In this episode, co-hosts Steve O'Leary and Virginia Naeve share some early signs and symptoms they observed in their family members with Alzheimer's disease. Guest Bill Edwards discusses his personal experience with early-onset Alzheimer's disease in his wife, Nancy. What would like to hear about next? Email us at [email protected]
Steve O'Leary 0:06
From the University of California Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias. Welcome to Spotlight on Care. This is Steve O'Leary. I'm one of the co-hosts for this podcast along with Virginia Naeve. And we're really excited about this. Virginia, why don't you give us a little insight as to what our topic is going to be and you know, your perspective on it.
Virginia Naeve 0:42
Thanks, Steve. I'm really happy to be here today during this with you. Today's topic is early signs of dementia. And in a few minutes, we will, Steve will introduce our guest visiting with us today. But first I want to share one of the first signs that I had from my mom, that something just wasn't quite right. Mom's best friend Betty, who lived right across the street, called me one day and asked me if I'd notice anything unusual about mom. I said, “Well, no, not really.” And she said, “Well, let me tell you this. The other night was our monthly bridge game with the gang. And it was mom's turn to provide the munchies and the snacks,” as they all took turns with that responsibility. Betty said she had gone over to see if mom needed any help and noticed mom was running around the house trying to find the deck of cards. Betty knew right where they were. They'd been in mom's living room in the same drawer for years. Then Betty said, “Do you need help preparing the food Helen?” And mom was busy pouring some peanuts into a bowl. And that was the only bit of food that mom had planned for the evening, a bowl of peanuts. Betty said that had never happened before. And she thought, she was telling me that I should start to pay attention to what was happening to mom. And Betty was right. That was one of my first wake-up calls. So Steve, I want to know, was there something that you first noticed about your wife, Patty, that gave you some concern? What was that?
Steve O'Leary 2:44
Yeah, it's kind of a sad story. Patty, and I work together. We owned a company, an advertising agency together. And she was the controller and she reported to the CFO. So, we didn't have a lot of day-to-day activity, except when we got home. So on one occasion, we're having a glass of wine. And she says, “You know, I just think we need to hire more people. I don't think we have enough people to handle the workload.” And I'm going, that doesn't make a lot of sense to me, because we probably had let go in the last year five or six people. So we had fewer people working. So I said, “Well, why don't you talk to, you know, to John, the CFO and see what he has to say,” not thinking anything about it. And then I put it out of my mind. And about five months later, Patty chimes in with the same story. Now we're two or three more people down, the nature of our business was up and down. And she said the same thing, “I just don't think that we have enough people working in finance to handle the workload with HR and finance. And I think that we really need more people.” And I said, “Okay, well, why don't you speak to John?” I was trying to not get directly involved since John reported to me. And in retrospect, what was happening, she was having a lot of difficulty continuing to perform the same function she'd performed for several years. And I didn't listen to the call, her request, her plea. So that's my example. We're really pleased to have someone with us today. His name is Bill Edwards. He's a longtime friend of both Virginia’s and mine. And Bill is going to share his story of some of the signs that he saw in his relationship with his wife, Nancy. So Bill, welcome to Spotlight on Care. Why don't you give us a little of background about you and Nancy, and your journey together?
