I LOST ME

There was an article about Alzheimer's disease in our Monday paper.

The title was...'I have lost myself'

When I first started writing this journal about Peggy, she made this statement to me, I lost me!

NOVEMBER 4th 2003

Peggy said something today that gave me chills and made me cry. I asked her how she was doing and she answered in a loud, scared voice.

She said... M. L......I lost Me!

I asked her how she was and if she was going anywhere today ( her sitter takes her out every afternoon).

She said, I don't know...I don't know and sounded so scared.

I assured her that it was O K and not to worry.

She said, all the babies were there and so was Barbara ( sister who lives in Atlanta ).

Barbara is not there and I knew it.

I  told her that I loved her today and she said, I know and I love you too.

Then, she said, I can't go anywhere.

 I said why Not, Peggy?

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

The Long Goodbye to my Sister, my Friend continues every day!

ML

That entry was made in 2003 after Peggy had been losing her "self" for quite sometime. She was still able to communicate and let me know how she was doing.

Now, she is really lost.

Peggy is lost forever and as hard as I try........

I cannot find her!

The reason that I cannot find my sister was discovered by Alois Alzheimer 100 years ago this November.

Article by David Shenk. The author of The Forgetting: Alzheimer's, Portrait of an Epidemic 

( abridged by Mary Louise Ross Harris)

Alois Alzheimer was a 42 year old German psychiatrist and neuropathologist.

He shocked his colleagues with his description of one woman's autopsied brain.

The woman was named Aguste Deter. Five years earlier, her husband had admitted her to Alzheimer's psychiatric hospital in Frankfort, Germany with  disturbing set of symptoms: memory trouble, aphasia ( loss of the ability to use words), confusion, bursts of anger and paranoia.

When she died in April of 1906 at the age of 55, Alzheimer was able to look inside her brain.

Ernest Leitz and Carl Zeiss had just invented the first distortion free microscopes.

Franz Nissl had revolutionized tissue-staining, making various cell constituents stand out, opening up what was characterized as "a new era" of the study ofbrain cells and tissues using various colored stains.

Alzheimer studied the frozen tissues of Aguste Deter's brain at a magnification of several hundred times and he finally saw the disease.

It looked like measles or chicken pox of the brain. The cortex was speckled with crusty brown clumps ( we now call them plaques) too many to count. They varied in size, shape and texture and seemed to be a hodgepodge of granules and short, crooked threads, as if they were sticky magnets for microscopic trash.

The plaques were nestled between the neurons, blocking their communication with one another. Alzheimer could see them with any stain at all but they showed up best in a blend of magenta red, indigo carmine and picric acid. 

A different stain revealed what Alzheimer called, " a tangled bundle of fibrils" ( weedy, menacing strands of rope bundled densely together). These tangles grew inside the nerve cells, strangling them together.

Alois Alzheimer had discovered that Aguste Deter had not lost herself.

Rather, her "self" was taken from her.

Thank You...Alois Alzheimer!

Peggy's brain is the description of Aguste Deter's brain.

Peggy told me years ago that she was losing herself and the way that she talked to me, I knew that in some way, she felt responsible for her condition. She tried so many things to get her function back.

She was ashamed and embarrassed that her memory was failing and that she would get lost driving.

Oh Peggy! I wish that you could understand me today!

It was not your fault! You did not lose yourself!

Your "self" was taken from you.

You are too far advanced to remember who you were but Peggy....

I remember you...just like you were before Alzheimer's disease took your mind from you.

I made a promise to you before you completely forgot your life and I am keeping that promise.

I am writing about what this disease has done to us, to your family and to everyone who knew the Peggy Jane that we knew.

Your brain was taken from you but the "you" that is in our hearts will always be....

Peggy.

I Love You Today, Peggy!

Mary Louise

 

MEMORIES...THE GOOD, THE BAD, THE UGLY

I think that memory has three parts...........

The Good, The Bad, The Ugly.

Peggy's memory has been erased and she doesn't have to deal with the three phases any longer. Or does she? 

What happened yesterday or an hour ago is gone from her brain, or is it?

Does she have to deal with the good, the bad or the ugly of her memory?

If she does, how does she cope with the flood of thoughts that can sometimes be frightening?

Personally, I like to remember all the good things that are stored in my memory. I would just as well have the bad and ugly erased.

But the truth is that we learn so much more from the bad and the ugly.

Have you ever thought about how memory works in our minds?

We RECALL good memories and this takes thought as we pull the good memories to the front of our mind. The bad and ugly memories just pop into our minds at any time....uninvited.

Every time I get on an airplane to fly, a bad memory floods my mind, no matter how hard I try to forget that near crash. The memory is burned into my mind and only comes out to haunt when I arrive at an airport. I don't have to try and recall it...it is just there...uninvited.

I know that Peggy's good memories have been erased but do the bad and ugly memories still come into her mind uninvited?

I have also wondered if she dreams at night. Does she have bad dreams occasionally like everyone else or are they gone as well?

I have so many unanswered questions about what Alzheimer's disease does to the brain.

I hope that the bad and ugly memories in Peggy's mind have been erased along with the good ones.

