Guilty or Not

When We Do This Hard Thing

Guilty or Not

In the last two weeks, I have spoken with two women who recently placed their husbands in long term care facilities, and a grieving widower whose wife died about a year ago, also in residential care. Breaking voices tell me about their sorrow but, when they speak about the guilt they are experiencing, I hear a deeper agony in their hesitant words and I grieve for them and myself. I understand their guilt, as I am sure they would have understood mine, had we known each other at that time.

ApriI 2011

I don’t want him to go in to see the doctor with me. He would join me in a heartbeat if I asked, but I don’t ask. I think I will manage my feelings better if he isn’t there, and I need to be able to listen to what the doctor tells me. My husband Lincoln is the love of my life. I know that’s a cliché, but he is. We’ve been together over 31 years. This diagnosis will change everything.

The neurologist is calm and matter of fact, as he delivers the news.

There’s nothing else that it can be. You have Parkinson’s disease.

Parkinson’s disease.

Even though I knew this was coming, I feel his words as a blow to the heart, a verbal assault. My eyes fill up with tears.

I’m not surprised, I whisper.

Then why are you crying? he asks me. He is genuinely puzzled.

I am a little stunned and wonder if he skipped class on the day they were teaching medical students how to deliver bad news to patients.

I sob in our car as I tell Lincon what I just have learned from the neurologist. He shakes his head when I tell him about the “why are you crying?” question.

Lincoln’s sister died recently of complications of young onset Parkinson’s. It hurt beyond words to watch her lose capacity, to see her face grow unresponsive, her voice reduced to a whisper, her body painfully rigid and twisting.

We think we know how this will end. We don’t.

Just months later, my husband is assessed for symptoms of dementia. He has been demonstrating mild but clear indications of cognitive decline for over a year. Our friends express concern. I make excuses.

He’s older than any of us, I say. He’s deaf in in one ear and has compromised hearing in the other.

Denial. Such a wonderful thing! Until it isn’t.

It has taken me a long year to convince him to see a doctor. Both our fathers died of complications of Alzheimer’s disease. He isn’t in denial; he doesn’t think there is help for what he has. We speak often about the irony in our “his and hers” neurodegenerative diseases. He joins me for daily yoga practice, after I read an article that suggests it may help slow the rate of progression. Coconut oil and medium chain fatty acids hit even the mainstream news as possible cures for neurological disorders. We start eating tablespoons of coconut oil several times a day. I suggest we call ourselves “shake and baked.” That makes us both laugh.

Lincoln’s score on the screening test is low, even lower than I thought it would be. Our family doctor cannot hide his surprise when the nurse who administered the test, hands him the results.

Dementia, he says. Probably Alzheimer’s. I’m sorry.

We think we know how this will end. We don’t.

I live in a state of permanent anxiety.

How will I find the strength to walk this road again?

How will I manage his disease and my own?

How will Lincoln cope with the loss of his wonderful physical and mental strength and agility?

How will I keep him safe?

Is he going to be angry?

Is he going to be depressed?

How will he know I love him?

We don’t know that Lincoln’s brand of dementia, Lewy Body dementia, progresses very quickly in some patients, or that, in the early stages, it causes hallucinations and a bizarre symptom, known as “Capgrass Syndrome”. If had to do it all over again, I would push harder to get a definitive diagnosis earlier. There are many different kinds of dementias, well over fifty, but only 4 account for 90 % of cases. Alzheimer’s is just one kind, the one everyone seems to know. The other three main players are vascular dementia, frontal-temporal dementia and Lewy Body dementia. LBD is second most prevalent and is becoming part of more caregivers’ vocabulary. That matters because the medications most commonly prescribed for Alzheimer’s are contraindicated for Lewy Body dementia. The symptoms of early stage Lewy Body can be quite bizarre.

Wikipedia :Capgras delusion or Capgras syndrome is a psychiatric disorder in which a person holds a delusion that a friend, spouse, parent, another close family member, or pet has been replaced by an identical impostor. It is named after Joseph Capgras (1873–1950), the French psychiatrist who first described the disorder.

January 2013

Who’s that kid? Lincoln asks me.

What kid, honey?

That one, there! he says and he points to an empty chair in the corner of the living room.

She follows me around!

He is half laughing, half frustrated.

Is she bothering you? I ask.

Not really, he says then, after a pause,he asks, Do you know where my wife is?

