John Leland, a reporter for The New York Times and a former editor in chief of Details, has spent his career offering astute observations on American life and culture. Here he describes the responsibilities of caregiving and the emotional impact of caring for someone with a chronic illness. This is an edited transcript of an interview conducted on February 12, 2009.
How did you get interested in the subject?
Well, I have any elderly mother myself, although she wouldn’t think of herself as elderly, of course. But I think it’s just a fascinating subject, because it gets to the emotional parts of people’s lives immediately: either you’re old yourself, or thinking about getting older, or you have a parent who’s old. You know it’s something that touches everybody.
You’ve talked to people who are very much involved in caregiving. What do they tell you?
To a person, they say, “You have no idea what it’s like until you do it.” Even people who are professionals in the health care field say, “The first time I had to turn my mother in a bed, I had no idea what it was like. I had no idea whether I was doing the right thing.” These people are very competent professionals at work. They’re skilled, they know what they’re doing, they know they’re doing a good job; they get home and these sandwich generation people (are) dealing with their elderly parents. And all of a sudden, expertise is out the window, expectations are out the window. The whole idea of performance is out the window and they’re on their own; they’re just beginning again.
Is that because they literally haven’t seen caregiving? Or is it because some of these people are men that you’re talking to who absolutely never thought they’d take care of their mothers?
Well, some of the men who are doing it are kind of absolutely blindsided by it. Some come to it quite naturally, but a lot of them never expected to have to do this. They never thought of it as something guys do, and now they face this idea that the other men around them don’t think it’s something that guys do, and women around them who are also caregivers, don’t think it’s something guys do. So they’re trying to figure out where they fit in. A word that a number of them used was “invisible.” They feel that as male caregivers, their contribution is invisible.
Is that because they try to keep it quiet or because it’s just so time-consuming that they never get out of the house?
Well, caregiving can be incredibly isolating: you’re at home with this person and you know that nothing you can ever do is enough. So you do everything you possibly can, and a lot of people end up being cut off because of that. They don’t see other male caregivers because of that. Women are more likely to join support groups; I think that’s just in general, across the board for anything, but also true for caregiving.
Caregiving requires cleaning people and I suppose if a man has to put his mother into the bath or clean her, that’s really a difficult personal obstacle for him to overcome.
Oh, as one of the professionals said to me, that’s where the rubber hits the road. Men tend to be really good at balancing the checkbook, helping out with the finances. When it comes to what’s called personal care – helping in the bathroom, helping in the bath, in the shower – you have to remember the elderly population is predominantly women, so it’s a son taking care of his mother, and they were just never raised to give mom a bath. They were never raised to help her clean herself on the commode.
The people that you’re taking care of really aren’t going to get younger, they’re really not necessarily going to get better, are they?
I think this is one of the hard things about caregiving: it’s not something you can succeed at. You can’t make that person better; no matter what you do, they’re going to decline. And you work so, so hard and the payoff is they decline — a little less painfully. They decline a little more glacially. They decline perhaps a little more happily. But, you know it’s always going to be decline; you can’t win.
You have used the phrase: boomerang generation. Would that be the children of the sandwich generation, who have gone off to college, and come back home?
There is an elderly boomerang generation, too, who have gone off, have lived on their own, and now they have to come back and live with their children. And we see that in New York strongly, but also in other cities. People when they’re in their sixties, they’re really healthy, they go to Florida and play golf, they just love it. They want to be out on their own in the sun all day, be in Arizona. As they reach their seventies, eighties, and nineties, they don’t want to play golf anymore. They want to be where their child is, in Queens or on the south side of Chicago, or wherever the child may be. And then they come back home and so the daughter or son misses them during those healthy elderly years. They saw them once a month, and now they’re in their home when they’re really in their most needy period.
Are the people you’ve spoken to happy to see Dad and Mom moving back in?
The people that do this, say it’s the most rewarding thing they’ve ever done, and the most difficult, and the most crippling. And it puts a strain on their marriage, puts a strain on their relationships with their own children, many times. And they say it’s the most rewarding thing they’ve ever done.
Are the stresses of taking care of the elderly actually beginning to change the shape and the nature of parts of society?
Well, the stresses are everywhere: there aren’t enough nurses, there aren’t enough doctors, there aren’t enough children to take care of them. Remember, we’ve been having smaller and smaller families for years, and we don’t have non-working spouses in those younger families. So your mother has fewer children than her grandmother had, and it’s less likely that any of those children are going to be non-working. There’s not the free time available to take care of them, so yes, the stress is throughout the system.
There must be some deep pleasure in taking care of a parent, as well. Isn’t there a sense of giving back?
I think there’s a reward. This is the person who took care of you, this is the person who did the most intimate things for you, changed your diapers, or was there to clean up for you when you made all your messes, dug you out of scrapes, and now it’s a chance to do something for them. I think that’s where a lot of reward comes from. But the caregiving shortens people’s lives, we know that.
Caregivers have a higher mortality rate, higher rates of depression, higher rates of high blood pressure. It’s very difficult on the caregiver’s health.
Who decides when Mom or Dad isn’t going to drive the car anymore?
Some people say the driving question is the most difficult and freighted issue to raise with their parents, to say, “Dad, I want the keys,” or, “Mom, I want the keys.” It gets at so much because so much of our identity is wrapped around our mobility, our freedoms. To give that up is to give up a sense of independence and a sense of yourself. No one wants to give that up. Older drivers tend to be a little bit safer than they’re given credit for. I don’t think that the stereotype of Mr. Magoo driving the car down the sidewalks really holds water. But there comes a time when people are safer not driving, and that conversation is a difficult one.
How do you take the keys away? Are they simply put on the table and asked for, or do you persuade someone that they shouldn’t be driving anymore?
I would say that the best thing is probably to have that as a conversation for years in advance. “Dad, what about when you’re not able to drive anymore, what do you want to do then? You’re driving fine now, but what are your plans for that?” You know, there’s room for great transparency and openness in these relationships earlier, before there’s a crisis on the table, and that of course applies to finances, too. What do you want to do with your money? But we don’t like to discuss that.