverly.  Took the girls to the Studio City Farmer's Market I got beautiful cards and earrings and we went out to eat at Canters Deli for corned beef and pickles.  Yummm.  We stopped at the Melrose Trading Post and Flea market and came back home and ate our bakery treats and coffee.  The kids were playing with Ga Ga (ie:Beverly) and so I decided to go see my Mom by myself.  They don't get to see Beverly very often.  I picked up a lemon meringue pie and some berries to go with it.  Another yummm.

I came in with the pie, and everyone smiled.  PIE!  I bent down to give Peggy a kiss, and she was so excited.  She bit me.  "OUCH! Mom you bit me?"  I said.  "Why did you do that?"  Peggy whispered, "I'm sorry, I'm sorry" and had a manic smile on her face.  I know she didn't mean to.  I know it was a reaction, I know all these things.  But, it still hurt.  It hurt in more ways than one.  "Well", I said to the others.  "Peggy's awake!"  Yes, so Peggy is awake, but she is having these almost tourette's like tiny episodes.  Where she will swear at you and then say I'm sorry, I'm so sorry.  She will say "Shut up" out of nowhere, and her arms and legs will try and hit or kick anyone that is near her.  "I'm sorry, I'm sorry, I didn't mean to do that"  she whispers.  And it's gone and she's there again, in her chair.

We ate the pie on the patio, I took her for a walk around the block.  It was a beautiful day.  She seemed to like it.  She seemed calm.  We hung out in her room and looked at pictures and listened to music she was calm, and as I went through the old box of photos of me and her.  I cried.  I cried because it's hard.  It's hard taking care of her.  Pie and cards and walks and drugs, or no drugs are not helping her.  Or maybe I should say they aren't helping me anymore.

And then I read this poem I found in the box. This is going to go into another subject, and I usually like to keep these posts short, but I guess this is going to be a long one.  I am an adopted child.  My Mom Peggy has always been so supportive of who I am and has always wanted to know where I came from.  She has helped me put my name on lists to find my birth family.  She always wanted to meet my birth mother and so have I.  That's why I have over the past two months began a search to find her. So this is the poem I found in the box. When she reached out her hand for mine, we both cried.

Once there were two women who never knew each other.

One you do not remember, the other you call Mother.

Two different lives shaped to make you one.

One became your guiding star, the other became your sun.

The first one gave you life, and the second taught you to live it.

The first gave you a need for love. The second was there to give it.

One gave you a nationality. The other gave you a name.

One gave you a talent. The other gave you aim.

One gave you emotions. The other calmed your fears.

One saw your first sweet smile. The other dried your tears.

One sought for you a home that she could not provide.

The other prayed for a child and her hope was not denied.

And now you ask me, through your tears,

the age-old question unanswered through the years.

Heredity or environment, which are you a product of?

Neither, my darling. Neither. Just two different kinds of Love.

nature vs. nurture self-portrait that I did and hangs in Peggy's room.

Much better!

Peggy is much better today!  OMG.  Can you imagine having a toothache and not being able to tell anyone, even yourself?  So the drugs are leaving her system and she was awake and I brought the flowers Paul sent and we played with make-up and she loved everything.  I am smiling.

Let's go see

Let's go see if Nana is awake.  Gidget gave me the thumbs up!  She's not...thumbs down. Peggy is not on any drugs at all now and getting her blood checked.  She's drooling up a rainstorm, and I thought it could be her gums.  So we took her to the dentist today.  Everyone was so helpful and understanding, even Peggy.  They cleaned up her mouth and hopefully we'll be able to stay on top of her dental care. It's tough when she won't let you help her.  Prescription anti-bacterial mouthwash should help, as she was able to follow directions to swish and spit.  She has so much drool, she is just gagging.  I thought maybe she was forgetting to swallow.  Linda doesn't think so, because she is eating fine.  Forgetting to swallow is one of the very last stages.
I'm feeling she and I are in a downward spiral.  I keep going over there at different times of day, even night to see her, and I can't find her there.  She's lost in this internal place. She knows it's me, I hold her hand and she grabs mine tight as the rest of her mind spirals down away from me. I want to be able to let her go, so she can catch up with her mind and just rest.  But that's not the way this disease works, it's a very slow drain that is hard to fix.

We are not alone

Alzheimer's Caregiving So Scary

Vacation

I went on vacation Friday to Sunday.  It was really special.  I love spending time just with the girls and Allen and our puppy Ginger.  California is beautiful.  (See picture of rainbow) We went to a place called Rancho Oso.  We rode horses, hiked, hung out, drove around, bought jelly.  The best part was that I didn't think about Peggy the whole time.  I realized it driving home, looking at the Pacific ocean on the 101.  I hadn't thought about Peggy for over 2 days.  It made me smile.  Not because I didn't want to, it just happened.  It was like she didn't have the disease.

Gidget and I went over there yesterday after school.  She's still not on track.  Now she is up at night in a psychotic manner, trying to get out of bed and talking all night.  No wonder she is exhausted and sleeping during the day.  I don't blame her.  It must be so hard for her.  The meds are changing again.  She now will be on Rispedol only at night.  That's it.  The depacote has been gone for a while.  The Paxil is finally getting out of her system.  I just wish for some peace for her.  She was trying to get out of her chair.  She squeezes my hand so hard, with manic intention, that it hurts.  She pinched the dog.  She grabs.  I make sure Gidget doesn't get to close because she will pull her hair.  But Gidgey is not afraid.  I'm still totally amazed by her.  She hangs out with us, she talks to Nana, even when Nana doesn't respond.  She gave her chocolate.  I wish Peggy could see her, and really love her the way I knew she would if this damn Alzheimer's didn't get in the way.  Peggy is still there.  We played the baby animal game. "What's a baby cat?" I ask, "A kitten!" shouts Gidget and Peggy "MEOWS". 

