ALZHEIMER'S: THE ALTERNATE REALITY

The Alternate Reality

I looked at the calendar today to realize it’s already the middle of January.  Wasn’t it just New Year’s Day a couple of days ago? I feel I’ve lost time somewhere.  I guess that’s what stress does, makes you lose track of time.

I’m having trouble getting past something that happened Wednesday of last week (at least I think it was Wednesday of last week). 

Joe and I were having a routine early afternoon, Joe napping as I putter in the kitchen.  I hear the sound of a chainsaw, which I think must be the gardeners trimming the beautiful palm that graces the common area in front of our home.

 

I decide to say hello to the gardener so I head out the front door, making it only a few steps before I see his workers have cut the tree in half.  With no prior notice—no warning at all—they have just destroyed the tree. 

I run into the house to get my phone and call the person responsible.  The noise I’m making wakes Joe from his nap, and he follows me back out to the yard just in time to see the workers wrestling the tree’s carcass to the ground.

By now there are several people surveying the “crime” scene, and quite a lot of noise.  I’m upset over the loss of the tree and for having been too late to stop it from happening but by the time the person responsible arrives, it has become a catastrophe in Joe’s cognitively altered mind.  In fact, I have never seen him quite so agitated and angry about anything.  It is the first time I have feared he might completely lose control of himself.

I guess looking back at what happened, I shouldn’t have been surprised by the level of Joe’s distress.  I know since Al parachuted in the parts of Joe’s brain that control emotion, reasoning, and problem solving have been disrupted but, until this incident, I hadn’t seen such an extreme manifestation of it. 

Considering all of the elements involved, what happened last week was a perfect storm, a recipe for trouble within the Alzheimer’s mind; the disorienting noise of the chain saw, loud conversations happening faster than comprehension allows, an abrupt awakening.  It would be hard to concoct a worse situation for Joe.  It was the mother-load for overstimulation, enough that it would take him several days to recover.  (Mostly he just slept.)

As a caregiver, I try hard to protect Joe from trouble spots in our environment, but I know that’s unrealistic. Stuff happens.  A while back I dropped a pan on the tile floor in the kitchen and was surprised at Joe’s extreme reaction.  I had to remind myself that when he processes a loud sound, there is a lag between hearing the sound, interpreting it as something harmless (not an explosion), and being able to relax again.

When people hear the word Alzheimer’s, most will immediately think of memory loss (forgetting words, names, or events).  That certainly is a big part of it but there are other losses that may be equally difficult for a person, and their caregiver, to cope with.

 

Imagine losing the ability to perceive time or the passage of time, looking at a clock and not being able to understand how time is moving. It sabotages your ability to plan, to be on time, or even to know if you’re late.  You might get up the middle of the night and, thinking it’s morning, start breakfast, or turn on the shower. Or worry about being late for an appointment that is actually scheduled for many hours later.  It doesn’t take much to understand the stress that would create for your spouse/caregiver.

I should be careful talking about losing perception of time.  Based on what’s been happening lately, maybe I’m the one that is losing her perception of the passage of time. 

Come to think of it, I’ve been at odds with time my whole life.  When I was a child time wouldn't move fast enough.  Years later, after I'd worked for 25 years, I used to say that I didn’t need more money, I just needed more time; time to do the things I wanted to do…time to be with my family…time to rest and enjoy what I worked so hard to get…time to think and plan…time to create.

Here I am now wishing I could roll time back; go back to the time before Al stuck his nose in our business, before all the craziness and worry, before we started down the rabbit hole with Alice (really Al) into the alternate reality that is Alzheimer’s.

“If I had a world of my own, everything would be nonsense.  Nothing would be what it is, because everything would be what it isn’t.  And contrary wise, what is, it wouldn’t be.  And what it wouldn’t be, it would. You see?”  

