Hello Martin,I heard your interview the other day on the radio. I had to pull the car over to believe it was real.
My thoughts, my torn caregivers soul, and my heart…all there on the radio coming through your eloquent sincerity.What a relief – you spoke what I had witnessed and what toxified my entire being for 12 long years until my mom died, and even now. Read more →
Cheryl Sadeghee writes to say:
Over this past year, I have been working as a consultant in local nursing facilities, providing supportive and therapeutic interventions for their residents identified as suffering with various mood disorders or reported to have disruptive behaviors. I love working with this population and have found it to be more of a vocation than an occupation. Read more →
THE INTERVIEW — podcast
thank you for the interview with martin bayne. i was moved to tears. in the simplest of words he made all of this life make sense.. what a remarkable wonderful man!
Name: jeanne keenan
Email: thecostumecompany@verizon.net
Oh Terry; i am weeping. martin bayne’s story touched me so very deeply. this program was one of those “sit in the car and listen to the end” stories. in the late 1990s and early 2000s, my sister, jacki and i, experienced this. our parents had to move to assisted living when our mother’s alzheimer’s became too much for dad, who had been diagnosed with parkinson’s and later, with alzheimer’s/parkinson’s dementia. they lived together, then as she worsened, separately at the same facility. my sister and i often commented on how strange the nursing home “culture” appeared to us, and worried about the incredible changes our parents experienced after living in their own home for decades. even tho the nursing home/assisted living center was in our hometown, and even tho (some of) their friends on the “outside” came to visit. mr. bayne’s perspective on how death is not handled in these places rings true with respect to what my sister and i saw and heard in a very few brief comments our father made inadvertently. it seemed like the residents kept these issues inside the “fold,” and very very rarely shared their thoughts with us non-residents. His exquisite reflections, informed by his spiritual journey, provide additional perspective and meaning for us regarding the essay we prepared upon dad’s death, part of a service award nomination packet we prepared for the woman who was his aide. in the award ceremony, they read our essay. it let everyone acknowledge his death as well as her service. it’s the gift of significance, that mr. bayne was describing. i had never thought about this other function the essay/ the award ceremony could serve. until now. thank you so much. fresh air is just the best. how can i get a transcript of this interview? sincerely, gwynn henderson
Name: gwynn henderson
Email: aghend2@uky.edu
Susan Gray (SusanConwayGray) wrote:
I’m a first time listener and loved this interview! It was like listening to a beautiful flower unfold. Terry started with slow thoughtful questions for Mr. Bayne and his responses seemed to be get deeper and more stunning, until he discussed how compassion is the mindset he lives by and uses with those he lives with. This made my heart melt as I grapple with putting my older brother into a care center. He’s in his 50′s, developmentally disabled and bi-polar, and can no longer care for properly for himself. Plus he is in danger of harm from the larger outside community as he wanders like a wild man in the worst areas all hours of the day and night in the worst weather unproperly clothed. But I worry he will be “zombied out” by drugs and made to comply while he loses his freedom and he will run away. But this interview gave me great hope that he will find a good place filled with compassionate hearts to keep him safe but let him live his life. Thank you Terry for a terrific interview and Mr. Bayne for his profound insights into the human spirit.
Judith Wahl (Wahlbangers) wrote:
Thank you for this moving interview Mr. Bayne, and for your article and blog. I admire your “antidote” and your advocacy. We can all advocate for positive changes in healthcare and long-term care policies, but we cannot wait to take action… so my husband and I do what we can every day to improve the quality of life for residents of nursing homes and assisted living facilities.
We are the founders of Wahlbangers Drum Circle Organization, a Nonprofit dedicated to improving the quality of life for seniors through the joy and health benefits of recreational/therapeutic group drumming. We facilitate drum circles at many locations throughout California, and the residents love this activity! We provide drums which are accessible at all levels of ability, so within the drum circle everyone plays and everyone is equal. For at least an hour, the participants have their own identity within a social and communal setting. Please see www.wahlbangersdrumcircle.org for more information.
We are told time after time by Activities Directors that they would love to invite us to come every week, but they have nothing in their budget for our activity. We recently took a drum circle to an upscale assisted living facility, free of charge. The 25 residents in attendance had a wonderful time drumming, and many told us that they were delighted that they did not have to attend the other planned activity — making tissue paper flowers! The residents there pay an estimated $6,000 a month, and they are relegated to tissue paper flowers as an activity? They need a revolution! The “top-down management” never attends the drum circles. Our altruistic vision is that just once, one of the suits will attend a drum circle and see the joy and vibrancy in the participants’ faces – and just maybe find enough love and compassion to have his life forever changed.
Martin Jimenez (MartinJim) wrote:
As a geriatrician, I thought of myself as fairly knowledgeable about care facilities and the things that affect quality of life in them. I’ve taken care of many residents of ALFs. However, I found Terry Gross’s interview with Martin Bayne eye-opening. The psychic impact being witness to the decline and death of fellow residents was something I did not have a grasp of until I heard this interview. Thank you!
