ALZHEIMER'S: IT'S MY HOUSE

“Are you ready to go?” I ask Joe as I put the finishing touches on the house.  It’s another Open House day and I’ve got to make sure everything is polished, arranged and staged just right for the showings.  We’re only one week into this tedious process of making a house look like no one actually lives in it, despite the fact that when people arrive all the lights are on and soft classical music is playing through the cable Television’s surround sound.  It’s a necessary illusion in today’s real estate selling process and we must disappear so a client can fantasize, imagining it as their home.

“Yes, I’m ready,” Joe replies. “Where are we going?” 

I’ve answered the question at least four times this morning but I explain again.  “We’re just going out to lunch and then for a bit of shopping while the house is being shown.  Do you have your hat?”

“Why can’t I just stay here?” Joe asks. “It’s my house.  I can do what I want.”

“Now Joe, we’ve done this many times before when we’ve sold a home. Come on, the realtor will be here in five minutes.  What would you like for lunch? Maybe we’ll go by the DQ on the way back.”  (That usually gets Joe going.)

We’re finally in the car and it’s 110 degrees today.  I’ve got to figure out how to keep Joe and Al happy for three hours when all they really want is to be home napping in the air conditioning. 

What was I thinking?  Why did I think it would be easy?  And more importantly, how long can we keep this up?  We aren’t scheduled to leave for our daughter’s home in California for another two weeks.  By then, I’ll be completely out of anything to occupy Joe and Al and we may have to resort to a new strategy like hiding ourselves in a closet while people are viewing the house.  What a visual that creates; Joe and I in the closet, with Al standing behind us whispering in Joe’s ear that it’s “too crowded in here” and he needs to go to the bathroom.

All of this is just one giant reminder that things aren’t how they once were, before Al showed up and moved in.

I remember the exhilaration of selling a house we’d worked hard to revive from near death and turned into a showplace.  We’d been eager to show the result to anyone who happened to stumble in.  But that was then, and this is now, here in Alzheimersville.

It’s a different world here.  Things are unpredictable, and sometimes confusing.  One day Joe is with the program and seems to understand exactly what’s going on.  But the next day, he’s struggling to anchor himself against the tornado spiraling in his mind making it difficult to do something as simple as sign his name. 

Yesterday morning, as we were sitting on the patio sipping our morning coffee, Joe points to the house across the greenway and says, “Do you see that person over there in the wedding dress?”

I look in the direction he’s pointing but see no one and certainly no wedding dress.  Besides, the house he’s pointing to is owned by an 84-year-old widowed neighbor which makes it highly unlikely she would be wearing a wedding dress.

“I don’t see anything.” I say, “Where are you pointing?”

Joe seems irritated, “RIGHT OVER THERE, LOOK,” he responds.

I look again.  Still nothing.  Then I remember something I learned while watching a training video produced by Teepa Snow, a leading expert on Alzheimer’s Caregiving.  Teepa points out that arguing with someone living in Alzheimersville will almost never have a successful outcome.  That the best thing to do in a situation like this is to agree and “go along with it”.  So I tell Joe that it seemed strange that Mary (that’s our neighbor’s name) would be wearing a dress like that.  Joe agrees and the subject quickly dies.

I have to disregard my need to be logical or right because I can’t use reason with Joe.  He no longer has the constraint of being logical or pragmatic.  To my amazement he frequently talks about playing golf again.  I could come up with all kinds of logic and try to explain to him the unlikelihood of that happening.  But in Joe’s world, he wouldn’t accept anything contrary to what he believes.  He doesn’t have to.  And for that matter, I could be wrong.  Maybe in the right circumstances, with the right support, he could play golf.

Some days I completely cross the line from reality to fantasy.  Come to think of it, that’s what acting is all about, and everyone knows how I love acting; transforming myself into another person, another era, another time, another place.  Maybe that’s what this is all about, I’m rehearsing for the role of lifetime. 

There I am in fantasyland again because I know my life, Joe’s life, isn’t a rehearsal.  It’s real no matter how crazy or illogical things may seem.  

