Saturday, November 11, 2006

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

14 comments:

patlegion said...

There are those of us who understand your pain very well, I had to watch my mother Ann die of breast cancer after living with it for over 7 years and then my dad Edward suddenly died and her cancer came back with a vengence.
The doctore said it must have been the shock of her husband of 66 years dying so suddenly.  She died exactly 3 months to the days of my dad.
We watched as she wound down her life day by day, it is so heartbreaking watching someone you love so much slip away.

Even more so with your  sister as she is so young.  Keep loving her as much as you can and God will see you through with your family and friends giving you support with my prayers as well.

Patricia

candespinn said...

MaryLouise, I can tell you that "Watching My Sister Disappear" has and always does give me inspiration as I travel my journey with Dad.  Your words, thoughts and deepest sentiments have given me great hope and comfort in times when I felt my world was crumbling down around me.  I will pray for the person who found it necessary to tell you all you ARE NOT, they are indeed in great pain.  I will continue to pray for you and Peggy, for all that you ARE,  as you both have given me more than you could ever know. ~

wendy4145 said...

sometimes being selfish is a great thing to do.  but in your journal for your SELF... you share your wonderful ways of dealing with a very difficult and painful process.  Others are helping Peggy (when you can't be there)  and You are helping many with your Journal (who are going through trials of their own)  Helping eachother does help the world go around.

I don't think you are selfish at all.
love.
Wendy

astaryth said...

What a RUDE person! Ignore them!!! So what if your Journal is about your feelings... It's YOUR Journal. Besides, I'm sure that there are many out there that have the same feelings and it always helps to know that you are not alone. I personally find great inspiration here, not because I have anyone who is ill, but because it reminds me to live and enjoy the little things everyday because the time may come when I won't be able to enjoy them.
http://journals.aol.com/astaryth/AdventuresofanEclecticMind
http://adventuresofaneclecticmind.blogspot.com/

pharmolo said...

That person was very insensitive themselves. Your journal (indeed: YOUR journal) is to reflect the pain you feel as you watch the inexorable decline of your sister. She is your sister. That's about as close as you can get.
Also, your journal will also help those in a similar position (a previous commentator mentioned as much), if only to indicate that they are not alone. You help more than you'll ever know, Mary Louise.
Carry right on. Ignore the stupid.

lsfp1960 said...

I think who ever did that was very rude and insensitive.  Does it matter if you're a caregiver or not.....you're Peggy's sister and you love her.   It would be very unusual for a caregiver to write like you write.  There would not be that same connection between a caregiver and Peggy as you have with her.   And even tho it may not help Peggy at this point, I know someone is being blessed by what you do write.  Keep up the good writing, I hope I never have to go thru this with one of my loved ones, but if I do there are parts of your journal that will inspire and encourage me.  Linda in Washington  

magogos said...

i'm sorry someone who doesn't get that there are many sides of losing a loved one to alzeimers. and why on earth would s/he reach out to hurt you? i'm grateful for your writing, your sharing of your feelings and experiences, for i have learned a lot from you. thanks, margo

neelymel0805 said...

I am shocked that someone would say these things to you!  A journal is to write the feelings and thoughts of the person who is writing the journal.  I have three sisters myself and can not imagine the pain it would cause to loose one of them to illness.  It would be especially hard to have one go through Alzheimer's.  I think you write with the love and compassion that one feels for the people important in their live.  I truly admire your ability to express to your "pain" and your "love" for your sister!  You are a very special human being.  God Bless You, Mary Louise.

pattboy92 said...

I'm amazed that anyone would dare say such things to you.  If there was a way that you COULD help Peggy, it's clear from every post you've ever written that you would have done so long ago.

You HAVE helped others by sharing your very personal story, raising awareness about the disease.  And you've helped yourself by getting your words out.

How dare anyone attempt to judge you because they think you haven't done enough.  What, I wonder, have THEY done?

I don't comment nearly as often as I should, Mary Louise, but I do check in often, and I am always moved by the pain you feel and the joy you share in your memories with your sister.  

You remind us all that our lives are made up of incredible moments that we should always take time to cherish because there's never a guarantee that we will always have them.  You also remind us that we should take time to tell our loved ones how we feel about them while we have that chance.  And most of all, you remind us that it's perfectly okay to be human.

I don't know what more you could do, other than to ignore that email:  its writer clearly just doesn't get it.

