Culture

Joining The Dementia Network, And Finding Gratitude

An illustration of a head in profile with a series of mechanical gears superimposed on it. i i
istockphoto.com
An illustration of a head in profile with a series of mechanical gears superimposed on it.
istockphoto.com

Dementia is a condition of the brain that causes loss of reasoning and memory. According to the Cleveland Clinic, 5-8 percent of people over the age of 65 suffer from one of the 50 causes of dementia. These conditions range from the incurable, such as Alzheimer's and Parkinson's diseases, to the highly treatable, such as vitamin B-12 deficiency and hypothyroidism.

From age 85 on, chances are 50-50 that a person will be faced with some form of dementia. It's easy enough to lose sight of the individual lives behind that statistic.

I hope I have never done that; I know I can't possibly do it now.

My mother has dementia. As I reflect back on the last six intense months, I've begun to feel something beyond the inevitable sadness. I've begun to feel gratitude.

Comparatively speaking, my mother's decrement in reasoning and memory is moderate. Some years ago, the doctor told us, she had "mild vascular dementia" brought on by reduced blood flow to the brain. Several mini-strokes contributed to the problem. No longer able to drive, she needed my help with shopping and finances, but mostly, life thrummed along. A resident of an independent-living complex for seniors, she enjoyed her two close friends, books, Netflix and computer time.

Dementia — such a harsh term, evocative of "demented," of snake-pit and cuckoo's-nest films — was to us just a word.

Then my mother was rushed into emergency surgery for a hernia. After weeks, first in the hospital and later in rehab, she recovered physically, though she requires 24/7 oxygen now. Cognitively, as the clinical phrase goes, there's "a failure to return to baseline." Perhaps the anesthesia was responsible, or more strokes occurred. The treatable causes (urinary tract infections can cause dementia in the elderly, for example) seem to be ruled out.

The bewilderment in her eyes hurts to see.

What must it feel like for her, plucked so suddenly from the familiar contours of her life, and everything now somehow dimmer?

I don't mean to exaggerate. She knows her family and friends, and participates in sensible discussions. Short-term memory, though, is badly damaged. In its place come vivid brain-generated realities that never actually happened. Dreams harden into memories and decisions are made via an internal logic beyond the reach of others.

The oxygen equipment is repeatedly dismantled, a key part found once in the laundry basket. An oxygen tank is pointed to and I'm told my father arranged its delivery to ease my upcoming travel. Breakfast is requested for two, so that my father may eat. (My dad has been gone for 25 years.)

Sounds upon morning awakening are of my mother's mother making coffee in the kitchen of the New Jersey house, as two sisters wait nearby. (All three are dead.)

Yes, I see what I've done there; I've written passively, as if no agent exists. The woman who filled my early life with books; who, with my dad, insisted that music lessons should come before replacing a threadbare carpet when money was tight; who, as a new widow, harnessed her courage, flew to Kenya, and baboon-watched on the savanna with me, is, at times, living in another mental country, and that's not always easy to face.

Some days, I spill over with impatience, then guilt. It's just that I need to undo (and occasionally apologize for) some things that she does. The paperwork is endless. I cry over none of the rest of it then weep after an hour's tangle with a corporate phone tree.

So where is the gratitude? By the day, I'm becoming more and more thankful:

* For the kind caregivers at my mother's assisted living residence, who oversee her medical needs, and who arrange music and theatre events for their residents.

* That when I speak in shorthand — "bad dementia day" — my husband, daughter and dear friends offer a hug and an hour's quiet reading time, or send messages of long-distance support.

* For friends and co-workers, and even acquaintances, with whom I chat in the post office or grocery store, who share their own stories. It's inspiring to realize how very many people do their best, day by day, for the dementia sufferers they love.

* For the worldwide web of doctors and researchers who throw their best at seeking cures or treatments for dementia's causes. Along the way, their scientific findings, such as the role of exercise in ameliorating dementia symptoms, make a significant positive impact on patients' lives.

And, my mother is with us. She's a person who matters for who she is now. She thinks about the world and the events and people in it; she gives love and feels love. I'm thankful for my mother.


You can keep up with more of what Barbara is thinking on Twitter.

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