Tag Archives: humor

Introducing Dementia – A Glimpse from the Eyes of the Afflicted: Final Installment

Part the Third – The illusion of visual interpretation

The illustrations for this part were used in a previous post, but I’ll be sure to include them again.  These are examples I have collected that may be familiar to you but will also remind you of the tricks our brains play on us when it comes to what we see – or don’t see.   We often play games with optical illusions to see if the eye is tricked into following the focal point, of if we can focus on the reality that is hidden.  These exercises illustrate two concepts I’d like to address in this section.

As I have mentioned elsewhere in my writings, our brains do an incredible job of interpreting the world around us by using our five senses. Everything we know, after all, starts with seeing, hearing, tasting, feeling and smelling. Although that input seems seamless to us it really isn’t. In order to save “storage space” and to process things quickly, our brains pick up pieces of what we see and convert that to a whole picture. And, while it seems instantaneous it actually does take a measurable amount of time between sensory input and mental interpretation. It also creates a “story” to inform you about what that thing you see/hear/feel/taste/smell means and what you should do about it. There is only one problem with this marvelous creation – our brains lie. Yes really.

The illustrations I have included here are simple.  In the first graphic, your eye tends to believe that the parallel lines are bent.  They are not.  The radiating lines trick your brain into seeing something that is not there. parallel lines

The second illustration is that of a light bulb.  Look at the drawing for the count of 15-20 then look away.  I wouldn’t recommend much longer because the image will last a little longer than comfortable.  You will find that your eyes see a “negative” of the graphic and that the image is somewhat burned into your vision. When your mind is no longer tracking time correctly, or correctly interpreting the visual information you receive, images from your memory can interfere with the real world around you.  Again, this interpretation of reality is every bit as real in the mind of a person with dementia as things that you see are to you. lightbulb

This group of photographs is a collection of owls perched in various natural habitats where they can be completely camouflaged.  How easy is it for you to locate each owl?  How easy would it be if you could not picture what it was you were looking for and accurately compare that image with what is in front of you?  The brain can only interpret the input provided based on what it is able to draw from memory.  If that memory is corrupted or no longer functioning at all, the world becomes less and less meaningful.owls

It is for these reasons that I have learned to do more showing rather than telling in our home. The point here is to keep aggravation and emotional triggers at a minimum. For instance, I make sure that when we are at the grocery store I show him each lunch I am purchasing for him in hopes that he will eat it.  He will read about the contents and look at the pictures. For instance, he knows he doesn’t like a lot of fancy looking vegetables. I am also not always certain that he knows what is in the box.  He does, however, know that I have asked him to help me pick things out and he is more likely to eat something because of that.   Showing, reinforcing and repetition (without increasing volume) will go a long way to reducing confusion.

The important thing to understand is that when a person loses the ability to comprehend abstracts, that person’s interpretation of the world becomes filtered through an entirely different thought process than what we use every day.  If you cannot understand abstracts how can you understand that what you see may not be what is really there?  Can you comprehend that something is a shadow or a reflection?  Once you “see” something in a certain order, how easy is it adjust your view?  Even when you have reasonable cognitive control?  After all, you do see it don’t you?

This is something that I have understood in some ways for quite some time.  I think, though, I didn’t internalize it and see it for the problem it causes the person suffering from dementia.  Take for example a case where he believes that there are people sitting in our car which is parked in our car port.  Is it a reflection his eye is not interpreting correctly?  Is it a timing sequence thing and he actually sees us sitting in the car as we might look on occasion?  Is it a memory in his mind that has floated free of its roots and attached itself to the most convenient interpretation?

Whatever the cause, what the person afflicted with dementia “sees” is every bit as real in their brain as what you see and firmly believe to be reality.  Belittling or dismissing the event will accomplish nothing.  If it means that one or both of you must go check the car, check the basement, open doors or turn lights on or off, then that is what you must do.  The more confidence you build in the individual that you take them seriously; the more responsive they will be to you when you try to explain that you have handled the situation.  I constantly remind my husband that I am the only lady that lives in our home.  Although he will insist that is not true, he seems far more comfortable with that solution than having me tell him I don’t know who these people are, where they have gone or if they might come back.  Look for the solution with the lowest aggravation and emotional impact.  Sometimes it takes a day or two, sometimes it comes back.  I know that it is a constant effort for me to explain that I am “that woman” wherever and whoever I am throughout the day.

