ALZHEIMER'S: THE SOMEDAY AFTERS

Joe down by the river 2015

I’ve always looked forward to the next big adventure, the next thing that would happen after completing whatever was currently in focus.  I call it the “someday after”.  Humans seem to be wired for the someday after.  How else would we be motivated and inspired to dream of the future if we didn’t manifest hope and optimism for what comes next?  It’s part of our DNA. 

Not once did I say, “Someday after one of us is diagnosed with a devastating disease.”  Thankfully, that’s just not the way most of us think.  Oh, we know there’s the possibility of bad things happening.  That’s why we buy health and life insurance and get regular checkups.   But with the life expectancy in the US most of us assume we’ll live full, long, mostly healthy lives.

 

In a perfect world, the someday afters would just go on until we’d enjoyed life to death.  (Yes, the pun was intended.) That isn’t the case if the Uninvited Guess (Alzheimer’s) shows up.

Let me introduce you to Al, the great disruptor.  He crept slowly and mysteriously into our lives, and in his sinister way began to chip at our someday afters.  He tries to turn optimism into apprehension and hope into fear.  He fogs the brightness of the future and conspires to make us focus on the worst aspects of things.  He is at his best when we are at our lowest.  He is an undisputed creator of pessimism.

So how do we fight what is so essentially evil and destructive to our someday afters? How do we find ways to restore a disposition that looks on the brighter side, to be hopeful, to be our ambitious selves?

I’ve never understood the whole “bucket list” thing, where people who sense their mortality suddenly develop a fever to experience things that may have been suppressed or delayed.  Joe and I have been working through our “bucket list” for over 35 years and I can assure you that when we started, we weren’t thinking about mortality.

We’ve had wonderful adventures together and individually; like the time we were living in downtown Portland, Oregon after building a loft apartment out of an old warehouse (that was truly an adventure).  And there was the time Joe fulfilled a dream to play in a pro-golfer like tournament in California.  He still talks about the fabulous golf courses he played.  His hole-in-one story may live on forever with as many times as he’s told it. 

I was fortunate to have my own art exhibits and to act in and direct community theatre productions.  We gratefully became grandparents eight times.  There was travel to other countries and unforgettable (well I thought they would be unforgettable) experiences.  The point is, we’ve already done most of the things that would have been on a bucket list had we had one.

What would really restore our outlook, and would be worthy of being at the top of any bucket list we might have would be to surround Al, hog-tie him and throw him in the briar patch.  But, since we don’t have a briar patch and a cure for Alzheimer’s is still in the future, we’ll have to be content to focus on things more practical. 

For now that means shortening the horizon, refocusing the lens and thinking less long term.  In that respect, I’m actually mirroring Joe’s new way of thinking.   I’m not saying that I’ve stopped considering the longer term future but, I don’t know what life will be like a year or two years from now.  For that matter, no one does.  I just have to get used to living with the uncertainty that Al dragged in.  It all reminds me of a famous Yogi Berra quote, “If you come to a fork in the road, take it.”

 So the question is:  How can we be happy in the here and now?

 

Well, each week we’ll assess our status and decide what’s going to work over that amount of time.  It may be something as simple as going to the golf course and hitting practice balls (I sure wish Al could swing a club).  Maybe it’s buying tickets to a local theatre production, or having a glass of wine with a neighbor.  Whatever it is, it has to be something that we can look forward to and is manageable within Joe’s current abilities.   (Of course, if you asked Joe he would vote for a trip to Baskin and Robbins.)

The times they are a changin’.  Thinking less about the future may just be a good thing.  For now, our someday after doesn’t need to be any further away than the day after tomorrow.

Last week, we had a new roof put on the house.  The noise and disruption could have created problems for Joe and Al but it turned out to be a non-event, except for the ball cap that one of the workers left on the roof.  Joe spotted it and was pretty sure that if I held the ladder he could get up on the roof and get it.  There’s that confident ambitious Joe I miss so much.

