ALZHEIMER'S: A PATH OF UNCERTAINTY

Joe's Imitation of Hemingway

It’s been a busy and difficult week, one I created myself but nonetheless, frustrating.  I spent most of the week trying to refine a care plan for Joe with serious attention to alternatives.  Not that things have changed greatly, but we know more now than we did almost three years ago when we started down this uncertain path.

Back then our plan was simple and probably naive.  After all, we had no first-hand experience with Al; we were still reading basic definitions of the disease, shaking our heads trying to understand what this monster was all about. 

We realized without long-term health coverage, costs could soar. We would need to down-size, cut expenses, and ready ourselves for the long haul.  I would be Joe’s chief caregiver so he could stay in our home.  If his care required more than I could manage, I would hire in-home services to fill the gaps.

Way back in the Middle Ages when I was working in high tech as a Project Manager, one of my jobs was “alternative planning”, a “what ifs” approach to managing risk in case bad stuff happened to original plans.  It’s like the old adage, “don’t put all your eggs in one basket”. You need a plan that leaves room for change if (or more likely when) things go sideways.

So I applied that same thinking to our care plan.  If at some point down the road Joe needs more care than either I or in-home care services can provide, we would look at (I can barely type the words) institutional care. 

This is when the tears well up.  Of course, institutional care isn’t what they call it.  It’s called a “memory care center” because that sounds much nicer. Last week I visited several centers, but I’ll only talk about the best one. Frankly the others are too upsetting.

I’m greeted by a very personable woman (I’m thinking young for this type of work).  We walk through what is clearly a new building with contemporary art lining the corridor like an upscale hotel.  We go through a double door entry where she presses a button and we await permission to enter a lockdown facility, made to protect the people inside from the real world outside. 

Someone in scrubs greets us as we enter a large common space lined with sixteen private suites decorated with front porch facades.  My guide explains they try to mirror the feeling of home, allowing each resident to furnish their own space.  To my right is a brightly colored room filled with a doll house, coloring table, various primary books and stuffed animals.  My first impression is that it’s a children’s daycare, but I’m told it’s a living room where residents can amuse themselves. 

Back in the common area several residents sit in club chairs in front of a fireplace.  My guide speaks to one of them, a frail woman with snow white hair, asking permission to show me her room.  I notice she’s petting a cat that’s sitting on her lap; as we pass, I see it’s actually a stuffed animal. I smile and thank her but she doesn’t speak.   

It’s a good sized room with a private bath and many personal items.  The guide tells me residents often put something outside their door to help them find their own rooms.

We continue to the back of the common space passing a man sitting at a large communal bar busily working with paints, creating his version of a Picasso.  We pass through another security door to an outdoor space encircled by a tall iron fence.  There are patio chairs and shaded areas and I hear a waterfall in the distance. I’m told the nearby raised vegetable garden is tended by residents.

The final stop in the tour is a dimly lit media room with stars projected onto the ceiling and a very large water bubbler to promote relaxation.  One wall is covered by a big screen television monitor proudly described as a new feature allowing residents (with considerable help) to view their picture files and even Skype with family.

I know much thought and consideration has gone into the planning of this nice facility.  But any way I slice it…I don’t want Joe to go there.

As we finish the tour, I ask about costs and am provided a sales brochure with center page titled “Supplemental Charges”, noting room rates beginning at $5,530 per month for basic services.  

With the predicted inflation of health care costs over the next five years those services could easily rise to $8,000 per month.  I’m told the average resident lives five to eight years in such a facility.  Do the math…I don’t know too many families that can sustain such costs.

I have the urge to shout, “WHY ISN’T SOMEONE DOING SOMETHING ABOUT THIS?”  It’s impossible to think 5 million families in the US are up against this.

I’m going to write letters to my Congressmen and Senators.  I’m going to submit articles to the Op-Ed section of the newspaper.  We’ve got to attack and defeat Al before he bankrupts our nation.  This isn’t some politician’s rhetoric, it’s a real and present threat with the generation of Baby Boomers who will soon be lining up for “Memory Care Services”.

Deep Breaths...

I’m going to calm down and get back to alternative planning for our life with Joe and Al at the edge of uncertainty.

Joe with daughter Juli

ALZHEIMER'S: THE ART OF CAREGIVING

One of my Brussels inspired pieces 2002

As an Artist I know that inspiration comes from many directions and sometimes when you least expect it. 

Years ago, a good friend and I took a train from London to Brussels for a quick weekend excursion.  Up until then, all I really knew about Belgium was that it was smack-dab in the middle of Europe and was famous for beer, waffles and some of the finest chocolate you could buy.  But what I found, and should have known, was that Brussels has a strong cultural heartbeat with unforgettable art and architecture.

