Talking With Dudley Clendinen: Canterbury Tales

The author of A Place Called Canterbury talks about what to look for in a nursing home, and how to make the best of a parent's final years.

In 2000, Dudley Clendinen, a reporter and editorial writer for the New York Times and assistant managing editor for the Atlanta Journal-Constitution, set out to write a book about the first generation of Americans who were reaping the benefits of an unprecedented life expectancy. To do so, he became a part-time resident of Canterbury, an upscale, nonprofit retirement residency and nursing care facility in Tampa Bay, Florida, spending more than 400 days and nights there to collect the stories of residents and staff.

Clendinen's compassionate and humorous book, A Place Called Canterbury: Tales of the New Old Age in America, presents a larger-than-life community of residents whose days pass with "dottiness and dignity." For the most part, they make the most of life -- forming friendships, spreading gossip, having tiffs, finding love and sex -- while keenly aware that death is just around the corner. It's a final passage that Clendinen shows requires grace, grit, and courage. Clendinen's portraits of the caregivers and other workers at Canterbury go against the scary stereotypes of nursing home staffs as cold and negligent -- he believes that for those at Canterbury, at least, care giving is a calling.

While collecting these stories, Clendinen was also legal guardian and caregiver to his mother, Bobbie, during her final nine years at Canterbury after debilitating strokes. He struggles with how much of a life is left for his mother, who once "lit up" every room she entered, and how long she would like to live it. Most striking about Clendinen's experience are the elusive and hard-won treasures he mines during his last years with his mother, whose main physical expression becomes grinding her teeth.

It's hard not to compare Clendinen's book with Mary Gordon's Circling My Mother, published last year. Both Clendinen and Gordon had conflicts with their mothers, but Gordon's revulsion toward her mother as she succumbed to dementia propelled her to write a book to recover the woman Anna Gordon once was. Mary Gordon's journey is an anguished one; as the title of her book suggests, she never really finds her mother. Clendinen's journey is anguished too, but in focusing on what remained of his mother during her last years -- not what was missing -- he emerged from the experience at peace.

Q. What did you take from the experience of care giving for your mother?

A. Well, it's not just our parents' experience; it's ours. Most of our parents are loving people. We may question that, we may drive them crazy, and in their later years they drive us crazy the way we did them when we were children and adolescents -- but if we're loving, if we pay attention, then we realize that this new decade at the end of life isn't just their passage; it's ours too.

It's a time of extraordinary opportunity for the kind of intimacy that we haven't had with them probably for 50 years For all its aggravations and uncertainties, and for all that's frightening about it, it can also be an enormously close and funny and very fulfilling time, because it gives the opportunity for us to give back the kind of emotional and psychological support and understanding that they gave us when we were growing up and being difficult and obnoxious.

Q. Your care-giving experience with the older generation actually began years earlier, when you had legal responsibility for your aunts Bessie and Carolyn. What did you learn from that?

A. I suddenly had to make a decision when they partially burned their house down after having just given me power of attorney a month or two before. I had no idea about nursing homes or how to judge them, and I had 24 hours to make a decision. I had to bully the hospital into giving me that 24 hours. The hospital wanted to release them, but you have to stand up and represent the people you're responsible for.

I put them in the closest place I could find that I knew anything about, that would keep them together even though one was able to pay for her bills and the other was immediately on Medicaid. Those aren't necessarily the best reasons. It was for-profit, short staffed, everybody was overworked -- none of the staff had time enough even if they were really good-hearted and wanted to serve. The place was dangerous and neglectful, and they would do things reflexively without asking me.

We don't know when we start this process how to be really effective sons or daughters or guardians. We don't realize how important the caregivers are. It all boils down to whether the budget and management of the place is concerned enough about quality to pay well enough, hire enough caregivers, and supervise them so they know they have good-hearted caregivers who will have the time, freedom, and support to do the right things.

That's the basis of the quality of life -- the number of really compassionate caregivers. Because without that, the lives of the people there are going to be miserable. It's all about the caregivers. But the caregivers are only as good as the management is concerned about quality.

