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.

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.

 

 

Blips and Dying Cells

If you are a caregiver to someone with dementia you are a keen observer.   Or you become one.   Before diagnosis you may have been that person who would not notice the nose on your own face or anyone else’s for that matter.   Dementia brings out the sleuth in you though as you become the keenest observer of your loved one. You have to be.

My Bert has Alzheimer’s disease and the best way to monitor changes and give care is to observe.   It is the caregiver who must see the changes, decipher the small ticks, make sense of the seemingly minor blips that occur when least expected.  You can only discover them by constant observation and comparing over time and remembering what was as opposed to what is.

Here is a tip.  Keep a journal of observances and take it with you whenever you go to see your medical professionals – family physician, geriatric psychologist, mental health counsellor, memory clinic, case managers.  Record every change and new behaviour. The importance in recording is that it will act as a sign post to what comes next.   Alert Day Programme staff for your need to know how your loved one spent his day and any new behaviour noticed.   The more you record and document the decline and note the specific changes of your loved one, the better able you will be to work with your health team to enable them to provide the best care to both of you.

I give my Bert some towels and ask him to take them to the laundry room.  He takes them, looks at them, turns to go then appears puzzled.  He holds the towels, walks to every door and around the dining table, comes back to the kitchen, sees the door across from it,  opens it and puts the towels in the laundry room.  This was a first.  I record it.  Is this a blip or did a few more cells die?  Two days later this is repeated.   Then he tells me he is going to the bathroom and he wanders around before finding it.  Now I know a few more cells have died.  My Bert is getting lost in our apartment.

Blips are easy to deal with as they are usually a onetime occurrence.  Usually you can decipher what caused it.  As example, my Bert saw a snake in his shoe just once.  Thank goodness.  A snake appeared in a show he watched before going to bed.   You can ignore those oddities for what they are, blips.  Cause and effect are clear.  On the other hand, dying cells manifests themselves in inexplicable behaviours that indicate deterioration and clear progression of the disease.  You can tell when brain cells die as the new behaviour becomes his norm, or when previous everyday knowledge is lost.

As is always the case nothing is as simple as it appears.  Can blips recur and still be a blip?  Yes.  For the last six months my Bert has been going on a trip.  First, on our way home from his ‘club’ he asked me if the suitcases were packed.  Then two weeks later he woke me up as he was  looking for the passports.  A month later, in the middle of the night he saw some friends outside the bedroom who were travelling with us.  Next there were two people sleeping with us in bed which he called ‘the deck’.   Just last month he wanted to know if I had gone to the bank for the travel money.  These are not blips to me.

Travel has always been important to Bert and me.   Now, as soon as we meet anyone, old friend or new the first thing he tells them is that we have travelled all over the world.   Ask him a question of which he is not sure and he will tell you: ”My wife and I have travelled all over the world.”  The question might be: “What time is it, or, where do you live?”  Answer: “My wife and I have travelled all over the world.”  Blips and dying cells are my most non-professional designation for changes and oddities of living with a person with dementia.  This obsession with travel is neither of those.  I call this hard wired memory recall.  I know my Bert well enough to realize travel is such an integral part of his life that this will be one memory that endures.  In this case there is no blip nor have any cells died.  Rather the cells are being kept vital by the hard wired, happy memories of travelling the world.

The Meander:  The only thing predictable about dementia is its unpredictability.  I hope any recurring hard wired memory is one that brings happiness, encourages communication, and enhances social interaction.   I will pack suitcases, get passports, buy foreign exchange, and travel with invisible friends every day if my Bert wants me to do so.  After all by next day, or next week I may have to start all over again.   Not a problem as long as my Bert is happy.

 

 

 

 

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.

 

 

I Am Thankful

Gratitude n. being thankful, appreciation of and inclination to return kindness.

I believe that every day there is something for which we can all be grateful.  It can be small or large, internal or external.  It can encompass all nature, thought, the physical as well as the meditative.  No doubt you have heard the variation of the theme of being alive.  The simple, polite inquiry of: “How are you?” will bring an answer like: “Well, I’m still alive” or: “I woke up this morning so everything is good.” My favourite answer is: “Well, I am still on the right side of the grass.”  That always brings a smile to my face.  I am grateful for that smile.

