ALZHEIMER'S--THE ART OF LOSING

Joe and Al at the gym June 2015

My Inner Self:  What are you afraid of?

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

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

Me:  I’m not afraid of anything.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ALZHEIMER'S: TRAVELING WITH THE GIRL SCOUT

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

Grandpa Joe and Hannah in 2000

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

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

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

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

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

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

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

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

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

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

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

I think Hannah would agree that Al truly complicates travel.  Getting from place to place and things like ordering food just take longer.  I’d look at her and we’d smile as Grandpa Joe grappled with choices.  She seemed okay with our slower pace, showing little reaction other than an occasional look of dismay when she realized she’d gotten half a block ahead of us. 

 

We stopped one night in Las Vegas.  I knew there wouldn’t be much there for someone Hannah’s age but I wanted her to see all the glitz.    We unfortunately became part of the summer crush, the whole town packed in like sardines.  Maybe it’s the ten years of Girl Scouts training she’s had but she was a trooper guiding Grandpa Joe through it.  Even without Al tagging along it would have been overwhelming for anyone with a handicap. 

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

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

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

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

ALZHEIMER'S--ROCK 'N' ROUND THE CLOCK

Joe and I heading to a 50's Rock 'n' Roll dance in 1988

Caregiving isn’t just an act, it’s an art. If you’re a caregiver to a spouse living with dementia/Alzheimer’s you probably already know this.  You’ve figured out how complex it can be. You’ve likely read everything you can to prepare yourself for this life-changing performance. Through trial and error you’ve learned what works and what doesn’t, and you know that each new chapter or stage of the disease will require another layer of skill. 

As a caregiver you’re likely on duty, or at least on call, 24/7.  You’re rock’n’round the clock.

In our home, it starts anywhere from 3:00 to 7:30 AM, all depending on nothing in particular. I try to keep a routine: breakfast by 7:30, lunch at noon, and dinner by 6:00. Everything planned, no surprises.  But there are days when it takes a bit of luck for that to actually happen.

For most of us, having a routine and prioritizing are accomplished at a somewhat subconscious level; you have things to get done, you intuitively know what’s important, and you create a mental list, pretty simple. 

Now assume that some things in your mind are operating without your full awareness or control, that you’re imperfectly conscious.  Your ability to manage impulses is altered.  Planning and setting priorities become almost impossible.  Things can seem urgent, triggering anxiety with no apparent logic.  That’s what it’s like when Al helps Joe out.

The other morning, urgency reared its head when Joe decided (with Al’s encouragement) that he needed batteries for his hearing aids and we should get them as soon as the hearing clinic opened its doors.  It didn’t matter that Joe hasn’t worn the hearing aids for almost a year, we had to get to the clinic, pronto!

Joe was always extremely prompt but now things seem to have time limits.  He will only wait so long for things to happen before the lid comes off, so to speak. Say we are going out for dinner, and our reservation is for 6:00 PM.  Joe and Al begin getting anxious by 5:00 and come up with reasons why we should arrive early.   I remind Joe that the restaurant is only minutes away, but that doesn’t calm the anxiety he feels over the possibility of being late. 

This next message is for the newspaper delivery guy: 

“Please, do not forget to deliver the paper.  I don’t care if you have a broken arm, have developed bubonic plague-like symptoms, or are scheduled to donate a kidney…you MUST deliver the paper.” 

I’m sure the delivery guy had a really good excuse last Tuesday.  But after watching Joe open the front door multiple times and then sit outside to wait for the paper, I called and reported the atrocity.  

No, the paper didn’t come. But the next day there were two copies on the porch.

Of course, I’m making light of things.  It’s a much better way to deal with Al than eating a quart of ice cream or box of Lady Godiva chocolates.  (Maybe that should be a published rule or something.)

Well anyway, nearly everyone I know tells me that I can’t be Joe’s caregiver 24/7, that I need to occasionally get out of the house and away from Al.  I’m so grateful for all their concern, really I am.  I totally understand their point. I know what happens to caregivers when we don’t take care of ourselves.