Part the Fourth ~ Humor and the art of not “managing” by not managing.

One of the things I am often asked is “how do you manage.”  My short answer?  I don’t.  “Manage” in this context sounds like something you drag yourself through, hour by hour.  Or, perhaps something that requires a huge amount of effort and exhausts every part of your being.  It is hard? Do I get frustrated?  Do I cry? Yes, oh, most definitely yes.  Do I miss him, the man I married?  Oh, yes, with all my heart and soul.  But, I am no good to him or myself if I don’t start from where we are, acknowledge the limitations and find ways to move forward.  I don’t “manage.” I find ways to enjoy where we are now.  If you are dealing with a patient, look for pieces of remaining personality.  If it is a loved one, cherish the little odd things of the day that give you something to smile about.  Above all, do not blame the person or yourself.  That individual is not sitting around thinking up ways to irritate you or to fill your days with endless requests, minor upsets, and changes in mood or attitude.  They live in a world that is no longer anchored in reality.

Once you are able to truly separate what was from what is you are far better equipped to see the lighter side wherever it can be found.  You are also better prepared to automatically seek the less emotional option in any situation.

You also find yourself more sensitive to changing moods and when it might be time to quietly step away for awhile.  Asking a person with dementia what is wrong is a futile exercise.  They do not know and you only confuse the issue by pressing.  Always seek the simplest answer and provide only the amount of information required for the task at hand.  You are not going to win a logical argument; logic no longer plays a part in the function of a brain affected by dementia.  Deflect, reassure, support.  It will be a lot easier on both of you.

I’ll close with this little tale.  One night I was sitting at my computer trying to finish something or other I thought important and I heard him digging around in our bedroom.  Doors and drawers were opening and closing – I just couldn’t figure out what was going on.  In those cases it is usually best to check on things.  When I opened the door to the bedroom he was standing there with one of our decorative cushions in his hand.  I asked him if he needed something.  Yes, I can’t find any pillows.  But, dear, there are pillows on the bed.  Well, yes, but that other woman uses them and I want you to have pillows.  He had actually made a space in the middle of the bed, next to him, where he could add a pillow – for me.  I started to giggle.  I told him I didn’t think it would be a problem, I was sure I could use those pillows.  No, he was certain, there had to be more.  So, (giggling) I showed him where we kept the extra pillows and assured him that when I got ready for bed if the pillows were taken I knew where to get more.  This seemed to satisfy him for the moment.  Somehow I got terribly tickled by the notion that he wanted all of his ladies to have pillows.  I giggled so hard I got tears in my eyes.

Humor.  It doesn’t mean you are laughing at your loved one or a patient.  It means that you look at life with a sense of the practical joke it can sometimes be.  It is what changes things from “managing” to living through a different phase of your life in the best way possible.

This series is now being presented as a talk to several organizations in the Seattle metro area.  If you would like someone to speak to your organization, then by all means leave a comment.  Either myself or my hard-working promoter would be happy to make arrangements.

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The File Cabinet Caper – Part I

Photo courtesy of DaniJace of WANA Commons

Photo courtesy of DaniJace of WANA Commons

Well, at least some of my friends know that this week has been one harrowing experience.  The storm began to brew on April 23 when I finally broke down and hired a locksmith to come fix the lock on one of my husband’s 4-drawer lateral file cabinets. No, this is not the fire safe cabinet introduced in my book; this is a completely different tale.

I had, actually, made an effort to remove the lock so that I could deliver it to our local locksmith and have a key made.  I did not get very far in this project before I realized this was not a simple task.  Thus, the call to the kind of locksmith that travels around in a vehicle full of lock stuff.

