When my family played Scrabble, we all looked at each player's letters to help one another spell the best word possible. My dad was into vocabulary, not winning. When my friends who play this game for blood or glory hear that one, they just roll their eyes. My dad and mom were all about co-operation, not competition. And so are their grown children.We have tended to eschew sports for that reason. Most of us are fairly active in running, walking, and dancing, but golf? basket/base/foot/ball? points? scoring? trophies? Puh-leez. We tended to spend our time in the arts and in social, religious, and other organizations.

I don't think we are all that afraid of losing. But competition seems aside of the joy of activity to us. Three of the four of my parents' children have had careers in the arts. The fourth is in law, which my mother always said was just another form of performance. 

So I have not been happy with what I perceive as extracurricular arts in Ohio lately, especially in my chosen field of creative writing. As nearly as I can tell, most of the creative writing activities for school kids revolve around contests. My library has a yearly poetry contest. The Ohio Poetry Association has a yearly poetry contest. The Ohio Arts Council, which once sponsored writers in the schools to the tune of 20 or more residencies a year, now sponsors "Poetry Out Loud," a performance competition. I have found a few free high school writing workshops (yeah, Shelly Rayborn at the  Canal Fulton Library!) and a few paid ones (good but onerous guidelines for scholarships). But by and large, it is just one contest after another, if you are a young person who wants to write.

I agreed to sponsor one contest for the Ohio Poetry Association this year because I was moved by hearing last year's winner read. But now that I wonder about the many losers, I have reservations about it. So when I was asked recently to lead workshops in Poetry Out Loud, I turned it down, writing,

I can't thank [your organization] enough for this offer. Working with kids and poetry and working with your organization are two of my favorite workings. And I am familiar with Poetry Out Loud. I have found some poems I never knew in their yearly list of poems, and I love the memorization and recitation of poetry, which was a part of all my college creative writing classes. 

What I don't like is the competitive element.

So, I am going to have to decline. I have all my career argued that competition is not the best way to encourage the arts for young people, and today, I find there is more and not less competition in student creative writing. For example, at one point, your organization was active in promoting the writing, workshopping, performance, and publication of creative writing among school children, none to little of which involved winning and losing. And yet now, Poetry Out Loud, is the main  creative writing activity for kids, and while it encourages and teaches many things, the end of it all is winning. 

The problem then is that for the final winner, there are many many...losers. You can call it other things, but in fact, it is losing. I have never seen creating competitors as a very good goal for the arts, and especially not for student artists.
 I wish you all the best for this endeavor, and if you have any activities in creative writing that do not end in winning and losing but end in the written or spoken word, its performance or publication, without a winner, I'd be more than willing to serve.

In return, I got a response on how much students today want competition-- it's generational, like social media and the internet, they said. (Huh? No one is on the internet more than I am) and then came some good outcomes for this emphasis: the people who work hardest, win. Except when they don't, and then students learn that judging is subjective and they accept the results. 

I know my deceased sister, a college performance professor, was utterly opposed to performance competition and convinced her college to let her take her students not to competitions but to events where they received feedback on their performances. But that's been awhile, so I asked my former University of Findlay colleague Carole Elchert, professor of performance and performer extraordinaire, what she thought and she replied:

As for the Poetry "contest," I have railed about such nonsense for years at two universities and in conversations with other artists, especially those pseudo-artists running art events, where they have a RIDICULOUS set of criteria for winning, thereby creating losers in an event that is about expression, not competition.  Competition is for males fighting for females.  Anyway, I recently refused to judge a national forensic contest with seven contestants without a break between and then a 15-minute discussion between judges, using a template that makes no sense (not a darn thing I teach in speech class, so who knows what the ??>?!!@ criteria are).

Hmmm. So then I asked a man with talented college-age daughters what he thought. "I think a lot of this competition does more to discourage kids in the activities than it does anything else, don't you?" he answered. 

But really, these are old farts like me. Maybe this generation wants so much competition, as my respondent said. So I decided to ask the real expert on the subject of this generation of student writers and I went to my niece, Bessana Kendig, a current second year student in creative writing at Columbia School of the Arts. She reported that she was fortunate to have a good creative writing course at her high school and that she had taken a summer workshop, and  most meaningfully, she had then led workshops for grade school kids in a drop-in or regular attendance, no-fee program. Her answer to my question about the value of competition of the arts was the most eloquent of all:

I think formal competition for creative writing isn't healthy for the younger developing minds and their self esteem. There is already enough competition between students in schools and it's only another way for students to struggle to meet more expectations. That's not to say there aren't benefits to formal competitions at the high school, college entry, or graduate student level. I know many competitions revolve around winning scholarships which are worth the stress and determination to win. Personally, I support the idea of cultivating creativity without the clouding pressure to be a winner. Everyone should be encouraged to express themselves and competition only limits the potential of many talented people who are not the winners but are still craftsmen never the less.

And really, I can't even. Say it better, that is. Maybe this is just the matter of the apple falling close to the tree, maybe Kendigs are just nuts, but I think not. I think Bessana speaks for a whole lot of kids today who want to create, not compete.


