Monday, December 28, 2015

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.


Sunday, December 13, 2015

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. 

  














Friday, November 20, 2015

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 3rd, 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.

Friday, October 30, 2015

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

Sunday, October 11, 2015

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

Saturday, September 26, 2015

ALZHEIMER'S: THE SOMEDAY AFTERS


Joe down by the river 2015

I’ve always looked forward to the next big adventure, the next thing that would happen after completing whatever was currently in focus.  I call it the “someday after”.  Humans seem to be wired for the someday after.  How else would we be motivated and inspired to dream of the future if we didn’t manifest hope and optimism for what comes next?  It’s part of our DNA. 

Not once did I say, “Someday after one of us is diagnosed with a devastating disease.”  Thankfully, that’s just not the way most of us think.  Oh, we know there’s the possibility of bad things happening.  That’s why we buy health and life insurance and get regular checkups.   But with the life expectancy in the US most of us assume we’ll live full, long, mostly healthy lives.
 
In a perfect world, the someday afters would just go on until we’d enjoyed life to death.  (Yes, the pun was intended.) That isn’t the case if the Uninvited Guess (Alzheimer’s) shows up.

Let me introduce you to Al, the great disruptor.  He crept slowly and mysteriously into our lives, and in his sinister way began to chip at our someday afters.  He tries to turn optimism into apprehension and hope into fear.  He fogs the brightness of the future and conspires to make us focus on the worst aspects of things.  He is at his best when we are at our lowest.  He is an undisputed creator of pessimism.

So how do we fight what is so essentially evil and destructive to our someday afters? How do we find ways to restore a disposition that looks on the brighter side, to be hopeful, to be our ambitious selves?

I’ve never understood the whole “bucket list” thing, where people who sense their mortality suddenly develop a fever to experience things that may have been suppressed or delayed.  Joe and I have been working through our “bucket list” for over 35 years and I can assure you that when we started, we weren’t thinking about mortality.

We’ve had wonderful adventures together and individually; like the time we were living in downtown Portland, Oregon after building a loft apartment out of an old warehouse (that was truly an adventure).  And there was the time Joe fulfilled a dream to play in a pro-golfer like tournament in California.  He still talks about the fabulous golf courses he played.  His hole-in-one story may live on forever with as many times as he’s told it. 

I was fortunate to have my own art exhibits and to act in and direct community theatre productions.  We gratefully became grandparents eight times.  There was travel to other countries and unforgettable (well I thought they would be unforgettable) experiences.  The point is, we’ve already done most of the things that would have been on a bucket list had we had one.

What would really restore our outlook, and would be worthy of being at the top of any bucket list we might have would be to surround Al, hog-tie him and throw him in the briar patch.  But, since we don’t have a briar patch and a cure for Alzheimer’s is still in the future, we’ll have to be content to focus on things more practical. 

For now that means shortening the horizon, refocusing the lens and thinking less long term.  In that respect, I’m actually mirroring Joe’s new way of thinking.   I’m not saying that I’ve stopped considering the longer term future but, I don’t know what life will be like a year or two years from now.  For that matter, no one does.  I just have to get used to living with the uncertainty that Al dragged in.  It all reminds me of a famous Yogi Berra quote, “If you come to a fork in the road, take it.”

 So the question is:  How can we be happy in the here and now?
 
Well, each week we’ll assess our status and decide what’s going to work over that amount of time.  It may be something as simple as going to the golf course and hitting practice balls (I sure wish Al could swing a club).  Maybe it’s buying tickets to a local theatre production, or having a glass of wine with a neighbor.  Whatever it is, it has to be something that we can look forward to and is manageable within Joe’s current abilities.   (Of course, if you asked Joe he would vote for a trip to Baskin and Robbins.)

The times they are a changin’.  Thinking less about the future may just be a good thing.  For now, our someday after doesn’t need to be any further away than the day after tomorrow.

Last week, we had a new roof put on the house.  The noise and disruption could have created problems for Joe and Al but it turned out to be a non-event, except for the ball cap that one of the workers left on the roof.  Joe spotted it and was pretty sure that if I held the ladder he could get up on the roof and get it.  There’s that confident ambitious Joe I miss so much.