Very nice young man shows up and looks at the lock.  After-market – old, super security lock – can’t make a key – must replace lock.  Sigh.  So, he extracts the lock and leaves to search for a replacement lock.  Evidently such a thing does not exist.  Said nice young man has researched suppliers from Canada to California and who knows where else.  Is this something that you can explain to a person suffering from dementia?  Sure; about 50 times a day.

Meanwhile; I discover that he (my husband) has an issue with the two file cabinets and are perfectly fine, have keys and lock rather nicely.  The drawers only work certain times of day.  “See, I can’t open this one.” “Sweetheart, you already have a drawer open.  You can only open one drawer at a time so it doesn’t fall down on top of you.” “Oh. But they only work certain times of the day.”  This conversation went downhill in a hurry.  I think I’ll leave out the various names I heard “that woman” called the next morning.

Back downstairs we go.  “Does this one work?”  Note to reader, this 4-drawer lateral file cabinet is of the sort that the front panels rotate up above the drawer and you can see what is inside.  You can still only have one drawer at a time pulled out, but you can see what is in the drawer.  And it locks and we have a key. “Yes, this one is fine.”  Okay, next step.

Knowing that there is no way on earth he could comprehend what he was looking at by viewing a picture on the computer screen, we went on a shopping trip today.  For reasons beyond me neither office supply store had a storage cabinet in the display area.  So, after a try at a department store kind of place, we arrived at a big box hardware store (no ads in my blogs unless you are an author).

In aisle thirty-something we locate what I was looking for, a locking storage cabinet.  This appears to be acceptable, but it is too tall.  Why, because it is bolted to the display counter and the feet are barely at eye level.  Yes it would be Okay, but do we have a ladder?  Sigh.  “So, if I could find one that is about so (5 ½ feet) would that be Okay?”  “Yes, I think that would work.”  (Shudder, “think it would work” always gets me in trouble).  I proceed to carefully explain my plan to go home so I can shop price and order the thing on line.

Almost out the door, “Where are we going?”  “Home.” “Aren’t we going to get it?”  Now, the cabinet that we are looking at is 30” X 18” X 72.9” – we are getting three of them.  I drive a Saturn Vue.  I will grant we have a rack on top, but I don’t see me loading these steel creatures on top of our car, driving home, and then packing them down our stairs.  This is a concept that will be mentioned later.

Finally, we manage to get home and I start looking for alternatives.  Poor lady at online office supply store, two of the cabinets I ask about are out of stock.  So, I settle for something wider (do you think he will notice)?  Delivery planned for Wednesday.  Duly marked on calendar.  Next step.

“Will you go with me?”  “Go where?” “I tried to tell her (the woman that took him – that would be me) that we could talk to the lady up front and get the one we wanted.”  “Sweetheart, I can’t move cabinets that big.  I need help.  And there are things in the room we need to get out first.”  “But I know where we can get it.”  I think I managed with pictures and calendar markings to explain that the cabinets were on the way.  Nice strong men would move them for us, and I wouldn’t have to try to haul them home.  I also had to explain that these were not the kind of things we put together at home.  In the past I have purchased a number of bookcases, hauled them home, moved them in piece by piece and then assembled them.  Won’t work here.  Somehow we managed to move on.

The filing room downstairs contains 4 4-drawer lateral file cabinets plus 4 4-drawer vertical file cabinets.  Something has to move or the new cabinets aren’t going anywhere but the hall.  That means that the things in those cabinets must be moved.  “Where.”  “Please put them here.”  “Why?” “Because we need to use the back door.”  “Oh.”

You have to realize that all this paperwork only represents about 70-80% of his research files – the rest is still in boxes.  He spends a great deal of time moving this stuff around.  Sometimes because people tell him he can’t have a certain spot (so I put his name on the door) or because someone complained about how he did it (I probably made a suggestion).  But, for the most part, over the past month or so he has been trying to take files off the book shelves and put them in the filing room.  This is a good thing.  But now we have to undo that process in order to try to resolve the problem of the file cabinets that “don’t work.”

