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?”

Short Shorts

My Bert calls me Mama.

“I am not your mother. I am your wife”

“I know.” he says.

“So, why do you call me Mama?”

“You are my Mama because you take care of me.”   This is no longer a momentary lapse; it is a delusion.   My name alternates between ‘my Paula, my wife and Mama.’   I presume that since I go from Alzheimer’s world to the real world perhaps my Bert goes from reality to delusion and back again in much the same way.  I do not know.  I doubt the transition from Mama to wife means anything to my Bert.  I do know that to him I am Mama in that juncture of time.  When he calls me my wife or my Paula it is the truth, the reality of that moment.

The only significance in those moments is that whatever he calls me he knows who I am.  He has not forgotten me and in fact has more cognition, where our relationship is concerned, in his world in that I am not one or the other but a composite of the roles I fulfill.  He does recognize that I am wife and mother and also just Paula.   What do I do?    Nothing.

***

We are on our way home.   My Bert has spent the day at his ‘club’.  He was happy, telling me that ‘They all like me and they tease me’.  Teasing will always get a positive response from Bert as he has a PhD in teasing.   A soft white splatter, then some more hit the windshield.  Omigosh.  I am not ready for winter.

“Look, it is snowing.  It is too early for snow.”  I sigh.

My Bert leans forward and says: “Don’t worry, it’s only hard water.”   His perspicacity generates a chuckle.   I wonder if I should pass on this definition to a meteorological agency as another descriptive word for snow.   It does sound logical doesn’t it?   Think of ice.  That is definitely hard water.

* * *

My Bert lost his hearing aids.  If I have told him once I have told him a hundred times to leave his hearing aids in until I remove them.  Well, that goes in one ear and out the other, hearing aids in place or not.  I look in all the locations that would seem logical for him to put them.  Then I look in some unusual places.  I enter Alzheimer’s World and begin to look in the most implausible places imaginable.  No hearing aid.  I remember the bread knife in the washing machine and begin the search again.

Although I know the hearing aids had to be somewhere in the home I cannot find them.  I give up, realizing Alzheimer’s world has defeated me.  I call, order a new set and make the appointment to have them fitted in three weeks.

The loss of the hearing aids becomes a subject of conversation.  This happens more frequently than you may think.  I heard of them being in shoes, in a flower pot and other such interesting but bizarre places.   It makes for a good laugh but I am thinking of the replacement cost and wondering how to ensure I do not have to do a repeat.  Three days before the appointment I open the freezer, root around to find what I need and right in the corner there is a pair of twisted together, flesh-coloured objects  winking at me.  You guessed it.  The hearing aids.   Of course they are no good anymore.  My Bert has frozen his ears off…well the hearing aids.

* * *

A new Personal Support Worker (PSW) is coming to get my Bert ready for the day.  It is not the usual male aide but a woman.  I am unsure how my Bert will respond to this.  She arrives.  We all go to the bathroom.  I will hang around just in case.  I call out cheerfully:

“OK, Love, time for your bath.”  My Bert looks at me balefully and I am mentally preparing what to say if he balks.  He harrumphs as only he can, begins to undress and says: ” Why do I need two people to give me a bath?”  The PSW is marvellous she laughs and says:

“You are so lucky; you have two beautiful women to help you.”   Without batting an eye and with a devilish grin my Bert turns around and says: “Want to change places?”

We all burst into laughter.  I leave them to it.

The Meander:  As long as I can laugh with my Bert at the vagaries of this dreadful disease, we remain its masters.  I had no idea that Alzheimer disease could provide so many instances of comic relief.   I hope we have many more moments of merriment at its expense.

Conversations

Consider these conversations.   We are driving home from a double day date  with Lifeliner Jackie and her Bob when my Bert says: “Are we going to Canada”?  No use trying to explain, just enter his world and answer: “Yes, we are.”  I have not finished saying those three words when Jackie’s Bob pipes up with: “No, we are not going to Canada we are going across the bridge to Winnipeg.”  His wife and I share shrugs and looks as I distract with: “Lunch was very good today.”  The conversation turns to lunch.  Good.

“Bert, come and watch this.  Our Dutch son has sent us a video.  It is funny.”  We watch together and laugh.

“Where is he?”  Bert asks.

“He is in Amsterdam, in Holland.”

