Thu September 6, 2012
Advocate Fights 'Ambient Despair' In Assisted Living
Originally published on Fri September 7, 2012 12:31 pm
Martin Bayne entered an assisted living facility at 53 after he was diagnosed with young-onset Parkinson's disease. The disease affected his nerves so severely, it was impossible for him to take a shower and get dressed by himself.
"When I was in my 40s, I was physically fit and very active," Bayne tells Fresh Air's Terry Gross. "And to have to give all that up and stay in a wheelchair now and be helped by so many people to do the simplest of things — it takes a little getting used to."
That was 10 years ago. Bayne has gotten used to getting help in the assisted living facility in Pennsylvania's Lehigh Valley. He says it allows him to manage his illness and maintain a good quality of life.
But Bayne is unlike most residents in assisted living facilities. They're often in their 80s and 90s, and move in typically after a traumatic event, Bayne says.
"They just lost a spouse, they have some terrible disease, or they're in a stage of dementia where they can't live by themselves," he says. "And it can be frightening for people at that age to come in and all of a sudden have to deal with all this foreign, new stuff."
Bayne calls himself an observer-advocate and writes about long-term care reform for the elderly. He has covered the operational issues of some assisted living facilities, including wheelchair inaccessibility and what he described in Health Affairs and later the The Washington Post as "a top-down management team whose initial goal seems to be to strip us of our autonomy."
In that article, Bayne noted that the real problem residents face in assisted living facilities is coping emotionally.
"Most residents show a calm, even peaceful veneer," he wrote. "But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in assisted living. It's the result of years of loneliness and isolation."
Bayne tells Gross that he makes it a point to introduce himself to new residents in the facility and even conducts video interviews with some of them.
"I love the community I'm in; it is my home," he says. "And the people there — no matter how demented or how sick or whatever wrong with them — I feel that [it's] my responsibility to make their journey while still on this planet as joyous and fulfilling as possible."
A former journalist and Zen monk, Bayne now publishes a literary journal called The Feathered Flounder, featuring writers in their 60s and older.
On false advertising
"The truth is, in the facility I am in, the administration [is] by and large wonderful people — wonderful people — but in many facilities they are not, and they have a top-down management system, which starts obviously with the owners, or stockholders, whichever the case may be, and they try and make you as compliant as possible, as quickly as possible. They don't need any revolutions. They want to put on a good face for the public. I was driving with someone else about a mile away from where I live and I saw an ad, a large ad, for my facility and there was a couple dancing [in it]. And I said to myself, 'If I stood outside my room for five years, I would never see a couple dancing in my facility.' "
On societal perceptions of the elderly
"We as a society have begun to think of what our elders are capable of as merely pinochle and dancing and bingo — and that's such a waste of humanity. It really is. I mean, that's sadder in my opinion than cases of neglect that you see in facilities. To see someone who is, or was, a doctorate — had a doctorate — or was a high-level professional or was just good at what they did, could have been a cabinetmaker, and then to see them lose that edge, to see them stop and become what I call elder zombies. It's very sad, very sad."
On recording people's final days
"I try and get people on video as soon as possible because you never know how long they're going to be here, and video has never let me down. It's wonderful. I just set my camera up on a tripod, I invite people in to sit with me and talk for half an hour about anything that's on their mind. ...
"It's almost like the most intimate form of communication that I can think of, and it allows me to sit there with a person, and for a few moments we just let our guards down. ...
"I find that people that I've never talked before in that way all of a sudden open, and your life spills out in front of me and I'm moved often to tears myself. One of the first things I do when someone's died is show the video to their children. I still keep them, but I always show it to the family if I do have a video of the deceased."
On how death is handled in assisted living facilities
"This is a factor of which facility you're in, but I would say it's fair to say that on the whole, death is handled very poorly, very badly. And I think that setting up a time and a place to honor the person who's just died not only completes their life but, in a way, brings a sense of joy and release into your life, and it gives you a sense — I think for everyone — that life is purposeful and that we have to acknowledge [death], not hide [it] under the rug. Death is also an integral part of who we are as human beings, and I think to talk about it openly, while in a way celebrating the lives of the deceased, I think is very helpful."
