An interview with the authors of “What to Do about Mama?: A Guide to Caring for Aging Family Members”

Helpful Books Blog (HBB) is very happy to have authors Barbara Matthews (BM) and Barbara Trainin Blank (BTB) drop by for an interview.

wtdam_fcFor nearly five years, Barbara G. Matthews served as an Assessor/Care Manager for the Area Agency on Aging of Dauphin County, Pennsylvania. Her main responsibility was to visit seniors in their homes to administer a comprehensive assessment, which determined their needs and eligibility for services. Matthews then “retired” to become a full-time caregiver when her mother-in-law moved into her home, an experience that motivated her to write this book.

Barbara Trainin Blank is an independent writer and editor now based in Maryland. A writer for newspapers, magazines, and web sites, in areas as diverse as the arts, health and medicine, religion, and societal trends, she has contributed to Health, Emergency Medicine, Hadassah, Business2Business, and B magazines, as well as to Jewish Telegraphic Agency, Patriot-News, and Carlisle Sentinel, among others.

HBB: What to Do About Mama is a great title for an elder care book. Please give us a quick summary:

BTB: Fifty-four million Americans already serve as unpaid caregivers to family members, and that number is likely to grow as the population continues to age. Two-thirds of these caregivers are women—many of them in the “sandwich generation,” simultaneously caring for both children and older family members. This book offers guidance to present and future caregivers—based on the real-life experiences of the authors and other caregivers who have openly and honestly shared their joys and heartaches. It isn’t a book by “experts,” but by people in the trenches—to help you develop realistic goals and expectations and strategies to keep your sanity through the trials and tribulations of caregiving. Your experiences may be similar to or different from those of the caregivers featured here, but their stories are likely to resonate with anyone who has cared for a loved one—or might.

HBB: How did you come to write this book?

BM: First of all, I worked for the Area Agency on Aging for over four years; it was my job to visit seniors in their homes in order to administer comprehensive assessments to determine their needs and eligibility for services. I saw firsthand the challenges for seniors and their caregivers.

Secondly, I was a caregiver for seven years. During the time I worked at Aging, my mother-in-law moved from Florida to our city in Pennsylvania. She resided in a supportive independent-living retirement facility. After living there for two years, she began to have falls, which required a cycle of emergency room visits, hospitalizations, and extensive rehabilitation. The “solution” to the problem was for me to quit my job so that my mother-in-law could move into our home with me as her full-time caregiver.

Lastly, I became active in a caregiver’s support group run by a local hospice. One of the group leaders suggested to me that I keep a journal. I also had a lot of e-mailed letters that my husband and I wrote to his siblings when we were trying to deal with the escalating needs of our caregiving situation. In addition, I was interviewed for a magazine article about support groups. After that process I thought, I have all this stuff; what can I do with it? I spoke to the author of the article, who was involved in her own challenging caregiving situation, and asked if she would be interested in co-authoring a book. She was—and we did it! We began the process in January 2012. The book was published November 2013.

BTB: Essentially, there were two factors. One was the professional. I’m a full-time writer and editor, and both because of my own interests in health, medicine, and the social sciences, and because of the timely nature of the subjects, I was often called upon to write journalistic pieces about elder care, caregiving, the sandwich generation, etc., for newspapers and magazines. It was through one of these assignments that I met my co-author. I had been asked to write an article about caregiver support groups for Boomer magazine (a publication of On-Line Publishing in Columbia, Pa.). Barbara Matthews was one of the people I interviewed for this story. She then approached me with a proposal to co-write a book about a subject that had touched us both personally. That is the other component of writing this book. After my father’s passing in 2008, my mother began to exhibit signs of dementia and later had other complications (a fall, lung cancer). Although my brother lived like 40 miles away from my mother—140 miles closer than I did—I realized that most of the long-distance caregiving was going to fall on me. That meant overseeing the home health aides, my mother’s finances, and a million other details, it seemed. Barbara Matthews’s proposal spoke to me because of the difficult caregiving situation I found myself in, with little preparation, to say the least. I was shocked and unready to take on what I did, especially the dementia aspect of my mother’s situation.

HBB: Why should we buy your book? Who is your target customer?

