ALZHEIMER'S: WHAT YOU ARE IS

There are days… days when I don’t know what to do… times when I’m discouraged and can’t grip hard enough to stay positive.  Should I just let go and let whatever happens happen?  Does what I do even matter?

These are the questions that run through my overcrowded caregiver head.  Yes, I know being negative won’t solve our problem with Al. It might even empower the son-of-a-b@$%!.  No one said this would be easy; in fact, they all keep telling me it’s going to get harder. 

But there’s a phase that keeps coming up, bubbling to the surface of my boiling pot:

“What you are is what you think you are.”

Over the years I had heard that phrase many times, but somehow it hadn’t sparked much thought.  That probably had something to do with my frame of mind at the time.  I never had to worry much about being positive.  That’s just the way I was, happy and cheerful, thinking I could do anything.  I laughed a lot, too much, sometimes when I shouldn’t have, like during the last week of my mother’s life.

As my dear mother lay struggling to breathe and clear her throat, I’d coach her to cough and spit into a cloth I held at her face.  I’d say, “Mom, just spit, please, please.  It’s okay just spit.” She’d look at me in confusion and stick out her tongue and I’d say again, “No Mom, just spit,” and I’d fake a spit to show her.  This went on several times until finally, looking very serious, she lifted her head, puckered her lips, drew back and spit… right into my face.

I gasped, completely shocked, and looked at her with my mouth wide open.  She also looked shocked as I began to laugh.  Then she began to laugh.  We laughed hard. That was the last time she ever laughed.

So here I am today, having to think about being positive, needing to be positive and cheerful.  It’s just part of my new reality.  Like what happened this week at Joe’s appointment with the new doctor, a geriatric psychiatrist at the research center.  I ached for Joe as he struggled through the tests, knowing that he had declined; that his cognitive abilities had changed, slipped a little farther, and I knew Joe was painfully aware of it. 

As we left the office, he said, “I didn’t do very good, did I?” 

The last thing he needed was for me to be dejected or despondent.  So I wasn’t.  I put on a smiling face and reminded him I loved him and said it was okay, that he really hadn’t done that badly and that others probably couldn’t tell a hippopotamus from a rhinoceros either.  And we laughed.

All the while I’m thinking I’ve been expecting too much of Joe, that I’ve been impatient and annoyed when I shouldn’t have been.  I still have an image of him in my mind as the thinker, the strong capable guy; I don’t like being slapped back into reality and having to face the truth.  The doctor called it “moderate stage” this visit, not “mild cognitive impairment” like we’d started with.  I can no longer refer to Joe’s struggle as early stage anything.  I’m feeling inept as a caregiver wondering if there was something I could have done to slow the decline.  I disappoint myself over and over.

Wait, there’s that phrase again,

“What you are is what you think you are.”

Some forty years ago, Dr. Maxwell Maltz wrote a book called Psycho-Cybernetics. It explained how self-image is such a large part of how we view our limits and capabilities, and that we have the power to change our thoughts and therefore change our lives.  It isn’t just being positive and having a strong self-image that makes the difference, it necessitates actions that support those positive feelings.

I’m going to give it a try.  I’m going to start telling myself that I’m a gifted caregiver and that what I do enriches and improves Joe’s quality of life.  I will remove barriers that keep me from being my best.  I will correct my internal voice when it exaggerates the negative or throws insults at me.  I understand that perfection is a high goal to aim for. I don’t need to start there, or even end there. I know that everything is not my fault or my responsibility.  I will accept help from those who love us.

What I Am Is Not What I Have To Be

I’ll start with small steps.  For years I’ve said to myself that I’m not a morning person.  It’s well after 8 o’clock by the time I stumble out of bed and shuffle into the kitchen for that first cup of coffee.  (Joe typically wakes long before me.  That’s partly because he wakes me during the night, and I don’t easily go back to sleep.) 

Now, if you’re not a morning person in Arizona in the summer time, you will completely miss any chance of going outside without melting in what feels like the surface of the sun.  So, right about now, I must become a morning person. 

Tomorrow morning, I will get up no later than 6 am and have coffee on the patio, just Joe, Al and me and the birds singing in the trees (and the guys that pick up the trash on Mondays).  It will take a while before I will easily roll out of bed and truly become a “MORNING PERSON”, but I will act like one....YAWN

ALZHEIMER'S: AL THE IDENTITY THIEF

I’m hiring a housekeeper, something I said I would never do again.  It’s unlikely there’s anyone out there that could live up to my standards.  I’m the only one that will get every crumb from under the kitchen table, every smudge from the refrigerator door, and every single germ off the bathroom floor.  I was tutored by the best—my mother, the Cleaning General.  She taught me to respect “clean”, to get under the bed to search for dust bunnies and to rub out any sign of filth even if it was on the pipes in the basement.

Mother said someday those tasks would be an important part of my role as a wife and mother, that I would be judged by the polish on the credenza and smoothly combed hair of my children.  These were rules in familial relationships in the 50’s and I followed the teaching religiously for the first seven years of my married life.

