ALZHEIMER'S--I SEEM TO HAVE MISPLACED MY SENSE OF HUMOR

Joe and grandson Calvin having a big laugh 1994

Have you ever heard something that you thought was humorous and then tried to explain to someone else why it was funny? Sure you have, and I’ll bet it was difficult. 

How do you explain humor? Or better yet, how do you explain sarcastic humor? 

There are so many elements involved in humor that for me, it would be like trying to explain nuclear fission, an inexplicable mystery. 

With thousands of years of speculation, there’s still no real agreement on the purpose of humor. I say, “Who cares”?  I know what it does for me. It makes me feel good and it makes me happy.  

One of my greatest treasures as a mother and grandmother has been that first time one of the children laughed at something they found funny. It was confirmation that they truly were developing a sense of humor, a personality; one they would carry with them throughout their life. 

I had no idea that a person could lose their sense of humor, I mean really lose it, simply not have it anymore. Well, that was before Al, the Grinch, parked his sled in our yard.

There are a few situation comedies that we frequently watch on TV and lately I’ve noticed Joe’s not laughing.  Not that the programs are so excellent, but we could always find things that made us laugh. (How could you not laugh during an episode of “The Big Bang Theory”?)

I thought it was just the same hearing issue. So, I started repeating the punchlines. It didn’t help. Even with the TV cranked up a few decibels, still not much.

Now, I don’t give up easily, so I started rephrasing the lines for him with extended explanation. Oh boy, that doesn’t help at all.

I’ve known people that I would call very literal, meaning they took words in their most basic, exact sense and didn’t leave room for humor.  But this was different. Joe wasn’t like that.

He’d never been one to tell jokes, but he would be the first to react. He had a BIG laugh, one that filled the room. He liked my attempts at humor and called them “Jane Jokes” (meaning mostly corny). 

I’m not saying that Joe has lost all of his sense of humor, it’s just different than before Al. It’s slower, less spontaneous, and requires a little coaxing (we’re still talking about humor here). 

I’ve taken on the challenge to help Joe laugh every day, at least once, if not for him, for me.  Some days it’s more of a challenge than others to pull him away from Al, out of the grumpy zone, and get a good laugh going.

Today was a routine visit to Joe’s neurologist (of course Al tagged along). There was no news, good or bad. We just shook hands, shared a few smiles, listened to the “no news”, and were out the door.
 

On the way home we talked about Joe’s appointment and what it must take for a doctor who is trained to “heal” to go through that process day after day, saying the same things to different faces, each patient sitting there with their own “Al”.  

Wow, if anyone could use a good laugh it probably would be Joe’s doctor.

It may seem trivial to talk about laughing with so many other “Al” issues on the road ahead of us. I understand that there are many pieces of Joe that I may lose. But, laughter and humor are right up there on the top of my list of things I will fight for. And that’s no joke.

At the risk of being politically insensitive, we’re hoping to laugh all the way to the funny farm.

Valentine’s Day was last weekend.  We should have booked a flight from sunny Arizona to frigid Northern Alaska so Joe and Al could go ice fishing.  Did you catch that?  Now that was “sarcastic humor”.

ALZHEIMER'S--THE DEAR "AL" LETTER

Joe and grandchildren 2004

By age five you probably had it down: 
Don’t talk too loud. 
Say please and thank you. 
Keep your hands to yourself.
Wait your turn. 
Don’t talk to strangers. 
Flush.
Tell the truth. 

These are some of the social rules that kept you out of trouble.  But, if you’re undergoing cognitive changes (living with Al), the simple social rules you’ve applied your whole life can suddenly start to unravel. 

Joe and I are shopping.  It is just before Christmas so the lines at the checkout are longer than usual.  We’re stuck behind several other customers so Joe (and Al) decides to move out of line to sit on a stack of toaster ovens. 

Joe’s right on an intersection of aisles, and is watching shoppers pass.  He sees a mother with two toddlers and a baby coming down the aisle.  (Joe just loves babies.)   As the little family walks past Joe, he stands up and reaches out for the baby.   The mother stops in her tracks, looks startled, then pulls her baby slightly out of Joe’s reach.