We checked in to a hotel near the Grand Place, the most memorable landmark in Brussels.  While I waited for my friend to come down from her room I strolled through the hotel’s lobby, and that’s when it happened.  I turned a corner to find myself in front of a long (and I mean long) black granite wall.  (It must have been 10 feet high and 30 feet long, all granite.)  In the center of the wall was a sculpture; a monumental assemblage of wood pieces, objects that individually might be recognized for their simple utility, but collaged together became a fabulous, spellbinding piece of art.

I’m not sure how long I stood speechless in front of the sculpture, but it was long enough that people began to notice.  Someone from the hotel staff asked if I was alright.  Of course, I wasn’t.  I had just been entranced, hypnotized by this piece of art. 

When my friend arrived I babbled and stared at the wall, trying to explain how it affected me.  My friend managed to pull me back and we sat down while I tried to compose myself.  I didn’t want to leave, I wanted to remember everything about the piece, which of course was impossible.  I couldn’t wait to get back to my little studio and experiment with this style of sculpture.

That year I created several like sculptures, one so large it required reinforcement of the wall prior to its mounting.

Thinking back to the days I spent gathering objects, hammering, sawing, painting and arranging them into art (which I enjoyed far more than anyone else seemed to appreciate the final results), it got me thinking about how similar that process was to what it takes to create an exacting care environment for someone with Alzheimer’s.

I’ve said before that being a good Alzheimer’s caregiver isn’t just a job, it’s an art.   It requires much of the same dedication, resourcefulness, execution, and persistence that it takes to create art.  By that I mean just like the collage of the sculptor, there are little bits of this and pieces of that, trial and error in finding things that fit, and skill in applying them and knowing when you’ve gotten it right.    You can’t overthink it, or spend too much time worrying about what you should have done.   Because the next day when you start again, things will look and feel different and you’ll pick up the process at whatever point feels right.

I’m grateful that I have a mind that allows me to create.  I’m proud that I can feel empathy and have compassion.  And I’m happy to say that I continue to find inspiration to help us along our Alzheimer’s journey.

This week inspiration came in two forms.

The first was in the form of a national loss.  Nancy Reagan passed at the age of 94.  For ten long years, she provided unwavering love and devoted care for her dear “Ronnie” through what she called, “the long goodbye”.  She was a powerful advocate for Alzheimer’s research and remained, inspiringly, “First Lady of the Fight” to the end.

Bon voyage, Nancy.

The second inspiration was from a book titled, Somebody Stole My Iron, by Vicki Tapia. Written from the perspective of the caregiver, it is an account of the author’s personal journey caring for her mother and father as they descend into the sometimes bizarre world of dementia.  Poignant and tearfully humorous, Tapia captures their story with hope and courage while offering well experienced words of advice.  A good read.

So, I’m fueled up for the next several weeks which should get us through Spring Training and tax season.  It may not however, be enough of a stimulus to get me ready for swim suit season.  Maybe there shouldn’t be a swim suit season when you ‘re 67.

Oh, well.

Joe and I Spring Training

ALZHEIMER'S: WELCOME TO THE CLUB

A day at the Museum with our daughter February 2016

It’s early March, not at all what I would call spring but here in Arizona the warm clear days have convinced everything to sprout.  I’ve just finished planting petunias in our garden pots. Looking up, I notice the orange tree is starting to bud.  My hands are black from the potting mix so I wash them with water from the hose and wave to the gardener as he rushes by on his riding mower. The smell of freshly cut grass floats in the breeze behind him.  Ahh.  It’s as though Mother Nature is telling everything to wake up and renew.

I’m feeling hopeful and optimistic, partly because of impending spring but also because our daughter Natalie just spent a week with us.

She didn’t bring a potion with her that had some supernatural effect (besides, the airline wouldn’t have allowed it on the plane anyway), but she provided a special infusion of optimism, just what we needed.

Like most mother-daughter relationships we’ve smoothed off the rough edges that accumulated during the early years of mothering, childhood, and adolescence, and have gotten to a place where we enjoy each other as equals; two adults with a strong love and respect for each other, and many shared goals and objectives.  It’s a good, strong, defensible place to be when Al decides to join your family. 

At one point, as we talked about what lay ahead for us, Natalie said very matter-of-factly, “Mom, you just need to know that I’m on your team.  I understand how hard this is and I want to help”.

How lucky I am.

While she was here, we took the opportunity to refine our care plan and met with a Memory Care Navigator from Sun Health Foundation. Marty, a very personable advisor--and a sort of coach—helped us understand and connect with available support resources, spending an afternoon with us mapping out a “plan of attack”, one that helped provide the push I needed to seek support.  So, last week, Natalie stayed with Joe while I attended my first group support meeting.

It was a gathering of about seventeen people, all of whom are caregivers for spouses or other family members in various stages of the disease; a few more women than men but fairly representative of the community.  I mostly listened, feeling too new to the group to interject my own thoughts. 