Joe with daughter Juli 2014

ALZHEIMER'S: TAKE THE WHEEL AND DON'T LOSE YOUR GRIP

My Dad in 1949

People who know me won’t be surprised to hear me say I was a Daddy’s girl.  As a child, I spent many hours in the workshop with Dad.   It wasn’t just tinkering, we always had something important in process, some project to finish, some new thing to create.  He was a great teacher of how to do things and not be afraid to fail.  If something didn’t work right the first time, he just tweaked it until it did, until things fit. 

Back then I had no idea I was learning skills that would serve me well into my adult life.  I remember being in the orchard watching Dad drive a tractor, and out of the blue him pulling me up onto his lap in the driver’s seat saying, “Here, you take the wheel.”  It was thrilling.  We drove through rows of trees and I bobbed up and down like a cork, trying not to lose my grip on a steering wheel that was as big as I was.  “Hold on, you can do it,” he shouted, “now turn the wheel!”  And so I did. 

I was only about six years old at the time, and quite small for my age. But on that day I really thought I drove that tractor; I took the wheel and didn’t lose my grip.  I told everyone about it, that I could drive a tractor.

Over the years, that kind of confidence has been important to me but never more than it is now.

Joe and I had always shouldered life’s decisions together. We had a “what do you think?” relationship, with a lot of conversation about possibilities before big decisions were made.  We trusted each other’s judgement and really used our collective experience to our advantage.  I’m not saying that we always agreed with each other.  Good heavens no!  I remember having lively discussions about a lot of things but, in the end, we’d come to an agreement and we appreciated being able to collaborate. 

Things began to change after Al (the Great Disruptor) arrived. I’m now feeling the full weight of decision making; like what happened last week as I contemplated a new roof.  While I’m in the kitchen talking with a contractor and planning how to approach the roof replacement, Joe is sitting in the living room reading, not really tuned in to what is happening.  In the past, Joe would have been right with me asking questions, gathering details, and figuring out the costs.  (I used to call him the human calculator because he could do the math faster without a calculator than I could using one.  Sometimes it was downright annoying.)

It’s not that I can’t make decisions, or put plans in place and go with them. It’s that I don’t like our life being driven solely by my decisions.  As Joe’s caregiver that’s really what it amounts to, I decide what’s good for us.  Some days it’s a little daunting and there are times when I feel intimidated in the knowledge that if I make a mistake it affects both of us.  And, of course, I’ll be the one sweeping up the mess.

Okay, let’s keep this in perspective.  There are single parents all across the country who are managing families without a partner’s support.  I’m not talking about financial support (although that is often the case), I mean lacking an emotional and intellectual “partnership”, going it alone.  That’s got to be harder than what I’m experiencing, especially when young children are involved.  I have a husband who loves me, and if not for his struggles with Al, he would be right by my side helping me figure all of this out.

It’s times like this that you draw in a breath and dig down deep to who you really are, and remember the things you learned from the people you trusted. I had wonderful parents who made me strong and independent.  There were mentors that coached me, friends that encouraged me, and things that challenged me.

If I close my eyes and listen, I swear I can hear my dad’s voice from a distant corner of my mind, telling me that I can do this and to not give up or fear the unknown.  So, I guess I’ll climb back up on that tractor, take the wheel and get a grip.  I may bounce a bit going down a road that’s not well paved but, I CAN DRIVE THIS TRACTOR.

Now, how do I shift gears on this thing? 

ALZHEIMER'S: 20/20 HINDSIGHT

Joe and Jane (without Al)  in 1987

 It’s easy to be knowledgeable about events after they happened, but sometimes very difficult to catch things as they unfold.  I guess that’s where the old axiom about 20/20 hindsight comes from.   

I always thought of myself as insightful, with keen instincts and maybe even a little intuition, always able to analyze situations and draw conclusion without reams of data.  In my career, that was what I got paid to do.  So why did it take me so long to understand what was happening with Joe cognitively?  Why didn’t I connect the dots earlier?  It isn’t as if Al just showed up one day and said, “Here I am!”  There were signs, lots of signs stretched over several years.  In hindsight, we were tripping over them.

