The Net

Caregivers need a safety net, and relying on it doesn't have to feel like a moment of failure.

Photo by Andrés Canchón on Unsplash

“How’s Mike doing?”

It’s the question I dread most. The standard reply—He’s fine—hasn’t been true for years, and most of the people who know me also know that. But I learned early on that people who ask this question aren’t really fishing for information; they don’t actually want to know how Mike’s dementia is progressing. They’re just being polite, saying what people say to each other, on autopilot. And I’ve found ways to answer that question without creating an uncomfortable situation for anyone. He’s hanging in there. Taking one day at a time.

I know the people who ask after Mike aren’t being disingenuous: they really do care about us and wonder how we’re navigating our situation. That’s why they’re asking in the first place. One of the ways we take care of each other is by raising the questions a stranger wouldn’t even know to ask; that’s how we tell each other I see you. I know you. I haven’t forgotten about what you’re dealing with.

Many of those same people have told me they’re more than willing to offer whatever help I need—all I have to do is ask. That’s easier said than done, of course. No one wants to ask for help. Even when I asked friends if I could put their names on the list of people approved to pick up Mike from his dementia care program, I followed up with It’s very unlikely you’ll ever be asked to do this. I just need a safety net in case of a serious accident or something.

Everyone I asked agreed to be on that list without a moment’s hesitation. They were more than happy to be a part of my safety net. I imagine they would have done the same even without my assurance that they would most likely never be called upon to prove how strong that net actually is.

For the past few weeks, I’ve been trying really hard not to think about the last days of actor Gene Hackman, wandering around his home in the advanced stages of Alzheimer’s Disease, most likely unaware that his wife, Betsy Arakawa, had died. Investigators believe she lay on a bathroom floor for two weeks before her body was discovered. Hackman lived for another week after she died.

I worry about leaving Mike alone for half an hour while I run to pick up takeout food for dinner—I can’t imagine how he’d manage on his own for days on end. So perhaps it’s not surprising that most of the commentary I’ve read online focuses on questioning why Arakawa failed to build a safety net for herself as a caregiver. With all that money, why didn’t she have an army of helpers? Why didn’t she call her doctor as soon as she became ill herself? Didn’t she realize that her husband was completely dependent on her and, if something like this happened, he’d be left all alone?

I refuse to second-guess any decision a caregiver makes, and I can easily imagine how complicated this situation was for Arakawa. Hiring reliable home health aides, and making the decision to allow strangers into her house, would be hard enough. But how would Arakawa have known who she could trust to maintain the privacy that she and her husband guarded so closely? Who could she trust not to take (and sell) photographs of their home—or her husband, in his declining health—or herself, in the event of a medical emergency like the one she suffered?

Finding one or two trustworthy people would have been a challenge. An army? Close to impossible.

I’m absolutely certain Betsy Arakawa knew her husband was completely dependent on her. No doubt this knowledge was a heavy weight she carried through every single day as she did her best to keep him safe.

And as for taking care of herself—well, she tried. But our healthcare system in the United States is so broken that she couldn’t receive medical treatment without first seeing a doctor in person, a mandate that was complicated by the fact that she couldn’t leave her husband unattended. So she didn’t make it to the appointment she’d set up for herself. Either she couldn’t find someone to stay with her husband or she’d already died by that time.

The latter explanation seems most likely. The medical clinic she’d called tried to contact her when she missed her appointment, but she didn’t answer.

Everyone in my safety net reminds me to Take care of yourself, too. I do my best. I see my own doctors for regular checkups, take my meds, eat well. I try to get some exercise on a regular basis. These are all things I did before Mike’s diagnosis, but I do them now to keep both of us healthy and safe.

By extension, I also do these things for everyone who’s part of my safety net. I’m trying very hard not to slip from the tightrope I’m walking each day, balanced between the giving and receiving of care, and fall into the waiting mesh of helping hands. Because the net is there for a purpose, but that purpose is just in case: of a disaster, of calamity I didn’t (or couldn’t) manage to foresee and avoid. So it’s hard not to feel like needing the net will be a moment of failure.

But the therapist I’m seeing now suggests another way to think about it: That safety net is made up of people who’ve volunteered to wait around for an opportunity to show you how much they care. That’s a pretty big deal, having so many people who love you.

When I think about it that way, the net is less about my negligence—my failure to prepare for the inevitable moment when I can’t do everything myself. It’s more about the abundance of good fortune in my life: no matter how difficult any day might be, I can walk through it with the confidence that comes of knowing there are people ready to catch me if and when I fall.

I know how lucky that makes me. Not everyone can say the same.