She smiled at me today

Peggy smiled at me today.  She seems calmer more relaxed.  She talked to me, wanted to know where I live and that she is from downtown Wheaton.  Eyes closed most of the time, but she's settling in.
At dinner every night we go around the table and ask best and worst parts of the day to everyone.
Peggy smiling was definitely my best, cutting her toenails...worst.

Hi Mom.

Sharing a Moment

One pretty amazing moment happened the night Peggy moved into her new home.  It was bed time, I came late so I could help get her changed and in bed and relaxed.  I wheeled her into her room.  Turned the lights on low, and we looked around her room.  I set it up exactly the same as her room at Sunrise.  Same framed pictures...I showed her this one.

She pointed at it, mumbled something,  and then said it makes me want to cry...and she cried.  I hugged her, a real hug. It wasn't a reassuring, or... it's going to be okay, or calm down hug it was a real heart felt reaction hug which made me cry, for us.

I felt like we were actually both there in that very moment, together instead of by myself.

So I stayed a little longer.   I didn't rush back.  I helped her get dressed with the new people, she didn't like it, although she was a little more calm.  I helped them get her into bed, and changed.  She hated that, she looked at me with fear, and the dementia was back, and she was scared and upset.  I held her hand. I turned the lights down low...and read to her A.A. Milne.  Every time I stopped and thought she was asleep she would say  "I like that one."

I know I can't take care of her.  I know I can't be there all the time to hold her hand.  I have to let the other's help.  I just...

The Doc reminded me today, there is no drug for alzhiemer's.  She's right, there isn't.  

A very difficult week

I haven't posted.  Waiting for the move to work itself out.  Still waiting, hoping she will adjust.  Change of places, people and meds.  It's been extremely stressful for me, imagine what it's like for her.  I am an advocate for Alzhiemer's and that means I must document and tell Peggy's story, even if I make mistakes in her care...it's trial and error right now, and that is a very heavy burden.  But, it might help understand how this disease progresses, and find the best ways to care for alzheimer's patients.

So...here's how it went.
Tuesday....movers on time, packed up the room, set it up at the new place, getting ready for her arrival.  Sunrise was extremely helpful and Eva did her hair and Sandy and the other girls watched over her while I was gone all day.  Jacki took G to ballet class and I went and got Peggy.  Okay, here we are now.  Seems okay, are you okay Mom? I love you.
Wednesday...not okay.  Aggresive, hit the dog, upset the dining room table, I mean like "watch my Magic trick" upset.  Mean, swearing, hitting, fearful, anxious, depressed and.... I went right over there.  Helped her get changed, she sees me and she smiles, relaxes, but her leg is shaking (holding back her agitation).  They have to change her on the bed.  This is upsetting to me.  I hold her hand.  I look in her eyes.  This is what I see.

Thursday- Meet with the psychiatrist.  Wants to meet her alone, so I wait in the other room.  She's different when around me.  I'm happy to have someone see her in her environment.  Every time I have taken her to a doctor...she's different, she's with me.  We always get ice cream.

So, the meds are changed....more depacote (we've been through this before) and exchange of Rispedol for seroquil.  Also, completely discontinue her Namenda, as we had planned with Dr. Stern.  Okay, small adjustments...we will work on decreasing her anxiety and depression.  She's been on Paxil for years.  Probably too long.  Research, research, someone please help me with this.  Don't read the internet, there are so many conflicting posts and ideas.  I wish USC would call me back.  

Now here is the stress for me.  I am trying to figure the new place out.  They are trying to figure me out.  We are all trying to figure Peggy out.  I think we all have the best interest at heart.  BUT, it's scary.  So many questions and anxieties about the right treatment.  About Peggy's care.  

Friday- phone call, she's relaxed doing a little better....don't worry.

Saturday- I've got a cold, and figure it's best to stay away.  Allen and Sunny are away at Father/daughter camp, and it's just me and Gidget.  So I spend time with her all weekend.  

