Talking With Jacqueline Marcell: Dementia and Elder Rage
The author of "Elder Rage, or Take My Father ... Please! How to Survive Caring for Aging Parents" learned about coping with Alzheimer's the hard way. She wants to make sure other caregivers have an easier time.
Care giving for a parent with Alzheimer's disease is notoriously difficult; care giving for a violent parent whose Alzheimer's goes undiagnosed can nearly kill you. The title of Jacqueline Marcell's book refers to different kinds of rage: her father's violent rage at her when she tried to help him and her ailing mother, her subsequent anger at him, and her rage at the eldercare system that failed to diagnose his early-stage Alzheimer's and provide assistance or protection. Thankfully, the book is also full of hard-won advice on how family care givers can get help.
Marcell, a television executive, took the plunge into care giving when she flew to the Bay Area to care for her mother, who was near death from an infection. Her father became erratic, telling Marcell he loved her one minute and throwing her out of the house the next. He had always had a temper, but he had never turned it on her or been violent. Now, suddenly, he did both. And Marcell found herself stuck in her parents' home for a year -- unwilling to leave her mother with a man who was incapable of caring for her and who alienated every caregiver his daughter hired, and helpless against her father's verbal and physical abuse -- until she was able to turn the situation around.
With the success of her book, Marcell now speaks about Alzheimer's and offers advice to others on her website and her monthly radio show, Coping with Care Giving. She spoke with Caring.com about how caregivers can get help for parents with Alzheimer's -- and for themselves.
Your parents both had Alzheimer's, and it was missed by one doctor after another in the late '90s. Do you think that's still a problem?
It's so pervasive, I can't even tell you. I was in a major metropolitan area and I was not directed properly. I'm not shy, I'm highly educated, and here I was begging for help, and yet that's what happened. It really takes a specialist to see it in stage I. I'm talking about in the beginning, when it is very intermittent. Anybody can diagnose it in stage II.
Your father was violent, but your mother wasn't. Tell me how the disease manifested itself in each of them.
Mom was sweet and lovely her whole life, Dad was difficult, and they both became more of that. People with this disease can be 180 degrees apart from each other.
There's an old saying: If you've met one person with Alzheimer's, you've met one person with Alzheimer's. I've lectured all over with some of the top minds in this area, and they believe that Alzheimer's will eventually be broken down into many, many subtypes as they learn more about it.
What was your lowest point as a caregiver?
When my father, who had never laid a hand on me in my life, had his hands around my throat. He was so infuriated with everything I was trying to do to help him and my mother. She had come home from the hospital, and I wasn't going to separate them -- the only thing these two lovebirds wanted was to be together – but he couldn't take care of her. So I knew that I had to have a caregiver there before I could go home. I finally got a gal trained, and he liked her enough. She was going to move in, and she asked if we had HBO. Dad said, sure, he'd get it.
But the day she was moving in, the subject of HBO came up, and he screamed and yelled, "I never said it was OK!" Then he took off his shoe and pounded it on the table like Nikita Khrushchev, and picked up a chair and threw it in my direction -- just went berserk.
My mom was there in the hospital bed in the living room yelling at him to stop. I put my head down as he was screaming more and more, and the phone rang -- it was the caregiver, who was helping an elderly couple next door that day. She said, "Are you OK?" And before I could even answer, he came from behind and had his hands around my throat. She could hear me choking and dropping the phone. Luckily, the back door was unlocked and she came charging in and got him off of me. I could barely get my fingers to stop shaking to dial 911. They got there fairly quickly, I guess -- in ten minutes -- but by then he was all calmed down and sitting on the couch, while I was crying.
Did the police have a sense of what was going on?
The officer said, "Mr. Marcell, how can we help you?"
He said, "I don't know why they called you. Everything's fine here."
So they probed a little further and saw the red indentation marks around my throat. Then he started shouting again about all the good things I had done to help them, and the officer said, "That's terrible. Did you choke her for that?"
And he said, "Yes, I did and I'll do it again!" And he came lunging toward me, and that's when they handcuffed him and put him in custody. And let me tell you, that was awfully, awfully hard.
They took him to the psychiatric hospital. The head of psychiatry there evaluated my dad and he was a peach, and then a judge released him.
