Dancing With Dementia: Recognizing and Coping With the Early Stages of Dementia

By Jemi Fraser

Dementia and Alzheimer's touch the lives of millions around the world, but so much is still unknown.

 

As first-generation Canadians, we didn't recognize the early warning signs. We didn't know the differences between regular aging and the early stages of dementia. We've made mistakes but we've learned a lot.

 

DANCING WITH DEMENTIA will help you:

• Identify those early warning signs

• Use visuals to improve communication

• Choose your words wisely

• Redirect and reassure

• Stay calm and cope with your own emotions

• Consider nursing home options

• Improve caregiver self-care

 

We've learned to dance the early steps of the disease with our love and laughter intact. If you are looking for help recognizing early signposts along with practical ways to cope with early Dementia and Alzheimer's, this book is for you.

• Language: English
• Publisher: Jemi Fraser
• Release date: Mar 31, 2020
• ISBN: 9781999125820

Jemi Fraser

Jemi Fraser writes romantic suspense filled with hope, heart, and humour. Her stories combine her love of mystery with the satisfaction of a Happy Ever After. Love is always worth the risk. Jemi also writes about the way dementia has impacted her family. Love and humour go a long way to help everyone cope with the disease. When she was four, Jemi threw an epic temper tantrum because she wanted her very own library card. It worked and Jemi’s been a bookworm ever since. Before turning her hand to writing, Jemi spent a few decades teaching students to love each other, words and math. Yes, math! Armed with a mug of tea and freshly-baked cookies, Jemi is living out her own HEA in beautiful Northern Ontario.

Book preview

I. Welcome To The Family

For all We Know

Dementia is not a pretty companion.

It’s sneaky. It creeps up quietly and much more quickly than you’d ever expect.

Two years ago, we might have said our mom’s memory was showing a few signs of aging.

Eighteen months ago, we spoke to a medical professional who assured us we had ten years to go before we needed to worry about dementia.

A mere six months later, Mom was declared incompetent. Unable to make her own decisions regarding her health, safety, or finances.

Fast.

Really, really fast.

In our experience, trauma can accelerate dementia. Inability to face or cope with trauma can make it worse.

Our experiences with dementia have taught us a lot. We’ve stumbled across ideas that have helped make everyone’s lives a little easier. By sharing our journey and our lessons learned, we hope to make your journey a little easier as well.

This book is divided into chapters, with the first part taking you through our journey. The last section collects all of the tips and lessons learned from throughout the book and compiles them into handy lists for you to access.

None of us are medical professionals, and we don’t claim to have any medical answers.

What we do have is practical experiences and observations. While each person is affected by dementia in a unique way, we’ve found some techniques and ideas that appear to work in a wide variety of situations.

As both a classroom and Special Education teacher, I’ve worked with students who deal with emotional and behavioural issues as well as a wide variety of diagnoses. Many of the techniques I’ve learned over the years have helped us make life easier and more pleasant for Mom as she deals with this disease.

We hope you enjoy our journey and learn some steps that will keep you dancing through the confusing maze of dementia.

Getting To Know You

Mom is going to be the star of our story and in order to provide some context, it’s best to start with a quick history lesson on mom’s life.

Our mom has always been a fascinating lady. Bright, fun, adventurous, with a glimmer of devilment sparkling in her eyes. Mom grew up in a not-quite-on-the-right-side-of-the-tracks neighbourhood of a large Scottish city during World War II. She learned to be quick with both her tongue and her feet.

Mom’s family lived on the top-floor of a tenement building. The top floor was cheapest as it was the most vulnerable during bombings. The outhouse and courtyard for laundry were shared with other families. As a child, she carried a gas mask to school in case of a bombing and spent a fair amount of time in air raid shelters. Rations determined what was for supper and she didn’t set eyes on a piece of candy until well after the war ended.

Mom’s favourite places growing up were the library and the nearby field of horses. She learned to garden from her dad, learned to sew and play the banjo and mandolin from her mom. She and her brother spent hours listening to music on the radio and fell in love with all things classical, much to the dismay of her mother who preferred jazz and swing.

