ALZHEIMER'S--A GREAT MAN

Joe Gayer
July 28, 1938--November 19, 2016

ALZHEIMER'S--LIMBO DANCING WITH AL

Lounging at the pool in La Quinta, California 2012

I’m old enough to remember Chubby Checkers’ recording of “Limbo Rock” which peaked at number two on the Billboard Hot 100 list.  I was fourteen at the time and spent hours with my cousin bending my spine in half (which only a kid should do) trying to slide under the limbo bar just inches off the ground.

The dance originated as an event performed at wakes in Trinidad and Tobago but as we Americans tend to do, we made it our own and it became a true party game. 

Today, when I think of the word “Limbo” it has a different meaning for me and it’s certainly not a party game.  Well, I guess I could call it a game in the same sense “Russian Roulette” might be referred to as a game.  Looking at it that way, we’ve been playing the “Limbo Game” with Al the Mind Monster for over four years.

We started the game when Al first joined our family.  Back then, it was easy to get under the bar; in fact, as Joe’s caregiver I could almost clear it without bending my knees; I stayed balanced and slid right under. 

Several months or even a year passed before Al lowered the bar again.  Still, I made it under with little effort and the game went on.

Then in 2013, Al decided to change it up a bit and moved the bar significantly lower.  I had to think about how I would get down under it.  I strained but maintained focus, staying level, and just made it.  I’d hit a new low, or so I thought.

But Al wasn’t nearly done with us. He kept lowering the bar.  I’d think, “this is it, we couldn’t bend another inch, we’ve had enough.”  But, something inside me would push me lower and lower, my nose just clearing the bar.

Then Al really mixed things up and sent Joe to the hospital.  The game took on a whole new dimension, one that I hadn’t expected.  I watched Joe’s health decline with every day that passed and felt helpless to make him better.

Yesterday, we stopped the game.  I’ve gone as low as I can go and so has Joe.  Now we’re in a new game.  Oh, it’s still called “Limbo” but today that’s just another word for Hospice and our family worries and watches as Al makes a final pull to take Joe from us.  And this time, we are truly in limbo.

ALZHEIMER'S--IS ANYBODY OUT THERE

Heading Home from the Hospital

What was that sound?  “Is anybody out there?”  I squint, scanning the darkness, but see no one.  

I hear it again, a low throaty sound.  “I’m serious, who’s there?”  Still no answer.   I’m now shouting. “Okay, this isn’t funny!” 

I’m alone in a dark and unfamiliar place and can’t find my way out.  I think to myself, “Maybe across the room there’s a way” so I walk toward the only light I see, just a flicker.  I feel along the wall and finally reach the frame of a door.  I run my hands up and down the wall but feel nothing.

I sense a cold dampness and a chill goes down my spine.  My breathing changes.  Now I’m really frightened.   My mind races. “Who knows where I am?  I must have told someone where I was going.”  Then I remember, "Joe, Joe knows.  He’ll find me.  He’ll come looking for me, I can count on Joe.” I flash back to the time we vacationed in Paris and the guy with a gun (at least I thought it was a gun) came after me and Joe stepped right in between us, ready to take a bullet for me.  “Yes, Joe will come for me.”  I crouch down, trying to avoid detection until Joe comes. 

But Joe doesn’t come.  I wait and wait but he doesn’t come.  I realize I’m completely and utterly alone.  I feel sick with the dread of the emptiness that will surely engulf me.

______________________________________________

So now you know why I should never try to write horror stories.   This is of course an allegory to say I’m losing Joe; not today or tomorrow, but at some point--Joe will not be coming.  For the last fourteen days (his hospital stay) I’ve watched him become a little less of himself, filled with drug after drug, all with good intentions and meant to help but just too many.  I've known all along that Joe would be leaving me, his family and his friends, that Al the mind monster would slowly pull him from us, but somehow this morning I’m sensing just how deep my loneliness will go. 

I’ve been desperately trying to hold on to Joe, to pull him back from Al, to make space between us and the edge of the precipice, but I’m losing ground an inch at a time.  I guess that’s why they call it “the disease of a thousand little losses”.  (Okay, so I’m not sure anybody but me actually calls it that.)

This latest saga began about two weeks ago.  Joe woke around midnight trying to get dressed to go to “the game”.  I’m not sure what game he thought he might be missing but to calm him down I told him the game didn't start until morning, that we would go to the game then (little white lies…maybe a future blog title).  He seemed relieved and drifted back to sleep. So did I.

