by Jacqueline Marcell
Well, the subtitle could be a clue—a takeoff on Henny Youngman’s famous line “take my wife...please!”; this book is not for the faint of heart. A perusal of the table of contents—Chapters like “If It Isn’t Ten Things-It’s Twenty,” “Honey I Blew Up the House,” “Jacqueline, You Ignorant Slut,” “In A Oh-My-Goddadivida, Honey” and “To Be Demented or Deceptive? That Was the Question” provide no clue about the serious nature of the book and the invaluable contribution it makes for so many people caring as best they can for their spouses, parents or other loved ones suffering from dementia. Despite the numbers and trends and despite the fact that so many of these relationships, like Ms. Marcell’s, have difficult family pasts, there are only a handful of relatively good books written on the subject by those actually on the front line of the struggle with dementia. This is a worthy contribution to the subject and we highly recommend this book, particularly for anyone dealing with a loved one with dementia.
I will be honest: this book is not for everyone because dementia is difficult to diagnose and to prescribe easy fixes. “One size does not fit all” in almost any area, but dementia presents especially difficult issues for everyone involved with the patient; and trouble in the family relationships prior to the onset of dementia only complicates matters further. Some of the advice Ms. Marcell gives worked for her but may not work for others either because of differences in the patient or differences in personalities of the caregivers. Some readers may even take offense at her use of humor with such a serious and sad subject with far too many unsatisfactory if not tragic conclusions.
However, I choose to grant her license to use her style and approach precisely because it works for her—and it is HER story. If it is to help others involved with dementia, the reader must find what works for them and the guidelines and experiences in this book offer wonderful suggestions for each reader to decide for him or herself what to consider, to use, to modify or to ignore as it works for them given their own personalities, relationships and patient circumstances. I would rather read one well-intentioned book from someone in the “ring of fire” than a dozen books by “experts” who have never been a personal participant in a struggle involving care for the elderly. No one can argue that Ms. Marcell has waged a marvelous first-hand battle and has made incredible progress with her parents. Based on everything she did, both right and wrong as she freely shares, she offers clear advice stemming from her successes , failures and the heartwarming outcome for her, her parents and for those she touched and who touched her throughout the journey. While the book ends with her parents still alive (email to request the 'Further Adventures of Mariel and Jake' via www.ElderRage.com), and while not everything was perfect at that time, her parents improved unbelievably and her relationships with her mother and particularly her father are better than ever because of what she was willing and able to do as a daughter who, like most of us, bring nothing to the table in terms of training in healthcare generally or elder care specifically.
So, get on board with Ms. Marcell; read about Dr. Killjoy, Nurse Killya, , Brainless Bambi, Dr. Quinn, Medicine Impersonator, Dr. Endure (a shrink of course) and the main antagonist, her Dad Jake (also known as [Doctor] Jovial Jakell, [Mr.] Horrible Hyde, Ivan the Terrible and Jake Lemmon among others.) Read how she had to subordinate so many personal needs and wants along the way, knowing that her parents “would never want [her] to be so unhappy”--so common among children caregivers of elderly parents; read about the day that she faced the decision whether she could still continue her caregiver role in light of her Dad’s physical violence and verbal abuse toward her and others; read about the difficulty she experienced as we all do in finding good ancillary caregivers; read about the difficulties she encountered with well-meaning doctors and nurses—some who “get it” and too many who don’t; read about medications and how and what they do; and read about Ms. Marcell’s experiences with state and federal agencies, both good and bad, who offer help as best they can to those “in the storm.” It’s all there and more.
Specifically, read and make notes on the section about 20/20 hindsight (pp 267-270), which offers an invaluable 15-point (by my count as they are not numbered) checklist based on what she “would have done differently” knowing what she knows today. Study her Behavior Modification Guidelines, which include her 6 Tips for what to do When a Difficult Elder Displays Good Behavior and her 6 Tips for what to do When a Difficult Elder Displays Negative Behavior (also known as tough love); Immerse yourself in her 25 situational Tips covering How Do [You] Handle [Your] Elderly Loved One Who…; embrace Jacqueline’s Top Ten Recommendations, which only someone in her place could devise; and, finally, don’t miss the Addendum by Dr. Shankle entitled A Physician’s Guide To Treating Aggression In Dementia. All of these, along with the Recommended Reading and Valuable Resource sections make the book worthwhile and they are just the “icing on the cake” given her remarkable story of courage and indomitable love.
I leave you with Ms. Marcell’s own words about her journey: “Isn’t it something—my life’s most heart-wrenching experience has finally turned into a mission possible. Everything I have gone through can now become blessings for those who struggle to manage their elderly loved ones.” Our recommendation is that you get a copy of this book and read it at least twice if you are involved in elder care or think you might ever be responsible for the care of a loved one, particularly one who is experiencing dementia in its various forms. You will receive a blessing for sure.