An essay from Martin Bayne - appeared in Washington Post

A man depicts the often grim atmosphere in assisted living facilities

By Martin Bayne, Published: July 9

Published in the Washington Post - longer version in Health Affairs - a very prominent journal

People my age — I’m now 62 — might go to an assisted living facility every now and then to visit an older family member. But few people in my age group actually live in an assisted living facility. I do.

Eight years ago, in a wheelchair and after nearly a decade of living at home with young-onset Parkinson’s disease, I decided to move into an assisted living facility. I knew what my decision meant. I’d be moving into a place where the average resident was 32 years older than I was, and the average levels of disability, depression, dementia and death were dramatically higher than in the general population.

What I hadn’t calculated was what it’s like to watch a friend — someone you’ve eaten breakfast with every morning for several years — waste away and die. And just as you’re recovering from that friend’s death, another friend begins to waste away. I can say with certainty that the prospect of watching dozens (at my young age, perhaps hundreds) of my friends and neighbors in assisted living die is a sadness beyond words.

Facilitated aging is a way of life for a growing number of Americans, more than a million of whom now live in roughly 40,000 such facilities across the country.

During my first few weeks in one such place, I requested a meeting with senior management. I’ve been both a journalist and a Zen monk in my day, and I like to make sure we all understand one another and communicate well.

‘Their’ facility

The three executives and I met in my room, and the meeting soon turned fractious. I don’t remember exactly what the head of the housing board said, but I challenged it.

“That’s not fair,” I told him. “You get to go home every day at 5 p.m., but this is my home.” He stood up, pointed his finger at me, and roared: “This is NOT your home. You just lease an apartment here like everybody else.”

I realized right then that the residents of “their” assisted living facility, among whom I now numbered, didn’t have a voice. We arrive in this, our new society, suddenly disconnected from our past life, possibly ill, often without the comfort and support of a spouse we’d been married to for decades. We eat meals in a dining room filled with strangers and, for perhaps the first time in a half-century, sleep alone in an unfamiliar bed.

We then can find ourselves silenced by, and subjected to, a top-down management team whose initial goal seems to be to strip us of our autonomy. And it is in this environment that most of us will die.

Something else I soon came to realize was that the administrators who make up the management team play a distinct and dramatically different role from that of the staff members.

Administrators represent the whims of those who own the facility. The staff members — the personal care assistants, the certified nursing assistants and so on — are the heroes for those of us living in a facility. Underpaid, overworked and highly susceptible to work-related injuries, they are the glue that holds together most of this country’s facilities for the aging. And just as we residents live in “their” facility, these staff members work in “their” facility.

Glaring issues

I lived in the first facility for eight years before moving to the one I’m in now, and if you didn’t know anything about assisted living, you’d probably be quite impressed by my current location. It’s remarkably clean and attractive; the food is high-quality and abundant; the lawns are manicured. Operationally, it runs smoothly.

There are, however, a few glaring issues, the foremost being accessibility. Shockingly, many assisted living facilities aren’t completely wheelchair-accessible.

Sure, there are lots of ramps in these facilities, but at every facility I’ve ever visited or lived in, the bathroom sink isn’t wheelchair-accessible. Just try to shave or brush your teeth when the sink is way up there. You can’t.

Where I live now, I’m on the first floor and fortunate enough to have a beautiful outdoor patio — but my wheelchair is too wide to negotiate the doors, so I can’t wheel myself out onto it.

Additionally, spaces that residents would like to have access to don’t exist in most facilities. Mine, for instance, has neither an exercise room nor a nondenominational meeting center for meditation or worship. These might be seemingly small concerns, yet they have an oversize effect on residents’ quality of life, especially when you consider that most of us can’t leave easily or often.

But the real problem isn’t operational or structural. It’s emotional.

Most residents show a calm, even peaceful veneer. 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 months or years of loneliness and isolation. It’s also the result of burying our feelings and emotions about being surrounded by many demented and disabled neighbors and by frequent death.

The story I’m telling here isn’t just mine. It’s one that will resonate with anyone living in an assisted living facility and anyone visiting family or friends there. Were my experience unique, I wouldn’t be motivated to write this essay or to pursue the other few, difficult avenues available to those of us working to improve the lives of residents in assistant living facilities. Assisted living can improve life circumstances for many people and their families. But, as these snapshots of some of my compatriots reveal, these circumstances are never easy.

‘I don’t want to die alone’

Eighty-nine years old, with a failing heart and a beatific smile, the retired librarian approached me one evening after dinner.

“I don’t want to die alone,” she said. “Would you stay with me tonight?”

Sitting in separate reclining chairs in her living room, we settled in for the night.