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. Most people in their 50s who have been to an assisted living facility have been there to visit parents, aunts and uncles, but my guest Martin Bayne was in his 50s when he had to move into an assisted living facility, eight years ago, no longer able to care for himself because of young-onset Parkinson's disease.
He was 32 years younger than the average resident. In an article published in Health Affairs and excerpted in the Washington Post, Bayne wrote about living in an environment of disability, depression, dementia and death. He's able to describe life in such a facility in a way that many residents no longer have the capacity to do.
Bayne has worked as a journalist, lived for several years in a Zen monastery and sold long-term health insurance. Now, though, he sometimes barely has the ability to type. He shares his observations of life in assisted living in his blog The Voice of Aging Boomers. And he publishes an online literary journal called The Feathered Flounder, which showcases the work of writers in their 60s and older.
Martin Bayne, welcome to FRESH AIR. So just on a practical level, now, in your life, what are the things that you can no longer do for yourself that require the assistance that you get at the assisted living facility?
MARTIN BAYNE: I'm tempted to say everything. My mobility is not good, Terry, and I need help taking a shower or getting dressed. When I was in my 40s, I was physically fit and very active, and to have to give all that up and stay in a wheelchair now and be helped by so many people to do the simplest of things, it takes a little getting used to.
There were some periods of frustration I had years ago, but I think I've got it under control now.
GROSS: So you were in your 50s, you were about 52.
GROSS: And you were there because you have Parkinson's.
GROSS: The other people in there were in their mostly 70s, 80s and 90s?
BAYNE: Eighties and 90s, yeah. Seventies is still pretty rare to find someone that young.
GROSS: So that's something right there. Like, you're not only prematurely for your age in an assisted living facility, you're with people of another generation.
BAYNE: That's right.
GROSS: And people who have probably - many of them probably had some form of dementia, not full-blown Alzheimer's but some kind of memory impairment.
BAYNE: That's true to say, yeah. It's what I call ambient despair, and that is the recognition that your fellow residents have such high levels of disability, dementia, death, and it becomes a part of your I think subconscious, and yeah, it - it's tough when you're living with - I live with about 70 other residents, and the residents have such a high frequency of dementia, death. Two died last week, and it was a shocker.
I have no one my own age, with the exception of one fellow, to talk to, and he is - it's a joy to be able to talk to him because he's intelligent, he's articulate, he likes model airplanes and...
GROSS: Why is he there?
BAYNE: I don't know. There had been another fellow I just remembered, and it's funny how I discount him when I'm talking about residents, but he was a sophomore in college and got a full scholarship for basketball. He's a big, tall, wonderful guy. And a drunk driver hit him, and he was in a coma, I believe, for four months.
And since then, which has been, what, 30-some years, he's been living in facilities.
GROSS: One of the reasons why I wanted to talk with you about this, is because I think, you know, many people have family members who are in assisted living facilities. They visit the family member in the facility, and then they go home. And often by the time your family member's in assisted living, either they're not able to be a very good reporter about what's going on there, or you can dismiss it as oh, mom's depressed, dad's depressed, this is the best thing for them.
But you're almost acting like a reporter, being there, and bringing the outside world, the story of what it's like for you, and the story of what your observations are of other people who are there.
BAYNE: I call it an observer advocate.
GROSS: So let's start with some of the issues that I know have really gotten to you. Like you've talked - you've written about like the loss of control and identity when you enter an assisted living facility. I mean, on the bright side, you've got aides there, you've got somebody - you've got people making your meals and cleaning your room. Those are no longer your responsibilities. But you write about the loss of control and identity. Talk about that a little bit.
BAYNE: The loss of control, I have to be very careful, because I'm walking a fine line here, because the truth is, in the facility that I'm in, the administration, by and large, are wonderful people, wonderful people. But in many facilities, they're not. And they have a top-down management system, which starts, obviously, with the owners, or stockholders whichever the case may be. And they try and make you as compliant as possible as quickly as possible.
They don't need any revolutions. They want to put out a good face for the public. I was driving with someone else about a mile from where I live, and they saw an ad - a large ad for my facility - and there was a couple dancing. And I said to myself, you know, if I stood outside my room for five years, I would never see a couple dancing in my facility.
