Paula - Meanderings

New Routine

After my Bert’s second bout of pneumonia a new greeting routine emerged. I had told a few people about how ill he was and all sympathized and asked me to greet my Bert with a hello, a hug and good wishes from them. I did.

As he recovered and I still got the greetings I would lean over and give him a kiss as I called the name of the person who sent the good wishes. He liked that though I am rather non-plussed at figuring out what he’s feeling as he gets those little pecks through a mask. I noticed too, that as soon as I entered he would lift his head, lips already pursed for the little kisses.

Thus was born the new routine. Now each day the first activity, whether he is my Bert or Alzheimer Bert, is to give him a little peck and call the name of the person who sent him the kiss, or hug, or greeting. Dear friends, you do not know this but if you should suddenly have ringing ears and you wonder who is calling your name, it could be me.

I usually begin with the usual suspects who send a daily greeting- family, close friends and neighbours, but I am the author of my own troubles as I decided he would get ten per day. I pluck names out of the air from among our many friends and although he will not remember the names from one day to the next, I will. For variety I call random names to go with each kiss.

My Bert loves this new routine. The last kiss is always from me after which he will ask: “Do I know them?”

“Of course you do. If they came in right now you would recognize them. They are our friends.” He gives a nod of satisfaction and smiles. Ah! the glory of therapeutic lying! It is one of the best tools in a caregiver’s tool box.

The new routine has also honed a hithertofore unknown talent of kissing through a mask. I notice that I am not the only caregiver that has now perfected this new talent. I can hardly suppress the giggles as these masked little kisses occur all around. What a talent.

Next is talking but only if my Bert wants to talk. If the day is a my Bert day then the conversation is happy, quite fast, certainly rambling and full of laughter. If it is an Alzheimer Bert day there may be silence, a nap, or awake with eyes closed but always holding hands.

It is then time to prepare for lunch or dinner depending on which meal I choose to lend a hand. First the garment protector aka the bib is put on. His drinks arrive first. There is milk, juice and water followed by soup at lunch, then the entrée consisting of protein, carbohydrate, vegetables and dessert.

It is no longer the new routine. My Bert has a good appetite and will rouse himself to have his meal. Although he can feed himself he will not do so when I am there. He drinks by himself but I must feed him the soup, entrée and dessert. We have that down to a fine art and it doesn’t matter if he’s animated or not.

There is one consistent action. After his meal whether it is my Bert or Alzheimer Bert he will usually doze off with a smile on his face, hands lightly clasped on his stomach. He’s content. I cannot ask for anything more.

I will not ask for anything more. I just want so much more. As I watch him doze I’ll recall that well know short version of the Serenity Prayer:

“God grant me the serenity

to accept the things I cannot change:

Courage to change the things I can;

And wisdom to know the difference.”

The Meander: I pray for wisdom but nefarious, insidious, devastating Alzheimer’s is wickedly wiser. The things I can change are becoming less and less each day so courage is on life support but acceptance is big and bold and serenely beautiful.

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.

Life Sentence

Six to twenty years plus. This sounds like a prison sentence for a very serious crime. It is, although no crime has been committed. Yet that is the sentence handed down to every prospective caregiver of a loved one diagnosed with Alzheimer disease.

I heard it. It is a terrible verdict but unlike others this one is indisputable. There is no avenue for appeal.

My Bert Has Alzheimer’s: Caregiving is Living for Two charts ten years into that sentence. I have not marked off the years. There is no lumberman’s tally of the hours, days, or months. That is futile, but on the publication of this memoir it suddenly dawned on me that I may be only at the half way mark of that cruel and unusual punishment.

There is another part to this sentence besides its length. It should also include ‘at hard labour.’ Being a caregiver to a loved one with dementia is the definition of hard labour. One chapter with the heading Caregiver Job Description is a testament to that fact. Yet with all its details and list of requirements it is still only a glimpse into the convoluted life of a caregiver.

It is a chapter that resonates with readers whether they are caregivers or not. Caregivers of all stripes will remark on how true it is and add their own similar stories and experiences, while others will say: “I don’t know how you do it.”

Another unique facet of this sentence is that the diagnosis is for at least two people. The disease is for one but the following life of dealing with the manifestations and trajectory of the disease is for both parties. In fact a diagnosis of Alzheimer’s may be more devastating to the caregiver than to the patient.

Gasp! How can you say that?

It is easy for me to arrive at that conclusion. I am living it. My Bert is content. He has no idea what stress is now. His blood pressure readings are fantastic. In fact I know that almost everyone with this disease at this stage, has a fantastic reading unless there is an underlying problem that raises blood pressure.

Whenever my Bert has a reading I will tell him that he has the blood pressure of a teenager, and he, being the character he is, will respond saying: “Of course, I’m a teenager” or: “I’m only 19!” At least that’s what he used to say. Now he smiles and nods.

So as the caregiver I take delight in his contentment though I rail at the narrowness of his existence. But that is my worry, not his. There’s always a smile when he sees me whether he knows our relationship or not. Perhaps he has forgotten my name but he has not forgotten ME.

