When things are “not quite right” (as Miss Clavell says as she turns out the light in [Ludwig Bemelmans]’, delightful children’s tale, *Madeline)*, I tend, like many of my friends, to start reading anything I can about the subject at hand.
I want to *know* and *understand*, as if then I might fix things.
Or I want to deny. Absolutely. That is, if I read about a situation that seems similar to mine, but turns out not to be, exactly, then I can simply dismiss my sense that things are not quite right and move on.
When the opposite happens, when what I read validates my darkest suspicions, there comes a very difficult moment of truth: There *is* something wrong. I weep then. Personal recrimination follows. Why didn’t I notice sooner? How can it be so common, so universal a problem that books have been written about it already? What am I going to do? Am I too late? Where do I turn for help? How can I pull myself together? I am so ashamed. Finally, I start crawling out of the abyss, gather strength, friends and physicians, and commit to helping this person I love. And in that process, of course, I learn and begin to understand so much more. This has been my experience with eating disorders, depression, and Alzheimer’s.
It’s happening again. About a month ago, I read a piece by [Jonathan Rauch], a columnist for *The National Journal *and a correspondent for *The Atlantic.* First published in *The Atlantic,* his story showed up in my *Dallas Morning News,* under the seductive headline, [“Letting Go of My Father].”
The subhead spoke to me: “ His elderly father insisted that he could manage by himself. But he couldn’t. The author found himself utterly unprepared for one of life’s near certainties—the decline of a parent. Millions of middle-aged Americans, he discovered, are silently struggling to cope with a crisis that needs to be plucked from the realm of the personal and brought into full public view.”
I was hooked. *My* Dad insists that he can manage by himself. But he can’t. And none of his well-educated, loving daughters independently or altogether, can get him to change his ways – to stop driving, for example, because he cannot see; to use a cane because his walk is so unsteady and he often falls; or to accept more help in his house so that he is not alone and at risk so much of the time. He has been invited, repeatedly, to move to Dallas, where all three of us live. And he refuses. It’s not as if he is in his family home, or even his dream home; after my mother died in 2001, he moved a year later to a condo in Florida. My brother lives in the area (but moved successively further away each of three times and has his own consuming health and lifestyle worries). He and my dad made some sort of peace, which is what Dad was seeking with the move to Florida, I think; but there’s nothing really tying him there now. *Except* his stubborn, foolish independence, which has my sisters and I feeling, as Rauch states “utterly out of our depth,” even as we, like Rauch, understand that his autonomy (or perception of autonomy) is the “thread by which his emotional health hangs.”
The other common thread Rauch describes is ours: “frightened by our incompetence, and worse, furious at our father for putting us in this impossible situation.”
It is not, Rauch posits, a failure of medicine to adequately treat the failing elderly, or to deal with the reality, the inevitability of their decline; it is, rather our failure, as a middle-class, middle-aged culture to recognize the caretaking crisis for what it is and to engage more palatable solutions and develop more emotional, psychological support for ourselves. I also think there are some structural changes that could help, suitable housing for seniors, for example, that fosters the independence they demand and, at the same time introduces, nay, breeds the interdependence they need. Improved, local-scale public transportation would make a huge difference, too. Multi-generational neighborhoods and apartment complexes rather than narcissistic ghettos of the aged or the new young professionals would help. Competent, caring home health care professionals – people paid a decent salary by your insurance company to do a decent job without breaking the bank – would make a big difference. (I know they exist, but my experience suggests the best of these professionals start running their own companies, and while they are impressive in the interview process (knowledgeable, understanding, and very professional) – *yes, yes, I would love to have this woman caring for my dad!!* – the people who actually show up at your home to do the work are generally not so swift at all, *not* people you can count on to care for and protect your dad in your place, and besides, insurance won’t pay for them anyway.)
All of this is percolating in my head again because I leave in a few days to celebrate my dad’s 88th birthday with him in Florida. And last week his erstwhile girlfriend called my sister to say his current arrangements, which she had once whole-heartedly supported, weren’t working anymore. He was having trouble seeing when he drove (duh), his legs were so weak he could barely walk from the parking lot to his bridge game, his hands were shaky with the coffee cup and he was spilling drinks on his clothes, and he was not so clear-headed as usual at the bridge table. Further, when she had gone to his place to help him find the contact lens he periodically loses in his eye or in his bathroom, the bathroom had been an embarrassing mess. It was time, she said, for a change. But don’t tell Dad she said so. She didn’t want him yelling at her again.
My sister and I are making the trip together. We don’t want him yelling at us again either. My sister, a physician, can assess the extent of his decline if it is health-related. A small stroke? More advanced heart failure? A need to adjust the medications? Who knows? And I will assess the rest – food in the house, cleanliness, clothes, the state of the checkbook, the break in the garage wall. We’ll find, I think, that he’s getting by. Getting on, to be sure, but getting by. Angry, sad, alone, vulnerable, more spilled upon, and one small fall or driving mishap away from disaster – but not a true disaster yet. We would like so much more, something so much better for him (and for our peace of mind), so we will probably try to reason with him again. But reason hasn’t worked for the last 10 years; why would it now? No one is going to tell him he can’t drive or live wherever the hell he goddamn pleases. He will be furious. He will call us names and demean us. I’ve read this script – or been read this riot act – before.
In the meantime, we’ve done our once a year Chinese Fire Drill again – chasing down independent and assisted living alternatives within a five mile radius of one of our homes. I have heard so many spiels about retirement living, I could probably sell the program to my 40 year-old son-in-law! But not to my dad. After one tour and orientation, I called it quits this time. No sense making the effort to line up something for Dad. It’s delusional to think he’d be getting on the airplane with us when we come back to Dallas. He won’t budge from his Barcalounger – probably the old one; he never did like that new one we bought.
As I sort through our very short list of options with my sisters, I am grateful to have sisters; they are the community of understanding and support Rauch says we need. They are more, too – they are family I can both love and relate to, care about and be honest with; they provide what Dad can’t or won’t; they salve my loss, alleviate my guilt, overlook my incompetence, and share my profound sadness that Dad chooses to live – and/or die -- this way.
A few years ago, in the midst of another of these “We have to do something about Dad” crises, I was counseled to engage in what Rauch calls “Letting go of my father.” So I am trying again – to love what is there to be loved, i.e, what he will let me love (the fiercely proud, smart, committed physician and the still-grieving widower); and to do what I can do, i.e., what he will let me do (visit occasionally and fill his freezer with apple pies, steaks, and spaghetti sauce); and to let go of the rest – most especially the sadness, the anger, the frustration, and the responsibility for a relationship that simply does not exist.
It still feels very “not quite right.” My sisters agree.
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