FLOATING ON THE OCEAN

Once, while at the beach, my husband and I trudged through the hot sand with colorful floats in tow, to reach the water.

We were going to float in the warm sun and water. The Gulf was calm that day and it felt safe to float. We plodded to waist high water and laid down on the floats and closed our eyes. We held each others hands so that we would stay close to one another.

Soon, in our contentment, we let our hands go. We drifted out to sea and didn't even notice until we heard the shrill whistle of the life guard. His whistle kept blaring again and again. I was aggravated because the sound was playing havoc with my dreamy rest upon the sea.  I opened my eyes and gasped when I saw how far we had drifted from the shore. Fear ran through me as I also saw the life guard jumping up and down on the beach. He was flailing his arms with a "come in" motion.  It was not a come in when you have time motion but a come in...Now motion!

I remember the chill of fear that ran through ever fiber of my body as I thought...Maybe, the life guard has seen a shark!

We turned our floats sideways and began to paddle back to shore but the harder we paddled the farther we drifted out to sea.

My husband was ahead of me and kept yelling, paddle harder, Mary Louise. Paddle harder!

My legs felt like they had been filled with cement as I continued to make my way to shore.

After what seemed like hours of paddling, we finally made it back to shore and collapsed on the warm sand.

We had made it! We were safe!

The life guard warned us to never get out that far again.  Through our panting and catching our breath, we nodded our heads in agreement.

We had gotten caught in a rip tide that was taking us farther and farther from the safety of the beach and out into the shipping lanes.

The interesting thing about it was that it happened so calmly and slowly that we didn't even notice that we were in danger until our ears heard the shrill sound of the lifeguards whistle.

This is how Alzheimer's disease slowly and calmly entered Peggy's life.

She was floating through life and began to notice that she was forgetting important dates. Then she noticed as she handled money, that she could not figure out how to make change.

Slowly and calmly she forgot where she had put her jewelry and other things. While driving, she realized that she couldn't remember how to get home.

She was drifting out into the Alzheimer's sea on the colorful float of her life.

She was taken to a Doctor who would became her lifeguard.  The Doctor began to blow a warning whistle but it was too late for Peggy to hear.

Peggy could not hear the  shrill, warning whistles that the Doctor was blowing because she had already drifted out into the shipping lanes of the Alzheimer's sea.

Now, Peggy is lying on the colorful float of her life. Her eyes are closed and she is calm as she continues to drift away.

I can still see her from the shore. I see her drifting farther and farther away.

I jump up and down on the warm sand and frantically wave my arms trying to call her back to shore.

She doesn't hear me or see me as I motion for her to come back to the safety of the beach and to me.

Peggy just keeps drifting away and will until she is just a dot on the horizon in the Alzheimer's ocean. 

One day, with Alzheimer's research, a boat will be launched...

 and people will be pulled from the icy waters of this disease to safety.

But for Peggy....

The rescue has been called off and the rescue ship will never reach her in time. 

She will continue to drift until she is out of sight of the shore and of the people who love her....

Peggy will disappear from the horizon but she will never be forgotten by a lonely figure standing on the shore of life and searching the water of the Alzheimer's ocean.

Searching..... For Peggy...

So that I can say to her...

You have made it...You are safe!

I Love You Today, Peggy!

Mary Louise

 

THE WINDOWS OF THE SOUL

I have become aware of the "look" of an Alzheimer's patient and I can easily spot a person with the disease.

I was at the post office one day and noticed a woman sitting in the car that was parked next to mine.  I got out of my car to go into the post office and I smiled and said hello to her. She slowly turned her head to look at me. When she did..I saw the eyes of Alzheimer's staring back. A dark, blank stare that made me suck in my breath.

The eyes of an Alzheimer's patient eventually turn dark and cold even thought they may have been bright blue, brown or green and laughing with emotion. 

The eyes that reflected the emotions of the soul are slowly dimmed as Alzheimer's takes control of the brain.

Peggy's eyes were green but now, they are round, dark and cold.

 

There are new discoveries in the fight of this terrible disease for so many people and for that, I am thankful. I just wish that Peggy could benefit from the new therapies but I know that it is too late for her.

Alzheimer's disease kills the cells in the brain until there are no open windows to the soul. It draws dark black shades over the eyes and blocks expression from going into and out of the brain.

There is a couple that has been walking down our street for some time. The man always has the woman by the hand and she walks fast to keep up with him.

I mentioned to my husband that I thought the woman probably had Alzheimer's disease. I could tell by the protective way he held her hand and the way she followed him like she was a child. I could also tell by the way they are walking and not talking. I have never seen a vocal exchange between them as they walk by my house every day.

