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January is Alzheimer’s Awareness Month.

On New Year’s Eve I wrote some thoughts on the sacrifices caregivers caring for persons with dementia must make as they care for their loved ones.

No matter how much you give you are called upon to give more. Alzheimer’s is a disease that takes. As a caregiver you give.

I share my thoughts here:

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We never know how much MORE we can be

The greater the challenge the MORE you find

You can be MORE

You never know the depth or height of being until

You are tested to be MORE

When you know you have reached your limit

You discover the unknown MORE

Trust your MORE

Be bold in your MORE

Speak your MORE

To help others

Find their MORE.

The Meander: Thanks to those wonderful care partners, the Personal Support Workers (PSW) who everyday wherever they work give MORE.

Morning Shock!

Did I hear that correctly? A 19 year old has been diagnosed with Alzheimer’s? I was shocked. I immediately thought, well, okay this is obviously a case of Early-Onset Alzheimer’s but I had never heard of one beginning so early.  The next thought was that the cause must be genetic.  Another consideration was that he must have been engaged in dangerous activities that damaged his brain. I remained skeptical wondering what kind of activities could maintain that amount of continually repeated head trauma to one only 19 years old to result in a diagnosis of Alzheimer’s.  It did not compute in my unschooled brain.

This I had to check out and was led to a Study in the Journal of Alzheimer ’s disease which gave details of the case.

The confirmation added a profound sadness to my shock. Here was a young man on the cusp of manhood whose life, hopes and dreams were all ahead of him now stymied by this deadly disease. Instead of moving forward to a bright future he would now be regressing to the inevitable end. Would he live long enough to receive the first known cure for the disease? The more immediate question is would he be able to take advantage of any cure that may emerge given the unpredictability of the progression of the disease?

General opinion is that only old people get Alzheimer’s.  It should be noted that old age is not a cause of the disease but one of the markers.  The older you get the more susceptible you are to contracting the disease. Early-Onset usually refers to those who contract it at younger than 65 years of age. But being diagnosed at 19 is rare, actually non-existent until this case.

I thought of the parents. If your child complains of being forgetful at age 17 Alzheimer’s would be your last thought. Any number of issues facing a teenager could be the cause of the laziness of the brain. It could be a growth spurt, suddenly raging hormones, lack of sleep or perhaps a creative excuse for a bad report card. None of these seemed to be a factor here. I would guess that a pediatrician given this symptom would not have Alzheimer’s top of mind, if at all. It took two years for the diagnosis of probable case of Alzheimer’s to be diagnosed. What was more frightening was that there were no markers to indicate that this was caused by genetics, a more acceptable and plausible explanation.

No doubt this teen will be studied in minute detail, every change in his behaviour scrutinized to the nth degree. His parents will not only have to grapple with the diagnosis but also find the empathy and strength to watch as he becomes a human guinea pig. As critical as it is to find out how this adolescent contracted the disease it will also be an agony for them to see the slow deterioration and watch as researchers learn from him.

Alzheimer’s has stretched out a long arm to touch a teenager. In so doing we must rethink the pathology of the disease. I have felt deep sympathy for fellow caregivers whose spouses died at 47 and 52 years of age.  The feeling is that they died much too young and that was after living with Alzheimer’s for a number of years. I could empathize. I could find words of comfort as I went through my own caregiver’s journey. What do you say to a parent whose teenager has Alzheimer’s?

 I hope these parents will record and celebrate the moments of joy that come with living and caring for a loved one with Alzheimer’s.

The Meander:  On behalf of all persons living with Alzheimer’s and their caregivers, a big thank you to the parents of this young man. I hope their love and sacrifice and some diligent research will result in a positive outcome that advances knowledge and greater understanding of the disease. I also want to remind them that they are not alone.

Muted and Fading

The wheelchair is in the usual place beside the window.  The view is the same.  It is that very narrow slice of the world comprised of the patio, the gardens, over the street to the restaurant, a parking lot and backyards. The passing vehicular traffic provides the only change in scenery.

