On losing hope

And finding it again

My world is becoming smaller. Day by day, I sense the aperture closing, darkening the margins of my life.

As my husband’s dementia progresses and I become incrementally and increasingly his intellectual and emotional support human, I recognize that this narrowing of horizons is as it must be. Our 39-year marriage has been characterized by love and faith, easy companionship, mutual support, trust, and loyalty. A constricted life is a small price to pay for loving someone who has long loved me so well, someone whose partnership has been the source of so much joy—someone whose brain is dying. While I’d give anything to avoid going through this, I wouldn’t want to be anywhere else but at Doug’s side as he does.

“This” is what we have been told is a “major neurocognitive disorder,” likely Frontotemporal Degeneration (FTD) and Corticobasal Degeneration (CBD).

It’s not our first close encounter of the dementia kind; my father-in-law died of complications of Alzheimer’s. We came home from our honeymoon to find him in the hospital with a broken hip, hallucinating about turkeys, and newly diagnosed with the disease. He was a year younger then than Doug is now—and died just before our first child arrived four-and-a-half years later. When he passed away, I remember worrying that my husband shed no tears. Doug told me he’d cried them all out long before.

More beans and kale

A little over a year ago, tests confirmed that Doug was living with mild cognitive impairment. For months afterward, I felt hopeful that we could avoid his father’s fate. “Love hopes all things,” I told myself. But I know now that my source of hope was my desperate dive into learning everything I could about possible treatments and cures. If there were a way to avoid his father’s end, I would find it.

I read The End of Alzheimer’s, and Ultra-Processed People, subscribed to wellness and nutrition podcasts, and converted our diets to mostly whole foods and plant-based proteins. We ate more beans and kale and avoided burgers and pizza. I found a naturopathic doctor to guide us in choosing the right supplements. I rejoiced when told Doug had high levels of iron, lead, and mercury in his body—after all such things could be removed, we were told, and when they were, we expected he would get better. I accompanied my husband to doctors’ appointments to ensure good communication, labs to watch him give countless samples, and blood donor clinics; donations lowered his ferritin levels.

I bought costly supplements like Creatine and Cordyceps, ordered prescription medication—from an out-of-province compounding pharmacy—to get the lead out, and helped him complete complex tests to confirm it was gone.

“Hang the expense!” I reassured him repeatedly. “It’s cheaper than long-term care!”

I also nagged endlessly; “Don’t have ice cream; have fruit instead.”

“Did you take your fish oil?”

“Skip the fries, let’s get a salad.”

“You had a beer last night; you shouldn’t have one tonight.”

We made other changes. I arranged for newspaper home delivery, hoping he would watch less TV. I took over our finances—something he’d always loved to do, but our retirement nest egg had grown cold with neglect. When he struggled to use his computer or cell phone, I sat with him until we figured it out. We assembled a list of his passwords—a copy for him and one for me, just in case. I used it repeatedly. We were shoveling the walk amid a snowstorm.

Hearing the D-word

For a while, I was filled with hope; he seemed stable. Then, during late summer travels, my always laid-back, steady-as-a-rock husband was anxious at times, and angry at others. He had moments of appearing vulnerable, even scared. This was all new. He had changed. Who was this man? I remember the day it dawned on me that my cherished life partner was gone, and I couldn’t pinpoint exactly when it was that he had left. When we got home, further testing confirmed dementia.

For weeks after hearing the D-word, I lost hope.

“You want the hamburger? Ok.”

“You don’t want to take the Lion’s Mane anymore? No problem.”

What can be the source of hope when you have a diagnosis for which there is no cure and when all your efforts and aspirations have proven to be in vain?

I worried I would be sad forever and wondered if I was destined to live out the remaining years of his life and mine in low-grade depression.

“You’re not depressed,” my spiritual director said. “You’re grieving.”

A hard grief

It’s a hard grief when your loved one is profoundly changed but still present, mostly oblivious to his decline, and not wanting to hear about it anyway. There is a certain ache and loneliness to yearn for the man you have loved long, to miss his person, his protection, and his partnership deeply. There’s also guilt for the embarrassment you feel at his increasingly odd behaviours, for not being more grateful for the parts of him that remain—because those parts are so different. There is deep dread knowing that even those parts will eventually disappear.

The grief is ongoing. But one day, I felt God whisper to my spirit, “You can still have hope for this day.”

Today my research focuses on sources of hope, courage, and strength for caregivers of loved ones with dementia. A study published online in Current Psychiatry Reports found the majority of dementia family caregivers to be “sufficiently disturbed to be of concern to the mental health professions.” An oft-cited Stanford study published in 1999 reports that caregivers experiencing strain had a 63 percent higher mortality risk than non-caregiving peers.

I am determined not to be among their number. For Doug’s sake, and the sake of our children and grandchildren, I want desperately to survive the course of this disease. Please, God, let me survive.

Now, I try to ensure we (mostly) eat well, exercise (somewhat) regularly, prioritize sleep (as much as possible), and tend to our souls (as best we can). I remind myself that the keeper of our souls is the One the Apostle Paul describes as “the God of all hope.” In Him, I placed my trust long ago.

And I have new hopes: that God will enable me to care well for Doug to the end of his days; that I will search for and find joy and beauty in each day we are given; and that my love for Doug—and the love he has always had for me—will make a difference as this disease progresses.

We’ve had this piece of word art on a wall in our home for over a decade. Today it hangs in our bedroom, above Doug’s dresser. He placed the little cross there months ago. It seems to belong.