I was at my mailbox when they passed by today and I said hello to them. The man nodded and said hello. The woman slowly turned her head to look at me and when she did, I saw the eyes of Alzheimer's disease.

Alzheimer' makes it impossible for the eyes to see because there is nothing left in the brain to express emotion, even the emotion of saying hello.

I walked back to my house in tears.....

Tears for this woman who was once a bright soul with shining eyes.

Tearsfor Peggy who was also a bright soul with shining green eyes.

Both of these women have had the window to their souls closed by this disease but the windows to my soul were shining as I slowly walked back to my house.

They were shining with tears for all of the bright souls of the world whose windows have been....

Closed forever by Alzheimer's disease.

The windows to Peggy's soul have been closed but the windows to my soul are shining with all the memories of growing up....

Sisters.

I Love You Today, Peggy!

Mary Louise

 

 

PEGGY TODAY

Alzheimer's disease will eventually take away Peggy's ability to smile along with any other emotions.

So far, she still has a smile in her heart and in her face.

Her beautiful smile in these pictures, taken 2 weeks ago made me smile too!

Smile~~~~~~~

Smile though your heart is aching...

Smile even though it's breaking.

Though there are clouds in the sky, you'll get by....

If you smile through your pain and sorrow...

Smile and maybe, tomorrow...

You'll see the sun come shining through, if you just.......

Light up your face with gladness...

Hide any trace of sadness...

You'll find that life is still worth while....

If you just smile........

I Love You Today, Peggy!

Thank you for putting a smile of my face today.

Mary Louise

NO WORDS

Sometimes... I cannot put words to my feelings after a call to Peggy.

Sometimes...There are no words as I continue to~~~~~~~      Watch My Sister...Disappear!  

 

 I read this somewhere and I am struggling to take it to heart today.

 

   DON'T CRY BECAUSE IT'S OVER;

    

  SMILE, BECAUSE IT HAPPENED!   Peggy and Mary Louise

  

I Love You Today, Peggy!

Mary Louise

MY RULES FOR CALLING PEGGY.

RULE: 1. An authoritative regulation for action, conduct, method, procedure, etc. 2. An established practice that serves as a guide.

I have had to learn to live by a set of rules when calling Peggy.

All of the rules that I knew when talking with her went out the window when Alzheimer's entered her mind and destroyed  her thoughts and memories.

Here are my rules but I don't always follow them.

RULES........

1. Talk to Peggy like she remembers who I am.

2. Tell her that I love her today.

3. Don't get hurt feelings when Peggy hangs up the phone while I am talking to her.

4. Remember that she cannot help what has happened to her.

5. When I ask her to sing a song...don't cry when she forgets the words.

6. Ask questions that require more than a yes or no answer.

7. Recount memories of growing up at home.

8. Tell her that she is a beautiful person.

9. Ask her what she ate for breakfast or lunch.

10. Repeat numbers 1, 2 and 3.

11. Stay calm and be understanding.

12. Be patient and flexible.

13. Don't argue or try to convince her of something.

14. Try not to take her behavior personally. Accept the behavior as the disease talking and try to work through it.

15. Remind myself that the Peggy that I knew is gone even though her voice sounds the same.

16. Repeat 1, 2, and 3.

I Love You Today, Peggy and I Miss You!

MY SISTERS HAVE TAUGHT ME HOW TO LIVE.          (George Wasserstein)

Mary Louise

THE COLD, CHILLING RAIN CALLED ALZHEIMER'S

Have you ever been walking in the Spring or Summer and suddenly it started to rain?

The air is warm but the raindrops are cold as they come in contact with your skin. The cold drops send shivers through your body.

This is what it feels like as I continue to watch Peggy disappear.

Sometimes, it is hard to hear the warmth of her familiar voice and the coldness in her words.

I will continue my walk with Peggy this spring as the cold rain falls into my heart and sends shivers through my body.

This walk in the rain is called life and we all experience it's warmth and it's chill. Each of us must decide how we will react to a situation when the rain falls in our lives.

I had an umbrella of hope for years and when I called Peggy, I could stop the cold, chilling rain of Alzheimer's from touching my skin.

Now, the umbrella of hope has been folded and put away and we are both soaked to the skin.

I will continue to walk in the cold rain of this disease as it continues to drown my sister.

I can either look back and see how much I have lost or look forward and see how far I have come. 

I do look back sometimes and cry at the unfairness of this disease touching Peggy's life at such a young age. But I was never promised that life would be fair and life has been very unfair to Peggy.