Jane Schultz (JaneCSchultz) wrote:
This is the first time I have ever been moved to comment. Thank you to Martin Bayne and Terry Gross for such an amazing exchange. I was so touched by Mr. Bayne, not just for what he revealed about life in an assisted living facility, but for revealing his own tenderness, kindness, and humanity. Mr. Bayne, you are amazing. I first listened to this interview in the car with my 9 year old. She and I sat in the driveway until the interview ended because we were both so engrossed. During dinner we listened again, with my 18 year old daughter present. We were all touched so deeply by the sentiments expressed by Mr. Bayne. The way Mr. Bayne connects with the people in his assisted living facility shows his own full involvement with life. Luckily, all the people he is in contact with benefit from this full involvement. What else are we here for except to fully live our lives as best as we can with compassion and tenderness? As his says, this compassion and tenderness must be directed toward ourselves as much as it is to others. I haven’t had a direct, felt experience of this to date, however I will now allow this into my life because I can see from his example how it is light years away from being selfish.
Sarah Campana (sarahcamp) wrote:
Thank you so much for the interview. Mr. Bayne does a remarkable service for his fellow residents and for the elderly in general. I am a Geriatric Nurse Practitioner and I love my elderly patients. When I look at them I see who they were, they youthful pilot, the young farmer with big dreams. Mr. Bayne conveys this and I only wish there were more people who could be such a lovely and wonderful spokesperson and archivist of our lives. We will all be older one day…it is inevitable, we will also one day die. We are born dying and that is not sad, it is a fact and should not be considered something to fight againtst. I so agree with his note of not acknowledging the death of another resident. They should have some service, mention what have you to note their passing. When I worked in hospice as an RN, our social worker or chaplain set a time for a very brief, memorial; for lack of a better word to allow whomever wished to say words or just be present to acknowledge the persons life. Getting older is a privalge and it is denied to many. Again, Mr. Bayne, thank you for what you do. I wish you were not stricken so young, but am amazed at what you do. Love the older people, they have knowledge, wisdom and deserve respect.
Theresa Waldron (kennethsmom) wrote:
I work as a caregiver (CNA) in an assisted living facility. The people (rightly) complain about the lack of activities or that they are childish and not age-appropriate. (Coloring with crayons is considered “arts and crafts,” for example.) They also complain about the way they are treated by staff, who are condescending and patronizing, and who can be quite rude and disrespectful to residents. Residents often dislike the food at the facility as well, which resembles lowly cafeteria food. For this they pay thousands of dollars a month. I never, ever want to live in one of these places, although with what they pay me, I could never afford it anyway. I think families could visit more often, too, and that would help. But they feel guilty for putting the person there, and if they are demented, they don’t want to have to deal with the changes in the person. Dementia really is not dealt with, by residents, staff, or family. It’s the elephant in the room. It seems people either overreact to people with dementia, or ignore them. It would be better to acknowledge it is there and find new ways of dealing with the person. I’d like to see a concentrated effort made to treat these people with dignity as they live out the end of their lives.
robyn kochan (kindredpup) wrote:
Thank you for addressing this greatly misunderstood and often avoided issue. The regard we have for our elders in the US is tragic. Too many assisted living facilities are substandard places offering food that is not nutritional, activities that do not engage the mind, and rules and regulations for the convenience of staff and administration. Costs are exhorbitant and quality of “life” is poor. More than assisted “living,” many places are assisted “stagnation.” The concept of how we care for our aged (and those who are younger like Mr. Bayne but need assistance) needs to be dramatically revamped. Not only must we realize that just because someone is a particular age, it does not automatically mean they are incapable, but we must treat persons with true dignity and recognize the many talents and gifts they still have. The more we make them give up so we can “assist” them, the more we rob them of their dignity and starve them of life. Thank you for opening the door to shed some light on this sensitive subject that no one wants to talk about but must. Everyone should be required to make a surprise visit to an assisted living facility and have a meal there. They would probably leave running. What a disgrace for humanity.
Joe Montani (Tennen) wrote:
Wonderful interview; thank you, Mr. Bayne, and thank you, Terry. Hearing the quote from the Buddha Shakyamuni about “turning the stream of compassion within” must indeed have been powerful, but I believe that this hearing was preceded by deep practice on Mr. Bayne’s part, and Mr. Bayne was in a state of readiness to open naturally to its wisdom. It’s not usually just a matter of luck. But the members of Mr. Bayne’s community are truly fortunate to have such a Bodhisattva — a Comapassion-Being, a Wisdom-Being — in their midst, and as their friend. I, too, as a far-flung radio-listener in the desert, am fortunate hereby to be a part of his community as well. Again, thank you both, and thank you All.
Relax said the Night Man
We are programmed to receive
You can check out any time you’ld like
But you can never leave
–Hotel California
We’ve all seen them.
