CAPTAIN AMERICA vs. ALZHEIMER'S

Joe (Captain America) flexing with grandson Bryan 2012

Several weeks ago, Joe and I drove over to the Health Research Center in Peoria, Arizona.  We had heard through Joe’s neurologist that as many as 25 clinical studies were underway and that, at any given time, there might be ten open for enrollment.

We thought we’d just check out the possibilities of becoming involved.

We met with a very interesting researcher who provided a wealth of information and helped us better understand how research studies assist in advancing medicine and medical care.

He said they offer several different kinds of Alzheimer’s studies and trials, including those that evaluate medications that may enhance memory and delay worsening of the disease, as well as new techniques for brain-imaging and early diagnosis.

We certainly didn’t go there to find a miracle cure for Joe.  (That kind of storyline only happens in novels and B-movies.)  In my mind, our visit was directed towards the future; how could we help fight the disease (Al) that might someday show up on the door steps of our children and grandchildren?  If there was something to be found in the process that could help Joe in his own fight, it would be a bonus.

The researcher focused on one particular trial that would involve daily treatments and cognitive testing over a six week period. 

It turned out Joe scored one point too high on the memory qualification test, meaning that his memory is still too good.  Of course I had to tease him by pointing out that he had in effect “flunked” the test by scoring too high; I really am terrible.

There were a couple of eye openers for me during that visit. The first was that brain research for Alzheimer’s needs healthy subjects as well as those currently struggling with the disease.  After the researcher eliminated Joe’s involvement in that particular study, he turned to me and asked if I would consider participating. 

Wow. That possibility hadn’t crossed my mind.  I was focused on Joe. But after a quick trip to reality I decided that as Joe’s caregiver, a 20 mile roundtrip trek to a research center every day for six weeks just wasn’t practical, so I had to decline.

The second eye opener was a better understanding of how Joe now thinks in terms of the future.  Increasingly he’s focusing on the here and now; what am I doing and what happens directly after this?  Thinking too far ahead is becoming abstract, and confusing.

Joe was always civic-minded, a person who wanted to make a difference and contribute to the community.  For years he was heavily involved with national and local charitable organizations.  He was my “Captain America”.  I used to say he could squeeze blood out of a turnip when it came to fundraising; he certainly helped strengthen the Loaned Executive Program for United Way.

A year ago, it had been Joe who was eager to link up with a research group to get involved.  But on this day, he seemed a bit indifferent and apprehensive, or even somewhat fearful of what might happen to him.  I suspect that it’s just part of Al’s growing influence and the passing of more time.

We left with our names on the list and agreed that sometime in July, after our trip to Bend, we would be back at the center to talk about other opportunities.

I got to wondering why “guinea pig” had become the colloquial term for research subjects.  (I’m not implying that that term was used in any of our conversation with professionals.  It was just my own curiosity.)

It turns out Guinea pigs might not be the most common experimental subject today, but as early as the 17th century, they were.  In 1890 the cure for diphtheria was discovered largely due to the use of guinea pigs and as a result, millions of children have been saved. 

So as much as I may cringe at the idea of an animal being used in research, I proudly accept the metaphor and am willing to become a “guinea pig”.

That doesn’t mean that I would blindly become a “lab experiment” or would give researchers a “piece of my mind”, at least while I’m still using it…not that they would even want it such as it is.

It means that I now understand that advances are possible because people are participating in clinical trials and studies.  As the focus of Alzheimer’s research shifts increasingly towards prevention, I could become a partner in scientific discovery.  

Aha, sounds exciting…”partner in scientific discovery”. 

It won’t matter whether Joe is able (and I do mean able) to embrace the process or not; I will continue to pursue any possible way to stop Al, “The Uninvited Guest”.

On their way to Grandpa's spa
in 2001

I want to ensure that in the future none of our grandchildren experience cognitive impairment and wonder if they have Alzheimer’s like Grandpa did.

I have to get going this morning, Captain America and I need to get to the gym.  There are muscles to flex and calories to be burned.

ALZHEIMER'S--THE MAGIC ERASER

We are all fallible, impulsive creatures, uniquely adept at messing things up.  Yet we also hold superpowers strong enough to create what was once unthinkable, unimaginable.  We can go “where no one has gone before”. 

It’s ironic.  The human brain, through it’s billons of cells, can interpret sensations from your body, combine them with sights, sounds and smells from the outside world and arrange them all into a single incredible life; yet all told it weighs only about three pounds and has the texture of firm jelly. 