The Alzheimer's rain is pouring down on her and there is no umbrella that can protect her mind from the flood of this disease as it drowns her thoughts, memories and future.

I remember the summer rains when we were children. I remember playing in the cold rain and watching Peggy twirl around to try and catch the drops in her mouth.

I cannot stop the Alzheimer's rain from pouring down on Peggy but......

I can walk with her as.....

 She continues to drown.

I Love You Today, Peggy!

Mary Louise

 

AIN'T IT FUNNY HOW TIME SLIPS AWAY!

This is another year of Watching Peggy disappear before my eyes.

This is another Spring.

This is another month.

This is another week.

This is another day.

This is Thursday, April 14th and I made another call to the stranger with the familiar voice.

This is another day of.....

Watching My Sister, Peggy Disappear from my life!

I Love You Today, Peggy!

Mary Louise

WALKING THE TIGHTROPE

The answer machine picked up today when I called Peggy.

I have to say that I was relieved.  I was relieved because for one call, I did not have to hear her struggle with understanding me or hear her struggle with words.

There is a part of me that feels ashamed that I felt so relieved and another part of me that says...It's OK to have a break.

The calls to Peggy are like walking a tightrope without an umbrella or pole for balance.  

Alzheimer's disease stretched the tight rope and it is up to those of us who love her to walk the line to where she is in the disease. She has no ability to walk the tight rope back to us.

I walk the tight rope and feel like every call is a performance. I attempt to sound up and happy but I don't feel happy when I talk to her. I am usually exhausted when the call is finished.

 She will  probably be going to a nursing facility by the end of the year. When that happens, I will not be able to talk to her on a daily basis. I will miss hearing her voice because that is the only part of Peggy that is still familiar.

So, I continue to call her and do my high wire and balancing act.

I continue to pretend that she knows who I am, laughing and trying to sound..normal when I'm not sure what normal is any longer with Peggy.

I choose to remember the Peggy with the laughing green eyes and beautiful smile. The Peggy that was always ready to listen to my hurts or problems. The Peggy who was as close as a phone call.

She was always there for me by a phone call and so I will continue be there for her by a phone call.

The difference is that with each call...

I am talking to my sister, Peggy and hearing her familiar voice while she is listening to a stranger and trying to talk.

So today, we both had a break but my mind goes back to the year that Peggy said something to me that gave me chills.

The call years ago when she knew that something was very wrong with her and she told me this....

She said, I can't go anywhere.

 I said; why Not, Peggy?

She replied...I can't go anywhere because I HAVE LOST ME!!!!!

She is lost in Alzheimer's disease....

but the tight rope is stretched and all of us who love her continue to try to walk across the rope and find her because love never gives up.        

Our faith is the pillow below us as we navigate the tiny wire to find Peggy!!!

I Love You Today, Peggy!

Mary Louise

 

WILL YOU KNOW MY NAME?

 

Tears In Heaven by Eric Clapton and Will Jennings

Would you know my name
If I saw you in heaven?
Would it be the same
If I saw you in heaven?

I must be strong
And carry on,
'Cause I know I don't belong
Here in heaven.

Would you hold my hand
If I saw you in heaven?
Would you help me stand
If I saw you in heaven?

I'll find my way
Through night and day,
'Cause I know I just can't stay
Here in heaven.

Time can bring you down,
Time can bend your knees.
Time can break your heart,
Have you begging please, begging please.

Beyond the door,
There's peace I'm sure,
And I know there'll be no more
Tears in heaven.

Would you know my name
If I saw you in heaven?
Would it be the same
If I saw you in heaven?

I must be strong
And carry on,
'Cause I know I don't belong
Here in heaven.

TIME CAN BRING YOU DOWN, TIME CAN BEND YOUR KNEES. TIME CAN BREAK YOUR HEART, HAVE YOU BEGGING, PLEASE......

 

The phone calls to Peggy yesterday and today were difficult.    Peggy just said "what" to everything that I said to her.

It was as if I was speaking in a foreign language and she was struggling to understand what I was saying to her.

Or, it was like she had lost her hearing and could barely hear my voice.

I found myself speaking slower and louder to get her to understand my words.

I told her that I loved her today and she said, What?

I love you, Peggy, I repeated...silence and then... What?

Peggy, this is Mary Louise, your sister........What???

Peggy, can you hear me?  What??

She couldn't hear or understand my words.

She couldn't understand my love for her.

She didn't know who I was as I talked to her.

So...

Will Peggy know my name when I meet her in heaven? Will it be the same, when I see her in heaven? I must be strong and carry on cause I know...I don't belong...here in heaven.