Bill Edwards 4:49
Well, thank you, Virginia, and Steve, it's very nice to be here. Nancy and I were married 47 years, got married in 1968. And we traveled the world. We lived in several countries, one of our daughters born in Indonesia, one in Alaska. Was in the oil business for a long time before going out on my own and forming my own company, which has been active here in Southern California for 20 years now. Nancy was a medical professional, I'll come back to that later. But in 1998, on our 30th wedding anniversary time, began to notice changes that were going on in Nancy, real dramatic changes. Personality. She had a very outgoing, calm, friendly, always caring personality, and that changed. She got angry easy, she was scowling more than smiling. She was difficult to deal with. She always dressed perfectly. And then she stopped dressing perfectly and didn't seem to really care much about how she looked. She also was always on time and kept to a schedule and all of a sudden stopped doing that. Well, of course, I had no idea what was going on. I didn't even, I knew what the word Alzheimer's was, but never had any exposure to it before then. So of course, I got mad, you know, because I was a perfectionist, and she needed to be doing the right things. Right? And she needed to be the old Nancy. Well, she wasn't the old Nancy. And she, she declined from there. She was a medical professional that needed to chart, and charting became impossible. Kinda like what Steve was saying with Patty, Nancy was no longer able to do her job. She couldn't chart patients. And she told me that she really was, just there weren't a lot of patients and she really wasn't very busy anymore. Well, what actually was the case was, she really wasn't seeing patients anymore. But of course, I didn't realize what was going on. And I got angry again, of course. And said, you got to straighten up and fly right here, kid! What's going on here? Really, very, you know, very pathetic for me. You know, I didn't, I really was very stupid about what was going on. There was no Alzheimer's in her family. And going back several generations. In fact, her mother passed away at 99 and a half, still driving, which she shouldn't have been, and living in her own house. And so I just figured Nancy was going to be the same way. And it went on for, got worse and worse. And she had accidents, which she never had before. I was the one that had the accidents and drove up the insurance cost. And she lost keys. I tried to get her to go to see a psychologist, you know and see what was going on. She fought that. She fought going to a doctor. Now what's really key here is that Nancy's medical practice involves dealing with Alzheimer's patients. So, in retrospect, Nancy knew exactly what was going on, and didn't want to admit it. One of the kind of funny things was that she came to me and said she really wanted to change careers. She wanted to go into the insurance selling business. I mean, this is totally separate than anything she'd ever done before. And she wanted to start selling long-term care insurance because she thought that was going to be needed. And of course, it was too late by then for us to get it for her. I've had it since then. So what happened? Well, in 2003, it was really getting so bad that she no longer worked. She sat at home. She didn't admit anything was wrong. She didn't drive anymore.She didn't do anything really, not even go to the grocery store. And of course, this was getting worse and worse. And I was at that time going annually to the UCI executive health clinic to get my annual physical. So I asked the doctor, when I went to get my physical, I said, “You know, I think there's some things wrong with my wife. I'd like to get her to get a physical.” And finally I talked her into doing that. And so I dropped her off since she didn't drive anymore. I dropped her off at the Gottschalk Center. I'm not saying that correctly, but you know what I mean, at UCI. And she went in for the physical and I got a call 30 minutes later saying, “She can't follow directions. She can't do any exercises. She can't do anything. So we've told her that the physical was finished.” Now I neglected to mention, Steve, that Nancy was a marathoner. She ran the LA marathon three times, So, being in shape was until this came along was not ever a problem. We did have a wine every once in a while, but she had a good diet. So anyway, when I went to visit the doctor, he said, “Okay, Nancy, we'll come back in a week for the results.” And then he called me and said, “I think I know what's wrong. But let me work on this a bit.” And he called me and said, “I think it's Alzheimer's disease.” Well, I mean, that was a shock to us. And we went back in the week later, went into the doctor's office, he shut the door, and he looked at Nancy, and he says, “Nancy, you're a medical professional who deals with Alzheimer's, you know exactly what's wrong, don’t you?” And so then we all cried.
Steve O'Leary 10:49
That’s a sad story to that point, Bill. Let's go back and talk about one thing you mentioned that I think might deserve a little more attention. What was your reaction? Well, actually, you were talking about the fact that, you know, in hindsight, you didn't see all these things. And, and that's because you had no information or no knowledge of it. Could you talk a little bit about the frustration you felt at that time?
Bill Edwards 11:14
Well, there was no knowledge. And this was just a change in the person I'd known for, since 1965, and who was very fastidious, took very good care of herself, got lots of awards for her dealing with patients in her medical work. And there was something wrong, but she wouldn't talk about it. And I kept saying, what's wrong? You know, what's the problem? And I didn't know, I didn't know the signs. I had no idea.
Steve O'Leary 11:48
How were you dealing with all of this, when you when you were going through this?
Bill Edwards 11:55
Extremely frustrated. I couldn't understand why she no longer could work, why she could no longer write. I knew there was something wrong, but I couldn't get her to go to the doctor. She also stopped reading. She used to read novels all the time. And she just said that she didn't have time anymore. And of course, she didn't have time because she couldn't read. And it got extremely frustrating. Our marriage really went to, with all due respect, to more of a brother-sister relationship and not liking each other. But I wasn't going to throw her out the house. I'm wasn’t going to get rid of my wife, you know, and she just, our daughters were very upset about it. And they couldn't get her to do anything, either.
Steve O'Leary 12:44
Well, Bill, what happened after you got the diagnosis? How did things change? Did that help? Or did that hurt?