Walking up to the wheelchair I see my Bert, head upright with eyes closed but not asleep.

“Good morning my darling.  How’s my Bert today?”  The eyes open slowly. I smile and a tentative smile is returned.  I whisper “I love you” close to his ear and he nods his head.

My Bert no longer utters even one word.  He no longer speaks.  The man who would laugh when I told him that one formula for our happy marriage was that he talked and I listened is now muted.

I begin to describe the scene in front of him as with advancing macular degeneration I am not sure that he sees even that narrow world with any clarity.  He reaches for my hand and then we play the usual game.  As I try to take my hand away he tightens his grip.  He smiles when I cannot get loose but this game is no longer usual.  There was a time not long ago when I had difficulty loosening his grip.  Now I am half pretending. I still my hand and he hangs on now rubbing my thumb up and down, up and down.

He has said nothing.  He is permanently muted.

The birthday balloons are still hanging by the window.  They hover half-heartedly. I had wanted to discard those two weeks before but when I told him I would put them in the garbage my Bert shook his head.

Today as I look at them and see the slow seeping out of the gas, look at their wrinkling softness and see them drooping towards the ground, I see them as a metaphor for my Bert. He too is losing his gas, his vitality; he too is wrinkling, shrinking and losing weight. He too is losing strength and settling into an unhealthy softness.

I am seeing Alzheimer’s Bert today. The disease is taking my Bert.  He does not walk, he does not talk and he lethargically succumbs to having everything done for him and to him.  He understands when asked to open his mouth for the next drink or spoonful of food. He nods, he shakes his head he clamps his teeth when he does not want to eat. He is not eating well anymore so he gets meal replacement supplements. He drinks better than he eats. I am grateful for that.

I find that living in ‘smalls’ is becoming more important as the ‘smalls’ are getting smaller. Just six weeks ago the small joy was the brightening smile and the shout “That’s my wife. That’s my Paula” as I entered the room. Now it is that tentative smile and the holding of hands.

I am getting used to Alzheimer’s muted Bert. I am getting used to Alzheimer’s Bert who can hardly keep his eyes open and the Alzheimer’s Bert that is the epitome of weariness.

I sing to my Bert and show my love the best I can. I overreact at the smile, the nods, the eyes that open one at a time or together. I praise a clean plate and emptied glass. I compliment his attire, his hair, his clean shaven face, his smile.

And I grieve.

My Bert is fading.

The Meander: I am beginning to wonder when enough is enough. The heart and the mind are in a constant battle.

MEET THE AUTHOR (Come say hello, if you can)

AUTHOR SIGNING EVENT

Indigo Books Burlington Centre – Store #977

777 Guelph Line

Burlington, ON

905-639-8860

September 25, 2022

11-5pm

90 Going On 2

I asked Alzheimer’s: “Is this the last birthday?”  It did not answer. There are some things even more mysterious than Alzheimer’s and beyond its reach.

Going on two is a misnomer. The reversal of life that is a hallmark of dementia means that the operative words are ‘going on’. A two year old child is more animated, more rambunctious, more vital, more mischievous and more aware than my Bert. Yet all those adjectives are applicable to him too. Add strong, resilient, great teaser, fun and you get an idea of my Bert the old man/child – when.

August is the busiest birthday month.  There are more birthdays to remember than days in the month.  There is one particular day which has four birthdays.

August is special too, as the two most important men in my life are both August men, both Leos and both precious.  They are my husband and our son.

August 2022 is noteworthy for my husband as he celebrates his 90th birthday. To mark the occasion 15 family and close friends gathered for lunch.  The food was good, the company great, the conversation flowing and the focus all on my Bert.

It was a far cry from the blockbuster parties of years gone by because my Bert is 90 going on two. Alzheimer’s is to be blamed for that cruel reversal.  The voluble, smart, life of the party, consummate host, charming Bert is almost mute.  That’s aphasia.  Just three weeks before he was talking up a storm but as that darn Mr. Murphy and his law would have it, he had lost the art of speaking by the time his birthday came around. He still says the odd word, with coercion, but you now notice the difficulty of pronunciation and how at times what he wants to say comes out garbled and sounding strange.