Anybody want to buy a house?

On stage in "Light Up the Sky", playing a professional
ice skater married to a Broadway producer.  Now that's fastasyland.

ALZHEIMER'S: NO MAGIC WORDS

“Hocus Pocus, Abracadabra, Presto….”

Wait, nothing happened.  Maybe I spelled something wrong.  Maybe the words are case sensitive, or hyphenated.  Maybe there should be a hash tag in front of them.  Drat.

Haven’t you ever wished there were magic words that you could say that would make everything better, get something you wanted and take away anything you didn’t want?  No?  Well, then maybe it’s just me, but I sure think it would be great if it worked that way.

Those of you who’ve been reading my posts know that I try to write solely from the point of view of a caregiver. I’m not always successful in doing that, but I try.  That’s still my intent so in this post I’m going to further delve into my very personal issues as a caregiver dealing with Al.

A couple of days ago I found myself standing in front of our bathroom mirror with the eerie sensation that I am looking at a stranger.  There is a woman there, but one I barely recognize.  No, I’m not exaggerating (well, maybe just a little).  The person I see is older, heavier and—I can’t help but think—a little shorter than me.  She isn’t smiling, and seems unhappy looking back at me.

I touched her face and felt the wrinkles on her neck and wondered how old she was.  I thought how much better she’d look if she smiled and lost a few pounds. I noticed she needed a manicure and thought a bit of conditioner might help with her frizzy hair reflecting in the light from the bathroom’s solar tube. 

I stood there and had a very private conversation with this person.  I asked her what had happened to her. 

She picked up a hair brush and began to stroke her hair and said, “Nothing actually happened to me.  It’s my husband. He’s been assaulted by a monster named Al who now lives with us.”

I said if that was the case, why did she look so wounded and despondent? 

She looked straight at me and began to explain.

“You see, for the last three years I’ve been the primary caregiver for my dear husband.  This is something that I want to do for him.  I love him. But, being a full-time caregiver can wear on you and change you in ways you don’t expect.  It can alter your spirit and create an imbalance to your universe.  I had stopped doing the things that allowed that balance, so right now what you see is what you get.”

I leaned closer to the mirror and asked, “How will you fix this?”

She replied, “Unfortunately there are no magic words or potions.  I have to do this myself.  I have to start making time for me.  It might seem egocentric given my husband’s struggles with such a man-eater as Al, but that’s really what needs to happen.  If I don’t take care of me soon I won’t be able to care for anyone. “

I told her that I understood.  She smiled, “You do realize that I’m you, right?  You have to do something.  I’m just reflecting you.”

How could she be me? I looked much younger than her, my posture better; I had style and took pride in myself.  I had a sense of humor and laughed a lot.  Wait, I said “had” didn’t I?

   

But she was right. 

Quick, I need the magic words….”Hocus Pocus, Abracadabra, Alakazam!  Shoot, it still doesn’t work.”

So, I guess I will have to do this myself.  I’m back online loading the Weight Watchers app and planning for tomorrow.  It’s still many weeks before we’re back in Oregon, so I have some time to work on myself.

_________________________________________

If this sounds all too familiar, find a support group or go online at Alzauthors.wordpress.com and read what other caregivers are saying and doing to protect themselves and maintain balance.  Because the fact is, you can’t do it alone. Managing Al takes a village, a country, a nation.

Part of my balance plan includes humor and being able to laugh at myself.…I don’t have to look far to find things to laugh about.

I haven’t developed dementia, although there are times when I wonder.  Like the other day as I tried to change a password for one of my web applications.  The little sign-in box on the screen refused to accept a password I had used for months and suggested I enter my email address, go to that address and receive a temporary password.  I did and read the first line in the instructions which said, “Your password is CASE SENSITIVE”.  So I went back to the application and typed in “CASE SENSITIVE”.  Only after several failed attempts did I go back to the email and read the full instructions, and in my private embarrassment realize my stupidity.  I’d like to say it was a unique occurrence, but I would be lying. Where’s a magic word when you need it?