Peggy is living in her own world, her own heaven. She is living in a place where I am not welcomed and I do not belong.

Peggy doesn't know my name or who I am and so I must be strong and carry on.........because I know that someday she will walk up to me and say.....

Hi, Mary Louise!

I Love You Today, Peggy!

Mary Louise

SEARCHING

SEARCHING : To go over or look through for the purpose of finding something;  an act of searching; scrutiny,  inquiry or examination in an attempt to find something, gain knowledge, establish facts, etc. 

IN SEARCH OF:  making a search for; trying to find, learn, etc. by searching.

Ever since the day that I called Peggy and she didn't remember who I was...I have been searching for her.

I have been searching for recognition in her voice.

I have been searching for shared memories that only we knew. 

I have been searching for the Peggy that I grew up with.

I have been searching for my sister, my friend.

Even though I know that it is not possible for Peggy to remember, I keep asking her if she knows who I am.

I keep trying to get her to remember me and that we are sisters.

I know in my head that all of her memories of us are gone.

I know that in my head but not in my heart.

I get angry sometimes and indignant thinking, How could she have forgotten me!  

Even today, I kept searching her words and hearing no recognition in her voice.

Peggy is forever lost, I know that, so why do I keep searching?

Maybe, I am not searching for Peggy at all.

Maybe, I am searching for me.

Maybe, just maybe, I am trying to find the Mary Louise that I used to be before Alzheimer's entered my sister's life.

Maybe, I am searching for the laughter that I had before Peggy got sick.

Maybe, I am searching for the peace that I had before I started to worry that I too, may get the disease.

I had thought all along that I was still searching for Peggy but the truth is that I am now in a search.... to find me again!

I am searching for the carefree, fun loving, risk taking, lighthearted Mary Louise that I lost when my sister, my friend got Alzheimer's disease and she forgot who I was.

When someone you love forgets who you are, forgets your history together, forgets shared feelings and memories, it does something to your inner-core.

It wounds a special place in your soul where you still remember but they do not. 

So, as I watch Peggy disappear....

I continue to search .....   

I continue the search to find....Me!

I Love You Today, Peggy!

Mary Louise

 

SPRINGTIME

Spring has finally arrived in Ohio. The sky is blue, the birds are singing and the spring flowers are blooming. The grass is greening and the sun shines warm.

Spring has arrived with all it's glory.

 I talked to Peggy this morning and I was aware, by the flat sound of her voice, that spring will never come into her life again.              I felt frustrated while talking to her because I was trying to find a little spring in her voice.

Her voice was covered with the ice and snow of Alzheimer's disease and it has come to stay in her life. Her brain is frozen and will never thaw.

She can no longer appreciate the wonderful sights and sounds of Springtime.

Peggy doesn't miss springtime with her husband or her daughters. She doesn't miss springtime with her brother or her sister's because she can't miss people or seasons that are no longer stored in her memory.

 I went for a walk this morning after talking to Peggy. I needed to clear my head of the winter that I heard in her voice.  I turned my face to the sun and welcomed the warm rays.  I took a deep breath and smelled spring. I smelled the springtime of all of my memories of Peggy.

Winter would be a difficult place for me to live because....              I remember Spring.

I thought about the constant winter where Peggy lives and sadness covered my heart.

I was sad because I know that she will never be able to appreciate spring again.

Then, the thought came to me that Peggy is not sad that she lives in the winter of Alzheimer's.  

Peggy is not sad, happy, afraid nor does she have any of the emotions that I had as I walked in the warmth of the spring sun. 

When Alzheimer's entered her life, it took her thoughts and feeling away. It took the springtime of her forties and now early fifties away.

Alzheimer's disease has only one season and that season is....Winter.

Peggy's mind is frozen and spring will never come again but she has no sadness about seasons or people that she doesn't remember.

This morning, as I was about to hang up after my call to her, I started to cry.

Then,  Peggy reached through the phone lines and touched my wounded heart with a little spring.

My tears thawed a place in her winter mind and there was a burst of spring in Peggy's voice as she whispered...don't cry.                Then winter returned to her voice once again.

My memories of Peggy are precious and painful because...

She doesn't remember springtime or me and......

I can't remember....

To forget.

I Love You Today, Peggy!

Mary Louise

A POOL OF TEARS

Peggy refused to talk with me today.

I know that she can't help it but it hurt when she didn't want to speak with me.

I hung up the phone and cried because I miss her and I miss our friendship.

Alzheimer's has taken that away from both of us.

It has taken away the Peggy that I knew and left a pool of tears in her place.

I Love You Today, Peggy!

Mary Louise