TOUCHING THE FACE OF GOD

TOUCHING THE FACE OF GOD.

I'm not sure which is worse...losing someone you love suddenly or losing someone you love slowly. I don't know about the suddenly but I know, first hand about the slowly. 

When a loved one dies suddenly...you don't have a chance to say good-bye.  Alzheimer's disease gives you a long time to say good-bye but with one major catch....the person who is going away cannot say good-bye... back to you.

 Our family is living...The Long Good-bye.

Peggy is stretching her arms to heaven. She is reaching out to touch the face of God and will continue to struggle for years.  Other's touch God's face in an instant.

I wish that I could let her stand on my shoulders so that her reach would be longer and her fingers could softly touch the face of God..

Even though I will miss her when she reaches her goal. I will celebrate with her when her Long Good-bye is over.

Alzheimer's disease has been a teacher. It has taught me how fragile life is and the pain of not being able to say good-bye. 

 Alzheimer's has taught me patience, persistence, fear, frustration, anger and what a living death really means.

It has taught me that it is harder on family members to watch a loved one disappear than it is on the person afflicted with the disease.

It has taught me that Alzheimer's is not just an elderly person's disease. It can strike a young woman in her 40's with just as much vengeance.

Alzheimer's disease has taught me that a Sister is forever........death will not end our sister bond....

Even as she continues to disappear from my life.

I Love You Today, Peggy! 

Love You....Mean It!!!

Mary Louise

 

 

A BLANK PAGE

The Blank Page of Peggy's MIND.....

Peggy wouldn't talk with me today. She was distant and cool. I couldn't draw her out so the conversation was short.

After I hung up the phone, I thought... how blank her mind and voice seemed today. Just like a piece of paper with all the writing barely visible.

I think that we keep the storied pieces of our past stored in our being and they remain in our cells forever. We may not remember all of them but they are there... waiting to emerge.

Yesterday, I though of something that I haven't thought about in years. It just popped into my mind from nowhere.

I thought of the vegetable bus that came by our house when I was a little girl. Mr. Millwee owned it and to everyone he was, The Vegetable Man.       His bus was filled with vegetables and goodies. We would run to the bus as soon as it stopped in front of our house. We always has a little money to by something. If we didn't have any money, Mr. Millwee would give us a sucker. It was always a treat to see the Vegetable man coming down the street.

That memory has been imbedded in my being and came back for no apparent reason.

Peggy's memories are floating away and she has no remembrances of the Vegetable Truck or of Mr. Millwee. She has lost past memories that would comfort her today and she cannot make memories for the future.

Alzheimer's has stolen all of the memories that were imbedded in her cells. They have been erased from the pages of her lifetime journal.

Peggy's mind is becoming a blank page in the book that we call life.

She can no longer pick up the pen, that is her mind and record memories and thoughts for her cells to recall suddenly on a Sunday afternoon.

I see Alzheimer's sitting before a giant computer and staring at the written words of Peggy's life.

He takes his fingers and hits the backspace key over and over. As he deletes, Peggy's written life disappears, one letter at a time.

Alzheimer's continues to sit at the computer that displays Peggy's life on it's screen. He will continue to delete her memories until her mind is a blank page and all the words of her life have disappeared.

I am thankful that I have so many memories of Peggy stored safely in my cells and in my being.

I will recall them suddenly... one Sunday afternoon and smile.

I Love You Today, Peggy.

Mary Louise

THE CHAIR......PEGGY'S SAFE PLACE

 We had a very vocal electrical storm last evening.  As the lightening streaked across the dark clouds, it turned night into day. It was as if someone or something was turning a lamp off and on.

While I watched the storm, I thought about Peggy.  I thought about the storm that is raging through her brain. The storm called Alzheimer's sends lightening streaks to the message centers of her brain and when the lightening strikes...it turns her thoughts on and off.