BM: Since “everyone is a potential caregiver,” the answer to this question is broad: it is for present, past, and future caregivers. Current caregivers have the most urgent need, but because they are generally embroiled in the many demands of caregiving, time is at a premium. Therefore, the ideal is for potential caregivers to read the book before it is “needed.” As much as we hate to face it, this includes (at least) the children of baby boomers. Life is fragile. It can change in an instant, and at any age. For those people who have “finished” their caregiving, the book can provide a great deal of validation of their caregiving experience, and possibly, much-needed catharsis, too. And they might be called upon again…

BTB: As my co-author has said, everyone is likely to be a caregiver at some point in his or her life, and most of us are unprepared for the challenges. In fact, from what I can tell, most people haven’t even thought about it, though they do realize their parents (and other older relatives) will get older. There are many books out there by experts; our book was written by people “in the trenches” who actually experienced caregiving and have given those experiences a great deal of thought. Our target customer is probably anyone who has aging parents or other family members—but it should not be ignored by anyone, really, since people may end caring for spouses, even children, as well. I’m thinking of a friend whose father developed early-onset Alzheimer’s; at a time her parents should have been enjoying the height of health, the mother was thrust into the role of caregiver, as were my friend and her husband.

Recently I attended a book fair to promote the book, and several people stopped by my table to look it. They seemed to be divided into two groups: young people, who said they didn’t have to worry about, and older people, who had the “been there, it’s over” attitude. Though I didn’t try to persuade them at the time, I thought they were being short-sighted. Both groups might find themselves in a caregiving situation.

HBB: Is this book best purchased once the trouble begins, or should I have it on the shelf when mama goes on Social Security?

BM: The book is best purchased (and read) before the trouble begins, and then put on the shelf to both refer to and share with others when the trouble begins.

BTB: It would probably be best to have it on the shelf when any close relative goes on Social Security or Medicare. However, human nature being what it is—not proactive, most of the time—at least it would be good to have it when “the trouble begins,” but hopefully before it gets too serious.

HBB: You have a lot of testimonials from caregivers. How were they similar?

BM: There are a lot of common occurrences and problems:

  • Frequently stated reasons for assuming caregiving responsibilities include: having a sense of duty or responsibility; wanting to show appreciation; being an only child; being a daughter, being the “closest,” being a spouse.
  • Were there others involved? Were roles discussed and planned? How well were responsibilities shared?
  • Caregiving almost always involves increasing needs over time, and therefore, increasing stress and burden. The fewer resources available, the greater the difficulty. The most common recommendation: Get Help!
  • How was the caregiver impacted physically and emotionally? How did they cope? Was there lasting impact? Was the experience positive or negative, and—would they do it again?

BTB: They were similar in that, as it was for me (and to some degree my co-author), many of the caregivers were taken by surprise by the necessity to take on this role. Another similarity is that people generally don’t take on caregiving in a vacuum; they have jobs, volunteer responsibilities, and many other family obligations beyond those related to the caregiving. How they handle those potential conflicts, and what impact they have on the caregivers’ emotional and physical well-being, are another component common to caregiving. Deciding how to share responsibilities effectively with other family members is another challenge many caregivers face.

HBB: How were they different?

BM: One of the main differences in the caregiver testimonials revolved around the variables of the caregiving situation and in the approaches used to meet needs. Was caregiving long distance? Did the care receiver stay in the home, move into the caregiver’s home, or move into a facility? Did the caregiver continue to work? Was the caregiver providing care to others? Differences were impacted greatly by the level of cooperation in the family unit as well as the value systems of everyone involved.

BTB: All caregiving situations are alike in some ways, buteach one is individual and different. What is the reason the care receiver needs care? What was the relationship between the caregiver and care receiver before the need for caregiving arose? What are their personalities and ways of coping with stress? As Barbara Matthews said, there are also situational differences, such as where the care receiver is, what other responsibilities the caregiver has, who else is involved in the care, and how cooperative is the relationship with the main caregiver.

HBB: What’s the single toughest thing to deal with in these situations?

BM: This is a tough question to answer! I think that when we get involved in caregiving, we have a certain set of expectations, and that the reality of caregiving just doesn’t meet those expectations. Caregiving is incredibly difficult; the burden often grows to levels well-beyond anything we imagined, and “the only end is to lose your parent.”

BTB: That’s hard to answer, but probably the emotional and physical fatigue and sometimes depression and anxiety that come from balancing many responsibilities along with those of caregiving. It’s hard to do all that has to be done when one is exhausted or depressed. 

Another tough thing to deal with is the second-guessing—not only on the part of other family members who may be doing a lot less than the caregiver but also on the caregiver’s own part. Feelings during and after the caregiving that you might have done better for the care receiver is terribly difficult.

HBB: Is there anything you would change about your own caregiving situations?

