Bring Each Other Home: A Caregiver's Journey

Endnotes

Acknowledgements

My heartfelt thanks to all who walked with me during the dark and difficult days of dementia. A special thank you to the members of our immediate and extended families. Your love, wisdom, patience, and support were highly appreciated.

Thank you fellow caregivers for your friendship, sharing, and encouragement to write my story. Thank you for asking me, or giving me permission, to include yours.

The story would not be what it is without the support of friends, pastors, and the amazing staff at the Alzheimer Society and Shalom Manor. Your expertise, kindness, love, and patience were invaluable. Thank you!

Thank you, Pastor Art, John, Donna, Karen, and Bruce, for reading the manuscript and offering kind endorsements.

Thank you, Word Alive Press staff for your expertise in crafting another beautiful book.

Prologue

Fellow caregivers, you asked for a book to give you inspiration and encouragement. We walked together through the puzzling maze of Alzheimer’s/dementia—the disease that plagued our mates. I kept a journal. At the end of ten years I had thirty notebooks filled with my scribbles, my tears, my thanksgivings. It took five more years before I felt strong enough to open those books and garner this story. My prayer is that it, indeed, will be an inspiration and an encouragement.

Joe chose the title for the book; this is how it came about:

Joe has lived at Shalom Manor, a long-term care facility, for several months. He had to be admitted due to his need for fulltime care, but is still well enough for me to take him home for a visit. The idea of writing a book about our journey with Alzheimer’s/dementia has been on my mind, as I keep receiving requests for such a book. I need Joe’s blessing, though, since the story is about him. I’m hoping his mind will be clear—that he’ll understand what I’m asking for.

As I tuck him in for a nap, I tentatively begin, Hon, do you remember how you encouraged me to share my stories dealing with cancer and the loss of a mate?

Yes, he replies. That helped a lot of people.

What about this journey we’re on now, Hon? Do you think it would be good to share some of this?

He shifts his weight, waits a moment, then replies, Yes, I think it would help many people.

I’m grateful he’s with me and readily agrees with the idea. I quickly continue, Some speak of this journey we’re on as ‘the long goodbye.’ Do you think that would be a good title for a book?

No, that’s too depressing.

What would be a good title for our story?

He turns over and I fear I’ve lost him. After a long moment, he turns back to me and says, You should call it ‘Bring Each Other Home.’

My heart warms.

I like that, Hon. It’s much more positive. Were you thinking of the song we used to listen to about loving each other?

Yes.

Stroking his back, I softly sing the refrain of the song Love One Another by Germaine Habjan, which ends with the encouragement to bring each other home.

Part I

Journey Beginnings

Fill your paper with the breathings of your heart.

—William Wordsworth

chapter one

How It All Began

(December 3, 2002)

It is dark. I’m thankful the van’s one headlight spreads enough light for me to safely find my way home from the hospital. Streetlights standing among tall trees, as well as a dusting of snow, help to light my way. The first time I drove down this avenue—Dalhousie Avenue—looking for a house, I was captivated by the stately trees. I found a house then, a small red-brick which I thought was a perfect Grandma house. I continue to drive under the canopy of trees and stop at the house, now a much larger home after some serious renovations, clad in blue siding. A majestic maple stands tall at the sidewalk; its bare branches casts shadows on our white wrap-around porch.

I climb the steps, walk to the front door, open it, and remember how often Joe would whisper, It’s so beautiful, as we’d enter the house. The builder who added the addition did an awesome job joining the new with the old, creating a large two-storey entry with a grand, curved staircase and a skylight. I walk through the hall past the grandfather clock to the dining-room and switch on the chandelier. A glance into the living room catches my breath. Oh, the glass… the table… For a moment I had forgotten—so much has happened…

Sharp shards of glass lie scattered on the wine-coloured oriental rug, as well as on the dark patina of the old hardwood floor. Not sure how to dispose of them, I fetch a large paper bag and pick up fragments of the glass that covered our antique coffee table. I set the bag aside and reach down to fetch the broken table legs, place them on the tabletop, and carefully carry it all down the basement stairs. I place it under Joe’s work bench. Can it be fixed, glued back together? Tears burn as I climb the stairs.

It all began yesterday. I had walked to Paul and Shirley’s for a morning coffee. They’ve been dear friends since my cancer diagnosis several years ago—the same cancer Shirley had beaten. We were sitting around their oak kitchen table when Shirley suddenly stood up and said, Joe needs to come. She walked to their wall phone beside the back door and dialled our number.

Hello, Joe? We would like for you to come for a cup of coffee! Angie is already here. See you soon, OK?

Even though our house is only a few minutes’ drive from Shirley’s, it was twenty minutes before we heard Joe at the door. We found him standing in the cold without a coat on. He looked lost, confused. I saw our white van in the middle of the road bumped up against a jeep, which in turn had hit a black car in front of it.

I hit a car, Joe said sheepishly. I didn’t see it.

Come inside, Hon, you’re cold, I said, pulling him into the house.

Paul and I walked to the van and examined the damage—the crushed right headlight pushed back into the crumpled fender. Two men emerged from a house across the street, surveyed the damage to the rear bumpers of their vehicles, and in unison said, We’re calling the police.

An officer drove up, assessed the situation and said, I’ll have to charge the driver with careless driving.

But the road is icy, I ventured. The van must have skidded, and my husband said he didn’t see the vehicles.

I didn’t see the cars, Joe echoed, now standing beside me.

Sorry, sir, there’s no other charge I can give in this situation.

I took Joe home. He was obviously shaken; he bumped into the door frame.

You’re not well, are you, Hon? I asked.

No, I’m not, he croaked.

Let’s go to Emerge to have you checked, I said gently, expecting him to disagree.