Piper Kerman, author of Orange Is the New Black is back in prison, this time in Ohio, and this time as a teacher...and a role model. She is here as her terrific, poised self. She read at the Ohio Reformatory for Women this past Wednesday night, where I was guest of ORW teacher Drew Shifley. This is my account of my time there and her time there, reading and responding during an engaging, exciting Q and A. 



As many know, I spent four months of my life, stretched across 18 years, in a
medium-maximum security prison in Lima, Ohio as a college professor and a volunteer creative writing workshop leader. Those years left me with an abiding interest in the idea and the fact of prison. And it made me intent on prison reform. Among historical U..S. sites, I have visited Alcatraz,  Eastern Penitentiary, the Wyoming Territorial Prison, and the first U.S. jail in York, Maine. I have also visited Kilmainham Gaol in Dublin and the jail in Managua, Nicaragua. I have led literature and creative writing workshops in Grafton, Allen, and the now closed Lima Correctional, all in Ohio, and in La Modela Prison, outside Managua, Nicaragua.

But I had never been in a women's prison till Wednesday. 

It was pretty similar to the majority of prisons I have been in, with a typical sallyport entry, so I was wearing no metal, stripped all my jewelry off and left it with my purse in the car, slid through the metal detector with just a plastic pouch of my I.D., pen and paper. Drew took me on a tour of the campus, a mix of old, heavy gray stone and newer buildings that looked like temporary WWII structures. I most enjoyed the beauty salon. At LCI, we had a barber shop where my former student and later Hollywood actor Bill McKenzie trained and learned the trade of barbering that paid his rent while he went out on auditions. At ORW, hair dos and manicures were going on, and I was offered one, but we had to get on to the show. It was nearing supper, so a lot of women were out on the grounds, and in the fact that they have to wear pants and shirts, the scene was not all that different from a men's prison.

Entering the chapel where the reading took place, Drew scored seats for us in the first row on the right. Piper's student were first row center, all sitting up tall and clutching their copies of Orange Is the New Black, all wearing the blue shirts with orange collars and blue pants. We waited half an hour, and then Piper walked in in a beautiful sleeveless green brocade-like dress and sat down right beside me. We shared a polite exchange, and then it really was showtime, led off by the Deputy Warden and then the Warden, Ronette Burkes. And you will forgive me if I continue with the couture for the evening--and this won't be the last time--but there was the first huge difference from a men's prison. Where the wardens I have known in men's prisons (even the one woman warden) always always wore suits, these two women were  in a colorful orange dress for the warden, in a purple flowing top for the deputy warden, both in sandals. It was clear when they introduced the author that the two women are as deliriously happy to have Piper among them as her students are.

Piper began by reminding the audience of her background: time served in the Danbury Connecticut Federal Prison, in the Federal Transport System, and in the Federal Jail in Chicago. She would read three passages from her book, then take questions.

She began with "Schooling in the OG," which begins, "I had learned a lot since arriving in prison five months ago...." including a recipe for "Prison Cheesecake." (The recipe is here,   but to get Piper's tips on avoiding mishaps, read the book.) The passage also treats the prison yoga class led by Yoga Janet and the five women who attended the sessions. 

Second she read a passage about an afternoon when one of the prison teachers took her and a friend away in a truck, into a woods, and to the edge of a beautiful lake, described in awed detail. Piper the inmate put her hands in the cool water, then spent the afternoon painting picnic tables. Piper the author used it as an example of how the writers of Orange Is the New Black used an incident in the book and blew it up bigger than life in what became what I will call a beach scene at the end of one season. (No spoilers here.)

The third passage she read, from chapter 16, "Good Time" concerns Christmas in the prison and unlike John Prine's version, this one is about the women's activities and friendships during the season.

Then she opened the floor for questions. Without a recorder, I am left giving you the closest account of her words, so I am quoting indirectly but as accurately as possible.

Q: Where did the title come from?
A: Sometimes authors get a title after the work is written, or somewhere along the way, but this title was with me from the beginning. I wanted to use a play on that fashion statement we hear every season, "Gray is the new black" or "Turquoise is the new black," but I also wanted to signal that this is about women. The latest statistics note that there is a 650% increase in the incarceration of women (some say 800%) while there has been a 400% increase for men. I wanted to signal this problem.

Q: How do you feel about being in the same state as "Nora" now that you are in Ohio?
A (smiling, maybe ruefully explaining to the audience): My former girlfriend, "Alex" in the TV series, lives in Cincinnati, and her sister in Dayton. Well, you know, I had to take responsibility for what I had done and get over revenge ideas. And Cleary has a book now. I haven't read it all. And Cleary is Cleary. She is taking care of her aging mother, and that's a good thing. Her sister has gotten her degree and is doing good work. 

