Friday, March 25, 2005


(LOST:  adj. ruined; destroyed; not to be found; missing; no longer held, seen or heard, having wandered astray; wasted).

Peggy is not the only one who is lost in this journey called Alzheimer's disease.

Our whole family feels lost.

We are all lost as we try to find our way through the darkness of this disease.

I had Encephalitis once. It is an inflammation of the brain usually caused by the bite of a flea or mosquito. I was lost for almost a year and fought my way back from that brain virus. I fought my way back because I knew that... I was lost.

I remember a day, several months after I returned home from the hospital.  I took chicken breasts out of the refrigerator to fix for my family. It was a task that I had done many times. I laid the chicken on a plate and I couldn't remember what to do with it. I just stared at it and tried to remember what to do. I was lost and afraid because I knew that I couldn't remember how to prepare the chicken.

Another incident happened when I drove to a familiar shopping center. After I had finished shopping and returned to my car, I  couldn't remember how to get home. It was another frightening experience and another time when I felt completely lost.

The difference in my lost and Peggy's lost is that I Knew that I was lost...Peggy doesn't remember...Lost!

Some of my memories were lost forever because of Encephalitis but that is OK because I don't worry about a memory that I can't recall.

That is a comfort because I understand that Peggy doesn't worry about her lost memory. She can't worry about memories that are no longer in her brain.

To this day, I have never forgotten what it felt like to be lost and to know that I was lost. 

I think that lost is a lonely word. It is a lonely word that loses it's meaning to an Alzheimer's patient but is huge  word to the ones who are still try to find... the Peggy that we knew.

Peggy is and will continue to be lost but she has forgotten to be afraid like I was when I had Encephalitis.

We are the ones who are frightened as we watch Peggy disappear because ...

We Remember.... while she has forgotten.

If you ever find yourself in a place where you are lost and you know that you are lost...

Be thankful....

Because you can find your way back home if you remember.

Peggy is lost, really lost and she doesn't remember that she is lost. She has no way of finding her way back home. She has no way to ask for help or directions. She has no way to be O K again because she has forgotten. She is lost and has forgotten to remember what lost means. 

When we experience a situation that turns our world upside down it can make us afraid and we can feel lost.

No matter what we face or how lost we feel, if we are aware that we are lost, we can ask for help and find our way through the darkness of any situation.

Alzheimer's disease has taken that privilege away from Peggy. She is lost but doesn't know it and she has no way to ask for help to find her way back home.

To remember is to know that help is always there.

We just have to ask for help and the darkness in our lives can turn into light.

We are empowered because.... We remember.

Peggy's power has been taken away because she cannot remember.

She cannot remember that she is lost.

But we remember and we all keep trying to find her every day.

It is good to remember what it feels like to be lost and to know that feeling temporarily lost does not mean that we can never find our way home.

We can find our way home again if....... We can Remember.

I Love You Today, Peggy!

Mary Louise


sanforized6 said...

You just have a beautiful way of telling your story! You've brought more tears to my eyes, in the few months I've been reading you, than I've had in years. This is good! It proves how well you convey your feelings. rich

barbpinion said...

You've helped so many people by creating this journal. This entry is especially touching.  I do keep all of your family in prayer. Take care, dear one. *Barb*

wendy4145 said...

Mary Louise,

   I didn't know that you had cephelitis.  You recovered well.


terra19728 said...

My sister is my closest friend, I have cherished her since the day she was born.  I know what is sister means.  Next time I am lost I promise I will not take it for granted.  Thank you for showing me another way of thinking.


domesticatedchic said...

What a heartfelt entry.. you really got those words out well.. thanks for sharing this with me. My illness makes it so that I'm very forgetful.. the other day I sat there staring at the keys on my keyboard and forgot what my password was and that scared me.. I guess next time.. I wont be scared because I know that I'll eventually remember.. if I just take a deep breath and relax.. Sorry to hear you had encephalitis.. that must have been a scary time.. :) Mel

ceschorr said...

i love peggy too. and you ... i read often as you write, never comment...  kids.... ms.... dog.... life... a little lost...  sometimes i put the milk in the closet....(ms?, lol) i'm not trying to be a smart-butt...   i understand about the whole family feeling lost.  maybe in a different way...  but somehow  i "feel" what you are saying...
Happy Easter, Christ is Risen:) thank you Lord, for your forgiveness of all our sins, before we even were born, yet You knew already who we were and what we would do...  (sorry, don't know if you are Christian or not.. . however this is how i feel)... Do you ever ask Peggy if she still knows who Jesus is? I don't mean to pry or ask painful questions... just am curious...
also,  if you should get a comment by a character by the screen name.. danceswithducks, not to worry... he has BEEN THERE... he is my dad... been there with both of his own parents. and frightened of it on himself... and it will come. i see it already. perhaps because i'm a nurse,...? i don't know... but... I did give him your link.. b/c he asks me a lot of questions, and insists that i "do something about it" should that happen to him...  sure dad... of course... he is only frightened. i don't know how old peggy was when this began, but my dad is 56,... the rest of the family is gone now, but they were already 'gone' by the time they were 65. i think he is terrified...
i also don't know if you are a reader of my journal or not...
it is:
unfortuanatly , i am having to make it private... d/t some "caring family members..." who stepped over their bounds, and did something unneccesary... that caused undue stress and truama in my  families life....
so if you are one of my readers and want to keep reading please send me an email.
much love and many many blessings,

lindainspokane said...

I want to wish a very Happy Easter to you and your family...much love to you all...


cyndygee said...

You are both brave and wise, Mary Louise.  For writing down your feelings and getting them OUT and for remembering life with your sister . . . before.

I volunteered for the Alzheimer's Association for several years.  I facilitated a support group for two years.  That time was both fulfilling and draining.  So often, I felt frustrated for not having ALL the answers but I remembered something that I'd been taught many years ago:  


That truth served me well in leading a support group.

May silence and patience be your companions through the journey ahead.