My mother's recent death, as she gave up at last to Alzheimer's, has reminded me again of the importance of the caregiver role for adult children of elderly parents. One of my sisters took on that role for Mom through the years of struggle, visiting her regularly in the nursing home and handling the many details that need to be attended to. The other siblings visited when we could, paying a debt we incurred a long time ago from Mom and Dad and the good childhood they gave us.
It was eight years ago that I had the role of caregiver for Dad as he fought his decline, raging against the night with a passion that Dylan Thomas would have admired. That was a most challenging year for me, the difficulties of the task almost overwhelming me then and the ramifications of that year resonating for me still in sibling troubles that I now realize will probably never end.
I wrote a book about those challenges and my stumbling efforts to meet them and I'll post that book's front page in here. But what I mainly want to post tonight is a readings list I developed as I worked on that book. I hope this is helpful for those of you who are facing similar challenges, trying to do the best you can for parents you love. Here's the list:
Some Useful Sources
If caregiving comes your way (whether your parent or parents were firefighters, physicians, business people, homemakers, teachers, performers or professional athletes), there are many good sources for information and I urge you to start the process of caregiving by finding out as much as you can as soon as you can about what caregiving is, what challenges you and your elderly parents might face, and how you might meet those challenges in a way that’s best for your parents, your family, your siblings and yourself.
From a personal readings list of some fifty-four books on caregiving and its challenges, and many dozens of websites and magazine articles, here are some books, sites and articles that I found particularly useful for helping me better understand my own particular situation.
Some Excellent Books
1) Coping With Your Difficult Older Parent: A Guide for Stressed-Out Children, by Grace Lebow and Barbara Kane, with Irwin Lebow (Quill, 2002).
“Coping” is my favorite of the many books I read after my time spent as a caregiver. Lebow and Kane’s guide opens with a Difficult Parent Questionnaire” and then begins to offer techniques for handling temper tantrums, irrational demands, abusive language, manipulative and controlling behaviors, and many more. Highly, highly recommended.
2) The Caregiver’s Essential Handbook, by Sasha Carr, M.S., and Sandra Choron (Contemporary Books, 2003)
This well-organized handbook allows a new caregiver to look up information as needed, including discussions of home safety, crime protection, financial matters, health and medical treatment, communication, and taking care of yourself as caregiver. Highly recommended.
3) Are Your Parents Driving You Crazy? By Joseph A. Ilardo, Ph.D., LCSW and Carole R. Rothman, Ph.D. (VanderWyk & Burnham, 2001)
Ilardo and Rothman focus their excellent book on methods for resolving a variety of confrontations between caregivers and elderly parents. After providing a basic method for communication, the authors pose twenty-five typical dilemmas, ranging from “My father can no longer drive safely, but he refuses to stop,” to the one I found most relevant to my own situation, “My father’s frequent phone calls are just too much.” The plans that are offered won’t always work, but knowing the dilemmas are common is helpful, and being given a tool that may work is helpful, as well. Highly recommended.
4) Elder Rage, or Take My Father…Please! By Jacqueline Marcell (Impressive Press, 2001)
Author Marcell describes with honesty, anger, humor and sympathy her struggles with her elderly father as he declined mentally and physically. Several very useful appendices at the back of the book include “Behavior Modification Guidelines,” “Long-Term Care Insurance,” “Ten Warnings Signs of Alzheimer’s Disease,” and a very direct and useful “A Physician’s Guide to Treating Aggression in Dementia,” by Dr. Rodman Shankle.
5) Necessary Losses, by Judith Viorst (The Free Press, 1986, paperback ed. 2002)
A best-selling book and deservedly so, the book’s subtitle says it all: The Loves, Illusions, Dependencies, and Impossible Expectations That All Of Us Have to Give Up in Order to Grow Up. For me, particularly relevant chapters include “Good as Guilt,” which helped me understand the re-emergence of old sibling rivalries; “Family Feelings,” which helped me understand family myths and their power over us; “Love and Mourning,” which helped me understand why I never knowingly mourned my father’s death; and “I Grow Old…I Grow Old,” which helped me understand my father’s “garrulous, self-centered, vapid, querulous” behaviors. You will find your own best connections to various chapters in the book. Highly Recommended.
6) Imperfect Control, by Judith Viorst (The Free Press, 2002)
Viorst continues the discussion from “Necessary Losses,” focusing in this book on power struggles between children and parents, husbands and wives, and between siblings. Learning to accepting our imperfections is enormously useful advice and the book is the stylistic equal of “Losses.” Highly recommended.