Saturday- my cold turns into ANOTHER rip roaring sinus infection.

Sunday-  It rains like hell and my family is back.  I stay inside with them, and hope for the best for Peggy. I sleep.

Monday- I go over there.  She is out of it!  Like eyes half mast, like in bed, totally out of it.  I'm worried. I'm very worried.  I stay with her, she mumbles.  She is in bed, she's relaxed?  The lines on her forehead are smooth.  I'm actually glad she's in bed taking a well-deserved nap in her bed, instead of constantly being propped up in that damn wheel chair.  BUT.....is she too out of it?

Tuesday-  Make a phone call....to USC to discuss drugs.  No call back. (still waiting)  I call the gal at the new home, who always calls me back and talks, we talk realistically.  No veils.  It's going to take a while to adjust.  Don't worry,  I'm worried.  I'm worried.  I'm so fucking worried.

Wednesday- I go over there.  She's in a recliner chair, nicely dressed and sleeping.  In the chair.  That's good, that means she's a little cooperative. She doesn't want to open her eyes.  She mumbles a little.  I stay with her all afternoon.  I help get her to dinner.  She doesn't want to feed herself.  She's out of it, she's depressed.  I keep reaching out to her.  They are changing the Depacote to the evening.  They agree she is too out of it.  We watch her, we monitor, we talk to her.  Is she checking out by choice? A little...I think so.  I know her.  I talk at dinner with the other ladies.  I include Peggy, I whisper in her ear that she'll like it here.  The food is good.  It is!  I'll visit her every day.  It's okay.  Trust me.

She wakes up a little for ice cream...I have to go.  Tomorrow will be better.  Please make tomorrow better.  I get home late, I missed my writing group.  I sleep.  I sleep a lot lately, in my clothes.  It's a burden, the care of someone you love.  And I don't mean the constant care or attention.  I mean the constant stress of wondering if you are doing the best thing for her.  With alzhiemer's it's constantly changing, and there are no experts.  There are no right answers.  It's trial and error.  And you have to believe, research, trust, and hope and wait and worry and make changes if you really care and want the best for someone with this disease, and believe me, I do.

Cha Cha Cha Changes

My favorite David Bowie song.  I think I will hum it all this week.  Peggy is moving.  We've decided a smaller "board and care" place would be better for her.  It's a home, with 6 residents and 2 caregivers and still close by us.  I've been contemplating this since January when USC suggested this type of place for her.  After researching, and looking at many places (Thanks Barb!) I've decided on one I think will best suit my MOM.  Most of the places were very nice and affordable, yet when it came down to my final decision...I let Gidget choose.  I'm not kidding.  The last place, she just settled in, took off her socks and shoes and wanted to hang out.  I felt this way too.  Because that's what Peggy responds to as well, feelings, emotions, smiles, comfort and beauty.  I also really like the 5 ladies that were living there.  They seemed similar to my Mom, like hoping your college student gets a "decent" roommate.  I've been up since 3 worrying about it.  But I've got my team.  Jacki, Allen, the girls at Sunrise, Dr. Stern.  I'll leave it at that for now....til Tuesday, when the movers come.  10:30 am.
I really haven't posted this process, because I feel kinda bad about leaving Sunrise, and also not going with some of the nice places and people I talked to.  I'm so sensitive to the whole thing.  The care, the care, having someone else care for her and me being the manager.   The girls at Sunrise want to know why we are leaving, but understand what is best for my family.  They say they'll miss us.  I'll miss it too.  Honestly.  Alla said "why are you leaving, she is like family to us, we love her."  AND she is used to them, sort of...well she did call us all bitches when we tried to move her from the couch back to her wheelchair.  BUT look at her!  She can't sit up on a couch anymore. Why???  Ugh, all these random thoughts all night.  Should I even bring the couch?

Here is a video of us....wish me luck.

David, Faganel Builders

Builders putting their energy into efficient homes - chicagotribune.com

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