Alzheimer's brainNormal brain  

 

I was on the phone with Peggy for over an hour this morning trying to convince her to get out of her chair and go to the bathroom. The sitter said that she had tried everything. I asked to speak to Peggy and I was sure that I could convince her! After all, we are best friends.

She would say O K to my suggestion that she should stand up but she would not budge from her chair. I told her that I would stay on the phone with her and we would walk to the bathroom together.     I told her that I needed to go to the bathroom and I wanted her to go with me. I tried everything to help her but I couldn't get through the storm of Alzheimer's.

When I finally said good-bye, Peggy was still in her chair and I felt like a failure. I really hoped that she would listen to me and feel safe enough to leave her chair. As hard as I tried, I could not get through the electrical storm in her brain with my love or humor.

 It was a very frustrating, sad call and the tears are flowing as I write because.......  I can picture Peggy sitting all day in her safe place......  

Her chair and she is looking at the world through the eyes of Alzheimer's.  

I Love You Today, Peggy!  

Mary Louise    

PLEASE LEAVE A MESSAGE

The answer machine picked up when I called Peggy this morning.

I left a message and told her that I Loved her today and would talk with her later.

Her husband said that when I leave a message, Peggy listens to it and talks to the message just like she is talking to me.

After he told me that, I remembered something that Longfellow said;

Give what you have to give.........To someone, ...it may be better than you think.

I hope that my calls mean something to Peggy. I would like to think that they do because it is all that I can give her now.

I am the stranger with the familiar voice. 

I miss so many things about Peggy. I really miss the confidence that she had in me. She always believed in me even when I didn't believe in myself.

She would be surprised if she knew how often a joke, a song, a memory makes me think of her. It is like a moment that we have actually spent together. It reminds me that a sister is a friend forever... I love her even though she has nothing left to give to me, nothing much to say to me or no recognition of me. I love her...Just Because!

Peggy is valuable just because she Exists....

Not because of what she does or what she has done....

But simply because she is Peggy..... My Sister, My Friend!            Max Lucado ( liberties taken)

I Love You Today, Peggy!

My Sister...My Forever Friend!

Mary Louise

 

 

 

 

THE DUNG PILE... CALLED ALZHEIMER'S

Watching Peggy disappear from Alzheimer's disease is like sitting in the middle of a huge dung pile. 

The stench is over powering and the dung clings to my body.         I know that I should get up and wash the dung off but when I try to stand up...the dung pulls me down again like quicksand.

So, on a day like today...I Just Sit in It!

I sit in it because Peggy has forgotten me!  And because....

I Can't Remember..... to Forget!

I miss you, Peggy.... MORE THAN YOU CAN REMEMBER.

I Love You Today, Peggy!

Mary Louise

 

THE STONE BENCH

Peggy was quiet today and answered with one word to anything that I said.

I told her about our cookout-swim yesterday and how Jordan and Lauren reminded me of us when we were girls. They were sitting on the stone bench by the pond talking about life just like we did so long ago.

I told Peggy about the picture of us sitting on a stone bench at home and how it made me smile. I asked her if she remembered living at 1805 St. Charles Court. I described how we sat on the bench and talked when we were girls... I recounted in detail how we would sit there and talk about everything.

OUR STONE BENCH

 

There was no recognition in her voice and tears filled my eyes.

 Peggy and I grew up.... We left the stone bench in our past. 

 We left our bench to make way for a new generation of Sisters.  

  A new generation to take their place on the bench. To sit there, side by side and talk about life and dream about the future.

Peggy's future has been decided for her by Alzheimer's disease. She is now sleep walking through life and going through the motion of living. Her mind is becoming as cold as the stone bench from our youth.

I wish with all my heart that we could travel back through time to the stone bench at 1805 St. Charles Court. Travel back one more time to sit on our bench and talk.

The stone bench is empty now.  It is waiting for two more little girls to come and sit and talk....

I wish that Peggy and I could sit side by side on the bench again and talk about life with all the excitement of youth.