Q. Is Canterbury unusual that way?

A. I think it's unusual. I would much sooner trust a nonprofit institution than a for-profit, because a nonprofit doesn't have to make a profit. The for-profit does, and the quickest way to earn more money is to reduce the number of employees, which means to shrink the number of caregivers. And it's well known that the vast preponderance of cases of neglect and bedsores and all that are in for-profit nursing home chains. The manager at Canterbury is ferociously committed to the quality of the place and really loves older people.

I think it also works because it's only 125 apartments and 60 beds -- small enough for everybody to know one another. It doesn't mean they have to like each other, but they know each other. So people feel almost as if they're part of an extended family, as opposed to in a much larger place, which may be several buildings and people can feel lost.

The one thing the residents at Canterbury all have in common is that they're older than they ever thought they'd be -- they've all reached the point at which they began to feel creaky and they need some kind of care, or safety net. Canterbury gives them that, but it's also a place where they can be active and live vertically -- cocktails, the symphony, films, dinners out, and love affairs if they feel like they can manage that. And then when they cease being competent to manage that, they can move or be moved into the health center, where they will be taken care of for the rest of their lives, even if they run out of money.

Q. It seems that Canterbury also felt like family to you.

A. The thing that's really been striking to me is the extent to which many of us children of people who live there feel drawn into something that feels to us like family. There's a real sense of belonging, particularly for those of us whose parents have moved from the residential tower into the nursing wing, so we may have spent years with each other -- it gets more and more intimate in a communal way. It's very bonding and supportive. It feels very much like a second home to me.

Q. In the book, you wrote that you never felt so alive as when you were there. Could you expand on that?

A. I was amazed and fascinated and captivated by how wonderfully, naturally comedic and dramatic the lives of the people there are. You either feel comfortable with it or you're repelled by it. It's a test of empathy: You tend to see the glass as half empty or half full when you're dealing with someone who's been damaged by a stroke or arthritis or macular degeneration or any of the things that begin to break us down physically and steal our abilities as we get older.

I tend to try to see what's there rather than dwelling on what's gone. If you do that, I think you can be amazed at and inspired by what's there, and also by the courage, grace, ingenuity, and amazingly resilient sense of humor of people who are basically trying to live cheerfully and meaningfully each day when their bodies are saying to most of them, "I don't feel like it."

Q. We think of retirement as a time to relax, but in some ways, people at that age are dealing with the most difficult time of their lives.

A. And doing it with diminished intellectual, physical, and nervous abilities. I admire them greatly, and enjoy them.

Q. At one point, quite a while after your mother's first stroke, a physician's assistant told you that your mother probably hadn't had the intellectual ability to think, comprehend, and remember for years. But you describe moments when she seems to understand everything.

A. Absolutely. One thing I learned from the long years of dealing with Mother is that the perception of who or how much is still there is entirely a personal one. It's really a function of our own abilities to perceive, our empathetic natures or lack of them, and the extent to which we try to communicate and, I guess, project. I know for a certainty that deep into that five-year period that the assistant was speaking of, I could get my mother to react, to laugh at something she would have laughed at when she was intellectually competent. That always told me that she was able to comprehend and process, because humor is a subtle thing and I wasn't necessarily laughing myself when I told her the stories. That was the clearest way I knew that I was still reaching her.

So I always told her stories -- who I was interviewing, how far along I was in the book. And I tried to tell her stories about people she knew, to kind of keep her abreast. I quit telling her about deaths after a while, and I avoided telling her bad news. I'm not sure whether that was the best decision or not, but I thought, "If she is processing all this, why depress her?"

Q. Did your sister have the same experience?

A. No, we were polar opposites. For Melissa, the glass was half empty. The way she expressed it was that the mother she knew wasn't there any more. I understand the feeling -- it's not a matter of right or wrong. It's entirely personal and emotional. You either feel your mother's there or you don't.

Melissa visited Mother a great deal in the first year. Then she found it increasingly difficult, I mean painful, and she quit going for a number of years except for ceremonial sorts of occasions. She just couldn't do it. And I kept telling her, that's all right. We just deal with this as we can. She came back a while later, but this is very hard for people.

