'Oh my God!' Lessons in caregiving from a pioneering baby boomer: interview with Jacqueline Marcell.

For staff who care for elderly dementia victims daily, it's easy to forget that the vast majority of caregivers--baby boomers typically in their fifties attending to elderly parents' needs in the home--don't have a clue. They struggle with messy chores, temperamental outbursts, weird behaviors, and communication shortfalls every day. They learn the hard way and eventually reach out, often blindly, for help.

Which brings us to the case of Jacqueline Marcell, author of a frightening, humorous, highly entertaining, and ultimately moving memoir called Elder Rage. Marcell was a highly placed executive with ABC Television whose parents were in their early eighties. Her father, Jake, who was slipping into the ravages of dementia, was taking care of her chronically ill mother, Mariel. Marcell says she got her first glimpse of the trouble to come when visiting her parents in their double-wide mobile home and finding their once immaculately kept home in a shambles.

What follows is her more than four-year chronicle of physical and emotional endurance, profound frustration, and fundamental loving commitment, written in a surprisingly lighthearted style, with traces of self-pity that understandably come but don't linger. The story ends on an upbeat note when a caregiving aide named Ariana--the 41st and last caregiver hired by Marcell--engages in successful behavioral modification with a raging, threatening Jake.

Since the publication of her book two years ago, Marcell says she's become "the poster child for eldercare awareness and reform." Although nursing homes and assisted living facilities don't play a direct role in her story, other than serving as "threats" to calm her misbehaving father, Marcell says she hopes what she learned about dementia caregiving--and herself--will benefit not only fellow boomers, but also caregiving staff in any facility. An engaging, chatty conversationalist, she discussed her last years with her parents, now deceased, with Nursing Homes/Long Term Care Management Editor-in-Chief Richard L. Peck.

Peck: In reading about your father's rages, a lifelong behavior pattern only aggravated by dementia, I was struck by how Ariana was able to figure out intuitively now to manage them. What was her secret?

Marcell: Ariana saved all our lives, and she is my "adopted daughter" for life. I'd have to say that we, as a family, had "trained" my father so that he could get away with his screaming and yelling throughout his life. Whenever he went into a rage, we yielded and reinforced it. When it came to dealing with him in what I now know was the beginning of dementia, Ariana's problem was to figure out what was going on--was he just being nasty, was it an episode of dementia, or was it both?

We decided to try a reward-and-punishment approach. If he persisted in his nasty behavior, she'd give him three warnings to stop, and then she would walk away and lock herself in her room and "disappear." When he begged her to come out, she would tell him that if he continued his misbehavior, he'd get no conversation, no companionship, or no dessert--or, worst of all, Morn would be removed from the home and hospitalized. This seemed to calm him down most of the time. it also helped that we were able to take him to adult day care--for which I am a wholehearted advocate--where he usually did well, although sometimes we'd have to go through the rewards/consequences routine to get him out of bed to go. Ariana also found that validating his frustrated feelings (doing Naomi Feil's work before we had even heard of her) sometimes helped to calm him. But the offer of his favorite ice cream worked the best to get him in the shower!

Many people have read my book, tried my techniques on their obstinate elders, and have sent me e-mails confirming that my approach has worked. Also, a friend of mine whose morn would berate him over the phone finally told her, "I love you, but moaning and groaning won't get my help. When you're ready to speak nicely with me, I'll be there." And when she does, he expresses great pleasure with this. He says he can't believe how well it's working.

I was pleased that Cameron J. Camp, PhD, at the Myers Research Institute at Menorah Park Center for Senior Living in Cleveland, validated my work, saying that people with early-stage dementia can learn new behaviors, as Dad was able to do.

Peck: You hired Ariana personally. Weren't home healthcare services of any help?

Marcell: The agencies wanted $18 an hour, and I needed round-the-clock help. I just couldn't afford it. And the agency personnel that did come would quit after a couple of days; Jake was just too difficult, and I guess they thought there were better ways to make their $8-an-hour wage. So I went the personal search route and, although the book doesn't go into all this--it would have to have been the length of War and Peace--I went through 40 caregivers before Ariana arrived. For the next four years I talked with her at least twice a day, often seven or eight times a day, to work things through. She and her family, who also helped out, were a godsend.

Peck: You refer to nursing homes only tangentially in your book, usually as a "threat" to Jake that he and Mariel would end up there if he didn't behave. Many people in your situation, though, may not have your time or resources and may feel they have no other option than a nursing home to care for a loved one.

Marcell: I thought they would have sedated him and strapped him down and eventually kicked him out. I wasn't about to let that happen, also, so many homes are understaffed. We have to start paying the people who work there a decent wage and recognize and applaud their efforts. My godmother went to a marvelous nursing home; they doted on her and took very good care of her. I remember visiting the facility and acting like an ombudsman--I'd check for urine smell, buzzers going off, what the kitchen was like, and so on. They were truly marvelous.

Peck: Aside from decent wages and recognition, what else do you think other facilities might need to bring them up to that level?

