In this episode, co-hosts Steve O'Leary and Virginia Naeve discuss their experience getting an initial diagnosis of Alzheimer's disease for their loved ones. Guest Lisa Up de Graff shares personal challenges and successes in navigating diagnosis and care for her mother, who was diagnosed with Alzheimer's disease five years ago. 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.
Virginia Naeve 0:23
Hello, and welcome to Spotlight on Care. I'm Virginia Naeve and I'm here with my co-host, Steve O'Leary. Today, our topic regarding Alzheimer's caregiving, will touch on issues relating to getting a diagnosis. And our guest will tell you what that was like for her and her mom. Before I introduce our guest, Steve, can you tell us what was going on in your head when you first decided to make the call to a doctor or a specialist regarding your wife, Patty?
Steve O'Leary 0:58
Yeah, I think we were both scared. Certainly Patty was scared that, you know, she knew she had some memory issues. And she was afraid that the diagnosis might show something bad. And it did. But on the other hand, you know, without a doubt, getting the diagnosis was the best thing that we possibly could do. It gave Patty from the very beginning, confidence in knowing exactly what was wrong with her. It gave her confidence in talking to friends and neighbors about her disease. When somebody would say how is she doing, she was very up-front, I have Alzheimer’s. It also helped her as the disease progressed. You know, when she was worrying about something, I would remind her that she has Alzheimer's. Of course, that was momentary, but at least it gave her confidence, she would go, Oh, yeah, I know. And so I think from the very beginning, all the way through her disease, knowing that she had Alzheimer's was definitely an asset for her, and certainly was an asset for me as well.
Virginia Naeve 2:02
I'm so impressed with how you did that. Um, you know, everybody has a different experience. And I think that your experience was pretty positive. And you really had a grip on what was going on. I didn't, I really didn't. My experience with getting a diagnosis was really interesting to say the least. But let me tell you how that went. Mom's general practitioner, was not helpful with my questions about what was happening to mom. So after six months of wrestling around with this, I thought I need a specialist of some sort. So I picked a neurologist, not knowing a thing about him, which was my first mistake. So I called their office and they mailed to me a six to seven page questionnaire to fill out about mom symptoms and behaviors. So I did, and then telling mom, we were going to see a doctor when she felt fine, was really awkward. But she agreed. And I said we'd have a really nice lunch after the appointment. So I got to the neurologist’s office, we were ushered back to a lovely room with a large mahogany desk. The doctor came in, introduced himself and spread my questionnaire on the top of his desk. He read much of it, kind of going over it with his finger. And he looked up at me and he said, I see here that you don't think your mother can balance your checkbook any longer. I felt my face getting red and hot. I looked over at mom, and she had her arms crossed over her chest. And she said, Well, I bet I can balance it better than you can. So much for seeing a professional. I was furious. I was embarrassed. And I felt horrible for my mom. He looked at me and he asked me to go wait in the waiting room. So I did. And he gave mom a small written test. And then I was called back to his office. And he said to me that it appeared that mom was in the beginning stages of Alzheimer's disease. He said it right in front of her. He sent us home with a seven-day sample pack of Aricept and an order for an MRI brain scan. We got into the elevator to go down to the parking lot and it was torture for me. I thought I had done irreparable damage to my mother daughter relationship. And then mom looks at me and she said, So where are we going for lunch? I was nauseous. But mom had absolutely no recollection of what had happened in that office. None. So that was my experience getting official, an official diagnosis of Alzheimer's for my mom. Needless to say, we did not go back to that doctor. And my takeaway from that experience was that I should have gotten a referral from someone to find a doctor who was at least compassionate.
Steve O'Leary 5:38
Well, that's a great story, Virginia. I think that that's probably more common than my story. And I think it's true. You know, some neurologists we know, even talk about the fact that they think that, you know, a hospital diagnosis or a university diagnosis is a much more professional way to go, just to clarify all the issues. And I was fortunate enough to start at UCLA. And then I moved down to UCI, and I always felt like I was dealing with somebody who had that kind of compassion that you're talking about.
Virginia Naeve 6:15
Yeah, you did it the right way. Well, it's now time to introduce our guest for this podcast. Her name is Lisa Up de Graff. She lives in Los Angeles and her mom was diagnosed with Alzheimer's about five years ago. Welcome, Lisa, we are very glad that you are here.
Lisa Up de Graff 6:37
Thank you so much for allowing me to be part of this really important work you're doing, Virginia.
