Behind Closed Doors: Elder Rage (Part 3 of 3) -- Full-Length Expert's Interview

Ivanhoe Broadcast News Transcript with
Jacqueline Marcell, Author of "Elder Rage"
TOPIC: Behind Closed Doors: Elder Rage (Part 3 of 3)

What happened in your life that prompted you to write "Elder Rage?"

Marcell: I was a television executive for 20 years when I had to go take care of my parents. I was so amazed what I went through. I was begging and pleading for people to help me and I wasn’t directed properly. A whole year I went through what I shouldn’t have had to go through if I only knew then what I know now. After this experience, I said to myself I’ve got to write a book! I’ve got to help other people not go through this heartache and horror that I went through. So, I sat down and I wrote "Elder Rage," and now I travel around the country and lecture and have my own radio show called "Coping with Caregiving," where I try to help other people not go through the heartache I did.

How often does your radio show air?

Marcell: It airs every Saturday on the Internet at http://www.wsRadio.com/CopingWithCaregiving, but you can find it on my Web site "Elder Rage." The interviews are archived for 24/7 listen-on-demand, so there are over 300 interviews that I’ve done that are archived on there.

At what point did you realize there was something wrong with your dad?

Marcell: I was ignoring the early warning signs. I didn’t know when I walked into the house and saw everything in a disaster, that that was a warning sign. I didn’t know when my mom asked me the same question over and over and my dad told me a story that he had just told me an hour ago, that that was a warning sign. Buzzers should have gone off. I should have realized that this was the beginning of dementia in my parents. I just thought it was a normal part of aging. There were warning signs like misplacing things in odd places, not being able to find the right word over and over, stumbling on it, completing sentences for them, or getting lost in the town that they lived in 37 years. My heart broke and I cried and thought oh my gosh, he’s getting older. This must be what happens. However, it’s not a normal part of aging. I tell everyone, when your loved one does something that strikes you as illogical or irrational, it is! You don’t need to second-guess yourself. What you need to do is see a doctor who can diagnose it at the earliest stage.

What is dementia?

Marcell: Dementia is an umbrella term. Alzheimer’s is just one of many types. There’s frontal lobe dementia, vascular dementia, or even Pick’s disease. We hear about Alzheimer’s so much because it makes up for 50 or 60 percent of all the dementias, so if someone is having some cognitive malfunctioning, the likelihood is it may be Alzheimer’s. But, you need the right doctor who can diagnose that. The way to find that is by calling the Alzheimer’s Association or your area agency on aging or the Department of Aging. There are lots of resources where you can find the right doctor because I took my mom and dad to their regular doctor and she couldn’t find anything wrong with them. I was stunned. I thought, well, she’s the doctor. Shouldn’t she know everything? That was my biggest problem. I thought a doctor should know everything. Dementia is very specialized. So, once you get to the right doctor who does the appropriate tests, the neurological tests, the blood tests, the memory tests, the history, maybe even a PET scan, and really spends more than 15 minutes with them and really uncovers it, then there’s something we can do about it. There are medications now in the last few years that can help slow the dementia down and keep the person in the early stage. Most people don’t reach out for help for about four years and think it’s a little confusion, a little memory loss, a little irritability, or a little loss of initiative.

What is used to treat dementia?

Marcell: There are three commonly used medications now. One is called Aricept, one is called Exelon, and one is called Reminyl. In most people, these medications can keep the patient in the early stage longer. Statistically, families and many doctors will ignore the early warning signs for about four years until there’s a crisis. I’m trying to wake everybody up the first time something happens. One day you might experience some dementia with your mom, but the next day, she might be right there. Then, the tendency is to say she’s fine. I don’t want to acknowledge what happened yesterday. I don’t want to think about the pink elephant in the living room because she’s fine now. The tendency is to be in denial that there’s anything wrong with our loved ones. We don’t want to think our once competent loved ones are now declining in their cognitive ability. The next time you see dementia might be a few months later. Maybe medical science will come up with a better solution for us and maybe even a cure. People have been diagnosed with Alzheimer’s disease and all they needed was a daily B12 shot. A B12 deficiency can cause dementia-like symptoms. A folate deficiency, a thyroid deficiency, or depression alone can cause dementia-like symptoms. Reversible dementias have to be ruled out. Some medications you may be taking may be causing some dementia-like symptoms. One out of every 10 persons by the age of 65 will have some type of dementia. It goes up every year, so that by the age of 85, it’s one out of two. Nearly 50 percent aren’t thinking clearly. The other 50 percent are thinking just fine, so it’s not a normal part of aging. We’ve got to do the things we know now to help for prevention. Exercise is good and vitamin E therapy. Do crossword puzzles. Learn a new language. Learn a new instrument. Strengthen that part of the brain that makes you learn something new. They believe that’s very helpful for helping prevent dementia and also for someone who’s been diagnosed with dementia.