As a teen, Mom and a friend ran a competition to see if they could get a different boy to walk them home from the local dance bandstand every weekend night for a year. That’s 104 boys. They both won.

Mom’s life wasn’t always easy. Her mom died of cancer when Mom was a teen. Her dad suffered from debilitating rheumatoid arthritis and her older brother suffered from frequent illnesses that kept him out of school and often in the hospital.

At fifteen, Mom finished school and went to work in a lawyer’s office, where she soon reorganized everything to the way she liked things done. After her mom died, she also ran the household, bought groceries daily (no fridge), cooked, cleaned, did laundry (with a wringer and a clothesline), and took care of the money.

She and our dad dated for a while, then Dad emigrated to Canada for work. They saved enough money that Mom soon followed. She hadn’t wanted to leave her dad, but he’d surprised her with savings of his own and sent her on her way.

In her first twenty-four hours in Canada, Mom found a place to stay and a job in another lawyer’s office, which she quickly organized to her liking as well. Once our folks were married and expecting their first child, mom quit the job to stay home and raise the kids.

Only a few years later, Mom’s dad and brother died within days of each other. She was devastated but unable to return home for the funerals. These traumas caused her a lot of stress and caused a few episodes of being lost and disoriented.

One day when I was an infant, Mom went into the bank with my older sister and left me outside, snoozing happily in my buggy. This was back when no one batted an eye at this kind of behaviour. Once she was done the banking, Mom walked the few miles home. Inside the apartment, Mom spotted one of my toys on the floor.

And that’s when she remembered she had a second daughter. The one she’d left outside the bank. They didn’t have a phone, my dad was at work, so she carried my sister back to the bank in a panic. She collapsed in relief when she found the buggy exactly where she left it, with me still sleeping soundly inside.

Another day, a few months after her dad’s and brother’s deaths and more than five years after she’d moved to Northern Ontario, Mom wandered the downtown area with me and my sister in tow, searching for her favourite fish and chips shop. Sadly, there weren’t any fish and chip shops here in Canada.

Years later, once my sister and I had moved out and married, our dad died suddenly, leaving mom on her own and completely out of her element. Mom was now dealing with the bills and the budget, tasks our dad had always done. She’d always hated driving, now she was stuck with an extended cab truck, an RV, and all the driving duties. Then she needed to learn the ropes of selling the truck and RV and buy something more comfortable for her.

It wasn’t until years later that we realized that while Mom said she was coping with all of these things, she wasn’t. She was scrambling but too embarrassed to admit she was lost in many areas of her life. She was proud and determined to do her best on her own.

Several years later, Mom met another man, they fell in love and got married. Her new husband was the polar opposite of our dad in many ways. Dad had been supremely logical. When we got him a library card for a retirement gift, he started at "A" and searched for authors he might like. He’d reached Ludlum shortly before his death.

After he died, back in the late nineties, I cleared out Dad’s computer for Mom. For fun, Dad had created spreadsheets for their budget. He’d compared spending month to month. You want to know how many bananas they bought in August of 1997? No problem. Check the spreadsheet, the comparison month-to-month chart, or the brightly coloured graphs.

Dad was an amateur Mr. Fix-It who renovated a couple of houses along the way.

Mom’s new hubby wouldn’t have known a hammer from a screwdriver, nor a spreadsheet from a blog post. What he did know was music. He was a honky-tonk piano player and a good one. He’d learned to play by ear at an early age and never bothered to learn to read music. There was no need when he could play dozens and dozens of songs in different keys without any hesitation.

With her new hubby, we got to see a different side of Mom blossom. She’s always loved music and loved to dance. It would be generous to say Dad had two left feet, but he’d gone along with Mom to some musical events. Now she had a new partner who enjoyed that part of life as well. They spent a lot of time at places with pianos and with friends who enjoyed the camaraderie of the music as well.

This is where our story begins.

From here on, I’ll identify Mom as Lizzie and her hubby as Philip. These are not their real names, but with the nature of some of the stories, it’s best to protect their privacy.

