June 18, 2008--Defiance

There is this fearful symmetry—

My mother will be 100 on June 28th and though until six months ago had seemed a version of “perfect,” recently she has been in and out of hospitals and rehabilitation facilities for a variety of serious ailments. And it is questionable if she will be able to regain her independence by her birthday, much less if ever.

Rona’s mother, though much younger, lives in assisted living because she has had the bad luck to be afflicted by various life-threatening conditions for a number of decades and has thus seen chipped away virtually all semblance of what it means to lead an autonomous life.

One mother 1,200 miles south of us, mine; the other, Rona’s, 75 miles to our west. We, plunked in the middle pulled daily, sometimes hourly, toward whichever one requires attention, advocacy to that heartless part of the medical world, or just pricks away at our concerns and, yes, guilt.

Guilt because of whatever we might have failed to do for them in the past (there is a longer middle-of-the-night-generated list than I am prepared to share); guilt because of how fortunate we are to be able to live such a comfortable and free life while they are trapped in their struggles; guilt for what we are still not willing to offer—more of our time and devotion—even though we are substantially unfettered from the pressures of traditional forms of work.

Every walk on the beach, every unhurried lunch, every afternoon nap, every new book, every friendship comes thus with a steep emotional cost.

Yet, there is fortunately more to report.

Late last week we were visiting Rona’s mother who was again in the intensive care unit because her doctors were unable to understand or adequately correct her low levels of hemoglobin though we were happy to see her perking up by the time she had received her third unit of whole blood. As we saw her moment to moment coming back to her old self, becoming more alert and gregarious, Rona took the opportunity to ask her why, when she knew she shouldn’t, why she kept attempting to get in and out of bed unassisted or on her own to transfer from her wheelchair to the toilet and as a result had begun to take dangerous falls. Falls that could very well jeopardize her life.

This woman, who for all of her adult life had played a traditional accommodating role in her marriage and in the larger world, who had unquestioningly seemed so comfortable tending exclusively to the needs of others, now hooked up to a web of drains and tubes, strained to haul herself up in her hospital bed and with unaccustomed sparkle, looking unwaveringly at her second daughter, said, “I was being defiant.”

Rona chuckled at this playfulness, relieved to again see evidence of the reappearance of her mother’s familiar self-mocking personality. But her mother, understanding the meaning of Rona’s smile, wanting to be certain that she had not misunderstand her true meaning, repeated that in fact she was being defiant. That she was not, as was usual, making a quip at her own expense or giving in to the pressure and demands of others.

* * *

Later that day I called my mother, back home again from her latest rehabbing. This time, at the family’s insistence, with 24-hour-a-day aides. A circumstance that she hates. To her nothing more represents decline than having to depend upon these remarkable “strangers.” But she relented when we asked her to do this for our, as opposed to her sake—so that we would not have to unduly worry about her.

“All right,” she said. “I will do it for you. For your peace of mind. But as soon as you feel I can get along on my own I want you to promise that I won’t have to have them in my house.”

We agreed while acknowledging among ourselves that we would play this, and her, week-by-week, stretching out the time of her altered reality sufficiently so that in a few weeks what she so dreaded would become familiar and make her feel more secure than invaded. That she would hardly notice that there was someone there to tend to her.

When I spoke with her the other afternoon, since it had been a full two weeks since she had returned to her apartment and since she had that day received a good report from her doctor, she was eager to see if it was all right with us to dismiss the aides since, she claimed, she had really never needed them and asked, as she earlier had my brother, did we now have enough peace of mind to be comfortable with her again living on her own.

After the call, when I conferred with my brother, on the evidence of his recent visit with her, he said that she was still objectively weak and that to continue the aides was actually more in response to her real needs than our fears.

I agreed, hung up, and that evening, as I was about to tell my mother that we still wanted the aides to be with her—yes, I would as a ploy continue to insist, for our sakes—my brother called back to say that he was having other thoughts:

That there was no way, we must come to realize and accept, that we can make things “perfect” for her; that she had led a remarkable life; that she was fully compos mentis; and that she was therefore entitled to live out the remainder of that life as she pleased. Even in the face of the obvious risks.

That this was about her, not us, he said. That what she was asking was for us not to get in the way of her fight to retain whatever independence she could muster.

Then he added, “And isn’t this remarkable and wonderful.”

“And,” I said, thinking as well of Rona’s mother, “Inspiring.”