ALZHEIMER'S--AND THERE IS GRIEF

Joe as Santa in 2003 delighting us all.

Right now I’m confused.  I’m still trying to make sense of what’s happened.  Joe is gone. I’ve lost him.  

It happened much earlier than I had expected.  I’ve cried a lot so I guess I’m grieving.  But I felt the loss of pieces of Joe for almost four years now and it brought me to tears many times before, so was I grieving then?  Is this just another layer of grief?  Did I start the grieving process while Joe was still here, while he was still with me?  I think I did.

What does “grieving” mean?  That’s not a silly question.  If you asked 50 people to describe grief you’d likely get 50 different answers.  I suspect that’s because it involves such a range of emotions, and emotions are in the abstract; you can’t touch them, or see them.  Grief might feel different based on your individual life experiences or your coping skills or what you’re grieving over.  The grieving process has no finite time-line; there’s no start line or set stopping point.

Joe was an enormously important part of my life.  His death represents an end to what has been a deep and loving relationship, and I must now somehow adapt to a new unwanted and frightening reality.  My life is different than it was before I met Joe and it’s going to be very different going forward.  After all, I was with Joe for more than half of my 68 years on earth (Did I just tell the world how old I really am?).

I feel a tremendous sadness and aching because of the unalterable fact that Joe isn’t coming back.  It’s the knowledge that he won’t be there the next time I reach out to him, the next time I have something good or bad to share with him.  (I remember that same feeling with the loss of my sister.)  But there’s also a hollowness and frustration knowing there was no miracle cure that would have stopped Al from taking Joe.  There was nothing I could do to make more time.

If there can be some relief at this point, it’s knowing that Joe is no longer struggling; that he’s done battling Al and the indignities this disease thrust on him.  

As for Al…He’s won this battle, but I’ll still be here to fight him.  I plan to remain an advocate to the cause and do my part to help find a cure for the mind monster that is Alzheimer’s.

I’ll keep writing as I slowly work through all of this.  I know it will take time; but someday I’ll be able to think back and hopefully only remember the strong, wise, confident and loving man that was Joe.

To all of you who have followed our journey, please know that your support meant so much to Joe and me.  Being the avid golfer that Joe was, if he could he would tell you to look for him again on the Great 19^th Hole in the Sky.

I ran across this piece and thought I would sure it with you.

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months or years, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall, or 50 feet tall. And while they still come, they come further apart. You can see them coming, an anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming for the most part and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.”

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.

________________________________________________

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!

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.