When morning come, I felt Joe's side of the bed and realized he wasn't there.  I scrambled up and into the living room where Joe stood looking cold and confused.  A pile of peeled bananas was on the counter and everywhere I looked there was disarray. 

Being the caregiving shrew that I am I began to skriek at him.  (I know...but I just blew a gasket.)  It was as if a vandal had been in the house.  I kept saying, "What have you and Al done?" and Joe kept repeating, "I don't know what happened."

I finally gathered my composure and realized Joe was in real stress, different than other times.  A foot that had been sore and a little red the day before was now swollen and causing him real pain.  I sat him down with an ice pack while I continued the cleanup.  Dr. Jane assumed it was a gout flare up, which in the past could quickly be resolved with medication we kept on hand.  By mid-afternoon Joe began to feel ill. Again, Dr. Jane thought it must be him catching the cold I was still sniffling with.  But when Joe couldn’t eat his lunch, couldn’t stand up and began to shiver and shake, I called for help. 

You’re probably wondering why it took me so long to realize it was something serious.  In hindsight, I should have reacted more quickly.  But this all happened within a few hours.  

Nothing has prepared me to face the things Al is doing to my loved one or what I’d have to do to for my loved one.  I’ve read a lot about this disease and followed other caregivers’ journeys with the same issues.  But nothing, nothing brings it home like your own reality.

Joe is home now, in a rented hospital bed in our living room.  The infection that body slammed him is slowly subsiding.  He should be in a rehabilitation center but because of his dementia no facility would take him.  They said he was a “fall risk”, a “liability”, a “high acuity” patient, which are just other ways to say, “we don’t want him”.  These are facilities that are covered by Medicare, but because they are private companies, they can pick and choose who gets care and who doesn’t.  So, we’ve hired our own private care which will be entirely on us.  Something is wrong with a system that has failed completely to address Alzheimer’s or other dementia patients’ post-surgery needs.

That’s enough already.  Being down in the dumps doesn’t solve anything.  It’s not the way I roll.  I turn crappy into happy, bad into glad, pain into sane, (help me here, I am running out of rhyming phrases).

And when I ask, “Is anybody out there?” I know you’re all out there, wishing the best for us and ready with a kind word when we need one.  

ALZHEIMER'S--A DAY IN THE LIFE

Joe in his new recliner having just learned he's going to be a Great Grandfather

The phone is ringing….

I really have to start putting my cell phone in the bedroom at night.  By the time I get out of bed and stumble around looking for the phone it’s too late.

 

I look at the clock.  It’s not quite eight.  I wonder aloud, “Who would be calling me this early?”   Yes, I know it’s not really early but if I’m going to get at least six hours of sleep I need to sleep in a little later.

Joe’s been up for who knows how long.  I’ve stopped trying to wrangle him back into bed unless it’s before one o’clock in the morning.  All it does is make me crazy and agitate him.  Of course, there are times when I wish I had forced him back to bed, like the morning he completely undressed and sat on the sofa in a very chilly living room.  There’s always guilt when I realize he’s done something I could have helped with.  Last week I found his pajama bottoms in the trash. 

Joe’s happy to see me up.  (I’m not sure if he even heard the phone ringing.)  He’s attempted to dress himself and I can’t help but snicker noticing he’s got two shirts on over his sweatshirt, both inside out.  The odds of getting your clothes inside-out should be 50/50.  Right?  Then why does it happen most of the time?

I start the coffee and we get through our usual routine; check blood glucose level, insulin injection (Al hates injections), Cheerios and banana, handful of pills. No surprises.

Looking across at Joe I decide he needs a shave and a haircut.  So I gather up all the tools and products we’ll need.   It’s been a year since he was last in a “real” barber’s chair.  You’d think going to the barber would be easy enough but with Al along to comment on the barber’s ugly tattoos or the impatience of waiting his turn, it’s just easier to go to “Jane’s Salon of Beauty”, no tip required.

By the time we finish it’s mid-morning and we still need to shower and dress.  Joe’s first in line so I get the water temperature set, towel and shower products in place, escort Joe to the shower and head for the bedroom to lay out the day’s clothes. 

It’s ironic because Joe always had great taste in the clothes he chose.  I remember back in the early 90’s just after we had moved to downtown Portland, Oregon, Joe gave me a Nordstrom’s credit card for my birthday. When the first bill came, I noted he had already racked up quite a bill.  In fact, he was on a first name basis with the sales staff in Men’s Wear.