“No, it’s The Netherlands.”  That’s my Bert. He makes this correction as always.  “Tell him to come for a visit, or maybe we can go to see him tomorrow.”   This is an easy one to deflect as by tomorrow, actually within the next five minutes or less he would have forgotten the whole conversation and video, so I say: “That’s a good idea.  Maybe we can do that.”

“Sweet P, are we going to Europe tomorrow?”  Without thinking I answer: “No.”

“Why not?’

Fast thinking: “Because we have two doctors’ appointments and we cannot travel until we get those done.”  The appointments are real.

“Oh, OK.  We can go to England tomorrow then.”

“Yes, we will do that.”   My Bert smiles.  All is right in his world again. Gosh, you lie so easily, I tell myself.

Yes, caregivers lie.  It is a skill we develop over time and it is a critical one for both your loved one and for you.  You get more adept at doing it but every care giver will tell you it is not an easy one to perfect.

Imagine a child lying to a parent.  The same parent who taught that lying was not to be tolerated.  My Bert and I made a pact that we would not lie to each other.  Now I lie almost every day.   There is still a frisson of guilt each time but the alternative is so much worse.  If I were to begin explaining that going to England tomorrow is not feasible it would only result in frustration and anxiety leading to anger and distress.

Caregivers live in two worlds and become adept in Alzheimer’s communication.   At first it is hit or miss as you are being logical and Alzheimer’s world is illogical.  Why argue?  Why be angry?  It does not matter to your loved one.  You only make yourself frustrated and in a minute or two that anger is festering only in you as your loved one has forgotten all.   I find the ‘tear out your hair’ and ‘banging your head against the wall’ moments are beginning to lessen as I advance in Alzheimer’s University.

Of course those moments will continue to occur.   You are trying to communicate with someone who cannot reason. You can no longer begin a sentence with “remember”.  You cannot say:”I just asked you to” or, “I just told you!”  You can say that till the cows come home, means absolutely nothing.

Preparing dinner is wonderful.  Bert loves to help and seeing I am somewhat lacking in the culinary arts he was the cook for most of our marriage.   Now that my Bert is my toddler his kitchen duties are limited.

“What are you doing?  Can I help?”

“No, darling this will not take long.”

“You never let me help anymore.”

“OK.  You can help.  Please put that in the garbage for me.”  I point to the vegetable peelings.  He does it.

“What are you doing? Can I help?”

This goes on enumerable times as I get him to set the table, one utensil at a time, one knife, fork, spoon glass, and one plate while I get on with any preparation I have to do.  Every time my Bert asks to help, I give him one more item.  It is only the two of us but by the time the garbage is in the bin and the table set, whatever is in the oven is ready.  If I need more time I will tell him to go wash his hands.  If I am lucky he will wander around looking for the bathroom, becomes distracted when he sees his chair and sits because he has forgotten what he was going to do.

Alzheimer’s communication is a lot of distraction, deflection and accommodation.   You develop the skill for therapeutic lying.  Here is what makes it bearable and easier as time goes by.  You lie to protect, to preserve dignity, to console, to reassure, to show respect.   You lie because you care.

The Meander: To my fellow caregivers. We learn to live in two worlds. We learn so many coping skills as we travel this journey.  Learning to lie is just another of those skills.  Always remember we lie because we love.

Aphasia…or?

So lately my Bert has been coming up with the most interesting nomenclature for everyday items.  He looks at the shoe he is putting on and calls it cheese.  Trust a Dutchman to come up with that particular mental contradiction.  Then he looks at his cheese and calls it bacon.  At least they are both foods. He is muttering.  I lean in and hear: “St. Anna Boys” being repeated over and over.  There is a ogical link, sort of.  Bert was a hard playing member of SAB – St. Anna’s Boys Soccer club in his youth.  It is close to bedtime.  Will I be a soccer ball tonight?

He says something to me but I cannot understand.  Not only is it garbled but there is no connection, it seems, to the conversation we were having about needing batteries for his hearing aids.  “I didn’t hear what you said.”  That wonderful humour comes through. He laughs and says: “Want my hearing aid?” I laugh with him but I am wondering if he mumbled to tease or were his communication skills diminishing.

There are a few other signs that indicate, as I call it, a few more brains cells have died.  Bert is speaking less; he has difficulty finding words and so makes up new words that stretch my imagination to the limit to decipher.   He does not write anymore and reading is limited to spelling out words, saying them out loud, but I am not sure that he understands their meanings.   Are these the skills of a four year old, his assessed cognitive age?  I am living out my own Curious Case of Benjamin Button.  I was fascinated by that movie.  Never thought I would find any thing remotely relating to any experience I would encounter in my life.