But at this stage in our life with Al, it’s a real dilemma.  How do you take care of yourself while also doing what is best and safest for the person for whom you provide care? It’s especially perplexing because there are still relatively normal days.  (It isn’t as though the lights have switched off, they flicker on and off.)

Most of the time Joe wouldn’t need someone.  But there are those times when he and Al need help remembering things, like turning off the water in the bathroom sink or shutting the patio door when it’s 108 degrees outside, or more importantly, what to do if Joe’s blood glucose level suddenly drops critically low.

I certainly don’t have all the answers, but I know there are resources available.  It’s about time I do some exploring and, like Lewis and Clark, discover what’s out there.

It reminds me of a country western tune (or at least my version of it).

“You gotta to know when to hold’em, know when to call for help
 Know how to plan a day
And get away
You gotta count your blessing
And the fact that he’s still able
There’ll be time enough for other stuff
When the dealin’s done.”

Last week, we finished our trip from Oregon and returned to a 116 degree day in Arizona.  I don’t have anything positive to say about that except this—thank you Willis Carrier for inventing modern air conditioning.

The Chili Cook-off in 2005

ALZHEIMER'S--THE BIG TRIP

Joe on the Deschutes River 2015

We’ve just passed the halfway mark of our trip to Bend, Oregon.  It’s been different than other trips Joe and I have made together, certainly more low-key and subdued, but well worth it; especially considering the momentous family events we’ve been able to be part of.  After all, when would you expect to witness the marriage of a grandson and the birth of a new family member all in the same trip?

I’m not saying that our other trips were perfect. I remember two years ago, we stopped for our first gas fill up and somehow managed to pull away from the gas pump with the nozzle still in the tank.  Fortunately the nozzle came out of our tank without ripping it off of the pump and setting the whole place on fire. 

Then there was the trip where Joe stepped out of a roadside convenience store and into the wrong car. Somewhere there is a guy who still tells the story about the older gentlemen who got into the passenger side of his car, looked at him and said, “Where’s Jane, and what are you doing in our car?”

Nothing like that happened this year.  Well, at least not so far.  But we were in for a few surprises once we arrived in Bend.

I’m going to give you some well researched advice.  Do not judge a vacation rental house by its pictures or the adjective-rich description you find on the web.  Pictures lie. They do not show you the true condition nor state of accommodations you may be about to experience.  Words like “authentic” may really mean “old” or “dilapidated”, while “luxurious” might mean the writer couldn’t spell “austere”.  The house we’ve rented is not a “vacationer’s dream” as it was purported, unless you’ve been doing time in a correctional institution.

But that’s not the real problem.   What’s causing us real difficulty are the steps and transitions that are everywhere, things to trip on, places to stumble over and fall.  For Joe, it’s like walking through a minefield, with something to avoid around every corner.   The lesson for me here is to ask questions—“Are there steps and how many?  Have you botched remodeling changes that make the floors uneven or safe only if you crawl across them?  Or more simply, is the house handicapped accessible?” 

Until recently, I hadn’t thought of Joe as being physically handicapped.  Oh, there are clearly limits in his ability to walk more than a short distance and maintaining his balance is harder, but handicapped?   I’ve come to understand that with Al (Mr. Trip-him-up) in the picture, there are just more physical issues to overcome.  When Joe and I walk together now I instinctively scan our environment for potential problems.  I probably say “watch your step” thirty or forty times a day (much to Joe’s chagrin).

We brought along a transport chair (a lesser version of a wheelchair) with the notion that Joe could push the chair and walk, then I could push him in the chair when he needed a rest.  I soon discovered that it’s tough for someone my size to push 185 lbs.  It’s one thing to manage it on a level shopping mall floor, a whole other thing on cobblestone paths.

As we’re heading down a walking path by the beautiful, scenic Deschutes River, I’m pushing Joe in the chair and feeling less than in control. We come to a narrow and sloped spot in the path, very close to the water’s edge.   I attempt to stop but Joe wants to go on.   I suddenly remember a scene from one of the old Marx Brothers movies, where Harpo is in a wheelchair picking up speed rolling down a hillside, heading straight for a lake with his nurse screaming and running along behind.