He nodded, he smiled, he understood.  He did not go to sleep, nor show disinterest.  He played with his niece, our son and daughter-in-law and held on to all hands.  He still has a firm grip. He remained alert yet it was a day that he was more Alzheimer’s Bert than my Bert. I hope I was able to hide the sadness.

The man/child was happy as the birthday cards came out.  There were cards that sang, talked, cards with dogs in a conga line, cards which lit up, 3-D cards, cards that popped, unfolded and were filled with pictures and photographs and other conversation starters. There were helium balloons that now decorate the sliver which is his world. They will remain as long as they are afloat, withering away slowly, fading, losing their substance and drifting to the ground, mirroring the slow decline and loss of heft of my Bert.

At 90 every day is worth a birthday celebration.

At two you are allowed to be happy every day looking forward in anticipation for what comes next. The future is before you. The sky is the limit.

At 90 my Bert lives just for this day. The present is always the only now and it is fleeting.

The Meander: Happy Birthday, darling. What a wonderful life. Your past is filled with amazing memories that you no longer can recall. No matter, I’ll remember for you.

Living In Reverse

Today this is the exact report for my journal under the heading: My Bert.

The Care Conference went very well today.  My Bert got a great report.  If he was in grade school he would receive an A+.

What is even more important is that I gave the Home a very good mark also.  My questions (I had notes) were all answered.  My concerns were addressed and we arrived at solutions that were agreeable to all parties.

My Bert is eating well at 70 -100% of his meals.  He eats 100% when I am with him and he is well hydrated as he drinks his liquids. We found a simple solution to my concerns about week four of the four week eating rotation.

The doctor was as usual professional, delivering advice, answering queries and giving explanations of medications and a history of Bert’s condition since the last Care Conference. This is all done with empathy and a degree of care not only for my Bert but for me too. I appreciate that.

The physiotherapist is focusing on both upper and lower body strength exercises and I do see the results whenever my Bert does programmes like Zumba, chair yoga and other group exercise sessions. Though wheelchair bound atrophy of the muscles is being slowed by physiotherapy.

Recreation reports are all positive. Bert participates well. He is ready for pet therapy, every kind of music programme, stretching classes, one on one activity and pampering, of course. Macular degeneration does not stop him from playing with the oversized jigsaw puzzles, blocks or cubes.

He loves picture books, especially if they are about cars, trains, airplanes and flowers and there is a good supply of them. 

The nurse had only good things to say about his manner, his friendly behavior towards staff, his amiability and the ease with which he accepts the few medications he gets. She credits some of that to my daily visits. I wonder if she knows how vital those visits are to me also.

It all sounds great and it is, but I cannot help feeling sad as I realize we are both living in reverse.  My Bert is childlike but not a child. I am both mother and father to my husband when all I want to be is a wife.

Creeping unheralded in the back of my mind is: Will there be another Care Conference?   Will I be writing about a great report, a bad report or no report at all?  Will I be wishing I still had a grandchild or perhaps a great grandchild in the form of a husband as I miss his presence?

The Meander: We are lucky to have Care Partners who care. They are the hardworking PSW’s and dedicated front line workers for whom the work is more than just a job. Yet I wish we did not need them.  What a terrible disease.

Two Berts

There is a recurring question from friends, family and anyone who knows that my Bert is in a home:

“How is Bert doing?”

My usual answer is: “As well as can be expected.”  This seems to cover the basics.  Depending on the relationship, the enquirer, the social interactions of the moment I might go into a bit more detail. My Bert is living in a Long Term Care facility so ‘fine’ or ‘very well’ seems inappropriate. 