But that's not what upset me so much. What upset me was the fact that we as a society have begun to think of what our elders are capable of as merely pinochle and dancing and bingo. And that's such a waste of humanity. It really is. I mean, that's sadder, in my opinion, than cases of neglect that you see in facilities.
To see someone who is or was a doctorate, had a doctorate, or was a high-level professional or just was good at what they did - they could have been a cabinetmaker. And then to see them lose that edge, to see them stop and become what I call elder zombies, it's very sad, very sad.
GROSS: So do you socialize much with the people who also live in the assisted living facility?
BAYNE: As much as possible. I try and sit down and play the myriad card games, many of whom - whose names I don't even know. But it's not because I want to play cards; it's because I want to be around these people. So yes, the answer is as much as possible, sure.
GROSS: Is it hard when somebody comes in, and they're, say, you know, in their late 80s; some of their memories have faded; it's been years since they were active in their profession, if they had one; their spouse might have died; children living far away. And so they have this, like, long life with a lot of history that you're probably never going to know, or a lot of it you're not going to know. You're meeting somebody late in their life and knowing just, like, the tip of who they are and trying, you know, trying to encounter them as a full person but not knowing so much about their past.
BAYNE: That's where video comes in. I find video extraordinarily helpful in that respect. I try and get people on video as soon as possible because you never know how long they're going to be here, and video's never let me down. It's wonderful.
GROSS: How do you use it?
BAYNE: I just set my camera up on a tripod, and I invite people in to sit down with me and talk for half an hour about anything that's on their mind. And I had a fellow in the other night that was weeping during a discussion of his role in a Navy disaster, where one ship had hit another, and a number of men died.
For me, video is a very personal thing. It's almost like the most intimate form of communication that I can think of. And it allows me to sit there with the person, and for a few moments, we just let our guards down.
GROSS: Oh so you - I think I get what you're saying: You're there as an interviewer, and that gives you, as I feel I often have when I'm at the microphone, the liberty of asking anything without feeling like you're being presumptuous.
BAYNE: Exactly or intruding.
GROSS: Or intruding, yeah.
BAYNE: Right, that's right. And I find that people that I've never talked to before in that way all of a sudden open, and their life spills out in front of me, and I am moved, often, to tears myself.
GROSS: And what do you do with the video?
BAYNE: One of the first things I do if someone's died, is show them the video, to their children. I still keep them, but I always show it to the family if I do have the video of the deceased to share.
GROSS: My guest is Martin Bayne. He's now 62 and lives in an assisted living facility because of Parkinson's disease. More after a break; this is FRESH AIR.
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GROSS: My guest is Martin Bayne. He's 62 and lives in an assisted living facility because of Parkinson's disease, which has left him unable to care for himself. He blogs about life in assisted living and wrote an article for Health Affairs that was excerpted in the Washington Post.
You've witnessed a lot of deaths. Is death talked about? I know someone was telling me, who lived in an assisted living facility, that one of the things that really bothered them is that everybody there knew that death was either just a little down the road or a few years away, but it was close. But no one talked about it, and when somebody did die that the administration didn't say anything, that you'd notice somebody wasn't at the dining room table the next day, that the room was empty, people were coming in to look at it, but nobody had said that the person had died or what they died off. It was almost as if it would be too depressing to mention it, so they didn't want to bother the other residents with it.
GROSS: What's your experience of that? How is death handled?
BAYNE: Well again, this is a factor of which facility you're in. But I would say it's fair to say that on the whole, death is handled very poorly and very badly. And I think that setting up a time and a place to honor the person who has just died, not only completes their life but in a way brings a sense of even joy and releasing (unintelligible) life. And it gives you a sense, I think, for everyone, that life is purposeful and that we have to acknowledge, not hide under the rug. A death is also an integral part of who we are as human beings.
And I think to talk about it openly, while in a way celebrating the lives of the deceased, I think is very helpful.
GROSS: How has it made you feel about death to be so surrounded by it because the people who you live with are so old that, I mean, even if they weren't sick, you would have witnessed many of them died because you're talking about people in their 80s and 90s.