Then I went to work outside the home.  I still tried to be all things for all people, but over time I began to shrink under the weight of the added tasks. Reality took over.  One husband and a sink full of dishes later and I was in a new reality, an independent woman with two kids and a career.

Then Joe come along and we married and successfully negotiated a new set of marital roles.  After I retired, I began to revert back to my gut level values as the one responsible for the home.  Oh, I carried on with creative outlets in art and theatre but my chief focus was Joe and my role as a wife and now grandmother.

Then one day Al showed up.   I watched as this cunning adversary began to systematically rob Joe of his independence and slowly disable him physically and mentally while at the same time stealing my identity. 

I’m not talking about what’s in my wallet.  I’m talking about something far more important, my well established familial role as Joe’s wife and partner.

How could Al do that?

I think of myself as having both a wife and a caregiver identity. If I’d drawn a pie chart before Joe’s disease was identified, all of the pie (the whole pie) would be wife identity, encompassing our version of a typical domestic marital relationship.  (This is a slippery slope because today there are new typical married relationships, very different from those 20 or 30 years ago.  Today couples develop a rhythm to their married lives that works for them; he does this, and she does that.  If I’m an accountant, I might manage the family money, or if Joe is a chef, he might manage the kitchen.  For us as a couple, that would be our typical martial relationship.)

Now because Al (the cat burglar) is insidiously slow, changes in role identity/responsibilities happen gradually.  For me, caregiving began as I took on tasks that were not part of my typical division of marital labor; in our case it was financial planning, paying bills, house and car repairs, tax preparation, administering medications, and so on.  So a slice of my pie gradually became caregiver identity. 

Time passed and the weight of these tasks has grown heavier as my wife identity has shrunk.  It (wife identity) now represents only about a half of the pie chart; as Joe’s needs for care advance, and without a way to off-load some of my growing responsibility, eventually the wife identity portion of that pie would all but disappear.  At that point Al, the master thief, would have successfully stolen my wife identity.

And by the way, just as I’m moving more and more into the caregiver identity, Joe is steadily moving out of his typical role in the family relationship, and has many of the same struggles with loss of identity that I have.  (I’ve written a blog about the battle of the steering wheel.)  But things as small as not being the one to pay the check in a restaurant or pumping your gas resonate as losses for Joe.

So maybe having a housekeeper won’t be so bad.  Maybe it will allow me to focus more on just being Joe’s wife and chief supporter, without some of my ridiculously dated identity clichés that have become burdens.  I know that other transitions in our relationship are inevitable, but I’m okay just moving one foot in front of the other, staying ahead of Al, the Identity Thief, as long as I can.

This week we returned to the surgeon for another bout with skin cancer.  This time it was on Joe’s ear.  We thought the procedure might require a bit of plastic surgery, so I asked Joe if he would agree to a skin graft or just go with a tortured genius look of Vincent Van Gogh.  Somehow Joe didn’t think that was funny. 

It turns out, historians argue that Vincent may have made up the whole story about cutting off his ear, that it was actually ripped off in a fight with a friend.  Who can you trust?

Forget the Pie Chart...I ate it.

ALZHEIMER'S: IT'S JUST WORDS

A trip to Hawaii 2004 without Al

Getting Joe’s attention...

“Donna sent a message about the program last night on Nova.  She said it was quite informative and at times so moving it was difficult to watch but she’s glad she did.”

 Joe responds, “What? What did I do?”

“No, it’s a message from Donna,” I reply. “Here on my phone, see?”

Joe picks up my phone and looks at the screen, then in anger says, “I don’t understand this, IT’S JUST WORDS”.

 

I read the message again, only this time I’m almost shouting.

Joe’s right, they are just words to him and Al, written in some illogically random order with no decipherable connection.  But to me, what I read was a clear and succinct statement.  I tried three times to help him understand before I finally shouted at him in annoyance and gave up.

It’s a familiar scene in our new reality but not the way we communicated for the first 33 years of our relationship.  Back then there were long savored conversations about kids, careers and work, and even politics.  We rarely struggled to communication ideas and feelings.

Joe had depth of thought and seemed to know a lot about everything, especially sports.  If you wanted to really delve into a topic, Joe was the guy to talk to.  But now, here in Alzheimersville and just after this unsuccessful encounter, I’m left feeling sorry and frustrated.  Sorry that I shouted at Joe when I know he isn’t doing this intentionally, and frustrated that the only thing I can do to make it better is to change myself.

Every caregiver knows this, knows that managing your way through a day with someone with dementia means you frequently change and adapt, reshaping your approach to match whatever Al is doing to your loved one at that moment. For me, it’s a root cause for much of my caregiver stress.

I never know which Joe I’ll see today or even over the next few hours. Will he be able to communicate, or will Al be dominating, causing me to dig down to a whole new level.   And of course, there’s always the question of how much Joe actually remembers of what we talk about.

Looking back ten years or so, I remember Joe had started getting quieter at dinner parties, not his usual conversational self.  I brushed it off, attributing it to hearing loss and the fact that we were often with people who talked a lot, including me.  Now I believe it may have been an early symptom, evidence of a problem that I missed.  Hindsight is wonderful.