In the course of educating myself about this disease (Al), I’m seeing a common theme, and it isn’t just denial or the “ostrich syndrome” (sticking your head in the ground rather than accepting some uncomfortable facts).  It’s more complicated.  It’s more like working on a 1000 piece puzzle without the aid of its picture.  I’m going to call it “BLEAP” (Blocked Logical Early Al Perception) syndrome. (And yes, I just made that up.)

If you have BLEAP like I did, you may see lots of little pieces of Al but never a complete enough view to connect things.  I’ve spent some time thinking about this and how I might help others in a similar situation benefit from my hindsight.  I know it’s dicey to think I can save someone else pain by sharing my own experience (it doesn’t work all that well with childrearing).  But I’m willing to give it a try.  I also know that everyone’s path through this disease is different.  I haven’t attempted to create a diagnostic guide, these are just my own observations.  I’m not Dr. Gayer. 

I’ve learned that Al isn’t just a memory disease, it’s a brain disease that affects every aspect of your being.  Researchers now believe that changes in the brain may start as early as 10 to 15 years ahead of any symptoms.  They’ve developed a set of seven stages to describe the symptoms and progression of the disease.  I believe Joe was in Stage 1 up until about 2006.  During this period he had no notable symptoms.  He was just Joe, my Joe.

In Stage 2, symptoms may be very subtle, with only mild forgetfulness.  In Joe’s case, the changes just seemed to be normal aging.  His social skills and mood underwent changes, but again, only in hindsight would I have thought them to be abnormal for his age.  After all, I had never lived with anyone as old as Joe (I had to get that one in). 

There were subtle changes in Joe’s logical thinking and ability to do things in a sequence.  Anything that required assembly took longer to accomplish but still, nothing that would have sounded an alarm. This stage went on through 2009.

During Stage 3, symptoms showed in Joe’s inability to solve problems or learn new things, and in planning tasks.  Social skills and temperament began to be more of an issue.  He stopped enjoying playing cards with friends, and there were problems with his patience level on the golf course.  It was during this period that driving and judgement also began to be problematic.  It was 2010 that he drove the golf cart into the garage door, twice. 

More memory issues occurred but Joe was able to compensate to the point that he could hide it from most people.  He obsessed about being on time; his calendar was never far from his side.  (I now understand that it’s common for people with high intelligence to find ways to compensate and mask early memory issues.)  Joe began struggling to find the right words and finish sentences.  He started disengaging from group conversations.   I would characterize Joe as having “grumpy old man” syndrome and maybe needing an attitude change.  He seemed to judge quickly and grow more negative, which was not “the normal” Joe.  This went on through 2012.

Early in 2013, I started questioning what was really happening with Joe but still hadn’t connected all the dots.  About that time I was doing community theatre; Joe was spending more time at home alone watching TV.  It seemed like he wanted to be alone, like he didn’t miss me.  I noted changes in his posture and gait.  It was harder to get his full attention, and I thought his hearing must have worsened. 

Joe had always managed our personal finances and paid household bills.  He started making errors in the checkbook, sending checks to the wrong places or sometimes forgetting to enclose them all together.  In the summer of 2013, after a couple of incidents on the golf course and several weeks of him getting up in the middle of the night thinking it was morning, Joe finally agreed to go to the doctor.  I believe it was about this time (mid October 2013) that he moved into Stage 4.

It is in Stage 4 that most people who have the disease are diagnosed and sometimes misdiagnosed.  In Joe’s case, there was little doubt about his diagnosis.  And, you guessed it, this was the point where my own BLEAP syndrome cleared up completely.  Completely!

So here we are, slowly moving into Stage 5. And this is where I’ll stop, because I would no longer be writing with the voice of experience.   We aren’t through this yet, and I won’t be trying to turn the pages faster to get to the ending.  There will be a cast of characters that we’ve yet to see and the plot will twist and turn.  I’ll take notes and try to help with any BLEAP syndrome that might be out there.  That’s all I can do.

Someone pointed out to me that my blog has less humor and isn’t as lighthearted as it started out. I think that’s true.  I’ll have to work on that, because there are humorous things that happen every day. Sometimes they just don’t extend to the fingers on the keyboard.  Like this week, when Joe put on his pool shoes (yes we wear pool shoes) and forgot to take off his socks before he got in the pool.  I
could have written about that.  Well, maybe it wasn’t that funny, maybe you just had to be there.

