"I'll love you forever."

We had a great visit with Peggy Lu.  It makes it easier to go over to the house with someone, because when we sit and chat together, Peggy gets into the conversation, she mumbles, and stutters, and shouts, and smiles, and drinks her tea and participates, in her own way.  Instead of me just staring at her asking questions, wanting answers.  So, I guess my advice for today is to include your alzhiemer's patient in as much as you can.  Don't expect a lot, but you might get a surprise like a bite, or maybe even a coherent whisper like  "I'll love you forever."  That's what Peggy said, when Peggy Lu said goodbye to her last night.

A wonderful visit

Peggy Lu, my dear cousin and Peggy's niece is here from New Hampshire.  I have been preparing her for the visit on the phone and through this blog.   She was nervous.  I was nervous.  My family has trusted me to the care of Peggy.  Ultimately I am making all decisions for her right now and that has been stressful for me because it has been a very difficult move, which was expected...but if you've read the posts before, I wasn't prepared for HOW difficult.  I guess the lesson here is, you can't really be prepared for any of this, you just deal with the hand you get, every day.  
So, what I'm trying to say is this.  We had a wonderful visit yesterday!!!!!  Peggy Lu loved Peggy's new home and her room, and the people there.  This made me feel good. To have someone else say, "yes you have made the right decision" that cares as much about Peggy as I do, gave me such a sense of relief.  But, this post is not just about me...

Peggy Lu walked in and there was Peggy in her chair, and she looked and looked and smiled and got excited and reached out and she didn't know Peggy Lu's name, but she KNEW that it was someone she loved, one of her people, her family.  She held her hand and said "it makes me want to cry".   OH!  We were so happy.  Honestly this is the best Peggy has been since she moved in.  It was unbelievable.  Peggy Lu came at just the right time, and hopefully Peggy will continue to adjust to her meds and environment.  Or maybe, today we just had all the right combination of care, love, medication and family to make a really great day.  I'll take it!     

Stages

So I kinda feel uneasy about posting the video of Peggy.  I don't want to scare anyone that might be headed down this path.  Just this month, two of my dear friends in my neighborhood have had an alzheimer's diagnosis in their family.  One thing I heard on the Larry King Show that hit home was that the founder of  the Lou Ruvo Center for Brain Health  decided not have any waiting rooms in his facility.  BECAUSE when his Dad was going for testing, he was in a waiting room with patients in different stages of the disease.  His Dad saw his future, and well...that's why his son, now has no waiting rooms.

I remember looking at Sunrise here 2 years before I decided to bring Peggy out to the "reminiscence center for the memory impaired" That first time I went up there, I was frightened and knew right away, she was not there, yet.

So here we are today, 4 years later from that first visit.  6 years from moving her to Assisted Living, 8 years from Independent Living and her first diagnosis.  The other thing is that not every patient is the same.  Besides there a lots of stages to this thing.

The stages are fundamentally different,  but you don't know that until you get there.  It is all bearable.  It is the unknowing that I have always struggled with.  I always wanted to know how this exactly was going to play out.  The truth is, you don't know until you get there.  It's like you are in the present that has an empty past and no hope for a future.  That sounds so dramatic and awful.  So, I have taken the stages in years, and months, weeks, days and now minutes or even moments.

Adjustments

I'm adjusting.  I went to Whole Foods for flowers and coffee.  I tend to go there before I visit Peggy.  A little breathing space before I go see her.  I'll pick out some flowers that I think she might like, something seasonal, something to talk about.  Or I'll get something she might like to eat, something I might like too.  A treat, or fruit, or... Today I couldn't decide.  I kept picking something up and putting it back.  I blankly wandered around with a sadness that even the bakery section couldn't hide.  I felt defeated.  Nothing was going to make her better.  Nothing I could buy or do would make her better, even for a moment, like it used to.

I finally decided on a bag of oatmeal raisin cookies, a large coffee (for me) and some yogurt for later and left.  Drove to the house and went in.  DING DONG the bell always goes off announcing my arrival.   I pull a chair up next to Peggy and sit down.  I told her about the cookies, and she wants one.  She gobbles it all up like the cookie monster.  She loved it.  Oatmeal raisin cookies have always been her favorite.  And you know what?  They still are.

So I settled in and adjusted to our new norm.  I held her hand, she held mine extra tight. She lurched toward me now and then, but I knew when to back off.  I talked about golf, and mentioned old friends and family names.  She nodded, she smiled, she got crumbs everywhere and I did too.

                                                                      cookie monster

Larry King, The Alzheimer's Report

So, this is not easy to watch.  I want to show it, so you can see what Peggy is dealing with.  Why we need more research and funding and attention to this disease.  Because as you can see...Peggy loves us, but can't show it, other than through aggression.

Did anyone see the Alzheimer's report on Larry King?  Here's what I took away from it.
THANK YOU to all the celebrities and families that spoke up.   Larry King seemed to think that the worst  thing about this disease, was the forgetting.  Yes, it's true there are different stages, and forgetting is part of all of it.  But remember this a progressive disease, you go from forgetting a name, to forgetting how to swallow. And now that my family is in the end stages, I see why at the beginning, no one was totally honest, or maybe I couldn't grasp how long and difficult this road is.   Angie Dickinson was awesome, her advice was to visit, hold, touch and love the Alzheimer's patient.  Her sister had an early diagnosis.  And when Larry King asked her what she would say to someone who was just diagnosed, she looked honestly at him, paused and said "Oh, shit."  Brutally honest.

