Friday, November 5, 2004

WHILE THE BAND PLAYS ON.....

Peggy was happy this morning. Her voice had a lilt to it and she was laughing. It was as if she had a private joke that she couldn't share with me.

Even though I told her my name and that I was her sister...she had no idea who I was and that creates an empty place inside of me.

I asked her what was making her so happy today and she said that it was a good hair day.

It feels good to hear her familiar voice and it feels sad to know that she thinks that she is talking with a stranger.

Sometimes, she sounds so normal that I want to scream at her and say...Stop this act, Peggy! It's not funny!

I know that it is not an act and that she can't help what Alzheimer's has done to her mind. It is just so frustrating to hear her sound so happy when I am in such pain.

Sometimes, after a call like today, I get angry and vow that I will not call again and feel so completely shut out. I lecture myself and decide that I will not keep making these calls to Peggy.

Then, I remind myself that I am the healthy one here and need to quit feeling so sorry for myself. I just miss her so much and it hurts to my bones to realize that she does not think of me or miss me the way that I do her.

My feelings today are like the old saying "stuck between a rock and a hard place."

Why do I find myself in this place today when Peggy was so happy?

I think it is because we cannot share our happy any longer.       There is no "two way street" in our relationship. The relationship is very one-sided and I have to carry the burden of being forgotten while she laughs. It is a laughter that can no longer be shared because I have nothing to laugh about.

It is difficult for my healthy mind to comprehend that Peggy has forgotten who we were.

I am sad and angry because I have lost my sister, my forever friend.

There is not a single thing that I can do but watch her disappear a little more every day.

It feels like I am standing on the deck of The Titanic. The ship is sinking, the music is playing, all the life boats have been filled and are in the distance.

Here I stand, hanging on to Peggy and the railing of the huge ship as it continues to sink...

 Here I stand, waiting for the cold water of Alzheimer's to wash Peggy down into the sea.

Here I stand.......

While The Band Plays On......

I Love You Today, Peggy!

Mary Louise

 

 

7 comments:

stormie4851 said...

Soooooooooooooooo touching...................Stormie

thebaabee said...

Mary Louise,
I've been reading your journal and it's been breaking my heart.  I cannot imagine how much your are hurting.  I have Lupus and another auto immune disorder called Antiphisiploid Syndrome. Early onset dementia is one of the complications of this disease.  I have been noticing myself getting confused and disoriented more often lately.  I get lost and am no longer allowed to drive.  I ask the same questions over and over again.  My MRIs confirm vasculitis of my brain.  You are a wonderful sister to Peggy.  LuAnne

mosie1944 said...

Your sister is so blessed to have you to watch her disappear, though.  Think of the hundreds who have to disappear with everyone turning away.  God bless you.  http://journals.aol.com/mosie1944/MYCOUNTRYLIFE

sarajanesmiles said...

My beloved Grandfather lived with Alzheimers for a number of years.  I know how frustrating it can be.  Though to feel you have lost your sister must be such a sad thing to deal with.  I am so sorry.  It sounds like you were very close, hold onto those memories and know that she would never have forgotten you, given the choice.
Sara   x

wendy4145 said...

the waiting is the hardest part.  you have explained your anger, sadness and frustration very well.  this cruel disease may take your sister, BUT IT CAN'T KEEEP HER!  She will be free of her disease some day.  You two will meet again on a different sad day.  in saddness there is rejoicing.  In anger their his healing.  In bad things we can find good.  in pain we can find a path that brings us to a better place with ourselves.

you are not alone Mary Louise.
But you are such a sweet sister!  You are strong to keep calling your sister.  You keep on calling her.  If she could know it was you on the phone she's be laughing with more glea than she was that day.  If her brain would let her, she'd be calling YOu to share laughter.  You two will laugh together agian.
Love,
Wendy

boofanna said...

I have worked in a nursing home for three years.  I have seen what living with Alzheimer's can do to a person, and what it can do to their family.  It is a terrible disease, one that takes a person's mind but not their body.  After reading what you have written, I can tell you that I have seen patients with Alzheimer's have visits or phone calls with their family, and not remember who they are; but not long after they have left or hung up they start talking about them.
There was a woman that I took care of.  She had severe Alzheimers to the point where she was dependent of ALL her care.  a co-worker and I would show her pictures of her family and she would tell us all about them.  Sometimes they need something to trigger a memory from their past.  I know how you are feeling, and it must be good therapy for you to write about it...

Beth

wobblymoo said...

Thanks for sharing xx