Oh well.  I think the coffee is ready.

ALZHEIMER'S: THE EDGE OF REASON

Joe at the edge of the Canyon June 2015

 

The word edge typically means the place or line where something stops, but if I say I'm on the edge of my seat you know that I'm ready for something, I'm anticipating something.  I'm also edging if I move carefully, gradually, and inch my way.  If I have an edge I might have an advantage that makes me successful, or I could just be upset or angry.

It's very hard to reply on words when they can mean so many different things, yet we're stuck with them.  Language, whether written or spoken, is our single most important form of human communication.  Or it is?

If you take away words or the ability to understand words, can you still communicate?

Several years ago Joe and I spent a month on the island of Curacao in the Caribbean.  We rented a villa that came complete with a Polish cook, housekeeper, and butler (quite a treat for us).  Only the butler spoke English.  A couple days into our stay, the cook tumbled down a flight of stairs and broke her leg.  I was the only one there when it happened, and of course I speak no Polish, Dutch, Papiamento, or any other language other than English (I'm not proud of that).

In spite of having no words with which to communicate, I managed to get us to the hospital, complete a complicated insurance process, and describe the incident to the doctor.  Consequently, the cook got treatment.  Back home in Oregon, as I was telling this story to my daughter she said, "So Mom, when did you learn to speak Polish?"  Of course I didn't.

That was the first time I really understood that words sometimes aren't necessary.  If you don't have words, you just do what it takes to communicate.

I was reminded of this after Al moved in and words began to fail Joe.

At first Joe struggled to find the right word.  Then the right words started to go so he began substituting words that had similar meanings; "patient" might became "client" or a "steering wheel" would come out "driving circle".  If I listen intently and patiently (which I sometimes don't) we still do fairly well with these creative modifications.

Occasionally no words come to Joe, so in that event he goes with whistles or clicks combined with hand gestures, and generally still manages to converse.  You might not know this, but a twirling index finger and a left side nod of the head with raised eyebrows means, "Where's the restroom?"

A while back I read that when caring for someone struggling with Alzheimer's, touch is a very effective way to communicate.  It's true.  I start the morning with a big hug for Joe and before we've spoken a word I can sense his mood.  If I get a "leave me along" response, I know he's had a rough night with Al and I'd better give him a little extra space (maybe another zip code).

A couple of months ago I started trimming Joe's hair and beard, for no other reason than I like doing those kind of things for him.  (Well, that's true, but it's also because going to the barber shop is no longer a pleasant undertaking.)

This week while doing the trimming and shaving I noticed something interesting.  Joe really enjoyed his "spa" experience.  He relaxed and just let me pamper him.  In fact, he relaxed so much that I had to keep reminding him to sit up straight fearing that he might just fall off the bar stool.  In a non-verbal way, I was able to communicate to him that he is okay, that he will be loved and cared for no matter what happens next.  I can say those words to him, but he might not understand at such a deep level with all the other Al chatter going on.

There may be a good definition of the term "the edge and reason" but to me it means reaching the point where logic and reality become thin, cracked, and brittle, and you know that you'd better watch your step in a fragile or unstable environment.  If you're nearing the edge of reason you move carefully, inching your way along.  Since Al seems to have two left feet we know that if we aren't careful he might step into something and pull us over the edge with him.

Words are flimsy and inadequate to describe how happy I am that Joe is here on this side of the edge of reason, looking ahead at it still in the distance.

This week we celebrated Joe's 77th birthday but, just like two kids on summer vacation, today we're off to the pool with noodles in tow.  We're quite a picture.

ALZHEIMER'S--THE ART OF LOSING

Joe and Al at the gym June 2015

My Inner Self:  What are you afraid of?

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

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

Me:  I’m not afraid of anything.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ALZHEIMER'S: TRAVELING WITH THE GIRL SCOUT

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

Grandpa Joe and Hannah in 2000

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This next message is for the newspaper delivery guy: 

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

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

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

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

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

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

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

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

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

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

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

The Chili Cook-off in 2005