Milestones

I haven't posted in a long time, but we are still here, still celebrating life with Peggy.  It was her birthday August 30th and I painted this picture after spending time with her that day.  I was feeling sad and kinda lonely for the both of us, because I knew I was the only one in the room that knew it was her birthday.









Alzheimer's takes milestones and turns them into a big jumbled pile of rocks.


To my surprise I came home, took all those rocks and put them in order and made this painting.  It has 84 candles celebrating each and every wonderful year Peggy has been around.  It makes me happy, not sad to look at it.

So happy, that I even got it framed and hung it in her room.

Happy Birthday Peggy, we love you!

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. 

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.
  

This is how my day started out

Although Gidgey had a sudden cough come on in the night, she seemed alright in the morning... Allen took Sunny to school, and me and Gidge stayed home from school.  We played on the computer, painted and then I thought, I'll return a library book and pick up Nana's glasses in Encino. Then she'll fall asleep on the way home.....

Well, she coughed so hard on the way home she threw up all over the car.  Gidgey doesn't like to throw up, so she puts her hands up to her face and waves it all around in hysteric's so that it gets EVERYWHERE!

Okay, poor baby...take off her clothes outside, give her a bath, wash the clothes, Allen came home for lunch, so I was able to go outside and hose out the carseat before it caked on.  The day just went on and on  like that and into the night and this morning... I feel crabby... it's not easy being a "caregiver".

But, I can cross one thing off my list.  I picked up the glasses.