Q: Are you still in touch with the women in the book?
A: Yes, some. Some from the beginning, like Yoga Janet and Pops. Some got in touch with me when the book came out. One woman that isn't in the book is from near where I am from, Massachusetts, and we have similar lives-- divorced parents and stuff-- and she read the book in draft and gave me good feedback.

Q: Is the chicken real?
A: The chicken was real, but it was a chipmunk. (Piper told the real story, then the account of seeing the story boards for the TV show. But again, no spoilers. Just: the chicken was a chipmunk.)

Q: Is the guy who supported you the whole time, the one in the book-- is he the one you are married to now?
A: Yes, Larry. Larry is the one I am married to. I was fortunate to have support while I was in and when I got out. I tell everyone, what you need most is a support system.

Q: Why Ohio? Why are you here? 
A: I have to say there was a long response to this, but it wasn't an answer. It is clear that Piper is teaching at the Marion Men's Correctional one day a week and at Marysville one day a week, that she is here with her two children and Larry. At the end of the year, she is hoping to produce an anthology from the women's writing (ala Wally Lamb, though produced in condensed circumstances), but why Ohio, um, that wasn't clear. Or even murky.

Q: What was your motivation to write the book?
A: I knew right away that I would write a book. I have such a belief in the power of memoir to clarify and heal our experience-- it is why I am here, helping people to write their memoirs. But I think it takes time, too. One of the prison memoirs I have read was written too close to the experience. At least I think so. I'll have to see what the women in my group say. I think you need time to sort through it the experience.

Q: How do you feel about the TV series? How do you feel about the actress who plays you?
A: I think it is sort of an over the top version of my experience, as I demonstrated with that passage I read on the lake. I've been to sessions with Genji Cohen and the writers, and I have contributed. And on the set too. Once I saw a scene, and I said, "The woman would never poke the guard like that. Never," and they changed it. But one time, they just said, "Well, in our world this is going to happen." And if I am not there, they are going to do it however they want. And the actresses are amazing. When I read the character of Suzanne, I thought, oh, I don't think I like this, this insane character (Suzanne "Crazy Eyes" Warren in the show). It seemed so disrespectful when I read the script. But then they got an actress ("Uzo" Aduba) to play the part with so much love and heart, and I love it. I really like Taylor. She is a lot taller than me. 

Q: How would you compare teaching to writing?
A: This is the first time I have taught, and it is an amazing experience, but I have to say, I am very glad we have these books to read and discuss each week. We are reading nonfiction books from many points of view-- One that we read, Running the Books is from the point of view of a prison librarian. I have to say the one thing I have not been able to find is a good book from a warden's point of view (turning to the warden, who sputters, "In my retirement!")   

Q: I read somewhere that you are working on prison reform. Are you, and if so, how?
A: I am, mostly with my writing and speaking. I think by sharing my experience, I am lending my voice to prison reform. We may be making some inroads. Six states have reduced their prison population by 23% in the past year. That's a start.

Q: Did you read Emily Nussbaum in this week's New Yorker, writing that the show tackles topics that aren't being aired anywhere else? For example, the topic of privatization.
 A: Yes, I did. Emily Nussbaum has been a big fan of the show. And I like the way she has described it: "The series rejects realism, mining instead an outrageousness that verges on the vaudevillian."  I was the one who got the theme of privatization into the show, so I am very pleased with that issue. 

Warden Barnes and the Deputy Warden were sidling up, suggesting our "good time" was
Photo by Shiffley
coming to an end. They gifted Piper with a OWR travel cup, and announced that Random House was giving a copy of the book to everyone in attendance and that Piper had agreed to sign them. And there were cookies and lemonade. The line for Piper's autograph was already winding around the whole enormous room and out the door, and we couldn't say that long. We got our copies and headed out the building, over to the sallyport, waiting for the bzzt to release the door to let us in and lock us up and hand over my I.D. and let me out. 

I left prison last night, elated as I have often been when leaving the joint  that good work was going on in a very tough place. But for the first time in decades, I also felt that maybe, just maybe the U.S. is going to make some headway in improving our particular version of prison. For a long time, it seemed you were considered a lunatic for even suggesting that the system was not fair, logical, economical, ethical, or beneficial to the society. But politicians on both sides of the aisle, church people, people of conscience and average people who haven't been in prison are beginning to see the need to improve. The amount of money we spend on such a very bad system that perpetuates itself is growing more and more appalling to us all. And the voice of Piper Kerman is one of the voices leading us up, out, on into better ways, better lives.


Last in a three part-series on Dementia. 
See part 1, "Dementia: What Dickens Knew" here  
See part 2, "Dementia: Visiting the Cleveland Clinic and Beyond" here

 When I face the new stages of life, which are often the old stages, I read. Like childbirth and cancer, the old age stage is filled with horrid unfounded tales told by our contemporaries. Books can be filled with untruths too, but can be fact-checked and considered at length and close at hand. I tend to appreciate authors who provide both personal experience and research, especially statistics and references. Here are a dozen titles whose books I have benefited from, some going back to my sister’s fight with cancer 2000-2002 and my mother’s all too brief illness and death with pulmonary fibrosis in 2008 up to my father’s current dementia.


