Wednesday, June 1, 2016

Confessions of a Caregiver

My wife's charge is about to pull into the driveway. I quickly flip Pandora to her favorite station and stuff an English muffin in the toaster. Before she's made it to the front steps, I've got jelly on her toast and a mug of her favorite drink waiting. I swing the door open and shout, "Yay!" She smiles broadly and shouts "Yay!" back. Then she dives into her breakfast while happily putting all of our dishes where they don't belong. I sing along with her music, shaking my butt to make her laugh. She's babbling about something I can't understand, and I don't try to make sense of it. I just look for clues as to whether I should react with surprise, laughter, or sympathy. If I'm wrong, she can get frustrated, which can quickly turn to rage. And once she's set off,  it can be very hard to turn the day around.

I try to keep her busy, to give my wife Paula a little more respite before she takes over. Today looks promising; it's warm and sunny. She'll probably be happy puttering around the backyard most of the day. Rainy days are more challenging. She no longer cares for puzzles, and TV tends to bore her after a few minutes. She always wants to be active, always wants your attention.

If you're picturing an impish toddler as you read this, think again. The person my wife cares for is her 80-year-old mother, who suffers from progressive aphasia (the loss of ability to understand or express speech) and Alzheimer's-related dementia. She lives 15 minutes away from us with her husband. Paula has been her primary caregiver for the past year and a half.

My mother-in-law is a beautiful woman with a radiant smile. She arrives each morning impeccably dressed, accessorized, and made up. She has a zest for life and a physical energy that belies her disease and her age. She adores animals and babies, delights in a crusty buttered baguette, loves thrift shopping, can't help but shake her booty if you put on music, and works in the garden for hours without getting tired.

When I met her six years ago, she was still independent: actively involved in the senior center, driving around to her favorite Goodwill outposts every day. Her husband, a lethargic, overweight Rush Limbaugh devotee with heart issues, did not constrain her. But about three years ago, her speech began to lose its fluidity- occasionally at first, then noticeably. She'd mix up words and struggle to say what was on her mind. Her husband responded with irritation and impatience. "Spit it out, Peg," he'd bark at her when she'd struggle. She stopped going to the senior center. Kaiser diagnosed her with early-stage dementia and reported it to the DMV. The DMV revoked her license, even though she'd passed the written test with flying colors. Overnight, she lost her freedom, relegated to her husband's torpid lifestyle. Since then, in addition to losing her license, my mother-in-law has lost her ability to count money, to read, to do puzzles or cook. Her speech has deteriorated to the point that even her immediate family frequently has no idea what she's talking about. We all suspect that her thoughts are much more lucid than what she's able to tell us about them; Kaiser's diagnostics are blunt instruments, not well-suited to the nuances of neurocognitive disorders. It's frustrating for everyone.

Paula fell into the role of caregiver by accident. In February of 2015, she found herself unexpectedly unemployed, part of Picaboo's Bay Area layoffs. Around that time, her mother began routinely misplacing her wallet; each time, she would phone Paula hysterical, certain that her husband had stolen her money. Each time Paula came to her rescue, digging through closets and drawers until she found the wallet her mother had invariably hidden from herself, her mother leaned on her more. Before we knew it, Paula's stepdad was dropping her mother at our house three to five mornings a week. On the weekends, Paula's sister, who still works full-time, blessedly steps in to help.

We have some great days caring for my mother-in-law. She laughs easily and has an infectious smile Unencumbered by election year stress or the nuisances of life administrivia, she exudes pure happiness when she is enjoying herself. She dances like nobody's watching. Like her daughters, she's attuned to beauty everywhere, and she celebrates it. And she can be really funny.

But there's no way of knowing how the day is going to go. The strain to understand her can be exhausting. Exempt from the confines of logic, she can fly off the handle at any time- for what seems to the outside world like no reason at all. And the outside world is not kind about it. A mother with a screaming two-year-old at the grocery store has the empathy of fellow parents around her; a daughter being chewed out by her elderly mother at rock-concert volume in the middle of Walmart gets no such compassion.  Dementia caregivers are socially isolated even when they manage to leave the house.

To date, our attempts to introduce a caregiver other than family have crashed and burned. Although dementia is characterized by the inability to form new memories, my mother-in-law still retains strong emotional associations with new experiences- and they stick. She can't articulate why she hated going to the adult day center, or why she didn't like the woman we tried to introduce as an individual caregiver, but there is no talking her out of it. She has always had trust issues; her disease has exaggerated them.

The result is increasing dependency on Paula - a dependency without redundancy. If we were talking about a cloud system, this would be a big red flag. It's a fragile solution, easily disrupted. We have two vacations planned this summer; what will happen when Paula isn't around to run interference? Last year, when Paula's stepfather went in for open-heart surgery, three days a week became 24x7 care for three weeks. My mother-in-law, despite her volatile marriage, was thrown off badly by her husband's absence; she lashed out at Paula and her sister as they desperately tried to juggle life around their mother's round-the-clock needs.

Sitting one ring outside the bull's eye of my mother-in-law's care, I'm in a state of protracted adjustment. Dementia is brutal for a control freak with chronic anxiety. There are limitless what-if scenarios to play through, and because we're in a world ungoverned by logic, my management skills are useless. I haven't given up believing that I should resist this because it's unfair. I cling to a notion that my home should be a retreat from stress. I insist that there must be a plug-and-play caregiving solution out there. I reject the idea that I can't fix this. And because resistance is futile, I often feel frustrated, trapped, and depressed.

It's uncomfortable to confront the things you like least about yourself. Caring for my mother-in-law has outed me as self-centered and petty. Dementia is inconvenient for me. I want to fix this so I can get back to my regularly-scheduled programming, which involves a lot more of what I want to do.

Eckhart Tolle offers sage counsel to folks like me who suffer from fabricated trauma: "Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it." It's a powerful construct. Alzheimer's is a heartbreaking disease. It's crushing for Paula and her sister to watch their mother recede into a fog. I hope that there is a cure someday. But for now, this is what is. Trying to fix it misses the point; it assigns a brokenness to being ill. Our life isn't broken. We're contending with some things that we didn't expect, and they're challenging us. What else is new? This isn't always pleasant, but it's not inherently bad, or wrong.

"Eckhart Tolle offers sage counsel to folks like me who suffer from fabricated trauma: Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it." 

The Landmark Forum teaches that our actions are perfectly correlated with the way the world occurs for us. The story we tell ourselves about our life dictates our behavior; it's why two people having identical life experiences can respond so differently. If I abandon my narrative about being a dementia caregiver-- that it's unfair, that it's a burden, that it's sapping our energy and exacerbating my proclivity for anxiety-- what becomes possible? Contentment? Gratitude? Fun? Willingness to choose this life, warts and all, and lean into it-- because it's all I've got, and it's amazing, and the talk track running on loop in my head is not really helping anyone, least of all me?

Yes. All that is possible.

In twenty minutes, my mother-in-law will knock on our door, ready for a day of God-knows-what.

Let's do this thing.