I hurry through my shower and dress.  I’m thinking I really need a haircut myself but it will have to wait.  We have an appointment with a local in-home care agency.  I’m still not sure I want to do this but the kids keep telling me I need to get out of the house more, that I’m going to burn-out or go berserk if I don’t get a break from caregiving now and then.  I know they’re right but Joe and I have been joined at the hip (so to speak) for the past three years and I’ve started to feel like leaving Joe in someone else’s care might be disloyal, or seem uncaring.   Intellectually I know that’s not true but emotionally I struggle with it. 

Last week I had to take Joe with me to the DMV (Department of Motor Vehicles) to get the car registered in Oregon and change my driver’s license back to an Oregon license.  I knew the wait would be hard on Joe and Al but it needed to be done.

We waited long past Joe’s threshold for such things and to make it even more complicated, I’m told I need to take the written test before my license can be reissued.

Here comes the embarrassing part.  Instead of just going back to the DMV on another day to take the test, I throw good judgement to the wind and tell Joe if he’ll just wait a little longer we won’t have to come back and go through the line again.   He reluctantly agrees. 

So, I have Joe sit closer to the testing area so he won’t feel abandoned and head in to take the test.

Several minutes later I hear Joe groaning in discomfort but I can’t leave the test area to check on him.   By now I’m having problems concentrating and have missed four questions with only three more misses allowed before I fail the test.  Joe and Al decide they’ve had enough so Joe gets up and walks over to the test area.   I look up and see him standing at the enclosure wall looking down at me with his hands in the air motioning “Aren’t you done yet”? 

That’s all it takes and I promptly fail the test.   You would think I’d learn to listen to that little voice that’s telling me not to push my luck, to know when enough is enough.   I’m not really blaming Joe for me failing the test…Okay, so I guess I was a little.

It’s afternoon and the kind woman from the in-home care company shows up.  We agree on a plan of four hours a day twice a week.  Joe might not be thrilled about having someone coming to the house while I go run errands, attend a support group meeting or have lunch with a girlfriend, but if he grumbles I’ll just remind him about how much fun it was at the DMV. 

It’s evening and we’re just back from dinner with the kids. It was Mexican tonight, not Joe’s favorite but he seemed in an unusually good mood.  He’s sitting in his new chair in front of the new fireplace wearing his new slippers.  (I think we’re spoiling him.)  Maybe he’s just happy because it was a “good” day in the life.

ALZHEIMER'S--R-E-C-L-I-N-E-R Spells Relief

Easier days in early 2014

I’ve been involved with interior design and art for years, either creating something for Joe and myself or helping others enrich their own surroundings, so it’s no surprise to me that tastes change and something that was “hot” yesterday can be completely passé tomorrow.  I often advise people to avoid what I call “Pop Culture Design”.  It might have paid off for the likes of Andy Warhol but a lot of other folks got stuck with avocado green shag carpet, or lava lamps, or a black lacquer bedroom set that looked so nice in the showroom.  (I’m sure I’ve just dated myself.)

In the fifty’s a slick salesperson sold my mother a low-slung black and pink sofa.  Yes, black and pink.  Of course within a year it was completely outdated and she spent the next ten years covering it up when people came to visit.

Somewhere in LA or New York there’s a team of style-makers conspiring to create the latest trends and figuring out how to make what people purchased in 2016 seem completely out of style. 

Okay, so what does all this have to do with Alzheimer’s?

Well, I’ve been thinking about what’s happening across our country right now.  I understand the wave of senior citizens (Baby Boomer’s) or the so called Silver Tsunami that is upon us.  I see the work being done through various Alzheimer’s groups and organizations.  I understand the push to educate and bring Alzheimer’s into the public consciousness.  All of this momentum, if sustained, will change people’s view of the disease and make funding the cure a reality.  There will be no need to cover up Alzheimer’s or hide it in the darkness.  We’ll be able to face it head on, which I believe is the only way to fight it.

But, and this is a “Big But” (watch your spelling Jane), it must not be a short term trend. It cannot be the passion for a season.  The culture we live in rarely attaches to anything for the long haul. 

The “Al” I know is relentless and counting on our collective short-term attention span.  He knows he doesn’t stand a chance with people who are fighters, willing to continue the battle even when they’re tired or disappointed or when some other flag is waved in front of them pleading for their attention.

The month of June was designated “Alzheimer’s & Brain Awareness Month”, and this year many famous people and celebrities joined the campaign to End Alzheimer’s.  But every month needs to be Alzheimer’s Awareness Month because for the families living with “Al”, every day is Alzheimer’s Day, filled with mounting challenges.