Those slick, liquid crystal display billboard ads for assisted living. You know the ones — an attractive couple in their late sixties or early seventies strolling along a stretch of beach, or coming off the links after an invigorating afternoon of golf.
And Baby Boomers eat this stuff up.
When Mom’s Alzheimer’s turns a critical corner, and it’s time to make some tough decisions, somewhere in their subconscious mind they see the picture of the smart-looking couple standing by the golf cart and think, Everything will be just fine. Besides, Mom has always wanted to learn how to golf.
That’s what assisted living facilities pay PR firms for. . . I call it Subconscious Engineering.
And it’s all “fiction” (“lie” is the more accurate term, but I can live with fiction).
Here’s the truth. Assisted living – as the name implies – is a series of services provided to those individuals who can no longer provide them for themselves. Dressing, bathing, eating, toileting are examples of the type of services I’m talking about. Sometimes the services are provided because of frail aging, other times it might be ALS, Parkinson’s or a bad car accident.
Now, ask yourself, How many people with this kind of medical-needs profile are regularly out on the golf course?
Now the interesting part. . . the subconscious mind can’t distinguish fiction from fact. It’s not even remotely rational and yet it’s the most persuasive part of the decision making process. (The same billboards 50 years ago shouted “Studies show more doctors smoke Camels than any other cigarette.”)
Assisted living facility owners pay top dollar for sales and marketing. But unlike the cigarette smokers, their resident’s can’t quit.
Once you’ve sold your home (or the more likely scenario is that your kid’s sold it out from under you)and all your furniture and your car, and cashed in your securities portfolio — all to pay the $3,000-$15,000/month (no, that’s not a typo) it costs for assisted living, you don’t just get disgusted one day and decide to leave.
And that’s the dirty little secret. One day every resident has an epiphany. . . I’m going to die in this place.
And from that moment forward, your home becomes your hospice.
-MK Bayne
As a nationwide drought threatens to drive up prices for food staples this fall, it could pose an even greater challenge for the one in five Americans who weren’t able to afford food so far this year.
For the first six months of 2012, Gallup surveyed 1,000 Americans each day to see whether they’d been able to afford basic food. From the report:
“In 15 states, at least one in five Americans say they struggled to afford the food they needed at least once during the past 12 months. Nationwide, 18.2% of Americans so far in 2012 say there have been times when they could not afford the food they needed, on par with the 18.6% who had trouble affording food in 2011.” Read more →
On a beautiful, sunny Sunday afternoon I grab my tripod and video cam and head outdoors to capture on tape some of the more colorful species that visit the three large birdfeeders I’ve anchored in the fifteen-inch-wide flower bed that marks the boundaries of my patio.
I navigate my wheelchair to the metal plate on the wall that opens the electronic doors in the foyer, and I’m about to push myself outside when something catches my eye – the brown chair that sits by the doors furthest from me. It’s empty.
Normally, I don’t find empty chairs – brown or otherwise – to be a great cause of concern, but this particular chair is special. For a resident we’ll call “Maggie,” the chair has become her nest – part sanctuary, part refuge, and part Romulan cloaking device. (Sorry for the obscure Star Trek reference. A cloaking device makes any space vehicle it’s installed on, invisible to others.) Read more →
You can use fancy names – continuing care retirement community or adult congregate living facility – hire a landscape architect – use aroma therapy – even run full billboard ads showing octogenarians dancing the night away.
But as Anne Richards, former Governor of Texas, was fond of saying “You can put lipstick on a sow and call it Monique, but it’s still a pig.”
Institutional aging exists in America because we’re confused. We’re not quite sure how to balance our dramatic shifts in mortality and morbidity demographics, fractured nuclear family, failed long-term care system and the distaste for our frail, incontinent elders. Additionally, there are quality of life considerations that parallel our dwindling reserves of religious faith. (There is an eerie silence in our churches and temples, while casino blackjack tables operate 24/7)
Yet, you have to look closely to find the real “bad guys” in this story. The anti-heroes are not always obvious.
It’s easy to point a finger at a greedy aging facility owner who pays his CNAs $8/hr and shout “Ah-Ha”, while the real culprit – the social and cultural stereotyping of an aging population- remains hidden.
After the passage of Medicare and Medicaid in the 60s, we thought we’d found the answer for the terminal end of a rapidly aging population: the skilled nursing facility( i.e. ‘nursing homes’). Here’s the recipe - take one group of sick, depressed, demented, disabled, and near-the-end-of-their-life folks; put them all in a bag. Add enough psychotropics to keep the whole lot manageable and shake vigorously.
We thought this was a formula that would work. It didn’t. It doesn’t. And it wont. Its time to take a step back, rethink the challenges an aging population presents and redesign a new terminal aging model.
There are no cars or buses to worry about … Margaretha Bos and her brother take a tour of Hogewey. Photograph: Anita Edridge for the Guardian