My Top Two


My top two are Katy Butler’s Knocking on Heaven’s Door (2013) and Atul Gawande’s On Being Mortal (2015). I found Butler’s book through her essay “What Broke My Father’s Heart” (in Best American Essays 2010) about her family’s struggles with her father’s dementia. The essay first appeared in the NewYork Times .

What I like best about this book is Butler’s stunning use of facts about the medical establishment and especially how much of our care is driven--misdriven, careening into walls, smashed-- by our health care system. (This was all before Obamacare, so I am not going to be blaming it, which has at least provided some health care for thousands and thousands who never had it.) For example, her father’s specialist was paid thousands of dollars (counting a gold-plated watch) for every pace-maker he put in, but her father’s lifetime GP could not be paid for an appointment to explain why the pace-maker was not a good option for him. This book is heart-wrenching, factual and so well-written. 

More recent and my current favorite is On Being Mortal (2015).  Now, I have been smitten with every article and book on health that Dr. Gawande has written, and I am chauvinistically pleased that he is an Ohio boy, born and raised in Athens. More to the point, though, he is now a surgeon in Boston and a medical professor at Harvard. Everything he writes is filled with his common sense, clear prose, and many case studies and facts. In this book, among studies of his patients and other doctors’ patients, he also gives stories at length about his own parents and other family members. The book is divided into sections on topics such as independent living, assisted living, and hospice. While recognizing some of the worst practices, the book reflects most on best practices and some fascinating history, including the story of the woman who founded the concept of assisted living. Gawande's account of his own father’s decline led me to see that he has definitely walked in my shoes, a few paces ahead of me, and I am glad for his wisdom and practices that I can try to follow. Katherine Boos’ blurb on the book sums it up perfectly: “A deeply affecting, urgently important book—not just about dying and the limits of medicine but about living to the last with autonomy, dignity, and joy.”

Then, ten more books, in alphabetical order by author:

Ira Bycock. The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life (2009). Bycock is a doctor specializing in palliative care, whose writing and work is in trying to get us to think and talk about the end of life. He has convinced me that more palliative care might make for less euthanasia. He has seen that palliative care can cure needless suffering and in some cases, actually helps people live longer and if not longer, to have better deaths. Certainly palliative care would have ended the terrible pain that my mother had the last week of her life when she was refused palliative care by both her GP and her specialist, who claimed she had 5-7 years to live and who never witnessed her suffering. 

Roz Chast. Can’t We Talk About Something More Pleasant (2014).  I am not a big fan of cartoon memoirs, nor graphic novels, nor their ilk in many categories, but I am a fan of Chast’s New Yorker work. I could not relate to Chast’s distance and seeming disapproval of her parents’ lives, of what seemed her driving force, guilt. But I very much related to the dynamic she depicts where we all fluff off the discussions that Bycock is trying to get us to have. I am hearing my generation repeat the same useless lines of my parents: “When I get to the point where I can’t do anything but___ [fill in the blank with: watch televisions, go to a nursing home, live on IV’s….], just shoot me.”  Chast's whole book, starting with the title,  reflects this attitude of her parents. Read it and weep and then start talking, to your kids if not your parents.

Charles Dickens. Little Dorrit (1855, among his many novels with elderly characters, pleasant and not). Supposedly George Bernard Shaw once said that this book is “more seditious than Das Kapital,” and while Shaw probably meant the novel’s portrayal of poorhouses, the character of Mr. Dorrit in relationship to Mr. Nandy provides a clear and seditious treatment of what Pipher (see below) calls “the old old” by “the young old.” In addition, the portrayal of Mrs. Plornish, Nandy’s daughter, shows an adult child who reveres her father and tries to do best by him in her father's difficult economic circumstances along with her own. 
Doty, Mark. Heaven’s Coast (1997) and Dog Years (2007). Doty had many years of caregiving for his partner who died of AIDS, for other friends, and for his aging dogs. What was most useful to me was his criticism of some the bossier hospice providers, while still appreciating hospice. His words comforted me in the aftermath of my sister’s and mother’s negative experiences with hospice. Doty, for example, notes of the hospice provider who started to hint that his lover should talk about “letting go,” “Doesn’t it make sense that we might wish to have these conversations, if we wish to have them, with people we love?”

Steven Henry Goldring, Unbelievable (2010). This self-published book doesn’t deal with aging, but it does show in clear, hair-raising detail how family members can turn on relatives and have them committed to institutions unnecessarily. Many of the elderly are threatened with commitment by sons and daughters, as well as by government agencies, as I have written about on this blog. I once heard a former teacher of mine, living across the hall from my father, being screamed at by his daughter, “If you even think of removing me as your POA, I will have you declared mentally incompetent.” Steven Goldring managed to extricate himself and is living much more healthfully ever after, with humor and grace.  