“She was right,” she said, while sitting there, placing her delicate hand in mine.

“Who was right?”

“The Good Witch.”

“I don’t understand,” I said, concerned about her state of mind.

“There’s no place like home,” she said. And still holding my hand, she fell into a deep sleep, dreaming perhaps of the Good Witch, Dorothy and the Land of Oz. We both slept through the night.

She lived for two weeks more. When the end came, her daughter was at her bedside.

Christmas lunch

On the eighth Christmas I spent as an assisted living resident, I shared my table and a festive lunch of canapes and beef stroganoff with a 96-year-old widow. Our conversation, inevitably, drifted to those former residents who wouldn’t be joining us for the meal — or any meal, for that matter.

She brought up one older man. “One day he just announced that he was no longer going to kidney dialysis; he died a week later. Two weeks after that, his wife died,” she recalled.

“Was his wife also a resident?” I asked.

She nodded. “She chose to die, didn’t she? Why the hell would she want to stay here, alone?” Then she stared into space. For some suddenly living alone in an assisted living facility, a willed death — whether it’s called suicide or not — becomes a rational choice.

Later that afternoon, as I left with my younger sister to join her family for the holiday, I asked myself the same question I’ve asked every year since I was 53 years old, “What in the name of God am I doing in an assisted living facility?” I guess you’d call it an existential, rhetorical question. I know the answer, of course — I can’t take care of myself independently — yet sometimes that reality is just too painful to deal with.

‘He just left me’

At 4 feet 10 inches tall and 80 pounds, the 89-year-old great-grandmother could easily get lost in a crowd. And that’s exactly what she did for the first two months after she arrived. She always managed to find a quiet corner to sit, alone, with the paperback she always carried. One evening, as I sat outside with my camera, trying to get a few good shots in the fading light, she suddenly appeared in my viewfinder.

“Can I take your picture?” I asked.

She seemed to ignore me, her eyes focused intently on her book. Then, seconds later, I heard a voice, not of an 89-year-old, but of a young girl. “Sure,” she said, “go ahead and take my picture.”

And then as night descended, we both sat quietly, absorbed in our own thoughts.

“He just left me,” said the tiny voice in the darkness.

“Who just left you?”

“My son,” she answered. “One day he showed up at my home in Maine. He said we were going to spend a few weeks together at his place in Pennsylvania. Then . . .” Her voice trailed off.

“Then what,” I said softly.

She paused, and took a deep breath. “Then he drove me here and left me.”

I felt as though a great tectonic plate had shifted. “It’s okay,” I finally responded. “You’re among friends now.”

She set her book down, and even in the faint light of the new moon, I could see her smile.


Bayne is the publisher of The Feathered Flounder, a literary journal showcasing the work of people in their 60s and older. This story was excerpted from Narrative Matters in the journal Health Affairs.

The fuller version of the above essay:

http://content.healthaffairs.org/content/31/7/1633.full?nm

Thank you for posting this Josh.

I live in such a "facility".It is grim in some ways,bu also perhaps the right thing to help me face death with equanimity.Still,at the same time,I am thinking of other options-I'm only 64,and have lots of plans.

A very interesting topic and well written.



Best

Ikuko

Former Shasta monk, Martin Bayne, was featured today on the national NPR radio program FRESH AIR:

http://www.npr.org/2012/09/06/160676993/advocate-fights-ambient-despair-in-assisted-living

September 6, 2012 - from NPR's program FRESH AIR:

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."

Web Resources
A Room With A Grim View: The 'Ambient Despair' That Marks Life In Assisted Living
The Voice Of Aging Elders
The Feathered Flounder
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.


Courtesy of Martin Bayne
Martin Bayne was diagnosed with early-onset Parkinson's at 53. He now publishes a literary journal called The Feathered Flounder, featuring writers in their 60s and older.
Interview Highlights

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."

I decided to post an article from the New York Times on co-housing and religious communities here. Marty and I were talking about retirement the other day. He was saying there should be some Buddhist or Buddhist-friendly retirement communities / assisted living facilities now that so many of us are getting older.

This issue has come up before and of course there are many facilities for the aged run by Catholics, Christians and Jews, but for Buddhists, i don't know of any. I guess in some way, a place like Shasta has become a de facto retirement home for those monks - based on a photo i saw awhile ago - everyone looks over 60.

This issue / need has been discussed many times before and I would think that we will see some communities and homes established that are at the very least pro- meditation and holistic living and yoga and new age - in some degree. But what this article below shows is that such places can become complicated. Us human beings have different points of view, stories, expectations. In this case, what does it mean to be a Christian, what does it mean to live in community together, how much agreement is demanded, and so on. On this website alone, so many differing views - such is life.