However, these last few days I have been filled with a special kind of gratitude.  It is one that came after my unwanted but necessary visit to the ER.  I am feeling poorly, in pain and my number one priority is the care for my Bert.  How will I cope?  There are so many little chores to see to, too many to count.   I was worried but I should not have been.   We are blessed by having the sort of neighbours and friends that come to your aid swiftly, competently, caringly, without question.

I am grateful to the Lifeliner who was at the door to pick up the prescriptions and get them filled.  I am grateful for the neighbour who instantly took away the worry of getting my Bert to his Day Programme.  “Just tell me what time to pick him up and I will take him.”   How precious an offer that was.  Here is someone my Bert will find familiar enough to accompany without a fuss.  I can go back to sleep and with the Valium still coursing through my body, I have no choice, really.

Then there is the neighbour who brought dinner in a beautiful wicker basket which had everything including two lovely serviettes, such a cheerful and most welcomed gift.

I am grateful to the Lifeliners who could give practical, hands-on help and those who could not who sent words of cheer, good wishes and prayers.   I even got instructions to turn off the phone.

Once friends heard, the offers kept on coming with a couple wondering why I had not called immediately.  When I explained that I was calling the ambulance at 2 A.M. the reply was: “You can call me at anytime.  You know that.”  Yes, I do and I am grateful.

Our family of friends and neighbours came through like a ray of sunshine to scatter the dust motes of my anxiety.  Yes, we do appreciate the kindness and have more than an inclination to return it.  That is how kindness works.  There is a continuous lightness of being, a positive feeling that things will work out well.  I am grateful to all the people who turned my darkness to light.

Thank you!

The Meander: In this troubled world where everything seems so dark, selfish, and full of hate it is good to be reminded that there are so many more people who are kind, thoughtful, caring and filled with the milk of human kindness.

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.

Red Lines

Caregivers make decisions regarding every area of living both for  their loved ones and themselves.  Some are more difficult than others.

Though not inevitable, a decision whether to place your loved one in a Long Term Care facility will arise.  It is better to face the prospect sooner rather than later and learn every aspect of such a move before it becomes necessary.   As I write this, winged dragons are dancing in my stomach.  It is perhaps the most difficult decision a caregiver will ever have to make.

Thank goodness there is no dearth of information, advice, counselling, and help.  They all agree as to when you have to consider this option and the indications you cannot, must not ignore.  The major ones are:

Wandering: Nearly 65% of people with dementia will wander. There have been reports of patients being found a hundred kilometres or more from home.   There may be some elusive memory that triggers the wandering but really there has to be no reason.  That is the nature of dementia.

Falling: Dementia affects mobility especially in the later stages.  This is a particularly worrying one as it involves the safety of your loved one.  Sometimes the situation is aggravated by osteoarthritis, vision problems or other underlying health issues.   Additionally, the carer may not be physically able to care for a loved one who has fallen.  There comes a time when frequency will dictate a move to a more controlled environment.

Aggressive behaviour:  Here the patient becomes a danger to self as well as to the carer, family, friends, and strangers.   This is a crisis situation.  Safety becomes the major consideration.

Sundowning Syndrome:  The darkening day, night time or plain confusion between the two may result in this syndrome which manifests itself in major anxiety attacks and very aggressive behaviour.   This syndrome can put the caregiver in a very deep depression, as well as physical danger.

Escalating health care needs:  There may come a time when the caregiver just cannot tend to their loved one.  Their own health issues, their lack of training, their physical or emotional state becomes so fragile that caring for another becomes just too much.

There is no one to help:  When everything falls to the one carer then burn-out is almost a given.  The disease is such that friends and family may slowly disappear leaving just the one to cope.  Depression is the result.

The caregiver’s own health issues have multiplied, or become worse:   The caregiver now needs a caregiver.  Plain exhaustion will only aggravate the situation to the point where neither carer nor patient  can function.  One or maybe both need care.

Complexity of needs of the person with dementia:  In the later stages of dementia so much may be needed by your loved one such as walking aids, complex medications, help with eating, dressing, toileting, speaking, and equipment to help with basic daily living.  It becomes overwhelming for the caregiver to have their loved one living at home.  The decision must be made to place them in a facility where specialized services and equipment will be available.

Much credit is due the Alzheimer’s Society of Canada for the above.  Nearly every piece of research will echo these reasons for considering  a long term care facility but the Alzheimer’s Society has brochures on every aspect of this gut-wrenching decision and there are many to contemplate.