BM: I would make NO assumptions, especially about the involvement of “the others.” I would try to get an accurate picture of exactly what all involved parties could and would do, and draw up a contract that would explicitly define commitment and shared responsibility.

BTB: I would have expressed my expectations of the professional caregivers ahead of time, rather than retroactively, calmly rather than in anger. I would also have sat down with my brother to discuss how we could divide the responsibilities, rather than resenting his relative lack of involvement (other than visiting). Keeping things inside was not good in either aspect of the situation.

HBB: Are you making any appearances regarding your book?

BM: I held a “book discussion group” for the “Boomer and Beyond” program at Gold’s Gym, Linglestown, PA.I am in the process of scheduling an event with the “Lifeways” program at Messiah Village, and possibly with Homeland Hospice.I would like to do another event with Sunbury Press since the “First Friday” event literally “washed out.”

BTB: Yes. I have done a presentation at an area synagogue for a volunteer group that does hospital visitations but also sponsors a few elder-care programs a year. I spoke for a while, and then oversaw a very lively discussion among a group of caregivers. I will be approaching a major social service agency that sponsors caregiving support groups to see if I can lead a discussion in one of them. In September, I will be doing a formal book launch, co-sponsored by the DC chapter of my alma mater (Barnard College), at which I will speak about the book and lead a Q&A. In 2015, another author (a book about downsizing) and I will be doing a presentation for the DC Senior Resource Group. I hope other opportunities will arise as well.

What to Do About Mama is available wherever books are sold:

List Price: $19.95

6″ x 9″ (15.24 x 22.86 cm)
Black & White on White paper
230 pages

Sunbury Press, Inc.
ISBN-13: 978-1620063156
ISBN-10: 1620063158
BISAC: Family & Relationships / Eldercare

For more information, please see:

http://www.sunburypressstore.com/What-to-Do-about-Mama-9781620063156.htm

Meet Sunbury Press’ Owner Lawrence Knorr! by Tammy Burke

http://glvwgwritersconference.blogspot.com/2014/03/meet-sunbury-press-owner-lawrence-knorr.html

LvK by Tammi KnorrHow delightful having you back at the “Write Stuff” conference again! And wow! Is it coming up fast. Anything new and exciting you can share regarding you and/or the Sunbury Press?  
 
Lawrence Knorr: Yes!  It is an honor to be asked back. It is hard to believe two years have passed since the last time! Sunbury Press just completed its best year ever from a sales perspective. We continue to grow and succeed in a very tough, competitive environment. We are celebrating our tenth year in business in 2014 — but I can tell you it feels like 100 years! We’ve transformed ourselves twice in that span — caterpillar, cocoon, butterfly — what’s next? Most recently, we have seen ebooks peak, their growth rate slowing, while independent bookstore sales have picked up. While our Amazon business has continued to grow, other channels are growing faster. We have dubbed 2014 our “Year of Collaboration” focusing on ways our 120+ authors can experience better results by helping each other and by working together in teams. So far, there has been a lot of positive energy. We also opened, February 1, our first company bookstore in Mechanicsburg, PA, where our headquarters is located. Our goal was to provide a storefront for all of our books — and a venue for our authors to meet the public. We really want to be an important part of the local community for our local and regional authors — and provide another option to our more far flung partners. It’s a great place to meet prospective authors and to talk about books with the general public.
Based on your webpage, I understand the your company holds a “Continue the Enlightenment” mentality from the 18th 3609278century and the “Age of Reason.” Could you expand more what that means to you and to the Sunbury Press?
 
Lawrence Knorr: “Continue the Enlightenment” is a motto that represents our mission statement. Simply put, we are a publisher of diverse categories, but we are always seeking to bring new perspectives and voices to the marketplace. The Enlightenment was about a new order of things — not unlike what is happening in publishing today. The old order governed by a strong center of control is being challenged by more democratic ideals. This is what the independent publishing movement is all about — whether doing it yourself or with an independent publisher. We are experiencing an era of rapid democratization of the publishing industry. If only Hugh Fox had lived a little longer! I’ll never forget the day he called me – Hugh Fox – one of the founders of the Pushcart Prize. He revealed he was dying of cancer and offered me the opportunity to publish his remaining works. He said Sunbury Press was exactly the kind of publisher he was looking for. I was very grateful for his offer, and encouraged him to spread the dozen or so works around to other presses, keeping two of them for ourselves. Hugh liked the motto, and we think it is very appropriate at this time.
What was the motivation to start the Sunbury Press? What makes it different than other publishing companies?
 