Any further expansion is also based on the Bert I am seeing at the moment.  There are two Berts. There is my Bert and there is Alzheimer’s Bert.  In the book My Bert Has Alzheimer’s I devote some time to talk about the necessity, stress and the confusion of living in two worlds.  There is the real world and Alzheimer’s world.  Now I have two Berts. I invented this new duality as a coping strategy.

When someone has dementia their moods, actions, words, reality can change in an instant. It means that each day I visit my Bert I do not know what I will find. Will he be in a good mood?  Will he be morose?  Will his eyes light up when he sees me or will they look through me? His mood dictates my inner feelings too.  On those days when he lights up as I walk towards him; when he lifts his hand in greeting; when he holds up his head and purse his lips for a kiss; when he jokingly shoos away anyone nearby and  pats the chair beside him for me to sit: That’s my Bert.

On the days he looks sullen and shrugs off my greeting and remains silent, that’s Alzheimer’s Bert. On these days I try every trick in the book to bring him out of that negative mood.  Sometimes I succeed and sometimes not.  My expectations then become basic. He must eat, drink and be comfortable.  That is all.          

My Bert days are wonderful.  He is talkative.  He asks questions and pontificates on subjects that only he understands.  As example a few days ago he told me in no uncertain terms that the ‘things are moving’. After some cogitative expressions and a nod, in a very serious voice I said:  “Yes, they are.” That must have been an acceptable reply as he nodded in satisfaction at the answer. I am still unaware of what the things were and to where they were moving. So what?  My Bert was animated.

The very next day Alzheimer’s Bert was up front and personal. There was no greeting but a rather baleful look that clearly was saying: “Don’t bother me.” I donned the cheerful hat and in a clear voice said:

“Hey, are you not speaking to me today?  Come on; say something out loud to me.”  There was no response. The big grin I had was wasted under my masked visage.

“Oh, well.  I am still speaking to you and I love you.”   The word ‘love’ brings a flicker of interest but no verbalization. He ate his lunch, had his milk and juice but refused the water. No sweat. He had already had soup. This was clearly an example of you can lead a horse to water but you cannot make him drink.

I did not hang around after lunch.  During that entire visit I heard only one word: “No.”

A day later was a banner day.  The topic of conversation was happiness.  My Bert started the ball rolling with: “You are happy.”

“Yes, I am happy.”

“Am I happy?” he asked.

“You tell me.”

“Yes, I’m happy.”

“That’s very good.”  He pondered for a while and then said: “I’m happy. You’re happy. We are happy.” English lesson aside the grin on his face as he said those words was priceless. I laughed out loudly and gave him a hug.  He was delighted and for the next hour or so that conversation was repeated every five minutes. Groan.

Then I got a reprieve. It was barber day so down to the salon he went. I waited for his return.  He came back and his first words were: “Is it good”?

“Oh yes.  It’s a great haircut. You are my handsome Bert.”  He beamed. He wanted to talk but I was not up to another hour discussing the tonsorial splendor of his freshly cut hair.

No dawdling now. I give him the usual see you soon farewell and escaped.

The Meander: I love My Bert and wish I did not have to contend with Alzheimer’s Bert. I’m grateful that my Bert is the one that appears more often…still.

Lucky?

It is International Women’s Day.  I am in my car and the radio is playing in the background.  It is all about celebrating women today. In the usual banter the female host asks the male host about the women who have been important in his life.

There is a slight pause before the host begins to talk about his family and he focuses on a great aunt who raised his mother.  From his words you knew that this woman was the backbone of the family and that she held a special place in his heart. He said the worst thing he ever had to do was to eulogize his great aunt. He went on to say that she lived to a ripe old age living out her last years in a Long Term Care facility.

His next words were that they were ‘lucky’. The facility was a “good one, thank God.”

I cringed.

In a letter dated December 18, 2020 I wrote to Premier Doug Ford, Hon. Merrilee Fullerton the then Minister of Long Term Care and copied to a number of organizations relevant to Long Term Care. In it I identified a number of issues and concerns and wrote:

I am fortunate, feel very lucky and blessed that my loved one is in a good home.  Yes, sir there are good homes but what is wrong with that sentence?  No one chooses or wants to be in LTC.  They are there because they need to be and I believe that everyone in LTC should be able to say that their loved one is in a good home without a preface of ‘feeling lucky’ or ‘fortunate’ or ‘blessed’.

