To Wander

When I think of wandering it is Wordsworth’s “I wandered lonely as a cloud…A host of golden daffodils”.

There is a happy aimlessness, a feeling of discovering something new, exciting and surprising.  I think pleasant thoughts when I think of wandering.   I think of freedom, to just be.

As a caregiver ‘to wander’ takes on a whole different meaning.   To the wanderer, your loved one with dementia it is a different kettle of fish.   To your care team wandering is a huge red flag that signals a myriad of issues.

All the nuances of the meaning were brought home to me recently.  I must confess that my definition did not undergo a sea change; rather it just expanded in meaning to incorporate the alternate reality in which I now live.

So what happened?

My Bert asked me to look at his belt.  He thought it was twisted.  It was not.   “Good,” he said then told me he would go and sit in his chair for a while.  That usually means he is going to take a nap.

I went to the computer, replied to three messages and began to read a news editorial.  I was perhaps one third of the way through when I heard a slight commotion at the front door and my Bert saying ‘”Thank you.”

Nothing to worry about I thought as I know my Bert loves to answer the door and my wonderful neighbours do come with offerings of goodies on a regular basis.  I got up in no particular hurry intending to see which one had brought an offering and to add my thanks.

Surprise!   It was a neighbour, but instead of cookies or muffins, she was bringing my Bert back from the end of the hallway while telling him: “See, you are home.  Here is Paula.”

My Bert was ecstatic.  He kept saying thanks and how it was a good thing she knew where he lived.  He hugged me, kissed me and blurted: “I was lost.  She brought me back.” Then he got teary eyed.

My brain went into overdrive.  Wandering has begun so I need to secure our home.  I need something on both front and balcony doors to deter or prevent easy exit.

The sucker punch of my Bert not recognizing me was nowhere to be seen or felt.  It was pure analytical thinking with a heavy dose of organizational skill that was foremost.   Problem solving mode kicked in.

Whenever there is major change or activity developing in your loved one you must report it to your professional team.  There are four people to whom I report.  Each one expressed a deep concern at this new behaviour.  The seriousness of it was unmistakeable in voice, concern expressed, mannerisms and instructions meted out.  All remarked on how ‘dangerous’ this behaviour is.  I was a little amused.

Sure, wandering is very serious.  There are a number of pamphlets about it.  It is a major concern.  I know that, but coming after my Bert not recognizing me deflated its significance.  Also, I could do something concrete about this.  I had some control and a plan going forward.  This was relatively speaking a piece of cake.  

My perspective and that of the professionals were quite different even though we all started from the same place:  When a person with dementia begins to wander it is perhaps the most sombre indication of major decline in our loved one.

What is the difference?   My professional care team is wonderful, caring, and observant and works with me to give my Bert the best quality of life possible.   I am grateful for their help, advice and guidance.  I know I can depend on them.  However, they are not deeply, emotionally, intrinsically involved with my Bert.   They do not share hearts with my Bert.  They deserve high praise for the great job they do.  I know they are in our corner.   That is more than enough.

I have proof that emotional stress is far worse than physical stress.  I am physically bone weary, but I can hope for relief.  I have proof that the deeper the love, the deeper the hurt.  There is no relief for that. Love’s open door is not for escape but to draw in and enfold.   I do not need any lock or alarm on love’s door.  That remains always open and endures the kicks, the punches, the heartaches.  It is the physical door that needs to be secured.

The Meander:  Our home is now secure.   It is such a simple gadget a toddler can open it.   I am the one deficient in know-how.   The first time we are leaving I was about to swear in frustration (no!) when the door would not budge.   Then the penny dropped.  I had not slid the tiny lever on the gadget as I should have done.  No, really, believe me, a three year old would have no trouble!

Floundering

 “Good morning, love.”  I move around the bed to help my Bert out even though he can manage by himself.

“Who are you?”

“Same old me,” I say with a smile.

“Do I know you?” He is teasing me.  He is a master at that.  I laugh and look up.  He must want a hug.

My Bert looks back at me.  The vacancy in his eyes seems more evident today.  More apparent that he sees without seeing.  Perhaps the macular degeneration has progressed, I surmise.  I reject that thought.  His last check-up was better than the previous one. 

I hug him.  “OK now, chop chop, it is club day and Tee will soon be here to get you ready for the day.”

There is no response, no return hug, and no acknowledgement except for a querulous, questioning anxious look.  

Reality is a sucker punch.  I do not want to believe what is slowly dawning. 

My brain is lethargic, refusing to process.  No.  This cannot be.  It is too soon.  My Bert’s brain is being ravished by Alzheimer disease but he is still here.  He still makes me laugh.  He is steadfast, true and reminds me so often that he will love me forever.   Is there love without memory? Forever is not, cannot be today.  Please, not today.

I am a fish, a flounder, perhaps.  There is no graceful sinuous, gliding, smooth movement in my usual element.  There is no buoyancy, rather, I am beached.  Floundering.

