ALZHEIMER'S--A Send-Off for the "Old Sage"

Joe's hands as he held the latest generation of our family, 2015

I haven't written anything into my blog since December 5, just been busy with all the things that go along with a loss.

This Saturday, January 14^th, we're gathering at the golf course Joe so loved to give him the send-off he requested, a party not a funeral. Like all the parties we hosted over the years, there will be food and drink and music...and cake. I know there will be many stories from family and friends. (In Joe’s 78 years he gave us a lot to talk about.)  And before the party ends, we'll toast the "Old Sage" or, "Joe Cool" as he would have preferred to be called.

I'll have a lot to write about.

Somehow, I think "Al" may be tampering with the weather because the forecast is grizzly with more snow on the way. Al was like that you know.

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.