                            
The Mad Hatter

Lewis Carroll, Alice’s Adventures in Wonderland &

Through the Looking Glass

ALZHEIMER'S: The Slow Tsunami

Joe chillin in the breeze February 2015

Life is short but, we all know that.  So unless you’re a plastic bag, which I’m told will endure on earth for 400 to 1000 years (although having only been around since the Thirties, no one really knows for sure), at some point we all must face getting older and eventually, the end.  I’m reminded of that when I rewind the events of my life so far.

Around the time I was a toddler, Eisenhower was our President, going head to head with Khrushchev.  Jonas Salk had just developed the polio vaccine, and Korea had split in two.  Howdy Doody was my daily entertainment, and Elizabeth became the Queen of England.

By the time I was an adolescent, Elvis Presley was rehearsing his gyrations that would soon cause my parents to turn off the television.  Castro was thumbing his nose at Kennedy while at school we practiced civil defense drills.  I dreamed of being on American Bandstand, wished I had a dog like Lassie and lived in Mayberry eating Aunt Bee’s cookies with Opie. 

  

Personal computers, cell phones, space rockets and even coffee makers are the wonders of my lifetime.  I remember when hair dryers were as big as Barcaloungers, and I strongly believe Perry Mason could have gotten a conviction in the OJ Simpson trial.  But that’s just me.

Many of us Boomers are preparing to or have already retired.  We’ve officially handed the world to the next generation’s care.  Or have we?

I read recently that in the US there are over 5 million people struggling with Alzheimer’s or other dementias.   Approximately two-thirds of their caregivers are women, and 32% are over the age of 65. That sounds like a big chunk of Alzheimer’s care that is still being provided by us old Boomers.  And by the way, there isn’t a pay check.

You’ve probably heard the term the “Silver Tsunami”, referring to our aging population and its predicted impact.  I suggest that term also describes the wave Alzheimer’s caregivers see in front of them today.

I sometimes wonder when the Alzheimer’s Silver Tsunami will get to us.  When will Al overtake Joe to the point that Al’s won, and Joe is left broken, adrift, and unable to find himself? One of the hardest parts of being a caregiver is not knowing the “when”.  And since this disease can affect all aspects of the body, there can be other things happening in Joe’s body that I might not be able to see.  So it isn’t just the “when”, it’s also the “what”.

Last week Joe’s doctor called with the results of his latest lab tests and to schedule more tests.  This time it’s kidney function.  We’re just finishing with the skin cancer, and now it’s his kidneys.  Before that it was spinal issues and of course it’s always diabetes.  (I’m glad that I don’t understand more about human anatomy; it would surely only give me more territory to worry about.)

We have pills and medications for everything and specific times they must be administered.  I’ve become robotic in their dispense.  Maybe that’s what I need, a robot specialized in Alzheimer’s care.  I’d name it Hal.

“Hal, check Joe’s blood glucose level.” 
“Hal, prepare Joe’s insulin”.
“Hal, remind Joe to get on the recumbent bike”.
“Hal, it’s time for Joe’s pills.”
“Hal, remind Joe to drink water”.

That all sounds a bit far-fetched but back-in-the-day who would have thought that we’d have drones that could help locate someone lost in a forest, or take unflattering photos of the Kardashians 200 feet above their back yard?

I don’t know…It seems to me that a soft touch or a hug and a kiss are such big parts of caregiving, we could never be replaced by robots.

Today I pulled up an email I’d saved titled, Alzheimer’s Caregiver’s Resources.  It was sent to me back in early November by a case manager from the clinic where Joe’s doctor practices.  I had delayed reading it until after the holidays, noting the dozen or so files it included.  There are files on Caregiver Support, Caregiver Vouchers, Adult Care Support, Personal Care Agencies, Government and VA Agencies, and multiple application forms, all of which overwhelm me.  Each one will require hours of attention, and I’m not sure where to start.   I really have to force myself to do this.

I’d so much rather curl up beside Joe and take a nap.

ALZHEIMER'S: A YEAR IN THE LIFE

Joe and I in Las Vegas 2015

January 13, 2016 will mark the first anniversary of this blog.  Yes, it’s been one year since I decided to “go public” or “come-out-of-the-closet”, so to speak, with our journey into the world of Alzheimer’s.