I casually point out to Joe that it’s about time we were heading back and somehow I manage to get us turned around.  The potential crisis is avoided and we do not become part of the evening news broadcast, but it was close.

Yesterday morning, we awoke knowing that we would be getting a phone call, either to report the birth of our new great-nephew or to tell us that he was still en route.  (His mother had gone to the hospital the night before.) Either way, we had good reason to get up and get the day started. 

Sure enough, about the time our morning coffee was brewed, the call came that the little bundle had arrived.

Joe holding the little bundle

There is something about being with the younger generations of our family that helps put all of the other Al stuff in perspective.   Yesterday was not about aging, memory loss, or any of our daily struggles.  It was about seven pounds, ten ounces of new life and the softest little toes on earth.

No matter what happens, our family will thrive and survive.  That’s just the way it is.  Sooner or later, we all take the Big Trip, no reservations required.

ALZHEIMER'S--DO YOU TAKE THIS MAN....

Joe and I  November 2014

35 years ago I answered this question:

“Do you take this man to be your lawfully wedded husband, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do you part?”

It had a poetic, almost lyrical sound to it.  Joe was 42, I was 32.  The notion that we would someday test those vows was so far into an abstract future that I doubt we truly thought beyond the present burning love that we felt for each other. (I can almost hear Johnny Cash in the background singing “Ring of Fire”.)

But how could we think that far into the future?  We still had all the present to live through. We were still making our future.

Last week we sat in the front row during the marriage ceremony of our grandson as he answered that same question, committed to the same vows, spoke the same promises to his bride.  I have to admit that while I held back tears my mind wandered to my own wedding day, and for a few seconds I took a walk down memory lane.

From the first time I met Joe I was attracted to him.  Always upbeat and happy, he moved with purpose, aware of everything around him, catching every detail.  He was a guy who got things done, two steps at a time.  When we walked together I always felt like I was trotting to match his pace, and occasionally I’d have to ask him to slow down.  (Wow, slow down?  It sounds odd to say that now.)

But it wasn’t just physically challenging to keep up with Joe. I sometimes felt like the runner-up on the “Jeopardy” show, with him just inching in for the win.  It was like matching wits with Ken Jennings. 

We’d taken care of each other.  He had my back, and I had his.  We’d been through a lot and survived, even an attempted mugging in Paris where Joe stepped in between me and a guy we both thought had a gun.  (A valiant and courageous gesture, but not the smartest thing Joe ever did.)

But on that day, at our grandson’s wedding, I held Joe’s hand with a clear understanding that I am evolving, not just his wife and partner, I am now his caregiver, it’s the agreement I made with him 35 years ago.  I had no idea that Al would show up in our lives; that he would move in and cause so much disruption. How could I? We were both young and indestructible.

Just as I see changes in Joe, I see myself changing, morphing into someone I hardly recognize.  I know I won’t ever be the same person again, but who will I become?  How will being a caregiver change me?

They say the most challenging experiences teach you the most.  I’d like to think I’ll become wiser, kinder, less fearful and more patient.  I know I’ll be more grateful for many of the things I once took for granted.  I somehow thought we would always be the same in mind if not body (certainly older, but still the same).  I underestimated the value of and became used to the good life, with both of us healthy and vibrant. 

Now we appreciate the good days (and there are gratefully some), the times when we can still have conversation and share and enjoy things together without Al getting in the way and tromping through the roses, so to speak.  I think you can’t know the value or judge the quality of life before you have the experience of living it.

Lately, I’ve been visualizing ways to foil Al’s intrusions. If only there was a way to lure him into a corral and keep him there where he can’t get to Joe.

Years ago, we lived in a beautiful place with a huge deck almost surrounded by tall pine tree.  We worked hard to make it a comfortable and attractive place to relax with family and friends.  But there were dozens of squirrels living in the trees and they decided it was their deck.  Every time we bought something nice the squirrels destroyed it.  They ate patio furniture, chewed through power lines, and even started gnawing on the deck itself.  The fuzzy little guys were driving us crazy.