Jacoby, Susan. Never Say Die: The Myth and Marketing of the New Old Age (2007). Like Katy Butler, Susan Jacoby is here to tell us that living longer is not the best of all possible worlds, though much of our national conversation and medical practice would make us believe so. An author of nine other well-researched books, many on history, she provides American history to show that we are a youth-oriented culture and current examples to show we are burying our heads in the false sands of how young we can stay forever if we just live right. She is trying to get us to lift our heads and look death in the eye.  

Dr. Kenneth A. Kosik, The Alzheimer’s Solution: How Today’s Care Is Failing Millions and How We Can Do Better (2009). I stumbled upon this book in the library when I was first facing my dad’s situation after the death of my mother, who had been making up for his memory loss as he was making up for her physical weakness. And while this book had so much more, my reading focused on his analysis of how much money the drug companies are making on Alzheimer’s medicine that shows no clear clinical proof of working, only anecdotal evidence. It’s been a big influence on me. Researchers continue to search for a drug that will work, which I’d love to see. This week, NPR had a story on two new ones they will begin testing on humans in 2016, and I’d love to see them work, for me maybe, if not in time for my dad.

Dennis McCullough. My Mother, Your Mother: Embracing “Slow Medicine,” A Compassionate Approach to Caring for Your Aging Ones (2007). A geriatrician for many decades, McCullough, like Butler and Bycock, believes that much of our super-duper expensive, end-of-life care is chosen out of an uninformed, crisis-like atmosphere. Like Bycock, he is in favor of palliative care, and both of them, unlike the doctor and family that Iwitnessed in my father’s presence, are motivated more by the patient’s comfort than the family’s or institution’s desire to get it all over with.  Also, his emphasis is on the adult children helping the parents to navigate the confusing waters of elder care, and not to wait, as Chast's family did, until so late in the process but to start having the conversations early. I also love his admonition for adult children to remain in attendance during their parents' hospitalizations. Dr. McCullough notes, “Most geriatric doctors I know would not want their own parent in a hospital without a family member in attendance at all times.” He is good at recommending movies and quoting poems that are apt for these situations.

Mary Pipher, Another Country: Navigating the Emotional Terrain of Our Elders (1999). This book is a little older than the others, and it comes from a clinical psychologist who sometimes, honestly, seems a little flakey to me. However, I really like and respect how she tries to get the younger generation to see that much of their difference from the older generation is based in different world views that are legitimate on both sides. (Many of the younger generation just like to think they are so much smarter than their parents.)  For example, she says, our parents’ generation is “pre-irony,” clearly a different way of looking at situations. Like me, she has always genuinely liked older people.“In America, we are xenophobic toward our old people,” she notes. She also makes an interesting distinction between the young old and the old old-- the former being, well me, someone 60 or older who still has good health and the latter, those who are old but with health issues. Like McCullough, she salts her writing with quotes from literature, which is a relief because her own writing style is a little wearing. 

Laura Wayman, A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer's Disease or Other Dementia or Memory Loss (2011). Honestly, this one seems a little flakey at times, too, and a bit over-focused on one way to deal with dementia. However, having seen many unloving approaches to dementia care, I have to rate this one loving and worth reading, especially for two things. First, Wayman focuses on the caregivers, and how they need to take care of themselves. Second, she has very practical suggestions for those who are having difficulty responding to parents and patients who are mentally in another world, maybe not able to recognize the world they physically live in, maybe not even their own adult children. 

That's my list for now. Please feel free to post in "Comments" any titles I am missing. I'd love to see suggestions for poems, novels, and movies that treat the topic of aging and caregiving, too.

DEMENTIA: Visiting the CLE Clinic & Beyond

Second in a 3-part series on Dementia. 
See part 1, "Dementia: What Dickens Knew" 
See part 3, Dementia: 12 Books I R3ecommend"

Not content with the diagnosis and treatment my father was receiving at his assisted living home, I made an appointment for him to have a medical evaluation at the Cleveland Clinic. This is a brief summary of our original three appointments five years ago and an update.


At our first appointment at the Cleveland Clinic Center for Geriatric Medicine, we met with Dr. F, who asked Dad why he was there, what he wanted. My father, who seldom cries, said through tears that he wanted to go home.

And who could blame him. He had spent six weeks in skilled nursing, where he had been unceremoniously dropped off from a hospital analysis for a stroke, which hospital testing records show he did not have. Six weeks is how long Medicare would pay for ensuing rehab care. It was not a good place and has since been shut down.

His roommate had been dying of a painful skin cancer, and he moaned a lot. To block the noise, the staff left the man’s TV on at a volume above his moans, 24-hours a day. The fact that my father was able to sleep at all is a tribute to his incapacity for insomnia. He has always slept like the proverbial rock unlike his insomniac wife and eldest daughter.

One day, when I was visiting, the man’s son met with his father on behalf of the family, to ask him to give up treatment. The man did not want to go that route, and the son pointed out that under the doctor’s orders, he wouldn’t be able to have his nightly drink, and the son couldn’t imagine the father wanting to lead a life like that. An hour later, other family members and the doctor came in to pitch the man on giving up treatment. This whole conversation was carried on in our hearing, a thin curtain between, and when I tried to leave with Dad, I was told he had to stay in his room. Nothing was ever said about hospice or pain management, which I could not see that the man was getting beyond turning up the volume on the TV. He died a few days later, at night, in the room with my father.

