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.