I wasn’t sure it was the right thing to do, if writing a public blog would somehow become an embarrassment or humiliation for Joe and for our family.  I didn’t know how people would react to so much openness about our struggles; would they think I was trying to garner sympathy or just indulging in our troubles?  Would writing about my life provide psychological relief, or would it make things worse?

I have always been able to see the humor in life’s experiences (good or bad) and laugh about them.  But Alzheimer’s is serious business.   Would I offend readers by making light of all the craziness that comes with it?  

There were no clear answers to any of these questions. 

I decided I would have to focus on my own experiences with this disease, to speak solely from the point of view of a caregiver.  I would never be able to feel what Joe was feeling, hear what he was hearing, or see what he was seeing, much less capture it in print.

I also knew that there would be things that I just couldn’t share and, there have been many. 

 

Every day has brought contradictions to what I thought I knew and inconsistencies that create a paradox in my thinking.  I’ve often questioned what I write, fearing I might be in denial or becoming paranoid.  Are things really the way I think they are?   (This disease can often play tricks on the caregiver.)

With that said, here we are, with 31 posts hanging out there in the vastness of cyberspace.  So I asked myself, “Would I do it again?” 

The answer is simply, “Yes.”

There have been many positives that have come from writing these posts.  But one of the most surprising has been Joe’s reaction to them.  They have become “his” posts as much as they are mine.  He’s read every one (although I now read them to him), and seems to gather satisfaction in the fact that people better understand his struggles with Alzheimer’s.  By personifying the disease as “Al” it’s helped Joe see his disease as something he can fight while trying to hang on to himself.  It isn’t just a clinical description, it’s Al, and even Joe knows Al sometimes needs a kick in the butt.

The posts have kept us connected with a world of friends and a community that stretches around the globe to over twenty countries.  The feedback from that community has been a bright light into what can sometimes be a dark and hopeless pit. 

And, finally, I’ve enjoyed writing the posts.  It truly is cathartic.  I feel stronger by openly sharing and expressing what it’s like to be a caregiver for a spouse living with this disease.  That strength helps me swim against the current in the Ocean of Alzheimer’s.  I feel you are all here with us, ready with the life boat and a hug.

So, Happy New Year to our family, friends, readers and fellow caregivers around the world.  May you find hope and the strength to bear your own struggles, whatever they may be.  I’ll keep posting and have little doubt that there will be plenty to write about and, maybe even a few chuckles.

“Challenge yourself with something you know you could never do, and what you’ll find is that you can overcome almost anything.”

Anonymous

Okay, here is one of my favorite Alzheimer’s jokes…

There was an elderly gentleman who was suffering from Alzheimer’s.  His wife of 40 years loved him very much, but couldn’t handle him any longer.  She took him to a memory care facility.  At the facility while she was filling out paperwork, a nurse had the gentlemen sit in a chair.

Suddenly the man starting slowly leaning to his left.  The nurse ran over and put a pillow on his left side to prop him up.  A few minutes later, he started leaning to his right.  Again, the nurse ran over and put a pillow on his right.  Then he starting leaning forward.  This time, the nurse strapped him into the chair.  About this time his wife, having completed the paperwork, walked up to him and asked, “How do you like the place?” 

“It’s okay,” he said.  “But, they won’t let me fart!”

(Joe really laughed at this one.)

P.S.  A special thanks to my editor Kathleen, who’s helped build my confidence to write.

ALZHEIMER'S: SANTA MEETS AL THE GRINCH

Joe as Santa Claus in 2004

I have always loved Santa, ever since the first time I met him.

 

It was Christmas Eve, 1952.  We were with our extended family, celebrating and feasting much like the generations before us.  (Well, mostly my sister and I were jumping up and down, way too excited to eat.)  Then there was a knock at the door. 