I wish that we could have one hour to sit on our stone bench at home...... I wish that I could put my arm around her shoulders....

Just to say... Good-Bye.

 

I Love You Today, Peggy!

Mary Louise

 

 

THE DARK CLOUDS OF ALZHEIMER'S

I read a saying once that said...               

SINCE THE HOUSE IS ON FIRE...WE MIGHT AS WELL WARM OURSELVES!!!!!

That is how I feel about Peggy having Alzheimer's disease.  She has it and I can't change it so I  might as well warm myself on the LIGHT of Peggy that is still visible.

Yesterday and today's calls were different. She was trying hard to communicate with me but couldn't.

She said; I wonder..

What do you wonder??? I said.

Her reply was....I can't remember

Hearing Peggy struggle to remember is hard but she keeps trying and that is a trait that I have always admired in her.

Watching Peggy disappear from Alzheimer's disease is like watching a menacing storm approach. There is a bank of black clouds that resemble dark mountains in the distance. The darkness moves ever closer and continues to cover the blue and grey light of the sky.

Alzheimer's disease is that dark cloud...... it is covering the sun in Peggy's mind.  There is the rumble of thunder in the distance and it is promising a storm. A very destructive storm that will make the day look like night. Peggy was always afraid when it stormed but now, as her storm nears... she is very calm.

Her mind was as bright as the sun on a summer day. Now, darkness is sliding over her brain and covering her light.

I can still see the presence of Peggy shining around the darkness of the clouds. She is still shining to the best of her ability and that makes me smile.

I know that Alzheimer's will never give up until it's dark storm clouds have completely covered the light...

That was Peggy.

Photo by Burnt Canvas

I Love You Today, Peggy

Mary Louise

 

WATCHING BUT NOT WRITING

HELLO  READER FRIENDS,

My Computer is down!!!!!!!!! Hope to get it fixed soon.

I continue to call Peggy every day even though I am not writing in my journal.

I am writing my thoughts the old fashioned way and will record them in my journal as soon as I can.  Tonight, I am at the Library computer.

Peggy has been distant and as hard as I try...It still hurts so much for her to not know who I am.

I have truely missed all of your support.  The past few days have been difficult.  Your comments help me with this struggle more than you will ever know....  THANK YOU!

I will continue to come to the library to give up dates and information.

Take care and I hope to be back on line soon.

I Love You Today, Peggy!

Mary Louise

 

 

 

THE ANGELS CRY FOR PEGGY

AN ANGEL FALLS FROM HEAVEN WITH EACH DROP OF RAIN....TO GUIDE IT TO IT'S PLACE. ( author unknown)

 

Peggy was crying when she took the phone this morning.

The sitter said that she had tried to keep her from watching  President Reagan's funeral on television but Peggy insisted and had been crying as she watched.

When she said hello her voice was shaking. I asked her if watching the funeral on television had made her sad.   She said no.

Then, why are you crying,  I asked.

I'm not crying she replied. You're not?  I said.

No, The angels are crying.

The Angels? Who are they crying for Peggy?

Her answer was........Me!

My grip tightened on the telephone receiver as I searched for something to say to her. My mind went blank because I was so stunned.  I just told her that I loved her very much.

She said; O K. Thanks

Peggy no longer has words for her feelings so I am glad that she could cry this morning.

I am glad that she was crying because ...Tears are the words that the heart can't say and Peggy has forgotten how to use words.

How fitting on this National Day of mourning.

How fitting that the skies have opened up as I write and it is pouring rain outside. 

How fitting that the angels are crying for Peggy because I am crying too.

The angels cry Joy... for the person that was Peggy. 

I also cry for the person that was Peggy but I cry for myself, too.    I cry because I miss my sister and watching her disappear is one of the hardest things that I have ever had to do.

Alzheimer's Disease has cut her life short and is taking her away but as she flies away a little more every day.... I know that..

She was in the arms of her Guardian Angel as she cried this morning and she is safe. 