Joe and Al on Father's Day 2016

ALZHEIMER'S: LIFE AT THE SPEED OF THOUGHT

Joe with his two daughters, Juli and Jodi in 1968

My mind races.  It’s been an issue for me since I can remember.  I’ve always been what I call, “bi-focused”.  When I was in grade school, I recall my mother sitting down with my third grade teacher as she explained to mother that I had too much energy, couldn’t stick to one task at a time, and generally had the attention span of a fruit fly.  (Well, maybe that isn’t exactly what she said but that was the gist of it).  I couldn’t understand why they thought I had a problem.  Didn’t having all that energy make it easier for me to get a lot of things done?  Wasn’t that a good thing?  (I’m sure any therapist reading this post will disagree.)

When I was older, I got paid to multi-task, react quickly and think fast.  Those were desired abilities.  Of course, there were side effects like not sleeping and having to do yoga exercises at night or take drugs to get my mind to shut off, but that was just part of being hyper-productive, right?

Fast forward to today, here in Alzheimersville where speed only exacerbates our issues.

  

As the speed at which Joe processes information slows down, his world is slowing down (a consequence of having to drag Al around with him).   There are occasions when, by the time Joe reacts to something I’ve said, I’m miles of thought in another direction and have to put on the brakes and backtrack in order to converse with him.  The astronaut Gene Cernan, the last man on the moon, said it well describing how quickly thought could take him back to the surface of the moon.  He called it, “traveling at the speed of thought”.  That’s all it took for him to again be 238,900 miles from earth hopping in the lesser gravity (5/6 less than earth to be exact).

But your thoughts can only travel at the speed your brain is functioning.  If you’ve ever tried to work with an older outdated computer, you get the concept.  And as Al continues to downshift Joe’s brain functions, everything slows down, even the pace at which Joe eats.  Nowadays, I’ve finished my plate, cleaned up the kitchen and am ready to start the dishwasher by the time Joe’s barely started.  The other day it occurred to me that I was rushing him (about many things) and needed to sit down, relax and just wait.

When I stop and really consider our lives today, I can see that everything has slowed down.  Joe just needs more time; more time to shower and get dressed in the morning, more time to get from point “A” to point “B”, more time to think.  He’s now very deliberate in what he does.  There really isn’t another choice. 

None of that should surprise me.  In fact, it would be irrational for me to expect otherwise.  But, sometimes it seems that life is moving in slow motion; that we’re watching ourselves in a video and someone has tampered with the playback option.

I don’t mean to seem insensitive.  I’m just continually struck by how many parts of our life are impacted by Al.  In fact, I’d be stumped if you asked me to name something about our daily routine that has remained as it was prior to Al’s arrival.

Last week we got the results from the grueling half day of testing Joe went through several weeks ago.  I wasn’t surprised to hear that he most likely has an atypical form of Alzheimer’s, one that initially affects language but in most cases impairs memory and executive function as well.  He’s scheduled for a MRI later this week and I’m hopeful we’ll know even more.  Joe still hasn’t put the possibly of Vascular Dementia to bed, but I have. 

We’re heading to California for a visit with one of Joe’s daughters and her family.  I’m a little nervous about it, unsure how Joe and Al will manage the travel and being outside of their normal environment.  It seems so strange even to think about it.  After all, we’ll be with family.  What could happen?
   

Well, if you haven’t lived with Al before, you might have trouble grasping the scope of adjustments that are necessary.  Just going to a restaurant means planning ahead, avoiding any place that doesn’t take a reservation or has a complicated menu or spicy food.  Then there’s the need to avoid crowded or noisy spaces, or any place that’s too warm or too cold or has stairs.  That eliminates two thirds of all the places in the State of California.

 The pace of life at our daughter’s young family home will seem like “warp speed” to Joe, and for that manner, even me.  But with all that said, we can’t wait to get there.

When we return I’ll be starting in earnest packing for our move to Oregon.  I’m not concerned about getting ready.  After all, I’ve had a lot of practice. 

