Jacqueline Marcell is a passionate eldercare advocate, speaker, radio host, and the bestselling author of “Elder Rage”, endorsed by 50 famous people including Regis Philbin and Hugh Downs. She’s been the cover story of the AARP Bulletin, featured in numerous publications, interviewed on TODAY and CNN, and has spoken before the Florida House of Representatives. Her Web site, ElderRage.com, includes one of most extensive list of resources for eldercare you may ever find in one place.
This is an excerpt of an interview with Marcell, who shares her story of trying to save the life of her beloved mother, who’d had a heart attack eleven years previous and who’d been cared for by her father. But when her mother nearly died from his inability to continue that care, Marcell stepped in to help, only to have her once-adoring father turn vehemently against her. She had numerous healthcare professionals examine her father, only to be told they couldn’t find anything wrong with him. In spite of the tremendous harsh treatment from her father, she persisted for nearly a year as her father cursed and threw her and every caregiver she hired to help him out of the house. Finally, at her wit’s end, she stumbled upon a neurologist specialized in dementia who after a battery of tests including blood, neurological, memory and P.E.T. scans, diagnosed Stage One Alzheimer’s in her father-something all his other doctors missed entirely. With medication to slow the progression of the disease and also balancing his brain chemistry properly, and the use of some creative behavior modification, Marcell was finally able to turn a seemingly impossible situation around. The experience was so harrowing it compelled her to write her book to help others from going through a similar situation or from “getting so frustrated they commit elder abuse!” The result is, “Elder Rage, or Take My Father… Please! How to Survive Caring for Aging Parents”, written she says with humor to make a tough subject palatable. The riveting success story gives caregivers solutions and hope that they, too, can overcome their caregiving challenges. Included is an extensive addendum by a renowned dementia specialist, which helped make the book required reading at numerous universities for courses in geriatric assessment and management.
DL: In your book you talk about your father being able to hide his bad behavior when you took him to a doctor…have you ever had any health care professional tell you how that could occur? Could it be that the fear of being discovered could be enough of an adrenaline rush to make him snap out of it temporarily?
Marcell: What fooled me was that my father always had a bad temper and he could always control it in public-it was the dirty little family secret. I was used to that, but what I was not used to was being the target, as he adored me and never raged at me before. He was addicted in trapped in his own bad behavior of a lifetime that was getting distorted and intensified intermittently with a “dash of dementia”. And yes, I think the fear of being “found out” that he was starting to lose control caused him to focus on being right there with healthcare professionals. And let me tell you–he could be oh-so charming when he needed to. And, because the dementia was just starting, and because his doctors were not specialists in dementia, let alone trained in how to recognize the early signs of it, his odd behaviors were just called “senior moments” due to stress and getting older. This is extremely common–I hear it all the time.
DL: What do you think was in your personality that keep you from just running away from it all, when you dad would be abusive to you…was it just love…or something more?
Marcell: You know, my parents were always there for me for everything I ever did my whole life-they were my cheerleaders I could count on through thick and thin. There was no way I could leave my sweet mother alone with my father and have her accidentally die from his inability to properly care for her any longer. I had to stay there and figure it out. Aaaand, I inherited a “whole lotta” determination and perseverance from–my father! It really was a test of wills.
DL: I see that you were also able to get your father to go to an adult day care facility. How did that work out for him and you? How important do you think these centers are?
Marcell: Ohhh, Adult Day Care was such a HUGE help, as it gave my parents all kinds of fun thing to do all day, which gave me a much-needed break so I could get so many other thing done. I think Adult Day Care is one of the MOST important parts of managing elderly loved ones, but people don’t know about them and don’t use them as much as they should-often because the elder refuses to go. Dad hated it at first, said everyone was too old (no one was older than him), and he tried hard to sabotage it. I kept persevering and he finally got into the routine and then he had his buddies there and really enjoyed the activities they had-he ended up loving it. And, being busy all day finally turned around his ‘sun-downing’ so he’d sleep through the night-which meant so would Mom and I!
DL: Do you think that family physicians are getting any better at looking for dementia or at least being more open minded?
Marcell: I WISH! Well, maybe a little, but since they are so busy with so many patients and aren’t trained in EARLY diagnosis, they don’t have the luxury of time nor the knowledge how to perform all the appropriate and needed tests to uncover it early. ANYONE, a ten year old, can diagnose Alzheimer’s in Stage Two when it is blatantly obvious that something is wrong, but since the disease starts so slowly and so intermittently, and the day the patient goes to the doctor they are always “normal”, most people go undiagnosed for a long time, usually until after a crisis. The family is most often in denial, saying that their loved one has always had a bad memory or been difficult or whatever, and they don’t even know to insist on a specialist early enough.
DL: Do you have any thoughts on the President’s health care reform?
Marcell: I am very encouraged, sounds good so far, because SOMETHING just has to be tried-what we have now is such a mess. We won’t know until the final details are fully debated. It is a shame we have to be in such a horrible economic crisis right now while they are trying to change a complete system! And, lobbyists will be thwarting every little piece of it too. I think it will take a while to get anything passed and even longer to get implemented properly. But, I do think it will happen and we will all be a lot better for it eventually.
DL: What would you say are some good resources to find out about health care reform and it’s relation to care givers and elder care?
DL: What’s up and coming for you…any new books, etc.
Marcell: No new books! “Elder Rage” was my first and probably my last book too. I wrote it to make a difference in eldercare awareness, to wake up professionals, and to help caregivers cope, not really to become a writer-although I write a lot of articles for AgingCare.com and ThirdAge.com. And since my BREAST CANCER (yes, because I didn’t get my mammogram on time being consumed with my parents) I have reduced everything and everyone that I don’t need or enjoy. So, what I LOVE doing most of all is speaking at events. I have presented at 200 and can talk for about six hours without notes-so I am focusing on that! http://www.elderrage.com/speakingengagements.htm. I also enjoy hosting my radio show, “Coping with Caregiving” heard live and archived at http://www.wsradio.com/CopingwithCaregiving. I am always looking for interesting guests, so if any of your readers have an interest, just email me at [email protected] and I will send the details!
Jacqueline Marcell is on a mission to raise awareness about eldercare, caregiving, and the importance of early diagnosis of Alzheimer’s Disease. She asks everyone to please help NOW by contacting their congressional representatives while our government is reforming the healthcare system. Simply tell your eldercare story and why their help is so needed.
To find out more about Marcell or to purchase her Book-of-the-Month Club selected book, see www.ElderRage.com.)