One day in the Bowels of Hell section of our story, my brother-in-law was picking up Lizzie at her apartment to visit Philip in the hospital. He waited in the car at the edge of the sidewalk leading to the door. He saw Lizzie approach the door as two male teens were entering the apartment building.

This was around the time of Queen Elizabeth’s birthday and there had been a lot of coverage about her on TV. The boys giggled and held the door open for Lizzie with a slight bow. As she walked through the door one of the boys smiled and said, You look just like Queen Elizabeth.

Lizzie flinched at the comment and hurried to the car. My brother-in-law heard the conversation and it was done in a very light-hearted manner, but the encounter unnerved Lizzie. She thought the teens were being mean to her, thought they might have been chasing her, and was afraid to go into the apartment alone for a few days.

This wasn’t the first time someone mentioned that Lizzie resembled Queen Elizabeth, and it wasn’t the first time she’d become offended. They’re about the same height, wear their hair in similar styles, but to Lizzie, the Queen is old. Growing up in Scotland near the Queen’s summer home, Lizzie and her friends had often seen the Queen driving toward Balmoral Castle waving from the car. Because the Queen is about a decade older than her, Lizzie can’t imagine being compared to her.

But, it always makes us smile, so we’ll go with it. As Philip is the real Queen’s husband, we’ve decided our Lizzie’s husband will be Philip as well.

The book will mostly focus on the past year or two of our lives with some mentions of earlier times. In hindsight, signs of Philip’s dementia were visible far earlier than Lizzie’s.

There are several reasons that we missed many of the early signs of dementia in both Lizzie and Philip.

We rarely spoke to Philip on the phone and when we were in groups of more than three or four, Philip tended to be very quiet. He had some difficulties hearing in a group, which isn’t uncommon as people age.

Philip wasn’t used to big family gatherings and I think we often overwhelmed him with our get-togethers. Even in smaller groups, Philip was quiet and content to listen to the conversations around him rather than contribute.

My sister and I are first-generation Canadians. We didn’t grow up surrounded by family. We’d never experienced the aging process up close. We exchanged letters back and forth with our grandparents, but that’s very different from spending time with them. Sis and I didn’t watch them grow old. We didn’t see the subtle changes. We didn’t know what was considered normal and what was unusual.

As kids, Lizzie was taught that doctors were busy people. They had serious illnesses and diseases to treat. People had returned from war with horrific emotional and physical traumas.

Childhood illnesses weren’t brushed off, but they weren’t cause for concern either. Families learned to check with the doctors only in emergency situations. Without regular checkups from a doctor, we had even less idea what to look for.

Lizzie is also independent and private.

Perhaps most importantly, dementia is sneaky. There are many forms of dementia, and they all manifest differently. Even within a type, symptoms vary from person to person.

In summary, we missed a lot of clues. We brushed off a lot of incidents as, Oh, it’s just Mom being Mom. We respected her privacy. We didn’t push our help.

We were wrong.

We hope that some of our experiences and lessons learned will help you and your families as you take those early steps in the dance of dementia.

II. Early Warning Signs - Most Of Which We Missed

Looking back with our oh-so-wise hindsight glasses on, it’s a little difficult to believe we didn’t recognize these early warning signs for what they were. But, dementia doesn’t come with bright neon lights and arrows pointing it out. Dementia also isn’t a straight decline. There are startling moments of clarity mixed with astounding moments of confusion. It’s easier to believe that the confused moments are the anomalies.

Drive Me Crazy

Some of the strongest early warning signs that we missed involved cars: driving, parking, buying, unlocking. Lizzie. Philip. All kinds of signs.

Too bad we didn’t put them together earlier.

❖

ON THE ROAD AGAIN

Most people I know cherish their independence. We want to be self-sufficient. We really hate being told we’re not capable of doing something, especially if it’s something we’ve been doing successfully for years.

Driving is one of those things. If you want someone to get really angry with you, question their driving ability.