G giving Nana a chocolate egg from the easter basket she made for her.

What's today?

Monday.  Okay, yes Peggy is awake.  We are getting closer to her baseline.  No drugs.  She kinda still goes in and out of psychosis.  She is manic talking again...remember that video about six months back...  I just pat her hand, tell her it's okay, and she'll relax a little.  Here I am complaining about too much talking when a few days ago I was so upset she wasn't talking!  Typical Californian, it's either to hot or to cold, never rains or to much rain.  Sonny and the others are getting to know her better, and what sets her off.  Apparently Sonny is no "Bono", but his singing does help change her.  I remember back in Wheaton, Claudia used to sing with her as well.  God, I remember going to see her that summer when I decided she needed more care and how Claudia was doing the best she could every day.  How she yelled at us, and was getting really manic in moments.  And here we are today.  Same person, different place, same disease, different treatment.   

Gidget's asleep and Peggy's awake!

  Linda called me on Monday, Peggy is up, she's eating, talking, she's awake.

I got over there on Wednesday (I actually had a paying job this week) and...she's asleep.  Totally asleep, in her chair, won't open her eyes, won't eat, won't. won't. won't.  I called Linda, she called the Doc...ups and downs, in and out of psychosis.  Let's monitor her, we need to get consistency so that we can actually help her.  I believe them, Sonny looked right in my eyes and shook his head.  She was awake?  So...I go home before lunch...I can't stand to try and shove food in her mouth again.  Is it me?

Today I stopped over and Peggy was awake, and Gidget was asleep!  So we chatted, she tells me
 "I love it here"  "You are so beautiful" and we drank tea.  She held the cup.  I watched her eat with a fork, by herself!  Here is the Peggy we know and love.  A little talkative, very smiley, slightly agitated and best of all awake!  I'm so glad to see her.  This is the first time in a month I am confident that this was the right move.  Now, with some consistency we can make her very comfortable and loved.  I hope she sleeps well tonight, I know I will.  

X Y and now Zyperexa

Saturday- went in the evening to see Peggy...sleeping in bed at 7:30, back to being groggy, and mumbly, and drooling. We watched TV, she seemed to enjoy it.   I brushed her teeth. Bloody on one side.  She's not letting them brush her teeth.  SO, what that means is she is knocked out, yet still lashing out.  Not a good combination.

Sunday- We all went to see her in the afternoon.  Still groggy, still mumbly, still drooling.  WHAT IS GOING ON!  I'm frustrated.  They know I am.  These changes in meds are hard to bear.  Could it be the depakote?

The doc took her totally off of Risperedol and is now trying Zyprexa....let's see how this goes.  He also completely stopped the Paxil.  I'm going to see him again on Thursday, and hopefully we can get Peggy to a place where we are all comfortable.

The thing about Alzheimer's is that she's probably totally comfortable, quite happy as a clam.  She doesn't even feel pain!  Like when I brushed her teeth, she winced a little, and I asked her if it hurt, she tells me "no".  She doesn't know a thing is wrong with her.  When I ask her, she always says things like
"fine, wonderful, beautiful..".  When Sonny her caregiver asks her, she tells him to "Shut up!" 
What am I supposed to do with that?

Bee

Bee hanging with Nana in Chicago.

Unconditional love.

Bee is my dear old Jack Russell Terrier.  She was 14 and died suddenly yesterday.  Allen and I got Bee when we lived together in Chicago.  She was our bond that made us a family.  She's the reason we got married.  No! Not out of wedlock, but because we both loved her the same.  We knew we could have a family together for the rest of our lives by the way we both loved and took care of her.  Then she loved and took care of us.   She was quite the old lady,and rather grouchy towards the end. She'd would sometimes growl or show us her remaining teeth, kinda like another old lady that we know and love.  And we loved her, all the way to the very end, and we miss her very much.  She was a special chapter in my life that I'll keep close at heart forever.

See you later alligator...

Peggy's talking.  She talked to me on the phone.  She said Hi Lois and that she was at David's house, everything was fine,  I love you too,  and see you later, alligator.

I had called Linda earlier today...worried.  I feel the need to wake her up! It's the hunched over, kinda drooling thing that's the weirdest and most unlike Peggy that I am most worried about.  She called me back, and we talked and discussed and analyzed and decided to wait until Thursday to have the Dr. look at her again and just keep working with her.  Okay.  She also told me I was being very brave and was bragging that we were one of the best families she has worked with, and empathized with me.  Okay.  I'll wait.

Well... I didn't have to wait long.  When she went over to the house, Peggy had finished her whole meal and drink and was chatting.  So...she put her on the phone, and that's when I talked to her.  She's coming back, and settling in, and I can't wait to go see her tomorrow.

Sounds of home

There is a piano at Peggy's new home.  The place is good.  It sounds like a home.  People coming and going, dogs barking, my Sunny on the piano,  Gidget running around, TV on, people in the kitchen. Other family members are there, visiting and talking.  I really think she will like it here.  If she wakes up.  Come on Mom, wake up.  Open your eyes.  She's still not totally with us.  She's there, sometimes.  I'm not  sure if she is checking out herself, or if it's the drugs.  The wait and see approach is really really really hard for me.  Saturday she was still out of it.  Sunday, still out of it and even drooling.  But she'll wake up and smile and mumble a little...I don't know.  ugh.  I call, they call, we check, vital signs are good.  We are getting her to eat and drink, but it's a chore.  I don't know.  Change is so much harder than I imagined for her, and me.

Really...

I mean really, this is the most reverse disease.  Peggy doesn't know she has it, and when we as caregivers try and help her, she abuses and lashes out at us.  What kind of disease is that??