Virginia Naeve 6:42
Well, thank you. We're hoping to help a lot of people. Now, Lisa, tell us about your mom. What was she like before getting a diagnosis of Alzheimer's?
Lisa Up de Graff 6:53
Well, my mom was really dynamic. And she went to Stanford. And in those days in the 50s, women weren't really encouraged to have big careers outside the home. She found herself in volunteer work. And she started many different things, including the LA Opera associates, she was the first woman president, she started the Anne Banning Auxiliary at the Assistance League. She was quite the mover and shaker and dynamic and funny and bright. And then raised us and my sister and myself, and then sort of had a midlife crisis - decided that she wanted to start to sing. So her friends were lovely. And once a year, started probably in her 70s. She would put together a cabaret act, and she would create all the stage patter and movement and songs. And she'd rent out venues in Hollywood and her friends would come and see her. And I firmly believe that this is one of the reasons why she staved off her ultimate Alzheimer’s diagnosis as long as she did because she was using her brain. And she was using music. And so it was, she was really very vibrant, very vibrant until the diagnosis about five years ago.
Virginia Naeve 8:15
Wow, she sounds like an unbelievably talented person.
Lisa Up de Graff 8:20
She was, she was. And that's the saddest part is you, and I know that this mirrors of what a lot of people say about their loved ones who you see the steady decline, is you see that part of them slowly subside and it’s heartbreaking.
Virginia Naeve 8:38
What were the first signs that you noticed that made you think you better move forward with a diagnosis?
Lisa Up de Graff 8:47
Well, my mom, never a great driver, never a great driver. She was having a series of accidents, culminating with a really bad one. And so I took her to a new doctor I found who was affiliated with UCLA, it's an internist. And because I really the motivation was to stop her from driving. I didn't really think about Alzheimer’s per se. She wasn't repeating stories or forgetting things in a way that I noticed measurably, it was more the accidents. And she's a very proud and a very smart woman. She could cover herself if she ever did make any verbal gaffes. So we went to see this new doctor and in the family history, it came out that her, my mom's younger brother four years younger was diagnosed with Alzheimer's at age 70. My mom at this point was what 80, 81, something like that, 82? And so that coupled with the fact that their father, my grandfather, who was quite brilliant had horrific dementia, which now knowing more about Alzheimer’s clearly was what's Alzheimer’s diagnosis. The doctor who was wonderful and her own stepmother had early-onset Alzheimer's said, you know what, I think we should have her tested for Alzheimer's. And that began our journey. And was I surprised when the ultimate diagnosis happened? No, I wasn't because of the family history. But she wasn't forgetting things. It wasn't what you normally would hear. It was really wanting to keep her from driving and endangering other people. That was my motivation. But God, you know, thank God.
Virginia Naeve 10:40
Didn't you mention something about her seeing a crazy thing from space land on her car?
Lisa Up de Graff 10:51
Yeah, she called me, yeah…You just have to laugh, Virginia.
Virginia Naeve 10:55
What else can you do?
Lisa Up de Graff 10:57
What else can you do. Yeah, she called me. It was Memorial Day weekend, we were all supposed to meet at the beach as a family. And she called me and she said, Lisa, you won't believe what just happened. I think this this triangular cone object fell from the sky and hit my car. And I thought, what! And she said, maybe it was a UFO. And I thought, Okay, well, and I didn't want to become too alarmed because I want her to get home. I made sure she was safe. And I, she got home, but she had had a terrible accident. But she, I think somehow her brain, she had some sort of brain blip or something. So that with, she wasn't cognizant that she'd had this horrible accident. She just thought something, some UFO has dropped from the sky and hit her hood. And I thought that was odd. And of course, the doctor agreed that that was odd. And definitely we should, it couldn't hurt to have the run the battery of tests that they do at UCLA.
Virginia Naeve 12:04
What type of doctor did you visit? And how did you know to visit a certain type of doctor?
Lisa Up de Graff 12:11
Well, we were very lucky because this new internist was affiliated with UCLA, she sent us straight to the Alzheimer’s Department of Neurology, so we initially she, my mom went through a battery of tests, CT scans, MRIs, saw a psychiatrist, a geriatric psychiatrist, who evaluated her, and then a neurologist, who went again, went through the tests with her that they do for Alzheimer’s. So we, they have an extraordinary program at UCLA, as I'm sure they do at UCI. And so they were able to, we just sort of plugged mom in to their, to their process, and we got the diagnosis. And they they look at the individual from such a holistic way. They there's so much there's so many different tests and so many different ways of looking at memory and looking at patterns of behavior that they were able to do a very conclusive diagnosis. So we were very lucky. We were just very blessed all the way along.