At times when I feel as if I am swimming in a sea of despair I also know I feel the despair because I am alive. I pause and breathe. I breathe and breathe in life.

The Meander: I hope I do not fall into the estimated 30% of caregivers who die before their loved one. The sentence continues but so does the adventure as our story continues and I have to live for two.

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.

A Red-letter Week

Most people have a red-letter day when something extraordinarily good happens. I had a red-letter week.

First is the confirmation that I am a 2022 Honouree:

http://100abcwomen.ca

100 Accomplished Black Canadian Women

I am honoured and humbled to be among this class of distinguished women. I thought things could not get any better. Then this equally exciting news:

My book: My Bert Has Alzheimer’s: Caregiving is Living for Two is published.

You may view details at: https://books.friesenpress.com/store/title/119734000213242990

Ever since the diagnosis of Alzheimer’s I have immersed myself in learning about dementia and the marvellous mysteries of the brain. They are both fascinating and complex.

What is the use of learning without sharing? The more I learnt the more I wanted to share. It became more urgent as I realized that much of what I was learning in the hands-on practical theatre of caring for a person with dementia came from people like me. They opened their hearts and minds and wrote down their own experiences and in so doing helped me to develop best caring practices for both my Bert and for me.

The disease is as individual as each person that contracts it. Just as no two people are carbon copies of each other, so too the disease chameleon-like manifests itself differently and uniquely in each individual.

My hope is that anyone reading this slice of life of my Bert and me will find information, support, and guidance whether they are in a caregiving situation or not. Alzheimer’s is here to stay. It is the most prevalent form of dementia.. I wish I had been more informed before I was ambushed by the diagnosis.

Worldwide distribution should happen in approximately four weeks. In addition to FriesenPress Bookstore it will be available at Amazon; Barnes and Noble; and in eBook format on Kindle (Amazon); Google Books, iTunes Bookstore. You may also check in at your local bookstore and your local library.

The Meander: To share is to care.

Requiem 2022-01-17 (For Bob)

My friend died today.

Did he know

That he had friends

That he died

That it happened today?

What is today when time has lost its meaning?

It seems the slow death has won

But only for today.

The peaceful visage

His best look in months

Spelt release, relief, respite.

He could not say goodbye

He did not say farewell

He forgot.

He just left

Going in Peace and quiet

As his soul melded with the dawn.

With sense of humour intact

He flipped therapeutic lying with a silent

“See you later.”

He of the melodious voice

Now sings in the angelic choir.

“Rest in Peace”, friend.

“See you later.”

The Meander:

Deja Vu All Over Again

At the beginning of each New Year there is that chore that is immediate and necessary. It is to transfer vital information from the past year to the coming year.

That includes birthdays, phone numbers and new information learned that must find a place in the current year. Most important are the new people met who have already become important in my life. These are the keepers that give continuity to the year that now dawns.

January 1, 2022 I wrote in my new desk calendar:

“Oh, how I wish this is a better year than 2021!” I then went to January 1, 2021 to begin the transfers and burst out laughing when I read:

“I hope this year will be better than 2020!”

Into my head popped the Yogi-ism: “It’s like déjà vu all over again.” I thought Yogi Berra, the New York Yankee Hall of Famer certainly had the most appropriate expression for my own déjà vu as recorded in the desk calendars.

Did anyone think the world would be in an even more devastating grip of the latest variant of the Covid-19 virus, Omicron? Its vice-like hold is pushing us backwards to 2020, spreading with lightning speed and accompanied by new restrictions, depressive news, mental anguish, isolation, frustration, and fear for loved ones.

Yet there is hope. Happy New Year! is the usual greeting. The many beautiful holiday wishes have not yet faded. There is less fear though the immediate question following the cheerful greeting is: “Have you got your booster shot as yet?” Last year the question was: “Are you fully vaccinated?”

And there are moments of gratitude too. A friend was able to do her philanthropic visit to her project in Malawi in between a brief travel advisory hiatus and more travel bans. Our little family was able to be together for a time on Christmas Day as we are essential caregivers to Dad. A very special group of friends gathered to share lunch in Niagara-on-the-Lake. As even more restrictions are announced that limits indoor gatherings to five people another friend said: “Thank goodness our tiny bubble is three people and we are all triple vaccinated so we can still have tea or dinner at home with one another.”

Our family has been to Greece. We love that country very much but we are all somewhat bemused that we are learning the Greek alphabet, in Canada, through the spreading of a virus. Somehow the naming of hurricanes with Greek names does not have the same impact. Perhaps we prefer whole names to single letters and live in hope that this virus is not the omega of our existence.

Yes, 2022 may seem like déjà vu of 2021 but it’s not entirely so. There are significant differences. We are resilient. We have vaccines and soon virus fighting pills. The arsenal grows as we learn more and more about it. We have not given up and we won’t.

The Meander: Covid-19 is not the omega of our world. Instead it can be the alpha of our new beginnings, new visions, and the harbinger of a new normal that is being created even as we try to figure out what that will be. Let’s continue to live in Hope.

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.