Daddy stood up, “Now who could that be?”  He headed for the door but stopped. 

“Why don’t you two get the door?” He was looking at my sister and me.

Now, I was the youngest person in the house and never allowed to get the door but he nudged me forward. “Go on, you get it.” 

The room grew quiet. We looked at Mother who smiled, nodding her approval. My sister and I opened the door and there he was, Santa.  I can still picture the scene; the beard, the red suit, the bag, a big hug, and just like the stories said, this jolly old man (who I now strongly suspect was my Uncle Cleo) instantly mesmerized me.

Some 50 years later, I recreated the same scene for some of our grandchildren.  Only this time Santa was Grandpa Joe, fully decked out in a suit I’d spent weeks creating. That year Joe donned Santa’s gay apparel for several holiday events.  He really rocked it with his deep baritone version of Ho, Ho, Ho. 

Joe still tells the story of a little blonde girl who spotted Santa from across the room, came running for him at full tilt, jumped onto his lap and hugged him.   He calls her little Janie when he recounts the tale, imagining me looking like her at that age.

The years have passed and now of course we spend Christmases with Al, “The Grinch”.  He isn’t into holiday festivities and doesn’t see the point of all the exuberance most of us exhibit.  His apathy and shrinking enthusiasm is like a virus, infecting our spirit and robbing us of the kind of joy we experienced in Christmases past.  Gone is the pleasure Joe once took in sneaking away to shop for the special gifts, those quirky, interesting and unconventional things that delighted us.

 

This lack of spirit isn’t just the normal fading of wonderment that sometimes comes with aging, the kind that can easily be cured with a little mistletoe, eggnog and the right company.   It’s deeper, down to the core.  Al has replaced jubilation with confusion, apprehension, and anxiety.  He’s made everything harder, more complicated.

“You’re a mean one, Mr. Grinch!”

But this year, I’m fighting back.  We aren’t leaving anything up to Al.  We have a plan.   It starts with the tree and a few outdoor lights (we don’t see many of those in our senior community.)   Next, Joe and I will go shopping together and try to find unique and distinctive gifts that express the joy and thankfulness we feel for those we love.

I’ll bake cookies and Joe will help. Then we’ll deliver them to the neighbors.  I’ll break out the Christmas music and play all of our old favorites.   Even the Grinch should know the words to Bing Crosby’s White Christmas.  We’ll move at a slower pace and maybe spread things out a bit but, this year there will be joy, even if we have to tie Al (that Grinch!) to the Christmas tree. 

Most especially, we’ll be thinking of all the other Alzheimer’s families struggling to hang on to Christmas and the ones they love.

-----------------------------------------

Joe’s daughter and family joined us a few weeks ago for the Thanksgiving holiday.  While they were with us our son-in-law, the electrician, helped with a couple of small home improvement projects. This of course meant a trip to the local big-box hardware store.

 

As we entered the store, just inside the door stood Santa, the greeter.   Having never lost my love of Santa, I gave him a big hug, welcoming him back and telling him that we had missed him.  I think my son-in-law thought I had lost my mind.  But as I said before, I’ve always been crazy about Santa.

Christmas shopping together 2015

May the season bring joy and happiness to all. 

  

ALZHEIMER'S: Happy Birthday From Al

Joe and I wintering in Arizona 2013

When I was a child, November was always my favorite month because it meant birthday presents and cake and ice cream.  There was only one problem. My sister’s birthday was just nine days after mine and because our mother was very thrifty, we celebrated our birthdays together, on one day with one cake.  I remember being upset and outright exasperated that Mother didn’t understand the seriousness of this issue.  After all, didn’t the word birthday mean birth-day, the day of one’s birth?

It was always a big decision as to which day we would actually celebrate “our” birthday.  Being practical and not wishing to favor one child over the other, Mother would choose a day in-between, a sort of neutral ground.  We carried on with this neutrality right up until the year my sister flew the nest and moved into her own apartment.  

Finally, I had a real birthday. 