He didn’t resist, and we spent several hours in the Emergency Department of the hospital closest to our home. The attending doctor seemed puzzled after examining Joe. He shook his head, muttered something, and left us alone.

After several hours he returned, examined Joe again, and mumbled, The machine I need is broken. I’m going to give you some blood thinners. Take two tablets now and another one at bedtime. I think you’ll be fine.

Then this morning, while I was working on the computer in our den, I heard a dreadful crash and rushed into the living room to find Joe had fallen across the coffee table. I didn’t see it, he said, trying to get to his feet, holding one of the brass-clawed, mangled table legs. He seemed dazed, bewildered.

You aren’t feeling well, are you? I asked.

No, I’m not, he answered.

I suggested we go to the other hospital in town, the General.

He readily agreed and after an examination, he was admitted immediately. The initial diagnoses: a stroke. I called family and we waited. When a doctor entered, he informed us a blood clot the size of an egg was pressing on the left occipital lobe in Joe’s brain.

An egg? I said, horrified.

Well, you can call it a golf ball if that sounds better, the doctor replied curtly. He explained Joe had had a bleeding stroke (he was sent home with blood thinners!) and the resulting blood clot had now blocked the right half of his vision and caused some paralysis on the right side of his body. As the doctor passed me on his way out, he said, Not many patients survive this kind of stroke.

After tucking Joe into his hospital bed, I kissed him goodnight and drove home, trying to digest this huge chunk of disturbing information.

Now, after cleaning up the broken glass and table, I settle in Joe’s chair. How can I process all that has happened today? Words slowly come to mind—a poem I wrote a decade ago. Shattered Dreams. Tears burn. Is our happy nine-year marriage now shattered? What lies ahead? ­

Six days later, just before Joe is discharged, another CT scan is done. The doctor sits with us and explains the blood clot has begun to dissolve and some of the right vision has already returned. I believe the clot will completely dissolve, Joe’s vision will be restored, and the slight paralysis on his right side will improve, he reassures us.

We’re delighted, although I sense Joe is not absorbing all the information.

We drive home. Oh, it’s so good to be home, Joe exclaims as he settles into his chair with a deep sigh.

The doorbell rings and we’re happy to see someone has come to visit. But it’s disconcerting to realize this person is visibly distraught. He seems to question the diagnosis, the neurologist’s expertise… His words are upsetting. When he leaves, Joe leans his head against the doorframe and tears run down his cheeks. I gently lead him back to his chair.

The doctor said the clot is already dissolving and you’ll regain your sight, I say, stroking his shoulders. We’ll just believe that. OK?

OK, he mumbles as he sits down.

The doorbell rings again. Don’t answer it, Joe says.

It rings again… and again.

I have to go and see who it is, I whisper.

Nervously I open the door and see a nephew and his wife and gladly invite them in. They tell me, We were leaving our evening service and simultaneously said, ‘We have to go see Uncle Joe.’

The nephew settles on the end of the couch next to Joe’s chair, reaches for Joe’s hand and gently says, We’re so sorry to hear what happened to you, Uncle Joe. After a moment he continues, Has anyone prayed with you today?

Joe shakes his head. Still holding Joe’s hand, the nephew lifts us up to the throne of Grace.

And I am grateful for God’s perfect timing.

Joe makes the best coffee, and has taken it upon himself to brew our mid-morning batch. This morning he stands at the kitchen counter with a pencil in hand. He lifts the coffee pot lid, drops the pencil in, stands staring at it. I move beside him, take the pencil out.

Look, Joe—the coffee goes in here.

"Yes, right.

He spoons coffee grounds on the filter. Remaining motionless at the counter, he turns to me.

I don’t know what to do next. His blue eyes fill with panic.

The water, I reply.

He holds the coffee pot under the tap, fills it, stands holding it.

I don’t know where it goes, he whispers hoarsely.

I move back beside him. It goes in here. I say it very gently, forcing tears not to emerge.

Yes, right.

I press the on button and the coffee brews, its enticing aroma filling our sunny kitchen.

Joe sits down and says, There! I did it!

Tomorrow it will be easier, I say.

It’s as if I have to learn things all over again.

But you can.

We glance at each other. He’s the same Joe to me. The same kind Joe whose blue eyes now fill with tears.

Can I share with you what I read yesterday? I ask.

Yes, please, he says.

We talk about the belt of truth—the new truths about our situation. We talk about choosing to travel the high road.

"There’s a poem about travelling the high road in Streams in the Desert. I stuck a copy on the fridge, remember?"

I move to the refrigerator and read:

I’m going by the upper road, for that still holds the sun.

I’m climbing through night’s pastures, where starry rivers run.

If you should think to seek me in my old dark abode,

You’ll find this writing on the door: He’s on the upper road.¹

Joe takes in the beautiful words and his eyes fill with tears again.

That’s how we’ll travel, I say. On the upper road in the light of the sun.

I love you, he whispers.

He moves to the counter and pours us each a cup of coffee. He makes the best coffee.

A few days later, we need to look after some bills. Joe took the responsibility of paying household bills when we were first married, much to my delight. Everything was done on the computer and everything was secured by passwords—a different password for each account, and they couldn’t be written down anywhere. We have to protect ourselves, was his standard reply.

I settle at his desk in the kitchen, turn the computer on. What’s the password for the bank, Joe?

I told you what it is.

That was years ago, Hon; I don’t remember.

Neither do I. He turns and walks to the living room.

For the rest of the day I play with possible combinations of letters from our names and the word flower. I remember the mystery word contains parts of these three words. Finally I happen upon the correct configuration and we both rejoice.

There’s a telephone call from Joe’s niece, Jannie. She and her husband Garry live across the street, and they’d like to drop in for a visit. We’re delighted, as always, and spend some