Joe hasn’t noticed any of this, and begins to speak to the baby, “Hi there little guy.”  The mother continues to look at Joe.  It takes her a moment to finally decide that Joe isn’t menacing or threatening.  She pauses as long as she can without seeming rude, and then hurries off with her chicks.

I finish up my purchase and join Joe.  “You can’t touch other people’s children,” I tell him, “they don’t know you.” 

Joe looks puzzled. “I was just saying hello. Did you see how cute that little one was?”

At this moment, Joe has no idea that the mother didn’t want him touching her baby.   I try to explain why, but the notion that she might feel threatened just doesn’t make sense to him.

Awhile back, we’re at a restaurant when Joe and Al march to the front of the line and demand to be seated.  Joe has waited long enough.  It doesn’t matter that we’re still four couples down on the waiting list, he’s hungry.

A similar event takes place at his doctor’s office.  We’re waiting in an examination room when the doctor arrives a few minutes beyond our appointment time, the first thing Joe says is, “YOU’RE LATE!”  

I know there’s some term for what’s going on in Joe’s mind.  I’ve read the descriptions of what happens to your “executive function” (kind of the “CEO” of the brain) when you’re dealing with Al, Mr. Faux pas.   But it’s tough to see Joe struggle with awkward situations that in the past he would never have created in the first place.

Joe was plugged-in to social protocols.  He made a living talking to people, selling the tangible and intangible.  He could size up a social situation just by looking around the room. He analyzed the bejesus out of everything. 

It’s frustrating not knowing exactly how to help Joe.  It’s easy to manage the physical things for him like cooking, doling out medications, and driving place to place.  But it’s much harder to deal the social issues.  How do you tell your husband that he’s just offended someone with an ill-advised comment or action, and not seem overbearing?  There’s a fine line between being tactfully helpful and being bossy.  (Joe would say I frequently pole vault over that line.)

Well, I’ll keep working on it.  Somewhere there‘s a balance to be struck.

I’ve been told that writing letters can sometimes be cathartic (to help sort out your feelings and emotions).  I think I’ll try it.

This is my angry “break up” letter to Al.  (The director in me says to read this in a sarcastic Christopher Walken dialect.)

Dear Al,
I assume you were satisfied with your time with us in the Northwest, and that you’ve been enjoying the sunny weather here in Arizona.  However, there are a few things I wish to get off my chest.

First, just who do you think you are, sneaking into our lives and messing up all of our years of planning and preparation for our future?  Do you not understand how you are affecting the lives of our children and grandchildren?

Second, I suppose by now you’ve noticed the pain, frustration and disruption you’ve caused Joe, not to mention the scissors you’ve taken to his short term memory.  

Lastly, you are cruel and heartless, and lack all conscience.  It is without regret that I inform you that we are dumping you.

There is an army coming for you (our posse is armed and dangerous), and we’re going to fight you with our time and our money.

Sooner or later, Al, you will be kaput, a goner, finished, and we will all square dance at your demise.

Sincerely,
Jane Gayer

There, I do feel better.

***Join the posse and help us beat Alzheimer’s.  Logon at:
http://www.alz.org

ALZHEIMER'S--PITCH ONE TO ME

Joe and Grandson Joey at the Tournament 2014

Just after Joe and I started dating, so about a million years ago, we attended our company picnic together.  (Yes, we were an office romance.) 

Joe in 1956

By then, we had shared a few stories from the past so I knew that Joe had been an athlete.  He’d told me about growing up in the Midwest in the 40’s and 50’s, and how he’d spend most of those summers on a ball field.

He explained that his first “real” job, after being discharged from the Army, was with a large company that also had a softball team that competed in a five state regional league.

Joe was proud of the fact that he got paid to be a company employee, but what he really did was play fastpitch softball for them.  In fact, he’d helped the team go all the way to the World Series of Fastpitch.

So on that day at the picnic, as Joe participated in our company’s softball game, I shouldn’t have been surprised to see him round third base and slide into home plate. 

In the process, he shredded a brand new pair of white shorts and got a huge raspberry on one hip.  When I asked him “why” he slid into home, he simply said, “I could have been out.”

That was the first time I understood just how competitive Joe was, and how important sports were to him.

Fast forward to this year—we’re now living in an “Over 55” community  and apparently, there are many other senior guys with Joe’s same love for a ball field because they have created a “very senior” and “very” slow pitch softball league.  (It’s quite the big deal, with a nice field, electronic scoreboard, uniforms, and a schedule printed in the newspaper, the whole megillah.)