I still preface or expand my description of my Bert’s home using those same words and each time I have a sense of discomfort. Every person who needs to be in a long term care facility should be in a good home. It should be a given.  Standards of care should be the same, no matter where you live or who you are. No one should be dependent on the luck of the draw to be able to spend their last years in a good home.

The Meander: I am glad that lovely woman was in a good home.  How I wish all residents in long term care facilities were in good homes.

The Doldrums

I sit at the table. My Bert’s spot is empty. I have arrived early as today it is only screening and sign in to do before I go to my Bert.  If it was a Covid rapid test day my journey from the entrance to my Bert would be 20 minutes instead of five..  He will come out very soon, I know.

In the meantime I look out and see the empty patio of the restaurant across the street.  The OPEN sign blinks but it appears closed, desolate, and empty.

An ambulance drives by.  No siren, no lights.

A truck rumbles by and cars come around the bend, some much too fast.  My Bert loves to watch the movement on the street.  Sometimes we play a game. I tell him I will count how many red or black or grey cars pass by.  He will guess a number and I will guess another.  He is delighted when he wins the game of course.  He seems to win a lot.

My eyes drift downwards and see mounds of dirty snow. It is very cold and underneath the soiled snow is ice.  It has been cold for a few days now. A few pieces of debris that escaped the plows are frozen in what was once soft powdery clean snow.

A woman walks her dog.  Both are high stepping with an unaccustomed gait as they try to avoid the slippery icy clumps in the pathway. The recently cleared sidewalk is full of treacherous spots covered by blowing snow. I want to shout: “Watch out. There is ice underneath.”

My eyes move closer to our side of the street. Looking down I notice our patio is a jigsaw puzzle of ice, snow, browned grass where visible, skeletal trees and a still life of a Muskoka-like chair overturned and lying on its side. The storm had brought not only snow but also high winds.

The large gazebo looks forlorn.  The roof is partially covered with snow.  It is cold so the pattern is haphazard frozen in place by the final gust, and soon there will be no pattern if the weather forecast holds true.  There will be a white shroud covering that roof.

The smaller gazebo still has two chairs inside.  They are weather proof but I have learned to distrust the hype of weather proof furniture.  Will they survive to support residents or visiting caregivers through spring and summer and fall?

I long for spring.  I long to be outside with my Bert, talking with other caregivers, sharing experiences, greeting each other and bonding in new friendships made possible by a terrible disease that holds our loved ones in its thrall. I am in a dark mood. I want to see the naked trees begin to dress themselves in foliage that spans the green spectrum. A sigh escapes.

I hear before I see.

“Hey, Mr. Bert, look who’s here?”

I turn.  The wheelchair is silent and makes a noise only when it bumps the table as he is put in his spot.

“Hi, sweetheart. How you doing?”

My Bert looks up.  He smiles. He gives a thumbs up.

“OK. That is good.”  We both smile.

My once garrulous Bert is not talking much now. Yet he does talk.

He looks out his window and a flock of birds rise into the air.

“Look,” he says, “the birds up in the sky.”

I look up and see the sky, the birds, and their winged flight soaring high above.

I look at my Bert and he is smiling, taking pleasure in the simple flight of the birds. He sees the movement that tells him there are birds. His sight has deteriorated because of macular degeneration. Yet, he still sees.

I notice the smile remains in place.  He is content. I arrange my face to match his. I have to be positive. We begin the game.

The Meander: Moving from the Doldrums to contentment takes effort. I may find myself back in the Doldrums as soon as I depart.  But for now I will enter into my Bert’s world. 

Greetings 2021

Christmas 2021

 During this challenging year there were three things that kept me going:

My Bert – the daily visits are the highlight of each day.  He is happy in his world, content with his surroundings, full of good cheer, and best of all he still knows me.

