peggy days

"Love Makes a Family" -- Happy Holidays from MoveOn.org

2011-12-23T08:09:00.000-08:00

Returning to Infancy

2011-12-14T06:25:00.000-08:00

Gidget and I took Peggy for her annual exam at USC research center. The Doctor comes in and I'm the only one that says hello. Peggy is in her chair, mouth open, holding on to her blanket. Gidget is playing games on my android and I have to make her say hello and then start to worry about how her brain is developing with this modern device.
They said she doesn't need to come back next year, it will be easier to just talk over the phone. In other words, Peggy can't take any kind of mental test. Although she did check her vitals and take a look at her reflexes. It was very interesting and actually quite disturbing because I have known her mind was taking her backwards, but her body now is too. I watched the Doc touch my Mom's face and Peggy's mouth opened and head turned searching for milk like an infant. My Mom hold's her hands tightly in a clutch, like a baby does. I remember trying to smooth out my own children's precious little hands, and watch Allen's huge smile when he thought the baby was grabbing his finger.

Now, it's an old ladies hand, that clutches and searches and it's not precious. Peggy responds to sounds, to cooing, and singing, you have to be right in front of her to catch her attention. Just like the strange little creatures we all bring home from the hospital to our homes. And so this journey continues, backwards. But today gave me a little more understanding, to see that all she really just needs is shelter, food and love, just like an infant.
Oh, and some anti-psychotic drugs so she won't hurt people.

Smells like home.

2011-11-27T03:57:00.000-08:00

I hope everyone had a lovely Thanksgiving. We did. My brother David came out with is kids and we've been goofing around all weekend. Peggy's place had a nice Thanksgiving with lots of people and cooking. It smelled like home. All the residents responded with smiles and good moods. Even if they weren't totally aware what was going on, they knew something comforting was.

Later after they helped us get Peggy in the car, David and I wrangled her out of it. Let's just say it was not elegant. Getting her back in the car was worse. You see, Peggy hates being moved or touched and trying to get her from the wheel chair to the car is scary for her. What she doesn't know is that it is scarier for us. As she screams and hollers and resists we have to believe that we are not actually hurting her and continue with the back breaking twists, turns and lifts to squeeze her into the rented sedan. Then she's in, we click her seatbelt and everything is okay again. Whew!

But, as you can see. It was worth it, here she is at my house at our table with everyone at Thanksgiving.

Proud Mom

2011-11-17T20:16:00.001-08:00

We decided to take Peggy for a walk. I had forgotten something and was running behind to catch up. This is what I saw. Peggy Lu taking time off from her busy life to visit, Gidget being stubborn and insisting on pushing the wheelchair and Sunny growing up by her Nana's side. My lovely little family helping my lovely Mom. Makes me proud.

A Wonderful Life

2011-11-10T06:56:00.001-08:00

We all met at Nat's Early Bite for breakfast. Then over to Peggy' home. The girls ran in, knowing the routine. I was hesitant. Th guys politely stepped in. We open the door and the bell goes off, the dogs bark and my mom is there in a chair. I go up to her and hug her, she responds. Everyone says "hello". We move into her room so I can show them some pictures of me and my family. I look at one and say "she was so pretty" Danny says "she still is." I'm looking through the box of photos, I hear Danny whisper to my Mom. "Thank you for taking good care of Lois"

Wow! I take these pictures, am overwhelmed with emotion, the girls bound in and we are all laughing again. It was one of the most beautiful moments of my life. Other than my kids being born. That we all had that small opportunity to appreciate life and love and show gratitude, is what being alive is.

Thank you everyone for letting me share this story with you. I know you all have your own stories, and appreciate you listening to mine.

The visit

2011-11-09T07:03:00.000-08:00

The Fountain Family siblings

Me and my brothers

So, I hung up the phone. Smiled for a week. Liam came over to visit that Saturday and Danny and his best buddy were to arrive at the beginning of November. The family shot over a few e-mails, I responded, we sent pictures of our families. I saw pictures of them as little kids, and then as adults. We all friended on facebook. I called my Dad, my brothers, my friends, my cousins. It was exciting and weird. I saw a picture of Patty, my birth mother. They all see a resemblance but I don't. I'm not sure. I see a girl that I wish didn't have to go away to Green Bay to give up a baby. I also see a girl that had a family that loved her. Honestly I didn't feel any more or less connected to her after seeing the photos. I'll tell you why, because she has a very special place in my heart, it's a feeling, not an image or a memory. I always wanted to let her know that I was okay. That I wasn't a secret or something to be ashamed of. That I love her.

