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??

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.