The hallucinations, one of the hallmark symptoms of LBD, are mostly benign– manifesting as children and small animals that appear and disappear at random. Occasionally there are too many children and that upsets him. I use my teacher voice.

It’s time for you to go home, I announce.

The next step is to distract him; sometimes that backfires. I clear the kids out of the shed and they follow us on our walk.

Same kids? I ask.

Maybe, he says. I don’t know. Not sure

Honey, I say, I think they like to be around you, that’s all.

He mumbles something under his breath.

I can use my angry teacher voice if you’d like. That’ll clear them out!

No! he says. They’re not hurting anything.

He hated it when I raised my voice with our own two girls. He was a gentle soul. In the classroom and in his library, he was a “safe-haven” teacher, creating space and support for students who needed a calm place and a supportive adult to help them through a rough patch.

Early on a winter morning, he finds the keys to our uninsured VW Westphalia camper, keys I thought were well hidden. He drives 8 kilometres on summer tires, up a winding rural highway, to reach the home of our closest friends.

There is a strange woman in our bed, he tells them. I can’t find Leslie!

I didn’t hear him get up or get dressed. I was in deep sleep, exhausted by the restless nights and constant hyper-vigilance. As well, severe fatigue is one of the many gifts-I-could-do-without of Parkinson’s disease.

A day later, on a bitterly cold night, he flees our local movie theatre —in order to search for me—while I frantically try to convince him that I am not an imposter. A tall, strong friend holds him in his arms until an ambulance arrives. An ambulance and a police car. In our small town’s hospital ER , the doctor, a friend of ours, a gentle, soft-spoken man, asks Lincoln what has brought him to the hospital. Lincoln tells him a garbled version of events. A strange woman was “right up in his face” and he worries that she has done something to me.

Why did you finally agree to get in the ambulance? the doctor asks.

Did you see the size of that cop?

The doctor chuckles a little. I don’t know whether to laugh or cry.

I don’t anticipate how much the stress of caregiving, and the unrelenting burden of care, will accelerate the progression of my Parkinson’s but, by the summer of 2013, I am unhappily making plans for my husband, my wild and lovely mountain man, to be moved from our home to a local long term care facility.

So, you see, I know what those shattered women and that distraught man are feeling because I was broken, for a long time, by the same guilt.

When we do what we have done, sending those we love away from everything they know, at a time in their lives when they cannot understand anything but that they are being abandoned, our rational brains tell us that we have no choice and, truly, we don’t. We don’t. Our brains, our thoughts, riven by deep grooves worn by grief, become an invitation to the goblins of guilt and regret . They will move in and stay forever if we let them. They will bring their capability of doing more damage than even the sorrow. The good people I spoke with, have just gone through so much, and now must find a way to deal with these very complicated emotions… that they don’t deserve… but can’t escape.

Winter 2014 to Summer 2017

For the next two years and 10 months, I go every day, twice a day, to his care facility. I spend two to 3 three hours with him at each visit. I take him for long walks through the quiet subdivision where the care centre is located. I play the music of our generation and coax him to his feet to dance with me in his room. We sway and shuffle to early Beatles, Elton John, the Mamas and the Papas, Joan Baez, Joni Mitchell and Gracie Slick.

I sit beside him, hold his hand and read while he drifts in and out of sleep. I feed him his lunch and dinner.

Well, let’s see, I say. Yum! We’ve got green blob this and white blob that, I tell him as I spoon puréed muck into his mouth,.

I follow it up with fresh fruit, applesauce, or slices of fruit pie I’ve made at home, late at night or in the early morning.

The care facility acquires an amazing tricycle. It has a wheelchair mounted on the front and is battery-assisted. I practise until I feel skilled enough and I test drive it by taking wonderful Andrew, the head of the recreation team, for a ride. He is a foot taller than Lincoln and twice his weight. I handle the trike well enough. We transfer Lincoln from his wheelchair to the one on the front of the trike.

I pedal. He whoops and hollers as we sail around the hospital parking lot and he laughs his way through our first ride together while I weep for the sheer happiness of this moment. This joyous ease of movement.

This is grace. We are touched by grace

When we go inside for lunch after this first tricycle adventure, he picks up the spoon and feeds himself. He hasn’t fed himself in months and months. This happens time and time again, after we’ve gone for a pedal. Fresh air, sun, wind, speed, and a little risk bring such joy to this sweet, frail old man. And that joy translates into floods of adrenaline and rushes of endorphins that, for a few magical moments, repair some of the damaged circuitry in his brain.

