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’.

Shoehorns

My Bert puts on his shoes using a shoehorn.  It has always been thus. 

The only time a shoehorn gets near my feet is when I am being fitted by a sales assistant.   My thumbs work for me. Always have.

My Bert is so dependent on a shoehorn that if there is none around he will fashion one from a magazine, folded paper, the handle of a spoon, a credit card, or my thumbs.  He is inventive and adept whether sitting or standing.

Shoehorns now for me have become analogous with my Bert’s aging and Alzheimer disease.  When his knee became arthritic he had to abandon the short stubby shoehorn and get one longer.  After his knee replacement the shoehorn became even longer so he could put on his shoes from a standing position. 

Among the travel essentials was the shoehorn.  We have forgotten them in places like the River Jordan and the Dead Sea and other places where we had to take off our shoes on our sightseeing explorations.     I still remember scouring a market in The Gambia looking for a shoehorn!

I have helped my Bert with his shoes and in disgust have discarded the shoehorn and resorted to my thumbs.  They work.

We are in the shoe store.  I have three pairs for my Bert to fit.  Every shoehorn is long.  My Bert is sitting on a padded bench and trying to get a shoe on.  The shoehorn only gets in the way.  An assistant comes by and suggests he stands up to use it.  I become the supporting post.  This is not working.  The assistant tries to help.  Bert hangs on to me and he thinks we are dancing.  He has completely forgotten the reason for us being upright.  He giggles and tells me there is a woman fiddling with his foot.

The bad shoulder begins to hurt.   My Bert wants to dance.  The assistant is sweating and I am sure the mumble I hear is not fit to print.   It is a Herculean task but finally one foot is in.  It is declared to be ‘good’.   I choose the opposite foot from another box and with equal effort gets it on.  My Bert walks around a few times and declares that they both fit and are ‘good’.

I buy both pairs.  I am never doing this again.  It is hazardous to my health!

“Paula, do you have a short shoehorn?  This one is too long to use to help Bert with his shoes.”  The question comes from our wonderful helper who was on her knees, valiantly struggling to use the shoehorn.  The shaft came up to my Bert’s knee and she was working awkwardly with the curved portion at his heel.

Laughter burst out of me as I thought my Bert is like the shoehorns.   I decide I better give an explanation for the mirth before she decides to call in to her office to say she has two clients on her hands and to please send in the emergency squad.

“Your question has reminded me of that old phrase ‘Once a man, twice a child.’   I am thinking how Bert is living his second childhood in conjunction with his shoehorns.   First it was the tiny shoehorn which with age gradually grew longer and longer.   Alzheimer disease has set him back to the tiny shoehorn which he can no longer use by himself.”

The laugh was bittersweet. 

Helping my Bert with his shoes is agonizingly slow.   He has to be in a standing position. I direct him on each step of the process while he holds on to the wall.  Sure, I could still use my thumbs.  It is the getting down to the floor which has become the problem.   Actually, I could get down but how would I get back up?  Calling 9-1-1 is not an option.   I smile to myself again.   I am thinking about having a crane on call.  Nah!

I can’t help but wonder how we will cope when he can no longer stand by himself.

The Meander:  My Bert and a shoehorn.   It is not such an odd juxtaposition.    He has been known to put on his slippers with a shoehorn. Then again, I am the one who sees the sublime in the ridiculous.  Only problem is that in this case what is sublime?  What is ridiculous?  I can only laugh.  Laugh with me so I do not cry.

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. 

Sweat and Small Stuff

Caregivers are the experts at not sweating the small stuff.  We have no choice.  Start sweating and you would morph into a walking swimming pool.  As we continue the journey I am often surprised at what gets thrown into the small stuff bin.  Most people would be sweating buckets at what we cavalierly designate as small stuff.

A diagnosis of dementia brings instant despair.   Thoughts are of death and the horrors of caring for a loved one you can only envision in the final throes of the terrible disease.    Contemplate possibly living for eight to twenty plus years with the spectre of death hanging over you and nothing, absolutely nothing is small stuff.

Having been handed life sentences for two, we gird our loins to tackle the issues as they come.