So he was able to hide the violent side when he wanted to.
It's absolutely astonishing. The disease is very intermittent -- it comes and goes -- so when they've got to be on, they can. I'm talking about in the beginning of Alzheimer's, when people can pull it together when they need to.
How did you finally get someone to take his behavior seriously?
Finally, a year into it, the fourth time he got hauled off and they were going to release him again, I got on the phone with the same doctor at the psychiatric hospital and said I was going to sue and go public if Dad hurt my mother -- he had been trying to push her out of bed at that time -- or the caregiver, her son, or me. "And by the way," I said, "I'm writing a book about this and when it's made into a movie, I may have to change your name, but I'm going to make sure the actor looks just like you."
Well, the doctor held him for two weeks, and then he called me and said, "I see what you're talking about." Right about that time, somebody mentioned calling the Alzheimer's Association.
I thought, he doesn't have Alzheimer's. He knows what he's doing -- he doesn't want anybody in that house with Mom; he's been like that his whole life. All right, I'll call, but what could they possibly know that all these other healthcare professionals I've taken him to don't know?
Well, that was the call that saved my life.
How were you able to fix the situation?
They told me about the ten warning signs of Alzheimer's and referred me to a team of dementia specialists. The waiting list was very long, but I called every day to see if there was a cancellation, and finally there was. They did a battery of tests -- blood, neurological, memory, CT and PET scans -- and then diagnosed both of my parents with stage I Alzheimer's. So getting to the right doctors was the first big key to solving everything.
The second thing was getting the right combination of medicines -- medicine to slow down the dementia, which I could have gotten a year sooner if I had known, and antidepressants, which most people with dementia are greatly helped by. I'm not a big fan of medication, but once I got that medicine, I could get them up and out of bed and interested in life again. The third thing was getting my father treated with antiaggression medicine. So once the doctors got the right chemical balance in place, and we were cleaning up the diet, I was able to come up with behavioral techniques that finally worked.
Do the doctors that you consider to be experts in this area recommend a combination of drugs like that?
Yes, I would say that in the six years of my radio show, my column, my blog, and speaking at 150 conferences, I haven't heard any dementia specialist say, "Oh, that's not right." The only thing I've heard is not to use the antidepressant Paxil with dementia medication that slows down the progression of the disease, because Paxil can affect short-term memory and work against what you're trying to delay.
So I'm a huge advocate of people working medically to get the optimal results that they can, in terms of brain chemistry, before trying to get parents to accept adult daycare or a caregiver. Of course, when they're further into stage II or III, they may need a nursing home. But it's a long road to get there -- maybe five or ten years or more.
Was adult daycare a big help for you?
It was huge. Elders usually don't want to go at first, so it's got to be done gradually, but adult daycare gives the caregiver a break while they're busy with activities all day long -- socialization, nutrition, physical exercise, games, crafts. They come home from that and they're tired, so that helps everyone sleep at night, which is great because a lot of people with dementia will become sundowners -- they're up all night.
What were some of the behavioral tricks you used with your father?
Once we had balanced the brain chemistry, I figured out how to manage him through distraction, redirection, reminiscence, validation -- and even a little bribery! For example, he had this thing about his washing machine: He'd had it 20 years and I'd already had it fixed once, but he was afraid it was going to go out, so he would stand over it with his arms outstretched, praying for it to make it through the rinse cycle, sometimes with no clothes in it. Instead of using logic and reason, I used distraction. My dad loved the weather channel, so I'd talk about the tornado in the Midwest and isn't that near Aunt Aggie and Uncle Roy? And he would sit down by the TV and relax -- while I prayed that there was a tornado somewhere.
Do you think depression is pretty much a given for caregivers dealing with someone with Alzheimer's?
Yes, I think so. When you're getting your parents evaluated, don't forget to ask for an antidepressant for yourself, if you need it. I wish I had taken one. Instead of having the roller coaster -- the horrific highs and lows -- if you can smooth it out so it's not quite as high and low, you won't be on the floor curled up in the fetal position, as I found myself one day, crying hysterically and feeling that I was losing my mind. As I talk about in the book, there was Jacqueline who was very rational and then hysterical Jacqueline, who was just over the edge, and I couldn't stop.