Safe.... as she finishes the  journey that is...Alzheimer's Disease.

 

Sarah McLachlan had a touching song that said... 

Spend all your time looking for that second chance...  

for the break that will make it OK

There's always some reason to feel not good enough and it's hard at the end of the day.

I need some distraction or a beautiful release... as memories seep from my veins.

Let me be empty and weightless and maybe...

I'll find some peace tonight...

In the arms of the angels far away from here........  In the arms of the angels.....may you find some comfort there.                           

I Love You Today, Peggy!

Mary Louise

DEAR PEGGY

Dear Peggy, I called you this morning but got the answer machine.

I hope you and your sitter are out walking in the sun. I wish that I could be there to walk with you in person but I am walking with you in my thoughts.

Remember when we were young and used to walk around the block in the summer? It felt like a great adventure then.

I miss you so much and wish we could sit down and talk about the old times, the fun times and even the sad times.

There are so many things that I miss about you since   Alzheimer's Disease claimed you as it's own. I miss you're asking me about how I am doing and what is going on in my life.

I wish you could tell me what it feels like to have Alzheimer's Disease.  Are you scared? I hope not because I worry about that.

I had "The Dream" again last night. The one where you are crying and pleading with me to help you.  You are on the other side of a huge piece of glass and I cannot get to you. I hate having that dream because today... it is reality.

I want to be there for you but as you continue to disappear from my life... but I don't know how.

Sometimes, I look at your picture and can see you making a square of your fingers and hear you saying with your big smile...Love You....Mean It!!!! M L. I would love to hear you say that to me...Just one more time.

I really thought that we would grow old together. All of the Sister's..Together always. Alzheimer's had other plans for you and took you away from all of us.

I read something yesterday that stuck in my mind. It said;

I always knew that I would look back and laugh at the times that we cried.     BUT....

I Never thought that I would cry at the times that we laughed!

I do, you know.

Peggy, I miss your wit and humor.

I miss the way you would tilt your head to the side when you were thinking.

I miss your hand gestures that were passed down by our Grandmother, Mama Colley.

I miss "That Look" when you saw my temper flare.

When I let myself think about what Alzheimer's has done to you, My temper does flare and even if you could give me the look that says, watch that temper of yours...

I would still like for Alzheimer's to take a form so that I could beat it to death with my fists. I would like to throw it to the ground and stomp the life out of it. It wouldn't have a chance if I could get hold of it. I would beat it from your mind and free you from your prison .

You have always been a gentle person and wouldn't even think of such things but I have and do.

I do think of beating A D to death when I see  the black holes where your green eyes used to look out at the world.

I think of  killing Alzheimer's when I hear you try to put a sentence together.

I think of stomping on Alzheimer's because of all the family times that you will miss.

I think of beating the life out of Alzheimer's when I think of your husband and daughters who need you so much.

I think of throwing Alzheimer's to the ground when I think of all the Sister trips that you will not be apart of ever again.

Alzheimer's disease has taken your bright, beautiful mind and turned it into ashes.

Every once in a while, I stir the ashes and see flickers of fire still burning there but they quickly go out and the ashes are dark grey again.

This is just not the way our lives were supposed to end, Peggy.

I wish that I could have an hour and we could say good-bye properly but I know that we will never have that opportunity.

You were a good sister to me and I miss you more than I can write. I just wish that you still remembered that we were sisters but you don't. I know you would if you could so I will remember for you, O K?

Maybe, they will find a cure for this terrible living death!

I just wanted to write to you today and tell you how much I miss you. I have cried a million tears over losing you. If I could...I would stack them upon one another so that I could reach you in your world.

 We don't have today anymore but we had wonderful yesterdays and I will treasure those times always.

I Love You Today, Peggy!  LOVE YOU...MEAN IT!

Mary Louise

 

 

THE MASTER MAGICIAN...ALZHEIMER'S

Peggy was confused today when I said good-bye.  I asked her who she was talking with and she said.. Barbara.

