That’s what love is…

14 Tuesday Aug 2012

Posted by Ann Napoletan in Care Options, Caregivers, Eason House, Inspiration, Mom, Ruminations

I’ve been thinking a lot lately about how blessed we are. If we have to be in this situation, dealing with this disease, we couldn’t ask for a better facility or team of caregivers – there are no words to describe what special people they are. They’ve truly become family. While there may be a few places that consistently offer care as good, I’m convinced there isn’t a single place that provides better.

The past week has been less than ideal; let’s just say Mom’s moods are changing quicker than the Presidential candidates’ campaign promises. She can be hugging and kissing the girls one minute, and five minutes later, for no apparent reason, she’ll haul off and backhand them. And, alas, do not be fooled by her frail appearance – mama is as strong as an ox, and she can hit hard!

Ups and downs, the caregivers at Eason House take it all in stride, they don’t complain, and they love their charges unconditionally. In fact, I’m pretty sure that when the phrase “unconditional love” was conceived, it was to describe people just like them. Let’s face it, these girls see it all – the good, the bad, and the ugly.

Here’s something to ponder next time you’re having a bad day at work. Suppose your typical day involved: having food thrown at you, being hit, kicked, pinched, bitten, and/or cussed at, cleaning up every imaginable bodily “fluid,” including ones you never knew existed… plus cooking breakfast, lunch, and dinner, giving showers, doing the laundry, keeping the house clean, entertaining your clients, feeding people (literally), dealing with family members, providing reports and updates to doctors, watering the flowers, answering the same questions multiple times per hour (…what day is it? …when are we leaving? … what time is dinner? -to name a just a few), and a myriad of other “duties as assigned.”

Can you imagine juggling all of that? For the caretakers at Eason House, it’s literally all in a day’s work. And somehow, through it all, they manage to smile, and most importantly, they manage to love.

I would be remiss if I didn’t mention a couple of other things. Most of these girls work 12-hour shifts. Come on, 8-hour days are for sissies! We’re talking 12-hours back to back to back, etc. And they certainly don’t do it for the riches. I have to admit, sometimes I wonder why they DO do it. Then I’m reminded that they do it because they’re angels on earth. They do it because of the love in their hearts.

I never knew it was possible for a person (who isn’t even a family member) to love someone the way these girls love my mom. Despite all the sh*t (literally), the mood swings, and the obstinate behavior, they give true, unconditional, unparalleled, no holds barred… l-o-v-e. Every.single.day.

So, all of that said, when I read this piece that describes the kind of care we all want for our loved ones, it rang so true…

Sometimes, it’s impossible to find adequate words to describe a situation or feeling. That is certainly the case when I think about how thankful I am for Eason House and our awe-inspiring caregivers.

The chicken and the egg…

12 Sunday Aug 2012

Posted by Ann Napoletan in Mom, Prevention, Research, Ruminations, The Early Years

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I recently happened upon this article about an Arizona State University study describing the effect of social interaction on honeybees. Essentially, the study found that older honeybees remain more youthful when they assume roles that would normally belong to their younger counterparts.

While it’s impossible to hold back the hands of time, the article does suggest there are things we can do to maintain our vitality.

Staying active — Going for walks, taking music or swimming lessons
Staying social — Being a member of a social organization, staying engaged with friends or family or volunteering for a local school or cause
Maintain cognitive stimulation — Read, play games (card, computer, iPad, smart phone etc)

Years ago, when we started to notice Mom’s decline, I remember being so frustrated. The idea of ALZ hadn’t even crossed my mind yet, as I gradually watched her become less and less involved in life. When she retired in 1998, she had plans for the future – she wanted to travel, take up a hobby or two, and volunteer in the schools or at one of the local hospitals.

First, though, she just wanted to take a break. I remember her saying that after all those years of working, she just relished the idea of getting up in the morning and reading the paper in the sunroom. After all those years of living on a schedule, the time had come to relax and stop watching the clock.

The problem was, she never did get moving. She never followed through with her plans, and little by little, bit by bit, she began to withdraw. The person who was always so social, always the life of the party, didn’t want to do anything, and the more I nudged, the more she seemed to dig her heels in.

I’ll always wonder how much her inactivity contributed to the speed with which ALZ took hold. But then again, in the spirit of the chicken and egg, which actually did come first? Perhaps the disease was already manifesting itself well before any of us noticed changes in her. Maybe she knew in her heart of hearts that something just wasn’t right. Maybe she began to doubt herself because of the disease, and soon she was being held prisoner in a viscous cycle. The more she doubted herself, the more she withdrew, and the more she withdrew, the worse the situation became, until the disease began to win…

In Mom’s case, we’ll never know which came first. As for those of us in our 40’s and 50’s, all we can do is vow to remain active, keep our minds challenged, and always have a purpose in life. It’s scary as hell, though, isn’t it? The thought of being trapped by this disease and sucked into that lonely, vicious, never-ending cycle…

Easy come, easy go…

16 Monday Jul 2012

Posted by Ann Napoletan in Eason House, Mom, Research, Ruminations

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Mother’s Day 2011

So, the stretch of really good days came and went, and now we’re just somewhere in the middle… not great, but could be worse. When I stopped to see Mom after work tonight, they said she’d been up since midnight, which would explain why she could barely keep her eyes open.

Although she wasn’t very interested in dinner, I did get her to eat almost everything on her plate. She was really quiet, though. Nonverbal, which is so odd for her. Aside from the big smile that lit up her face when I came in, she was mostly expressionless. I think I hate this almost as much as the explosive outbursts.

Speaking of outbursts, it seems over the past week, she’s gotten angry enough to slap several of the girls – hard – across the face. Ah, that just makes me cringe. She has the best caregivers in the world, literally, and they don’t get paid enough to put up with most of what they have to deal with (did I mention Mom also showered one of the girls with her applesauce this morning…). Thank God there are people like the amazing caregivers at Eason House, who certainly don’t do what they do for the money. To say they are a blessing would be a gross understatement. There has to be a very special gathering spot in Heaven for each and every one of them.

As I sat there feeding Mom tonight, I had one of “those moments.” The surreal moments where I’m mystically transported, and suddenly I’m on the outside looking in. I stand back and take in the scene before me, and just can’t believe this has become our reality. By now, none of this should be shocking, but it is at times. It truly is shocking. Perhaps it will always be that way. Perhaps I should stop letting that surprise me.

What can we do, but continue to take things one day at a time and avoid falling into the trap of worrying and wondering what tomorrow, next month, and next year hold. We try to focus on the moments of joy and the fact that one day, there will be a viable treatment and even a cure. It may not come in my lifetime, but it will come. Studies like this one from Iceland, where researchers have identified a rare genetic mutation that appears to protect against Alzheimer’s; someday the world will know the benefits of research that takes place every single day, across the globe.

So, our visit ended after Mom finished her dessert. I walked her over to the couch, and covered her up with her favorite blanket (Steelers, of course!). I put my arms around her and she fell into a peaceful sleep… Sweet dreams… ♥