It took many years for Lizzie to get her license. At first, she was content to have Dad drive, then as we got older, she wanted to drive as well. There are some fantastic stories about her learning to drive, but that’s a different book. When my dad retired, he took over most of the driving again, but once he died, Lizzie reluctantly got back in the car. She continued to be a nervous driver. Storms, heavy rain, winter, hills, highways, tight quarters all caused her stress.

Once she and Philip got married, she happily relinquished the steering wheel to him. Much better to let Philip take the wheel. After all, he’d been a bus driver you know.

This is a refrain we heard again and again and again. Neither Lizzie nor Philip could see—or wanted to see—Philip’s deteriorating skills. If he’d driven bus for a couple of decades without a single accident, then he was a good driver. Period. Even if he’d been retired for almost two decades. Even when the evidence proved the exact opposite.

❖

To Buy Or Not To Buy, That Is The Question

Philip wanted to trade in his car for a newer model. For decades, he’d been leasing a car, then moving up to a newer model when the lease was up. That way he didn’t have to worry about much maintenance or the car breaking down. As Philip didn’t have any mechanical aspirations or talents, this was a good plan.

Philip and Lizzie went down to the car lot and looked around. They found the car they liked and went in to speak with the salesperson. The salesperson asked Philip if he wanted to lease or buy. Philip said he wanted to lease like he always did and always had. He wasn’t the kind of person to own a car, he was a life-long leaser.

The salesperson was a bit confused and checked his files. Again.

Philip had bought his current car, not leased. When he was told this, Philip became upset with the salesperson. He’d told him he always bought cars and never leased them why couldn’t the salesperson understand? So Philip bought this car because he wanted to do what he had always done.

❖

Look Out Below!

One winter day, Lizzie was driving and Philip was in the car. With the snowy, blowy conditions that day, we’re not sure why she was driving. Philip couldn’t tell us and Lizzie rarely answers a direct question she doesn’t like the answer to, so we never did find out.

There’s a steep hill near their apartment, but Philip told Lizzie the conditions were fine and she should take that hill down to their apartment rather than going to a hill with an easier grade slightly farther away. Lizzie trusted Philip’s judgment completely, so down they went.

To reach their apartment, they needed to take a sharp right turn near the bottom of the hill. On this day, there was a car at the stop sign at the crossroad, waiting to turn right and continue down the hill.

As you’ve probably guessed, the hill was slippery, and despite her best intentions, Lizzie wasn’t able to complete the turn and she slid into the other car. Luckily no one was hurt, and there was minimal damage.

Lizzie blamed Philip for the accident, and she truly believed it was his fault.

Not her fault.

Not an accident caused by slippery driving conditions.

Not bad luck.

It was Philip’s fault.

Completely and totally Philip’s fault.

Why?

Because, when she felt the car start to slide out of her control, she asked Philip what she should do.

He didn’t answer her quickly enough.

When he did answer, he told her to turn the corner, which she was already trying to do.

When the car continued on its way, she yelled at Philip for help, but there was nothing he could do, nothing she could do either.

Whenever she speaks about the accident, she says, Philip’s accident.

❖

Drive My Car

In their brand new car, Lizzie and Philip showed up at our house one clear, summer day. At first, Philip stopped the car on the street, and Lizzie ran in to see if we were home. When we were, she waved Philip into the driveway.

He pulled in and drove up to the house.

Right up to the house.

Almost into the house.

He parked with the right side of the car less than eight centimetres (three inches) from the wall. The passenger door couldn’t possibly open.

My husband was working in the garage, but he spotted the car on his way inside. Biting his tongue, he came inside and asked for Philip’s keys. Philip never questioned him and simply handed them over. My husband went out, pulled out the car, and backed it in so they wouldn’t have to back out of the driveway. When they left, neither Lizzie nor Philip realized hubby had moved the car at all.

We suggested they park on the road for future visits.

❖

Stormy Weather

One winter day, well over thirty centimetres (a foot) of snow fell, high winds whipped it around, and the temperature rested at icicle-in-the-beard levels. It was one of those days when the police suggested people stay off the roads unless they absolutely had to go out.

