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??

I just saw it on CNN.com: When Alzheimer's turns violent

Powered by    * Please note, the sender's email address has not been verified.       You have received the following link from loisandbee@yahoo.com:             Click the following to access the sent link:       When Alzheimer's turns violent - CNN.com*                 Get your EMAIL THIS Browser Button and use it to email content from any Web site. Click here for more information.   *This article can also be accessed if you copy and paste the entire address below into your web browser. http://www.cnn.com/2011/HEALTH/03/30/alzheimers.violence.caregiving/index.html

When I close my eyes

I re-play everything.  I think about Peggy.  It goes around and around, what happened today, yesterday, last week, last year...  I'm okay, really I'm okay.  I'm better this week anyway, I've let some of the pressure off of me.  Talking, being here on this blog, with friends, my family, my new caregivers, old caregivers, the Doctors, and holding her hand.  I'm able to reach out when I need support.  It's just when I close my eyes at night I can't get away from it.

This week was really about me being patient.  Changes are really hard for Alzheimer's patients and their families.   A lot of trust must go into care giving.

This is Linda's theory.  Peggy has come out of her psychotic state, and is now very depressed.  Because  she is now more aware of herself.  Her age, her disease and where she is.   I know she is depressed.  She has been diagnosed with depression for many years.  More than 12, and that's 12 years of PAXIL, which apparently stops working after 4 or 5.  Why is she still on it?  I don't know.  Honestly, I don't.  I've questioned it to all her doctors every time, and it has never changed.  (Another middle of the night swirl in my head)  So, after the risperdal and depakote adjustments get tweaked to hopefully the best levels for her, we are going to change paxil for another anti-depressant.  Why? Honestly...I said to Linda,  "What's wrong with delusional?"  At least she's happy when she's 16 and talking crazy to herself.
"Because she's violent." Linda says.

Sunny said she was embarrassed by Nana, she didn't want her to be the mean one.  Her outbursts are embarrassing and difficult and you really see the pain and fear Peggy has inside.  So, I continue to do what I think is best for Peggy, and my family.  I listen to all the opinions.  I ask questions.  I am patient.  I wait to see, how the meds responds and how she responds.  I watch her, I watch how the care givers are with her.

I stop by often.  She's pretty out of it still.  She's wakes up when I'm there.  When I'm there she responds.   She smiles, she'll eat a little something.. when I'm there, when I'm there, I can't always be there.
Gidget and I bring her daffodils, no response. Gidgey hangs on her and says "wakey wakey, sugar bakey"  Nothing!  That's hard core.

The daffodils fade, I bring tulips.

I take her outside for a walk.  She mumbles to me, she looks me in the face, like she wants to say something.  It's like someones last words, or a long held secret....or a...nothing.

Thursday, I meet with the Psychiatrist.  I am relieved to see that he thinks she is too lethargic, and changes her dose of risperdal right away.  I'm really happy he takes the time to explain to me why we switched from seroquil anyway.  (because of her behavior, she needed more of an anti-psychotic, he would of had to prescribe more seroquel, which means more side effects.)  I'm surprised, it's not the depakote.  He's coming back next Thursday, I do feel that everyone is on the case.  I hang out, I go get us green tea frappacinno drinks.  Hers with whip cream.

You know what works the best, to relieve my anxiety about Peggy.  Just being with her.  I know that sounds weird, and contradictory.  But honestly, it's easier just being with her, holding her hand.  That way I  know where she is, even with my eyes closed.
  

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