But what’s even more incredible is that something as mysterious as Alzheimer’s disease can effectively erase one’s living awareness of the world. 

The erasing sometimes takes years to detect.  But, once it starts it’s unstoppable, at least in today’s world.

I picture Joe standing at a long chalkboard writing out life’s memories as they occur, while Al is some distance behind wielding a big eraser and busily rubbing things out, a little here and a little there.  Occasionally, Al jumps ahead and erases something Joe has just written.  It goes on and on.

I suppose most spouses dealing with Alzheimer’s have that moment, the “magic eraser” moment.  It’s the day our loved one is diagnosed and we know that “Al” will be part of our lives for the rest of our time together. 

So as caregivers, what do we do?

We do what all humans are capable of doing; we show emotion, maybe cry and get mad; then we adapt and we evolve. We make mistakes and we learn.  (Then we go back to step one and repeat.)

The first thing I learned was how much I didn’t know about Alzheimer’s.  It was frustrating because Al made himself (as the uninvited guest) very much at home with us.

There really is something to the old adage, “information is power”.  The more I understand about Al, the more I feel I have some say in what he does to us; that perhaps with good information and a good plan I can maintain some amount of control.

Now “control” is a relative term. It’s defined as “the power to influence or direct a people’s behaviors or the course of events.  To exercise restraint or direction over; to hold in check; to curb.”

Okay, so maybe “control” is a little overreaching.  But the ability to have some influence is not.  The everyday decisions I make as Joe’s caregiver directly influence his physical health as well as his emotional and psychological well-being.  It’s a caregiver’s power as well as their burden.  But it certainly doesn’t mean that I can thwart the magic eraser.

Couples influence each other all the time, it’s not extraordinary. But generally if a couple makes it and stays together, it’s a two way street, the old give and take. 

With Al around, that balance is disrupted.  And that’s what creates the struggle for a spouse who is also the caregiver.  I sometimes have to remind myself that Joe isn’t the problem, Al is the problem.  It is the disease that is the disruption.

For me, battle lines are drawn.  I think I understand what Joe and I are up against.   So every day we put on our armor and ready the defense.

Right now our best defense is a healthy diet, regular exercise, proper sleep, good medical care, and the support of family and friends. 

It would be helpful to have a Jedi Lightsaber.  (I’m thinking that might just trump the magic eraser.  I believe I saw one for sale on Amazon.)

That reminds me, a few laughs are part of the defense. 

A couple of weeks ago Joe decided to grow a beard.  He has done this only one other time in his life.  So we weren’t sure what it would actually look like. 

I’m happy to report that it’s quite nice and almost entirely white.  But I’ve also noticed that it’s chameleon-like, and depending on the color of shirt he’s wearing the beard changes colors.

The other day while we were out shopping at the mall (Al isn’t wild about malls), Joe sat at the front of a store waiting for me to return.

A skylight eventually floored him with light which reflected onto his aqua colored shirt turning his beard a lovely minty green and drawing the attention of passing shoppers.  

I came out to meet him and just had to snap a picture.  I’m thinking a purple shirt will be nice for tomorrow.

ALZHEIMER'S--FIFTY SHADES OF DEMENTIA

ALZHEIMER'S--"AL" OVER THE WORLD

Alzheimer's is the Same Around the Globe

Today I reviewed the status of my blog site and noted (with great surprise) that in addition to its US audience, the blog has been read in nine other countries.

That reminded me that it doesn’t matter where we live, what religion we are, how much or how little we have, what language we speak or the color of our skin.  Throughout the world, Alzheimer’s is the same monster and we are all just trying to figure out how to deal with it.

You couldn’t write a script with a more compelling storyline of love, laughter, sorrow and loss than the stories being lived right now by Alzheimer’s families around the globe. 

I read recently that worldwide, an estimated 44 million people are believed to be living with Alzheimer’s or other dementias. 

Wow, that's huge.  If that doesn’t make a person think and want to do something about it, then I don’t know what it takes.

Actually, that’s not true.  I do know what it takes.  It takes Alzheimer’s “getting personal”.  Until it got personal, close enough for me to touch, I didn’t think about it either.  

It's not that I didn’t know something about Alzheimer's.  I had two aunts that suffered with the disease, but they both lived far away in other states, and back then it just wasn't something we talked about. So in my busy younger life it wasn’t on my radar.

