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!

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.

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. 

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."

Grape Juice to fight Alzheimer's

Purple is for Alzheimer's, so we sold purple grape juice at our garage sale and donated the money to Alzheimer's Research.  I feel it's the only left we can do to help Peggy.  

No sense

This is a difficult feeling to place into words, but what I really want to say is this...

There have been very special people in this world who's lives have been cut short, way too short, while alzheimer's just lingers on and on and on.  If I could, I would ask to please take Peggy instead. 

Life doesn't make sense.

Yesterday was awful

She was agitated, fearful, infant like, and scared.    

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.

Happy Mother's Day

a picture from her granddaughter

flowers from her son

    

I think they mean more to us than her these days...

Do you know the way to San Jose?

We sure do, because we drove up there for Sunny to get her award from the California PTA for her song "I Remember" that she wrote about her Nana.  Expenses were paid, and we had a great time.  She brought her ukulele just in case they wanted her to sing.  She's a natural performer.  They announced the National winners, and Sunny's song didn't win, and she felt slightly dissapointed.  But, when she got up on stage, she brought the house down without a dry eye.  Making that connection, being able to share her song meant more to her than the award as people from all over gave her a hug, and told her how wonderful her song was and that it had such meaning for them, because they also have people in their lives with Alzheimer's. She's awesome.

Here is a video of her singing it there.

Not knowing

Peggy doesn't  know about Newtown, or now the Boston Marathon bombing.  I visited with her yesterday, sometimes I just end up there when I should be doing something else, especially on days when the news is so heavy and painful and sad.  She doesn't have to add these events onto her shoulders that are beginning to weigh heavily on to mine.  So, in a weird sense, she gives me a tiny respite, where I can push the rewind button, and just be with her in a place

where bad things don't happen anymore.   

This is Alzheimer's

Thank You Marshalls!

Peggy Lu and I buying new shirts for Peggy

Thanks to Marshalls,  Peggy Lu and I went shopping and bought Peggy some very much needed new shirts in bright colors, and fun styles.  Fashion and looking good was always a huge part of my Mom's life, and she looks so pretty in her new shirts.  Marshalls helped raise awareness and funds in their stores in March as well as it's multi-year million dollar pledge. I love shopping there even more! 

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.  

Connecting to Combat Alzheimer's

The day I wrote the previous post, this showed up on facebook.  An organization to help connect alzheimer's patients and caregivers with research opportunities. I'm going to look into it further.

Connecting to Combat Alzheimer's Info click here

Her brain, my brain, our brains.

Peggy had been shouting out, alot.  Agitated?  Not really, just a big "Hiiiiiiiiirgh" out of nowhere.   And not just when moving or touching her.  "Hiiiiiirgghh" It would startle the heck out of you.  It reminded me of Tourettes Syndrome.  So, I mentioned this to her doctor.  Now she is on Haldol a drug used to treat Tourettes.  Of course we had to experiment with the dosage, but she is reacting really well, and not as agitated or vocal.  Here's the thing.  I don't know anything about Tourette's (like how to even spell it) or Alzheimer's, and if I can make a suggestion that works, don't you think we need a little more research about the whole damn disease.  I wish Peggy was in a lab, under a microscope in an MRI machine all day and night to see exactly what her brain is doing, how it is dying, how and what drugs do to her brain activity.  She wouldn't know, she would be the same, but the world wouldn't.  I've signed her up at USC, but she only goes once a year, and they just kind of look at her and take a few notes.  This year it was over the phone, because it is so difficult to move her.  We could learn a lot from Peggy, and she wouldn't be lying there for no reason.  

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!

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.