When I couldn’t take it anymore, I bought a humane squirrel trap, baited it with peanut butter and started my own squirrel relocation project. I moved dozens of the little vandals deep into the woods, hoping that they wouldn’t find their way back.  A few did, but their love for peanut butter always landed them back to the woods.

Hmmm...I wonder if Al likes peanut butter.

CAPTAIN AMERICA vs. ALZHEIMER'S

Joe (Captain America) flexing with grandson Bryan 2012

Several weeks ago, Joe and I drove over to the Health Research Center in Peoria, Arizona.  We had heard through Joe’s neurologist that as many as 25 clinical studies were underway and that, at any given time, there might be ten open for enrollment.

We thought we’d just check out the possibilities of becoming involved.

We met with a very interesting researcher who provided a wealth of information and helped us better understand how research studies assist in advancing medicine and medical care.

He said they offer several different kinds of Alzheimer’s studies and trials, including those that evaluate medications that may enhance memory and delay worsening of the disease, as well as new techniques for brain-imaging and early diagnosis.

We certainly didn’t go there to find a miracle cure for Joe.  (That kind of storyline only happens in novels and B-movies.)  In my mind, our visit was directed towards the future; how could we help fight the disease (Al) that might someday show up on the door steps of our children and grandchildren?  If there was something to be found in the process that could help Joe in his own fight, it would be a bonus.

The researcher focused on one particular trial that would involve daily treatments and cognitive testing over a six week period. 

It turned out Joe scored one point too high on the memory qualification test, meaning that his memory is still too good.  Of course I had to tease him by pointing out that he had in effect “flunked” the test by scoring too high; I really am terrible.

There were a couple of eye openers for me during that visit. The first was that brain research for Alzheimer’s needs healthy subjects as well as those currently struggling with the disease.  After the researcher eliminated Joe’s involvement in that particular study, he turned to me and asked if I would consider participating. 

Wow. That possibility hadn’t crossed my mind.  I was focused on Joe. But after a quick trip to reality I decided that as Joe’s caregiver, a 20 mile roundtrip trek to a research center every day for six weeks just wasn’t practical, so I had to decline.

The second eye opener was a better understanding of how Joe now thinks in terms of the future.  Increasingly he’s focusing on the here and now; what am I doing and what happens directly after this?  Thinking too far ahead is becoming abstract, and confusing.

Joe was always civic-minded, a person who wanted to make a difference and contribute to the community.  For years he was heavily involved with national and local charitable organizations.  He was my “Captain America”.  I used to say he could squeeze blood out of a turnip when it came to fundraising; he certainly helped strengthen the Loaned Executive Program for United Way.

A year ago, it had been Joe who was eager to link up with a research group to get involved.  But on this day, he seemed a bit indifferent and apprehensive, or even somewhat fearful of what might happen to him.  I suspect that it’s just part of Al’s growing influence and the passing of more time.

We left with our names on the list and agreed that sometime in July, after our trip to Bend, we would be back at the center to talk about other opportunities.

I got to wondering why “guinea pig” had become the colloquial term for research subjects.  (I’m not implying that that term was used in any of our conversation with professionals.  It was just my own curiosity.)

It turns out Guinea pigs might not be the most common experimental subject today, but as early as the 17th century, they were.  In 1890 the cure for diphtheria was discovered largely due to the use of guinea pigs and as a result, millions of children have been saved. 

So as much as I may cringe at the idea of an animal being used in research, I proudly accept the metaphor and am willing to become a “guinea pig”.

That doesn’t mean that I would blindly become a “lab experiment” or would give researchers a “piece of my mind”, at least while I’m still using it…not that they would even want it such as it is.

It means that I now understand that advances are possible because people are participating in clinical trials and studies.  As the focus of Alzheimer’s research shifts increasingly towards prevention, I could become a partner in scientific discovery.  

Aha, sounds exciting…”partner in scientific discovery”. 