I do this for him, I do all this for him, but still I feel so guilty every time I say goodbye. I can’t get past the memory of the first day I left him in care.

Did I do something wrong? he asks me, his face a mask of desolation and betrayal. The hurt in his eyes haunts me still.

Nobody wants me.

I want you, I stammer, I just can’t …

I say goodbye and walk to my car. I sit behind the wheel but I can’t drive. I am crying too hard. It will be weeks before I can get in the car and drive home without having to wait for the tears to subside.

Cynthia, the very kind psych nurse who is the patient care coordinator, meets me at the door one day, as I am leaving . She walks with me to my car, hands me a tissue to mop up my tears before speaking. I think I am expressing the sense of what she wanted to tell me. I’ve visited and revisited this memory many times. The following is a close to what she had to say as I can remember…

Leslie, I’m going to tell you something that will probably make you angry but I think it might bring you comfort in the long-term. You’re breaking all our hearts, so please listen with an open mind.

I want you to know, she begins, we all love Lincoln and we all love you. This is his path now. You have to accept he walks alone. You can’t do this for him, or even with him. You cannot take away his struggle.

He is a very loved man who has lived a better life than most. The staff who know him, tell me Lincoln stories and they hold him in awe. Rattlesnakes, sky diving, mountain biking…any one of the things he loved to do involved a ton of risk.

Snowboarding, I add. Kayaking. Mountain climbing.

Yes, she smiles at me. Did you ever worry about him?

All the bloody time! I answer.

He’s got all that good, rich experience. No one could have saved him if his parachute hadn’t opened or he’d been caught in an avalanche …

She pauses and changes direction.

Do you see what I’m trying to say? You are fighting “what is” so hard. It’s not something you can fight. It’s a battle with yourself and we are losing you to it. If you lose any more weight, you are going to disappear!

You have to live for you, while you care for Lincoln. The fact is, he is on his path and you are on yours. You can’t walk his path for him and you have to stop trying. You can support him but you can’t fix this. What you can do is look after yourself better than you are doing. When you bring a less troubled, a stronger self, your visits will be doing him more good as well. I’m not telling you to stop visiting. Keep coming, keep doing all the lovely things you do for him, IF you have the energy and the desire… IF that is what makes you happy. This is his walk, not yours. Do you see?

She was right when she said it might make me angry. It made me really angry at the time. How dare she! She hasno business telling me to smarten up! she has no idea what we are going through, but I thought about what she said almost every quiet minute for the next couple of weeks. I started to see what she was asking me to understand though I never quite gave up the notion that, if just tried harder, I could make his life better than it was. I yielded some of the control to fate, or the universe, or the great collective consciousness, or whatever else might be around, inside of us, or out there. I kept going to visit him every day, twice a day, because making sure he was comfortable, that he got to be outdoors and breathe fresh air, that he was lovingly tended to, helped me. It nourished me. It gave me purpose.

Still, every night when I left him I had a moment of panic.

What if this is the last time I see him? Does he know how much I love him?

June 2025

Eight years after his death, I have come to a place of accepting that I really, truly did the best I could for him. Yet, when I hear another’s story, I feel the memory of that burden of guilt and sorrow as a physical reaction. And in that moment, I am right back where I once was—and racked with guilt.

I have been asked in private, and in public forums, if he would have done the same for me. I’ve asked friends to pose that question so I can speak to it.

They ask. I answer.

Absolutely not! I say. He would have lost his mind!

It feels like I am throwing my husband under the bus when I acknowledge that he could never have done the same for me. He could not have cared for me the way I cared for him. It feels so disloyal to hold that thought, to speak it out loud, never mind write it down.

Lincoln was an adventurer who celebrated his 50th birthday by jumping out of an airplane, his retirement by riding a folding bicycle from Paris to Istanbul, and then climbing Mt. Kilimanjaro. He could not have spent day after day in that unstimulating indoor environment. He really would have lost his mind! He couldn’t have done for me what I did for him, but he would’ve done the best he could. That would’ve been enough but it would not have been the same. He couldn’t have walked my path, any more than I can walk his.

I write this all down, to remind myself that, when the guilt goblin sends out a tentacle, or a few, to tap and tickle me out of my complacent thinking that I did the best I could, I am telling the truth. I DID do the best I could. I loved him well. I cared for him thoughtfully. I know there are people… other women…who managed to keep their partners at home for the whole term of their long dying with LBD or Alzheimer’s or ALS, and without the amazing support from friends and family that we received. When I hear their stories, I am blown away by their strength and resilience.