Tell me how the aggressive behavior manifested itself with your father.

Marcell: I had two parents with Alzheimer’s disease, but both very different. Mom was sweet and lovely before her Alzheimer’s and sweeter and lovelier after. The rage didn’t affect her. My dad always had a bad temper. He was 90 percent wonderful when I was growing up, but 10 percent of a raging temper. Well, he was addicted and trapped in that bad behavior of a lifetime. When he got angry, he screamed and yelled and pounded his fists, so why did I think that would be different at 85? Now, he’s screaming and yelling and pounding his fists over things that are illogical and irrational. At times, I just thought this is just more of him, which it was, but I should have understood that it also was the beginning of dementia in him. Five to 20 percent of people with Alzheimer’s disease will become aggressive, and 40 to 60 percent will become agitated. But, not everybody is the same. They say if you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s. Everybody can be different. So, I experienced the worst situation of having someone who was very difficult. I went through 40 caregivers. He’d throw them out of the house. He’d be so nasty, nobody would stay and put up with him. My mother was just a sweetheart and everybody loved to take care of her, but I couldn’t get anybody to stay to take care of dad. So, it was really a challenge.

Were you able to fix the situation?

Marcell: Yes, I solved it. I found the right doctor and the right combination of medications to slow the dementia down. The antidepressant worked in both parents to help their moods. Many people are helped with antidepressants that have dementia, and medication for the aggression in my dad. I don’t mean zoning him out, but balancing the brain chemistry properly. We were able to do some behavioral things like distraction, redirection, reminiscing about the old days, you know, validating his frustrated feelings. Once the brain chemistry was properly managed for the dementia, the depression, and the aggression, I was able to do some behavioral techniques with him to manage the challenging behaviors. Then, I got my parents into adult day care, which was the answer, because we had something to do, some place to go, people to see, activities, and interaction with children. They had pets that they got to play with. My mom got to chop the salad. They had field trips. It was marvelous activity they had all day long.

How was your father’s behavior affecting your mom and her health?

Marcell: My mother had had a heart attack and my father had taken care of her for 11 years, refusing all help, but calling me every day. I would fly there and get caregivers in place. It wouldn’t be three days and he’d throw them out. I already went through 11 years of this when I finally had to step in because my mom almost passed from his inability to care for her. That’s when I said, that’s it, we have got to get you to accept help. I thought he would eventually do that, but he fought me tooth and nail the whole way until I figured out how to manage it.

What did you find, what was the environment?

Marcell: I walked into this house and was astounded by what I saw, just a disaster. That should have been my first clue. They couldn’t take care of themselves anymore. I got a seven-person cleaning crew to come in and clean the whole thing. What I should have done is call adult protective services and had them come in and be the bad guy to tell dad, you have to have a caregiver here to help you with your wife.

When was the first time you started to notice the aggression in your dad?

Marcell: I’ll tell you, the first day I got there, I had gone to the store and bought some groceries and I had thrown away two little hand towels. They were shredding. They were so crusted with food, they wouldn’t have even made it through the washing machine, so I bought him two new ones. He was so furious with me for throwing these hand towels away. He took them out of the trash, threw them in my face, screaming at me for throwing away these hand towels. With the knowledge I have now, I’d say hmmm, this seems illogical, this seems irrational, even for him, this is over the top and I wouldn’t have cried and tried to use logic and reason. I would have known that I needed to get him in for evaluation for the beginning of dementia. And, I would have gotten help a year sooner.

Was he aware of your concerns?

Marcell: Oh yes, but very strong willed and very obstinate. He did not want anybody in that house, and he adored me. I was the love of his life, and he threw me out of the house, called me every nasty name, and I would cry. Now I wouldn’t cry, I would understand. It’s so sad.

You refer to him as Jeckyll and Hyde, right?

Marcell: In the book, I refer to him as Jeckyll and Hyde because he could switch on a dime. I would take him to the doctor and he’d be totally normal. I didn’t understand that dementia doesn’t mean stupid. He was socially adjusted not to show that bad side outside anyone of the family, so he knew. I was taking him to doctors who were saying what day is it? What time is it? How is the governor? He knew that. They were checking for somebody who was much farther into the dementia. They weren’t checking for the beginning, early signs of it, which comes and goes. So, it wasn’t all dementia. He was mad. He was furious with me, but I couldn’t reason with him at times because of the dementia.

What was the most frustrating part?

