Follow Up and Follow Through- Decrease Namenda 1/2

So this is a reminder...no pun intended.  We have discussed taking Peggy off of Namenda for over a year now, and something else seems to always take the forefront.  So, called Dr. Stern...he followed up and today so  02/21/2011 we are decreasing it by half.  Now, I have to monitor her for three weeks...

Articles on Alzhimer's prevention...yeah, yeah, yeah.

"Brisk Walks May Boost Memory in Older Adults"

All these articles are great, but the fact is Peggy walked...alot.  Even when she was in her late 70's and in assisted living...we actually worried about her walking.  She always walked, every day in some way.  Either through golf or tennis, or just walking the dog.  For goodness sake she did YOGA in the 70's!  She'd sit indian style on the shag carpet in her black leotard and panty hose and  do the lion's pose and stick out her tongue just like the lady on channel 11.   We all thought she was crazy!

OMG I just found her on you tube!!!! Lilias Folan

"



 Then when she brought home tofu!  We really thought she was loopy!  My mom loved healthy living and didn't smoke or drink (a lot), or swear for that matter.  She was the only person that shopped at the only health food store in Wheaton, Illinois.

So, I love these articles, I do, I'm sure they are good.  We should all walk and eat the right foods.  But Alzheimer's is Alzheimer's and there is no cure.  Not until enough research and money is thrown at this DISEASE, because that's what it is, a disease not a lifestyle or choice.

Love is a Rose....

We went to Sunrise yesterday for Valentine's Day dinner.  It was lovely, just like last year.  Here is a little movie of it.  The girls get dressed up, we get our own dining room and Beverly is here from Milwaukee.  Peggy came in, and she responds to all things lovely.  We all gave her big hugs and kisses, she smiled. Then Sunny handed her a rose....and she ate it.

It's okay to laugh.  We did.   Happy Valentine's Day everyone.

http://www.sunriseseniorliving.com/

Lois's Art Blog: Illustration Friday-REVERSE

Lois's Art Blog: Illustration Friday-REVERSE

Blogging

Here is Peggy last month at USC for her Alzheimer's research study.  Here I am on the internet. 

As I was walking in the other night to see her, I began thinking about all the stuff I hadn't "updated" on the blog.  Peggy Lu's visit, the cherry pie my girlfriend gave me, the girls, my girls, my precious little girls and all the wonderful things they do and say.   Of course, I got "side" tracked as you can see by my previous post. 

 Why do I do it?  I started this blog to give people back home updates on how she is doing out here in California.  But this blog, has become bigger than that.  I want to raise awareness of this personality robbing disease.  

 The look in her eyes when I put her to bed yesterday made me feel her.  I'm ususally just trying to "manage" her.   She pulled my hair, and looked at me, like I was hers.  It was brief, it was beautiful, it was quiet. 

People say that it effects the family more that the patient, I disagree.  In that look she gave me, I felt her loss.  She is here, but not.  Imagine if it were you. I thought of my girls looking at me, and me trying to look out and reach for them, but couldn't.

Participating in research studies.

I don't want this to happen to other people.  I still know the power of all the good attitude and positive talk and the acceptance of Peggy.  But the plain fact is that her brain doesn't work anymore.  She can't take care of herself, and doesn't know up from down or how to get her body there. 

Please share this blog, tweet it, follow it, whatever.  Let's make this research really count.

Thanks.
Lois

What does THIS mean?

Why is she so crookedy?  I went over last night on my way to my writing group to see how her cold was,and to give her some nighttime medicine...and this is how I found her.  Why is she so leaned over and sideways?  I'd try to push her up and she would go back over.  She didn't even know she was sideways.  Everything else pretty normal, well, normal in our world which is actually the complete opposite of normal.  I mean blood pressure, vital signs are normal.  Yet, she can't walk or hold herself up.  Started after breakfast yesterday.  Taking her to the Doc today.

11, 10, 9, 8...

Eight.  That was her assessment for this year.  I took Peggy to USC for her annual review because she is participating in the Alzheimer's research program there.  When I first brought her there she was at 11.  Now she is at 8.  What does that mean?  Well...I think this video represents it very well.  Like it says, 8 turns around upon itself.  So, instead of getting frustrated about not really ever getting anywhere with her, I'm just going to sing this song, one of my favorites from School House Rock.

Remember Me Always

My girlfriend Harlee has created a really neat business helping people create documentaries about families .  I think it's wonderful, and she is too.  This is an awesome resource.  Harlee and I met at pregnancy YOGA, and today we took our little girls to the park.  It's really nice to have someone to share all these life experiences with.  And now she can help me document them!  I am definitely going to hire her to create something special for my family about my Mom, Peggy.   Remember Me Always Video

Deja Vu for Illustration Friday

Illustration Friday is a creative website with a word sent out via the internet for artists to illustrate.  This week it is Deja Vu.  Well, with alzheimer's every moment has a sense of deja vu...

Treats

tangerines from my tree!