Maria Shriver loved her Dad, and it is unfathomable that a man like that could take such a mental fall.
Judd Apatow and his wife are younger than me, and are reaching out to let everyone know that it is not just an old persons disease.  Because the caregivers, whom are just as effected are the generation before them.  Leeza Gibbons, having been there herself knows this, and her objective is to take care of the caregiver.  As Ron Reagan stated, there's a flip of the coin in this epidemic, either you are going to get it, or take care of someone who does.

Depression and Dementia research in elderly women

Research into depression and dementia

She bit me.

So I had a lovely mother's day with the kids and Allen and my mother-in-law Beverly.  Took the girls to the Studio City Farmer's Market I got beautiful cards and earrings and we went out to eat at Canters Deli for corned beef and pickles.  Yummm.  We stopped at the Melrose Trading Post and Flea market and came back home and ate our bakery treats and coffee.  The kids were playing with Ga Ga (ie:Beverly) and so I decided to go see my Mom by myself.  They don't get to see Beverly very often.  I picked up a lemon meringue pie and some berries to go with it.  Another yummm.

I came in with the pie, and everyone smiled.  PIE!  I bent down to give Peggy a kiss, and she was so excited.  She bit me.  "OUCH! Mom you bit me?"  I said.  "Why did you do that?"  Peggy whispered, "I'm sorry, I'm sorry" and had a manic smile on her face.  I know she didn't mean to.  I know it was a reaction, I know all these things.  But, it still hurt.  It hurt in more ways than one.  "Well", I said to the others.  "Peggy's awake!"  Yes, so Peggy is awake, but she is having these almost tourette's like tiny episodes.  Where she will swear at you and then say I'm sorry, I'm so sorry.  She will say "Shut up" out of nowhere, and her arms and legs will try and hit or kick anyone that is near her.  "I'm sorry, I'm sorry, I didn't mean to do that"  she whispers.  And it's gone and she's there again, in her chair.

We ate the pie on the patio, I took her for a walk around the block.  It was a beautiful day.  She seemed to like it.  She seemed calm.  We hung out in her room and looked at pictures and listened to music she was calm, and as I went through the old box of photos of me and her.  I cried.  I cried because it's hard.  It's hard taking care of her.  Pie and cards and walks and drugs, or no drugs are not helping her.  Or maybe I should say they aren't helping me anymore.

And then I read this poem I found in the box. This is going to go into another subject, and I usually like to keep these posts short, but I guess this is going to be a long one.  I am an adopted child.  My Mom Peggy has always been so supportive of who I am and has always wanted to know where I came from.  She has helped me put my name on lists to find my birth family.  She always wanted to meet my birth mother and so have I.  That's why I have over the past two months began a search to find her. So this is the poem I found in the box. When she reached out her hand for mine, we both cried.

Once there were two women who never knew each other.

One you do not remember, the other you call Mother.

Two different lives shaped to make you one.

One became your guiding star, the other became your sun.

The first one gave you life, and the second taught you to live it.

The first gave you a need for love. The second was there to give it.

One gave you a nationality. The other gave you a name.

One gave you a talent. The other gave you aim.

One gave you emotions. The other calmed your fears.

One saw your first sweet smile. The other dried your tears.

One sought for you a home that she could not provide.

The other prayed for a child and her hope was not denied.

And now you ask me, through your tears,

the age-old question unanswered through the years.

Heredity or environment, which are you a product of?

Neither, my darling. Neither. Just two different kinds of Love.

nature vs. nurture self-portrait that I did and hangs in Peggy's room.

Much better!

Peggy is much better today!  OMG.  Can you imagine having a toothache and not being able to tell anyone, even yourself?  So the drugs are leaving her system and she was awake and I brought the flowers Paul sent and we played with make-up and she loved everything.  I am smiling.

Let's go see

Let's go see if Nana is awake.  Gidget gave me the thumbs up!  She's not...thumbs down. Peggy is not on any drugs at all now and getting her blood checked.  She's drooling up a rainstorm, and I thought it could be her gums.  So we took her to the dentist today.  Everyone was so helpful and understanding, even Peggy.  They cleaned up her mouth and hopefully we'll be able to stay on top of her dental care. It's tough when she won't let you help her.  Prescription anti-bacterial mouthwash should help, as she was able to follow directions to swish and spit.  She has so much drool, she is just gagging.  I thought maybe she was forgetting to swallow.  Linda doesn't think so, because she is eating fine.  Forgetting to swallow is one of the very last stages.
I'm feeling she and I are in a downward spiral.  I keep going over there at different times of day, even night to see her, and I can't find her there.  She's lost in this internal place. She knows it's me, I hold her hand and she grabs mine tight as the rest of her mind spirals down away from me. I want to be able to let her go, so she can catch up with her mind and just rest.  But that's not the way this disease works, it's a very slow drain that is hard to fix.