Marcell: The most frustrating part was that I took him to professionals who didn’t direct me properly and I thought I was going to lose my mind before I solved this. I mean, a whole year I shouldn’t have had to spend the way I did. Now, if I got a call and walked into the house and experienced what I experienced, I would know immediately what to do. I would know the right doctors, the right medications, and the right behavioral techniques. I would know to get them into adult day care no matter how much he protested. He eventually loved it. It just took a couple of weeks. I would know how to get the car keys away from him without him hating me. Everything I learned the hard way, and that’s why I wrote ‘Elder Rage,’ so that no one else would have to reinvent the wheel. I really sweated for a year. Not one professional said to me gee, this could be the beginning of dementia in your dad. I didn’t know what dementia was I think the biggest misperception out there is that someone with dementia, we immediately visualize nursing home time. We don’t realize how long it takes to get there. It’s a long goodbye. It’s a very long progression. Stage I is two to four years. Stage II is two to ten years, and that requires full-time care. Stage III, which is nursing home time, is one to three years. So, I didn’t get it. I thought he couldn’t have any kind of dementia. He knows what he’s doing. He’s just being mean and nasty.

When and where did they tell you it was Alzheimer’s and what was your reaction?

Marcell: A year later, a friend casually mentioned to me to call the Alzheimer’s Association. Once I got to the Alzheimer’s Association and saw the 10 early warning signs, I was like yeah, yeah, yeah, he’s doing that, he’s doing that, he’s doing that. Not every day. Intermittently. It comes and goes in the beginning. Once I got the referral to a dementia specialist who really spent the time with both my parents and evaluated them very closely, I got the right diagnosis. I couldn’t believe what I had been put through all this time. We were able to get the right combination of medications because my father had attacked me. He had never laid a hand on me in my whole life, but all of a sudden, he’s got his hands around my throat for adding HBO to his television. I called 911 for the first time in my life and the police took him to the psychiatric hospital for violence. They released him because he was so normal when he got there. He was in four times for violence. They released him every time because they couldn’t find anything wrong with him. The head of the psychiatric hospital told me he was normal for a man his age. I got medication that zoned him out by these doctors. I didn’t get the right combination until I got to the right geriatric dementia specialist.

How did you get him to go to the adult day care?

Marcell: The first day of adult day care, he hated it. He threw his food on the floor, screaming and yelling, and was a nightmare. We came to pick him up four hours later and the social workers were pulling their hair out. However, they said my mother was lovely. We’d love to have her anytime, but your dad can’t come back. It took a few weeks and gradually we had to tell him mom’s going, you can stay home by yourself, but she’s going. Well that was a fate worse than death, so he finally went, and then he started to like it. It would be four o’clock in the morning and he was asking if it was time to go to day care?

He didn’t mind the change?

Marcell: Nobody likes change. It’s very scary for a senior, particularly someone with dementia. You have to do everything gradually, and I didn’t know that. So, we should have gradually taken them two or three times, introduced them for maybe an hour or a little longer.

That’s a good tip. How did you keep yourself going?

Marcell: You know, when I started into it, I bought all the books on caregiving. I read them all and they made it sound so easy if you had a cooperative elder. I thought to myself, where is Chicken Gumbo for the Raging Aging Soul? I didn’t know I needed to be in a support group. If I had gotten into a support group, solutions would have started presenting themselves because I would have met other people going through it. I would have known about online support groups that are so prevalent now. I would have known not to even talk to my friends who were not going through it because their eyes would glaze over and roll back in their head because they’re not in it yet. It’s just not something people want to deal with unless they’re in it. Once I saw that, I felt I had to write a book that’s going to make people laugh and give them hope and solutions because that’s what I needed when I was going through it. If I had my own book when I was going through it, it would have saved me. So, I heard it was a 63 percent higher death rate than other people your own age if you are a caregiver, particularly of a challenging person. I thought that was a tremendously high statistic. A year into this, I thought that statistic is too low because I’m going to jump off a bridge here any minute. I cried every day for over a year. I thought I was going to go before my parents. However, my father’s determination and stubbornness I inherited. I learned from him and was just as determined to solve this as he was. That determination and persistence I inherited and learned from my father were the traits that I needed to help him, and I did. Keeping my parents together with 24-hour care for five years is the biggest accomplishment of my life. I was able to not separate them and put them in a nursing home. I’m most proud of being able to keep my parents together with the right combination of medications, the right caregivers, and not separate them after 60 years of marriage. That’s the biggest accomplishment of my life.

How have your thoughts about behavior changed?

Marcell: Now that I understand what was happening to him, all the nasty names that I was called don’t even bother me. I understand now, and that is why I wrote ‘Elder Rage.’

Do you have anything else you want to add?

Marcell: I think my biggest message is to look for early signs and diagnosis and get treatment. When your loved one does something that strikes you as illogical or irrational, it is. Don’t second guess yourself and think it’s a normal part of aging. There are solutions, there are medications, and there are treatments.

This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week. To subscribe, go to: http://www.ivanhoe.com/newsalert/.

END OF INTERVIEW

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