ALZHEIMER'S: LOOKING FOR THE EXIT RAMP

Several years ago Joe and I were traveling from Oregon to California on a route that skirted around one side of Los Angeles and on toward the Coachella Valley.  This was by far my preferred route, avoiding as much LA traffic as possible and thereby saving my sanity.  We were making good time when our navigation system notified us it was time to make a right turn at the next exit.  Having just driven nearly 900 miles without missing a beat following its directions, I did as directed and exited right, even though my instinct told me the system was wrong.

We hadn’t driven but a few blocks when I realized my mistake.  The system had dumped us in the middle of L.A.’s China Town.  Thinking there must be a freeway entrance nearby we continued to drive while we waited for the navigation system to catch up, recalculate our route, and get us back on the freeway.  It didn’t.  Nearly an hour later (and after several loud exchanges between me, the driver, and Joe, the navigator) we finally stumbled upon a freeway entrance and were on our way once again, nerves somewhat shattered.

It’s so easy to rely on the experts and trust their direction above your own instincts.  I couldn’t count the times I’ve said to myself, “Why didn’t I just do what my instincts were telling me?”

Technically we need both instinct and reason to make the best possible decisions, but I’m often uncomfortable with the idea of using instinct as a guidance tool.  Maybe it’s cultural but when I follow a “hunch”, which I often do, I’m reluctant to admit it.

Just after Joe’s first appointment with a neurologist after his MRI showed very early signs of brain shrinkage, the doctor concluded Joe’s cognitive issues were likely early stage Alzheimer’s disease.  Of course we were both in shock, unable to listen too much beyond the word “Alzheimer’s”.

I recall the Neurologist saying something about other tests that could be done, a PET scan or something, but that there was no single test that could conclusively show a person had Alzheimer’s (other than an autopsy, which Joe and I both thought was a bad idea).   The scan might cost four or five thousand dollars and would not be covered by insurance so, we took the doctor’s recommendation and didn’t do the test.  End of story.

 Well, not quite.

Over the last two and a half years, I’ve read just about everything I can regarding Alzheimer’s and its diagnosis.  I’ve discovered that once a doctor charts a likely diagnosis of Alzheimer’s and the drugs are prescribed, the testing basically stops.  At that point you can call it Alzheimer’s or you can just stick with dementia, your choice.  Most would say it really doesn’t matter because the prognosis is basically the same. 

Early on, Joe had a feeling (an instinctive feeling) that what he had was Vascular Dementia (not Alzheimer’s) which is basically damage to the brain’s blood vessels that reduces their ability to supply the nutrition and oxygen required to perform thought processes.  He’s said this to me many times.  And, based on the fact that he’s a diabetic with a history of high blood pressure and heart disease, he could be right.  His instincts could be just as valid as what little factual information we have.

It might sound like “six of one or half a dozen of the other”.  But if it were Vascular Dementia, there might be a more appropriate treatment than what Joe is currently prescribed.  

Later this month we’re seeing a new doctor at an Imaging and Neurosciences Center near us.  I’m hoping he will again address the diagnosis. 

It wouldn’t break my heart if we had to say good bye to Al.  But the fact is, we’d only be saying hello to another villain.  I’d have to come up with another name, maybe “Vassy” because I couldn’t just use the initials for Vascular Dementia, or “VD”.

I’d much rather be looking for the exit ramp that could get us off the dementia freeway altogether. 

  

Don’t it always seem to go
That you don’t know what you’ve got
‘Til it’s gone
They paved paradise
And put up a parking lot.

“Big Yellow Taxi”, Joni Mitchell, 1970

This month Joe’s daughter Juli came for a visit.  What a shot in the arm.  Being with her and hearing about all the grandkids and their busy lives serves to remind us that we’re part of something larger than our selves.  We’re a multi-generational tribe, and there is indigenous strength to be drawn from each other.

Daughter Juli, Joe and Grandson Joey 2014

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: The Slow Tsunami

Joe chillin in the breeze February 2015

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

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

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

  

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

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

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

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

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

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

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

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

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

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

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

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