Among the first was the constant repetition of questions that drove me nuts.   Same question, over and over.   I would vary the answer just to keep my sanity.  Now: “What time is it?”  “It’s eight o’clock.”  One, two: “What time is it?” “It’s eight o’clock.”  If it continues long enough I may get to:”It’s nine o’clock.”   No problem: small stuff.

The hearing aids somehow get stored in the freezer.  Hah!  The bread knife is in the washing machine:   small stuff.  If my Bert ‘helps’ by washing the dishes and I have to go on a treasure hunt to find where he has put them away?  So what?   I give him a big smile and loud thank you.  He is happy, while I hope I am able  to find everything before bedtime.

A ray of sunshine comes through the window and I see a film of dust on the coffee table.  I choose to see the sunshine.  I will get to the dust later.   I have to cancel my hairdresser’s appointment because my Bert’s appointment is taking longer than anticipated, no problem, I will wear a hat.   My Bert exhibits an inappropriate sense of humour or lack of rectitude in announcing loudly in church or a restaurant: “I have to go pee.”  I used to be embarrassed.  No longer: small stuff.

The little irritants that used to be stressful are just that, little.  So he puts on his t-shirt backwards, shaves off his eyebrows, wears two different coloured shoes (I did not catch it in time) to his ‘club’:  Small stuff.

In great anxiety I consult our counsellor.  I am distressed as my Bert now has Obsessive Compulsive Disorder (OCD)!  Want to be bored out of your gourd?  Watch my Bert make his breakfast open-faced Gouda cheese sandwich.   For the rest of the world, and formerly for my Bert, bread, cheese, put one on top the other and voila – open faced cheese sandwich.  Now my Bert has to cover the entire surface of the bread, just so.  I have watched as he carefully rearranges the cheese pieces until the bread is completely invisible.  The cheese must not be too uneven which will result in complete dismantling  and new reconfiguration of the same piece of bread and  cheese pieces.  I have seen him look at the composition and not being satisfied take another slice of cheese to even out the masterpiece.  The construction must then be divided into four equal parts.  The precision with which that is done is awe inspiring.  The greatest architect would be tested to get it any more precise.   The yogurt, juice, banana, tea, are another post!  I reported all this and tearfully asked:

“What can I do about this OCD?” 

“Nothing.  This may be just his way to have some control in his ever increasingly uncontrollable world”  was the answer.   So, I did nothing.  Now I will even point out a small space without cheese which my Bert will immediately fix.  Hah!  Small stuff.

I asked one of my Lifeliners what constituted small stuff to her and she answered: “Everything.”   We all laughed but related well.  We wished everything was small stuff.  Of course, it is not.  We have learnt to de-clutter our caregiver lives by paying attention only to the essentials.   I determine the very important issues by asking:  Is this a case of emergency?  If the answer is no then it is just small stuff.   It’s self care or rather, self-preservation.  

The Meander:  As the journey continues you do recognize what is important and gain confidence in identifying those issues, new behaviours and changes that need immediate attention, help and/or professional intervention.   My greatest accomplishment each day is to see my Bert happy, teasing, being himself, inadvertently cracking a joke and ‘helping’ me.  All the rest is just small stuff.

Something New or There’s a Name for That!

Something new or There’s a Name for That

“Hey, why are you crying?”

“I love you so much.  You do not know how much I love you.”

“That’s no reason to cry.  I love you too.  I am happy because I know you love me, and I love you.”   My Bert is still crying, so I give him a hug and say: “I love you more than you love me.” Then the game begins.

The game is a couple tradition begun when we met and fell in love.  We would try to outdo each other in professing our love.  It was my Bert who first started to use distance measurements in the game.  It was: “I love you to the moon and back.”  Then I would top that.  We would signal the end of the game when my Bert said: “I love you to eternity” and I would counter with: “I love you to infinity”.  We would then segue into a debate as to which was the greater, eternity or infinity. That is yet to be decided.

Lately, both ‘eternity’ and ‘infinity’ have lost their meaning to my Bert but he still hangs on to distances.  It is not unusual to hear in the middle of having breakfast: “I love you fifteen million times around the world.”  Since mornings are busy and I have no desire to go around the mulberry bush a few hundred times I do not respond with distance but with a smile and say: “I love you too, double that.”    That is enough to elicit a laugh and immediate satisfaction.  This crying was an addition I did not like.