Liam and I called back and forth, he's the only creative one in his family too. We seemed to hit it off really well and so easily. We messaged back and forth, where should we take these Chicago guys in LA? Definitely not Italian food, Jimmy's Italian (Danny's life long friend) and he definitely will hate the italian food here, as we do. I know they are probably not picky, but we didn't think sushi would be quite right either. So we settled on The Great Greek! They even get the Pita bread delivered from Chicago. So, after work I showered and my cousin Eric and mother' in law Beverly took care of the kids and Allen and I drove up Ventura Boulevard to the restaurant. There at the table was Danny, Jimmy and Liam waiting for me. We hugged, smiled and he gave me roses. Lots of roses! He was so nervous and grateful and happy. I was nervous, happy and curious. I asked if I looked like her, he said yes, but she was smaller! I'm what most people would call "petite" so that was pretty funny. We sat down, Allen and I held hands. He told them that they didn't just find anybody, that I was special. We've been married 13 years, together 18...we don't really say stuff like that anymore. I smiled some more. I kept looking at my roses. We talked, and ate. They have live music at the Great Greek and dancing. Liam and I danced. Patty used to like to dance. It was really wonderful. After dinner, I said "this must be really weird for you", Danny said "yes" I said, "do you feel like your looking at a ghost?" He said yes. We paused. He loved his sister, and here I was, he wanted me to know that. He also didn't want to say the wrong thing. He wanted to hear about my family and tell me how grateful he was to them. We said goodbye, they will come to the house on Saturday and meet and hang out with the kids. I have life drawing on Friday's, so I was busy. Then I cancelled life drawing and they came over on Friday. What the hell would I be doing at a studio drawing from life, when life was right in front of me in my own home.

Me and Danny Fountain

Jimmy, Liam and Danny

So they came over on Friday and we hung out all day, they brought the kids a Wii game and we all played bowling, and got to know each other a little more each visit, each day. People came over to say hello. Beverly was there and Eric. Saturday Allen made tons of food and I bought coke's for them, Barbie and Ray stopped by, and Danny made sure to thank her for helping me make the call.

Then it was Sunday....Danny said he would like to go visit my mom Peggy with me, if that's alright.

Next post, visiting my mom.

How I made the call.

2011-11-08T07:02:00.000-08:00

Wow, so life is beautiful. What else can I say. I know it is not always that way and sometimes a lot of sorrow leads up to these beautiful moments. I'm working now, and only have a little time for everything, so it's going to be told in parts. But hang on it's a good story....

I had been searching for my birth mother for 25 years, not actively that whole time but, every now and again the urge to know what happened, what my story was, would surge and I would search the internet, draw a picture, go through my old manilla folder of paperwork that I have been carrying around with me my whole life and update my information. I'm turning 43 this year and I began to feel more and more that I was going to have less and less of a chance to meet my birth family. I thought, I have ONE life, that's it, and decided to implore my girlfriend Barbie's help. She's a producer, one of my oldest friends, and well let's just say she know how to get things done. I called Catholic Charities to get things started. No one apparently has opened the file since 1968. Darn, so they aren't looking for me...this is what I had feared. Do I want to continue...yes, I do. It's up to me to take the first step. So, I filled out some paper work, donated some $ to the Catholic Church....asked myself the question, how will I feel if they don't want to hear from me. Honestly, will that be worth it? I'm very happy with my life, I love my family and we all get along, I dont' have emotional problems and besides the regular tulmoutuous life of trying to make a living through creative pursuits, I am a generally happy person. Why screw it up?

The nun loses the paperwork, she doesn't call me back, so I have to constantly get up my nerve to pursue this and make more than one phone call. Finally after one more call back, she phones. "I believe your birth mother died" she says. "Oh" I said. That's it. Not much more, she can't tell me much because of the closed records. I only had her name. She asked me if I wanted to pursue her family. Yes, I did. She had 4 sisters and a twin brother, yes, yes I did want them to know that I am interested in contact with them. I contacted the ALMA society, who help with adoption searches, let them know the info I found from Catholic Charities and they were on the case! And that's where it sat for a long time...

"She's Buried in My Garden"

They found Danny Fountain. Patty's twin. They forwarded me the number. Now here is something that was very difficult for me. In my "non-identifying" paperwork, it stated that everyone knew about the pregnancy except for Danny, he was away serving in Vietnam at the time and they didn't want him to know. I kept reading this...why did I have to be the one to tell him. I didn't call.

Barbie and I went to lunch. She dropped me off and I said, "oh yeah, Catholic Charities called again, now they are not sure if my birth mother is really dead." She looks at me and says "Just call the brother!"
She was right, I should just call the brother. So we parked, went into the house and I found the number. I knew exactly where it was, underneath this entire pile of disorganized projects that if you asked me to find something else we would of been there all day. We went into the bedroom and I dialed....the previous post tells the rest of this story.

The next will tell about Danny coming to visit me.

There is no nature vs. nurture, just love.

2011-10-21T07:00:00.000-07:00

Mother's Love

Sunny, Lois, Gidget, Liam and Allen

If you have been reading this blog for a while you may remember my post about being adopted and my search for my birth family....well that day came last week. It's been pretty strange, amazing, exciting, weird, and sad. My birth mother died at a young age, 37 from an aneurism, not but ten miles from where I live now. She came from a big Irish family just outside Chicago. They have all been calling me and I can tell they really loved her and are so excited to meet me. It's almost like I am picking up where she left off, age wise. My first connection was with her twin brother Dan. Peggy had a twin sister that died in her 30's as well. Dan has a son, who came over to our house last week! His name is Liam and he is so cool and sweet and fun and well, kinda looks like me! Okay, so how do I make this post short. Well I guess it took 24 years to find them, it might take a few words to tell the story. My mom helped me fill out some paperwork when I turned 18 that would put my name on a list, and if the birth family was on the list too...you've got a match! There never was a match, and I continued to look, sort of, throughout my young adult life. I was curious. I also wanted to let my birth mother know that everything had turned out alright. That I was happy, I had a neat family that loved me, and well that I wasn't "an accident". Long story short. That same society ALMA and Catholic Charities gave me the clues I finally needed to make the call to Dan. I asked if he was Dan Fountain, and if he had a twin sister named Patricia Fountain, and that I believed she was my birth mother. He said, "your the baby" and proceeded to tell me the rest of the story....