Last week, Joe and Al and I went to one of their games.   We sat in the stands and ate popcorn just like at Wrigley Field in Chicago.

As I mentioned, this is a very senior league.  The average age within the community is somewhere around 74.5, and there are guys with all types of physical challenges.  They even have pinch-runners if you can’t make it around the bases.

I sat there and thought Al (this lousy disease) is the only reason that Joe can’t just sign up for a team, and get out there and do something he would totally enjoy.  It’s all Al, nothing else.  I suddenly wished I could push Al off the stands.

Without this disease that is robbing Joe of his mental and emotional flexibility he could take a pitch, run the bases, and field a ball with the best of them.  There would be no stopping him. 

It frustrates me to think about how many things Joe has had to give up.

But then I remember how much Joe enjoyed watching his grandson, Joey, play baseball.  During a trip to Las Vegas this fall, Joe was so proud of Joey when his team won the whole tournament.

Joe got so excited that at one point during the final day of the tournament, our daughter had to remind him that if he didn’t stop chiding the ump, he might be thrown out of the park.  And, there were those little conversations Joe had with the team manager in between games where Joe imparted his vast wisdom. (I’m not sure I want to know exactly what Joe and Al said to the manager.)   It was pure delight for Joe to be there.

I guess that’s what happens in life.  Sooner or later you have to come off the field and sit in the stands and cheer for the generations that come after you.  (I usually don’t like sports analogies, but this one “hit it out of the park”.)

We try not to grieve over the things that are lost, but enjoy what we still have while we still have it.  After all, as long as you can remember even some of what you once did, you can still brag.

Tomorrow is Friday, “TGIF” or “GIFT” if you are dyslexic like me.

By the way, our daughter just called to announce that grandson, Joey, who is still a high school junior, just made his “varsity” baseball team.  Way to go Joey!!  There's that bragging thing.

ALZHEIMER'S--DRIVEN TO DISTRACTION

Joe with our rental car in Paris 2002

When I was a child, my father was the driver”. 

Oh, my mother had a driver’s license; I mean she could drive a car, but only if “The Driver” wasn’t in the car.  That’s just the way it was. 
(I know what you’re thinking but remember, this was back in the 50’s and 60’s.) 

After Joe and I got together, and even though I’d driven since I was 16, for the most part when we were together, he drove.  I stood my ground on most equality fronts, but wrestling for the steering wheel just wasn’t on the top of my list.

Joe was a good driver.  He always knew where he was and where he was going.  He could get back to anywhere he had ever been.  He would say things like, “Remember when we were in Washington on Hwy 14, and we took Hwy 97 across the Columbia River to Biggs Junction?”  I wouldn’t remember the names of any of those roadways.  With our car’s navigation system I might be able to get there, but without it things could get sketchy.

So in the winter of 2013, when Joe and I had a conversation about driving and whether it might be time to hang up the keys, it didn’t go well.

By then, I could see that Al had started invading Joe’s concentration, making it harder to manage his reaction time and judgment behind the wheel.

In Joe’s mind, he still had plenty of driving ability; after all, he’d never had an accident that was his fault.

That was true.  Joe and Al had never wrecked the car.  Well, there was that little thing with the garage door and forgetting to open it and driving the golf cart into it, but that wasn’t really a car accident. 

I came up with reasons why I should drive.  Joe was a better navigator and map reader.  I was ten years younger meaning my reflexes were naturally faster.  And of course, I’m the world’s worst backseat driver, so if I drove, he wouldn’t have to deal with all of the drama I created for him. 

It didn’t work.

So, I played the guilt card.  (I’m really good at guilt.)  What if Joe (with Al in the car) wasn’t entirely alert and had an accident and wound up injuring someone?  How would he feel? 

He thought about it and finally admitted, “Well, I don’t think I could live with that.”

That winter I drove to Southern California with Joe as navigator.  And even though the car had a slick navigation system, he sat with a map unfolded in front of him so he could track the route and do all the things a good navigator does (whatever they are).  That was okay with me.

We stopped for a night at our daughter’s home.  I mentioned that Joe was “thinking” about NOT driving anymore.  She looked at me, smiled, then turned to her father and picked up the drum beat. She agreeing it was time.  

