Saturday, May 9, 2009

For Mother's Day: Mom's Alzheimer's Journey #3

Last Mother's Day, I wrote an entry about my mom, highlighting her as a writer and a nurse. Re-reading it, it shocks me a little because it reminds me how much has changed since her Alzheimer's diagnosis.

When Mom was diagnosed, she started keeping a journal. Her wish is that I share this journal so that others can see how this disease affects people. She also wants me to write about it from my perspective, which I've been doing in a memoir that chronicles the illnesses of both my parents, and the impact on our family.

So, this is one of my Mother's Day gifts to Mom, continuing the series. (The other gift will be spending the day with her and a bunch of other family.)

Even though she can no longer do much reading and writing, her influence shines through me. Still, the journal can be very emotionally wrenching, especially this entry I share below. In the journal, it's evident she still has her sense of humor. For instance, she often addresses me, challenging me to decipher her spelling and handwriting. And though she also displays a pragmatic attitude toward death, it's painful to realize she has so much awareness of all she's undergoing.

She and I have talked about much of what's in this entry. She worries about us, her daughters, and how we are suffering. I tell her we are taking each day as it comes, enjoying being together. Besides, this is the way of things, isn't it? Parents take care of you, then you take care of them. She certainly did that for her own parents. I'm afraid I'm not as stoic about the whole thing as she is, but I try to be the best daughter I can be without jeopardizing my own health. Not always an easy balance to strike, but if anyone understands that, she does--the woman who took care of my ill father for more than 20 years.

At these links are the first two entries from her journal:
Mom's Alzheimer's Journey #1
Mom's Alzheimer's Journey #2

And now here's the third. (Note: I've kept the spellings and grammar the way Mom wrote them so that readers can have a sense of her abilities but have included needed corrections and more information in brackets when necessary for clarity)

[January-February 2008]

I lost my way coming back to my room today -- but maybe that was a fluke.

What's short--I wonder because because I read on the interenet that the average age of life after an AD diagnosis is 7 1/2 years. I also read on the internet that there's a 'short' & a 'long' AD. How log is log [long]? How short is short? Supposedly, the long variety is slow growing--pople [people] get the symptoms slowly over a period of time. I feell I have the rapidly the fast-growing variety. My symptoms seems to be coming on rapidly. So my question is still watch [what] is rapid & wot is slow? I'll ask the neurologist.

[Friends who were visiting] help me too much. I can understand that. They tried to help me across the street, as if I couldnt recognize the signifal [signal] lights. I tend to walk closer to the sidewalk and they wouldn't let me! As I said I can understand that. Theveve never dealt with someone with AZ, but neither have I.

I have more & more memory loss. I can't remember names and when I speak I can't remeber things--like words of things. One time, I remember not regnoising [recognizing] a place--it was if a blank wall were staring at me.

In the book I'm reading by an AZ patient, typing is not a problem for her, it is for me! Kathleen gave me the book--there are easy words in this book, so I can read it. She gave speeches til toward the end of her life. There are also short breaks in the book--places where one is able to stop, not the disese. I read about a treatment that slows down the disease for some people. It's an injection in the spine. I'm not looking for things to slow the disease, I'm look[ing] for things to speed it up! (Good luck, Kahtleen, in decifering this!)

I've lost Annie's present. It makes me very sad to realize this, not just because I lost it but I liked it and I have lost my glases. I can barely function without them.

I found them. They were in my apartment, under where the bed meets the mattress. A caregiver helped me find them.

[Note: An early symptom of my mom's disease, for at least a year before she was diagnosed, I can now see in retrospect: She had a very hard time organizing things, and she often lost things. I would help her clean up her desk, and then the next day it would be a mess again.]

I've been having a lot of trouble sleeping at night.

I've been having a lot of pain in my rt side. I think it is muscle pain. It is localized under the rt rib cage. I'm not sure it is a muscle pain. I hope it is something more serious, something that would take me quicker.

I blurt out things I don't mean regalerily [regularly]. I've been the laughing stock on many occasions. It bothers me some, but there is nothing I can do about it.

The preident [president] of the residents council is someone I can relate to ... her husband died of AZ. I'll try talking with her ...

I lose my way a lot. I lost my way coming back from my walk today (again). I couldn't even find my room. I've been losing my way other places too. Thank goodness I still remember--almost everything.

I've always been geographically challenged, but this is different.

I don't feel bad about my condition. "Why not me," as my husband would say, but when I think of all my daughters, I feel sad when I think of all they've been through & have yet to go through.


Lisa Romeo said...

I was moved by this. My father's Alzheimer's progressed very rapidly (at least from the time we all finally realized what was realy going on) and living far away, I was only there to observic it in spurts; fortunately one time I visited was near the end.

I so wish someone had thought to give him a diary or journal and assistance/time/encouragement to write, as we wrote a lot earlier in his life.

You are a blessing to you mother, Kate. Happy mother's day to you both. You are a "mother" to her now.

Joanna@BooneDocksWilcox said...

Ahhhh, my dear Aunt Arlene

Please give her a big hug for me and tell her I love her.

Bloomin'Chick Jo said...

Hi Kate, Jo from CoL~
I am so sorry your Mother, you and the rest of your family are going through this. Sharing this is an incredibly eye-opening gift for the rest of us and I commend you for doing so as I know it is difficult to share things which hurt & change you so much. I hope Mother's Day is a happy one.

Unknown said...

Kate, I just can't imagine the emotional and physical toll this disease takes on you, your mother, and your family. It is a fact that no one wishes for this disease but sometimes there is just no way to stop it. Once it inflicts one of the dear members of our family all we can do is to provide the best Alzheimer's care we can offer. Kate, despite what you're going through, just stay strong. You're such a wonderful daughter for staying beside your mom in such a difficult time like this.

Lisa Nanette Allender said...

Hi Kate, You two have me crying here again. Again, the incredible richness of language which your mom STILL HAS, is evident when she relates how she's "always been geographically challenged, but this is different."
And yet--"How log is log?" means "How long is long?"
I swear, Kate, there's an actual stage-play in here. I can feel this coming to life, right before my eyes. Give your Mom an extra big hug from Lisa, your ATL pal, okay?