Joe with daughter Juli 2014

Saturday, August 29, 2015

ALZHEIMER'S: TAKE THE WHEEL AND DON'T LOSE YOUR GRIP


My Dad in 1949


People who know me won’t be surprised to hear me say I was a Daddy’s girl.  As a child, I spent many hours in the workshop with Dad.   It wasn’t just tinkering, we always had something important in process, some project to finish, some new thing to create.  He was a great teacher of how to do things and not be afraid to fail.  If something didn’t work right the first time, he just tweaked it until it did, until things fit. 

Back then I had no idea I was learning skills that would serve me well into my adult life.  I remember being in the orchard watching Dad drive a tractor, and out of the blue him pulling me up onto his lap in the driver’s seat saying, “Here, you take the wheel.”  It was thrilling.  We drove through rows of trees and I bobbed up and down like a cork, trying not to lose my grip on a steering wheel that was as big as I was.  “Hold on, you can do it,” he shouted, “now turn the wheel!”  And so I did. 

I was only about six years old at the time, and quite small for my age. But on that day I really thought I drove that tractor; I took the wheel and didn’t lose my grip.  I told everyone about it, that I could drive a tractor.

Over the years, that kind of confidence has been important to me but never more than it is now.

Joe and I had always shouldered life’s decisions together. We had a “what do you think?” relationship, with a lot of conversation about possibilities before big decisions were made.  We trusted each other’s judgement and really used our collective experience to our advantage.  I’m not saying that we always agreed with each other.  Good heavens no!  I remember having lively discussions about a lot of things but, in the end, we’d come to an agreement and we appreciated being able to collaborate. 

Things began to change after Al (the Great Disruptor) arrived. I’m now feeling the full weight of decision making; like what happened last week as I contemplated a new roof.  While I’m in the kitchen talking with a contractor and planning how to approach the roof replacement, Joe is sitting in the living room reading, not really tuned in to what is happening.  In the past, Joe would have been right with me asking questions, gathering details, and figuring out the costs.  (I used to call him the human calculator because he could do the math faster without a calculator than I could using one.  Sometimes it was downright annoying.)

It’s not that I can’t make decisions, or put plans in place and go with them. It’s that I don’t like our life being driven solely by my decisions.  As Joe’s caregiver that’s really what it amounts to, I decide what’s good for us.  Some days it’s a little daunting and there are times when I feel intimidated in the knowledge that if I make a mistake it affects both of us.  And, of course, I’ll be the one sweeping up the mess.

Okay, let’s keep this in perspective.  There are single parents all across the country who are managing families without a partner’s support.  I’m not talking about financial support (although that is often the case), I mean lacking an emotional and intellectual “partnership”, going it alone.  That’s got to be harder than what I’m experiencing, especially when young children are involved.  I have a husband who loves me, and if not for his struggles with Al, he would be right by my side helping me figure all of this out.

It’s times like this that you draw in a breath and dig down deep to who you really are, and remember the things you learned from the people you trusted. I had wonderful parents who made me strong and independent.  There were mentors that coached me, friends that encouraged me, and things that challenged me.

If I close my eyes and listen, I swear I can hear my dad’s voice from a distant corner of my mind, telling me that I can do this and to not give up or fear the unknown.  So, I guess I’ll climb back up on that tractor, take the wheel and get a grip.  I may bounce a bit going down a road that’s not well paved but, I CAN DRIVE THIS TRACTOR.


Image result for free pictures of tractor steering wheelsNow, how do I shift gears on this thing? 

Tuesday, August 11, 2015

ALZHEIMER'S: 20/20 HINDSIGHT

Joe and Jane (without Al)  in 1987

 It’s easy to be knowledgeable about events after they happened, but sometimes very difficult to catch things as they unfold.  I guess that’s where the old axiom about 20/20 hindsight comes from.   

I always thought of myself as insightful, with keen instincts and maybe even a little intuition, always able to analyze situations and draw conclusion without reams of data.  In my career, that was what I got paid to do.  So why did it take me so long to understand what was happening with Joe cognitively?  Why didn’t I connect the dots earlier?  It isn’t as if Al just showed up one day and said, “Here I am!”  There were signs, lots of signs stretched over several years.  In hindsight, we were tripping over them.