So go out and buy that shiny new grey car (the “it” color this year).  But if you know someone struggling with Alzheimer’s, and I’ll bet you do, stay with us for the long haul. We’ll wave a purple flag together.  Let’s make purple the “it” color this year and every year until we’ve conquered Alzheimer’s.

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Here on the home front, we recently made a change in Joe’s medications, hoping to lessen side effects from one of the only two widely prescribed Alzheimer’s drugs.  I was concerned about the change, not knowing what the impact might be, but the side-effects Joe was experiencing were severe enough to warrant it. 

You probably know what’s coming…Stopping the medication did get rid of the side-effects, but it may also have taken Joe off the “bunny slope” and put him on the “black diamond” run heading down the hill at an increasing speed.  

The problem is, we can’t know for sure if the descent would have happened with or without the change in medication.  Maybe the stress of the move and having to adapt to a new environment precipitated the change.  Maybe the periods of lucid days sandwiched between days of confusion were about to end anyway.  Either way, we are where we are (Joe and Al and Jane), looking back up the hill to where we used to be.

Yesterday, on the way home from a doctor’s appointment Joe began to tell me about his wife Jane and something “Jane” had said that day.  So, I listened and I smiled.  But inside I struggled not to cry.  It was a surreal experience to be sitting in the car with Joe and have him talk about me as if he was talking to someone else. 

We’re still settling into our new environment and trying to empty the remaining boxes but this week we took time out to buy a new chair for Joe.  It’s by far the ugliest piece of furniture we’ve ever owned.  In the past, I would have referred to it only as the “R” word (a recliner).  It’s too big, doesn’t match anything in the room and will blow the heck out of my design scheme.  But, it’s just what Joe needs right now and he’ll love it, especially in the middle of a restless night when he’s searching for that comfortable place to be. 

Did I mention that it has electric controls?  We’ll see how Joe and Al manage that one.

Joe modeled for this one.  He's the waiter in the background.

ALZHEIMER'S--PURPLE FINGERS

Uncle Joe with Great Nephews Asa & Ari

“What did you do with all my stuff?” 

Joe mumbles to himself as he searches from room to room.  I’m not exactly sure what he’s looking for.  He walks into the living room and sits down.  Seconds later, he’s back on his feet peering out the window toward the front of the house.

“What are you looking for?” I ask.

Joe doesn’t answer my question and by now has likely forgotten what it was.  Instead he responds, “Why are they parking there?  Whose car is that?  Do we know those people?”

It turns out Joe has been looking for his electric razor but honestly, I have no idea where it is since half of our belongings are still in boxes in the garage right where they’ll stay for the next several weeks as I’m replacing flooring and managing several other small remodeling projects.

Yes, we’re back in Bend, Oregon, safe and somewhat sound.  In reality Joe’s settling into our new surroundings more quickly than I would have expected considering all the stress he experienced during the sale of the house in Arizona and the trip here.  Once again I was reminded that change is just not easy when we’re traveling through the United States of Alzheimer’s.

At one point in our trip Joe’s anxiety spilled over, certain our grandson Bryan was going the wrong direction.  Joe demanded we stop the car and turn around.  Bryan had made the trip from LA and Central California many times and, of course, knew exactly where we were going. 

Unable to convince Joe--and sensing he was becoming more agitated by the second—we decided to stop for gas, hoping he would calm down.   By the time I got my credit card out of my wallet to give to Bryan, Joe was already out of the car heading for the convenience store.  I hurried in after him thinking he might be telling the clerk he’d been kidnapped or be looking for a phone to call 911.  I was relieved to find him in front of a freezer case selecting his favorite snack “Little Dibs” ice cream.

In the meantime, Bryan (who I’ll be forever grateful to for traveling with us) was on his cell phone with his mother telling her to call Grandpa and distract him while we traveled the seventy or so remaining miles to her home.

Juli has always had the “Midas Touch” when it comes to her father, and this was no exception.  She stayed on the phone with Joe talking about sports or whatever it took to keep his mind off the road.  She traveled with us on the last leg of the trip and made a point to ensure that Joe was tracking our progress all the way to Oregon. 

As for me…well let’s just say I hope it’s the last road trip I make with Joe and Al.

I love the smell of the air in Central Oregon.  It’s unlike anywhere else I’ve been; not floral like Portland or citrusy like the desert, but fresh with complex undertones of pine, juniper, sage and bitterbrush, mixed with a hint of wood smoke. 

It’s funny how smells can bring long kept memories to the conscious mind.  One whiff of Bend air and I’m transported back to a crisp evening years ago camping in the high lakes with my parents.  Or, to a time in the 80’s standing on the balcony of our Bend vacation rental with Joe watching all five kids playing in the pool.