Lawrence Knorr: I started the company in 2004 because I wanted to publish some family histories. I didn’t want to pay someone else to do it, so I Ambit_Island_Series.inddembarked on figuring out how. While this was only ten years ago, it was when vanity presses were a cottage industry and print on demand and ebooks were in their infancy. I just wanted to sell some books at cost to family members. But, I really enjoyed it and realized I could publish other books — not just my own. Two hundred and twenty titles and one hundred and twenty authors later, we have really grown thanks to our business model and our philosophy. We are different for several reasons:
1) We are very tech-savvy. My wife and I both have long careers in IT and understand the Age of Content and the importance of search engines, ecommerce and mobile commerce.
2) We do NOT charge for services. Many publishers are experimenting with vanity, hybrid or subsidy models. We refuse to go in this direction, instead making our money by selling books.
3) We have editors working for us as employees of our company. We take quality very seriously.
4) My wife and I are also photographers and digital artists, able to design book covers, marketing materials, graphic designs, web content, etc.
5) We are “generalist opportunists” — working in a broad number of categories. We understand the advantages of breadth and scale to the economic sustainability of an enterprise.
6) We love what we do. I really enjoy working with authors to bring their work to the marketplace. It tickles the soul.
 
tsarr_pubI was wondering…Is there anything in particular you are looking for in an author and his or her manuscript?
 
Lawrence Knorr: Quality Manuscript + Motivated Author + Publisher = Success
We are always looking for high quality manuscripts — in a variety of fiction and nonfiction categories. Quality is more than just well-written / grammatically correct. Quality is about fresh ideas, new found truths and entertainment. We like material that brings value to our readers.
We like to gauge an author’s motivations. Gone are the days of sitting at a typewriter, mailing a box of paper to a publisher and then waiting by the door for the checks to arrive. Authors need to be involved in their success. While we provide editing, design, formatting, ebook creation, printing, distribution, marketing, etc., we do best when authors are out and about advocating their work and promoting themselves. We are an ideal option for authors whose work is good enough not to have to pay to publish — who want to be writers and not start their own publishing businesses. Most writers are not business savvy. We bring the business expertise to the mix.
 
Anything you’d like to see more of? Anything you’d like to see less of?
 
ktcw_pubLawrence Knorr: Thankfully, the vampire craze has past. There’s probably a metaphor somewhere in that regarding the publishing industry! We are always looking for more history and historical fiction — more clever YA and more entertaining police procedurals and mysteries. We like good literary fiction too! We’ve had a lot of inquiries about poetry — something we rarely publish.
 
Do you work with authors to help them increase sales? Or do you allow them to do that for themselves?
 
Lawrence Knorr: We generate our revenue exclusively from selling books. So, we are ALWAYS looking for ways to sell more books — whether a new channel to open, a new retailer to call upon, a new country to access, or an author’s activities. As I stated in the opening, we have dubbed 2014 the “Year of Collaboration” and are seeking new ways to collectively leverage our scale. There are opportunities for Sunbury Press authors to go beyond our activities and their individual efforts — to work together within a category or region.
 
I understand you have authored eight books on regional history. Could you tell us more about them? What were their inspiration.  
 
JFR_fcLawrence Knorr: Where did I ever find the time? My early books: “The Descendants of Hans Peter Knorr,” “The Relations of Milton Snavely Hershey,” “The Relations of Isaac F Stiehly,” “General John Fulton Reynolds,” “The Relations of Dwight D Eisenhower” and “The Hackman Story” were family history / genealogy focused. I wanted to write about my relations — a very deep and rich history linked to important people and events in Pennsylvania and the nation. While researching at the Lancaster County Historical Society, I also stumbled upon the journal and letters of my great uncle David Bear Hackman, describing his adventure to California for the Gold Rush. I edited and contextualized this treasure into the book “A Pennsylvania Mennonite and the California Gold Rush.” My more recent works have been collaborations:  “Keystone Tombstones Civil War” with Joe Farrell and Joe Farley — about famous people buried in Pennsylvania who played a part in the Civil War and “There is Something About Rough and Ready” about the village in the heart of the Mahantongo Valley at the center of that region’s Pennsylvania Dutch culture. I have several other projects under way for release in the coming years: “The Visiting Physician of Red Cross” – about the career of Dr. Reuben Muth of Red Cross, PA (I have his collection of visiting doctor records from 1850 to 1890), “Palmetto Tombstones” — about famous people buried in South Carolina, “Scheib of Shibe Park” — a biography of the former Philadelphia A’s pitcher — and youngest American Leaguer ever — Carl Scheib of Gratz, PA.
 