Did you feel rage at your father?
Yes! When my father attacked me another time and I had to defend myself as he pounded on me, I hate to even think of what I might have been pushed to if there had been a gun in the house. The statistics on elder abuse are horrific, but if caregivers were educated about how to manage challenging elders, they wouldn't find themselves teetering on the edge of that line. There are many subtle degrees of elder abuse. When you've been spit at and hit, and the dinner you've prepared has been thrown on the floor, you may be tempted to plop the person down hard instead of gently for a momentary retaliation. But if you understand the disease and know behavioral techniques, there's much less chance of that happening. Those things escalate when caregivers are fried out of their minds.
Is just understanding the disease enough to help you control anger?
It's not a magic bullet, but it's a step. This is why I wrote Elder Rage -- because once I solved it medically, behaviorally, socially, and with the right caregiver, I could have walked into my parents' house and instantly known what to do. And I just had to tell people about that. I'm not telling you that it was perfect; I'm saying that we didn't need police intervention anymore.
What advice do you have for caregivers about taking care of themselves?
The number-one thing is: Put yourself first. My mother always said to me, "Oh, honey, we didn't want you to have to take care of us." Of course you do it because you love them, but they don't want you to lose your health to do that.
Did you go to a support group?
When people told me I should go to one, I said, "Why would I possibly want to go listen to other people's problems?" Well, going is really a godsend because of the support. You talk to your friends who are not going through it, and their eyes glaze over because they're just not there yet. They want to be supportive, but they can't. You need people who know what you're going through, to the degree you're going through it. You know, one time I said, "I can't get Dad to stop drinking Mom's Ensure Plus." And someone said, "Oh, we have the same problem." So it kind of becomes a brainstorming session: In addition to telling your story, you're coming up with solutions together.
I didn't go all the time, but it was sure nice to know there was someplace I could go where people understood. And now there are online support groups all over. You may be up at three in the morning with a sundowning parent, but it's daylight in Australia. There's always somebody else up you can commiserate with.
In your talks and radio show, what do you hear most from caregivers?
They are burned out and they don't know what they're going to do. They're an adult daughter whose siblings have dumped it on her, or they don't live nearby, or they have a business, and maybe she's the daughter that never married. And the siblings are telling her what to do and they're not appreciative -- that's one thing I hear quite often.
Also resentment: "I haven't had a vacation for four years and my brother won't help out," all that. And many of them have developed illnesses themselves, or they're on the verge of it. I always tell the organizers of the events I speak at to make sure to have Kleenex in the audience, and also when I'm signing my books, because I ask each person in line about herself, and often the person will start crying. I get up and go around the table and hug her, and I tell everybody else in line, "OK, we need hugs here."
Then once I find out the situation, I introduce the caregiver to the person at the local daycare center or another professional who will personally guide them. I stay there until the last person leaves; I don't care how long it is. I get somebody face to face with them so that they don't leave not knowing whom to call. This isn't my work; it's my mission, my passion.
Looking back, what's the main thing you wish you had known as a caregiver?
The biggest thing I wish I'd known is the importance of understanding the ten early signs of Alzheimer's disease. If I had understood the difference between normal aging and those early signs -- that my dad's lifelong negative behavior pattern was getting intermittently distorted with the onset of Alzheimer's -- I would have known not to listen to all the professionals that I came into contact with who said, "He's just getting old." I would have known how to find the right doctors who would have done extensive testing to uncover it sooner.
Alzheimer's will overwhelm you unless you're educated about it and don't just chalk up the warning signs to old age. That's what everybody does, even some of my closest friends who've read my book and been to my lectures! They're so busy with everything else, they're the "sandwich generation," they've got kids, they don't live near the parents, so when they see them, they seem fine. It gets put off and put off until there's a crisis.
Caregivers need to demand a referral to a neurologist who specializes in dementia or an MD with a specialty in geriatrics, so that everything that can be done to uncover it early. Then you can get medications to slow down the progression of the disease and keep parents in that early stage longer. I don't care if you get a week, a month, a year, a couple of years -- if they're your loved ones and you can keep them more cognitively with it and not needing full-time care as soon, it's huge. And there are so many drugs in the pipeline now, hopefully soon one of them will be able to stop the disease.