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.

Resolutions

No doubt resolutions are being made left right and centre.  Resolutions are being broken even as I write.  Resolutions made at the stroke of midnight as 2019 dawned are already in the trashcan of what might have been.  I rarely make resolutions even though I see the New Year as an opportunity to begin anew, to look forward, even to dream and to plan.  However, to continue my ruminations on 2018 I have decided to take a leaf from Melinda Gates’ book and choose one word to guide me throughout this year.  It has been reported she does that and since I am not that enamoured by resolutions this seems a good alternative.  I have chosen ‘Light’ to be the word that will guide me throughout 2019. I have decided to walk in the light to see the light and whenever possible to be the light.  It sounds laudable but  I have to acknowledge that this may be the hardest objective I have ever set.  Yet at the same time I have some confidence that it is the one I may be able to attain.

So far keeping resolutions has not been my forte.  I am going to lose weight is a recurring theme which starts with gusto and swiftly ends with gusto – usually with the Valentine chocolates.  I am going to start and stick to an exercise regimen.  Yes!  Except that I have not decided which year this is to begin.  Since I make the resolution at midnight I should begin on New Year’s Day.  If I have stayed up until midnight I am too tired to start that day, and by January 2nd the enthusiasm has curbed to the point of lethargy and there is a book somewhere that is calling me.  How much more civilized to exercise in such a peaceful, restful, and for me the necessary occupation of reading a good book while swaddled in a soft throw and curled in my favourite chair.  The mind needs exercise too!

This year I am transitioning from the ridiculous to the sublime of resolution making.  No resolutions, just   a word and determination.  Walking in light, seeing the light, being the light is incredible conceit, a pipe dream, or maybe setting me up for failure.  Yet I think, even though it is only day five, that I will succeed better than I have ever done before. 

Living with a loved one with Alzheimer disease is living in darkness.  Caregivers know that because until this we have lived in light.  This is my first purposeful plan that is not me focused.  This is for my Bert.  My Bert needs light.  He needs to see the light outside, inside and see me as light.  His happiness is my light, my happiness is his light.  Caregivers live for two.  I want to shine a light for my Bert, for other caregivers and everyone I meet.  Still I am being selfish as I believe I will benefit the most if I succeed.

This is also the first plan that will perforce depend on outside help.  It is family, Lifeliners, friends, counsellors, my support system who will walk in the light with me, seek to see the light with me and encourage me in my efforts to be the light.  They know and they care.

The Meander:   “Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” — Helen Keller

This is from someone who knew the dark intimately.  I wonder how invincible I can be against Alzheimer disease.   Then again it is not a ‘difficulty’ it’s a disease. I do not have to be invincible.   Come walk in the light with me. 

Ruminations on a Year-2018

We look at the world; the world looks back at us.   Some call me brave.  Brave?  Far from it but I do accept responsibility.  They call us a loving couple and that we are.

“Oh, Bert looks so well, you would hardly know he has Alzheimer disease”.  If only they knew.  I choose to accept the compliment on behalf of both of us, after all carers get so little thanks, if any.

“How can you write so positively about your situation?”  I choose to do so.  No, I do not have a Pollyanna complex.  Rose coloured glasses obscure too much.   I have to see clearly not just for me but also for my Bert.  I hurt.    Of course I do.  However, I am grateful that I do see the glass half full and have been blessed by an offbeat sense of humour and with a partner who makes me laugh.

“You are a Saint.”  Hah!  Leave that sobriquet to Mother Teresa.  There are times when I must be more akin to the devil incarnate.  Have I experienced bitterness?  Yes, but as Norman Vincent Peale said: ”Change your thoughts and you change your world.”   Sure I will have negative thoughts; they come with the territory, but I hope they are not bitter.

In 2018, the learning curve reached a peak.  We sit on a plateau not knowing when the change will come.  Will it be again upward or will it be a downward helter-skelter tumbling into the abyss?   More than likely it will be a combination of upward learning as we tumble ever downward.  I choose to let the future be, holding on to the present and refusing to be weighed down by the past.  2018 taught us we can live, differently yes, but live nonetheless.  This is neither bravery nor sainthood, just accepting the things we cannot change.

In 2018 I learnt banging my head against the wall only results in a headache. Therefore I count to ten or maybe twenty or maybe…  I must be long past a million by now.

In 2018 I learnt that I am actually quite pragmatic as I know I have to acknowledge the darkness.  I have to grant how awful, how evil, how depressing this disease is.  Yet I must also look for the infinitesimal spark of light within that darkness.

2018 taught us to live by smalls, like small mercies, small moments, small comforts, and small miracles.  We learnt to wonder at the beauty of one song within the symphony, one iridescent droplet after the rain, one star within the constellation.  In a shrinking world our universe expanded.

In 2018 I would sometimes awaken with tears streaming and fall into a chicken and egg reverie.  Are these tears of joy for a rare good night’s sleep or is the sadness deep in my soul finding release?  I try to unravel the conundrum while in my suspended animation shifting between waking and sleeping I endeavour to decipher the meaning of the tears.

The yin and yang are played out in every way thinkable every day.  It seems that happiness and sadness are always holding hands, walking in tandem and interlaced with uncertainty.  What’s next is an ever present question and the answer is always we do not know.

The Meander:  As a new year dawns I promise myself that when I see myself sliding into the slough of despair I will ponder the imponderables:  How can there be darkness if we do not know light; how can we know good if there is no evil.  I can be joyful because I am intimate with sadness.

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.