Being born and raised in the Susquehanna Valley myself I was wondering if you’ve done anything regarding Sunbury, particularly the Hotel Edison or Lewisburg?
 
Lawrence Knorr: We borrowed the name Sunbury from the town in Pennsylvania because it was near the Mahantongo Valley — and I liked the name. But, that’s about as far as it goes. We have yet to publish anything about Sunbury, the town in Pennsylvania or nearby Lewisburg. However, our book “Digging Dusky Diamonds” by John Lindermuth is about Shamokin, PA and the nearby coal regions. Our best-selling “Prohibition’s Prince” is about the famous moonshiner Prince Farrington from Williamsport, PA.  Our “Keystone Tombstones” series spans the entire state and often touches on historical figures from the Susquehanna Valley.
 
Do you have favorite time period and place regarding history?
 
Lawrence Knorr: I teach Comparative Economic and Political Systems at Wilson College once a year. I really enjoy teaching this class because it allows me to span economic history from classical times to present. My favorite time periods / places are the Roman Empire in the first few centuries AD and 19th and early 20th century America. I am intrigued by our industrialization in the early 1800s — and the entrepreneurship and personal responsibility that was present. Most of the people living today would feel very insecure without their comforts, insurances and government safety nets. I long for that time when individual hard work and creativity could amount to something tangible — and when we relied on ourselves, our families, our religious institutions and our communities.
 
What did you like best about holding the office of president for MidAtlantic Book Publishers Association (MBPA)?
 
Lawrence Knorr: I was honored to be elected the President of MBPA for one year. I met a lot of great people, including my predecessor Mary Shafer. My goal was to make sure our organization survived the struggles it was going through and could become sustainable. The new team that formed was very motivated to do so, and they continue on without me. Unfortunately, the demands of my growing business prevent me from volunteering at this time.
Your digital photography is quite beautiful. I particularly enjoy your vibrant use of color. How long have you been practicing this art and I’m curious…how many book covers have you designed?
 
Lawrence Knorr: Thank you! I’ve been a photographer since I was 12 years old. I began showing my work in 2006, after a local gallery liked my attempts at “Photo Impressionism.” I was one of the pioneer artists who was trying to make photographs look like paintings. My work has been shown around the country and has won awards — and is in collections and even a museum or two. While I have not been as active at showing my work, I have designed over 100 book covers over the last three years. My wife says they are getting better!  I really enjoy doing it, and most of the authors are very pleased with the results.
 
What are your thoughts on selling internationally? Do you find that foreign bookstores cater to the same reading choices as here in our area?
 
Lawrence Knorr: We sell our books in at least a dozen other countries — UK, France, Germany, Spain, Italy, Japan, Australia, India, Mexico, Canada, Brazil, Taiwan … even Lebanon! We’re developing expertise in foreign rights as well as foreign distribution. We have found the rest of the world lags the US in eBook adoption — and still have a very strong book retailers. We’ve had the most success in the UK, for obvious reasons – but have also broken through where our titles touch on target markets.
 
I want to thank you for taking time out for this interview, Lawrence. We look forward to seeing you soon!
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Lawrence Knorr has been involved with book publishing for fourteen years. His  company, Sunbury Press, Inc., headquartered in Mechanicsburg, PA, is a publisher of trade paperback and digital books featuring established and emerging authors  in many fiction and nonfiction categories. Sunbury’s books are printed in the USA and sold through leading booksellers worldwide. Sunbury currently has over  120 authors and 200 titles under management.
Lawrence has taught business and project management courses for ten years, and is the author of eight books. He is also an award-winning digital artist, and has designed dozens of book covers . Lawrence is the former President of the MidAtlantic Book Publishers Association (MBPA)
Most interested in U.S. & World history and other nonfiction (sports,
professional, hobbies) — also historical fiction, mystery/thriller.

Will consider YA fiction, contemporary and historical romance, horror (no
vampires), literary fiction.

Not looking for children’s picture books and poetry at this time.

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Tammy Burke, GLVWG member, 2011 conference chair and past president, has published around 400 newspaper and regional magazine articles. She has interviewed state and local government officials, business and community leaders, everyday folk and celebrities, in addition to helping write scripts for over a dozen television commercials and writing various business communications. Currently, she is in the revision stage for her first YA fantasy adventure book, the first in an intended series. When not writing, she works in the social service field and is a fencing marshal in the Society of Creative Anachronism (SCA).