Me talking to Dan for the very first time.

The first person I wanted to tell was my Mom, Peggy. So I took her for a drive and I did. And she smiled and listened and I talked. My Mom has always been there for me, and she still is. I love my family so much for giving me love and freedom and making me feel special because I was adopted.

WOW!

2011-10-21T06:15:00.000-07:00

We raised $4950 for the Walk to End Alzheimer's!!!!Here are some great photos from the day. I want to really thank everyone for donating. There were so many people at the walk with so many stories and your donations helped every single one of those people and their families.

Ukelele Visit

2011-10-09T06:58:00.000-07:00

Sunny just started playing the ukelele, she carries it around with her wherever she goes. So far this is the only song she knows...and they love it, everytime.

Purple

2011-09-21T08:55:00.000-07:00

The new color of this blog is purple. That is the Alzheimer's color, and today is World Alzhiemer's Awareness Day. I know it seems like every day is filled with articles, news, voices, information, donation requests, but until this is on the world radar the way AIDS and cancer fighting is, we have to shout it out.

A friend of mine's mother was just diagnosed yesterday, many more will be today. We can find a cure before they get to the end stages. I really believe so. If you have been touched by Alzheimer's and aren't afraid to look into the future, you can help us now. Please click on my personal donation page and offer your support. Any amount is welcome and I will walk with pride and encouragement and hope for every family that needs it.

Click here to donate. Thank you.

Sincere Sentiment

2011-09-21T08:36:00.000-07:00

I received this card in the mail, an old-fashioned card, with a note...sending me well wishes and love about me and my Mom. It made me cry, the kindness of it....Sunny my 8year old, came over to me, smiled and gave me a hug. I felt her strength, her kindness, her understanding and her beauty. I guess that's just what daughters do.

I'm grateful that I have spoken out and told our story, and hope I can be there for those that need company too. Caring for or about someone with Alzhiemer's is not something you can do alone.

Glen Campbell: Forget Me Not

2011-09-04T06:39:00.000-07:00

Glen Campbell: Forget Me Not
Listen and read about Glen Campbell's Alzheimer's diagnosis.

Bye, Mom....

2011-09-02T07:35:00.000-07:00

Now when Peggy has appointments, I meet her there. The guys do a great job of getting her in and out of the car. She hates change, especially changing her position. She really gets freaked out. I got there and saw her in the waiting room. She was, obsessive talking and I showed her a sports magazine with lots of golf and tennis, she tried to talk back, but it got kinda embarrassing because she could't find her words and was kinda loud. So I just sat with her. We went in, and the guys got her in the chair, and once she settled she did pretty good. Remember...she's a biter. Adrienne is the best! I totally recommend her, just click on her name if you have someone in your life with special needs that needs a cleaning. So, then it was over and we had to move her again, just when she was getting comfortable. Then she got her little toothbrush and off she went and I said goodbye and the guys rolled her away. I paid the bill, went downstairs to my car, and I saw her in the van and felt sad. She should be with me in this car. This is HER car, I inherited it after she could no longer drive. Seeing her from a distance is uncomfortable, I could see her anxiety through the tinted glass, and then she seemed okay, maybe it was just my anxiety. I have to convince myself she is in good hands, I could not take care of her myself, (for goodness sakes, it take two grown men to move her from one chair to another), I have a family of my own to take care of, she is, she should be with me.....in her car.

Walk to End Alzheimer's™ Recruitment Video

2011-08-31T08:07:00.000-07:00

Remember What's Your Name Again?

2011-08-30T17:07:00.000-07:00

The Children's Book I am still trying to get published, that has had beautiful rejection letters, reave reviews and is still sitting in my drawer? Well, I applied for a grant from the SCBWI and got a "certificate of merit" Which is better than not getting one I suppose.

In honor of Peggy's Birthday

2011-08-30T12:15:00.000-07:00

In honor of my Mom's birthday, I am starting the fundraising for the annual WALK TO END ALZHEIMER'S. Please, if you've read this blog, you know how this disease effects families. We are doing our part, by participating in events, fundraising, and raising awareness. Now it's time to do yours. Visit my donation page and give whatever you can. The Alzheimer's Association does wonderful work for patients right now also and also supports research and raises awareness in hopes to eradicate Alzheimer's disease in the future. Click here to donate.

Happy Birthday!

2011-08-30T11:57:00.000-07:00

Today is Peggy's birthday. We went over and celebrated yesterday with fruit, balloons, music and time. It's hard to understand where or why she is the way she is now, but we try and put that all aside and celebrate. Because if there is one thing little girls know, it's that birthday's are important!

Fruit Bouquet!

Happy Birthday!!!

We named the bears Sunny and Gidget

A fun present of CD's from Betty

spending time...

Family Drugs.

