Privilege or burden or both? How to know I’m feeling right about this

Some time ago I wrote about the “privilege and the burden” of caregiving. I thought it was a nice turn of phrase. “Privilege and burden,” they don’t really go together; they’re contrasting ideas generating opposite feelings. Keeping them in balance is a challenging idea for me, and maybe for some readers, too.

But here’s the truth: In the four-plus years since my wife’s confirmed Alzheimer’s diagnosis, I’ve felt the burden much more than the privilege.

I sat with another caregiver a year or two ago, before I decided to write publicly of privilege, and confessed, “I can’t muster a feeling of privilege about what I’m going through.”

A short list

I try. In fact, I first thought I’d write a post about all the ways I’m privileged to serve Evelyn. The list I generated is sincerely felt but embarrassingly short.

• I’m privileged to see her pretty smile every day, often first thing in the morning. Even in her diminished state, she seems younger than most anyone else I know who’s her age.

September, 2023

• I’m privileged to be seen with her in public. Back in the day, she always, always looked nice. Now it’s fun to choose from the sharp outfits in her closet (most of them largely ignored these days), find the right necklace, and make an effort at combing into place the waves and curls created at the beauty shop. I’m not sure what she hears or feels when others tell her she looks nice. But their compliments always make me happy.

• I’m privileged, when I think of so many people (former colleagues and students and friends) who thought so much of her, to believe I’m doing for her the very best they would want for her.

• And I’m privileged . . . Well, I’ll stop with the above. Anything more would be closer to wishful thinking than factual reporting.

I’m not beating myself up for this. It’s a substantive list even though it’s not long. I’m glad I’ve been able to muster these positive feelings.

A better approach

But it dawned on me not long ago that maybe I’m thinking too much about my feelings. I’m coming to realize that feelings are not the best place to start. I’m remembering the advice some counselors give: “Act the way you want to feel, and eventually the feelings will come. Feelings follow actions, not the other way around.”

Several psychologist types have posted about this.

For example, Robert Taibbi wrote at psychologytoday.com, “Rather than believing that you need to feel better before you can act, you often need to act to feel better.”

Forrest Talley, a counselor/blogger asked helpful questions:

Some people think this is a matter of ‘fake it till you make it.’  Perhaps there is some truth to that perspective. But that view also has the error of placing the emphasis on feelings being the true measure of what is false and what is real. For example, if one acts with patience, but feels impatient, is that ‘faking it?’ Why are the feelings of impatience accorded more status than the behavior of acting with patience? In other words, if you act patiently while feeling impatient is that faking it, or being patient?

“It is called ‘brain repatterning,’” another counselor explained, “and it works . . . for the same reason that ‘positive affirmations’ work. . . . and they do, as silly as it seems.”

But there’s nothing silly about any caregiver’s duty or my desire to see those duties as a privilege. Maybe a counselor would tell me, “Act as though all you’re doing is a privilege, and soon you’ll realize it is.”

A new strategy

So I’ve decided to make that my strategy in coming weeks, and maybe I’ll post here to report how it’s going.

But I need to think a bit about how to act differently. It seems to me I’m pretty well on-task already.

Maybe the key is not to sigh, not ever to berate or raise my voice (even at the end of the day when all I want to do is go to bed), to avoid all reminders (“I’ve told you before not to do that”), to treat each new spill or splash as normal, to plan for extra laundry, to hide important papers or books or tools so I don’t find them in places they don’t belong.

And when I remember the impact this woman had on so many others, when I take stock of our 50 years of marriage—all she’s given and forgiven, all the ways she acted on behalf of her family before herself—I know she would have done for me what I’m trying to do for her.

I get to make life bearable, even enjoyable, for the special woman I know better than any other. In some moments of every day, it feels like a burden.

But, really, in every moment, it’s a privilege.