I’ve chosen to write about our family’s experiences with Alzheimer's (Al) and share them publicly.  It’s my therapy, and I’m hoping that in some small way I can help move the Alzheimer’s conversation forward and make it more personal/relatable to others. 

Generally I approach Al with humor and maybe a little defiance.  That’s just what works for me.  But I know that Alzheimer’s is serious business. It destroys families.

I’ve joined the fight and have become a "Wipeout Alzheimer’s" advocate.  I am fortunate to have many talented women in my life (both family and friends) and I’m asking that you join me in the fight to defeat this beast. Please logon at: www.wipeoutalzheimers.org

Here is an excerpt from the website:

Every 67 seconds a brain develops Alzheimer's and two thirds of them belong to women. Wipe Out Alzheimer’s is a grassroots, social action campaign to mobilize a movement of women to get educated, get engaged, get empowered and wipe out Alzheimer’s. In partnership with A Woman’s Nation, the Alzheimer’s Association and a global community of empowered women, the challenge will enlist women to take “The Pledge”, help raise funds to research women’s brains and challenge other organizations to make women’s brain research a priority. The challenge was informed and inspired by "The Shriver Report: A Woman's Nation Takes on Alzheimer's"

There was a time when Cancer and AIDS were dirty words and not spoken in public.  Not anymore…Let’s do the same thing with Alzheimer’s.

Women have the power to do this.  We can’t wait for this to be someone else’s priority.  If Alzheimer’s hasn’t yet touched you, it will.

I generally tell people to "lighten up" and not take life too seriously.  I still feel that's important.  However, for this I will make an exception.  Let's kick butt.

With hope,

Jane Gayer

ALZHEIMER'S--365 DAYS

Joe pool walking in 2015

Today I looked at the calendar and noted that Joe and Al and I moved to Arizona 365 days ago.  As I sat outside this morning in the sunshine and savored the sweet smell of the citrus blossoms, I thought about our move and all that has happened in that amount of the time, just one year. 

Well into the first week after we arrived, we were still recovering from the stress of a 1,100 mile road trip from Bend, Oregon.  We had just packed up, cleared a house, and said goodbye to a place we called home.  We’d left family and friends for the unknown and had become immigrants to the 48th state in the Union, famous for its arid desert landscape and hardnosed Maricopa County Sheriff (also named Joe).

Considering that Joe and I have moved over 10 times in our 35 year relationship, it wasn’t an altogether unfamiliar scene.  But there was something unique about this time.

I’ve heard people talk about buying their “forever home”, which I had never understood.  It sounded so narrow, so final.  Why would anyone want to stay in the same place for the rest of their life? 

For us, moving had always been an adventure and involved creating something.  It never was the end of anything, it was a beginning.  So why did this time feel different?

With this move, we were preparing.  We didn’t know exactly what would happen but we needed to be ready. With Al in the picture, we were now a threesome in an increasingly complicated relationship and we were definitely in for Mr. Toad’s Wild Ride.  It was time to buckle up.

This was more than “downsizing” (we’d already done that).  This was ”Alsizing”, meaning getting into a manageable, maintainable, and practical state regardless of what type of mess Al might create for us.

In our younger years, Bend, Oregon had been our paradise.  We rushed to Bend every weekend we could and vacationed there in the summers.  From the time Joe was 42, that’s where we’d celebrated his birthday.  (He turns 77 in July.) We even managed to make Bend our home before we both retired. 

As time passed, we realized that we preferred golf balls over snowballs and began splitting our time between the warm southland of California and Bend’s high country.  (Well, not exactly an even split, the southland was getting to be a larger slice of the pie.)

At one point we decided splitting our residence was too complicated, so with some trepidation, we loaded up a moving van and the mighty SUV, said adios to new friends and headed back to the Oregon mountains determined to fare the winters.

That didn’t last long.

Somewhere along the way, with Al now a fully diagnosed family member, ice and snow and cold became our enemy.  There was no more pretending that we were going to partake in winter sports and slide down a mountain; and besides, we all three stunk at Nordic skiing and snowshoeing.

Even though we loved summers in Bend, we had to stop our geographic schizophrenia, look Jack Frost in the eye, and say goodbye.  Like in the movie “Frozen” it was time to “let it go”.

So, how has it worked out?

That’s a good question with no simple answer. 

It was hard getting Joe and Al settled and comfortable in the new environment (change is not welcomed by Al).  We both miss family and friends left in Bend.  But, through it all, we managed to find a rhythm that worked for us and it certainly has not been business as usual.