After consulting my sources and resources both human and virtual I have come to the conclusion that my Bert may be exhibiting the early stages of aphasia, specifically Primary Progressive Aphasia.  Do I sound doubtful?  Of course.  Nothing is cut and dried when it comes to dealing with dementia.

The main causes of aphasia are a stroke, a brain injury or a brain tumour.  It is usually the result of an event that is sudden or an emergency.  If that was all then my Bert does not have aphasia.  Then I read that there are six or so types of aphasia and Primary Progressive Aphasia (PPA) is the rare form that is found in persons with dementia.  PPA is a disorder in which people lose their ability to read, write and understand language over time.  It is the only type that, as its name suggests, is progressive, takes time in its development and have nothing to do with a sudden trauma to the brain.  It is more prevalent in persons who have Alzheimer’s disease and Frontotemporal  dementia.

Here is a twist.  PPA may be rare in people who have it without having any form of dementia. However, if you have dementia is this not a natural deterioration to be expected along with all the rest as the brain breaks down over time?   Also, since Bert has age-related macular degeneration could his diminished abilities to read and write be a direct result of that ailment?   However, how would I account for the confusion and his new found ability to create new words, his search for words, his mumbling and the rest?

So here is a topic to be explored with the various experts we see.    I have no wish to fast forward my Bert’s illness but I do believe that forewarned is forearmed.  If I begin to wrap my head around this PPA thing, I can begin to search for ways to alleviate the problem since my Bert’s problem is also my problem.  I will be working on strategies to aid communication.  The Alzheimer’s Society has resources that I can begin to use right now. There are some excellent blogs, newsletters and articles that will help me find best practices.  Best of all the Lifeliners will put our collective heads together to explore possible solutions and find support.   We are a creative bunch.  I can see us using all kinds of homemade tools, flash cards, art, gestures, music and more to communicate with our loved ones.   We will share what works. That is what we do.  We share to show we care.

 

The Meander:  Unlike a stroke victim, when PPA becomes another bump in the road on the Alzheimer’s journey, there is no cure to anticipate.  A legion of therapists will not be able to reverse the affliction.  My Bert or anyone with Alzheimer’s aphasia will only get worse, not better.  Ay, there’s the rub!

 

Be the Calm in Your Storm

A caregiver must take on all the responsibilities both large and small of daily living.  All the shared tasks are now yours alone.   From financial matters to today’s dinner and everything in between all are now on your shoulders.   In addition there is the need to be always mindful of the special needs of your loved one.   Caring for your loved one is job one.  As example just last week my Bert put the kettle on for what would turn out to be the last time.

Both Bert and I are tea drinkers.  In our couple’s language when one asks:  “Would you like a cup of tea”, it actually means, “I would like a cup of tea.  Are you going to join me?”  The answer is invariably: “Yes.”  Putting the kettle on has been one of the little chores Bert loves to perform.  He feels he is ‘helping’ me. So last week the conversation began as per usual with Bert asking the question.

“Would you like a cup of tea?”

“Yes.”

“OK I will put on the water.”  Two minutes later:

“The water is in the kettle.  It is on the stove.  I do not know which dial to turn on.”

It takes an enormous effort to remain calm as I get up and go to the kitchen with my Bert, trying not to hurry or show my panic.  I look at the stove.  The kettle is sitting on a large unlit burner.  Thank goodness.

“Oh, love.  See.  The kettle goes on here.  It’s already plugged in.   Soon the water will boil.”

In my head the conversation goes like this: “Holy crap. If he had turned on the burner under the electric kettle it would melt it and if I was not here he could have burnt the whole place down.”  I am appalled.  I am shaking inside.  I really need that cup of tea now.

Bert: “Oh. I forgot. That is bad. I am a bad boy.”

I smile.   “Yes. You forgot.  That’s nothing to worry about.  You are not a bad boy. You are my honey, and we are going to have tea.”

“You have to make the tea.”

“Sure, I’ll make the tea.”

Internally I am thinking: “You better believe it.  No more tea making duties for you, my love.”  I sigh.

I reach for the cookie tin, put it on the table and say:  “Here are your favourite cookies. Take out some to go with the tea.”   Ah, I think, he can still ‘help’ me as going forward my Bert can get the cookies while I make the tea.