In the course of educating myself about this disease (Al), I’m seeing a common theme, and it isn’t just denial or the “ostrich syndrome” (sticking your head in the ground rather than accepting some uncomfortable facts).  It’s more complicated.  It’s more like working on a 1000 piece puzzle without the aid of its picture.  I’m going to call it “BLEAP” (Blocked Logical Early Al Perception) syndrome. (And yes, I just made that up.)

If you have BLEAP like I did, you may see lots of little pieces of Al but never a complete enough view to connect things.  I’ve spent some time thinking about this and how I might help others in a similar situation benefit from my hindsight.  I know it’s dicey to think I can save someone else pain by sharing my own experience (it doesn’t work all that well with childrearing).  But I’m willing to give it a try.  I also know that everyone’s path through this disease is different.  I haven’t attempted to create a diagnostic guide, these are just my own observations.  I’m not Dr. Gayer. 

I’ve learned that Al isn’t just a memory disease, it’s a brain disease that affects every aspect of your being.  Researchers now believe that changes in the brain may start as early as 10 to 15 years ahead of any symptoms.  They’ve developed a set of seven stages to describe the symptoms and progression of the disease.  I believe Joe was in Stage 1 up until about 2006.  During this period he had no notable symptoms.  He was just Joe, my Joe.

In Stage 2, symptoms may be very subtle, with only mild forgetfulness.  In Joe’s case, the changes just seemed to be normal aging.  His social skills and mood underwent changes, but again, only in hindsight would I have thought them to be abnormal for his age.  After all, I had never lived with anyone as old as Joe (I had to get that one in). 

There were subtle changes in Joe’s logical thinking and ability to do things in a sequence.  Anything that required assembly took longer to accomplish but still, nothing that would have sounded an alarm. This stage went on through 2009.

During Stage 3, symptoms showed in Joe’s inability to solve problems or learn new things, and in planning tasks.  Social skills and temperament began to be more of an issue.  He stopped enjoying playing cards with friends, and there were problems with his patience level on the golf course.  It was during this period that driving and judgement also began to be problematic.  It was 2010 that he drove the golf cart into the garage door, twice. 

More memory issues occurred but Joe was able to compensate to the point that he could hide it from most people.  He obsessed about being on time; his calendar was never far from his side.  (I now understand that it’s common for people with high intelligence to find ways to compensate and mask early memory issues.)  Joe began struggling to find the right words and finish sentences.  He started disengaging from group conversations.   I would characterize Joe as having “grumpy old man” syndrome and maybe needing an attitude change.  He seemed to judge quickly and grow more negative, which was not “the normal” Joe.  This went on through 2012.

Early in 2013, I started questioning what was really happening with Joe but still hadn’t connected all the dots.  About that time I was doing community theatre; Joe was spending more time at home alone watching TV.  It seemed like he wanted to be alone, like he didn’t miss me.  I noted changes in his posture and gait.  It was harder to get his full attention, and I thought his hearing must have worsened. 

Joe had always managed our personal finances and paid household bills.  He started making errors in the checkbook, sending checks to the wrong places or sometimes forgetting to enclose them all together.  In the summer of 2013, after a couple of incidents on the golf course and several weeks of him getting up in the middle of the night thinking it was morning, Joe finally agreed to go to the doctor.  I believe it was about this time (mid October 2013) that he moved into Stage 4.

It is in Stage 4 that most people who have the disease are diagnosed and sometimes misdiagnosed.  In Joe’s case, there was little doubt about his diagnosis.  And, you guessed it, this was the point where my own BLEAP syndrome cleared up completely.  Completely!

So here we are, slowly moving into Stage 5. And this is where I’ll stop, because I would no longer be writing with the voice of experience.   We aren’t through this yet, and I won’t be trying to turn the pages faster to get to the ending.  There will be a cast of characters that we’ve yet to see and the plot will twist and turn.  I’ll take notes and try to help with any BLEAP syndrome that might be out there.  That’s all I can do.