Bill Edwards 12:52
Well, let me tell you how we got the diagnosis. So, the doctor is at UCI’s Executive Health Group said, “You know, downstairs we have, we have a testing center. And let me see if I can get you in to just get some tests done and see what's going on.” And so we were introduced to Dr. Malcolm Dick at that point in time. And this is around 2003. And he put Nancy through all the tests that you go through. And, of course, she couldn't do a lot of the things that she was supposed to, you know, couldn't remember, the dexterity wasn't there. Medically, she was in great shape. I mean, her blood pressure, everything was great. Which will come back later, I'll tell you what that meant. But we went in for the, for the diagnosis. And I brought my daughters into town. And we sat in the room. And she had the, you know, the brain scans and the whole thing. Okay. So Dr. Dick gets all of that out and he starts to explain it. And he says, this is a famous story that I think you in Virginia know, he said, “Nancy, why don't you come up here and look at the results and tell me what's going on because you're the medical professional and have dealt with Alzheimer's before.” And what he did there is he gave her her ego back and her sense of well-being, because he said you're the medical professional, you tell me. And of course, she went through through the test and told him exactly what was going on. So once that happened, then Nancy became a research subject at UCI. That was when we were introduced to UCI MIND. And so, Nancy was monitored and had access to the senior care doctors through most of her disease. And when she died, she donated her brain. So I like to say Nancy's wandering around somewhere being tested somewhere around the world. Nancy was, in 2008, Nancy had gotten to the point where she could not do anything. She couldn't tolerate caregivers. And so we put her into Silverado, which was total care. And she passed away seven years later in 2015. So Nancy's journey post-diagnosis was 12 years. And part of that was because she was in such great shape. Physically, she was in really good shape. That wasn't the problem.
Steve O'Leary 15:37
You know, Bill, you talked a little bit about your relationship changing. And I know, that's a hard topic to talk about. But I think that might be beneficial for some of us, you know, who were just starting to deal with it. And understanding, you know, the process that you went through. You said, you know, you had a mother, or sister-brother relationship, what happened to cause that?
Bill Edwards 16:05
She had no interest in anything else. And she barely tolerated me being around. Okay. And she had nowhere to go and had to be, you know, taken care of. So I think she finally decided she'd stay. But I will tell you that once the diagnosis was done, and we knew what was what was going on, our relationship totally changed again. It went back to where it was before, but with this disease. We became very close, again, extremely close. And I tried to make up for all the mistakes I made by taking as good care of her as I could until she passed away.
Steve O'Leary 16:51
Well, that's, you know, I think that's a true story most many of us have gone through, not seeing everything, because we didn't know what to look for. But if you had to sum up now, you know, thinking back in retrospect, if you were talking to somebody brand new, who says, you know, “things just don't seem right, what should I be looking for?” You know, what would you say to them in terms of, you know, your perspective of how you, how your consciousness might have changed now, knowing what you know?
Bill Edwards 17:22
Well, before I say that, I've got to tell you that the number one thing that we can do, all of us, is education. Is getting the word out there about what the symptoms are. You know, through podcasts like this, but education, education, education, so that when we reach a certain age (now, Nancy was only 55, so she was pretty young when this happened), we can understand what's going on. Because we had no information, okay, we didn't know anything about this. My solution was, go to the doctor, see what the doctor has to say. And she did eventually go to the doctor, she wouldn't tell me what the doctor said because she knew what was going on. I think if you see really big changes in a person, then that's probably not normal. And it may not be something they're actually controlling. It may not be where they say, “Well, I just don't want to be around you anymore,” you know, and mean it in the way you might think it is - because there's a problem in the marriage or the relationship. It may be because they have actually changed, watch for signs of change. And then be sensitive. That was what I really wasn't for many years.
Steve O'Leary 18:42
Well, that's a great piece of advice about, about being aware of change, you know, and I think that's really sound advice. Well, Bill, we both want to thank you. Virginia and I want to thank you so much for taking your time here and sharing your experience. We really appreciate it and we know the listeners will as well.
Bill Edwards 19:04
Thanks again for the opportunity to share and all the work that you're doing.
Virginia Naeve 19:08
Well, thank you, Bill for helping us get the word out there. That's our intention with this podcast. And we are sure that your information has been helpful to a lot of people who are experiencing the same things. You know, there are a lot of similarities. You with a spouse, me with a mom. Mom was in great health and she knew she was in great health. You know, she didn't require any prescription drugs. She was just, she was healthy and then this happened. So anyway, thank you again so much. Next month, I will be interviewing a guest on the difficulties with getting that initial diagnosis and will probably throw in a lot of initial signs and symptoms of the disease in the beginning as well. But you know, when you know in your heart that something isn't right with your parent or your loved one, best to get on it. So, thank you everyone for listening today and please join us next time on Spotlight on Care. Thank you.
Steve O'Leary 20:24
Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information visit mind.uci.edu.