Last week Joe and I attended our first Early to Mid-Stage Alzheimer’s Support Group, a meeting designed for the person struggling with dementia and for their caregiver.  Although Joe had agreed to go, I wasn’t sure how he and Al would react.

I managed to get lost on the way to the meeting which put us in a rush to get parked and into the facility (not the way to start your first session).  I signed us in, got Joe seated and told him I would be in the next room with all of the other caregivers.  He seemed surprised and looked at me intensely.

“Where are you going to be?” he said.

“Just in the next room,” I repeated.  “This will be okay, I’ll just be over there,” pointing toward the door, “with all the caregivers.”  I knew I’d told Joe we wouldn’t be meeting together, but he clearly didn’t remember.  I headed out the door feeling a bit like I’d just left a child on the first day of school. 

 It turns out, Joe actually enjoyed the group session and agreed to go again.  We finished our outing with lunch at the Cheesecake Factory where several times I probed trying to find out what he thought about the whole thing.  He didn’t seem eager to talk about it.  All he would say was that he was not alone in his feelings.

It might not seem like a big deal that Joe and I went to an Alzheimer’s support group meeting, but it was a milestone for Joe.   It was the first time he had spent time with others who are struggling with their own Als.

It’s late evening and I’m sitting at the computer finishing this post.  Joe’s gone to bed so the house is quiet.  All I hear is the iconic howl of a coyote in the distance.  The coyote appears as a mythological figure in many Native American tales, often as a shrewd and clever beast.  But in some tribes he is the scoundrel, reckless and destructive; still in others he is a comic trickster who moves in and out of trouble. 

Maybe it isn’t a coyote that I hear.  Maybe it’s Al howling at the moon, looking for another mind to destroy.

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: GROUND CONTROL TO JOE

Ground Control to Joe, you are not alone.

I’ve never piloted an airplane.  I know many people who have and I admire their ability to do so but I’m okay with having someone else in the cockpit.  In fact, I’d really rather not fly at all, and if possible, I don’t.  To me being on a commercial airplane is a bit like sitting on a lawn chair in a drain pipe with 200 slightly uncomfortable people whom you’ve never met.

When I was still working I flew often, I had to.  Driving to London or Tokyo from Oregon would have required some high speed amphibious vehicle not yet invented.  My dislike for flying had nothing to do with the 9/11 tragedy but several years after that event on a return flight from the Caribbean, I lost it. I had a good old fashioned breathe-into-a-paper-bag panic attack and wound up in a Dallas hospital.  It only happened that one time, but I can tell you since then I only fly medicated.

I’ve heard Air Traffic Control described as the brain center of the airways, providing pilots critical information required to navigate air space, prevent collisions, organize and expedite landings and takeoffs, and manage a host of other things related to keeping things moving and on time.  That sounds a lot like the brain’s function in the human body. 

Now let’s say Al goes to work as a controller for Joe’s brain. 

During his first few years on the job things go pretty well and he manages to keep things on track just as he was trained to do.  Oh, he pushes the wrong buttons from time to time but only little things are affected in Joe’s brain, not much to worry about.

Over the next year or two Al occasionally dozes off on the job and Joe starts forgetting words and misplacing things.  Al spills something on a control panel and Joe begins making errors in judgment.  Then one day, Al steps on a power cord and the part of Joe’s brain that controls emotions goes haywire. Joe starts getting angry and saying things no one else understands.

About this phase on the job, Al gets bored and starts flipping switches just to see how Joe reacts.  Joe starts sleeping in the middle of the day but can’t sleep at night.  He can’t remember where we parked the car or find his way to places he’s been many times.  There are days he’s just stuck in a dense fog, unable to tell the time of day.

It’s become clear that Al needs to be fired.  He’s creating major problems in Joe’s everyday life and there is no question who’s to blame.  But by now Al has tenure; he’s a union guy, which gives him the right to keep the job for as long as he wants.  There isn’t anything we can do.  We can’t even negotiate.

Al has put Joe on an unnavigable course without hope of a correction.   There are no tools to fix what Al has sabotaged and he’s emboldened by our inability stop him. He’s triggering the hatch door and readying to send Joe on a journey with no return.

“This is Major Tom to Ground Control
I’m stepping through the door
And I’m floating in a most peculiar way
And the stars look very different today
For here am I sitting in a tin can
Far above the world
Planet earth is blue
And there’s nothing I can do
Though I’m past one hundred thousand miles
I’m feeling very still
And I think my spaceship knows which way to go
Tell my wife I love her very much she knows”

Lyrics from Space Oddity, song by Dave Bowie in 1969. 

It might be too late to stop Al this time, but we’ve got to take him out before he destroys others.

Please join me in the fight to stop Al.  Take the Purple Pledge at: www.alz.org/abam

Each time you talk about Alzheimer’s disease, you raise awareness and inspire action.

Ground control to Joe, you are not alone.

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