After the six weeks were up, Dad had moved into an Assisted Living apartment, but he was not happy there.

Dr. F said that they would proceed slowly, set up an appointment for the next month to assess Dad’s memory loss. He told us that while Alzheimer’s could not yet be determined till autopsy, they had a battery of tests that could ascertain where in the brain the loss was occurring, and that would provide an indication of what kind of dementia we were dealing with, if that is what we were dealing with since other things cause such memory failures and too often don’t get diagnosed. Then, the third month, whatever they determined Dad was capable of, they would get set up for him to do, including going back to his home, if he wanted.

“And I want to drive,” Dad said.

“Okay,” Dr. F answered. “If you are able to do that, there is a place in Youngstown where you could go to brush up on your skills, since it has been some weeks since you have driven.”

With a touch of anger he seldom expresses, my father said, “I never had an accident or a ticket my whole life.”

And then, in a gesture and tone of kindness I will never forget, Dr. F leaned forward, placed his hand lightly on Dad’s forearm, looked him right in the eye, and said, “Mr. Kendig, no one here is criticizing your driving in the past in the least.  Never having a ticket or an accident in all those years is a very good record. What we want to do is make sure that you can manage safely now, for yourself and for others.” His calmness dissipated Dad’s irritation.

The doctor looked over Dad’s list of medications and pointed out that two could be discontinued, especially the Aricept, as they would be testing for dementia at the next appointment. He wrote orders to the home to cancel those two medications.

As we left that afternoon, my father was smiling in the cold Cleveland January sun as he said to me, “He listened to me. No one listens to me any more. He really listened.”

When we returned to the Assisted Living facility and I gave the written orders to a nurse there, she said nothing, but, I came to learn the following month, the doctor she would be handing them to was not about to listen.


Dad and I first met with a psychologist, Dr. P, who was sterner and more emotionally distant than Dr. F. However, some emotion came through as he looked over the accompanying paper work from the Assisted Living institution and then looked up at me, and said in a very surprised voice, “Dr. F asked the residence to cancel the Aricept, and they have responded by doubling it.” He shook his head and went on to ask some preliminary questions of Dad. Then he described how the day would go. Basically he would be handing us off to a psychometrist  who would perform the tests that Dr. P had ordered and would later evaluate—no MRIs or scans, but series of questions and exercises that could determine where in the brain the memory loss was located. Hours of tests, with brief rests and a longish lunch break in between. 

Since I didn't  go into the testing rooms, I don’t have much to report from this day. Dad and I showed up in the waiting room and sat with families getting active sons tested for behavioral issues, a woman getting tested after an accident, and other elders like my father. Dad's psychometrist, a young woman, whisked Dad away and told me to come back at lunch time, which I did. After lunch, we returned for another hour and a half of testing, and then we left for the day with an appointment for the following month. 


Our third and final appointment, we were back in Dr. F's office. In the interim, his staff by phone had guided me through the process of enabling Dad to get off the two prescriptions which they felt were unnecessary.

Dr. F first reviewed the results of the February tests. In short, Dad clearly had mild to moderate memory loss. It was located in a different part of the brain than Alzheimer's memory loss, and Dr. F thought Dad was probably experiencing vascular dementia, from a heart attack he had had in the 1990's. Dr. F also noted that at Dad's age, the chances of developing Alzheimer's increased exponentially every five years, and the psychologist had suggested that the family contact the Alzheimer's organization for information for the future.

Meanwhile, Dr. F said Dad had been paying bills and getting to appointments and perhaps with some assistance, Dad could return to his home if he wanted.  At this point, where would he like to live? To my surprise, Dad said he wanted to stay in his Assisted Living apartment and he was content with not driving. And yet, it wasn't too surprising. He had been lonely since Mom's death, and he was appreciated as quite the character he is in his new home.

That established, Dr. F moved onto treatment. Basically his general philosophy seemed to be to avoid as much medicine as possible and to get physical exercise. It seemed simple, and though it hasn't always been, it beats a lot of side effects of medicine.

In fact, Dr. F is a well-known advocate for exercise for seniors. He asked Dad about getting exercise, and while Dad had been very active before going into the Senior Residence, he was not allowed to walk outside there. He was being considered an escape risk since his unhappy skilled nursing days and the only exercise routine there was very minimal—head rolls and finger stretching.  So the doctor wrote orders for Dad to walk a mile a day. (When we returned to the facility, the administrative nurse was actually pleased with that order and offered to walk with Dad the first week.)

And he told Dad to cut down on his eating, not to cut out anything but just cut down. I had to smile as those had been my mother's orders for Dad at many times in his life, one sandwich instead of two in his lunch box, for example. (And Dad really took the doctor's words to heart, as he had taken Mom's, and cut out all the snacks that were being perpetually served in his residence.) Dad was to return in six months and see how his health and his memory loss were going.



