Finding my way

Into deeper acceptance

Our early morning routine, most weekdays, begins with my husband donning his old navy cardigan over his pjs, then heading to the living room to turn on the morning news. I head to the kitchen and fill a large glass of water for each of us, my way of making sure we start the day well-hydrated.

One recent morning, before setting Doug’s water down, I slid a coaster that was on the end table beside him a couple of inches towards him, so that the tumbler would be easier for him to reach. Then I set the glass on top.

“No!!!!” he shouted so loudly, so angrily, so unexpectedly, I jumped.

“What?” I couldn’t fathom what he was reacting to.

In response, he glared at me, as if to say, What is the matter with you? Then, without a word, he picked up the glass and emphatically moved the coaster back to its original position in the centre of the table, before setting his water down again.

You know that feeling of hurt or outrage that can arise instantly and instinctively at what feels like injustice directed towards you? When someone expresses anger or frustration with you, but you think it is undeserved?

When you live with a loved one who lives with dementia, you learn to quell that feeling. You still feel it, of course, but you learn not to express it, to respond in self-defence, to argue. To do so would be futile. You learn that such moments are just that, moments. You know it will pass. You learn to walk away, even if you do so shaking your head.

Photo by: Daria Nepriakhina, Unsplash

“Think about it,” writes David Brooks in How to Know a Person, “you have a three-pound hunk of neural tissue in your skull. And from this, somehow, conscious thoughts emerge. You emerge. No one understands how this happens. No one understands how the brain and body create the mind. So at the center of the study of every person there is just a gigantic mystery before which we all stand in awe.”

My husband’s brain on dementia is a mystery to me. I walked away that morning. But I’ve thought about that episode ever since. And I still have no clue what it was all about.

Is he starting to have visual-perceptual-spatial problems, as can occur with corticobasal syndrome (CBS), one of the conditions with which he was diagnosed, but which I’d been thinking might be a misdiagnosis, as I had yet to see any symptoms? Was it his perception that I was placing the glass too close to the edge of the table?

Or was it just another example of the rigidity that can come with frontotemporal degeneration (FTD)? Maybe he liked where the coaster was originally placed and got upset when I moved it? (His rigid preferences—about such things as the position of our living room blinds, the placement of furniture and decorative accessories, even where I put the throw pillows when I remove them from our bed at night—while challenging to live with, are understandable when I remember that as parts of his brain are shutting down it must be getting harder for him to process and adapt to even relatively small changes in environment or routine.)

Or was his upset related to the obsessive-compulsive disorder (OCD) that is also a symptom of FTD and increasingly a part of his daily life, and thus also of mine?

The only certain, constant thing about neurodegenerative disease, it seems, is change.

And yet.

Even with all the losses and catastrophic changes that have come to his thinking, personality, and temperament over the past several years, I am learning to count my blessings daily.

Don’t misunderstand me; I’m not an aspiring Pollyanna. I would give anything to have Doug back, with his mind healthy and whole, and his true personality restored.

But part of coming to a place of acceptance for me means learning to live in the present moment, and that means being alert to the small mercies that grace our lives. Dementia experts refer to it as “both/and” thinking. Instead of wishing for my old husband and our old life back, before FTD struck, I am learning to accept that “it is what it is” and embrace the now.

My faith in the One to whom I entrusted my life many years ago helps me here. I have long believed God has a plan and a purpose for our lives—for mine, for Doug’s, and for yours. No disease will thwart that purpose. In other words, yes, my husband has FTD, and I believe that we are intimately known and loved by God. I believe that God is with us, and will be with us, even in and through the worst of times. Even when I don’t feel Him. I am learning to trust that there must be good in every day, because God is good and He is here, if only I have eyes to see.

In his book, My Bright Abyss, Christian Wiman asks, “What is this world that we are so at odds with, this beauty by which we are so wounded, and into which God has so utterly gone?”

His next paragraph, consisting of a single sentence, is what gives the question its power. “Into which, rather than from which: in a grain of grammar, a world of hope.”

Our world of hope

OCD is one symptom of Doug’s FTD, and it has come with an upside. While there are so many things he once did that he can no longer do (drive, care for the car, use his computer, pay bills, manage our finances, schedule appointments, manage his medications, barbecue, pursue his hobbies), there are many things he still does. He makes our bed beautifully, by himself, without prompting, every day. He voluntarily tidies the kitchen more than I do. Seeing my blonde hair on our dark wooden floor or on my shoulders drives him crazy, so as the hair falls, he picks it up or picks it off. He’s a whiz with the vacuum, and he does a better job of squeegeeing the shower than I do. The minute I have folded his laundry, he puts it away.

He tells me he loves me several times a day. And when we are out walking, he always, always moves me to the inside of the sidewalk, an old-fashioned habit—something he has done as long as I’ve known him—that I once took for granted, but which today has the power to move me deeply. Every time.

There is still so much good that he contributes to our home, to our daily life together, and to my life. This is the world that we are so at odds with, and into which God has come.

And for all of the good, I am grateful.

“Some seasons are dark indeed. … But even in those, as we find our way into a deeper acceptance, we may find that acceptance may grow into something more than reluctant concession. The grace available on what seem the worst days of our lives may be more abundant than any of us expects, and may teach us, in our sorrow, something new about hope.”

- Marilyn McEntyre, Word By Word, p.218