The treats aren't always candy.  After a long day in the car I gave Peggy an apple.  A real hard apple, not cut up or baked in a pie but one that you could sink your teeth into. A crunchy delicious one.  You know the kind, you can hear it.  She couldn't stop talking about how good it was.

Once I brought tangerines. That wonderful smell when you start to peel it!  Food it's familiar, it's comforting, it's sensory, it's totally in the moment, just like her.

I gave her a lollipop, my new treat of choice, just like when I used them as my secret weapon with my girls when they were toddlers, when I had just one more errand that I needed to accomplish.  She's from Connecticut and I thought she would love looking at the lobsters and the beautiful displays at Fish King.
Peggy talks a lot to herself and asks everybody what their name is and where they live.    I wheeled her up to a table so I could order and she had her grape lollipop and didn't talk quite so much. :)   Then of course we ate our New England clam chowder, and it was really really creamy and good with real clams!

So dont' get me wrong, we love healthy fresh food but candy is nice too, especially when it is an amazing bar of chocolate like what our friends Bill and Nicole sent us for the holidays from Vosage in peppermint and marzipan.  Hey, it's filled with anti-oxidants right?  And research says that's good for the both of us.

 Here is a great article from the New York Times. Very helpful as I contemplate raising the dose of depacote for my Mom. I always bring treats, for her, for me, for the girls and the caregivers. Makes us all feel better sometimes. The more research outside of the box the better, or in this case inside the box of chocolates.

Giving Alzheimer's Patients Their Way, Even Chocolate

Turmeric Health Benefits: Have a Happy New Year With Turmeric

Golden drink is delicious. 1T tumeric, 1T agave syrup stir, add steamed almond milk top with cinnamon, although now I might also add a sprinkling of black pepper.
Read the Article at HuffingtonPost

"Don't take a picture of my ass and put it on the internet"

WHO the heck said that?? I'm not sure which is more shocking, that she said ass or internet.  How does she even know the word internet?  I've never heard her say ass in my life.  This is how these visits go, it's the pleasant with the unpleasant.  I went by myself to make christmas cards with her like we did last year, like she always used to do. She was happy to see me, I put on a christmas cd, turned all the lights on in her room, lit up the tree, gave her a snowman, put on her christmas scarf . We ate english toffee and drank  peppermint tea.  She signed her name!  We sang along to songs, and giggled, and said nonsense words and every once in a while she would say "your Lois".  And I would say "your Peggy, write it down".  We were in our own zone.  Then Nushik, whom I love by the way, helped her go to the bathroom.  She is so good with her.  Pulling down my mother's pants is a sure fire way to get a big shiner just in time for Christmas.  That's when she yells all that crazy stuff about asses and the internet.  Those moments are scary.  The reality is, they have to do this for her many  times a day, every day and night! They have to handle her and manage her, and change her clothes and do all the stuff she doesn't want them to do.

I come and bring her candy, of course she's nice to me. 

Then as I'm leaving Claudia stops me, and asks me how I could get Peggy to participate in things.  What does she like? And things like that. She wants to help her, engage her, make her happy, but she is being anti-social.  She doesn't want to do anything.  She's totally in her own world.  Peggy was never like that.  I remember her telling me that she couldn't wait to live with people and do all the activities and parties.  And she did. In Wheaton she was at independent living, and always was the first to sign up for trips to the city, plays and social events.  Even in Assisted Living, she was still pretty active, taking the bus for rides places and doing the excercise classes...now she doesn't want any part of it. It's so sad, because it's not just the loss of memory.  It's the loss of herself.


So Merry Christmas to all my wonderful caregivers, you are true angels in the very forefront of this battle against Alzheimer's and trying against so many obstacles to keep Peggy healthy and happy.

Merry Christmas Mom

Lois

Paul

Merry Christmas Mom.  We love you!

and David

Thankful.

I am really thankful for these gals.  They are always there for my mom, and smile and give me a hug when I come.

And all these folks spent their Thanksgiving with MY family. Great singing and entertainment by CHADWICK

Thanks guys!!

Not Alone...

So that's the truth.  I'm not alone. The walk, the people, the blogs, the posts, the websites, the information, the conversations, all help me cope.  But honestly, as much as it gives me comfort, it makes me more sad... sad that there are so many people's live enwrapped in this disease.

We did it!

Great Day for a memory walk!  Thank you for all your support.  It was overwhelming to see all the people walking for their family members.  I got a little emotional, knowing all these people have been in the same place as me.  Click here for more alzheimer's walk photos

 p.s. we raised over $2450!!!!!!!!

Sharing Stories

I forgot to mention Sharing Stories Day in Sunny's second grade classroom.  The kids were learning about story last month, and parents were invited to come in and share a story of any kind.  So, I came in and Sunny and I read "What's Your Name Again?"