A few days later I go to get my Bert from his ‘club’.  I am met by staff who report that he has been crying for maybe an hour or more.  It seemed they were having a music programme and somehow a song reminded my Bert of World War II.  He became very emotional and started talking about his experiences as a child during the war.  He had spoken quite eloquently and very often about this but it was not accompanied by this type of crying.

I was asked to wait a few minutes while they continued to calm him as he had told them: “I do not want my Paula to see me like this.”  I waited.  The door opened.  I smiled at my Bert and he burst into tears.

I was flummoxed.  Not only was he getting emotional frequently, he was expressing an emotion that was beyond the dictates of the situation.  A happy baby on television could start a crying episode.

Then came enlightenment.  It was a scheduled home visit from our Geriatric Mental Health Counsellor.  She is wonderful, warm, caring and most of all very knowledgeable.  When she asked me if there were any new behaviours to report, I told her about the crying.  She immediately said: “Oh that is called emotional lability and is a condition that people with dementia experience.

“Emotional liability?” I exclaimed.   You may recall that I am that individual with a syndrome not yet named as evidenced when my doctor first diagnosed a Baker’s cyst and I in confusion asked: “Baker’s Yeast?”  Obviously my syndrome is intact as she smiled and said: “Not liability, lability.  Let me write it down for you.”  Smart woman, I thought.

As soon as the visit was concluded and advice given as to how to deal with the condition I went to the internet and found this:

“Emotional lability refers to rapid, often exaggerated changes in mood, where strong emotions or feelings (uncontrollable laughing or crying, or heightened irritability or temper) occur. These very strong emotions are sometimes expressed in a way that is greater .than the person’s emotions”

“Labile Affect, also known as Pseudobulbar affect (PBA) or Emotional Incontinence, is a disorder where the patient has excessive displays of emotion, or expresses emotions that are not congruent with the situation.”

It is exactly as my Bert demonstrates.

The Meander:  Daily, it seems I am made more aware of the incredible organ called the brain.  It is simply amazing.  Will we be able ever to unravel its intricacies?   I wonder if Artificial Intelligence, or those fantastic robots that can do anything and everything and which will replace or conquer us in the end, can experience emotional lability?  I dare to think that the operative word is ‘artificial’ and it will ever be thus.

Honest Mistakes

Oh, the stigma of having a mental illness!  Once we got the diagnosis of dementia – Alzheimer Disease my heart sank and I thought: “How do I cope with a mental illness?”  It was an honest mistake.  Dementia of which Alzheimer Disease is the most prevalent form is NOT a mental illness. Yet, I too immediately classified this brain disease as  mental illness.  It was easy for me to grasp the outcome of a stroke, or brain aneurysm, but deterioration of the brain without such a direct cause was suspect and to be shunned.  Yes, we have come a long way in recognizing what mental illness is but there is still a stigma about it and since dementia concerns the workings of the brain it all gets lumped into that basket of things not understood.   It comes down to being ignorant, not knowing, a state we dislike, so we stigmatize.

Persons with a mental illness are no longer shut away in an asylum, or ‘madhouse’.  Both understanding and treatment have advanced where we now recognize mental illness as just that, a mental illness.   On the other hand dementia is a physical illness.   Although this disease is being studied and research abounds there is still not a definitive cause for the more than 120 types of dementia that have been identified so far.  Technical and medical terms like beta-amyloid protein fragments usually referred to as plaques and tau or tangles are batted around.   I now can bat around such terms with understanding but they are the mechanics of a disease that attacks the brain and leads to death.  You can begin to understand the complexity of the disease when examples include Lewy Body, vascular, frontotemporal, Parkinson’s disease and even Cruzeveldt-Jacobs Disease which is the human form of what is commonly called Mad Cow disease.  Naturally the latter is an example not trotted out too often as the word ‘mad’ is a red flag to any raging bull or misunderstood brain disease which can lead to even more stigmatization.