Patrick
http://patricks-place.blogspot.com

mgmturner said...

Mary Louise,

I can't begin to tell you how much I have learned since I began reading your journal.  I fear that someday I might be going through this with a family member or close friend and what I have learned will be helpful.

I just want to say thank you for being so willing to share your deepest wounds with us.  There is nothing selfish about it - I personally see it as an act of caring and thoughtfulness.

Hugs,
Gwynn

inquestoftruth said...

Of course, I don't know the specifics of the mail you received about your journal...but it makes me mad just the same.    I'll never understand why someone would proceed to make such a comment about another's heartfelt words.   I've visited your journal many times, (though not recently) and have breathed prayer for you....  All I can say is please don't let such insensitive comments (whether intended to be rude or not) discourage you from writing.   You are gifted...and special.    
Thanks for visiting my place....come visit anytime.
~Meg

grofsand said...

Whether it be a smile or just the sound of a footstep signaling "I am here", There is no act of kindness that is too small that it cannot be noticed by the soul.

  The Angels could not have found a better soul than you to be the escort to your sister. As you accompany her through this final corrdidor of her life, you know, she did not take one step in it, being alone!  

         Such acts of love transcend worthiness!

Measure not your efforts by what you see, but measure them by
  what you can touch!       Peace~~Marc :)

mcsgrl37 said...

 MARY LOUISE, WHOMEVER THIS HEARTLESS PERSON MIGHT BE, GOD HELP HIM/HER, BECAUSE THEY DON'T KNOW WHAT LIES AHEAD OF THEM.
 MY MOM HAS ALZHEIMERS, AND SHE IS IN HER OWN LITTLE WORLD. SHE KNOWS NO-ONE WHO GOES TO SEE HER NOW. EVERYTHING HAS TO BE DONE FOR HER. SHE HASN'T WALKED IN OVER A YEAR.
 WHEN I GO TO SEE HER, IT IS SO HARD. I LOOK AT THIS PRECIOUS LADY, AND I WONDER WHERE MY MOM WENT. I KNOW SOMEDAY SHE WILL BE WITH THE LORD, BUT RIGHT NOW, I HAVE TO WONDER. MY MOM WAS SO FULL OF LAUGHTER. ALWAYS HAD A FRIENDLY WORD FOR EVERYONE. I'LL NEVER FORGET ONE DAY THE CABLE GUY CAME TO FIX OUR CABLE, AND IN MOM'S CONDITION, I THINK SHE THOUGHT IT WAS MY BROTHER. THIS GUY WAS STANDING CLOSE TO HER TALKING TO MY HUSBAND. MOM REACHED OUT AND TOOK HIS HAND, AND WOULDN'T LET GO. MY HUSBAND FINALLY DID RESCUE THE POOR MAN. HE WAS SUPPOSED TO COME BACK LATER, BUT HE NEVER SHOWED UP.
 SO MANY PEOPLE JUST DON'T REALIZE HOW DESTRUCTIVE THIS DISEASE IS.
IF ONLY THEY COULD REALIZE THAT YOUR WRITINGS ARE THE ONLY OUTLET YOU HAVE, AND I TRULY BELIEVE IT HAS HELPED A LOT OF PEOPLE WHO ARE JUST BEGINNING TO GO THROUGH IT WITH A LOVED ONE OF THEIR OWN
PLEASE KEEP WRITING. IT IS BEAUTIFUL.  MARY  

sugerb6 said...

Mary Louise I am so sorry someone hurt you with their uncaring words. I come from a large family, we lost our mom suddenly 8 years ago. I had talked to my mom on the phone and told her I loved her before hanging up, it was my last words to her, 3 hours later she was gone. I have two brothers who live several hours away and all I could think about is what a long lonely ride home they had and I cried. When my lil sis was told of her cancer, my sister and I became her caregivers. I had lost my job of 27 years due to a plant closing 2 years prior, my daughter said to me, "Mom consider it a blessing that you lost your job, it gives you time to spend with your sister" and I was truly blessed. To see the tears of my 6 brothers as they hugged me and thanked me for taking care of her throught  her journey was heartwrenching. My sister and I could be with her, my brothers could not, and I could see and feel the pain in their eyes and hearts as they cried. You love your sister with all your heart and as I read your entries I cry with you for I know what it is to lose the ones we love.
Debbie