The Alzheimer's Magician was at work in her mind this morning confusing her with its bag of magic tricks.

I have never liked magic or Magicians, especially when I was a child. It was frightening to me to watch a person create the illusion of making things and people appear or disappear. There was something dark and powerful in the very act itself that always disturbed me.

Maybe, this is the apprehension that I feel as I watch this evil magician, A.D. play with Peggy's mind.

The Alzheimer's Magician stands at the side of her mind every morning and waits until Peggy wakes up to take the stage.

The Wizard saunters to the center of her brain and begins it's magic show for the day.

He takes his baton and waves it to create a cloud of smoke that fills Peggy's mind and forbids her to remember or think.

This sorcerer has a bag full of tricks in his black top hat to use on her mind every day.

With a slight of hand he manages to jumble her thoughts and her remembrances. He can tangle the messages of her brain so expertly that she sees and hears people who are not there. Then, he waves his black cape over Peggy's mind and instantly clouds any thoughts that enter her brain . He raises his gloved hands above her body and she is totally alone and under his spell.

This Magician called Alzheimer's Disease will continue to work his black magic on Peggy's brain every day....Until his show is over.  

Then, he will give an evil smile and pull his black and red cape over his face. He taps his crooked, icy fingers on his black silk hat and in a puff of smoke, vanishes into thin air. His magic act with Peggy has been successful...

He will then begin to stalk the world looking for another person to be his assistant.... To be his next partner in the black stage show called...

ALZHEIMER'S DISEASE!

I Love You Today, Peggy!

Mary Louise

I always knew that I would look back

and laugh at the times I cried,

but I never thought I would cry

at the times we laughed...

(little sayings from..deanie)

http://www.sharingcare.com

Ronald Reagan dies from Alzheimer's Disease

http://www.sharingcare.com

GOOD-BYE.....

Former President Ronald Reagan died this weekend of complications from Alzheimer's Disease.

I am glad that his struggle is over. I'm glad that Nancy's struggle with his living death is over.

It doesn't matter who you are, how intelligent you are, how educated you are, how loved you are. Alzheimer's Disease decides  when it will enter a mind and whose mind it will destroy.

Ronald Reagan lasted 10 years after he was diagnosed. He was 82  at diagnoses and 92 years old when he died.

 I wish that Peggy had been 82 when she developed Alzheimer's and not in her 40's. I wish that she had lived 40 more years of remembering and health. I wish, I wish, I wish........

Nancy Reagan said that this was the Long Goodbye and that the worse thing was that she couldn't share all of her memories with him or he with her.

I applaud her efforts to continue research to discover a cure for this vicious disease.

You only have to watch a life disappear...to feel the same way.

You only have to feel forgotten to feel the same way.

You only have to be erased from memory to feel the same way.

You only have to watch some one you love waste away to feel the same way.

You only have to cry a million tears to understand how Watching someone you love disappear from Alzheimer's Disease tears a heart apart.

I Love You Today, Peggy!

Mary Louise

A STATUE CALLED PEGGY

The sitter said that Peggy was quiet today and wouldn't get out of her chair. She also said that she couldn't get her to eat or to respond in any way.  She warned me that she might not want to get up and come to the phone or talk with me.  The sitter didn't want it to hurt my feelings if Peggy wouldn't come to the phone.   The sitter said to Peggy; it's your sister, MaryLouise.                    

 I waited for  seconds that seemed like minutes thinking that she wasn't going to get up and come to the phone but then..... There was a small voice on the other end of the phone line that said...Hello, in a sad tone.

It made me smile that she got out of her chair to talk with me and sad that she sounded so down. My heart tore a little as we talked. She was so lost and this is something that her big sister cannot make better like I could when we were children. We had the usual conversation and I asked her if she  was feeling bad today. No, she said. We..or I chatted away and she was laughing when we said good-bye.