So I share this story, as a cautionary tale:

September 14, 2012
Soul-Searching in a Christian Community Over Views on How to Live
By MARK OPPENHEIMER

BREMERTON, Wash. — In 2005, John and Linda Parsons decided to downsize. They were each about 50 years old, with two sons nearing college age. The time seemed right to leave their house on Bainbridge Island, near Seattle. They would sacrifice square footage for a lower mortgage.

Browsing the Web, they read about Bartimaeus, a development nearby across Port Orchard Bay. Its literature promised a living style known as “cohousing”: private residences, but with common green areas and a common house, with space for group cooking and dinners, and with decisions made by consensus. Initially, the development was planned for Christians, who would live together and support one another in faith.

The Parsonses are Christians with a quirky streak. When they lived in upstate New York, they worshiped at a charismatic church founded by “Jesus People,” the countercultural movement born in the late 1960s. After moving to Washington, they shopped around, spiritually, from a Quaker meeting to a Presbyterian congregation to various churches in people’s living rooms.

“For a greater part of our lives together, we have been searching for genuine spiritual connection — which is a lot easier with individuals than with groups,” Mr. Parsons said.

So he and his wife met several times with Bartimaeus’s founding visionaries, about five couples who had conceived the community in 2002. In December 2006, the Parsonses moved into their town house, one of the community’s 25 homes, hoping to find people who identified as Christians but tolerated many versions of Christianity.

But their optimism soon faded. In 2009, they moved back to Bainbridge Island, and now their experience offers a testament to the double difficulties of Christian cohousing: how hard it is for Christians to live together, how hard it is for cohousing to succeed. With the arguable exception of Bartimaeus, out of 110 cohousing communities in the country, according to the Joani Blank of the Cohousing Association of the United States, “none of them is religious.”

Interviews with Mr. and Ms. Parsons and eight current or former residents, as well as a review of a fair-housing complaint filed by the Parsonses and recently dismissed, clarify but also complicate the community’s history. On seven acres, bounded by a salmon-spawning creek, it has proved to be the place where some people will happily live out their years. A much smaller group abandoned the community in despair.

Bartimaeus — named for a blind man cured by Jesus in the New Testament — was formed in 2002 as a limited liability corporation. An early flier described a community whose members would be “biblically orthodox” and would live in a permanent setting where “the Holy Spirit can bring people.”

But when almost nobody responded to the vision, “I said ‘Look, we have a choice: keep the standard as it is, and not build our community, or drop our standard and build our community,” said Nancy Conrad, an early member. “I was surprised they all said, ‘Let’s drop our standard.’ ”

Not everyone had to be an Orthodox Christian, but everyone had to respect Christianity. There would be no religious discrimination in housing sales to meet fair housing law. The condominium association was formally constituted under the name Meadow Wood, and Bartimaeus, as developer of the housing site, would become the name of a voluntary community that happened to reside and meet there. Meadow Wood homeowners could choose whether to participate in Bartimaeus activities.

But Mr. and Ms. Parsons came to believe that this new, less religious vision was a pretext to get people to buy condominiums.

“Things changed as soon as we moved in,” according to their fair-housing complaint. “Founding members established a religious structure for community life, including daily prayer hours, a spiritual discussion group, Greek classes, nightly prayer group, and monthly Taizé services.” (Taizé is a style of musical worship.) While attendance was never required, Mr. and Ms. Parsons say that residents were pressured to attend Bartimaeus events and scorned if they refused and that the community “imposed their religious beliefs and practices.”

Throughout 2007, Mr. and Ms. Parsons say, there were other instances of a religiously hostile environment. There was a public denunciation, they say, of a member believed to be sinful. Some residents protested that regardless of the legal questions, they were uncomfortable with conservative Christian language on the Web site, for instance the assertion that “the family, celibate singleness, and faithful heterosexual marriage are God’s ideal.” Some members complained, too, that such language depressed their property values by driving away potential buyers.

According to minutes of a Meadow Wood homeowners’ meeting from 2009, Guy Coe, among the founding members, defended that language, which has since disappeared. “Actually, it is my theological conviction that heterosexual marriage is God’s ideal,” Mr. Coe said, according to a transcript of the meeting. “If that scares someone off, I can’t do anything about that.”

Giving a tour of Meadow Wood in mid-August, Mr. Coe and another founder, Joel Adamson, were gracious hosts, proud to show off the fire pit where residents gather for frequent sing-alongs, and the small treehouse that can be reached only by a rope bridge. A teenager lazed on a porch, listening to Whitney Houston’s music. It seemed like an edenic place to grow up.