Another honest mistake is to think that all these numerous forms are just a different kind of Alzheimer Disease.  Like Alzheimer Disease these are types of dementia.  In fact Lewy Body has its own abnormal protein called alpha-synuclein buggering up the works in the brain.  Each one identified has its own pathology and just to make life more difficult there is also mixed dementia which is now recognized as being more prevalent than previously thought.  That is usually a diagnosis which is a combination of vascular dementia and Alzheimer Disease.   It signifies too that the two main engines of our body, the heart and the brain are both compromised.   I think since research is ongoing we could wake up one day and hear that ‘mixed’ is not only two, but three or four or more ganging up on one brain.

My Bert is a classic case of Alzheimer Disease.  The last doctor told him his blood pressure was better than many younger people, to which Bert replied:  “I am only 19.”  I was not going to correct him to say he was a toddler in the brain department!   Yet, it is true that my Bert is healthy.   He eats well, has not put on or lost weight.  Whatever negative symptoms he exhibits, and there are many, all stem from those darn plaques and tangles that are filling up his brain, interfering with the memory and communication processes.  Messages are confused, delayed, misunderstood or not understood at all.  We are both frustrated.

It is uncharitable to stigmatize anyone for any reason.   We have had the honour to meet and become friends with a most accomplished, outstanding citizen, and the epitome of a gentleman who had actually been institutionalized in a mental health facility twice.  He was completely cured and felt enormous gratitude for the professional help he received.  He acknowledged the fact of having a mental illness.  He knows the difference between that and dementia.  Many of us do not.  However we can learn.

The Meander:  A doctor making rounds in a Mental Health facility sees a patient writing furiously.   “What are you writing?”  He asks.

“A letter.”

“Oh, who are you writing to?”

“Myself.”

“What does it say?”

“How the heck would I Know?  The postman hasn’t come as yet!”

A doctor making the rounds in a Memory Care facility sees a patient painstakingly forming letters on paper.

“You seem to be writing a letter.” He says.

“Yes.”

“Are you writing to a friend?”

“Yes.”

“What does the letter say?”

“What letter?”

Employment Opportunity

The Company:  Dementia and Partners

Job Title:             Caregiver to a loved one with dementia

Duties:                 Advocacy or dealing with agencies, organizations and bureaucracy

Nurse and Social worker

Mother, Father, teacher, daughter, son, husband, wife, friend, protector, security blanket, lover, dance partner, punching bag (literally and figuratively), pacifier

Drug Dealer doling out correct medications at right times and right amounts

Administrative Assistant

Primary Personal Care aide

Archivist or keeper of memories

Mood assessor, Ego booster

Entertainment Manager and Cultural attaché

Detective and finder of lost articles

Domestic cleaner

Fashion advisor and dresser – no clown outfits or black left shoe with brown right shoe allowed.  “You need a coat and scarf.  It is cold outside.”

Language expert, Translator, Interpreter

Dietitian – Chief Cook and bottle washer

Information Research Scientist to wade through the massive amount of information.  It is continuous learning.

Child care worker, Psychologist

Financial manager and banker

Transportation service provider and personal taxi service

Ghost buster when as example you are told: “There is a man outside the bedroom with his wife and children.  Are they sleeping with us tonight?”

Playmate

Logistics clerk – you will be making appointments with many professionals you never knew existed.

Record keeper-Careful notes result in better care.   You work with your care providers and medical professionals so there is no guess work.

And other duties as they arise

Special Skills needed:  Flexibility, Quick learner, Decision Maker, Comedian, Political skills aka therapeutic lying/ deflection/distraction/redirection.

Patience, patience and more patience

A thick hide is a real bonus

Emergency services coordination in knowing when and whom to call on a list you have created that is easily accessible when needed

Wages:                 $0.

Benefits:             The complete and total trust of your loved one

Recognizing the awesome responsibility of having complete control over another human being, your loved one

Unconditional love, which is sometimes hidden but is always there

Acquiring enumerable new skills, whether you want to or not

No experience necessary.  You will be given full, free tuition and fast track your career through Dementia and Alzheimer Disease University.

We guarantee a full and rewarding life though we cannot guarantee your sanity

Date of Hire:      Immediately

Hours of WorkThe 36 hour day – This book is a good resource as well as your daily work hours

Contract duration:  6 to 20 years or more.  Think “Until death us do part.”

This is an equal opportunity employer – age, status, wealth, race, colour, creed, education, health status, relationship, sex, ethnicity, the good, the bad, the ugly, the beautiful or other does not matter. This company will take on anyone.