2011-08-14T11:12:00.000-07:00

Family is the best medicine. David and his family came to visit and we had a great time! We took Peggy out on a four hour mountain drive, visited with her everyday, hung around and she was so relaxed and on board with us it was really wonderful.

But back on the subject of drugs....her psychiatrist, has been trying to find the right cocktail for Peggy. Something that eases her agitation and aggression that also keeps her a "functioning" person emotionally and physically. If you've read this blog you've seen the ups and downs and sometimes even sideways state of Peggy. After a few months of continuing on this anti-psychotic track, which all of her doctors thus far have recommended he has decided to try a different path. Keeping her seroquil low and adding anti-anxiety and anti-depressants. This change happened a week ago Thursday. Today is Sunday, and she really seems to be responding well. The furrow on her brow is gone, and she seems more awake and relaxed. I'm not expecting her to go back to where she was a year ago, I am just happy to see her paranoia and irritation smolder a little.

Peggy at the Mt. Wilson Observatory

After David's visit, and our super outing Linda called me to say how encouraged she was about how Peggy was doing. Thanks David and Sharyl, we loved having you here! Ashley's cheer leading had Nana clapping, and Christopher's kindness to her was unforgettable.

National Alzheimer's Project Act

2011-08-14T10:45:00.000-07:00

This is a pretty cool project. Last week I took part in a national live phone conversation. It was like a townhall meeting asking opinions and giving people a chance to say what they would like to see in terms of Alzheimer's care and research in the future. I encourage you to take part, or listen, and voice your opinion. The Alzheimer's Association is asking for input from us, who deal with the disease for our input. CLick here to find out more, and to share your story and ideas.
http://napa.alz.org/share-your-feedback

Quality not Quantity

2011-07-28T07:30:00.000-07:00

Paul and Wendy were able to make it out to see Peggy. They were here for a conference in Newport Beach. Great, they can drive over and see Mom for the afternoon and have lunch with me and the girls. Great idea! No problem, it's only 35 miles away....NOT IN LA!!! They were stuck in traffic, so it took 2 hours to get here, and 3 to get back to be on time for their evening dinner. Which means 20 minutes with Peggy....
But, you know what, it was worth it. I'm so glad they made the effort. What is it that they say quality time, not quantity time. That is really true with Alzheimer's because there is no concept of time anyway. And even though it doesn't seem like she knows what's going on, we have to continue to show her love and that she is part of our family and include her in the conversation even when she can't participate.
So, go visit your elder people, people!

Peggy, David, Lois and Paul

Click here for a link to Paul's company, it's a great story and even better immune boosting product.... Epicor

Ice cream

2011-07-23T08:07:00.000-07:00

Lois- "Mom, What's your favorite flavor? Chocolate or Vanilla?"

Peggy- "Barbecue"

Momofuko Milk Bar

Kohler Art Center exhibition- MEMORY

2011-07-19T06:48:00.000-07:00

I went back to the mid west this week to visit family and friends. We usually only go back for a few days and split our time between Milwaukee and Chicago, and never have enough time to visit everyone we want to see. THIS time, I really wanted to make an effort to see my artist girlfriends, Erica, Rachel and Anne. We used to share studio space and coffee together. I hadn't seen them since I left, and having trouble making art these days, I needed some inspiration from these gals, who are struggling to do the same.

Erica works up at the Kohler art museum in Wisconsin. One morning I had just enough time before I had to catch a train to Chicago to run up there and see her. I burst into the museum to find her waiting for me, her eyes bluer than I remembered. The girls played in the amazing ARTery, an interactive art making space for the public, that she runs. She had a meeting, and encouraged us to check out the exhibit. Which just so happened to be called "HIDING PLACES: MEMORY IN THE ARTS"
Kohler Art Museum please click here for lot more information on the exhibit and center.

So, we went in...there were four categories... Holding Memory, Forget Memory, Shared Memory, and From Memory. We walked right into these hanging tangles of wires, with blinking lights, tiny television slide shows and creepy music. I said to Sunny, I feel like we are inside Nana's brain...turns out, it was a piece on Alzheimer's. We were enthralled with the exhibit. But, for me it was very, very sad, and quite disturbing. Every piece resonated in my heart about where Peggy is. How I have to leave her there all alone with her brain. Sunny was scared and very upset about a particular piece. It was large rooms, with sand and it was dark, and images flew by on the wall. There were set like pieces from life, a dresser with pictures, a bed, large dresses hanging from the ceiling and writing on the wall, snippets of life. The artist' mother had Alzheimer's. So does ours. So many pieces dealing with memory, were sad. There were not many beautiful images, or I dare I say "fond memories"

I was happy to see Anne Bastings was there, and frequently shows up and talks and does workshops. If you read this blog, you'll remember the day I found her book "Forget Memory" which helped me change the way I see Peggy. And David Greenberger, who puts Alzheimer's "musings" to music. These guys are all trying to help communicate and love people without focusing on their memory, or loss of it.

There was an interactive piece, and I encourage you to do it now. Take 10 pieces of paper and write anything that is important to you, or something you like on them. It could be a person, place or thing... I chose family, daughters, dogs, garden, art, friends, home, husband, coffee, reading. (not in any particular order) NOW fold them up so you can't see what they are.
Throw five of them away.......you are in the beginning stages of Alzheimer's
Open them up and see what's left, fold them again and
Throw three of them away.... you are in the middle stages
Open up to see what's left, fold them up and now throw two more away
You have one thing left.....you are in the final stages.
I was left with garden. Nothing else, no daughters, dogs or husband. No art.