  

I was particularly struck by one woman.  The topic was managing the isolation that can come with Al.  I believe she was providing care for her mother (but that isn’t central to my point).  She said she tries to find time to do kindnesses for other people (not just her mother) and that by doing so she derived more happiness for herself. 

I think I know what she was saying.  It was like baking Christmas cookies for the neighborhood last year.  It felt good to do something for someone not involved or focused on our own woes. 

Awhile back Joe and I were shopping at a local craft store when an elderly lady in an electric cart drove into a display case sending its contents rolling down the aisle.  I stopped and helped pick things up for her and stayed while she struggled to compose herself.  I remember feeling good as Joe and I left the store.  Could it be that doing a kindness for others (not just for the loved one you routinely care for) helps you stay balanced overall?  Maybe it’s like pouring a fuel additive into your gas tank, it keeps your engine running better, especially if you’re a high mileage engine, like me.

At any rate, I plan to keep going to the support group meetings and will just see how things develop.  It was a good start.

Having Natalie here also got Joe and I out of the house and doing things we might not have tackled without help, like going to the Phoenix Art Museum, which Joe very much enjoyed.   (We almost had to pry him away from the Michelangelo exhibit.)  Having a wheel chair has made a big difference and greatly expands our range, so to speak.  Now when Joe’s unable to walk we can still keep going.

I know there will always be stress in caring for someone who isn’t as psychologically present as they once were and there will be many times that Al will try to tackle us, knock us down and take our lunch money.  But we’ll just get back up, dust off, and be on our way trying our best to have “joy along the journey”. One thing I know for sure, life is better spent with laughter than tears.

“Hi, and welcome to Alzheimer’s Club.  The first rule of Alzheimer’s club is…….Oh Hi. Welcome to Alzheimer’s Club….”

ALZHEIMER'S: WHERE YOU ONCE WERE

Joe and I Valentines Day 2016

I’ve always enjoyed interacting with young children.  There’s something fascinating about the freshness of their little minds, uncluttered by conventions and bias.  I love their wide-eyed wonderment and innocence. A kind of purity of thought, unfiltered and unobstructed, and free from the experiences that will later shape the lens through which they view the world.  Their preciously short childhoods are the beginning of a long walk through life, and so there’s good reason for us to say, “Enjoy them while they’re little”.

Human development is defined as “the biological, psychological and emotional changes that occur between birth and the end of adolescence; it’s the transition from dependency to increased autonomy, a continuous process with a predictable yet unique course for every human”.

As I read this rather clinical definition of human development, I was struck by how similar it was to a definition of dementia.   In fact, if I change just a few words I would have that definition.

“Dementia is defined as the biological, psychological, and emotional changes that occur between the onset of the disease and the end of the disease process; it’s the transition from autonomy to increased dependency, a continuous process with a predictable end, yet a unique course for every person”.

Okay, before you stop reading this and fear you’ve just stumbled into a Psych 101 class, let me tell you why I would choose to write about this.

Every so often I find some truth about life that seems totally ironic to me.  This is one of those truths…that the development path of the human brain is very similar to the path of its destruction through Alzheimer’s disease, experienced in reverse.

Several years back a short story written by F. Scott Fitzgerald was turned into the film, The Curious Case of Benjamin Button, starring Brad Pitt and Cate Blanchett.  It was a romantic fantasy centered around a character (Benjamin) aging in reverse.  By the end of the story he is chronologically 84 years of age, but has become physically a child.  There’s a scene toward the end of the film where a bewildered social worker stands over his crib and tells his love interest (Daisy) that he’s displaying signs of dementia.

It’s hard to wrap your mind around such a fantastic tale, but there are elements of the story that sound a bit like Al should be showing up in the credits; the erasing of abilities that Al does is like rewinding parts of your life back to where you’ve already been, before you could do what you later did.

In the brief moments when I can set aside my emotions about what Al is doing to Joe, I can look at the disease process with some amount of fascination and marvel.  It truly is incredible to consider that if stored on paper the computed memories in the brain might literally fill a warehouse (well, mine might only fill a U-Haul).  But if that’s the case, how could what has taken a lifetime to accumulate be so easily disrupted, damaged and destroyed?  How can Al be so efficient at bringing a person back to their beginning?

It’s a question I’m sure is perplexing for anyone dealing with Al and unfortunately, there’s still much to be done before there’s an answer.

Today was “doctor time”, a trip for Joe and Al to see the Neurologist.  Joe’s doctor is a personable sort of fellow from Minnesota, with a strong hand shake and friendly smile, the kind of guy you’d want as a brother-in-law.  But he has a very small bag of tricks to deal with Al and he’s almost apologetic about it.  He knows there isn’t anything he can offer us that will change what’s happening.  Maybe he can help slow the effects of the disease for a while, but as he tells us that’s about all we can expect.  The rest is up to us, well, really up to me.

