Helpful Books Blog (HBB) is very happy to have authors Barbara Matthews (BM) and Barbara Trainin Blank (BTB) drop by for an interview.
For 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
Sunbury Press, Inc.
BISAC: Family & Relationships / Eldercare
For more information, please see: