Can't See it Anyway


You can't see it, even if you look.

It isn't like an illness that shows easily from the outside. You can tell at a glance that some people are struggling with their health: you can see their walker, the effects of chemo, their oxygen tank or even just the pallor of a person who isn't well.

What if you can't see it? When you first meet a person in the early- to mid-stages of Alzheimer's disease, you might not believe what their family says. I am sure it is true for people who suffer from depression, chronic pain or other illnesses that what they feel like inside is not reflected on the outside. At all. Does that person go through the motions of everyday life, knowing that no one can see? I imagine it must feel like being somewhat invisible. And even though most of us wouldn't want everyone to be able to see all our troubles just by glancing at us, it still must be something that makes a person feel somehow distanced from other people.

I wonder every day, what does she know? Does Mom know what is slipping? Does she realize how diminished her capacity has become? Is she, I hope, in a cognitive fog that dulls the glaring absence of who she was and what she knew and how she thought? Is she sick enough to not know how sick she is?

There are no answers.


Hello? Are You There?

In some ways, it is the cruelest of diseases.

Mom looks much like she has always looked. She has the same personality in most ways, too. Mom was always stubborn; now she can be downright petulant (especially with matters of health care). She still seems to recognize her loved ones, although if we aren't standing in front of her, she doesn't know how old we are. It's a conundrum: in her mind's eye, her sister is still as she was back in the 1950s, and yet she knows I am a grown woman and I was born in the 60s. Time is no longer a linear thing for Mom. I suspect it is also true that Mom doesn't always know us as well as she pretends, but she's a hella-good faker.

She can't attend to her personal needs anymore. She can't cook, or remember her hygiene or to take her medicine. She doesn't remember anything for more than a few minutes and even those long-ago memories are becoming jumbled: one story melds with another, making new stories. One of the most stubborn and independent people  have ever known , now Mom needs to be told to rinse the shampoo from her hair, or to flush. She repeats herself about every 15 minutes, all day, every day. All day, every day. All day, every day.

But then she will say or do something for a brief shining moment, She's MOM again. For that moment, all the decisions we've made of late are called into question. "Is she really so bad off? Does she really need to be moved to a facility? Maybe she's OK..." The moment never lasts, though. The little window closes, and we are shut out again.

We stand by, her children and her family, and watch her slowly slipping behind a great wall of confusion and watching her dignity dwindle. We're watching Alzheimer's disease take our Mom from us.

FYI

I've been in customer service a long, long time. Let me just tell you, folks, very little will shut down a CSR's desire to help you faster than using the phrase "YOU people" on us.

You may get a CSR who is enough of a professional to continue to help you, but you won't get any warm fuzzies.

"What is wrong with you people?"
"Why can't I get you people to.....(fill in the  blank)?"
"You people need to do something about this."

There is no definition of the "you people" that feels nice on the receiving end. If you are calling to complain about something, you want the CSR to be on your side: to feel empathy for what you are unhappy about, and to do their best to resolve your problem. Set yourself up in immediate opposition with a pejorative term like "you people", and you can forget empathy. Now you've put the CSR on the defensive and told them very clearly that we people are not like you people.

Not that the "you people" kind of people read my blog..... :-)


Another Legacy

I read an essay on Slate: a touching tribute to the author's influential teacher. It reminded me of some of the teachers who made a positive difference in my life.

Mr. Marr, who taught high school English and Psychology, was an important teacher in my life.
Mr. and Mrs Black, a married couple who taught in neighboring junior high classrooms, were also influential.
Mrs. Vest, my first-grade teacher was wonderful, too.

But of all the fine teachers I had during my school years, I most remember Mrs. Waas. She taught high school English in Woodland Park, Colorado and I had her classes for my freshman and sophomore years. She took a socially-awkward, skinny and decidedly unblossomed girl and said the magic words that would change a life: "This is really good."

Even though teachers all through the years had given me high marks in my language classes, even though I was a strong speller and did well with reading comprehension, etc., it was Mrs. Waas and her constant approval and encouragement that tipped the scale.

I knew I could spell. Grammar was easy. Mrs. Waas read my compositions and was the first one in my life to tell me that I really had something to say. From my short stories and poems to my book reports, she engaged a wordy girl and her thoughts. She made insightful comments, argued a point with me, helped me write with more clarity and treated my words with respect. I can not stress that last point enough: she treated my words with respect!

We may never know the impact we have on other people's lives. Some teachers may hear from a student from time to time, but they never really know. It was about 37 years ago that I sat in her class for the first time, and was changed forever. There is great power in our words, and her words of approbation, words written in red pen and often punctuated with exclamation points (Interesting! Good point! Well said!) made an awkward, unsure girl become aware of her own ability and passion.

What can you say to someone today, to uplift them in that way?

What can I? I think I will look around for something to say. For words are power.