In the six month appointment that followed, the Clinic's informal memory test showed Dad holding his own, no change, as did the tests a year later. Clearly, he had some dementia, but it wasn't progressing, and he maintained his personality and his memory for the people in his life. He was walking a mile a day, and he had lost eight pounds.



This morning, five years later, my neighbor thanked me for recommending the Cleveland Clinic for her daughter-in-law’s elderly father, whom she thought was being over-medicated by his local physician. “They took him totally off two of his medications and pointed out several others which did not have to be taken daily, as he was taking them, but only as needed. And they recommended exercise.” The family despaired that their father would ever exercise, but he shocked them all by taking up Dr. F's recommendation to walk daily. It has increased his strength so that he can get down and up and around better than before, and he feels better. They are beginning family discussions of how he would like his life to go from here.
Less medicine, more exercise:  the same recommendation Dad got seems almost too simple a prescription from such a famous institute of health...except it has worked for him and many elders. Now, at 90, Dad has gotten five good years out of that advice, when otherwise, he might have been over-medicated and bound to a walker or a wheelchair, as is almost everyone else in his residence. He has lost half a point on the memory index, but that seems great for five years. We'll take it. The bad news is that the institution has totally discouraged walking, and his weight is back up, which wouldn't be so bad in itself except his breathing is labored and he misses the walks.

He comes once or twice a week to his former house which I bought and live in and where we have dinner together and he watches the baseball game or the hopeless Browns. (Thank goodness LeBron is back.) We go to the farmer's market or a concert or to Sippo Lake, which he helped to establish as a county park in his years on the zoning board. He has been to two of his WWII biennial reunions in Cleveland and Savannah (and New Orleans coming up!) He has been to every yearly Pro-Football Hall of Fame Parade here in Canton and one of the games, and he flew on the last Honor Flight out of Canton to Washington, D.C. He sings in a choir and leads a discussion at his assisted living place; he refuses to play bingo despite entreaties to join in. 

One of my high school teachers said to me recently, "I couldn't believe it. I walked into your dad's place, and he knew me right away, said, 'Hi, Louie!'" Of course he does. He has seen nearly all of Louie's past 50 musical productions. He loved this year's production of The Adam's Family. He recalls the names of most people from his past when he sees them, including most of the 50 of the people who showed up for his 90th birthday party at Sippo Lake. And he recalls the names of few to none of the people in his residence, including the three women he plays cards with every weekday evening. 

A lot of this is luck, I know. A story on NPR this week cites a new study showing women to be more vulnerable than men to Alzheimer's, both in acquiring it and declining faster with it. And several men and women have come, worsened, and gone from Dad's residence to Memory Care and death in his time there.

So I don't mean to suggest that getting off medicine and taking a walk is going to work for everyone. As my sister was in decline with Non-Hodgkins Lymphoma, we were stunned by the unkindness of the stories of people who survived it just by believing, or by having God on their side. One acquaintance told her that her church had just "prayed away" the cancer of one congregation member. As if Daun's church-- which was bringing food, providing rides to treatment 90 minutes away, and Lord know, praying-- just weren't praying enough? If wanting to live could cure cancer, then single-parent of a beloved five-year-old Daun could have bottled and sold her struggle. But in and of itself, wanting to beat a disease is not always enough necessarily, and it is a terrible betrayal of those brave people who have not survived the disease to suggest that they just didn't try hard enough. 

What I do mean is that getting medical assessment is important, and not the assessment of nursing home doctors, some of whom are incredibly competent and caring (my husband's aunt had one of those), some of whom are just on the take, and some of whom are just incompetent. If you wouldn't diagnose your parent's  cancer yourself, don't diagnose their type of dementia. A news story this week cites that 60% of dementias are Alzheimer's, and 20% of them are misdiagnosed. Misdiagnosis can have terrible repercussions, as I witnessed in two devastating cases with the elderly. 

My Dad has luck and genes going for and against him when it comes to dementia. At least six of his 11 siblings have died with dementia, as did his father. Monitoring medicine and staying active has helped him for now. Dad reminds me so much of his father, whom I recall as a very quiet old Grandpa, working in his basement every day, living next door to my aunt, taking long walks, and always smiling and chuckling softly when we spoke to him, the respected elder of our family. For that memory and for whatever memory Dad has today, I remain grateful.

In my next blog, I plan to share a list of some books that have informed me in helping to care for my my dad, and before that, my mother and my sister.

DEMENTIA: What Dickens Knew

The situation is as old as a Charles Dickens’ novel, as recent as the Glenn Campbell movie, I’ll Be Me, which was broadcast on TV this past month: How best to help our relatives and friends who are beginning to show signs of memory loss. Thinking back, I was fortunate to be raised by parents who both treated their own parents with respect and assistance in their old age, as did many of their siblings and their spouses, my aunts and uncles. But as La Rouchefoucauld  once said, “Each age of life is new to us: no matter how old we are, we are troubled by inexperience,” and by the time my time rolled around to assist, fifty years had passed and the world had changed for the elderly, for all of us. For one thing, there are many more of us living longer, acquiring this debilitating disorder.