Someone pointed out to me that my blog has less humor and isn’t as lighthearted as it started out. I think that’s true.  I’ll have to work on that, because there are humorous things that happen every day. Sometimes they just don’t extend to the fingers on the keyboard.  Like this week, when Joe put on his pool shoes (yes we wear pool shoes) and forgot to take off his socks before he got in the pool.  I
could have written about that.  Well, maybe it wasn’t that funny, maybe you just had to be there.

Oh well.  I think the coffee is ready.


Sunday, August 2, 2015

ALZHEIMER'S: THE EDGE OF REASON

Joe at the edge of the Canyon June 2015
 

The word edge typically means the place or line where something stops, but if I say I'm on the edge of my seat you know that I'm ready for something, I'm anticipating something.  I'm also edging if I move carefully, gradually, and inch my way.  If I have an edge I might have an advantage that makes me successful, or I could just be upset or angry.

It's very hard to reply on words when they can mean so many different things, yet we're stuck with them.  Language, whether written or spoken, is our single most important form of human communication.  Or it is?

If you take away words or the ability to understand words, can you still communicate?

Several years ago Joe and I spent a month on the island of Curacao in the Caribbean.  We rented a villa that came complete with a Polish cook, housekeeper, and butler (quite a treat for us).  Only the butler spoke English.  A couple days into our stay, the cook tumbled down a flight of stairs and broke her leg.  I was the only one there when it happened, and of course I speak no Polish, Dutch, Papiamento, or any other language other than English (I'm not proud of that).

In spite of having no words with which to communicate, I managed to get us to the hospital, complete a complicated insurance process, and describe the incident to the doctor.  Consequently, the cook got treatment.  Back home in Oregon, as I was telling this story to my daughter she said, "So Mom, when did you learn to speak Polish?"  Of course I didn't.

That was the first time I really understood that words sometimes aren't necessary.  If you don't have words, you just do what it takes to communicate.

I was reminded of this after Al moved in and words began to fail Joe.

At first Joe struggled to find the right word.  Then the right words started to go so he began substituting words that had similar meanings; "patient" might became "client" or a "steering wheel" would come out "driving circle".  If I listen intently and patiently (which I sometimes don't) we still do fairly well with these creative modifications.

Occasionally no words come to Joe, so in that event he goes with whistles or clicks combined with hand gestures, and generally still manages to converse.  You might not know this, but a twirling index finger and a left side nod of the head with raised eyebrows means, "Where's the restroom?"

A while back I read that when caring for someone struggling with Alzheimer's, touch is a very effective way to communicate.  It's true.  I start the morning with a big hug for Joe and before we've spoken a word I can sense his mood.  If I get a "leave me along" response, I know he's had a rough night with Al and I'd better give him a little extra space (maybe another zip code).

A couple of months ago I started trimming Joe's hair and beard, for no other reason than I like doing those kind of things for him.  (Well, that's true, but it's also because going to the barber shop is no longer a pleasant undertaking.)

This week while doing the trimming and shaving I noticed something interesting.  Joe really enjoyed his "spa" experience.  He relaxed and just let me pamper him.  In fact, he relaxed so much that I had to keep reminding him to sit up straight fearing that he might just fall off the bar stool.  In a non-verbal way, I was able to communicate to him that he is okay, that he will be loved and cared for no matter what happens next.  I can say those words to him, but he might not understand at such a deep level with all the other Al chatter going on.

There may be a good definition of the term "the edge and reason" but to me it means reaching the point where logic and reality become thin, cracked, and brittle, and you know that you'd better watch your step in a fragile or unstable environment.  If you're nearing the edge of reason you move carefully, inching your way along.  Since Al seems to have two left feet we know that if we aren't careful he might step into something and pull us over the edge with him.

Words are flimsy and inadequate to describe how happy I am that Joe is here on this side of the edge of reason, looking ahead at it still in the distance.

This week we celebrated Joe's 77th birthday but, just like two kids on summer vacation, today we're off to the pool with noodles in tow.  We're quite a picture.

Sunday, July 19, 2015

ALZHEIMER'S--THE ART OF LOSING

Joe and Al at the gym June 2015

My Inner Self:  What are you afraid of?

Me:  I’m not sure I understand the question?