Q. How did the people who worked with your mother view her capabilities?

A. Melissa and I might stand at opposite ends of the spectrum, and in between us was a whole range of other people. First, the caregivers, who always felt that the spark was still in Mother. Then the nurses who touched her and were with her less than the caregivers, and then the doctors, who touched her and were with her less than the nurses, and so on. Then the occasional friends who still came -- and they were really pretty occasional because it just pained them so much to see Mother, they didn't know how to do it.

Q. Like most of us, you had issues with your mother, but that changed when you were a caregiver during those last nine years, even though you weren't able to communicate with her very much. How did it change?

A. My mother was never easy company. She was charming, funny, interesting, best in social company because her mission was to light up the room and make sure that everyone felt graced and fed and watered and all that. One on one, she was less fun because she just didn't really know how to relax and be intimate, and so I didn't know how to be that way with her either.

The more elemental the relationship became, the closer I had to come in order to really communicate with her -- and, I think, the more we felt at ease. I was drawn into an intimacy that I otherwise wouldn't have achieved, and I'm very glad for it. I'm still not sure that I could sum up my feelings about my mother for you in a sentence or a paragraph, but I no longer have any issues with her. I'm perfectly comfortable with her.

If you can be a caregiver, I think it makes you a warmer and more humble and understanding person all the rest of your life. I have an almost inexpressible gratitude and admiration for the people who give care. I have learned that they do it because they're drawn to do it, and I just wish we gave them the recognition and the dollar reward that they deserve, because it's something critically important.

Q. You wrote about how the extraordinary care that your mother got at Canterbury allowed her to live longer than she probably would have been able to at home. But you also ask the question, "To what purpose?" In the book, you don't answer that question.

A. You have to ask the question, but you can't answer it. It's not for us to answer. I think people like my mother are a test of the compassionate quality of our systems and the people who work in them. And they also give employment to people, for whom these jobs are surely the choice of their hearts, because they could make more as cosmeticians or toll takers on the highway. You can't argue with the value of that -- both for them and for the person who receives the care.

I do draw some lines. I would not "tube" my mother, or anybody. I don't think you prolong any life simply because you can. I'm against that. The question is then: Where do you draw the line? The place where we currently draw the line is, if they can't swallow, we as families or friends or guardians or power of attorneys have the authority to refuse to feed them by tube if we feel that it would be in accord with the wishes of the person who can't swallow.

My mother ate when she was fed. When she had deteriorated to a certain point, she essentially stopped eating enough to sustain her and she died. She seemed happy to be there until that time. If she had seemed anxious or frustrated or angry through that period of time, I would have tried to figure something out.

I did withdraw her blood pressure medicines when she was in a particularly tortured state, thinking that she would die, hoping in fact that she would die because I thought that she would want that. But the reverse happened. And it was a lesson in the fact that you can't screw with nature beyond a certain point.

Q. In retrospect, do you think you shouldn't have done that?

A. No. I think I should have. I think it was the only moral, responsible thing for me, as her son, knowing what her wishes were -- and in fact, it ended up improving the quality of her life. She was overmedicated with stuff that wasn't working and it was making her uncomfortable. She seemed more settled, more comfortable, and more alert thereafter. Either way, I guess you could say it worked.

Q. Do you have any final advice for caregivers?

A. It's really important for children to sit with their parents if it's at all possible when they see their doctors. My parents' generation was not trained to ask questions. They too frequently don't know how to report how they feel or what their symptoms are or how they've been acting. I don't think we should make assumptions and speak for them, but I do think there are moments when we can try to ask the questions they don't ask and convey the information they don't convey. Doctors make assumptions about old people, and they're not used to having close conversations with them, but they should. They can be made to if we're there.


almost 3 years, said...

A beautiful and inspirational article--as well as helpful--to thoseof us who are Caregivers.

over 6 years, said...

Thank you very much for such a well written and knowledgable piece about ALF.