Tag: #Alzheimer’s World.

Covid Busyness

It is hard to live in two worlds. Yet that is what you do when you are a caregiver to a loved one with dementia.  Your two worlds are the real one and Alzheimer’s world. Add in a third which is the Covid 19 virus world pandemic and that existence becomes even harder.

I believe that the next world pandemic will be a mental health crisis that will be a marker of the new normal, whatever that is.

Now that I am about to get my 17th Covid test I am convinced that my mental stress will come from having that elongated Q-Tip being swirled around somewhere north of my eye socket and approaching my brain via a nostril.  I mean, really!  Yet I go trotting off again because I need to have that negative test result to be able to visit my Bert.

To add insult to injury, another edict has come down from the Ministry of Long Term Care (LTC) that the tests are now required to be done every seven not 14 days.  This might mean a test every four days as there is no guarantee that results will be available in the touted 24 hour turnaround window. 

I call this Covid busyness of an insane Government.   The LTC Covid-19 Commission released an interim report recommending that hours spent by staff on personal human contact in direct care be increased.  The Ministry’s response was that it would aim to achieve this in FIVE YEARS and then it announced that testing for all staff, essential and designated caregivers would be required every seven days.  Essential caregivers would have to show the negative test result to be able to visit their loved ones. No negative test result, no positive visit.

In one devastating swoop incompetence met up with insanity; privacy issues went out the window as you must show your medical record which will be kept on file; already stressed staff will be going for testing instead of caring for residents; the amount of time now spent on care will be reduced going counter to the recommendation of the need for more time for residents; critical social contact necessary for resident’s well being may be curtailed if test results are not timely; any help given by family essential caregivers will most likely decrease if test results are late, lost or testing appointments missed for any reason.

I surmise that if your loved one is in a large or medium sized home, testing every seven days of every staff member and others would take away a good percentage of the little time already being spent with residents.  After all, the everyday workload would not be reduced but nowhere did I read that staff would be increased to allow for this weekly testing..

There is talk of a new fast test protocol where results would be available in twenty minutes but until that happens, it is just palaver.   There is always talk and more talk but no action.   If this is action then five years could become ten or perhaps never.

Am I opposed to testing? Certainly not, hence 17 and counting. However, it seems this is just another patchwork idea to say: “We are doing something.” without looking at the efficacy of the ‘something.’

My Bert too has some Covid busyness going on.  He is so chatty my head spins trying to keep up with his forays into all subjects within one sentence stream.  This is good, but it is as if he was so devoid of conversation that now I am available he has an audience of one to verbalize all the pent up thoughts in his head. Like the politicians he is suffering from verbal diarrhea of a different ilk.

Most of my Bert’s conversations are born in hallucinations veering into delusions and confabulation. Interestingly enough I can follow these strains of errant thoughts as in the telling there is usually some hint of reality of past shared experiences.  If there isn’t I just agree.  I mentioned this to a friend, a professor of Ophthalmology, who suggested they may also be complicated by his having advanced macular degeneration and thus experiencing Charles Bonnet syndrome.

Being aware of my penchant to hear disjointed streams of words, as example, hearing Baker’s yeast instead of Baker’s cyst and emotional liability instead of emotional lability, I asked her to spell it.  Good thing she did as the Bonnet is pronounced Bonay.  I might have still been looking for Charles Bunny. Briefly:

“Charles Bonnet syndrome refers to the visual hallucinations caused by the brain’s adjustment to significant vision loss. It occurs most often among the elderly who are more likely than any other age group to have eye conditions that affect sight, such as age-related macular degeneration.”

No wonder my Bert is busy.  Not only does his brain have to deal with Alzheimer disease hallucinations he also has hallucinations caused by macular degeneration and living in Covid-19 world too.  Crazy world and crazy life.

I too have Covid busyness.  Besides trying to figure out the intricate permutations of my Bert’s brain, I find that I am becoming more of an advocate for those living and working in LTC hence this somewhat political slant in my thinking.  If only politicians would recognize that their role is to advocate on behalf of their constituents and enact legislation that benefits them. 

My friends are also Covid 19 busy.  Ask what keeps us all so busy and we are stumped to come up with a definitive answer.  My answer is I have found an infinite capacity to be busy doing nothing.  That is not all true.  I believe that Covid 19 has shown us a different kind of busy where the simplest task stretches out to fill an inordinate amount of time disproportionate to its difficulty.  This is also coupled with an inertia that goes right down to the bone.  Everything is slowed, takes more effort than it should, more thought, and care.

