September is World Alzheimer’s Month.

Worldwide, dementia affects 35 million people and their families.  

Recently, my niece wrote a detailed post regarding her perspective of Alzheimer’s and The Alzheimer’s Prevention registry, ”… a com­mu­nity of peo­ple inter­ested in mak­ing an impact on Alzheimer’s research to help stop the dis­ease,” which is another wonderful resource.

Here’s my story of my mom and our struggle with dementia. 

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“Hey Mom, how are y… “

Oh, I almost forgot, I don’t ask that anymore. It only prompts you to consider how you are.

“What’re ya doin’ Mom?”

That question is more concrete. You answer it with greater ease since it doesn’t push the play button of obsession.

“I just sat down in my favorite chair. I just love this chair.”

“I know you do Mom. You’ve had that chair a long time.”

“You would’ve missed me if you had called a minute sooner.”

“Why, where were you?”

“I went outside for … to, oh … darn it! I took out th … oh!”

“Trash?”

“Yeah, I think it was the trash. I don’t know, my brain doesn’t work, and my left side is numb, I think I had a small stroke …”

“I know Mom, you tell me that all the time. What’re ya watching?”

“Um, I don’t know, some show. And I’m just sitting in my favorite chair. I love this chair”

“I know Mom.

Pause.

Over the last year, The Pause has moved closer to the beginning of our conversations as her world, defined by what she’s able to recall, shrinks.

“Well, I just wanted to see what you were up to.”

“Well, good. I always love to hear from you. I’m glad you called”

“Love to hear you too, Mom. I’ll talk with you soon.”

It’s the one minute call.

She can no longer process a conversation because she can’t remember what to say. So she says “Okay, I’m glad you called.”

Alzheimer’s sucks, doesn’t it Mom?

But you don’t call it that. To you it’s, “I believe that I had a small stroke and this numbness all up and down my left side is just driving me crazy and I think that it made my mind not work right.” Long name.

No, it’s Alzheimer’s. And, I wish I still didn’t know how to spell that. But now I do.

And it sucks alright. It sucks out the ability to remember why you’re going someplace, or where. It sucks the ability to not get lost when you walk out the door to go to your daily exercise class. It sucks away any opportunity for you to think differently about something, like numbness, because it’s just as soon forgotten. It sucks out the memory of what you just shared, what you’ve done in your life, where you’ve traveled.

It sucks out the ability to remember who’s in the pictures on your walls.

Hey, it’s not Cancer!

I had no idea the challenges when others talked about Alzheimer’s. When they shared their struggles I’d think, “So the memory’s going. What’s so tough about that? It’s not like it’s cancer!”

No, it’s not cancer. But because it affects mood, emotion, reaction, and, in turn, behavior there’s an unpredictability about it that causes the caregiver to question whether you’re handling it correctly. Constantly wondering what to do or how to handle specific situations. Do you lie? Do you not mention something? Do you take her out to dinner, or to a movie, or to a family event?

We want to do what’s right. I want to tell her how to handle a specific situation like how her side is numb and it’s not going to get any better. I handle it by trying to teach, trying to help.

But it’s irrelevant because the capacity to remember is gone. Lessons shared are just as soon forgotten.

Hey, I have training in dealing with difficult populations. With behavior issues. I’ve worked with developmentally disabled people and schizophrenics and potential murderers who’ve been 5150’d.

I thought I had it. That I got this thing.

But, I just happened to miss one minor detail.

I’ve never dealt with my Mom and this debilitating disease that’s destroying her brain.

You know how I’ve dealt with it? Sometimes I don’t. Those 1 minute phone calls? It would be best if they were daily. But I’m surprised at the ease with which I sometimes “forget” to call. I also lean on my sister to care for her.

Out of the estimated 42 million of us in this country who now provide direct care for a parent with dementia, most are wives, sisters, and daughters. And we’re in a precarious position tied to this finite rope that’s being tugged at both ends by kids and parents.

It can make you insane. As a caregiver, it can take your health, mentally and physically.

I see the light

Last night my sister asked me to join her at a presentation on Alzheimer’s (By the way, Alzheimer’s, I learned, is just one of about 90 different forms of dementia.).

I thought it was going to be boring and filled with information we’d already heard and did our best to apply.

The presenter was–it’s difficult to come up with a better word than–amazing. Her name’s Teepa Snow.

And instead of Dementia 101 we got 2 hours of a sad, difficult, interactive and even humorous graduate course in what it’s like to live with dementia, how it affects the brain, the immense commonalities we, as caregivers, use to try to deal with it, how we want so much, too much, to HELP, and where we fall short, especially when we end up a blithering mess or on the verge of being 5150’d ourselves.

A mere hint of what we learned:
- Push less by not relieving your stress with scolding, teaching and wasted words.
- Use direction by doing. Don’t expect them to remember verbal directions.
- Have a team, a tag team that you can rely on when you’re ready to “lose it.”
- Say, for example, “I know Mom, this is hard.” And don’t be afraid to show it. Be sad for and with them; because,
- Empathy is lost. They’ll blame you and others due to their inability to step in your shoes.
- Partner with experts to make inevitable changes (i.e., take away car, moves, finances, Power of Attorney, etc.).
- Stop correcting. What’s the point? What’s. the. point?
- Learn how to be a care Partner not a care Giver.
- Concocted lies, stories, and seeming nonsense are their momentary reality.
- They’ll talk bad about you.
- Emotions quickly shift.
- This is a different person; don’t miss the grief that’s required of it.
- Filters are reduced or lost completely, leading a once strongly moral person with a certain mode of conduct that’s been there for life to do the unexpected.

That last one was, well, especially good to know. With greater frequency she prefaces, “Now, you’ve never heard me swear,” right Mom, never. Here it comes, “but this getting old is … HELL!”

And I also didn’t know how much she disliked long hair, facial hair, uncovered bra straps, tattoos, and certain ethnicities. She lets you know.

But the one that really threw me was when we were out at an event and she leaned over and growled in my ear. Yeah, like this, “Grrrrrrrrr!” which was followed by, “You see him? (pointing, of course), He’s good lookin’!”

Eww.

My Mom

Mom you’ve been the one with whom I’ve shared my challenges and joyful moments. You’ve been the one to give me compliments on my work, things I’ve designed, or what I’ve written. You gave me ideas. You were my cheerleader, encourager, and grammarian. You were my sounding board. You listened to me about relationship issues. You gave me advice. Undoubtedly, you bit your tongue.

We’d have conversations that were engaging and you made me think. We’d talk on the phone for sometimes an hour or more. I recall driving across town sometime in 2010. The trip took over an hour and we talked the whole way.

But that was the last time. Something was different, I just didn’t know what.

Now calls are for connection. Emotion. As they’re no longer supported by cognition. Like a fleeting butterfly connection is made but then lost again.

Mom some of the things you say are often funny in the moment. Yet the pain you feel is apparent and moves me to redirect you as I wish to protect you from what I perceive as uneasiness.

Perhaps I need to let us both go there more often. But that’s different than what we’ve done. And difficult.

The stretching sometimes feels overwhelming. We don’t know what to do, Mom. I wish you were able to tell us. This is disorienting. Yeah, I know, far more so for you.

So we make the best of it. We laugh. We struggle. We learn. We love.

And, Mom, even though you can sit right here beside me, I miss you.

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Additional resources:
http://www.teepasnow.com/
http://alzfdn.org/ (Alzheimer’s Foundation of America)
http://www.seniorhelpers.com/