She read the Sunny parts, and I read the Mom parts.  It was a really wonderful experience.  I was so happy and proud of Sunny.  The kids were really interested, and they loved the Sunny character and asked all kinds of questions afterwards.  Sunny stood up and told them all about her Nana and Alzheimer's Disease.  It was pretty cool.  Then they started talking about their grandparents!  This is my audience, I know this, I believe this.  I know this is a story that must be shared.  It's about showing kindness when you are frustrated, it's not just our story, its a universal story that all the little second graders who had never even heard of alzhiemer's disease could relate to.  Now, if I could just get a publisher to see that too.

Depakote

alzheimer's disease and behavioral symptoms

Here is a link from the Alzheimer's Association that talks about what's happening to Peggy.  It gives me relief to find that it is the disease not her.  I know it is, but it gets so god damn personal sometimes.

Thank you to everyone who has supported us for the walk. The response is overwhelming. Your money goes to things like the website where I am able to research her behavioral problems and drugs.  I have gone from really feeling alone and sad to being uplifted by my friends, family, the doctor, the gals at Sunrise and a little depakote.

"BUT I DON'T EVEN KNOW WHO YOU ARE!"

That's what she said to me yesterday when I was in the bathroom trying to help her get cleaned up.  It hit me like a smack in the face.  But it didn't hurt.  I was to pre-occupied trying to help her and to not physically get smacked in the face.  Last night, around 2am when I couldn't sleep, that's when it hurt.

from July sketch book

Alzheimer's Walk

We are asking our friends to help us out by donating 5 dollars for our walk to fight alzheimer's. Your hand in helping me fight this disease on all fronts is what we need to stay strong and not give up hope. Alzheimer's disease can be a forgotten memory in our future. Please read my blog, and reach in with your hand and support this incredible organization.

Please visit my donor page to pledge.
Alzhiemer's Walk Donation page

Refusing Care

So, I made it over there...she's not good.  I mean she's bad.  Nushka was trying to help her use the bathroom and clean her.  I jumped in, she was glad to see me.  Nushka, not Peggy.  We tried everything.  She hollered at us, smiled at us, lunged at us, swore at us and well when it comes down to it she plain refused us.  What do you do?  We can't make her take off her pants, and she won't let us help her. She will hit us, and has such a panic in her face and voice that force is not the answer.  I called the Doctor.  More Depacote faxed over immediately.  I'm going to take her to see the doctor tomorrow.

Scary

 We saw her on Saturday for the Halloween carnival, Gidgey and I dressed as puppies, because Sunrise hosted a dog costume parade.  Peggy, we dressed her as a devil.  Red lipstick, red horns, and a red blouse as a cape. We had fun. Then Monday I got another call....more erratic aggressive behavior, she actually broke a helper's glasses.   I hate that I have to mix together everything that is happening in one post.  The fun we had at Sunrise, how she loved the hotdog and our costumes, seeing SUNRISE LIVING on the caller id, the feeling of wanting to rush over there....and not wanting to go at all.

better...

Peggy seems better, it's a dance, knowing how to give her independence as she becomes more and more dependent on other people.   The girls are doing the exact opposite.  While Peggy is going backwards,  the little girls are going forwards.  They challenge their dependency on me as a way of  becoming very independent.  Me, I'm pretty much stuck smack dab in the middle, not going in any direction at all.

Perspective at the Norton Simon Art Museum

I saw them, a group of wandering people.  Some clinging on to each other, some wandering off.  One younger woman pushing a chair trying to keep them all together.  They were a group of Alzheimer's patients.  I saw them from a distance, I knew them, they were strangers, but I knew them as well as I know my mother.

I felt very sad.  I felt that I wish I could be there pushing her around to see all the paintings.  Instead I was looking at the paintings with my class, pondering line and color and value, and why a painting "works." A break from my life as a mother and daughter,  I couldn't concentrate.  I kept watching them.  Oh my god, that's my mom.  She used to take me to the Art Institute of Chicago, we used to go together, we'd take the train, she always wore a raincoat, and every painting in that museum has influenced my life as an artist, as did she.

So I bought her a calendar of Mary Cassat, one of her favorite painters, and a book on Jawlensky, one of my favorite painters as seen above. I'll just bring the museum to her, although I'd much rather take the train.

Hitting, Swearing and aggressive behavior

Peggy?  Yep, that's what the nurse said when she called on Friday.  I thought we figured this out, balanced the meds, she was accepting help, and it was all okay.  When someone you love has Alzheimer's Disease, these turns and shifts in the brain and body and how it functions are always alarming.  What does this "new" development mean?  Is it another stage?  How do we fix this?  Unfortunately the reality is that, yes, it's another stage, but not necessarily a progressive one it's just another plaque stuck in the web of the brain.  It's another barrier to communication with your loved one.

 I saw the confusion on her face today.  I saw her in this sea of time with no mooring, I reached out to her and she swiped at me.  She swore, then said she was sorry, I scolded her, I told her I love her and I apologized to Harriet after she hit and threw a dirty towelette at her face.... I saw her, and I couldn't get her.