“OK” he says as he puts cookies on a plate

My heart rate is slowly coming down.  Things are back on track.  My Bert will have his tea and cookies and has already forgotten that he wanted to put the electric kettle on the stove to heat the water. I am already formulating my answer for the next time he asks: “Do you want some tea?”   I will answer yes, as usual but will add:  “I will make it for both of us and you can get the cookies.”

I am happy I remained calm.  I was reassuring not censorious.  It could have been so demeaning, chaotic and upsetting to both of us if I had shouted out something like: “Are you crazy?  That is an electric kettle.  You could’ve burnt down the place….”  I would have had a spouse with dementia having an anxiety attack or worse, and for the rest of the day and maybe longer I would have been berating myself for ‘losing it.’

The Meander:  Being careful to reassure, to be calm, to reduce anxiety over any situation great or small is another talent caregivers learn and develop over time.  It is not easy but by acquiring that skill we help not only our loved ones but ourselves as well.   Sure, the situation could have ended very badly, but it didn’t.  We carers learn to look at the bright side…and there is always a bright side.

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.

The Vow

It is a good morning.  By the time I had finished my shower my Bert had made the bed and was ready and waiting for his bath.  Now breakfast was done and my Bert was sitting, waiting for me to put in his hearing aids.  He looked out the window and said: “It is a beautiful day. The sun is shining. I love this place. It is quiet.”  He smoothed the table cloth and says: “I love this table cover. It is cheerful. This is my favourite shirt. I love my shirt.  You look nice. I love you. You don’t know how much I love you”.  He was smiling. I smiled at the diction of my wonderful toddler/husband and was impelled to write:

The Vow

I will be patient, kind and loving

I will remember “It is the disease”

I will laugh with, talk with, and share with,

I will see an adult who is facing challenges not a recalcitrant child

Even if that‘s the reality.

 

I will not brush off, nor ignore

I will feed and clothe and soothe

I will encourage and praise

I will entertain and join in games

Even when I am tired

 

I will sing a lullaby and blow a kiss

I will mime a story and be silly to jog a memory

I will accept the illogical as the new logic

I will coerce the abnormal to be normal

Even though I reject it

 

I will love and cherish as promised

I will make our home a safe and warm place

I will be wife but accept that I am mother too

I will endure to the end

Of him or me.

 

The Meander:  I see a steady and continuing metamorphosis.  A thief is robbing the faculties.  I note the weakened senses leading to confusion and bewilderment.   I see how much has been diminished, how the familiar terrain is becoming a strange and arid landscape.  I am first row center as this terrible disease plays out its act of destruction.  Yet that appreciation of the simple things and his love epitomizes My Bert.  Yes, the disease may be the victor of the body but not of YOU.

My Bert has been keeping his vow without fail.  I will try to keep mine.

News Flash

I awaken to hear that a new report on Dementia says 45% of caregivers experience distress.  My immediate reaction was:  “Tell me something I don’t know.”  My next thought was: “I suppose the other 55% are only prone to the intermittent bouts of depression that does not last long enough to warrant attention.”  I have no doubt that every caregiver has those moments when the weight of care is, for a brief period onerous, too hard to bear.  Then you gird your loins and fueled by love, carry on.

The report was from the Canadian Institute for Health Information and looked at the impact on unpaid caregivers who were looking after their loved ones at home.  It mentions burnout, the emotional toll and the necessary extra daily activities among other factors that result in this distress.  Each situation is different but for me the most relevant is the emotional toll.

When friends inquire how I am doing I say I am fine, just tired.  That is true. Yes, I am physically tired but it is the emotional stress that gives me the moments of greatest distress.  When my husband holds a nightly conversation with his mother’s photograph, I am happy he has found a connection to the past that still resonates.  Yet, that is Alzheimer’s world. When I consider how my Bert and I worked together, planned together and the many chores he did with pleasure which falls on my shoulders now, I curse having to live in Alzheimer’s world

When I have to cajole my Bert to have his bath, or entice him with a sweet dessert for him to eat his salad, that is Alzheimer’s world.  When I have to lay out his outfit for the day, knowing my paragon of sartorial splendour would look like Bozo the clown if left to his own devices, that is Alzheimer’s world.

Two findings from the report were surprising.  It stated that:

In 2016, unpaid caregivers spent an estimated $1.4 billion on out-of-pocket costs. They devoted an average of 26 hours a week to providing care, compared with 17 hours for caregivers of other seniors.