Erica Jane Huntzinger, at the Kohler Artery

The exhibit was challenging, moving, creative and thorough. You could spend a weekend there in lovely Kohler Wisconsin on the shores of Lake Michigan and then make art from all the things you learned, and contemplated, imagined and saw for another week. I think you'd come out a more sensitive being. I only had two hours, and that included another hug from my dear friend, with whom I do have lovely and fond memories and will cherish all of them, whether I remember or not someday.

One block away

2011-07-02T08:58:00.000-07:00

I've been working at the pre-school one block away from Peggy's house. Knowing she is right there inspired me to paint this little mural of us reading under a tree. We used to always go on picnics at Cantigny in Wheaton, IL
Anyway, I've been able to stop by quite often and at different times of day and night. Not that time has any meaning there. It's nice to be able to say hello and goodbye more often, even though she always gets mixed up. I say hello and she says goodbye. Hey isn't that another great Beatles song?

Remembering me and Peggy

a lot of help!

Sometimes I have a little help

Having fun at Nana's, sort of.

2011-06-25T07:10:00.000-07:00

We bring Ginger over and they all go crazy and run around.

I'm not sure FUN is the right word, but the dogs and Gidget seems to think so. I don't expect as much from Peggy. She used to paint with us, now she watches, she used to pet the dogs, now she pinches, but Gidget still makes her smile. Although, I have to be careful with them now. Peggy pinched her pretty good the other day, and the look on G's face was kind of heart breaking. It took her quite a while to recover. She thinks Nana is funny. She knows Nana has a disease, but when it's someone you love you don't think they are going to pinch you too.

We bring her into her room, to hang with us...

On the way home we were listening to the Beatles song Hey Jude....at the end when John Lennon sings that crazy nananannanannanna part, we all laughed because it sounded like Nana.

Not just the word, Nana, but actually sounded the way Nana tries to talk to us with her stuttering. The kids, they want to understand her, and love her even when she can't really love back. :(

We paint her pictures

Wise beyond your years

2011-06-12T08:44:00.000-07:00

Peggy seems to be doing okay....She is getting used to the place, and they are getting used to her. I didn't see her for a whole week....and that was okay. I know my Mom wouldn't want me to worry so much. I wouldn't want my girls to have to worry about me in that way. She would want me to be at their recital, and school play and be with Allen and read, and paint and work. All the things she taught me and encouraged me to do as my Mother. She always said to me "You are wise beyond your years." Sometimes she meant that in a good way, and sometimes not. I'm afraid the years have now surpassed the wise part of that statement. She also used to tell me "My eyes were bigger than my stomach" Unfortunately that is no longer true either.

That's Sunny on the far left.

G at Ballet class

Anyway, I do think that it was wise having Peggy Lu visit. She relieved a lot of pressure on me, and I can go back to including Peggy into my routine, instead of making my routine specifically around her.

Scientists Discover New Direction in Alzheimer's Research

2011-06-07T08:00:00.000-07:00

Scientists Discover New Direction in Alzheimer's Research

"I'll love you forever."

2011-05-31T09:23:00.000-07:00

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

2011-05-28T07:26:00.000-07:00

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

2011-05-27T06:55:00.000-07:00

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

2011-05-23T01:43:00.000-07:00

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

2011-05-20T16:32:00.000-07:00

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

2011-05-10T23:24:00.000-07:00

Research into depression and dementia

She bit me.

2011-05-10T06:58:00.000-07:00

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!

2011-05-06T19:33:00.000-07:00

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

2011-05-05T21:32:00.000-07:00

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.

We are not alone

2011-04-27T06:25:00.000-07:00

Alzheimer's Caregiving So Scary

Vacation

2011-04-26T06:55:00.000-07:00

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?

2011-04-19T00:22:00.000-07:00

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!

2011-04-14T21:29:00.000-07:00

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

2011-04-11T21:13:00.000-07:00

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

2011-04-09T21:17:00.000-07:00

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...

2011-04-04T21:03:00.000-07:00

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

2011-04-04T06:51:00.000-07:00

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...

2011-04-03T00:02:00.000-07:00

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

2011-04-02T14:29:00.001-07:00

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When I close my eyes

2011-04-02T07:21:00.000-07:00

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

2011-03-25T22:00:00.000-07:00

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

2011-03-24T01:58:00.000-07:00

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

2011-03-23T07:06:00.000-07:00

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

2011-03-14T06:01:00.000-07:00

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

2011-03-04T07:54:00.000-08:00

Builders putting their energy into efficient homes - chicagotribune.com

Follow Up and Follow Through- Decrease Namenda 1/2

2011-02-21T12:10:00.000-08:00

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.

2011-02-16T16:16:00.000-08:00

"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....

2011-02-15T05:40:00.000-08:00

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

2011-02-09T07:12:00.000-08:00

Lois's Art Blog: Illustration Friday-REVERSE

Blogging

2011-02-04T01:13:00.000-08:00

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?

2011-02-02T08:26:00.000-08:00

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...