That was all Joe needed; the full support of a daughter he loved and trusted. 

On, January 17, 2014, he said good bye to the driver’s seat. 

Sounds pretty easy, right?  No.  This was the beginning of the transition.

People don’t think much about driving and the freedom it allows.  We were both accustomed to jumping in the car whenever we felt like it.  You need something, you drive to where it is and get it. 

But if you have one driver and two people with different agendas, it requires compromise. (Al does not like compromise.)  Driving is no longer a shared responsibility, it’s my responsibility.  I can’t say, “You pick up the dry cleaning and I’ll go to the grocery”.  It has taken time for us to switch gears and adapt to a “car pool” mindset. 

It’s been a year now since Joe started buckling up on the passenger side, and another year with Al.  Occasionally, Joe still gets frustrated at being “chained to the table” or “hand-cuffed” or some other “Al” inspired metaphor describing his lack of freedom.  But I think we’ve adapted.

We traded in the mighty SUV and bought a car that better suits my size.  (no more running jumps to reach the seat and get in the car.)  And, now that we’re down to one car, there’s more room in the garage (to store junk).

We’ll never know if Joe could have driven longer without an incident.  He still thinks he could have, but I heard him tell someone recently that “it just wasn’t worth the risk” to find out if he was right.  

Good for you, Joe.

I’ve got to hurry up so I can drive Joe and Al to the library.  It’s got a large print section, and Joe’s decided to read all 30 books by John Grisham. Oh, for goodness sake!

ALZHEIMER'S--FOGGY WITH SUN BREAKS

Joe on the Columbia River in 1991

January 26, 2015

The other day, I stumble into the kitchen (as I typically do first thing in the morning) to find Joe at the counter, his head in his hands.  (He had awakened several hours earlier, and has just been sitting there.) He looks at me and I can tell something is wrong.  I know it probably involves Al.

“Are you okay?” I ask.

“No! I’m not”.

He makes a muddled attempt to explain what’s going on in his head, and after several minutes, I finally understand he’s describing fog, the same kind of dense fog we had experienced back in Portland, Oregon. 

In the early 90’s, we were living in Portland in one of the remodeling jobs we had just finished.  It was a house high on a cliff overlooking the city; a real jewel.  On a really clear day (something as rare in Portland as a unicorn) we could see Mt. St. Helens perfectly framed in the front window. On those days, everything sparkled like it had been Photoshopped. 

But, on a more typical foggy, rainy, drizzly day the view was completely different.  It was grey, almost entirely grey, and hard to distinguish any outside scenery at all.  It felt like we were hanging from the clouds and overlooking a featureless urban sea.  We knew we were up on a cliff above the city, but with the fog we couldn’t tell much of anything else.

 On this morning in Arizona, in Joe’s fog, he has the unsettling feeling that the world might have fallen out from under him; that he might just float away (set aloft) like Carl and Russell in the animated film “Up”.

I sit in the kitchen with Joe and we talk, and wait for the dreadful feeling to go away.  I think, “What if it doesn’t go away?  What if Joe and Al do just float away into the fog?”    (Whoa, that’s not a good thing to dwell on.)

We get on with our morning routine.  We don’t make a big deal about it. We just turn on the fog lights, and slow down a little, and wait for our clearing. And, after a good cup of coffee, (we love coffee in the morning) Joe’s fog slowly begins to lift. 

 
The weatherman in Portland used to use the phrase “Foggy with Sun Breaks”, that’s what happens.  The sun breaks through and Joe lands right back on the bar stool in the kitchen.  The day is good, not Photoshop good, but good.

The thing is:  Some days are just going to be better than others.  There’s no pattern to it that I can see, no forecaster, no Doppler radar to help us.  We just have to maneuver through it.  We probably won’t see a “SHARP TURN AHEAD” or “AL CROSSING” sign until we are on top of it.  (Well, you don’t need to have Alzheimer’s to “not see it coming” so to speak.)

We’re learning to live with uncertainty.  That’s an interesting thing because life is never certain.  We just didn’t think much about it before Al rang the doorbell.