BAYNE: Right. It has dramatically, and I feel now much more relaxed about my own death than I did before. My relationship with almost all the residents is such that many of the people who die, typically die slowly. I mean, there are some sudden deaths, but it's a slower process, generally, and I'm allowed to kind of take part of it.
This woman that died last week, I went into her room that night and sat with her, holding her hand, and she died the next morning while her son was by her bedside. And I talked to her son and gave her son a hug, and I'm much more - I guess relaxed is a word I have to use again, about my own death. When it comes, it comes. And whatever happens happens.
I'm told that 100 billion people have died up to this point in time on our planet, and none of them have come back to complain, and so it can't be that bad.
GROSS: So how did you become the person who goes in and holds the hand of the person who's dying?
BAYNE: Because I wanted to. I wanted to be there, and people know it. I make an attempt when anybody new comes into the building to introduce myself to them immediately. And when people are coming to an assisted living facility, it's typically after a trauma in their life: They just lost a spouse; they have some terrible disease; or they're in a stage of dementia where they can't live by themselves.
And it can be frightening for people at that age to come in and all of a sudden have to deal with all this foreign, new stuff. So I make it a point to go right up and introduce myself. And I think that my philosophy that it's the small things in life, the very small things, that mean the most. That too has given me a certain position, if you want, in the community.
And I think my age, too, people just kind of scratch their heads and look at me sometimes. But I love the community I'm in. It is my home, and the people there, no matter how demented or how sick, or whatever wrong with them, I feel that my responsibility to make their journey while still on this planet as joyous and fulfilling as possible.
GROSS: So something about your background that I'd like to bring up, you spent five years, I think, living in a Buddhist monastery on the West Coast.
BAYNE: Close, four or five years, yeah.
GROSS: Four or five years. And were you in a Jesuit monastery for a time, too?
BAYNE: I was in a Benedictine Catholic monastery for a year.
GROSS: Oh, for a year.
BAYNE: For a year, yeah.
GROSS: So I'm wondering if the things that you learned there about meditation, contemplation, are helping you at this stage of your life and helping you live in an assisted living facility, in an atmosphere that some people might find very depressing, you know, because people are so much older than you are and so much, you know, closer to death and often more seriously impaired - and so on.
BAYNE: You know, the Buddha said - I wasn't there obviously to hear him, but I'm told he said that life isn't permanent. And the time that I spent as a monk in both monasteries was without a doubt the most productive, powerful period of my life. And I owe, I believe, everything to the training that I received in both monasteries.
Zen is not that far from Catholicism. I was at the Benedictine monastery, and they encourage their monks to be rather eclectic when it comes to religious beliefs. They're obviously Christian. But one of the monks had built a small Japanese tea ceremony room. And I was reading a book one day from - it was in the room. And it said the Buddha had learned how to turn the stream of compassion within.
And I dropped to my knees and started to weep. It never occurred to me that one could turn the stream of compassion within. Sometime later I was on a plane to California to the Buddhist monastery to try and find out how does one do this. How does one love themselves? How does one give oneself the benefit of the doubt?
GROSS: How does one give to oneself the compassion that would come naturally when it came to caring for other people.
BAYNE: Exactly because in my experience, Terry, this is all in a mirror, and how you treat yourself and how you treat other people is identical, identical. The love and affection that you have for other people is only as much as you can afford for yourself. It was like a homecoming. I had forgiven myself, Terry, of all the things that I had done that I didn't think I should have done, of all the things I wasn't I thought I should be. I accepted them.
And when that happened, it's indescribable, really, that something so simple as accepting yourself, turning the stream of compassion within, yet it's such a powerful gift. And not to just myself but to all those now I come in contact with.
GROSS: Well, it's really been good to talk with you. I appreciate you making the trip to a radio studio so we could speak over microphones to each other so that the audience can hear you well. Thank you so much. Thank you for talking with us.
BAYNE: Terry, it was my pleasure.
GROSS: Martin Bayne is a resident of an assisted living facility because of Parkinson's disease. He wrote an article about life there in Health Affairs, which was excerpted in the Washington Post. You'll find a link to both, as well as a link to his new blog, and his literary journal on our website freshair.npr.org. I'm Terry Gross, and this is FRESH AIR. Transcript provided by NPR, Copyright National Public Radio.