But like many good things in life, the years passed and I no longer saw birthdays through the eyes of a child.  I began to dread them, realizing that they meant I was just another year older. 

One day my five year old niece came to visit and overheard me lamenting an upcoming birthday.  She leaned on my knees, looked up at me and very seriously said, “Aunt Jane, why would anyone not like birthdays?”

Touché!

A couple weeks ago, Joe and I sat at the bar in the kitchen eating breakfast.  Joe hadn’t said much, and was just about finished with his Cheerios and banana when finally I couldn’t stand it anymore.

“Do you know what today is?” I casually ask.

“What?” This is Joe’s automatic first response to all questions. 

“Do you know what day it is?” I repeat. 

He leans to the right, looks over my shoulder at the digital calendar/clock I bought so he can easily keep track.  “It’s November 3^rd, and it’s 8:45 a.m.”

I probe further. “Yes, that’s right, but what is this day?”, and more specifically, “Do you know what happened on this day?”

“I should know this, shouldn’t I?” He ponders the date.

Finally I tell him, “It’s my birthday.” 

He shakes his head and smiles, “I know that.” (I’m sure that if allowed more time he would have come up with it.)

I smile back. “You know what I’d like from you for my birthday?”

He looks at me with a worried stare, knowing that he doesn’t have a gift for me. 

“I’d like you to sing Happy Birthday to me.”

He sighs in relief. “I can do that.”  And he starts.  “Happy Birthday to you, Happy Birthday to you, Happy Birthday dear………..,” and he stops.   His eyes are now wide open and his expression turns to a slight look of panic.

I cackle, “You don’t remember my name?” We both start laughing.  He shakes his head telling me that he does remember it and starts in again, only this time he sings my real first name (which I do not use and will not reveal in this post).  More laughter.  

I suppose it shouldn’t have been a moment for humor but really, it was funny.  That laugh was as good as any gift he could have given me.

It’s impossible for me to understand how Joe copes with all the changes going on in his brain.  As much as I’ve studied this disease, I still understand only a very small part of what is actually happening to him and can barely imagine how it might feel. 

I follow a guy on Twitter, a journalist and author from the east coast, Greg O’Brien, who himself is struggling with Alzheimer’s.  He’s written a wonderful book titled, On Pluto: Inside the Mind of Alzheimer’s.  This week Joe and I have been reading it together and boy, are there many “aha” moments.  It’s a first-hand account of O'Brien's own disease process written with humor, faith and journalistic grit.  I would highly recommend this upbeat and insightful read.  (Check it out on Amazon.) 

  

We’re having several visitors over for the Thanksgiving holiday and we’re really looking forward to it.  I’ll likely talk their leg off and they may be sorry they came but, right now I don’t care.   I’m just happy to have the company.  Besides, the guest bathroom remodel is complete so we’re all ready. 

Our little project took longer than I’d planned, and our multiple trips to the home improvement store were a bit overwhelming for Joe.  Once again I’ve confirmed that the key to managing with Al in the family is maintaining routine, routine, routine.  Any variations have impact and even the simplest of changes can sometimes derail Joe and Al.  Picture eight days of “strangers” at the door by 7:30 in the morning with tools and materials in hand, coming and going, demolishing stuff with cell phones ringing, and you may get a sense of the problem.

Yesterday, after putting the finishing touches on the guest bath, I stood in the doorway, sighed and reminded myself that the result was worth the pain. 

Now, what else can I tear up.  Oh wait, I forgot, routine, routine, routine.

ALZHEIMER'S: HALLOWEEN WITH "AL"

Joe with Grandson Calvin in 1996

It’s Thursday morning, and Joe is still asleep.  He seems to sleep a lot these days.  I understand this is part of the changes his brain is going through, but I wonder if I should wake him.  We don’t have anything scheduled this morning so there isn’t any compelling reason.  Besides, he’s had a stressful last few days with the surgery, and all the stitches in his face.   I know it isn’t anything to worry about. He’ll recover soon, maybe even without much of a scar.  I’m just happy it’s over and the cancer is gone. 