My role is to keep Joe as physically healthy as I can while providing a safe and stimulating environment for him…. not an easy task.

I need to get Joe out of his chair and keep him awake during the day, which will allow him to sleep at night and keep him from wandering around the house.  I may have to set off the smoke detector for this one.

I can always blend spinach into a breakfast smoothie to get him to eat vegetables or add blueberries to his cereal.  I might be able to convince him that there is some nationwide ice cream shortage as an excuse for not buying any.  But keeping Joe’s mind stimulated requires cunning and something other than endless hours of watching television. Maybe strip Scrabble could be the solution.  Today it was miniature golf without keeping score….whatever it takes.

ALZHEIMER'S: Better Homes & Guardians

Joe at 65 before Al showed up

I used to be an adventurous cook, before Al showed up with his bland palate and convinced Joe to dislike almost everything.  I’m not saying I was ‘Wolfgang Puck’ or ‘Julia Child’ adventurous, but I enjoyed experimenting with new recipes and trying different cooking techniques.

Occasionally, I’d get in over my head with something that was beyond my culinary experience.  I’d see a recipe in Bon Appetit that looked pretty straightforward only to find myself midway into the process discovering it was not, in fact, straightforward at all; there’d be some exotic ingredient I’d never heard of (and had no idea where to buy), or some required kitchen gadget I’d never even seen before. 

Well, that’s a bit like where I am now, trying to provide for the needs of a spouse struggling with Alzheimer’s, with no straightforward recipe that if I just follow, can make things turn out right.

Two years ago, when we first got the diagnosis and Joe was in the early stage of the disease, I remember naïvely saying something about my ability to handle anything.  I had experience. I knew how to plan, execute and control things.  Right?

Wrong!

I’m not sure anything could have prepared me for the complex and frustrating world of an Alzheimer’s caregiver.  Everything I thought I knew—about motivating, inspiring, or stimulating certain behaviors—should be boxed up and mailed back to Norman Vincent Peale because I’m here to tell you that the rules in Alzheimersville are different.

That doesn’t mean I’m ready to give up, throw in the towel.  I still love Joe and am just as dedicated to him as I was before we started down this road.  I’m simply saying this is hard; hard to see the changes and accept the losses, hard to see the distortions in his reality and to see him slowly disconnecting.  And it’s impossibly hard to accept that no matter what I do or how much I try, I won’t be able to stop it.  I don’t have the recipe for a good ending…there is no recipe.

I have the advantage of being basically a positive person, which makes me hopeful and able to see the brighter side of most things.  But, there are times when negative thoughts invade my psyche and I see Al hovering overhead like a dark cloud ready to drench me.

 

That’s typically when something inside tells me, “Keep your balance. Stay focused.  A little negativity isn’t a bad thing.”

That’s right.  If I’m traveling on an icy road trying to decide if I should stop and put on chains, it’s a good thing to consider the possibility of sliding off the road.  I suspect you would find plenty of carnage behind anyone with Pollyanna Syndrome, because the fact is, “All things will not have positive outcomes, no matter what.”

With that said, I have something to confess.  After the holidays, I began to notice things in my behavior that I didn’t like, things uncharacteristic of what I’d call my “normal”.  I’d stopped putting on makeup in the morning, and doing my hair had become less important.  Getting out of the house seemed like a chore and I avoided returning calls.  There were days when I just didn’t care that Joe refused to get out of his pajamas, or that the laundry was piling up and there were crumbs under the kitchen table.  I found myself snapping at Joe for little things like not putting his dish in the dishwasher or leaving the light on in his closet. 

A light on in his closet, really?  With all the other issues we have around here, I’m chastising Joe about leaving a light on?  What’s wrong with me?

And then it hit me. I was depressed.

The one who rarely takes anything seriously and prides herself on being well balanced was depressed.  I’m embarrassed to admit it because I didn’t think people like me got depressed.  I’m the one who whistles a happy tune and gets going when the going get tough.   But all of a sudden (well maybe not so suddenly) it was like gravity was pushing down on me and I couldn’t lift it off. 

  

I know what you’re thinking, “Alas, pity dost not become thee.”  You’re right, I didn’t need pity, and I didn’t need a shrink to confirm my symptoms.   What I needed was a way to overcome that depressed feeling.  So this week, I refinished our master bath cabinets.  It might not be what anyone else would do to overcome depression, but for me it works.  By focusing on a new project it allowed my mind to refresh.  And, any time I make something more beautiful it raises my spirits and gets the old creative juices flowing.  Once that happens, all the other stuff just seems more manageable.  I’ll call it my “Better Homes & Guardians” therapy.

“Mother, what does normal mean?”

“It’s just a setting on the dryer, dear.”

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: 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: 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