Lou-Ellen Barkan interviews
Louise Rogers and Peter Eldridge

LOU-ELLEN BARKAN (LEB): Thank you both for donating your time and talent to benefit our work. How is it you came to be interested in Alzheimer’s disease?

LOUISE ROGERS (LR): My mother was diagnosed when I was twelve. She was a brilliant concert pianist, who studied at the Fontainebleau in Paris, where she won the first prize in the piano competition. She received a full scholarship to the graduate program at Juilliard. Those who knew her musically were amazed by her natural aptitudes, phenomenal ear, musically retentive mind and her ability to learn quickly and accurately.

When she began having difficulties, probably as early as 1972, we couldn't believe it. Yet the difficulties proved real and she was diagnosed with Alzheimer's disease in 1976. She retired from teaching at the University of New Hampshire and within a few years all of the qualities that we had admired and cherished, the intellectual and the musical and finally, the personal, ceased to be. She died at the Colonial Poplin Nursing Home on December 28th after suffering a stroke on December 25th.

Needless to say, when she became ill, life changed for our family. We became home care attendants and our social life changed drastically, but we hung together, my dad, my brother and me. In the beginning, life was a disaster with dishes piling up, the house a mess but soon my dad became chief cook and bottle washer. Truth be told, he turned out to be a better cook that my mother!

For many years I wanted to do something, to get involved -- and to use my musical talent to help. The interesting thing is that I didn't know that so many people were in the same boat. And in walks Peter – and I learned that his mom had been diagnosed. We started talking and that's how this came about.

LEB: Peter, how old was your mom when she was diagnosed?

Peter Eldridge (PE): Just two years ago. She is 80 this year. I'm the lucky one here because I had her for a long time. But at the same time, the disease hit her very hard and very quickly. In fact, some of her doctors said they had never seen someone get hit quite so hard and fast by Alzheimer’s as my mom.

LEB: We know that Alzheimer's disease hits everyone differently – even if they're the same age. Half of everyone over 85 has Alzheimer’s disease and 10% of those who have are 60 or under. The combined effect of the aging “baby boomers” and the growing number of people who are being diagnosed at a younger age is very concerning. Louise, how did you manage when you were so young yourself?

LR: I don't really know. Our family had to pull together. But at the same time, this wasn't some-thing that we all sat down and talked about in detail. It was more like, “Well who's going to stay home with mom tonight? Is your homework done? Okay, you're on.”

LEB: Was she placed in a residential care facility at some point?

LR: After I graduated from college, we could no longer care for her at home. I lived at home while I went to UNH to help care for her but eventually it just became too hard. It was necessary. The time was right.

LEB: Peter, given how quickly your mom progressed, when was she placed into residential care?

PE: She is in a facility in Connecticut, very close to my father and sister, who are there every day to deal with the day-to-day issues. I get up there as often as I can. I have a brother who lives in Ohio and comes in often as well. So we're all involved, but my father and sister certainly have the majority of the responsibilities. She is in a nursing home because the situation was beyond what my father could handle. But naturally there are all those guilt feelings that you’re not doing absolutely all you can do for her. All those terrible guilt feelings.

LEB: Normal feelings.

PE: She needs 24 hours of care and I sincerely think she’s better off with people who really understand her situation. She’s in a great facility. We checked out different options and this particular facility had personable and involved staff. I'm always impressed every time I'm up there because these people are so cool and their intentions are so good. Especially after all the horror stories you hear about things like that. I’m comforted to know that she's in good hands.

LEB: It is so encouraging to hear a good nursing home story. There are a lot of them, but we often only hear the bad news. What about your fathers? Were there support groups available for them in your area?

LR: When my mom was diagnosed in 1976 nobody was talking about Alzheimer’s disease. We didn't know about support groups. We had no idea what to do. If there were support groups, we didn’t know about them.

LEB: What about in the community? In churches or synagogues or local community centers?

LR: It was just the family. We grew up a in a small college town, where the university is the town. In the summer or during vacations, when the university is closed, it’s a ghost town. My dad had his work - he is a composer, professor. My parents had worked together at the University of New Hampshire – both music professors. His colleagues knew my mother and I think everyone was very sad for us but nobody knew how to help.

LEB: Did he feel that he needed to hide the fact that your mother was ill?

LR: No, not really, but after a while we didn't take her out too much. In such a small town, it’s hard to hide but it felt very strange for me as a seventh grader to be out to dinner and for my friends to see me feeding my mother. She looked as if she was in perfect health.

LEB: That is one of things that has changed. After Reagan died in 2004, the disease received a lot of publicity. You could see how much easier it was for people to talk about Alzheimer’s by watching media coverage. Prior to Reagan's death, there were very few stories and most were in the back of the paper. Today, people are much more likely to talk about it. Peter, did your mom have professional home care before she went to residential care?