My Inner Self:  Yes, you do. You know exactly what I’m getting at.

Me:  I’m not afraid of anything.

My Inner Self:  I can feel when you’re afraid. You start getting tense and your breathing changes.  You did it just this morning at the gym, remember?

Me: I was working out.  My breathing always changes when I’m working out.

My Inner Self:  Yeah?  I think it was more than that.  I think you were worried about Joe and Al.

Me:  Why would I be worried about them?  We go to the gym all the time.

My Inner Self:  You’re worried about how much longer Joe will be able to manage the gym with Al.  You noticed how much trouble he had this morning getting the recumbent bike going.  You watched him wipe it down over and over to the point that people around him noticed.  You thought he seemed more confused than usual.

Me:  Oh, that was very helpful.  Thanks for pointing it out, as if I need to be reminded.

My Inner Self:  Hey, I know it’s tough.  Watching a loved one go through this isn’t easy.  Remember who you’re talking to.

Me:  Great, now I’m talking to myself.

I suppose all caregivers go through internal struggles like this.  We try our best to stay positive and find a brighter side, but when you see the lights dimming for your partner, sometimes you have to look really hard and squint a little to see that brighter side.

Joe tries to hold on to things but the “Magic Eraser” is hard at work, relentlessly changing our lives one little loss at a time.  Sometimes things are gone without me even realizing.  The other day Joe tried to fold a towel and it was as if he had never done it before.  Now, folding laundry is something Joe has helped with for 35 years.  I know that sounds trivial, but it’s an example of how subtle the changes can be; one day you can do this simple little thing, the next day you can’t.

Yesterday I pulled up iTunes on the computer, plugged in my earbuds and sat by myself to watch the film “Still Alice”.  I had wanted to see it but had been stalling, unsure if I would feel better or worse after watching it.

It turns out I very much liked the film.  I appreciated the authenticity of the portrayal of a person struggling with Alzheimer’s and its impact on the family.  It reminded me that what we’re experiencing isn’t unique, that we’re not one-of-a-kind.  I’m not sure why I find that comforting but I do.  Anything that helps me keep perspective has to be good, right?

I certainly understand why Julianne Moore won an Oscar for her performance.  I was particularly struck by a scene where Alice gives a stirring speech at an Alzheimer’s Association symposium.  By now in the film she is displaying significant memory impairment.  With great care, she quotes from the poem by Elizabeth Bishop, ‘The Art of Losing’:

“The art of losing isn’t hard to master; so many things seem filled with the intent to be lost that their loss is no disaster.”  

The art of losing…I really had to think about that.

From birth to the end of life we’re gaining or losing something.  I once had a doll that meant the world to me, but I grew up and now I have no idea what happened to it.  There was a point where I could do a one-handed cartwheel and “to the floor” back bend.  Gone!  Really gone!  Joe and I spent almost two years remodeling a beautiful house high on a cliff, then sold it and moved to another city.  It brought me to tears then, but now I rarely think about it. 

In the large scope of things, who cares if Joe doesn’t remember what he ate for lunch, the word vitamin, or how to spell spaghetti (that one always gets me, too)?   It’s unimportant whether or not he ever finds his fancy blue socks or the sunglasses he lost last week.  It’s all right if he reads a book but the next day can’t tell me what it was about. If he can no longer operate a cell phone or a remote control or drive a car, our world won’t end.  I‘m not going to worry too much about any of those things.  There will be many losses, there always have been.

These days when people ask me how Joe is, I have a standard reply, “Oh, he’s okay, about the same, just more memory stuff.”  What I really should say is, “He’s lost a little more here and a little more there, but he’s okay.  He still has a lot left.”


By the way, I think I’ve become addicted to the computer game, “Words with Friends” (the cousin to Scrabble).  Ever since my daughter told me she spelled a 111 point word I can’t stop.  I’ve been staying up late madly spelling these obscure and ridiculous words, sometimes with people I’ve never met.  I may have to find a support group for my new affliction.

Saturday, July 11, 2015

ALZHEIMER'S: TRAVELING WITH THE GIRL SCOUT



I’m sitting here in front of my computer trying to write an entry into my blog and thinking to myself, “Why does this seem so daunting?” 