The fitness facilities in our community are first rate and we discovered that pool walking (although it looks kind of ridiculous) is a great way to keep the body moving and well oiled.

We enjoyed refurbishing our little mid-century modern home and managed to survive a very hot first summer season. 

We celebrated Joe’s birthday in Sedona with a spectacular thunder storm and for the first time experienced a true monsoon (which was not highlighted in the travel brochures).

It’s been difficult to integrate into the community with Al being the anti-social kind of guys that he is.  We’ll continue to work on that, but it's been nice being closer to Joe's sister.

But most importantly, Joe is holding his own against Al.  Oh, they get into it fairly regularly, but Joe still wins a good portion of the time.

Snowwoman in 2012

Okay, I’m going to be honest here. I do occasionally think about Bend’s winter weather and miss the idea of making a snowman. I know that sounds childish, but I do.  I never felt more alive than just after getting a snowball in the face or having my fingers tingle as they thaw out from an afternoon of shoveling snow.

Wait a minute…I just remembered I hate cold.  Never mind all of that.

I’m putting on my flip flops and going outside on the patio to read, and I may walk over to see my neighbor.  I just checked our fancy thermometer and it’s 93 degrees right now.  The only cold thing I’ll enjoy today is a frosty glass of lemonade.

Year number two, SHOW US WHAT YOU'VE GOT!!

ALZHEIMER'S--THE LOWDOWN ON HIGH TECH

Only remotely in control 2015

Life isn’t as simple as it once was.

My parents bought a television set when I was 5 years old.  It was the first in the neighborhood and quite a novelty.  We had neighbors and relatives at the house almost every night, in awe of the black and white magic coming out of the box. 

If you could twist a knob, you could have all three TV channels right at your fingertips; that is, if you could position the antenna just right.  (My father was the only one authorized to touch the television, especially the antenna.)

Making a telephone call in our rural environment was even simpler. Just lift the receiver and wait for the operator to ask what “party” you wished to speak with.  It was a bit like “voice command”.  (For you younger folks who may be reading this, this was in the olden days, the 20th Century.)

Not long ago, I was talking about this with my granddaughter and she looked at me with a mix of pity and compassion for having grown up and survived in a world prior to popular technology.  I’m sure she felt much like I did when my mother described her life on the prairie without plumbing.

Our house today certainly isn’t cutting-edge anything, but we are (at least I am) plugged-in and taking advantage of current, mainstream electronics.

Joe was never enthralled with such things.   I used to jokingly say that he was one of the lowest tech guys I knew considering the fact that he’d made a living in high technology.  He always looked at it as a necessary evil. He certainly wasn’t an early adopter, one who embraced the stuff.  (I recall him talking about dictating memos to his secretary, kind of like they do in the TV series “Mad Men”.)

It occurred to me that Al is very “low tech”.  Put Joe and Al together, and they have a heck-of-a-time trying to manage any kind of technology.

A little while back I hired a company to install “a home system” for us, one that would link everything together, and we marched into “WiFiville”.  I hadn’t considered what it would mean to Joe and Al as users.  That was a serious mistake.

Even the simplest basic functions of the system now seem complicated.  The Smart TV’s touch screen remote control operates a host of components that completely baffle and perplex Joe.  He frequently struggles to change the channel only to get frustrated and opt for a nap instead.

It’s a similar battle with Joe’s cell phone.  Assuming he remembers to plug it into its charger, there is still the problem of multi-function keys, directories and options, all of which can send him into an electronics induced tizzy.

For Joe (with Al helping), using a PC to write and send an email is a huge undertaking, a bit like launching a rocket into outer space. Because of this, he avoids doing it.  I glanced at his email account the other day and was horrified to see that he had almost seven hundred emails in his inbox.  (I think that constitutes hoarding.  They certainly were junk mail.)

The thing is, the world of technology doesn’t recognize cognitive impairment.  Even without Alzheimer’s in the picture, things are complicated and getting more so with every new “doflicky” on the market.

There will come a time when Joe simply won’t be able to keep up, and whether we like it or not, he will be back into the “good old days”, operating without all of our fancy gadgets.  I don’t think he’ll care.

The task for me now is to help Joe manage as many things as he can on his own without feeling assaulted by the complexity of the tools.  The other day, our daughter sent a picture of the remote control with everything on it covered with duct tape except the channel selector and ON/OFF switch (a little extreme but not a bad idea).

Sometimes, but not often, I long for those days when something sizzled and smoked to let you know it was a goner; there would be no chatting support, no remote diagnosis, you just unplugged it, grumbled a bit, (maybe kicked it) and bought a new one.