Maybe we could strap Al to the luggage rack on the top of the car like they did with “Granny” in the television show, The Beverly Hillbillies.

Yes, I know--it's a bad idea.

ALZHEIMER'S--WE'RE MOVING

Joe during our early days in Bend, Oregon

We’re buying a home and moving, again.  It’s a process not new to us.  In fact, over the years we’ve become quite good at uprooting and replanting.  I get a kick out of watching home improvement shows where they make it look so easy; ten minutes of negotiation, slap a SOLD sign on the house, and it’s yours. 

The truth is you have to go through a lot of pain and worry before the ink will dry on a contract and someone gives you keys.  Only then does the real stress of moving begin.  That’s just the way it works. 

So why would I decide to go through all of that again, knowing that it will be even more stressful with Al (the squatter) in the family?

As a caregiver, I’ve learned a lot over the past two and a half years.  Most significantly I’ve learned that it takes a village to manage Joe and Al.  You can’t live in Alzheimersville alone. I’ve tried.  So unless I’m willing to throw in the towel—I am not—we need to make some changes.  (That sound I’m hearing in the distance is a chorus of friends and family singing, “We Told You So.”)

We could stay put, hire people to fill in the gaps and off-load some of the work involved, but we would still lack the very necessary emotional support that goes along with managing this disease.  (You noticed I said “we” because loneliness affects Joe as well.)  That isn’t to say that we have no one here, we do.  We’ve enjoyed being closer to Joe’s sister, but she herself is a senior citizen and shouldn’t be taking on responsibility for our needs.

I’ve made many mistakes.  Just after Joe’s doctor give us a likely diagnosis of Alzheimer’s, I panicked.  I decided what we needed was a warmer climate (away from snow and ice) in a very low maintenance and lower cost environment.  So we moved to Arizona.  I was healthy and completely capable of managing everything. Or so I thought.  

Boy, have I learned.

If this blog does nothing else, I hope it expresses how important it is to surround yourself with emotional support at the same time you’re insuring all the physical things are in place to face this monster.  It doesn’t matter how capable or invincible you think you are, you will need emotional support at an ever increasing level.

In the support group meetings I’ve been attending, one of the things that caregivers cite as most challenging is loneliness and feelings of isolation.  That it isn’t something that can be solved by simply having someone in who changes the bed, or does the laundry and sweeps the floors.  You’ll need time away from caregiving; time to refresh and have conversations about things other than doctor’s appointments, hygiene, or the countless other caregiver tasks.

Al doesn’t take a break. He is always there, chipping away and removing Joe’s capabilities and testing mine.  The time is coming when I won’t be able to leave Joe and Al alone even for a short time.  When that happens there will be a whole new set of issues to face and greater isolation.

So, we are moving back to Bend, Oregon into a multi-generational home, a house we’ll share with one of our daughters and her family.  We won’t be doing the “Waltons” thing (we will have separate living spaces, including separate kitchens).  Both families will hopefully still have whatever privacy is needed, but we’ll have the comfort of knowing help is just a few steps away if we need to hog-tie Al and lock him in the garage next to the kayaks and snow shoes.  Joe will have people to talk to and more things to do, while I’ll be able to sneak away now and then.  I feel completely lucky and appreciative to have such an option.  (If only we could leave Al here in Arizona.)

The other night, I lay in bed listening to Joe snore while I thumbed through the television channels unable to find anything that interested me.  I finally settled for a program titled, “Little People, Big World”.  It’s a show about a family living on a farm in Oregon.  In this episode, one of the sons had married and, with his new wife, had moved to live in Bend, Oregon. 

As I watched scenes filmed in Bend, I began to cry.  I was remembering my first time traveling to Bend as a child with my parents and all those working years later that Joe and I had planned our retirement there.   I thought back to the great years we’d spent living in Bend, in spite of the cold winters.  I could almost smell the juniper infused air and taste the clear mountain water.  I felt warm and strong thinking of being back with people we love and I realized then just how much I’ve been missing Bend.

So, like the sirens calling the captain to the sea, Bend is calling us home, back to where we both should be.

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.