Talking With Lillian Rubin: A Wake-Up Call for Aging Boomers

In her book 60 on Up, this 84-year-old sociologist, psychotherapist, and caregiver shatters myths about the "new" old age. Here she talks about caregiver guilt, dealing with dementia, and the problem with living too long.

Lillian Rubin knows care giving intimately, from just about every angle. In her 70s, she was a caregiver to her mother until her death at the age of 94. Now in her mid 80s, Rubin is a caregiver to her 92-year-old husband, Hank, who has dementia. Her retired daughter, Marci, considers herself a caregiver to her parents. Rubin studied the personal and social consequences of the new longevity and aging in America for her book 60 on Up, published last fall.

A sociologist, psychotherapist for 35 years, political activist, and author of 12 books, Rubin is known as a keen analyst of America's social growing pains and the stresses on the nation's families. Like her previous books, 60 on Up began as an attempt to make sense of an experience she was living through. Built on research and interviews as well as examples from Rubin's own life, the book examines the complexities of aging with compassion and a refreshing, if not rosy, frankness. It's also a wake-up call to baby boomer caregivers to transform the social institutions that reflect America's abhorrence of old age before they take their parents' place.

We asked Rubin about the effects of care giving on families today.

Q. As caregiver to your mother and now to your husband, what advice do you have for other caregivers?

A. My main piece of advice is to take care of yourself, because you cannot do this if you're not taking care of yourself. That means there are times when you have to put yourself first. It's not selfish; it's crucial if you're going to keep doing your job.

But it's also different taking care of a parent and taking care of a spouse. My mother didn't live with me. I had a very difficult relationship with her and my life had long ago been severed from hers in important ways. So I could take care of her and walk away from it when I was finished with my part, and somebody else took over.

With a mate, your life changes, your friendships change when the person has dementia. You suddenly don't get dinner invitations anymore. The old friends don't call and say, "Hey, the ballet's coming up, shall we plan the series together?"

Q. Is that just because people are uncomfortable being around dementia?

A. It's a combination of things. First of all, it's like a mirror on their future. Secondly, it's very uncomfortable to be around, because someone whom you've known, cared about, and respected is different. It's the same thing that makes it so hard for me to be around it.

Somebody said to me recently, in reference to Hank, "What would you really want?" I want to be able to love him like I used to love him. And she said, "But he isn't the same person." That doesn't mean that I don't take care of him and feel loving feelings for him and great sympathy for what he's going through -- although I actually sometimes think that it's a lot harder on me than on him, because he doesn't always know what he's going through.

In a way, you wind up mourning someone who's still living, which is very odd because you can't just get into the mourning. If the person is gone, everybody gathers around to help you through the mourning. But when he or she isn't gone and you're mourning, all people say is, "Oh, but look how good he is today!"

Q. How is care giving affecting the sandwich generation in particular?

A. It changes the personal dynamics and creates enormous conflict in the family. The adult children worry -- they want to be helpful and also want to be relieved of the burden, and who can blame them? They've got a whole other life they have to be living. And this is burdensome, no matter how much you love your parents.

I tell a story in the book about this woman who was 57. She kept nagging her parents. She would take them from one assisted living center to another, and they always found something wrong -- the rooms were too small, the food wasn't good, the place smelled, the people were too old. She felt like they didn't appreciate her efforts. And when I talked to them, they didn't want her efforts. They wanted her to be nice and be there when they needed her, but otherwise to leave them alone. The father, in particular, was furious with her.

So it's a very delicate balance, and each family has to find that balance. My advice to the children is to know what it is that you're really worried about. If your motivation is mainly to make your life easier so you won't have to worry about them, then that's your problem. If there's something real to worry about, then it becomes a family problem and you step in, but not until there's something real to worry about.

My advice to the parents, if they'll listen, is: Listen to your kids. They're trying to help. It's also true that there may be something selfish about the helping, but you need to have a real conversation about it, not let them drag you from one place to another because you don't know how to stop it, and then you're angry and they're angry, and nothing happens and you have a stalemate.

Q. Do you feel that adult children treat their aging parents in a patronizing fashion?

A. Absolutely! There's an enormous amount of patronizing of the old. Listen, I do it myself. You go into one of these assisted living places and the staff is screaming because if the residents are old, they have to be deaf. And in general, we tend to treat old people with the same lack of respect for their autonomy as we treat babies, but babies can't be autonomous.

Q. In counseling families, what have you found is the biggest emotional difficulty for caregivers?

A. I left my practice before care giving was a real issue, so I can't say that I'm an expert. But I would say it's a combination of things: guilt because you never do enough, and resentment because you're doing too much and you may have kids to send to college and you can barely afford that, let alone the expense of taking care of your parents.

Counseling can be useful if only to give someone a place to be able to say, "I hate it. Right now I hate him or her, I hate my life; this is not what I bargained for." Because I personally guarantee that there's maybe one person in 100 who doesn't have those thoughts -- and that person qualifies for sainthood.

