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.

 

 

Still Here

Life does not end when Alzheimer’s begin.  That was the gist of the #Still Here campaign launched by the Canadian Alzheimer’s Society in 2016.  The truth of that cannot be denied but the necessity to make a campaign about it attests to the fact that Alzheimer’s disease culminates in life’s end.

Bert is definitely still here.  I have empirical evidence.

A few days ago I woke with an excruciating pain radiating from behind my left ear down to my shoulder.  It was perhaps the worst pain I have ever had, and that is coming from someone who has given birth.  It was horrendous.  I could hardly get out of bed and having succeeded could not get back in.   My Bert woke and was immediately concerned that I was in pain.   I got the pain medication Bert got the glass. To take it I had to fill the glass to the brim and sip carefully as Bert held the glass as I could not move my neck in any direction.  No relief.  Bert kept fussing wanting to know what he could do so I sent him back to bed.

As I could not sit, stand or lie down I knew I had to get some help.  As a caution I chewed two baby aspirins and decided to call for an ambulance as it was 2:15 a.m. in the morning.

Bert had fallen asleep.  Of course, he has to go with me.  He cannot be left alone and we would be fast forwarded into World War three if that was even suggested.  I must give thanks for small mercies however, as my Bert can still dress himself.  Instantly awake his first concern was for me.  He did as told then said: “I am ready but I did not shave.”  I told him that was OK and he could shave when we came back.

I got my Emergency Information Vial from the fridge and handed it to the Paramedics.  They were pleased and went through the twenty questions routine while checking all my vitals.  Having ascertained that it was muscular-skeletal in origin and not cardiac related I was placed carefully in the ambulance while Bert sat up front with the driver.  He kept asking them if they were going to make his wife ‘right’.   By now they were aware that my Bert had dementia from the vial information and from me.  I just wanted the ride to be over.  We were travelling on streets I travel almost every day but had never realized how rough they were as every jolt was another stab of pain.

At the hospital we went through the formalities very quickly and my Bert, clutching my purse, was with me every step of the way.  He had just one statement and question to anyone who came to see me:  “My wife is not right.  You can make her right?” As my Bert said this over and over I noticed he was picking his nails, a sure sign of anxiety.

So picture this. Here is a woman whose head is slightly bent forward who cannot move her neck so only the eyes move as each person comes to get information.  Seated beside her, clutching a woman’s purse is a man who keeps telling them to make his wife ‘right’.  If it did not hurt I would have laughed.  This could be a Monty Python skit, I thought. Others in the waiting room looked on curiously but kindly.

A doctor saw me after about an hour and a half, took one look uttered some medical jargon which translated to ‘all the muscles in your neck are in spasm.  It must really hurt but I am going to fix you up right away’.

The doctor left and fifteen minutes later a nurse came in and injected me with Valium, enough for a horse it seemed to me.  I also got two different pills and prescriptions for them and for a liquid rub.

As we left I heard two people talking:

“It’s a good thing she did not have to stay here.  It would take a crowbar to get him to leave her.  They held hands all the time.  That’s love.”

“He looked sorta cute with the purse too. “  I smiled but I was a bit sad too.  My Bert before Alzheimer’s would be just as loving, caring, protective and watchful over me, but he would have been also the proverbial bull in a China shop, ranting and raving and calling on all the powers that be to make his wife better and NOW!

The Meander: We know that emotional attachments go very deep in dementia patients.  Caregivers relish those moments of sudden unexpected lucidity, those moments when old narratives play out and love reigns.  The Bert wanting to make his wife ‘right’ is my Bert.  He is still here.

 

 

 

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.

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.