2011-01-25T03:39:00.000-08:00

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

2011-01-19T18:58:00.000-08:00

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

2011-01-11T09:39:00.000-08:00

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

2011-01-08T07:07:00.000-08:00

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

2010-12-29T00:47:00.001-08:00

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"

2010-12-24T06:49:00.000-08:00

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

2010-12-16T06:04:00.000-08:00

Lois

Paul

Merry Christmas Mom. We love you!

and David

Thankful.

2010-12-02T08:47:00.000-08:00

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...

2010-11-14T23:29:00.000-08:00

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!

2010-11-07T13:52:00.000-08:00

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

2010-11-07T05:11:00.000-08:00

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

2010-11-05T01:33:00.000-07:00

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!"

2010-11-04T09:47:00.000-07:00

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

2010-11-04T00:16:00.000-07:00

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

Refusing Care

2010-11-03T23:51:00.000-07:00

So, I made it over there...she's not good. I mean she's bad. Nushka was trying to help her use the bathroom and clean her. I jumped in, she was glad to see me. Nushka, not Peggy. We tried everything. She hollered at us, smiled at us, lunged at us, swore at us and well when it comes down to it she plain refused us. What do you do? We can't make her take off her pants, and she won't let us help her. She will hit us, and has such a panic in her face and voice that force is not the answer. I called the Doctor. More Depacote faxed over immediately. I'm going to take her to see the doctor tomorrow.

Scary

2010-11-03T06:28:00.000-07:00

We saw her on Saturday for the Halloween carnival, Gidgey and I dressed as puppies, because Sunrise hosted a dog costume parade. Peggy, we dressed her as a devil. Red lipstick, red horns, and a red blouse as a cape. We had fun. Then Monday I got another call....more erratic aggressive behavior, she actually broke a helper's glasses. I hate that I have to mix together everything that is happening in one post. The fun we had at Sunrise, how she loved the hotdog and our costumes, seeing SUNRISE LIVING on the caller id, the feeling of wanting to rush over there....and not wanting to go at all.

better...

2010-10-22T10:01:00.000-07:00

Peggy seems better, it's a dance, knowing how to give her independence as she becomes more and more dependent on other people. The girls are doing the exact opposite. While Peggy is going backwards, the little girls are going forwards. They challenge their dependency on me as a way of becoming very independent. Me, I'm pretty much stuck smack dab in the middle, not going in any direction at all.

Perspective at the Norton Simon Art Museum

2010-10-19T09:27:00.000-07:00

I saw them, a group of wandering people. Some clinging on to each other, some wandering off. One younger woman pushing a chair trying to keep them all together. They were a group of Alzheimer's patients. I saw them from a distance, I knew them, they were strangers, but I knew them as well as I know my mother.

I felt very sad. I felt that I wish I could be there pushing her around to see all the paintings. Instead I was looking at the paintings with my class, pondering line and color and value, and why a painting "works." A break from my life as a mother and daughter, I couldn't concentrate. I kept watching them. Oh my god, that's my mom. She used to take me to the Art Institute of Chicago, we used to go together, we'd take the train, she always wore a raincoat, and every painting in that museum has influenced my life as an artist, as did she.

So I bought her a calendar of Mary Cassat, one of her favorite painters, and a book on Jawlensky, one of my favorite painters as seen above. I'll just bring the museum to her, although I'd much rather take the train.

Hitting, Swearing and aggressive behavior

2010-10-17T07:09:00.000-07:00

Peggy? Yep, that's what the nurse said when she called on Friday. I thought we figured this out, balanced the meds, she was accepting help, and it was all okay. When someone you love has Alzheimer's Disease, these turns and shifts in the brain and body and how it functions are always alarming. What does this "new" development mean? Is it another stage? How do we fix this? Unfortunately the reality is that, yes, it's another stage, but not necessarily a progressive one it's just another plaque stuck in the web of the brain. It's another barrier to communication with your loved one.

I saw the confusion on her face today. I saw her in this sea of time with no mooring, I reached out to her and she swiped at me. She swore, then said she was sorry, I scolded her, I told her I love her and I apologized to Harriet after she hit and threw a dirty towelette at her face.... I saw her, and I couldn't get her.

2 new residents at Sunrise

2010-10-12T05:52:00.001-07:00

Unraveling

2010-09-21T11:51:00.000-07:00

Peggy used to be a great knitter...I brought over an afghan she had made and put it on her couch, and asked her if she remembers making it. She doesn't. Why do I think memory is so important, or keep asking her stuff like that?
When I told Gidget Nana was waiting in the car at pre-school. She smiles huge and says "Nana!, I love Nana!" She simply just loves her Nana, alzheimer's and all. She inspires me. So now, Peggy knits with Gidget and they make a mess with the yarn. I keep trying to get them to ravel it back up and organize the colors, and they just roll it back out and play with it like kittens.

This is a pastel painting I did, called Alzheimer's disease, in 2003 when my mom was first diagnosed. I used to think it was a portrait of her.....maybe it's me.

See your dentist twice a year, or twice in one week is good too.

2010-09-19T09:24:00.000-07:00

This is where Gidget sat with me at the dentist. This is the place I laid back in the chair, my mouth stuck open, unable to talk where she whispered "I love you."
This is the same place I sat when I took Peggy to the dentist later in the week, she laid back in the chair, her mouth stuck open, unable to talk where I whispered "I love you."