We seem to have our fingers hovering over the pause button. It is a long frustrating pause but it is also a time to dream and breathe and wonder.  It is a pause to create, to be creative, to care and to act.  

The Meander: If we care enough perhaps our tomorrows will be brighter than our todays and we may just be able to avoid the next pandemic.

Kaleidoscopes

It was my birthday.  There was a party.  I got presents.  The best and the most wonderful present was a kaleidoscope.

How magical.  Every colour of the rainbow and every hue imaginable, jumbled, tumbled, scattered, reformed then rearranging themselves into fantastical patterns, symmetrical, ordered, pleasing.  Awesome!

Disorder tamed and changed into order.  A chaotic profusion of wild, disparate colours gathered and sequenced into beauty, a moving spectacle that you controlled simple by a turn, a little shake, the merest tremor and new patterns emerged.

Every different settling was new, surprising, and magical.   There were enumerable moments of discovery filled with joy.

I have a new kaleidoscope.  I am desperately twisting, turning, and shaking seeking its order.  I want the chaos of my life in this kaleidoscope to fall seamlessly into place, into an order I can understand.  My new kaleidoscope is faulty.   No matter how I turn and shake and try to encourage it to form Tiffany glass creations of beauty and unity, I fail.

I can see bits and pieces scattering as they fall but they refuse to coalesce and, if a few do by chance, the result is disordered.   It is a fusion of confusion.  A hodgepodge of the past familiar intermingled with hiccups and blanks of the present.   What is created is strange to me though the pieces are familiar.   I have failed the course of making sense out of nonsense.

My Bert is my new kaleidoscope.  The beautiful patterns we used to make together are now no more.  He is a mirror that has lost its ability to reflect; a dancer without coordination.

As a child I wanted to go into the kaleidoscope to see how it worked.  I wish I could go into my Bert’s brain to see how it is, see how it works and to see if there is anything I can do to fix it.  Then again: “If wishes were horses, beggars would ride.”

The Meander: I kept my childhood kaleidoscope for a long time.  It delighted and entertained.  Then I lost it.  My Bert and I have known each other for 52 years and have been married for 50 years and counting.  I suppose that is a long time.  He still tries to delight and entertain.  It is an effort.  I have not lost him.  Not yet.

Chatterbox

I have been called many things over my lifetime but chatterbox is not one of them.  Yet lately that is what I call myself, to myself.  Why would I do that?

I am Canadian so I will blame the weather.  This has been a particularly harsh winter.   There has been much wailing and gnashing of teeth (mine) as my Bert, whose only contribution to our travel adventures was: “Where are we going next?”  uttered before we had unpacked the bags from our last trip, is no longer allowed to travel. I had no idea that I would miss our travels, our winters away in some warm place or on a ship so very much. So here we were stuck in winter in our wonderful but COLD country.

My Bert would often say that Canada is the best country in the world except for the weather. I agreed, but would temper my enthusiasm with the thought that if Canada had  perfect weather it would be perfect and there is no such thing.

Here is another observation that my Bert would voice often: “Paula is always telling me that I talk too much but she talks too.”  “Yes, I talk but not anywhere as much as you and in any case you are such a talker, someone has to be the listener” I would answer. Then with a laugh he would say: ‘That is why we have the best marriage. I talk and you listen.”  That was said with a tone to make it unbelievable.  Yet, all that was true.

My Bert is really an open book and loves to talk.   Many a time we have been to a restaurant and before dinner is completed the entire wait staff knew more than they should about us, from how we met right up to our present situation. I would be kicking him under the table to tell him to be quiet to no avail.  I would be ignored.  I would then have to become the interpreter, rephrasing or correcting or echoing my Bert’s pronouncements and also becoming a listener.

Oh, how we talked together.   My Bert had such stories to tell!  We are both curious about our world, our country, people, places and things.   My Bert devoured news and current affairs.  I read and we talked about everything.   Our conversations encompassed silly things, weighty things, family things and couple things.  We agreed, we disagreed and agreed to disagree and we laughed.

Oh, how I miss that talking together.  Now, trying to have a conversation is a Herculean task.  I give up any thought of having a sustained conversation.   In the absence of that verbal communion I have become the chatterbox.  The sentences are made up of the basic noun and verb.  Heck, it could be just one word.  I get back one word in return and sometimes the word returned is completely out of context.  When my Bert attempts to express a thought it ends abruptly halfway and I try to finish it.   Sometimes I succeed but that is becoming more difficult as time passes. It is difficult to enter Alzheimer world when a thought is unfinished.