PE: No. We were worried about her heart and other physical problems. So she moved from intensive medical care to a nursing home. And it just happened so fast. She is in stage six already and it's only been two years. She still knows who we are in her own silent special way, so that gives me at least a little comfort.

LEB: Very hard on the family. Very hard on you.

PE: For me to see how exhausted my father and sister are – that is very difficult. My father's a very gregarious guy and he seems so exhausted emotionally and at a loss for what to do. That's been hard. But, you know, at the same time, you try to look at the better side of things. He has become my hero for the first time after all these years. He has really stepped up to the plate in the middle of a very difficult situation and is just incredible with my mother. I marvel at him and his outlook on life.

LEB: It is really a nice story, because men in that generation were not trained to be caregivers or expected to be domestic or nurturing.

PE: I think he's as surprised as anyone that it didn’t turn out the other way around. Dad had a bit of a health scare probably twenty years ago and they still don't know what he had, possibly a series of strokes or encephalitis or just a strange sort of intense flu. I remember the weekend I walked into our kitchen and my father was sitting on the floor of the kitchen reaching at the air. When we took him to the hospital, his blood pressure was off the charts. For three days they expected the worst and then, suddenly, he recovered – and without repercussions. And now it’s years later and he’s this big bull of a guy and in great mental shape. Now he’s enrolled in clinical trials himself. The doctors have noted that while his wife has dementia, he has about the best brain they’ve seen in 10 years.

LEB: Helping the researchers is so important for all of us. I am also participating in clinical trials and I hope others will do the same. While not everyone can afford to donate, or give time to volunteer, with a very small investment of time, and no investment of money, many healthy people can be in a control group of a clinic study.

PE: Like giving blood.

LEB: Exactly. The first thing I learned is that you can join a trial that has no invasive procedures. There are some straightforward physical exams and cognitive tests. It is very easy and an important, easy way to help science move forward. I want the rapid development of drugs for prevention, treat-ment and a cure. Not only professionally, but personally. We have the early onset form of the disease in our family too.

I am so impressed that you are willing to talk about this when so many families experience fear and shame. Did you have any fears or concerns about discussing it?

PE: It never even occurred to me to think that this isn't a good idea. We now know how incredibly prevalent this disease is. This is going to affect all of us eventually if no cure is found in the near future.

LR: These days a lot of my friends’ parents are being diagnosed. It's a relief to be able to talk about it now with other people because for a long time I couldn’t discuss it. When my mother was ill, my brother and I were really embarrassed. We only had a few friends that we invited over. Our social lives changed dramatically. My mother was also very, very vocal. Every waking moment she was making noises - usually very loud. Once at recess, a friend told me that my mom was so “funny because she would not admit that she knew you.” We used to leave the phone off the hook, so that she couldn't answer the phone. We didn't know how to explain it and nobody could really understand.

LEB: We were still at the stage where we used terms like “senile dementia” for the elderly.

LR: Right. And my mom wasn’t old.

LEB: Your stories are very interesting because they are so different. Your mothers were affected at different ages, but as time has passed, society is dealing with Alzheimer’s disease very differently, and now we hear about it all the time.

PE: I've toured with Paquito D’Rivera, we've been to Asia and Europe together, but I was surprised when I asked him to join us for this concert and he said he would be there in a second because his father died of Alzheimer’s.

LEB: So many more of us are going to be caregivers too.

LR: In our family, we shared the responsibilities. My dad was primary. I was second, because I was the girl and able to bathe my mother.

LEB: Once I had taken over for my mother when she was ill. The professional caregiver had to go away for the weekend and we couldn’t get a replacement until the next day. I remembered the night schedule included his bath. I experienced real panic. I couldn’t do it and I wished my brother was there. I had guilt about that for years. It was physically and emotionally impossible. Sometimes it is the physical changes and the responsibilities that hit the hardest.

PE: When I see my mother, in some childish way, I still expect her to talk, to say hello, that she will snap out of it. I try to remember her as a whole person. That becomes more difficult as the months pass, but so necessary. So I look at old pictures and videos. I even have a message on my answering machine following a Mother’s Day visit with her about three years ago. My mom was watching Fox News and I asked her to give me a Mother's Day gift and turn it off. When I got home there was a message on my answering machine, telling me that there was a women’s basketball game on and how excited she was to watch it. I don't erase that message because it was just like her, and it gives me a way to remember that part of her.

LEB: These stories keep our memories alive. That’s why when you lose somebody early, it's very hard. My son-in-law, Chris, was in college when his dad was diagnosed. They had a great relationship and Chris has great stories. When we met his family and friends, they talked about all the fun things that Chris and his dad used to do together. All that ended too early. His Dad was 54 when he died.

LR: My mother's parents saved the letters that she wrote from college. So I have them to read now. I can hear her voice. I read those over and over when I was younger. Some of them I practically memorized, and even though she couldn’t tell me about her college experience herself, I felt like I knew a lot about her. I am so glad I had those letters.

LEB: What advice would you give others?