The Meander:  So often this phrase is uttered “I did not sign up for this”.    We do not choose this job.  It is thrust upon us.  On my dark days I console myself with this: “Love guides me; Empathy empowers me; Patience is my best tool.”   It is my mantra.   My Bert, love, empathy and patience keep me going.

Note – As I was about to publish this post a call came in from a friend.  I mentioned the content of this post and her immediate response was: “You left out one very important duty- Search and Rescue.”  True.  Not wanting to change the original post I decided to add this note.  I also invite all who read it to comment and add any other duties I may have missed.   It may be that no one person can cover all the changes and activities that will come out of a brain with dementia.   Individuals exhibit different behaviours  even though they all have dementia.  Writing the ones we each encounter may help many of us already on this journey and others who may find themselves walking it in the future.  Forewarned is forearmed.

 

 

If I can Help…

“Hi.  Love reading your blog.  Thank you for all the great tips. You are sharing your experiences as a caregiver and in doing so you are helping us too.  So much of what you write is just what I am going through.   I learn a lot from you and it makes me realize I am not alone at this very difficult time.”

“Thank you.   Yes, the road is long and difficult.  It can be hard to find anything that brings joy especially on those trying days when nothing seems to go as you would wish.”

A group of caregivers were sharing experiences and tips about what worked for them in a variety of situations as they cared for a loved one.   I was eager to hear of the solutions which were very creative.  Topics ranged from encouraging your loved one to bathe with everyone wondering why most dementia patients seemed to be afraid of water, to that often discussed ‘shadowing’.  We also discussed the missteps that tripped us up every now and then.

My story was in regard to my Bert talking to the photograph of his mother every night.  One night he came from the room and said: “I love you, Mama.”  I laughed and said: “I am not your Mama.  I am your wife.”  It took me an hour or more to calm him and to convince him that I was not rejecting him.  My Bert looked at me with tears and said: “I know you are my wife, but you are my Mama too.  You look after me.”

Apparently, that confusion in relationships was not specific to me.   There were fathers who were jealous of sons who hugged their mothers; A father who decided his daughter was his sister and/ or wife; A husband who thought his wife was his personal support helper and the helper his wife.  Come to think of it that is not too far off the mark.  They were both caring for him.

One spoke about the mistake she made when she decided to have her mother go to the Adult Day Programme for a second day in the week.   Oh, that got a very animated response.  We all had had experiences of introducing a programme to our loved one.  Nothing was wrong with the programme just that you are not there.  Her mistake was to prepare her mother for the new routine by telling her she would be going to her special club now for two days not one.  That she would have an extra day to be with friends, do some fun stuff and have a great time with the other club members.

Sounds good, except her mother only caught on to ‘extra day’.  Mother was livid.  Why was she being ‘sent away’ for an extra day?  Did her daughter not want her around?   Was she such a bother?  The group got a most graphic recounting of the battle which was made worse when on arriving at the programme, mother asked her if this was the ‘extra day’ and was told that it was.

I interrupted the narrative to ask: “Why did you tell her it was an extra day in the first place?”  She laughed and answered: “I had not yet read your ‘Therapeutic Lying’ post nor become adept at it.  It was early in the game for me.”

I understood, totally.   I too, knew nothing about Alzheimer’s disease but I learned with experience.   It took me a while but I found out that sometimes the best way to protect and care for my Bert was by the sin of omission.  When I added a second ‘club’ day, I said nothing about it.  We just went on our usual day and two days later we went to his ‘club’ again.   It helped that Bert was at the stage where days, dates, time were inconsequential.   I did need to reassure him that I would be there to pick him up and we would go home together.  After nearly two years in a Day Programme, I must promise him that I will come for him at 4 p.m. and then we seal that bargain with four little kisses.  When I pick him up his smile could light a small town.

If my experience can help any other caregiver in some small way, I will consider that a special reward.

The Meander:  Our loved ones trust us implicitly. We are their everything, literally.  We agonize and experience stress when we know our behaviour is not quite what it should be.  That is the real world.  The answer for the caregiver is to remember that we have to live for two, act for two, do what is best for two.  All our loved ones want is to feel safe, protected, and loved.