It won’t matter whether Joe is able (and I do mean able) to embrace the process or not; I will continue to pursue any possible way to stop Al, “The Uninvited Guest”.

On their way to Grandpa's spa
in 2001

I want to ensure that in the future none of our grandchildren experience cognitive impairment and wonder if they have Alzheimer’s like Grandpa did.

I have to get going this morning, Captain America and I need to get to the gym.  There are muscles to flex and calories to be burned.

ALZHEIMER'S--THE MAGIC ERASER

We are all fallible, impulsive creatures, uniquely adept at messing things up.  Yet we also hold superpowers strong enough to create what was once unthinkable, unimaginable.  We can go “where no one has gone before”. 

It’s ironic.  The human brain, through it’s billons of cells, can interpret sensations from your body, combine them with sights, sounds and smells from the outside world and arrange them all into a single incredible life; yet all told it weighs only about three pounds and has the texture of firm jelly. 

But what’s even more incredible is that something as mysterious as Alzheimer’s disease can effectively erase one’s living awareness of the world. 

The erasing sometimes takes years to detect.  But, once it starts it’s unstoppable, at least in today’s world.

I picture Joe standing at a long chalkboard writing out life’s memories as they occur, while Al is some distance behind wielding a big eraser and busily rubbing things out, a little here and a little there.  Occasionally, Al jumps ahead and erases something Joe has just written.  It goes on and on.

I suppose most spouses dealing with Alzheimer’s have that moment, the “magic eraser” moment.  It’s the day our loved one is diagnosed and we know that “Al” will be part of our lives for the rest of our time together. 

So as caregivers, what do we do?

We do what all humans are capable of doing; we show emotion, maybe cry and get mad; then we adapt and we evolve. We make mistakes and we learn.  (Then we go back to step one and repeat.)

The first thing I learned was how much I didn’t know about Alzheimer’s.  It was frustrating because Al made himself (as the uninvited guest) very much at home with us.

There really is something to the old adage, “information is power”.  The more I understand about Al, the more I feel I have some say in what he does to us; that perhaps with good information and a good plan I can maintain some amount of control.

Now “control” is a relative term. It’s defined as “the power to influence or direct a people’s behaviors or the course of events.  To exercise restraint or direction over; to hold in check; to curb.”

Okay, so maybe “control” is a little overreaching.  But the ability to have some influence is not.  The everyday decisions I make as Joe’s caregiver directly influence his physical health as well as his emotional and psychological well-being.  It’s a caregiver’s power as well as their burden.  But it certainly doesn’t mean that I can thwart the magic eraser.

Couples influence each other all the time, it’s not extraordinary. But generally if a couple makes it and stays together, it’s a two way street, the old give and take. 

With Al around, that balance is disrupted.  And that’s what creates the struggle for a spouse who is also the caregiver.  I sometimes have to remind myself that Joe isn’t the problem, Al is the problem.  It is the disease that is the disruption.

For me, battle lines are drawn.  I think I understand what Joe and I are up against.   So every day we put on our armor and ready the defense.

Right now our best defense is a healthy diet, regular exercise, proper sleep, good medical care, and the support of family and friends. 

It would be helpful to have a Jedi Lightsaber.  (I’m thinking that might just trump the magic eraser.  I believe I saw one for sale on Amazon.)

That reminds me, a few laughs are part of the defense. 

A couple of weeks ago Joe decided to grow a beard.  He has done this only one other time in his life.  So we weren’t sure what it would actually look like. 

I’m happy to report that it’s quite nice and almost entirely white.  But I’ve also noticed that it’s chameleon-like, and depending on the color of shirt he’s wearing the beard changes colors.

The other day while we were out shopping at the mall (Al isn’t wild about malls), Joe sat at the front of a store waiting for me to return.

A skylight eventually floored him with light which reflected onto his aqua colored shirt turning his beard a lovely minty green and drawing the attention of passing shoppers.  

I came out to meet him and just had to snap a picture.  I’m thinking a purple shirt will be nice for tomorrow.