The amount of the out-of-pocket expense was enormous I thought, until I began to add up the extra amounts expended for my Bert.  When multiplied by the number of unpaid caregivers it is a fact.  However, the real surprise was the number of hours of care.

The book, The 36 hour day, is almost required reading for caregivers of persons with dementia.  Some refer to it as the ‘Bible’ of dementia care. When I consider that I live a life for my Bert and also a life for myself, or try to do so, then my day is a 48 hour day.  In my opinion 26 hours a week even as an average, does not come close.

I never knew how much I valued my private time until Alzheimer’s entered my life.  My Bert and I were always together, but that was by choice.  I did not have a shadow permanently attached.  I could go to the bathroom without anyone coming to ‘see where you are’. I could make a shopping or lunch date with a friend.  Heck I could go to the hairdresser, manicurist, medical appointments, a Scandinavian trek with friends by myself.  I could go to Tai Chi or yoga, go on the computer or just get a cup of tea, my current book and curl up in my chosen spot to read without interruption. All that was lost. My shadow went everywhere with me. I have given up those activities that I cannot now fit into the two days Bert attends the Day Programme also known as his club. Every moment, every activity takes into consideration my Bert’s needs, wants, his schedules, his appointments, the state of his mind, his happiness.  Every plan is subject to the whims of the disease.

I applaud the researchers and authors of the report.  It validates what has been empirical knowledge. I hope it may result in some real support for caregivers.  Currently, the focus is on the disease and the patients.  However, Dementia is unique in that it may be the only disease that negatively affects the unpaid caregiver as much as it does their loved one.

The Meander: Perhaps my greatest emotional toll results from the illogical behaviour, the deep memory loss the disease has brought to my Bert.  My heart aches each time I want to say “Remember….”  I catch myself and I am filled with regret because I can no longer reminisce with a husband with whom I have created and shared a lifetime of amazing memories.

 

 

 

The Drop Sheet

Bert had me smiling at breakfast.  He has kept his sense of humour and makes me laugh. That is a saving grace as we make our journey through Alzheimer’s World.

My Bert can be a messy eater. You can tell where he sits at the dining table because of the many crumbs around the chair. The usual napkins are not doing a good job, so I take out some extra large dinner napkins and tell him that from now on we would use those.  I place one on his legs tucking the ends into his belt.  It completely covered his lap.  Bert, giggling, looked down and said: “ I have a drop sheet.”  We just roared with laughter.

Was Bert remembering the painting business he owned long before I met him? That reference, plucked from the recesses of his mind was so apt, we laughed together and started the day and the week off on a happy note.

At lunch Bert seemed to be waiting for something although everything was on the table.  I said: “Is everything alright?”  He answered:  “Where is my drop sheet?”  Another big laugh. I guess from now on a napkin will be a drop sheet.

In Alzheimer’s World the past is more real than the present. I know by dinnertime he may just spread the napkin on his lap and remember nothing about his paint business, drop sheets or our conversation. For now, I savour the moment.

There is a knock and I answer the door. The delivery I expected has arrived.  I take the package and sign for it.

“Where is the ticket?” Bert asks.

“Er…umm which ticket?”

“You have to get the ticket.  I have to bill the customer.” The penny drops.  He is back to being CEO of  his courier service.

“No, love, the man delivered to us.  He takes the ticket back to his company.”

“Why did another company do the delivery?”

“Because that company does deliveries for the one sending me the package.”  There is still a puzzled look but no more questions.

Two days later.  “It is forty-five dollars.”

“ Um, forty-five dollars.”

“Yes, that is the charge for the delivery.  You have to collect it”

“Oh, alright, I will collect it tomorrow.  No problem.  Would you like a cup of tea?”

“Oh, Yes. That would be good.”

“I want one too.  Put on the kettle please.”  He goes to the kitchen and I say: “You can deliver it to me too.”

“Ok, but you will have to pay me.”  He glances back with a look that says clearly: “Gotcha.”

Bert sold his company in 1995.

….

Dinner is finished, dishes done and Bert is doing his last chore of the day – closing the shutters.  The guest room is last as usual and he  spends more time there than it takes to close those shutters.  I know what he is doing.  Soon, I hear a chuckle and out he comes.

“I just finished talking with Moeder (Mother).  I told her I did the dishes and put them away.  She said she hoped I washed them better than the mussels.”  We laugh.