Real Birth Day

2010-09-08T09:03:00.000-07:00

We went over on the 30th to visit Nana for her real birthday. She got lipstick, she still puts it on her hand first to see if the color is good on her skin, just like she used to do at the department store make-up counter.

The Value of Families

2010-08-09T11:39:00.000-07:00

Wow! It's over, everyone left either on the red-eye last night or early this morning. Peggy was included in everything. Lot's of eating and being together and playing and talking and driving. "I'll watch the kids, you guys go get Mom." Everyone was always doing something, and I noticed that Peggy was more alert, more engaged and very happy. She was still in her world, but something was different, she was with us a little more in the present. And that's all we wanted, for all of us to be here in the present together.

My art show's special guest

2010-08-06T21:45:00.000-07:00

I had an art show of my most recent work up at M Street Coffee, just down the street from Sunrise. I knew it would be hard to bring my Mom myself. So I had decided not to, because I knew I would have many other things to worry about or take care of, and I usually do stuff at the last minute....like my hair, and label everything. It is hard to exclude her from important things we do that I want to share with her. But, sometimes I have to think about myself and the girls first. So, anyway the reception coincidentally fell on the same week everyone was here, last night... and Peggy Lu brought a special guest.

The Birthday Party

2010-08-06T21:35:00.000-07:00

The Birthday Party was a big success. We all hung out at the Sportsmen's Lodge pool, and in a Suite we sung happy birthday ate cake and enjoyed ourselves. Peggy had all her people around her, and I could tell that she was very happy. She thinks she's 5 one minute, 23 another, sometimes 12 but never, ever in a million years would she believe that she is 80.

Grandchildren!!

2010-08-06T17:07:00.000-07:00

David and Paul!!

2010-08-06T16:52:00.000-07:00

Well, here they are, the real thing, in the flesh.... DAVID AND PAUL! together. It was really wonderful. She was so happy to see them. It was fun to reconfirm with the staff that this is the DAVID AND PAUL she always talks about.

Lunch with Peggy

2010-08-06T16:49:00.000-07:00

Gidget, Beverly, Peggy, Joan, Lisa, Sunny

Everyone is starting to arrive for Peggy's 80th birthday party and it's wonderful. I am so happy everyone is coming. I also feel sad, for everyone to see her, how she is now. It took me a while but I'm used to and comfortable with how she is now, but then I see her through their eyes, and I feel emotional.

What's Your Name Again?

2010-08-06T16:42:00.000-07:00

This is the book I've been working on for a long long time, my family and my friends and especially my writing group can attest for that. The less words, the more each one counts.

For 4 days I went to the Annual Summer SCBWI (Society of Children's Book Writer's and Illustrators). This was the 3rd summer, I sent "What's Your Name Again?" in for a manuscript review, and....... I got a great review from April Wayland! She thinks it's ready and to quote her thought "we need this book." And my teacher from art center the talented, inspiring and award winning Marla Frazee, left me note..."I love the new dummy" (dummy means mock-up book):)

This book is totally inspired by my girls, their unconditional love for Nana, their silly happy smiles, and enthusiasm for all things. Even old folks homes....

So, you can read the whole thing here on my website.

What's Your Name Again?

Art Imitates Life, or is it the other way around?

2010-08-06T16:25:00.000-07:00

Busy Days

2010-08-06T16:18:00.000-07:00

one day at a time

Where to start when so many things I want to "blog" about happen at once? Could this be how Peggy feels?? Trying to process something in the past when the future keeps zooming along.

What's Your Name Again?

2010-07-27T19:11:00.000-07:00

I've been working on a children's book for 3 years about Sunny and my Mom....this weekend is the SCBWI conference (Society of Children's Book Writers and Illustrators) Right Now I am putting together a book dummy....like a mock up of what the book could look like if published. Wish me luck!!!! More about it later, I've got to get back to work!

Everyone is coming!!!

2010-07-23T13:03:00.000-07:00

I'm so excited. We are all going to be together for Peggy's 80th birthday. David, Paul, Lois, Peggy Lu and our spouses and kids. Joan is coming down too. Peggy helped raise all of us, and I'm just so happy we can all be together because of her....

My Mother's Advocate

2010-07-22T21:42:00.000-07:00

Not something I do well. I had a "nice" discussion, and then came home picked up the phone and left what I really wanted to say on his voicemail....

My friend just sent me this....

2010-07-20T22:23:00.001-07:00

Pfizer Corp. announced today that Viagra will soon be available in liquid form, and will be marketed by Pepsi Cola as a power beverage suitable for use as a mixer. It will now be possible for a man to literally pour himself a stiff one. Obviously we can no longer call this a soft drink, and it gives new meaning to the names of "cocktails", "highballs" and just a good old-fashioned "stiff drink".Pepsiwill market the new concoction by the name of: MOUNT & DO. Thought for the day: There is more money being spent on breast implants and Viagra today than on Alzheimer's research. This means that by 2040, there should be a large elderly population with perky boobs and huge erections and absolutely no recollection of what to do with them. If you don't send this to five old friends right away there will be five fewer people laughing in the world.