Maybe, my calls do help even if she doesn't know who I am any longer.   I wonder what is going on in her mind when she gets in these  places where she won't or can't respond.  I do know that the Alzheimer's monster is doing more destructive work in her brain every day. Alzheimer's is ending her life but it will never end our relationship.  

 Peggy is becoming a statue. The shell of her is still here but her mind is slowly being transformed into granite. Her thoughts are going through a process of crystallization. Her memories are being extracted.... one at a time.     For the time being...she can still reach out from her world as a statue and touch my life but that will slowly come to an end. I am trying to prepare myself for that day. I know in my heart that I will never be prepared for the Silence of Peggy.  

 When the process is complete...Peggy will be frozen in time. A living, breathing statue that cannot reach out of her cold, stone world.        When Peggy has completely turned to stone, I will cherish the Indian folklore story about stones. It is said that if you find a stone that has an imprint of any kind on it...... that stone has the spirit of a person safely preserved inside.  

Peggy will turn to stone one day but when she does....I will still see the imprint of who she was on her face and seeing that...   I will know that her spirit...still lives on.

             

 I Love You Today, Peggy!          Mary Louise  

THIS PLAY THAT WE CALL....LIFE

Peggy's voice was so flat today. I asked her if she felt all right and she said yes.

She was distant and seemed tired. I went through the usual questions and she answered each one with no emotion.

I said; Peggy, do you know who this is? Yes, she replied.

I said; Who is this?

Her reply was....You.

I just can't fool you, can I, I said.

No....Thanks

Bye Peggy. I Love You Today.

Bye...Thanks

The tears fell as I hung up the phone.  I had completed another call and another day of Watching My Sister...Disappear.

 Talking with Peggy today was like seeing a curtain come down in a theater after a play has finished.

It was as if the curtain had been drawn, the play was over and everyone had gone home... leaving the theater empty, dark and quiet.

No more rehersals..no more opening nights..no more applause.

Just the quiet of an empty theater.

 I see Peggy sitting center stage in her familiar position. Legs hugged to her chest, arms wrapped around her knees. The theater is dark... She sits behind a beautiful red velvet curtain, all alone in her play... called Life.

  The play will not begin again, the curtain will not rise, the lights  will not shine on her until the play begins its run in heaven.

Then....

Peggy will be a Leading Lady once again!

 HEAVEN'S THEATER

I Love You Today, Peggy!

Mary Louise

SUMMER AND THE OLD SWING SET

 Peggy didn't want to talk with me today. She crunched on ice as I tried to talk with her.                                                                      How fitting, I thought because her mind has turned to winter and all of her memories are frozen.  I felt frozen out of her life this morning and dismissed by the winter of Alzheimer's.

 I  got tired of trying to talk through the ice and said good bye and that I loved her today.

Her response was... crunch, crunch..O K.   

I am completely frozen out of her thoughts and all of my summer memories cannot melt the ice in her mind.

 I keep visiting our old playground hoping to find her there. To see her smiling, laughing and talking to me again while we swing together in the summer sun.

Peggy no longer remembers our play ground or me. She cannot recall the fun we had in the warmth of our youth.

She doesn't remember the hours we spent on the swings trying to reach the clouds with our feet. She doesn't remember jumping off and sailing through the air. She doesn't remember the laughter or the tears when we fell to the ground.

The old playground is empty and the snow of Alzheimer's has covered the swings with snow that cannot be described or melted.

I will keep visiting the playground and hope that one day...The sun will be shining and the snow and ice will have melted. And for that moment in time...We will swing again in the warmth of our summer memories. We will swing as high as the clouds and on that last jump from the swings.....Peggy will not land on the ground but in the arms of the angels. They will take her to a safe place where there is only warmth and the winter in her mind will be melted at last.

After Peggy is gone...I will continue to visit the old swing set in my mind.  I can see Peggy's empty swing moving in the wind.  It brings a smile to my face because the swing's continued movement is Peggy.... waving hello to me. 

I Love You Today, Peggy!

Mary Louise