If only there was a cure for Al that was this simple.

 

I can envision the scenario in my mind:  Joe rolling out of an operating room with several nurses attending.  They’re laughing and joking with him about the number they’ve just done on Al.  I rush to Joe and hover over him while he lies propped up in a hospital bed with his hands behind his head.  He’s wide awake and smiling and calls me “darling’” just like he used to.  I ask him if he’s in pain.  “No, but Al is a goner,” he tells me. “The doctor sent him right back to the devil where he came from.”  I feel a sense of relief that can only be described as pure joy.

“Are you sure? I mean, is Al really gone?”

Back to Reality

From the bedroom I hear Joe cough.  He opens the door, slowly walks into the kitchen, and sits at the bar.  

“Good morning Honey, would you like some coffee?” I ask.  He looks at me with that familiar “what did you say” expression, and I know Al is still very much with us.  I ask him if he slept well and he begins to tell me about little people that were coming at him in the bedroom.  I’m not sure if he’s telling me about a dream or it’s something he thinks actually happened.  The other day he told me he was being surrounded by people, all the while pointing to the ceiling. 

Seeing something that isn’t actually there is normal and harmless if you are a child with an imaginary friend, or you look up to see a face moving within the clouds, or maybe even Elvis in a potato chip.  But it’s a whole other thing if you’re living with Al.  Then it’s just another step in the progression, and indicative of things to come.  It’s quite a dichotomy because Joe can seem perfectly functional, seeing the same world that I see, but then without warning suddenly be at odds with reality.

We’ll have breakfast on the patio this morning.   The temperature is perfect, and because it’s a weekend there won’t be noisy jets flying overhead.  The only sounds we’ll hear are from the hundreds of birds searching for their own breakfast on the newly over-seeded lawn. 

Joe will spend a few minutes sweeping the patio, brushing away the little bits shed from the trees the night before.  This is one of the tasks he seems to enjoy and will do without coaxing.

Late October in the desert is the next thing to paradise, quite unlike what I remember as a child in the Northwest where rain dominated the season.  I looked at the calendar this morning, noting the upcoming Halloween weekend, and was reminded of the all the times I’ve spent making costumes.  I’ve created getups from May West to Zorro and Raggedy Ann to The Hulk.  Joe was never into costumes, but he would agree (as he would say, “just this once”) to participate.  I dressed up the poor guy many times.

 

There are few things Joe enjoyed more than seeing all the little kids from the neighborhood in their Halloween dress up.   Two years ago and just a week after Joe had been diagnosed with Alzheimer’s, we attended our daughter’s party as Popeye and Olive Oil.  I remember Popeye didn’t say much that night. 

That got me thinking about what costume I could create for Al.  At first I thought of something monstrous, with red eyes cloaked in a hooded cape like a vampire. Then I thought maybe more like a wolf, with long fangs. 

But on further consideration I decided Al should look like me, or you, or the millions of people struggling with the disease.  Because Al isn’t some scary monster that you can see.  It’s an insidious disease within that slowly tricks and robs a person of their self.  Visit any memory care facility and you’ll know what I mean.

When I think back on all the changes that have happened over the past two years--different state, house, car, life, really--there is one thing that is the same.  Joe and I still love each other and this Halloween, like all the others, we’ll have a bowl full of mini candy bars at the door.  We’re not likely to see any trick or treaters but if that’s the case, we’ll have plenty of candy through December.

Never lose your basket, hold it high

Look the world straight in the eye and then repeat “Trick or Treat”

Granddaughter Hannah, the artist

Joe as Zorro in 1994

  

ALZHEIMER'S: A STREAM OF CONSCIOUSNESS

Joe at Pebble Beach in 1994

It’s dark.  It must be at least eleven o’clock by now and it’s raining.  I don’t remember hearing about rain in today’s forecast.  We’ve been in the car for several hours, at least that’s how it seems.  I’m tired but I’ve got to stay awake, Joe might need help seeing the road.  These mountain passes are windy and narrow and I’m wishing we’d taken another route.