I suppose not fearing uncertainty is a good thing.  Being too cautious might have stopped us from taking risks that ultimately resulted in some of the best experiences we’ve had together.  (I’m not talking about bungee jumping.  I mean making a decision when you don’t know whether the outcome will be wonderful or go seriously, “AL” style haywire.)

I spent some time today pondering our Grandson’s upcoming wedding.   I’ve offered to help plan and make part of the décor.  It may seem crazy taking on more responsibility, but I need that.  We need that. We need to think about things other than how Al is fogging up the view.  We need to celebrate life and the futures of those we love. 

Oh, Al is going with us to the wedding, there’s no leaving him home.  It will be Joe and Jane and our “plus one”.  We plan to dance and laugh and enjoy our family.  And, we will have cake. 

Joe always did a great rendition of “YMCA”.  I wonder if he remembers the Macarena.  Ay yai yai.

ALZHEIMER'S--TIME FLIES WHEN YOU'RE REPEATING YOURSELF

Joe and I at Grandson Bryan's Willamette University Football Game in 2013

Back to 2012, and a Trip to the Hearing Specialist:

“Hearing Aids?”

 “So you think Joe has hearing loss, and we should buy hearing aids. Okay, how much are they, I mean for the really good ones?  Holy Cow! That much?” 

So we bought hearing aids, tiny little devices with batteries that were no bigger than that suspicious-looking age spot on the back of my hand.  Well, it turns out that with “Al” helping Joe, neither of them could get the things working and in Joe’s ears.   I’d walk by the bathroom door, and Joe would be on all fours searching for an itsy-bitsy battery dropped on the floor.  Over time it became contentious, with me insisting he wear them and him refusing.

That was back when we still didn’t understand it really wasn’t just hearing loss, but something far more serious, and another part of our Al problem.  I don’t remember when I stopped nagging Joe about the hearing aids, but I stopped and now the little buggers just stay in the box. 

It has since become routine to repeat virtually everything.  I can picture it in my head: 

Joe hears me speaking…Al starts doing the “la, la, la” thing in Joe’s ear, which totally frustrates Joe.   Joe then replies in an annoyed tone, “WHAT”.

 I get irritated at his tone, purse my lips and then start repeating myself.  This is particularly fun in a restaurant or a crowded room.  Sometimes I feel like we are doing a bad imitation of Abbott and Costello. 

Yes, I am making light of this.  What else can we do? We can’t change what is happening.  

I said, “We can’t change what is happening”.

I’m getting really good at guessing games and interpreting the clicks and whistles Joe uses to finish sentences.  It’s like Al is hacking into Joe’s brain, systematically deleting certain words and messing up files. And it isn’t just files in Joe’s brain.  Last week, a folder was removed from our office file cabinet in the garage.   We have no idea what happened to it, but it is completely missing.  Mysterious.

This week, I got a call from a longtime friend that we hadn’t talked to in a couple of years.  He had read my blog, which was the first he had heard of our Al problem.  (Of course he had seen earlier symptoms.) We talked for quite a while just catching up.  Finally he asked if Joe knew that I was writing the blog, and if so was he okay with it. 

That’s a good question. 

The answer:  Yes, I think Joe is somewhat relieved to have people really “get” what is happening.  It must be hard to feel that something is going sideways with your mind and try to conceal it from people you know, and even people that you don’t know.   We’ve been in a restaurant ordering dinner and had a server simply ask, “What would you like to drink?”, and I’ve seen the desperate look on Joe’s face realizing that he absolutely cannot come up with words like “non-alcoholic beer.” It’s still humiliating for him when it happens, and he tries to cover it up as best he can.

We both understand that having “Al” in the house, so to speak, is not shameful.  Alzheimer’s is just a cruel disease with a random need to destroy.  If we just give up and lie down, Al will run over us and we’ll wind up with tire marks on our foreheads.  

So we’re exercising, eating healthy, and laughing as much as we can.  It may be a short term strategy, but for right now it’s working.  All the little things, the ones that used to drive me crazy are really “mox nix”.  (Well, that’s an exaggeration.  The crumbs under the kitchen table still set me off.)

I miss the planning and plotting for house flips, and Joe reminding me that we’re over budget, again.  I miss those long conversations about life and kids and work.  I miss arguing with Joe about why he shouldn’t run for political office and why I could never be a politician’s wife.  (Don’t get me started.) Those were the things that made us a couple. The thing is, I can remember that couple and sometimes Joe can’t.