Q. How do you feel about retirement communities versus parents moving in with their children?

A. This is a very big question. The problem is that we live in such an age-graded society. Because we do, in some ways it's better for parents to be around people their own age. On the other hand, it's very limiting. Playing poker or pool is only a little part of life. If we were a less age-graded society and they could do something useful in the world, they'd feel better about their lives. And useful might be living in a community where they are involved with younger people and children, and get pulled into other kinds of activities. But that's not going to happen in the foreseeable future.

As far as whether it's better to live with a child's family or not, it depends on the family. If the woman in the house -- it's almost always the woman, regardless of whether it's his parents or her parents -- is harassed with teenage kids, a part-time job, and an aged parent who is only partly competent or is totally incompetent, I don't know whom it is better for. It may be better for the incompetent parent, but it sure as hell isn't better for that woman. And I don't know if it's better for the kids, because they have a stressed-out mother who wants to get them out of the way so that she can take care of all the other stuff she has to take care of, including changing her mother's diapers or whatever.

Q. What do you want people to get from your book?

A. Well, I can tell you what people are getting from it. People in their 70s and 80s write to me saying they are getting affirmation and truth from the book. Now they're not quite as befuddled by the "80 is the new 60" stuff. They think, "I've always known that's not true, and now somebody else has said it's not." I want them to get that. I want them to have their experience validated rather than adding to the constant flow of words and images that invalidate their experience and make them nuts.

I want young people to hear the message that you'd better be prepared. Life is not going to get any shorter -- they're sitting in their labs working to make us live to 125. But this long life is no gift if you don't have the emotional, intellectual, and financial preparation. I would hope that there is a movement -- I'm not talking about a Gray Panthers movement or any of those silly things -- a movement that is in the streets, if necessary, demanding social and institutional change.

We need communities building themselves with the support of the government, so that people can come together whether they're couples or singles and live in communities. I'm not talking about the kind that cost $75,000 a year. I'm talking about real community living, where people of similar backgrounds can come together. Right now it's almost impossible. There are too many laws that oppose it, in fact. And it's not going to happen unless you do it now.

Q. What was the biggest surprise for you about getting old?

A. I could say small things, like nobody ever told me that your body loses hair -- that your eyebrows suddenly practically disappear. But those are the small things. They're important in the moment that you realize them. The bigger issue is that nobody tells you how to live in old age, how to be old. I don't even know what that means.

I look at people on the bus who are my age or even younger, and many look as if their life is finished. You see them sort of staring blankly and their body moves as if it doesn't really want to respond. And yet I know from everything I know about people and my research that these same people cling to just breathing and would cling to just breathing until their last breath.

I don't feel that way. I feel that I still have things to do, although if I don't do them, that will be OK too. I feel ready to give up life. But as long as I'm living, I can't resign myself to a quiet, passive life.

Q. When you say you are ready to give up life, you mean that you would rather not be alive if you feel that you've stopped really living.

A. I don't have any commitment to staying alive just for the sake of being alive. If I get sick or feel my mental faculties slipping, I want to be free to take my life without interference from the people who love me. I've told my daughter that and, hard as it is for her to hear, I think she understands. She asked only that I promise to tell her when I decide it's time for me to turn out the lights, and in return she promised that she wouldn't try to stop me.

I say this with a certain amount of humility, because I don't know how she'd be if it actually comes to that. And I also know that it's one thing for me to talk this game; it's another thing to do it. Right now Hank needs me, I know Marci would suffer deeply, and I'm fine, so it's not in the cards.

Q. Do you think society is ready to accept this idea?

A. I think people are afraid to feel these things, because it is not acceptable. You can't even say it out loud before somebody says, "Oh, you don't mean that. You would never do that." But I can tell you that in my research, I ran into many people who were in their 80s and above who said, "Life is just too long."

Q. How can society better prepare people to accept death?

A. For one thing, religions have to get into this business of preparing people to die and of turning death from something we have to fight into a part of life. Ministers, rabbis, and priests need to preach not the glory of death, but the inevitability of it, and the acceptance of it -- the fact that it is life. You plant a seed, the flower grows, and then it dies. Life and death are one; they are not separate.

In other societies, they know that death is part of life, just the next phase. But we're fighting it all the time. And, of course, medicine is built on fighting death.

Q. How does Hank feel about life?

A. He's a happy man. He will say, "I'm the luckiest man in the world. I'm so happy -- I've got you, I've got this wonderful life, I live in this wonderful place." And he'll feel that until he takes his last breath.


about 9 years, said...

I'm so glad to find this; my parents feel this way; they talk about how hard it is to be as old as they are but they still want to live their own life; I just came out of caring for my mom post-op hip replacement where some other family members were ready to use it as a time to try to put them somewhere but my son and I got together to try to help them through the post-op time then see how they were and what they wanted; I'm now back home leaving it with them at least for now