“Slow down!”  Why is he driving so fast?

Is it me or is Joe too close to the edge of the road?  Suddenly I remember:

“Wait a minute, why are you driving?  You have Alzheimer’s.  You haven’t driven for almost two years.  How on earth did this happen?  You’ve got to pull over.”

I realize the car is now in the air and I can feel the weight of gravity pushing us down.  It seems like we’ve been falling a long time.  The car lands on the hillside and we roll like a barrel down to the bottom of the canyon.  It’s odd but I don’t feel pain.  I don’t feel anything.

I awaken as the car jerks to a stop.  I sit up in bed and try to reorient myself. I squint to look at the clock.  It’s 3 AM, and I look over at Joe lying beside me and hear him breathing.  I fluff my pillow and lie down again but I’m not going back to sleep. I’m wide awake. Jeez!

It’s not the first time I’ve had this dream.  They’re not all exactly the same but they always involve Joe in the driver’s seat and me trying to get us stopped.  I’ll bet Freud could have told me why this is happening.  Maybe there’s an online source for dream interpretations that I could use to investigate this phenomena.

I remember going to get auto insurance when we first moved to Arizona, and how confused the agent seemed that Joe still had a valid Oregon driver’s license but would not be included on the policy.  The agent made me repeat to him several times that under no circumstances would Joe get behind the wheel. (I had the urge to be sarcastic and say something like, “Well, Joe won’t drive unless I’m really busy and he needs something important like ice cream.”)  Of course Joe wouldn’t be driving the car.  I may be blonde but I’m not stupid.

 

I think I’m developing an attitude.

A couple of weeks ago we were at the clinic to see Joe’s endocrinologist (the Diabetes guy).  This was our initial appointment and since one of the first words on Joe’s chart is “Dementia” I had expected a friendly, welcoming doctor whose communication would adapt to Joe’s situation.  This was not the case.  Even after asking the doctor to slow down and speak directly to Joe, all we saw was the back of the doctor’s head as he mumbled and focused on his laptop.  So much for bedside manner. 

As we’re leaving the appointment I ask Joe if he understood any of what the doctor had said.  Of course he hadn’t but, he tells me, he thought it might be that the doctor had been speaking another language.  Seriously!

Most people don’t understand that communicating with someone struggling with Dementia/Alzheimer’s requires a different way of communicating.  I tend to speak in stream of consciousness, a continuous flow of ideas and thoughts largely unedited, which doesn’t work for Joe.  All he hears is an unconnected, unorganized succession of words.  It’s taken me a while to understand this and remember that our conversations can’t flow like they once did.

Now when Joe and I talk, I first have to be a good listener (which I typically am not).  Then, I have to focus only on a couple things I need Joe to understand.  Asking several questions at a time will net an answer to none.  I have to admit, sometimes it feels a bit cramped and confined.  After a few days of only talking with Joe, I start to twitch.  I find myself “talking-the-leg-off” anyone who dares to call me, and frequently wind up apologizing for talking too much.  But I have to remember that there will come a time when I too may need a little more help and will appreciate someone making adjustments for me.  I’m not immune to any of this.

Last week, we saw Joe’s dermatologist, and as I’ve feared might happen with Joe’s fair skin and a childhood spent on a ball field without sun protection (not to mention years on the golf course), this visit involved a rather large divot taken from his cheek for biopsy.  As we’re walking back to the car I’m thinking this guy really doesn’t need anything else to deal with.  Enough is enough.

You may have noted that I didn’t mention Al at all in this post.  I’m refusing to acknowledge him.  I’m taking a break from Al.  But just in case he can hear me, “Al, you will not get us down.  No matter what you do or say to Joe I will outlast you because I’m durable and persistent”.  And, just to prove I’m in control, I’ve stopped eating pasta.  Now that’s attitude.

Joe at the ball park 2015