Charles Dickens has over 200 elderly characters among the 3500 or so which people his novels, among which is  Little Dorrit’s Mr. Nandy, my favorite for showing how very wrong-headedly some people respond to the elderly.

Mr. Nandy is an old man who has had to commit himself to the poor house, where he is both pitied and patronized by Mr. Dorrit, who is also old and in the poor house, but who somehow considers himself better than Nandy because he is not so old. In one scene, over tea with Nandy and other people, Mr. Dorrit keeps up a running commentary about the old man’s failings, right in his hearing, as though the older man were deaf, which he clearly is not. Mr. Dorrit asks if he walks much. No, says Nandy, he’s never liked walking. (“Legs going,” Dorrit whispers to the other people present.) Mr. Dorrit offers him something to eat and on Nandy’s “not instantly replying,” Dorrit whispers, “His hearing is becoming very defective. He’ll be deaf directly.”

But the most telling exchange is this one when Dorrit asks Nandy how old his younger grandchild is:

“John Edward,” said the pensioner, slowly laying down his knife and fork to consider. “How old sir? Let me think now.”

“[Dorrit]…tapped his forehead (‘Memory weak.’)”

“John Edward, sir? Well, I really forget. I couldn’t say at this minute, sir whether it’s two and two months, or whether it’s two and five months. It’s one or the other.”

“Don’t distress yourself by worrying your mind about it,” he returned, with infinite forbearance. (“Faculties evidently decaying—old man rusts in the life he leads.”)

Whew, if a grandparent’s inability to recall immediately the exact age to the month of each grandchild is the test of mental decay, most of us are in deep trouble.  


Mr. Dorrit reminded me of the nursing home doctor I encountered when I first flew in to find my father, who had been unceremoniously dumped there the week before by a relative. Just two weeks before that, my 84-year old father had visited me in Boston, walked all of Plimoth Plantation with me, and spoken kindly to the Harvard administrators and Michigan tourists at our Thanksgiving table. Now, he was sitting in a dark nursing home at 1:00 p.m., bleary and trying to stay awake through what seemed like a drug-induced state.

“Your father is so far gone with Alzheimer’s that I don’t even know if Aricept will help, but I got him on it right away,” the doctor glared at me.

“Alzheimer’s?” I asked. “Are you sure? My grandfather had this type of dementia and it doesn’t seem like Alzheimer’s to me.”

Dad had fallen asleep, so the doctor shouted, “Russ, what did you have for lunch?” He shook Dad and repeated the question. Dad, roused himself and looked up, ginning through his memory as though through cotton bolls and replied, “I…I can’t quite recall.”

The doctor turned to me, triumphant, “You see right there: if he can’t remember what he had for lunch, that shows that he has Alzheimer’s.”

Oh honey, if not remembering what you had for lunch immediately upon waking up is the diagnosis for Alzheimer’s, then most six to sixty year olds have it. I thought there might be a more scientific way to a diagnosis. And yet, I can’t tell you how many of my friends self-diagnose their parents’ and others’ dementia as Alzheimer’s, even though they wouldn’t diagnose skin cancer without a medical opinion. There are many kinds of dementia, many stages and ways to approach it. Many doctors are as untrained and insensitive as the public on the issues.

Then the doctor said, “And if you even try to remove your father from this place, I will lock him up so tight, you will never see him.”

As the adult child who had taken the primary care for my parents for the previous 15 years, the only adult child to show up for every out-patient operation and hospitalization, whether I lived two hours away or thirteen, his words absolutely stunned me. However, my parents had never signed medically proxy papers, so my fifteen years didn’t count for anything. I was terrified.

At the urging of my great high school friend Linda Ecksmith, I made an appointment with the Cleveland Clinic Geriatric Medicine Department for an evaluation and management plan. Linda had done a lot of research and made an appointment there with Dr. F for her mother, whose condition was not related to memory loss. I mention this to show that the department is not only about issues of memory loss but the full range of health and disease for the elderly. 

If you aren’t close to the Cleveland Clinic, you can find referrals for good geriatrics referrals at Health in Aging

My father was thrilled: the Cleveland Clinic had saved his eyesight 60 years earlier when, as a welder, he had gotten a piece of steel in his eye. He revered the place. And, my Cleveland nurse friend poet Mary Chadborne told me, the Geriatric Department would medically access the situation, speak to the whole family, and help us through now and whatever stage came next.

In my next blog ("Dementia: The Cleveland Clinic and Beyond") I will briefly outline what went on in our three monthly appointments at the Geriatric Medicine Clinic, update my Dad's situation today, five years later. After that,  I will post a list of some good books (Dementia: 12 Books ) I've read over the past ten years on the subject of aging in America. I include Little Dorrit where Mr. Nandy, while a minor character, is such a character. So is my dad.