7) What Are Old People For? How Elders Will Save the World, by William H. Thomas, M.D. (VanderWyk & Burnham, 2004)
Thomas embraces the knowledge and experience that comes with aging and decries our society’s focus on youthfulness. His understanding and sympathy for the elderly is helpful not only in appreciating many of the more positive aspects of life that can only be found in older people, but also in helping caregivers understand the thought processes and emotional needs of the elderly. A chapter on “Place and No Place,” which talks about the need for a place to belong and the difficulty of moving the elderly from know to unknown surroundings, is especially useful and interesting.
8) Reconciliation Road: A Family Odyssey, by John Douglas Marshall (Syracuse University Press, 1993; Hungry Mind Press, 1996)
The author travels large parts of America searching for the truth about his famous grandfather, S.L.A. (Slam) Marshall, and finds himself confronting his own strengths and weaknesses as he struggles with the realities he finds about his grandfather. An interesting, heartfelt, memoir.
9) How to Say It to Seniors: Closing the Communication Gap with Our Elders, by David Solie, M.S., P.A. (Prentice Hall Press, 2004)
Solie explains the differing agendas and contexts between the elderly and their younger children or other caregivers. I found the discussions of the effect the aging process has on communication and on the understandable need for control and for a legacy particularly relevant and informative. The strategies offered in Part Three are, to my experience, on the optimistic side, but it is important that the effort be made.
10) The Birth Order Book: Why You Are the Way You are, by Kevin Leman (Fleming H. Revell, fourth printing, June 2005)
Leman makes a convincing case for the impact birth order has on relationships between siblings and between children and parents. You will find yourself in these chapters, whether you are an only child, the first born of several, the middle of many, or at any other place in the family pecking order. The point is: there is a pecking order. The further point is that as children we work out our order in the family, but deep-seated resentments from the acceptance of that order can come out decades later under the stress of caregiving, as children vie for parental approval and the re-establishment or improvement of their place in the familial power structure. Interesting and informative.
And then there are two baseball books that I found extraordinarily useful to a discussion of caregiving, mythmaking, sibling rivalries and the national pastime. They are:
11) Ground Rules: Baseball & Myth, by Deeanne Westbrook (University of Illinois Press, 1996)
Westbrook talks about baseball’s role in American mythology, focusing on fathers and sons, mythic heroes, and the classis archetypes of American mythology as they are found in baseball myth. For a family steeped in baseball, an understanding of these myths and their use (and misuse) was important to in the caregiver role and, after, with my siblings. Highly recommended for general reading on baseball.
12) Past Time: Baseball as History, by Jules Tygiel (Oxford University Press, 2000). Tygiel’s hugely interesting research into the game’s realities and how they have enlarged through myth is fascinating, and his understanding of the game’s role in American culture is equally absorbing. Highly recommended.
Some Excellent Websites:
1) The American Association or Retired Persons (AARP) site for caregiver is useful and informative in matters pertaining to physical, emotional and financial care of the elderly. The site is: http://www.aarp.org/families/caregiving/caring_help/a2003-10-27-caregiving-newcaregiving.html
2) The Area Agency on Aging for Pasco and Pinellas counties in Florida offers a wealth of information on caregiving at this site: http://www.agingcarefl.org/caregiver/caregiver
3) The Family Caregiver Alliance offers information and guidance at this site: http://caregiver.org/caregiver/jsp/home.jsp
4) The Caregiver’s Home Companion site is a subscription-based site that costs $19.95 yearly for the on-line version and $29.95 yearly for the printed version. The site is: http://www.caregivershome.com/
5) Children of Aging Parents (CAPS) is a national organization out of Pennsylvania that focuses on the needs of caregiving adult children of elderly parents. The site is: http://www.caps4caregivers.org/
6) The very useful Family Support Network, out of Milwaukee, is at this site: http://www.caregiversupportnetwork.org/ . There is excellent legal and financial advice on this site.
7) Aging Parents and Elder Care, at this site: http://www.aging-parents-and-elder-care.com/ offers beginning caregivers a very logical progression to follow from First Steps through Checklists, Daily Living and more. Extremely useful site.
8) This glossary from the Central Ohio Area Agency on Aging (COAAA)is the best concise glossary of terms that I found on the Internet, at: http://www.coaaa.org/index.php?go=resource&pg=glossary
9) Writer and consultant Thomas Day offers a wealth of information at his site, including defining in a very useful fashion the difference between formal and informal caregiving, and the various levels of each. His discussion of The Plight of Informal Caregivers is excellent, at this site: http://www.longtermcarelink.net/eldercare/caregiving.htm
10) The Western Reserve Area Agency on Aging offers an excellent planning guide for new caregivers at this site: http://www.psa10a.org/Caregiving/planningforcaregiving.asp