Today I picked blackberries from the bushes in the yard and smiled as I looked down at my purple fingers.  I was thinking about the upcoming weekend and all the people we’ll see wearing purple supporting the “Walk to End Alzheimer’s”.   We’ve entered a team in Joe’s honor and he’ll be going along with us in his wheelchair.  It’ll be a good time for both of us here in Bend with our friends and family. 

I hope I can make it through the two-mile track because it’s been a while since I’ve been able to get out and walk.  The old back hasn’t been the same since our trip to the Grand Canyon last year when our granddaughter and I took turns pushing Joe’s wheelchair half way around the south rim.  But, that’s a whole other story.

ALZHEIMER'S--UP AND DOWN THE LADDER

Back in the early 90’s, Joe and I invested in a warehouse property in Portland, Oregon.  Our plan was to build a two-story loft apartment in part of the building’s third floor and what would be the top, or fourth floor, being constructed. 

Early in the planning we met with our architect for a walk-through of the building.  He wanted us to check out the view from the rooftop which meant climbing a fourteen-foot ladder propped up against a hole cut out of the building’s roof.

Now I’m not afraid of heights, but this was a very tall ladder and the only thing that propelled me up was the anticipation of seeing a spectacular view.

We stood on the rooftop in the sunlight looking out over the city, all agreeing it would be great to wake up every morning to that view.  When it was time to go, we walked back to the ladder for the climb down. But as I stood looking into that hole, all I could see was darkness and I froze.  I couldn’t move my feet to get back on the ladder no matter how encouraging the guys were. I just couldn’t. 

Finally, after several minutes of their coaching and virtually begging me to go down the ladder, the project manager took hold of my foot, planted it on the ladder and said, “NOW MOVE”.  

I had the sensation that I was descending into nothingness, into a black hole with no bottom. (I could almost hear Steve Hawking’s robotic voice wishing me luck.)  Of course there was a bottom, but at that moment standing on the ladder looking down, it didn’t exist for me. 

Somehow I managed to get through it, but the anxiety I felt stuck with me.

Fast Forward to the present—There’s no question that moving is hard.  On the list of the most notorious causes of stress it ranks right up there next to the death of a love one, divorce, major illness and job loss (not exactly how I would rank it but close).  So it shouldn’t surprise me that Joe and Al are struggling with it.  I somehow thought I could manage the home sale and our move in such a way that it would minimize their stress and keep things under control.  I’ve planned to the smallest detail.  I ‘ve got sticky notes on the walls and calendars marked and inventory lists.  I know what’s supposed to happen, and when. 

Despite that, Joe and Al are sure things are a mess, we’ll never be ready when the movers arrive, and they’ll need to take over the process and straighten things out.  They wonder how I’ve gotten us into such a miserable, confusing situation. No matter how many times I assure them things are on track, they’re convinced I’m incompetent and can’t get it done.

I know what experts in Alzheimer’s caregiving would tell me.  They’d say don’t share details, talk in general terms and look for ways to distract attention away from your loved one’s worries.  And yes, I’m trying to do that.  But I can only deflect Joe’s constant questions so long before I go careening over the edge, giving in once again to explain what to him and Al is incomprehensible.  It’s like some kind of pressure is building and pushing me toward that black hole I don’t want to be in again.  Déjà vu.

I know I can do this. I’ve done it before, but never with Al dominating as he is today.  So to make sure we get through this I’ve sent for reinforcement.  Our 22-year-old grandson Bryan who recently graduated from college will arrive soon and will be here through the move and the drive north.  Hopefully he’ll help provide relief for some of Joe’s anxiety, and I’ll have someone to help with the heavy stuff (which in this case is a metaphor for managing Al).

I’m hoping once we’re settled Joe will relax and be comfortable again without having taken another step down the ladder with Al.  

________________________________________________

Every time we move I learn something new.  Like today, as I made calls to find a hazardous waste agency that would accept old paint.  I spoke to a very friendly woman who told me our local disposal company would take latex paint but only if it was completely dried up, which it was not.

She suggested that I mix the paint with kitty-litter (the cheapest I could buy), put it outside in the heat and that would do it.  I thought she must be joking, maybe she’d been in the heat too long, but I went to the store anyway and bought kitty litter.  Sure enough, the paint clumped and solidified quickly; and with the heat we’ve been experiencing here in Arizona, it should be ready for pickup this week in complete compliance with state rules.   Another item off the list…check!