The inanity is mind numbing.   When does speaking become just noise?  When does it lose its main function of communicating? It tests my patience and it saddens me to see him struggle to find the words.  I think he knows what he would like to say but it takes a valiant effort to get it out.  Sometimes he just gives up.  The frustration is apparent.   He begins to pick at his fingernails and mumbles.

How can I relieve the anxiety?  I say: “Don’t worry.  Tell me tomorrow.”   Then I will rub noses or give a hug.   These now are the best communication tools.  There is no need for words then.

The Meander:    Should anyone be looking for ‘tomorrow’, ‘soon’, ‘later’ please check with a caregiver for a loved one with dementia.  We have usurped them.  We are wearing them out completely.  “When do we go to Breda?”   That is Bert’s birth city in The Netherlands.  “Tomorrow.”    “When are the kids coming?”  They left maybe ten minutes prior.  “Soon.”  “Are we going to bed now?”  We have just finished lunch.  “Later.”   A loving touch, a smile, a hug and holding hands are enough to relieve his anxiety.   We still ‘talk’.

Alzheimer’s World

The first time I heard the phrase Alzheimer’s World I was sitting around a large table at the Alzheimer’s Society office.   It was a mixed group of  persons with Alzheimer’s disease and other dementia and their caregivers.  We were learning about the disease, its progression and available resources.  What they could not teach us was how to live in that alternate world.

Caregivers have no choice. They do live in two worlds, the everyday one we know as the real world and the one that is Alzheimer’s world that our loved ones live in. If we are to be successful caregivers we must learn to also live in that other world.

It is difficult.  Alzheimer’s world is a backwards world because your loved one is on a backwards journey.  Right now my Bert is 85 going on four.  A different puzzle is presented each and every day which only you, the care giver, can solve.  Today he puts on his shoes one brown, one black.  There is an easy solution to that.  You make a joke, point it out and he changes them.  He picks up a slice of bread and calls it cheese.  No problem, you correct it or you say: “that is strange looking cheese.”  That brings on a laugh and: “Did I call it cheese?”

Alzheimer’s world is one of anxiety.  You can empathize.  What if you wake up one morning look at your toothbrush and had no clue what it is, what it does but know you use this thing every morning?  Today you look at a banana and call it steak, even though somehow you know that is the wrong word?  How about getting up to go to the bathroom and being lost in a condo? Would you like to look at a washcloth, while sitting in the bathtub yet completely at a loss of what to do with it?

It gets a little more complicated, of course.  These little slips are unimportant in themselves when they happen once but when they become habit it is a signal that the disease has gained a tiny bit more ground.  Then the caregiver steps in. You take the washcloth and prepare it and explain or show by gestures how it is to be used. Every day I say to my Bert: “Here, start at your face and work your way down.” He gets to work. He now knows what to do and knows why he had that piece of cloth in his hands. More important he is doing it himself.  Dignity is maintained.

Alzheimer’s world is suspicion, anger, feeling lost as well as a loss of control. It is confusion, dependency, a vast expanse of bewilderment. It is a loss of time, place, space, skills.  It is disorienting as your entire world becomes narrower and your trust is placed in that one who is always there that you ‘shadow’, that you trust.

The caregiver cannot stand outside in the real world and look in awe or dismay at Alzheimer’s world.  You must enter it, you must live in it.  Empathy is your power, patience is your tool. The brain is still a mystery. We know in part only. As a caregiver no matter how bizarre that alternate world seems you must suspend your disbelief and go with your loved one into that world.  You ask yourself: “What is it like to be so confused you have to give up your autonomy to someone else?” Then and only then can you serve with understanding and love.

I look at my Bert and when he cannot find the words or gets lost between the kitchen and the laundry I wonder what is happening in his brain.  Does he feel as if he is trying to swim in tar? Does he feel he is in a vacuum?  No wonder dementia patients get angry and lash out at the ones nearest and dearest, the ones they trust implicitly.  We are there, easy targets and maybe this is the way they have a bit of control.  They are engaged in a battle of heroic proportions to stay ahead of an incomprehensible  disease. They wage a daily battle just to BE.

The Meander:  No one can have a desire to live completely in Alzheimer’s world.  It is too awful to contemplate. Yet, as bizarre as this sounds, there are times when you look at what is happening in the ‘real’ world and it is a relief to step into Alzheimer’s world and just focus on your loved one.