“Victoria,” you may ask, “why are you replacing perfectly good file cabinets in an effort to fix this problem that exists only in his mind?”  Probably because I like to carry on conversations, complete my work for my clients, and even write a blog or two.  He has been camped out in my office many times in the last week discussing and re-discussing various aspects of this problem.

Do I really maintain this rather oblique sense of humor during these episodes?  No.  And I really don’t know where this one is going.  I’ll have to share part two after Wednesday when, hopefully, the new cabinets are here.  I am also hoping I manage to find a home for the old file cabinets which will be under a tarp on the back porch because there is nowhere else for them to go.

If you don’t hear from me, I’ll be in the corner of my office staring at the ceiling and mumbling campfire songs.  Forgive me if I’m drooling.

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Reflections ~ Post the First The Wizard behind My Curtain

Elbow Falls, Alberta
Photo by Victoria Adams

Over the past several weeks I have had conversations with several people who have read my little book, Who I Am Yesterday.  Some of those folks reported tears, a few laughs, and a bit of wonderment.  I have also engaged in a number of conversations with online friends who say something along the lines of how amazing it is that I manage to keep my sense of humor while being a caregiver 24/7.  I admitted it was a process.  Then I thought about it; that was only a partial answer, and not worthy of the person who asked it.  Thus, this new series for my blog: Reflections.

In the classic film The Wizard of Oz Dorothy and her friends suffer through many trials and tribulations until finally they reach the palace of the fabled Wizard.  With the help of Toto we discover that the wizard is nothing more than a little old man parked behind a fancy machine trying to scare the dickens out of Dorothy and her friends.   As it turns out, he has real and useful advice to provide each and every member of her party.  My wizard was humor; it just took me awhile to find him in the cave of my mind.

As mentioned in my little book, I am bi-polar.  High-functional, un-medicated, but, nonetheless, bipolar.  For the vast majority of my life I have fought depression, major migraines and the exhausting rush of “I can do anything in the next 12 hours.”  No, you can’t; there is a tall cliff to fall off the moment the high starts to dissipate. And that crash is always hard.

In the early 70s this disease was not easily diagnosed.  Even today it goes unresolved because bi-polar people rarely talk about the highs; they only see a doctor when they are depressed, if at all.  My doctor of the time decided the best way to handle my “anxiety” was to pump me full of Valium.  Lots of it.  Mix that with a little alcohol and a bad marriage and, well, you get the picture.   Depression doesn’t begin to describe the trip I was taking down the rabbit hole.

Then, one day, I had an epiphany.  I realized that the sun was going to rise the next day whether or not there were singing birds and blooming flowers in my little corner of the world.  The globe would not stop spinning if I couldn’t make the bills, couldn’t straighten out my marriage, couldn’t find and murder the demons that pursued me.   Every last Valium in the house went down the toilet – yep, cold turkey.  I waited a month for the massive depression to lift and to have a clearer vision of my world and then filed for divorce.

Watershed though it may have been, it was only the beginning of the journey.  I learned that my “condition” was not something to share.  For whatever reason, the people I allowed even vaguely close to me during the next few decades found that weakness and exploited it.  A person who is susceptible to depression can be easily manipulated and controlled.  You learn the hard way to sew that curtain tight and not let a soul know what’s behind it.   Behind that curtain was a very dry sense of humor; often times it was deliberately opaque.  My little wizard, building the walls to protect me.

Fast forward some 20 years or so and I meet my current husband.  He was an incredibly brilliant man who, unknown to me at the time, was suffering from his own mental demons.  In retrospect, perhaps that was part of what made us soul mates.  Part of what gave us such insight into each other’s worlds.  He saw the bi-polar tendencies and the depression even when, by then, no one else could.  One professional that I knew at the time told me that he knew I was bi-polar but in all the time he had known me he had never seen it.  I fired back, “And you never will.”  My new found friend waltzed into this fortress and clearly identified the cracks in my wall.  Instead of using those weaknesses, he taught me how to control them.  It was he who taught me how to spot the “rising tide” so that I could slow down and make the final leap off the cliff so much smaller and easier to handle.   After many years together it was with his help I conquered the depression.   But, my little wizard stayed with me, growing into a merrier, mellower sort of fellow.