Despite the clarity of these red lines I believe each caregiver may have  additional ones.  Those would be personal and particular to the relationship they have with their loved one.   I bow to the expert advice; however I have two to add that is specific to my Bert and me:

My Bert does not know me:  This may sound trivial but our life story is such that the day my Bert looks at me and does not know who I am will be the day I know he IS the disease.

Physical abuse:  That is the culmination of aggressive behaviour.   He curses?  So, what?  He is angry?  He has a right to be.  However, the day my Bert lifts his hand to strike me will be a definite red line.  Hitting a woman, any woman is not in my Bert’s DNA.   That would be Alzheimer’s Bert not my Bert.

These two situations would ready me to make this most difficult decision.  My rationale is this:  As a caregiver to my Bert I am the one fighting the disease.  I am the one pushing back with love, care, hope, creating an environment of calm, kindness and comfort.  My Bert cannot fight against something he does not understand and which robs him of himself so I fight for HIM.  This new entity would be an alien, a walking disease.  It would be unbearable.

The Meander:  If I ever have to make that decision, I will do it out of love.  My Bert deserves that.  I will do my utmost to ensure my Bert gets the best care for his daily needs while I continue to care for his beautiful soul.  That is one thing Alzheimer’s cannot take from my Bert.

One has the disease, the other is sick

“One thing you must learn, and learn fast is that you have to look after yourself first.”  The counsellor held my hand and was looking in my eyes as she said this with deep sincerity.

Teary eyed I looked back.  “I know what you mean.  I know if I am not able to look after Bert….”  I did not want to finish.  In a moment of insight I said: “You know, with this disease, one has the disease but it is the other that gets sick.  The problem is that it is the carer who gets sick while the one with dementia becomes more dependent.  They suffer less than the caregiver.”

That is one of the anomalies of Alzheimer’s. These were early days and I wondered how it could be that someone who was slowly losing their faculties could suffer less than the one caring for them.   That cannot be.  It must be so terrible to be losing your memory, the thing that is so vital to our being.  The one thing that gives us continuity that links us to our past, our family, our friends, our community, shared experiences, our roots and is a crucial component in our evolution.  At that time I had not yet discovered Alzheimer’s world nor realized that I had to live in two worlds.  At that time I did not realize how much communication, everyday talk was important to my relationship with my Bert.  We had always been a very connected couple, or as my Bert often said: “Where you see me, you see Paula.”  At that time I did not know that I would ever feel claustrophobic, imprisoned and caged by my Bert’s love and the deep shadowing which is a hallmark of the disease.

Yes, he has the disease but I am the one that is sick.  I am sick of being responsible for everything.   I am sick of seeing my vibrant, voluble, caring Bert struggling for a word and sleeping too much.  I am sick of my social butterfly Bert sitting through dinner in a restaurant without saying a single word.  I am sick of caring for my Bert, my husband, as I would a child.

Caregiver care is not for the basics only; it is care with love, with respect; it is care that must preserve the dignity of our loved one.  It is knowledge based care of one human being that is also the one with whom you have shared a lifetime.

Caregiver care is living for two so dementia puts an extraordinary onus on us, turning our existence into a two for one special.  The conundrum is that it is special.  This awful disease elevates ‘sharing’ to a new level.  It forces you to share the physical, the mental, and the emotional in every possible way that can be imagined.  Still it is not a true sharing.  It is the caregiver who does the sharing for two and so falls prey to illness while caring for another who is slowly dying.  Depression, a compromised immune system, increased susceptibility to common ailments as colds, headaches, and my personal bête noir,  lack of sleep which has its own subset of ailments, are just a few caregiver ailments.

What can you do?  That is the million dollar question. Having a caring counsellor, seeking out  all areas of support, having a Lifeline group, a good diet, getting some exercise, Yoga, Tai Chi, scheduling an activity you love on a daily or weekly basis, Mindfulness and meditation are all good  IF YOU HAVE THE TIME!

The Meander:  I have taken my first prescribed sleeping pill.  I would rather not.  My Mah-jong time is sacrosanct,  I eat well but do not get enough exercise.  I do not know how I would survive without my Lifeliners.  Every now and then my counsellor’s words reverberate but the ‘first’ is bothersome.   My Bert is the priority.  If I am lucky, some days I actually come second.