Grandpa Joe and Hannah in 2000
It isn’t that I lack material.  Since I last wrote we’ve had several “adventures with Joe and Al and Jane”.  Well I should say, “Joe and Al and Hannah and Jane”, because our granddaughter from Oregon just spent 18 days with us, four of them traveling in a car together. 

You’d think words would just spill onto the page.

The problem is I don’t want my blog to be a travel log. You know, we saw this and we saw that, which of course we did.   I’d rather write about how a sixteen year old and her grandparents coped on an odyssey with Al (the uninvited guest).  

To tell this story I have to go back a few years. 

Hannah is the second child in our daughter’s family.  We had delighted in her birth just as we had with all the grandchildren.   As a baby she had serious separation issues, and we had disastrous babysitting attempts where she cried inconsolably until her parents returned (heartbreaking sobs).  Just a couple years later we watched her weep again, this time because her brother was headed to Oregon with us. Being too young for such a long trip, she had to stay in Montana with her parents (another wrencher).

After Hannah’s family moved back to Oregon Joe and I settled into the grandparent role with frequent visits and stay-overs.  One of my most cherished memories is the time she was transfixed by Santa Claus, a fully costumed Grandpa Joe (whom she didn’t recognize).

But here we are, just over a decade later.  Hannah’s childhood will soon be leaving the station, so to speak, and with Joe’s progression with Al, this might be the last time such a trip is possible.   We’ve mentally prepared Hannah for the summer heat in Arizona but, being a true Oregonian, there is some fear that she might just self-combust.  

Hannah had certainly met Al before.  But for the most part it was while Grandpa Joe was more or less still “in charge” in the early stage of the disease.  Al could be quite pointed with the grandkids when the noise level got too high for him.  And, there were some issues with cannon balls in the spa.  But as long as there was order to things and the guest room didn’t get too messy, Al stayed out of the way. 

Hannah’s since become very savvy about Alzheimer’s. But it’s one thing to know about Al and a whole other experience to live with the changes he’s created.  I wasn’t sure how she’d cope.

I’m happy to report we all survived.  The actual time in the car, though long, turned out well with Hannah and Grandpa Joe switching time as co-pilot.  In fact, she was a big help to me in many ways, especially keeping us on course by interpreting the car’s navigation system.

I still don’t understand how kids today are so adept at all this.  It’s like they come out of the womb preprogrammed for it.  When I was a kid traveling with my parents the most important thing was to be sure I didn’t throw-up in the car. Sometimes I didn’t even succeed at that.

I think Hannah would agree that Al truly complicates travel.  Getting from place to place and things like ordering food just take longer.  I’d look at her and we’d smile as Grandpa Joe grappled with choices.  She seemed okay with our slower pace, showing little reaction other than an occasional look of dismay when she realized she’d gotten half a block ahead of us. 
 
We stopped one night in Las Vegas.  I knew there wouldn’t be much there for someone Hannah’s age but I wanted her to see all the glitz.    We unfortunately became part of the summer crush, the whole town packed in like sardines.  Maybe it’s the ten years of Girl Scouts training she’s had but she was a trooper guiding Grandpa Joe through it.  Even without Al tagging along it would have been overwhelming for anyone with a handicap. 

That was emphasized again on our trip to the Grand Canyon…yes the Grand Canyon.   I know I said no travel log, but I have to say how truly awesome it was seeing it for the first time.  I would also tell you if you are in a wheelchair you better bring lots of friends. After pushing Grandpa Joe halfway around the South Rim we were both exhausted (me more than her).  At one point, sitting on a very hot and over-crowded shuttle bus, I feared we might have stumbled into one of the “Griswold” family outings.

There were many things on our trip that Hannah might have enjoyed more with people her own age.  I’m sure there were times we seemed tediously humdrum (after all we are senior citizens).  But I think she knows how truly grateful we are for the time she shared with us. 

Hannah has now flown off to California to visit her newly-wed brother and sister-in-law where there will be excitement filled days and late nights, kind of the yin and yang, a compliment for forces completing the wholeness of her trip.

 I already miss her.  I just hope that in her life our “Al” is the only “Al” she ever spends time with.