LR: If you suspect that one of your parents has Alzheimer’s, have the other parent talk to the local Alzheimer's Association chapter.

LEB: Good advice. People need an accurate assessment by an expert in the field. The Alzheimer’s Association ensures they are referred correctly. We work with both the person with dementia and, equally important, the caregivers. So many caregivers are exhausted; they need sound advice and counsel. They also need reassurance that they can take a day off.

PE: If my father is not there every day he feels horrible. One of his friends told him that it was okay to take a day off, that it would be best for both he and my mother. I think that took a big load off his mind and heart.

LEB: That’s the kind of advice that people can only get from a support group or their own informal support networks.

PE: I mean we are of the generation that Alzheimer’s disease is going to become more and more of a major issue. And I think it’s just a matter of time before people are going to be going to seek out the Alzheimer’s Association for help. That’s what this concert's about. I'm so glad we're doing this with you, because it’s a way for people all over the east coast to know about the Alzheimer’s Association and your programs.

Our concert benefits your Safe Return® program. Since government cut the money for this program, we want to help make sure people can get the protection of Safe Return. Wandering was an issue for my mom. She got lost a couple of times and I want to help so it doesn’t happen to others.

LR: Once, my brother found my mother wandering downtown. He was with a friend and thought I was home watching her. But she had left before I got home and my brother had to walk her home – two miles in the snow. At that point we knew we needed to get a home care attendant.

LEB: Safe Return saves lives, but finding people quickly in the winter is even more important. You know there are a lot of Good Samaritans out there and if they find someone wandering, a Safe Return bracelet tells them that the person is not a vagrant, an alcoholic or someone who's on drugs. The bracelet identifies the wanderer as someone who is cared for.

LR: Is there a specific time that is right to put the bracelet on?

LEB: As soon as anybody shows signs of memory loss – of course, following a proper evaluation. You should never wait until they wander, because every incident is life threatening.

LR: We had one very scary experience. She had just been diagnosed. I must have been in seventh grade. My mother was picking somebody up at Logan Airport and she couldn’t remember how to get home to New Hampshire. I remember pulling over the side of the road and calling my dad from a pay phone. “Okay … Route 95 … south … north … I’ll tell her … I’ll tell her.”

LEB: We advise people not to guess when a family member might wander. It is safer to assume that they will wander and get the Safe Return identification products immediately after a diagnosis. People with dementia wander and they don’t give you warning. Typically it happens at the worst possible time and it’s always dangerous – not only for the person with dementia, but, particularly if they are still driving, it’s dangerous for everyone in the community.

In NYC, we have a dedicated NYPD detective. If a missing person is reported, our Safe Return office sends an alert to many institutions to help find the person quickly and safely for the sake of the individual, the family and the community. Alzheimer’s is not just a personal issue; it's a community issue. Which is why I agree that as more people are diagnosed and the public’s consciousness is raised, it's going to become a bigger issue.

PE: There was a time when people made jokes about the disease. Today, it’s taken much more seriously.

LR: How is everyone going to afford health care? When my grandparents died, they had arranged that money from their estate was to go for my mother’s care. We used the income from this trust to take care of her. Otherwise, she would have been in a state run facility.

LEB: Even when families have saved all their resources their whole lives, they can’t afford this disease. The cost to live in a nursing home or to provide similar care at home can be as high as $120,000 a year. Government is having its own problems, so we are all going to have to take more responsibility for our own care. For example, younger generations will need to invest earlier in long-term care insurance. When you buy it when you're young, it's much cheaper. I am always

shocked when I learn how few people have long-term care insurance. People wait too long. They don’t want to deal with the issue and that is a mistake.

Of course, government must play a role and we need to raise our voices and advocate for better public policy and resources. We need more residential care and more home care workers. Currently, Medicaid discriminates against people with Alzheimer's disease because the system pays nursing home owners more for treatments. With dementia care, you have fewer treatments and the home doesn’t get the same level of reimbursement. We have families that are turned away from homes for this reason. Alzheimer’s care is considered custodial care

The growth of Alzheimer’s disease is a crisis in many ways, but one of the most difficult is this “Catch 22” – I need resources to take care of my mom, but if I stay home I don’t work. If I don’t work, I don’t pay taxes, I am more likely to need public assistance. If more people need public assistance, more public money is needed. No one is well served.

The current system is not designed to deal with this growing crisis. There are some wars we should be prepared for and the war against Alzheimer's disease should not be a surprise. We know it’s coming, and we need to prepare now or we will pay the price later. Right now this disease is costing us $164 billion annually. Imagine the cost when one out of every five New Yorkers either has the disease or is taking care of someone who does. We don’t have the answer now, but we are going to work hard to try to figure it out.

PE: With Alzheimer’s disease, you end up feeling helpless so much of the time. Doing this concert is a way of showing my gratitude for my mother and fighting that helplessness.

LEB: You can fight, you are fighting and you are setting an example for others. Thank you for all of these wonderful gifts to our work.

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