Forget Memory by Anne Davis Basting

2010-07-17T07:37:00.000-07:00

Forget Memory

This book is a wonderful way to look at the effects of Alzheimer's. And yes, there is a wonderful way to look at it. After the cherry pie, I read through this again, and felt confidence in how I am with my Mom.
Trust me, I had my hand in the toilet for an hour trying to get a urine sample from Peggy. And it was okay. It was probably one of the silliest times I have ever had in my life. I brought new clothes for Peggy over and stopped at the library and got videos and books for the girls and we went over for the afternoon. Because I really wanted to accomplish this "tinkle task"again, (yes, this is not the first time I had to do this.) It's hard enough to get my girls to go on the potty. But I do, so I was up for the challenge! Anyway, the girls kept coming in the bathroom giving her dixie cups of water and doing a fashion show of Nana's new clothes, dragging them on the floor and giggling like crazy, as I constantly had to explain to my mother why I had my hand in the toilet and what tinkle was, and.....it makes me laugh, not cry, and that's okay.

I'm sure this is the most ridiculous review of a very helpful book, but please add this to your collection if you are researching or curious about the disease.

p.s. no tinkle.....

Cherry Pie with Carey Grant

2010-07-15T08:09:00.000-07:00

There have been a lot of changes with Peggy lately.... she is really can't walk at all anymore, and is in the wheelchair all the time. She also has developed a weird kind of stuttering, a hyper high pitched nanananannananananannnanNANANANANAN! kind of sound, ususally goes with a finger point and then laughter. There have also been some major changes at Sunrise. Changes in staff and fees. I got a letter saying that she was going to be moved to a plus plus care level....(more money). I have to admit I was really taken a back by this, I was very frustrated and quite offended that we didn't have a conversation about Peggy. Instead, I got a form letter. I am a present person there, and not being involved in any conversation regarding Peggy, I felt very very....sad,angry and deceived. I have to be my mother's advocate on all levels. So I took her to the Doctor and we talked about what's happening, what it means. It means it's a degenerative disease. It's going to get worse. I know that. But how? Time. How much? Years? Geez....I cried at the Doctor....ugh. More drugs? Back on drugs? That's my decision. I don't think so...I know where this is going, I just want it to get there....and that makes me cry.

So I took her out for cherry pie. This diner had these old Hollywood Pictures, she loved Carey Grant and kept asking who that was. She liked looking at all the pictures. I started to relax with her, it took a while to just let it all go, let her be who she is now, and for me to just get a piece of pie too.

When I brought her back to Sunrise, I was able to handle this stupid disease again. I talked to the nurse there, made an appointment to talk to the management. Went and bought her some new summer clothes at Drapper and Damon's and went home. Hugged the girls, wrote down all the follow-up appointments on the calendar and thanked my husband for watching the girls while I spent the afternoon helping my mom.

Just watching Tv with Nana

2010-07-15T07:45:00.000-07:00

The Scholastic Books classic video series

one step at a time

2010-07-06T11:24:00.000-07:00

When my mom was first diagnosed we all took it one day at a time....now it's one step at a time. Alzheimer's seems to have a progression like a stair case. Steps. Not a slide where she slowly fades away or becomes more confused. Big giant steps where one day she can do or remember something and the next day she can't and then that's where we are.

The other day this nice gal was doing a painting lesson with the residents. The girls were excited and jumped right in. Peggy was over by the TV area. So I got her up and wanted her to join everybody. I swear it took us 20 minutes to walk 50 feet. Every step would be "where are we going?" and I would respond... "over there, with the girls, see them?" Then Peggy would say "Oh, okay, how wonderful." and not move. I tried to get in front of her and coax her, I tried to walk with her, I tried to hold her arm, say different things....then she might take one tiny step and then it would start all over again. "Where are we going?" She has no forward momentum. She can't take a step, because she doesn't remember the last one. She's stuck in this place. She's stuck in this place of...I don't know....she's constantly on rewind and the tape keeps playing shorter and shorter.

We finally sat down and I think she enjoyed watching Sunny paint right across from her. She always says how beautiful we all are, and she is still present, she is still here, and so are we.
More photos of our paintings can be found here....Painting with Peggy

"Mom, watch me!"

2010-06-14T22:05:00.000-07:00

I know I keep saying that I must enter her world to have true understanding and compassion. Well, I threw that theory out the window and today I took her into mine. When I went to Sunrise today she was still asleep. She didn't want to get up. I hung around the room, put things away...kept talking to her and she started to smile. I had brought fresh orange juice and slowly she started to get up, then sit up, and then we drank it. I remembered how when she lived in Florida we used to go to the best Orange juice stand in the world, you could drink cold free orange juice out of these paper cone cups. mmmmm.....I told her about that. Then everyone helped get her ready....

And there she was all ready to go, somewhere? Okay! I had to go get Gidgey from school, so I took her with me, I had enough time and a wheelchair. It's no easy feat getting her in and out of that thing, or the car for that matter, but I was up for the challenge. It was a beautiful day here, the Jacaranda trees are incredible. So...I took her into my world. I wheeled her to Sunnyside! Where I have painted murals, and have made a place for myself in "California". She's always, always asking me where I live.
So today I showed her.

I showed her what I've done, who I am, my girls, my friends, my world, what I've grown up to be, and where I live.

Holding My Mother

2010-06-11T09:42:00.002-07:00