Friday, May 9, 2008

Writing about life with Alzheimer's

Mom is keeping what she calls a journal of her symptoms. She's writing about what it feels like to have Alzheimer's. I'm glad she's still writing and reading, even though both are hard for her.

She struggles with spelling and also, as she wrote in the diary, with the "nooances" of what she reads. That's the amazing paradox of this disease--that she can still understand the idea of nuances, even though she's losing the capacity to capture them and to spell the word.

When I was with her the other night and she was emailing a friend, she asked me how to spell "Lois," "once" and "couldn't." This from woman who has written (and published) books. She knows when she has spelled something wrong, but she doesn't know how to fix it. It gets very frustrating for her, but we both try not to dwell on the surreal quality and sadness of what can't be healed.

We went out to dinner the other night she told me that the last thing a person says before a pause in discussion echoes over and over in her mind. I told her that I'd better make sure the last thing I say to her is always something nice, like "Mom, you look so thin!" or "Mom, I love you."

Alzheimer's manifests differently in different people. "Forgetting" isn't just about forgetting events; it can involve forgetting how to function, how to achieve operational tasks, like how to spell a word or how to--as happened to Mom the other day--open a car door. These things are like burps in cognition, things that are almost indetectable for people who aren't looking closely or who don't know her very well.

Mom lives in an assisted living community where every day she is involved in numerous activities, such as walking, excercise classes, outings, movies, communal meals. She loves to laugh. She enjoys being with her daughters, grandkids, other family and friends. She likes to keep an eagle eye out for problems at the place where she lives; she keeps a list that she shares at the resident's council meeting. Before this, I'd thought of Alzheimer's Disease as a death sentence. It's not, really. People can still have a good quality of life even as their brains change. Many people are living with Alzheimer's Disease, not just dying from it. That is the "last stage"--but there's a lot of life to live before that happens.

The fact is, Mom is a very bright, educated person. She can "cover" or "cope" very well--and so what I see when I'm with her, I know, is just a little bit of what it feels like to be inside her mind. That's why I'm glad she's getting it all down, as best as she can, in the journal. She told me I can do whatever I like with her journal. She likes the idea of my sharing the story from both of our perspectives. She has always been a supporter of my writing. And I of hers.


Collin Kelley said...

A great post about your mom, Kate. She sounds like such a sweetheart.

Jo A. T.B. said...

Hi Kate,

Isn't it wonderful how mothers and daughters share so much. So sad to watch them in their illnesses, and not be able to cure them. You show the devasting affects of the disease, and yet there is hope that they can still lead a productive life with the help of loved ones and caregivers. Enjoy mom while you still have her, I sure miss mine every single day! cherrio :)

Becky C. said...

Yesterday I had one of those silly mental blocks--I could not remember the name of the guy who invaded Rome with the herd of elephants (Hannibal). I was on a long drive in the car so could not run up and get the answswer on Google. It drove me freakin' nuts--so much so that I finally called up some people to get the answer. Thje two people I called did not know--but were certain that I was off my rocker.

It was such a relief when I could finally get to a computer and get the answer.

I can not imagine the frustration that a person, like your Mom, must go through. I really don't know how I would cope. If yesterday's episode is any indication--I would have to be put on Xanax or something.

I know life is not fair--but some things seem so unfair.


Kate Evans said...

Thanks, Collin. My mom is very dear--and also a pistol

Jo: Thanks for the sweet & important reminder to appreciate my mom while she's still here.

Becky: I think my mom's enjoying her red wine in lieu of Xanax!

Dustin Brookshire said...

Kate, Thank you for sharing about your mother in such detail. I teared up while reading your post-- while there is the sadness of this difficulty, there is such beauty in how the two of you work to handle it.