A couple of weeks ago, most of the United States switched to Daylight Saving Time, but not Arizona.  Sunday morning, all of the electronic clocks in the house made the switch anyway.  Even our cell phones were confused.  It took three people (including my niece and her boyfriend) to investigate and confirm the correct time.  Joe and Al abstained. 

There is one thing I know for sure. Joe will not miss the high-tech jargon, geekspeak, or hybrid shorthand of today’s touch screen world.  He will not go kicking and screaming, dragging a Smartphone and laptop behind him and wishing he’d saved everything to “The Cloud”. (What the heck is The Cloud anyway?)

Joe showing "real pictures" to his grandchildren

ALZHEIMER'S--SPRING TRAINING

Joe & Jane Spring Training 2015

This is the most perfect time of year to be in Arizona.  The desert has started to bloom, nights are warming up, sweaters are being stored, and best of all, it’s Spring Training.

If you’re a baseball fan you already know that every spring, just like the swallows returning to Capistrano, big league baseball teams return to sunny Arizona to tune and test their skills. 

They call it “The Cactus League”, and there’s a month long schedule of games which includes the Padres, Mariners, Royals and Rangers, to name a few.

This is our first Spring Training and Joe’s very excited about the opportunity to be up close to today’s baseball greats.  My dear niece and her guy are coming this weekend, and we’re all going to a game.

Since Al joined our household, I’ve learned the importance of planning for such events.   The more Joe understands about the details of what’s happening, the less stress and confusion we’re likely to experience.   

So last week, Joe and I drove out to the Surprise Campus to buy tickets, scout which gate we’ll use, and plan where to park.

As I mentioned, it’s a large complex that has several gates and parking lots.  Buying the tickets is the easy part, but figuring out the gate and parking is a whole other thing.

I quickly manage to get us in the wrong place, have to make several corrective moves, and wind up circling the park trying to get back to where we started.

Nowadays when we go out in the car, Joe’s role is to navigate.  He takes this very seriously and I’ve just totally confused him. His reaction is quite typical (no need to say more).  

He demands that I stop the car and let him out so that he can go ask someone who “knows what they are doing” (anyone other than me) how to get where we need to be. 

By now I am about to push Joe out of the car anyway, so I stop, put on the emergency flashers (I’m in traffic), and Joe gets out.  He walks over to a guy manning a gate entrance and after what seems like a long time, the two walk back to the car.  I’m still in traffic blocking a lane. 

The gate guy asks if I want to see the inside of the park.  Before I can answer, Joe tells me that I do.  So the gate guy gives me directions and I drive off to find the park lot, wondering how I get into situations like this in first place.

It turns out the gate guy is a very nice older gentleman.   He ushers us toward the stadium which, at this point, isn’t open to the public (it’s not a game day).

Joe and I walk through the gate and as we round a corner we see that we’re well above the field overlooking a beautiful, perfectly mowed playing surface. The entire stadium is pristinely polished and very quiet.  The only other people we see are a couple of employees busily unloading supplies.  

It’s like we have just entered a grand cathedral before a service; everything is perfectly prepared and waiting.  We stand there in awe and look out over the scene with a kind of reverence that makes you feel like you should whisper.

We eventually wander over to where we will be sitting, and agree that we have good seats (no stairs for Joe to climb and near to the restrooms).  It’s all good. 

By now, Joe’s mood is completely transformed from what it was before we walked into the stadium.  He shares some of his baseball knowledge with me as we slowly walk back out, neither of us really wanting to leave.

  

Back at the entrance, we stop to thank the friendly gate guy. I shake his hand and ask his name.  He smiles and says, “I’m Al.”

Joe and I turn to each other with big knowing smiles.  Al, (the gate guy) gives us each a souvenir pack of baseball cards (just like we were kids) and we say good bye.  We hold arms and try not to get killed jaywalking back to the car. 

It’s funny how things work out sometimes.  If I hadn’t been worried about going to the game and how Joe would deal with the hubbub, decided to drive out and scout the place, then gotten lost and frustrated, we wouldn’t have met Al (the gate guy), and had such a lovely and surreal experience inside the park.

Joe with the family (Kathleen and Cobey)

Now we both are looking forward to going to the game with our family and seeing the park transformed into its crowded, noisy, concession smelling greatness.

“Take me out to the ball game, take me out with the crowd.  Buy me some peanuts and……”