I am an open wound.   I am hurting, mentally, physically, emotionally.

My learned mantra which up to now has helped me navigate the Sturm und Drang of caring for a loved one with dementia is a platitude.  That formerly helpful phrase: “It’s the disease; it’s not your loved one,” has become a cliché that has lost all its weight and substance to console.

This is my Bert.   How can my Bert not know me?   In rapid rewind motion I see our entire life together.  The highs and the lows, the ordinary and the extraordinary experiences of lives lived well.  So rich a life; such an interesting journey; I must hold on to that or lose my very self.

My brain tells me this is the natural progression of the disease.  My heart refuses to understand.  My hearts does not have room for this new phenomenon.  I am floundering.  A spectre hovers.  It walks with me and whispers: “Yes, this is your new reality.”  I am walking covered in a veil of sadness which seems firmly attached.   There is no escape.  I fear this will be my constant companion.  It is called grieving.

Another cloak has descended on my shoulders.  I must know me for my Bert to know me.  Even as I note the convolution I realize that as I have been living for two now I must also love for two and be a mirror of myself for my Bert.  It will be a show and tell of our love, our life, our togetherness.

My ship has listed, my world tilted.  The shadow grows.  The light is dimmed.

The Meander: Today my Bert is my Bert.  I am exactly who I am and should be.   All is well. Tomorrow?  Well ‘tomorrow is another day.’  I may be me or who knows?  I may be someone else or no one, whatever the disease chooses.   I know in my Bert’s heart I am forever his Paula. That certainty is my ballast.

Remember: “It’s the disease, not your loved one.”  “It’s the disease, not my Bert.”  Repeat.

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’.

A Darker Day

Alzheimer disease has been called The Long Goodbye.    It is also The Long Grieving.  Over the last few weeks I have watched my Bert lose some more brain cells.  Now I am more instantly aware that it is happening.  That was not always so.  Prior to this it would take some prolonged period of imperceptible change for the loss to be noticed.

One morning he had his yogurt after his sandwich as usual.  The next morning he does not eat it and I ask: “Don’t you want your yogurt today?”

My Bert looks at his plate, his cup, and his knife then picks up the banana peel and says:” Oh, yes, I do.  I want my yogurt.”   He begins to put the peel in his mouth.  I stop him and give him the yogurt.  I do not wait for this to recur.   I know yogurt is now another item that befuddles his mind.  His brain no longer recognizes that so familiar item which has been a part of his breakfast for as long as I can remember.

My Bert now tells me goodnight and says he is going upstairs to bed.  There is no upstairs in our home.  In fact we live in a condo and have always lived in bungalows.  He needs to be reassured that yes, this is our bedroom, yes, this is our bed, yes, I will be sleeping in that same bed, yes we will be sleeping together and yes, Jan, Gerard, Ossie, Wendy, Marg, Meintje and a few more people, all who are already dead will be sleeping with us too.    I offer no correction nor explanation.   If my Bert is less anxious having them with us, well, come on in.

Each day my Bert tells me repeatedly how much he loves me.  I wonder if he is saying it to reassure himself.  Maybe it is just that familiar phrase he has been saying for so long and so often.  Maybe he likes the smile it brings and the:”I love you too.” I know it has not lost its meaning for him nor for me.

I sometimes catch a vacant look, accompanied by an unintelligible mumble.  I wonder what is going on in his brain.  Do the amyloid plaques cause any sensation as they fill up and kill off another cell?   What about the tau tangles? Do they emit any sound as the deterioration accelerates?  There is no indication of pain but I wonder if there is anything, any sensation that tells my Bert something is amiss.  I will never know.

My Bert is entering the late stages of dementia.  I am in the beginning stages of grieving.   

To see the Light you must live in the now, yet I cannot forget what was.   I remember the good times, the fun we had, the amazing life we lived but I am remembering in the past tense as if my Bert is the past.  I censor myself.  My Bert is still here.  There are still moments of absolute clarity and I can see what used to be in the here and now. 

Now I understand the ambiguity of memory.  It can be soothing and at the same time cruel.  Memory is the handmaiden of grief.  The mind of its own volition brings up memories and by definition that means the past.   I am remembering the then, the before and it is making the now unbearable.  The mind and my memories are not static or finite.  Therefore, neither is the grief.  I am grieving the loss of yesterday, last year, our beginning and yesterday.   My memory meanders with the mind’s stream of consciousness, skittering hither, thither and yon and grief is its partner.

My Bert is slowly leaving me.

The Light dims as I contemplate the inevitable.

Imagining the after is unendurable.

There is still some light.  The loss is not complete.  I grieve but do not yet mourn.

Not yet.

The Meander:  My respect and admiration for caregivers is immeasurable.   No matter how special this particular challenge is, the journey is heart breaking.  It tests the will.   It is an obligation made bearable by love.   You have no choice.     I know.  I love.  I hurt.  I am a caregiver too. 

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.