Bert ‘talks’ to his mother’s photograph every night.  The mussels is a reference to the war years.  He has told me he and his mother would wait two or three hours at dawn to get a pail of mussels.

Sometimes she tells him not to ‘fall off the sacks’ which is another war memory. He and his mother would go to farmers  and ask to pick up any stalks of grain left on the field.  After receiving permission it might take them the entire day to pick up a full sack of grain.  On one particularly good day of garnering,  Moeder tied two full sacks to the back of her bicycle and told Bert he would have to walk beside her as she could not take him as well.  According to Bert, as she started to pedal slowly so he could keep up he took one flying leap and was atop the sacks of grain.  Moeder was amazed, terrified and worried about him falling off all the way home.   He would end with: “It was hot, I was tired. I was not going to walk home.”

The Meander:  Bert demonstrates his love for me each morning he sits across from me and watches me eat my oatmeal.  Bert does not eat anything that resembles ‘pap’ (porridge) or even cereal.  Ask why and he will tell you: “That’s all I had during the war.”  Not quite true but it is mussels, yes, porridge no.

There is a poignant exigency to hold on to Bert’s memories.  How long will he remember?  I have heard them hundreds of times.  When he forgets, I will remember for him.

How do you do it? Alzheimer’s Society Help.

 

Once the diagnosis of Alzheimer’s disease was confirmed my first reaction was:  Oh my God, what do I do now?   I think this is the usual reaction.  Bashing your head against the nearest wall (bad headache), tearing out your hair (pre-mature baldness), screaming to the high heavens (how uncouth)or jumping off the nearest cliff (splat) may come to mind but none of that will work

So, what do you do?  Find help.  In some cases that may be easier said than done but fortunately in my case, living in Canada and in a City with a high  senior population and services gave me an edge.

Once you have confirmation, if you just go on your computer and start a search for dementia or Alzheimer’s disease you will be able to build that cliff from maybe just one percent of the information you see and it would still take you a while to hit ‘splat’.  Once your eyes uncross and your mind un-boggles find the home page of your national Alzheimer’s society, www.alzheimer.ca in Canada. Help is immediate as you will get direction to your Provincial and Regional and Local offices.  You may be tempted to linger and start reading right away when you see the Quick Links.  Don’t.  Go directly to your local office.  You will thank me when a quick call results in an invitation to visit accompanied by a brief conversation on the kind of services provided.

Why stress ‘local’?  On my very first visit I received information about current programmes, workshops, seminars, activities for both loved one and caregiver, jointly and separately.   First Steps and Next Steps are just two seminar series that help you get a grip on the disease, the impact on both partners and future considerations.   They are exactly as stated.  What to do and expect first, what comes next including making a will, financial issues, medications control, real  estate, funereal funeral considerations,  all done by the appropriate professionals. Your local office is connected to resources and services.  No need to wonder why all this is important.  Let’s be practical, some things had better be done before your loved one has lost too many brain cells to know what is happening.  The legal ramifications alone can be beyond horrendous. Also, as long as your partner can function well,  I know that two heads are better than one.

But, best of all I was connected to a counsellor.  I could call the office ask for a particular person, tell her/him my issue and be guided, helped, and given information so that I could make informed decisions about my Bert. Local also meant that the places I needed to go, the services I needed to access were all within easy reach.  My local office had not just a description of the service and address, they also had a name.  I could ask for a person.  They also made some calls on our behalf.

The people in my local office are extraordinary.  They will help you to curb your attempt to take every brochure available, explaining what should come first.  They are professional, caring, experienced and excellent listeners. They are the biggest boosters of caregivers and remind you to take care of you first, so you are able to take care of your loved one.  This is one of the PhD courses at my Alzheimer’s University.  It is so difficult to do this. Caregivers need to be reminded and your counsellor will do the reminding..

This was my first stop and it is still a most important link.  If I have not connected with my counsellor for a while I will get a call just asking how things are or to give me some relevant information.  She is aware of my Lifeline, the wonderful support group, as all we Lifers are connected to our local Alzheimer’s office. She applauds that.  She knows that the Lifers connection is very important.

The Meander:  Sometimes we find it hard to ask for help.  Being a caregiver will soon cure you of that.  You cannot do it alone.  You cannot do it alone. Ask for and take any help you can get.  We all need it. My Lifeline family and my Alzheimer’s Society local office are two of my companions on this journey.  I am well served and blessed.