It was sometime during those years of growing that I was introduced to a movie by a different friend.  It was a movie that I consider to be a perfect model of depression and how to survive it:  The Edge with Anthony Hopkins.   Briefly, the plot involves a billionaire (Hopkins) his fashion model wife and two other men who fly to a remote Alaskan lodge for a photo shoot.  During a plane trip to scout out some special photo opportunity the plane runs into a flock of birds and crashes killing the pilot.  The three survivors are faced with surviving in the Alaskan wilderness while being pursued by a Kodiak Grizzly.  Some of the scenes are rather graphic.  There are many gems of wisdom from the screen play that impacted my thought process, but we will save them for other conversations.  The scene I have in mind for this article is at a point where one survivor has been attacked and killed by the bear.  A rescue plane has flown overhead but does not appear to see them.  Hopkins’ companion starts to break down, bewailing the probability that they will never be found, the bear is going to kill them and no one will ever know what happened.  Depression 101.

In the face of his companion’s meltdown Hopkins’ character says something out of the blue: “Fire from ice.  Did you know you can make fire from ice?”  He has to repeat himself a time or two.  This actual quote is one of those gems I want to save for later.  However it does get his companion’s attention at which point Hopkins is able to explain something very critical.  The goal is not to get back to the lodge; the goal is to survive today.  I am sure there are any number of professionals who try to tell their patients that they only have to get through today.  What happens in a moment like this is you are presented with a graphic illustration of what it means to “get through today.”   You cannot change the circumstances, but you can survive them.   Do not fight the quick sand; find a way to float.  Keep floating long enough and eventually you will find a way to the lodge.

Again we move forward many years and suddenly, the world I had grown so comfortable in, the world I shared with my best friend and husband began to unravel.  Within a few short months of noticing very real changes in his mental capacity his doctor confirmed vascular dementia.    Some of the details of my mental process during this time period are provided in the book.  Suffice it to say here that I became a basket case.   My whole world was crumbling and I had no notion of what I could do to stop it.  Then, with the help of some friends, something interesting happened; I realized I had a goal.  Get through today.

It was probably some four or five months later along this new path that I started to put pieces together that would do more that “get through today.”  I realized that we could still joke, enjoy some of the things we had once loved and live a life rather than just survive.  Not the same life, but a life that could be lived and enjoyed.  That is when my humor, my beloved little wizard, came back home.  This time that humor was not a shield, it was a well seasoned support.  And so my friend, soul mate, lover and husband again showed me the path to stronger living.  Even with a failing mind.  I manage because I don’t “manage,” I simply live the life we have the best way we can and with as much humor as we can find.   No, I am not a paragon of virtue that never has an issue and always soldiers on.  But, for the greatest majority of our time together, we do just fine.   Click, click, click, “There’s no place like home.”

For nearly two decades my husband and I had spent numerous hours talking about philosophy, religion, science, human creativity, the vast reaches of the universe and the actions of the smallest particles known to man.  He would gently nag me from time to time to publish, to put my ideas down on paper, to express those things that my inner eye had seen, what I had felt and learned.  I always said, “some day.”   Partly due to my recent experience with his illness I have been driven back to those old notes and half finished pieces of manuscript.  I have watched as his mind changed and studied whatever seemed relevant to try to understand the way his world was changing and what impact any previous mental issues may have now and in the future.   So, I learned more, thought more, saw more.  Thus, as he wanted, I will write.  If I can no longer share my thoughts with him, I will do as he asked and share them with whoever will listen.

Thank you for visiting my blog and watching my journey.  Perhaps my next publication will fascinate and interest you in some way.  I certainly hope so; you will be sharing some parts of the glue of a very special relationship.

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