Friends – they sustain, support, encourage, care, and will call even when I do not.  Thanks for being such understanding friends.

Laughter – I find that more stress only result in greater laughter.  It is good medicine.

We have weathered another year living with a pandemic.  We languish, bothered by the uncertainty and loss of control over our daily living, yet awaken each day with gratitude to be alive.  The rites go on as we welcome new lives, see love blossom, and attend weddings, and funerals via Zoom.  Even so we dare to hope that one day we will be free to be, not as we were before but better.

Here is a special greeting:

May you have the Spirit of Christmas which is Peace;

The Gladness of Christmas which is Hope;

The Heart of Christmas which is Love.

Merry Christmas and a Healthy and Happy New Year.

Good and Perhaps Last

We would celebrate come what may.

My Bert was celebrating a birthday.  Born under the sign of the Lion the pussycat relationship was at the forefront most of the time. Despite living under the thrall of Alzheimer’s it was time to celebrate another year. My Bert’s inner child is most apparent on his birthday.

The restaurant was alerted.

The amazing staff at his home assured me he would be ‘spiffy’ for his outing. He was.

The mobility transportation was booked.  The guests were all lined up.  Covid-19 curtailed the numbers, only eight in total and even so, physical distancing was the order of the day.

Yet, I worried.  What if the transportation was late or my Bert not in the mood or gets an anxiety attack.  There were so many ifs to consider.

The worry was a wasted emotion as everything went exceedingly well. As per the norm, my Bert rose to the occasion. He chatted, ate, drank, and kept smiling at everyone.  He knew Corbert and Amy and me.  The others were ‘friends’ and that was all he needed to know.

He surprised one by exhibiting his usual alpha male tendency by squeezing the hand offered to him.  It was so much the norm for both of them they had a good laugh.

Before leaving the home the young ones had decorated his room with a large peel and stick mural. Given the macular degeneration that has left him legally blind things have to be large and brightly coloured and well defined.  The mural was aligned for maximum viewing space as depending on where things were placed there could be a best place for viewing for him. The wheelchair needed to be at an angle for him to see it.  He touches the mural and says: “Pretty birds.  Woo lots of butterflies too.”

He is happy.  So am I. Here is some new scenery for him to look at. Each morning he sees the mural it is new and he is delighted.

I read the cards. He laughs at the funny ones and he wants to know who gave it to him. The only answer he needs is that it is from a friend.  I name them and add: “If you saw them you would know them.” He laughs at one of the cards from the kids which is actually from their dog. They know he loves to get cards so that is an extra and he loves it.

Is this the last birthday celebration? That is my anxious nature asking. It could be.  I do not know and I have no control over that.  As I observe his pleasure, his delight at the funny cards and his slow but happy smile when he finally comprehends the sentiments expressed, the question becomes moot. Instead I begin to wonder what the next birthday celebration will be like. I have every intention to celebrate it, given the chance.

What is surprising and most welcome is that on returning to the home, my Bert looked around and said: “Home again, at last.”

What a difference. When we had entered into this home just over two years ago I never thought my Bert would ever utter these words. But I know he is sincere.  This is his home and it is familiar territory. I am spending the rest of the day with him.  That’s even more reinforcement that he really is at home. My relief at his acceptance is more than that.  It also alleviates the discomfort I still feel when I see his shrunken world. Each day as I leave after visiting, he may ask me where I am going. I tell him the truth.  It could be to an appointment, grocery shopping, or to get gas for the car but often it is “back to the apartment” which is my physical home. To my Bert it is the other place that I look after. It is not ‘home’ because he is not there.

He is correct. Home is where we are together. We went out and had a great time with family and friends. We celebrated his birthday, his day.

My Bert- Happy 89th Birthday August 17, 2021

The Meander: Sometimes home is not where you were born, or where you chose to live, or where circumstances dictate. Sometimes it is simply where the heart is.