Avoidance

When I was in college, for one winter break, I worked as a temporary secretary at my mother’s lawfirm.

(This would have been 1984, or maybe 1985; at that point my typing speed meant I could command a pretty good rate, and I never lacked for assignments. I don’t think jobs like that exist anymore. Computer programmers are on Fiverr; my 90+ wpm typing speed wouldn’t even get me that. But I digress.)

Every profession attracts its set of interesting personalities, and the law is no different. I worked for one lawyer, fairly new to the job, who said she’d realized with some chagrin her letters to her friends and family were beginning to sound like legal briefs. I worked for another who seemed eternally grateful for the simple luxury of having someone else to answer his phone. And I worked, for three days, for a divorce attorney who sometimes left her door open when she was talking to her clients. She didn’t say anything confidential, at least not that I heard; but she’d frequently be silent, making small, encouraging noises now and then, speaking softly and with gentleness and sympathy to the people on the other end, all facing the shattering of one of the most important relationships of their lives.

To me, she was nasty. I was never fast enough. My unfamiliarity with the phone system was a source of comedy for her. She’d jeer at me, often in front of others, even when I’d been there a few days and started to do better. Every word she said to me was dripping with contempt and sarcasm. My mom said she was known to be pretty horrible.

Her clients loved her.

Sometimes who you are matters far less than what you do. Maybe all the time.

I’ve learned a lot of things about elder care, at least in Massachusetts, over the last few years. I’ve learned that “assisted living” isn’t a federally regulated term, and its meaning varies widely from state to state. (“Nursing home” is a more rigid designation.) I’ve learned that elder care is a business, like any other, and that means sales people and financial considerations. And they know the families they talk to are largely in shock, and vulnerable to kindness; and this doesn’t mean they’re not genuinely kind, but yes, they use that kindness to try to steer you toward their services.

I suppose I inevitably see the parallels with publishing. A publisher who decides to buy your work will say all kinds of nice things to you, and they may even mean them; but underneath all of that is a basic numerical calculus, and if it doesn’t fall their way, they will move on to be nice to someone else who might do better for them.

I’m too cynical for all of this, and yet I still care too much.

With elder care, my jaundiced eye is also a form of denial. Maybe they’re pressing memory care because it’s more expensive. Maybe they feel it’ll be harder for us to consider moving them elsewhere. Maybe they’re trying to lock in the income stream. Maybe my parents really aren’t that sick.

And then we look at the reality of it all, and we realize all those maybes are entirely irrelevant. Of course they’re looking at the financial side. Of course they hope we’ll keep my parents’ money with them. Of course getting it all in writing, in an actual lease, makes it easier for them to manage their books. That’s all good; where would we be if they went under?

None of that changes the fact that they’re kind to my parents. That they look after them. That they have expertise. That they take the time to reach out and reassure us when they know we’re worried and grieving and still, so much, wanting to believe our parents really aren’t that sick.

These are people who go to work every day and spend all their time with people who are terminally ill. Every day. That has to change you. It has to give you calluses and shields, because otherwise, how do you survive?

I’ll never get to know any of these people personally enough to understand how they do this work. I will always believe every family that needs their services should be able to afford them, that our society needs to rebalance and reevaluate and maybe blow up the terrible system we have now that means my parents had to have decades of good jobs and some financial knowledge and a massive, massive whack of good bloody luck to be able to afford to live in a safe environment with this increasingly common and deadly disease.

Everyone should have access to what my parents have. Not everyone will need it; not every family of a dementia sufferer will choose that sort of path. But care for the chronically ill shouldn’t be gated on income.

I’m getting political. That’s also denial.

My parents are moving Monday, and I will be helping the movers via Facetime while a pack of cheerful caregivers lies to and distracts my parents long enough for us to move their things to the new rooms. They will have familiar artwork. They will have some of their furniture. They will have their cat. They will have a smaller bedroom and large shared common areas and more people to talk to and a door to the outside world that’s kept locked.

They’ll be safe and monitored, and offered activities and socialization. They’ll hate it, at least at first; I have hope that’ll change. But they’ll be safe, which they’re not now, and denial notwithstanding, that’s what we need to focus on.

And we tell ourselves we can change it, because we can. We can move them somewhere else. We can move them to another facility, or to an apartment or a house, or to another state. All things are possible. We tell ourselves if they’re unhappy with this arrangement, if it becomes apparent after a few months that it was a mistake, we can just undo it, and that’s the truth.

We know we won’t.

I have this need to focus on how lucky we are. We’re lucky our parents have resources, that their financial strategy worked out long enough. We’re lucky they’re still with us. Personalities are still largely intact, although we’re teetering on the edge a bit with my dad. I still find such comfort in my mother’s voice; she still says the same things, she just forgets a few minutes later that she’s said them.

I can talk about how they are. It’s harder to talk about how I am. Because I’m undone. What I’m going through is something most people have to go through at some point: the loss of a parent is different for everyone, but it’s a near-universal experience. There have been books written about it, surely; probably famous ones I can’t think of right now, because they’re not about my parents, about what it feels like to lose my parents.

I’m so sad. And untethered. And lost. So much I’ve come to understand about being a child of these people over the years; so much I’m realizing is still subconscious. My father, who I am most like, I understand better and need less. My mother…I have such a strong need to rescue her, to take her away and fix all this for her. This has all been a lesson in accepting that I can’t do that, that I was never able to do that, that she chose her life, over and over again, and that all the wishes and dreams she shared with me and never pursued aren’t my losses, but hers, lost by choice.

I want to take something from this, some lesson, something useful.

And that’s denial, too.