And they made only the scantiest mention of any history of disputation. “There’s no mention of Bartimaeus on the Meadow Wood Web site,” Mr. Coe said. “The people worried about the fair-housing issue, they want it that way. For those of us who don’t think it’s an issue, we think it’s a disclosure issue — people should know.”

Jim Jewett, now 66, said he also left Meadow Wood dissatisfied. He moved from Nashville to Meadow Wood in 2007 because he wanted to be around more children in his old age. Four years later, he said, he had what he called “a psychotic break,” brought on by the pressure of living there.

“Unfortunately, I believed them when they said all the activities were optional,” Mr. Jewett said. “They aren’t. You’re shunned if you don’t participate in things.” He mentioned the Tuesday night group dinners, which Bartimaeus members open with a prayer.

On the other hand, Kay Wilson Fisk, another member, said, “There are prayer meetings in the common house most evenings, and some people go to them, most people don’t.”

Although Ms. Conrad and her husband were among the community’s founders, they no longer consider themselves Bartimaeus members. Since 2002, they have moved from evangelical Christianity to the Russian Orthodox Church. But she still prays with other women from the condominiums weekly, she said.

“Now we are unified,” Ms. Conrad exclaimed on the telephone. “It’s a happy neighborhood. Our house, in particular, is like living on a ‘Seinfeld’ set — people coming and entering.”

On Aug. 28, Mr. and Ms. Parsons received a letter from the Department of Housing and Urban Development stating that, as Christians, they have no standing to file a discrimination claim against the Bartimaeus Christians.

It is a striking oversimplification, of course: whatever the merits of their complaint it surely is logically possible for one group of Christians to oppress a very different group of Christians.

In 2011, Mr. Adamson sent a conciliatory e-mail to John Parsons. He hinted that perhaps Bartimaeus would have functioned better as an explicitly religious organization, like a church, which would have granted members more leeway in whom they chose to live with, than as a condo model.

“I apologize for my part in not looking deeper into this issue six years ago,” Mr. Adamson wrote.

Hi Josh

Interesting post.I live in an "assisted facility".

It isn't Buddhist or religious in any way,but it is fairly benign and comfortable.It is close to "monastic" ,if you choose to look at it that way,so it suits me because I like meditating,and no-one interferes with my meditation.

I have been thinking about a practical approach to some of the issues we discuss here,and have come up with the following:

I am mapping out a template "Voluntary Code of Conduct" for retreat centres temples etc.

My idea is that a potential retreatant,resident,etc.,could use the Code as part of their investigation into the propriety (or do I mean probity?)of the organisation.ie,they ask the organisation if they will honour the Code

It could also be offered direct to organisations.The temple,retreat centre etc., could advertise their participation in the Code as proof of their accountable good practice.

I have in mind the Good Practice Guidelines used in clinical contexts ,by G.Ps,M.Ds,accredited psychotherapists, alternative therapists ,the codes referred to by Education Authorities ,Local and National Government etc.I am sure you get my drift.

One way the ethos of such a code is summed up in the caring professions in the UK is that the host provider has a "Duty of Care" towards the client,service user etc.

I will post a draft of the Code when I have something coherent.I will probably copy from an existing template,such as BACP professional guidelines,and modify to fit meditation groups and retreats.

We have three simple rules/guidelines for our lay retreats

1) We ask people to behave so as to support their own and others' meditation

2) We ask people not to drink alcohol

3) We ask people not to eat meat.

Like the Human Right to live without Harrassment,the first guideline covers a lot of bases-although experience teaches me it is good to be specific and detailed when you write these things.

I just thought about the Bendowa there-Dogen was specific wasn't he,in his rules for the monastic sangha......

Ikuko (as maisie field)

Ikuko,I may have missed some of your posts.

I would like to know why you live in an assisted facility.

I hope you will tell me

Hi Chisan



I haven't posted about living in an old peoples home /assisted facility .It isn't all that interesting.

I am 64,so I qualified in terms of age,there was a vacant bed- sit in the place at a rent I could afford,so I moved in.

It is quite pleasant in some ways.My neighbours are very old,mostly,and I have much to learn from them.

good wishes



Ikuko(as maisie field)

Hi Ikuko
You have not indeed written about your life ...your struggles... where you are now
it would be interesting to hear how you are coping. You clearly want to keep up your practice in your own new surroundings,and it must be challenging but equally rewarding,it would be good to hear snippits
I think everything and everybodys life is interesting after living on a 6ft mat in a sodo.

Such action and
Most unpretentious work all foolish seem
And dull but those who practise thus this law
Continually shall, in all worlds, be
Called Lord of Lords unto eternity

Take care Ikuko