I think memories are possessions that you don’t think about until you really can’t think about them.  Think about it.

I’m going to the grocery this morning.  I’ve got to remember to buy Joe a comb.  They keep jumping out of his pocket.  I wonder how many times a day most people say the word “remember”. 

ALZHEIMER'S--THE UNINVITED GUEST--January 13, 2015

About this Blog:    

My name is Jane and my husband of 34 years was diagnosed with Dementia/Alzheimer’s about a year and a half ago.  (Of course, his symptoms began much earlier.)  This blog is a tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in.

 I clearly didn’t make a living as a writer. In fact, I am dyslexic, which makes writing an interesting challenge.  My career was in business management.  That fed my purse, but to feed my soul I was an abstract artist, designer, and an actor and director in Community Theater.  I can find humor in most things.  To me, life is a comedy and is better set to music than tears.  But, I also know that sometimes life can be a dark comedy.  Someone said to me once, “Don’t you ever take anything seriously?” The answer, “Not if I can help it.”

I titled this first entry “The Uninvited Guest”, but my blog will really be “The Adventures of Joe and Al and Jane”.

The Uninvited Guest, January 13, 2015

When did he arrive?  We aren’t sure.  It started seven or eight years ago with little things, you know, that ding on the golf cart that we didn’t seem to know how had gotten there.  Or, the spill on the carpet that wasn’t there yesterday.  How did the garage door open itself and stay open all night?  What would cause my husband to out of the blue say something outrageous to the neighbor?    (I frequently coached him on improving his interpersonal skills.) And then, there was the screwed up checkbook that had once been managed with the precision of a drill sergeant.  

Things like this happened over time, slowly and mysteriously.  And, there was the kicker last year--Why would anyone get up at 1:30 in the morning and walk up and down the sidewalk looking for the newspaper?   “Houston, we have a problem."

Things had been good.  My husband (Joe) and I had raised kids and retired from successful careers. We had settled into well-deserved “bonus time”, just what we had planned and talked about on those precious Friday nights after work.  We had conquered the world, we had made it.  Well, that’s what it was like before “Al” showed up.

At first, Al would only stay for a few minutes, just long enough to disrupt and cause trouble like a high maintenance teenager. And then, he would be gone.  I would breathe a sigh of relief (no need for panic).  But as the months went on Al started joining us for social events and popping up at odd hours.  The longer Al stayed, the more confused Joe became. 

 Al made it hard for Joe to concentrate or find the words to finish a thought. To me, Joe had always been “the smartest guy in the room”, but with Al around, he was slowly becoming disconnected and quiet. 

Friends began the wonder what was happening.  I would jokingly say something like, “Well, he runs out of words by about 4:30”.  The truth, Al was now clearly getting in the way.

Not knowing how to get rid of Al we sought help.  We saw specialists.  They ran tests and asked lots of questions and eventually gave us the news that Al would be staying, invited or not.  We would not be able to ignore him.  

Let’s be clear about this, I love my husband, but Al, not so much.  Apparently, no matter how many things we try or how many websites we browse, there are no magic answers; we will still have an Al problem.

They said we will just have to live with Al, adapt.   We can’t lock the doors and move to another zip code (although we tried that). He will just catch up to us carrying a bigger suitcase. 

So we will be living with Al.  He reminds me of the guy in the TV commercial, you know, Mayhem.  They may be related.  Chaos, disorder, bedlam.  Yep, Al and Mayhem have got to be brothers. Just when we think things have leveled out, we might be back in control, things are working, Al tangles the garden hose, loosens the lug nuts so to speak, and shows us who is really in charge.  

Right now, today, Joe is winning.  He has Al tied up in the garage next to the Subaru and the extra bottled water.  We both know Al will escape and be mixing up Joe’s medications, screwing up the remote control, promoting Joe to forget what we talked about this morning and causing me to mumble. But for right now….we are okay.

Today, while we were at the gym I caught Joe’s eye.  He was across the room trying hard to work out and be normal and I smiled and stuck my tongue out at him.  He stuck his tongue out right back at me and I laughed and thought, that’s my Joe, he is still in there.

Sigh!  I think tonight we’ll have pudding for dessert.  Tomorrow we’ll pick oranges.