By comparing and judging, I open the door to self-pity and the goblin of guilt. I have worked hard to at least keep that goblin a reasonable size, to keep it in its place. I do notice when it starts t to worry a new groove into my grey matter. I recognize that groove by the way it makes my gut feel, by the way it steals my sleep.

So I write it down. Writing it down is powerful defense against the guilt-goblin. It gives me a way to clarify the confusion of my thoughts. It opens me up to sharing what I think and feel with others who are also doing battle with the little creep.

June 2017

Lincoln dies. He disappears and I can’t find him. I can’t feel him. I weep and weep and weep. Now I know how this ends.

I phone my talk-therapy person .

I don’t know here he is, I sob. His absence is too big. I can’t do this.

Her name is Jude and she is wise and helpful. After listening to me talk and cry, she suggests we try something different. First she asks me to envision a tree that is meaningful for me in some way. My mind’s eye quickly finds a solitary, ancient, ponderosa pine. It grows in the distance, majestic on a summer-golden hilltop.

Leave the tree for now, she says after a few minutes. Now, look for your animal guide. Your spirit animal is waiting to show itself to you.

I am excited by the idea of a spirit guide. I try not to derail the integrity of the experience by anticipating what comes next. I wonder what it will be?

A raven, I think? I love ravens.

An orca matriarch? Hmmm. I don’t think she’s going to work out with the pine tree .

A she-wolf, or perhaps a grizzly sow…?

Stop it! I give myself the order. Let it be!

And there it is!

I gasp. That’s it?!

A very large, white cartoon rabbit, walking on his back feet, claps his front paws together with glee, his animation completely at odds with the beautiful, familiar , natural scenery my talk lady has helped me conjure. He (definitely a he) motions me to join him as he bounds up the hill, whistling and hollering encouragement.

Hey, babe! C’mon! Keep up! he calls in a very familiar voice.

And I start to laugh. I tell my talk lady what I am seeing but not whom, and we both succumb to laughter over this ridiculous being who isn’t playing by the rules, has never played by the rules.

Lincoln? she asks me.

Oh yes, you bet, I manage to say through my snorts and shrieks.

That big, goofy bunny leads me up the hill and right into the tree, deep into the tree, slipping through the fissured bark into its heartwood, and down, down along the great tap root that anchors it to the hilltop. We are just there, taking up no space, displacing nothing. All around us the finer filaments of roots wrap around great underground boulders left by retreating glaciers, before stretching their cells to meet their siblings, all their beautiful relatives, in the whole great and wondrous system of interconnection beneath the surface. The rabbit knows his way around.

Do you live here? I ask him

He grins and shrugs.

Did you choose to be a giant, cartoon rabbit? Or did it chose you?

He grins and shrugs.

Are you okay?

He smiles at me, the back of his front paw alongside his mouth as he mouths a conspiratorial “yes”.

I still visit that tree when grief stirs.The rabbit doesn’t always show-up but, when he does, he always makes me laugh. Always.

When I feel strong, I go to beautiful, wild places where I catch fleeting glimpses of Lincoln grinning from a cliff top, or boot-skiing down a glacier. I find heart’s ease in gratitude for all the goodness in my life. I write down the beautiful days, the kindnesses I witness, the kindnesses receive. I record the titles of good books, the names of good people, the unfolding of good moments.

I remember a beautiful, iconoclastic, frustrating, brave, funny, gentle, loving man. I remember the sound of our shared laughter. Laughter beats guilt

And so I write it down.

I carry grief with me because I was well-loved and loved well, It is a tender, pliant grief and it is very kind. It holds the story of Lincoln and me. I would not want it to disappear completely.

I hope those three shattered, guilt- ridden people find the honest measure of a good grief, that is both hard to bear and profoundly beautiful. I hope they can see that big sorrow grows in the same soil as big happiness. They are the same size.

I hope.

I hope they will read something, or speak to some wise soul, and have that moment of sorrow-washed clarity, that brings them to a place of peace.

I hope, that in the end, there's grace for us all. If grace

can live in a wheelchair mounted on the front of an adult-sized tricycle, and in an imagined, giant, goofy, white rabbit, it can live anywhere.

So, for them, for you, and for me, for tears and laughter that live in grief’s embrace and for the memory of the guilt that ought not to have a place, and for the love that is the best and truest of all things that do belong, I write it all down.