Marcell: I think staff has to be educated about the warning signs of dementia, how it progresses, and the diagnosis of Alzheimer's disease. I think they have to understand what could push someone to commit elder abuse--the frustrations are unbelievable--and they need to be trained in helping people deal with their emotions. I know that in my situation, there were times when I could have killed my father if there had been a gun in the house, particularly when he attacked me physically. I felt that way, even though I had always loved him--imagine if there isn't that much love in the family to begin with. I would also say that, even though medical professionals are trained not to get emotionally involved with patients and families, long-term care is really a personal business, a personal career. So put down the clipboard and give people a hug when they need one; what'll it cost you?

Peck: I was appalled by the sheer unprofessionalism and gullibility of some of the physicians you dealt with, who kept denying the severity of Jake's misbehavior--he was always on his best behavior with them--and blamed the problems on you and left you to deal with him.

Marcell: Yes, for example, there was Dr. Endure (not his real name), the head of the psychiatric hospital, who wouldn't acknowledge what I was saying about my father's behavior until I finally threatened him with a lawsuit. (I also told him that if this book is ever made into a movie, we would cast him with an actor who looks just like him, which also got his attention!) I think the problem, though, is that many physicians just don't understand dementia or Alzheimer's disease, and that "demented" doesn't mean "stupid." My father could be so manipulative--he always was--and Dr. Endure, not a dementia specialist, got snowed big time. People shouldn't assume that just because doctors have an "MD" after their names, they understand how to test for and treat dementia. One of the primary things I would do differently, if I had to go through this again, is go directly to a geriatric dementia specialist the first time I noticed odd behaviors.

Peck: What other bits of advice would you give to fellow boomers and staff caregivers who are entering this realm for the first time?

Marcell: Some of my closest friends, who are around my age and are highly educated, still don't understand anything about dementia or Medicare or Medi-Cal (California's Medicaid). They hear their family physicians speaking a language they don't understand and, not wanting to appear stupid, say "uh-huh" and hope for the best. And that's where the troubles begin. Beyond seeking expert help, they should know the 10 warning signs of dementia [see "Ten warning signs of dementia".]. Once they understand the disease process, they shouldn't focus on feelings of "when will this end?" They should make sure their loved ones are safe and getting proper care but should not give up on their own lives; nor would their loved ones want them to. They need to focus on the life that is left and try to maintain a sense of humor. I know the humor comes out in my book, although I didn't plan it--it's just me.

Peck: What's next for Jacqueline Marcell?

Marcell: I've spoken at 60 conferences around the country, and I have my own Internet radio program called Coping With Caregiving. My goal is to have a syndicated radio show featuring experts on dementia and long-term care who would field listeners' questions. But I'd want to keep it conversational and "edutaining." I'm seeking sponsors for it now.

Peck: It would seem that your prospects are pretty good.

Marcell: Awareness of eldercare is exploding, but people don't want to deal with it until they absolutely have to. I want to be the voice that people identify with, a caregiver who has been in the trenches with them, who understands their frustrations and offers them solutions and hope.

TEN WARNING SIGNS OF DEMENTIA

(1.) Recent memory toss that affects job skills. It's normal to occasionally forget assignments, colleagues' names, or a business associate's telephone number and remember them tater. Those with dementia, such as Alzheimer's disease, may forget things more often and not remember them later.

(2.) Difficulty performing familiar tasks. Busy people can be so distracted gum time to time that they may have the carrots on the stove and only remember to serve them at the end of the meal People with Alzheimer's disease could prepare a meal and not only forget to serve it, but also forget they made it.

(3.) Problems with language. Everyone has trouble finding the right word sometimes, but a person with Alzheimer's disease may forget simple words or substitute inappropriate words, making his or her sentence incomprehensible.

(4.) Disorientation of time and place. It's normal to forget the day of the week or your destination for a moment. But people with Alzheimer's disease can become lost on their own street, not knowing where they are, how they got there, or how to get back home.

(5.) Poor or decreased judgment. People can become so immersed in an activity that they temporarily forget the third they're watching. People with Alzheimer's disease could forget entirely the child under their care. They may also dress inappropriately, wearing several shirts or blouses.

(6.) Problems with abstract thinking. Balancing a checkbook may be disconcerting when the task is more complicated than usual. Someone with Alzheimer's disease could forget completely what the numbers are and what needs to be done with them.

(7.) Misplacing things. Anyone can temporarily misplace a wallet or keys. A person with Alzheimer's disease may put things in inappropriate places: an iron in the freezer or a wristwatch in the sugar bowl.

(8.) Changes in mood or behavior. Everyone becomes sad or moody from time to time. Someone with Alzheimer's disease can exhibit rapid mood swings from calm to tears to anger for no apparent reason.

(9.) Changes in personality. People's personalities ordinarily change somewhat with age, but a person with Alzheimer's disease can change drastically, becoming extremely confused, suspicious, or fearful.

(10.) Loss of initiative. It's normal to tire of housework, business activities, or social obligations, but most people regain their initiative. The person with Alzheimer's disease may become very passive and require cues and prompting to become involved.

Source: Alzheimer's Association of Orange County, California (as cited in Elder Rage).

For further information about Jacqueline Marcell and Elder Rage, phone [phone], [e-mail] or visit www. ElderRage.com. Her Coping With Caregiving Internet radio program can be accessed at www.wsRadio.com/CopingWithCaregiving.

To comment on this article, please send e-mail to [e-mail].