Of course, none of that kept Lizzie and Philip inside. Nope. They had an appointment. Well, the actual appointment was the following day, but they thought they had an appointment.

Philip managed to drive them up the hill to the doctor’s building and find out there wasn’t an appointment. They went for a tea at a nearby coffee shop and then headed back to the apartment. Philip chose to go down a steep hill and then use the narrow side roads to get home. Not a good choice.

In our area, we have lots of snow and the city crews are terrific at keeping the roads as clear as possible. They focus on the main streets during the day, and do the side streets at night when there is less traffic and cars are not allowed to park on the street.

As Philip tried to navigate the narrow, twisting roads in the swirling snow, he ended up stuck in the snowbank.

Philip tried to rock the car, reverse the car, gun the engine. Nothing. They were well and truly stuck. As they had no cell phone, they decided the best choice was for Lizzie to walk home to use a phone and call for help. This was a good twenty minute walk. In the blizzard.

Once she arrived at the apartment, Lizzie called me and asked if my husband could go down and help get Philip out of the snowbank. I explained he wasn’t home from work yet, but we’d head down as soon as he was, which would be in about thirty minutes. I said it was too dangerous to take my little car down to reassure Philip, but that we’d head down in the truck as soon as we could.

When I asked why Philip hadn’t headed home with her, Lizzie replied that he hadn’t wanted to leave the car. She said they had lots of gas so he would be able to keep the car running while he waited.

When I asked exactly where Philip and the car were stuck, Lizzie replied, On that road off the hill road.

Right. There are several hill roads, at least four near her apartment. Lizzie wasn’t able to tell me the street name or which hill. Nor could she tell me left, right, north, south.

After a lot of questions, I hoped I had the correct area. I told Lizzie to hang tight, make tea and that I would call her when we were on the way.

When my husband came home, he, my son, and I hopped into the truck and headed down to search. I called Lizzie to let her know we were on the way.

Of course, there was no answer. We were left to wonder if she’d gone back to the car or if she was watching from another window in the building to see if we were coming.

The roads were terrible, even for Northern Ontario in a blizzard. Lots of snow, many cars unable to get up the hills, strong winds made visibility next to zero.

After a few turns through the narrow streets, we spotted Philip. He was definitely stuck.

Philip’s car was parallel to the road. On the left hand side of the road. With a full third of the car in the bank. A full third.

Completely parallel to the road.

He couldn’t open his door because the snow bank was right there, smashed up against his door. The bank was slightly taller than the side mirror on the car. Here was the real explanation as to why Philip hadn’t walked home with Lizzie.

The left headlight and tail light were both in the snow bank. The tires we could see were buried up to the hub cap. Philip had to have been gunning the engine almost the entire time he’d been there, which had probably been close to an hour.

It was like a giant hand had picked up the car, lifted it sideways and dropped it straight down.

When I knocked and then opened the car door to speak with him, Philip jumped and nearly wept with relief. He was embarrassed, shaken, and more than a little scared.

At least he’d had enough gas to keep the car running, so he was warm. I’d brought a thermos of tea with me, but he didn’t want it. I told him the guys would get him out, then my son or I would drive him home so he could relax. I didn’t tell him we couldn’t contact Lizzie.

During his wait, several people had stopped and tried to help Philip, but he was well and truly stuck. Three men working together hadn’t been able to free the little car.

Hubby and son pulled out a tow rope and hooked it up to Philip’s car. With a little bit of finagling, hubby pulled the car out with the truck. As he moved to unhook the rope, my son and I started toward the car, intending to drive Philip the rest of the way home because he was in no shape to drive.

Without a glance in our direction, Philip stepped on the gas, leaving son and I standing on the road, and hubby by the truck, watching him go. We were speechless.

Shaking our heads, we hopped in the truck and followed. Around a couple of corners, we had to stop behind a line up of cars. Three cars in front, Philip had stopped in the middle of the road, blocking both lanes of traffic.

The driver’s door was open and Philip was out in front of the car, trying to get the snow off the wipers.

I jumped out to go help, but before I could get there, Philip got back in the car, and headed for the