I hope that just like a new born baby...her memory and mind is clear except for the love, care and food that she needs at the moment.

I hope this is true because how could she understand the sudden, re -lived fear that accompanies a bad memory?

When I relive a bad or ugly memory, I can reassure myself that it is over and not real in my today world.

What about Peggy? Does she still have bad and ugly memories that visit her.....

Uninvited??

I Love You Today, Peggy and wish only good thoughts when you have flashes of memory.

I pray that only good memories are present in your mind on the ocassional days that you do remember.

I pray the the bad and ugly memories have been erased never to come and visit you...

Uninvited.

Mary Louise

MESS WITH MY SISTER...MESS WITH ME!

I have learned that you cannot watch someone you love disappear before your eyes and not be affected on a very personal level.

When I forget a name or can't recall something quickly....I am concerned.

I have learned that you cannot remove yourself from the fear of  getting Alzheimer's disease or Picks disease but have to find ways to live with the possibility.

I have learned to live with this fear can be debilitating in living your life...if you let it.

My Doctor and good friend has told me that there is a test that I can take to know my possibilities concerning the diseases. He also said that if the test came back positive that it was no guarantee that I would develop the diseases.

I gave having the test long  and serious thought and have decided not to have the test.

I thought...What would I do different if I consented to the test and they came back positive?

My answer was... nothing.  Many areas of my life have had considerable growth since I started watching Peggy disappear.  I have learned to slow down and live in the minute, the hour and the day.

I don't worry about what people think of me like I used to.  I don't worry if everyone doesn't like me like I used to.

Now, I am comfortable with knowing that everyone will not like me or approve of who I am and what I do and that is all right.

I have learned because of Peggy journey, that each day is truly a gift.

I have learned that there are no guarantees in life no matter how hard you try.

No guarantee that our health will always be good and that life will always play fair. It is not a scary possibility to me but a simple reality. A reality that reminds me to live today... to not let yesterday and tomorrow rule who I am today.

Life and health have not been fair to Peggy but because of her struggles...

I have learned how to live.

Because of her struggles, I have learned to live every day and every minute.

I know in my heart that if I ever start to disappear...

I have a husband, children, a brother and two other sister's who will walk the path with me even if I  forget who they were in my life.

NO ONE KNOWS BETTER THAN A SISTER....

HOW WE GREW UP.

NO ONE KNOWS BETTER THAN A SISTER WHO OUR CHILDHOOD FRIENDS WERE.

NO ONE KNOWS BETTER THAN A SISTER WHAT OUR FAVORITEGAMES WERE.

NO ONE KNOWS BETTER THAT A SISTER WHO OUR FIRST LOVES WERE.

NO ONE KNOWS BETTER THAN A SISTER WHAT OUR  FIRST HURTS WERE.

NO ONE KNOWS BETTER THAN A SISTER....OUR LIFE HISTORY AND LIFE PRESENT.

NO ONE KNOWS BETTER THAN A SISTER.....

THAT I WILL NEED THEM IF I EVER START TO DISAPPEAR!

Peggy is our baby sister and we will continue to be there for her even though we are all miles apart.

We are there for Peggy in love as we were when we grew up together. 

Our motto was then and is now...

MESS WITH MY SISTER...MESS WITH ME!

I Love You Today, Peggy!

Mary Louise

 

 

FROM THIS SIDE OF ALZHEIMER'S DISEASE

CAN YOU MEASURE THE WORTH OF A SUNBEAM,

THE WORTH OF A TREASURED SMILE,

THE VALUE OF LOVE AND OF GIVING,

THE THINGS THAT MAKE LIFE WORTHWHILE?

( Anna Garnett Schultz)

I received a mail recently that suggested that I didn't understand what it was like to be a full time care giver. The mail also said that my journal was only about my feelings and hasn't helped anyone at all, especially my sister.

I will agree that I am not a full time care giver.

I will also agree that my words are about my feelings as I watch Peggy disappear.

I must also agree that writing this journal has done nothing to help Peggy.

My writing is totally selfish, I understand that very well.

But I do hope that by keeping this journal, I have put a light on what it feels like to watch someone you love disappear. A light on  the devastation of losing someone you love who is still living and breathing.

 A small light on what it feels like from this side of the disease.

Not as a full time care giver, which would be a difficult task but as........

A sister, who loves her sister and continues to struggle with a mountain of feelings as I try to let her go with all the dignity and strength that I possess.

I am amazed by the courage and tireless efforts of full time care givers who work every day, giving care to loved ones who are dying from many diseases and not just Alzheimer's disease.

I am Peggy's sister and I love her and I will continue to write about my struggle and my feelings as I continue to....

Watch Her...Disappear!

I Love You Today, Peggy!

I know that you love me and are proud of me and that is all that really matters!

Mary Louise

VOTE TODAY.........

WE HAVE A DUTY TO PERFORM TODAY....

WE VOTE AS A FREE NATION....

VOTE TODAY BECAUSE THERE ARE SO MANY PEOPLE WHO CANNOT GO TO THE POLLS AND VOTE...

 BECAUSE

THEY HAVE FORGOTTEN ........

I Love You Today, Peggy!

Mary Louise