Virginia Naeve 13:24
That's changed a lot since I had to have mom diagnosed in 2005. They've come a really long way with a battery of testing that they can do to figure out actually if it's something other than dementia, there are certain things that can cause strange behavior and memory loss. But did they prescribe any drugs for your mom?
Lisa Up de Graff 13:49
Well, of course they put us off put mom on the regimen of Namenda and Aricept, basically as a cocktail to hopefully prevent or stave off any more erosion. But, but they didn't know and they were very honest. They said this may do absolutely nothing. And my mother who was very, very holistically oriented. I grew up in a family where the, she went to naturopaths and acupuncturists and healers, and she believed only in doing things in a very natural, holistic way. She refused to take the medicine. And I at that point, my sister and I were very proactive and immediately we went to a lawyer, I got power of attorney so that, because we were we vowed to be one step ahead of mom's deterioration. So I made the decision that it couldn't hurt to try these things. And to tell you to this day, Virginia, I have no idea if they've done anything or not. But it doesn't seem to hurt her. They put her on a, because of her agitation and her anxiety which and her physical abuse, she would get very physical, especially with me, we put her on an antidepressant. And then what has been added to the mix as she has progressed is Seroquel, which is an anti-psychotic, and that helps with the hallucinations and again, the aggressive behavior. So it was, I have no idea if anything is working, but I know that she seems calm most of the time, and happy most of the time. And that's all I can ask for.
Virginia Naeve 15:42
Did they did they say in the beginning that it was mild cognitive impairment, or did they go right into the diagnosis of Alzheimer's disease?
Lisa Up de Graff 15:50
They went right into the diagnosis of Alzheimer's disease. And the one thing I have to say, this was five years ago, I would sort of corner whatever doctor was dealing with my mother at the time and say, don't say Alzheimer’s, don't say dementia. She's very proud. She's very narcissistic. She will not handle it well. So whatever, whatever they spoke to mom, the doctor spoke to mom, they were very, they couched their language in sort of subterfuge. So they didn’t say, so you Alzheimer’s! You know, get your affairs in order, there's nothing more we can do for you. So what they gave me all sorts of resources to try and stimulate her and keep her engaged. And my mom didn't really want to do any of those things. And that was the source of tremendous sadness from for me. That was the hardest part in my learning how to be a caretaker is keeping mom safe, but allowing her the dignity of choice and free will. I could present ideas to her. But if she refused to do them, because I think in her mind, she knew deep down in her soul, I think she knew that there was something wrong. She didn't want to admit it, and to go to a swimming pool at the Y and take a class with people with Parkinson's, which was the only thing I could find that was safe for her. She refused. Or art therapy for people with dementia. She refused. I mean, time after time after time, there's a program my uncle was very involved in. And it's started in Los Angeles and now it's kind of country-wide, called Music Mends Minds. And they had a band called The 5thDementia, and they, it was extraordinary. My uncle played the piano and everybody had some form of Parkinson's or Alzheimer's or dementia. And they would practice twice a week, and then give shows once a quarter. And it was just lovely and touching and, and all these people were in the band were former musicians one way or the other. My mother refused because even though she had the cabaret act, she wanted to be the star of the show. And that's not how it worked.
Virginia Naeve 18:21
I was just saying, I bet she loved that. And she didn't.
Lisa Up de Graff 18:27
She hated it. She hated the idea. And it was a band for, it was called The 5th Dementia. So, it was for people with dementia. She didn’t like that at all. It's an extraordinary program and I certainly would urge any of your listeners if they have parents or loved ones that were musical in any way to look into it. It's an amazing program. I have no idea what they're doing right now. I think everything is virtual. But hopefully we'll all come out of that. And it provides community and the one thing I think we both have learned is that community is very important in keeping your brain healthy and functioning and vibrant. And what happens a lot of the time is people with Alzheimer’s is they become recluses because it's, people don't know how to handle it. And I'm sure you felt with your mom and I know with my mom, I'm good until I'm not. I can hear your question 69 times and answer sweetly.
Virginia Naeve 19:37
And then on the 70th time, you’ve had it.
Lisa Up de Graff 19:41
You've had it! And you're mean. And you feel so bad because they like don't know they've asked 69 times.
Virginia Naeve 19:47
My brother has a funny story of when he was driving mom around one time and she said, Where are we? And he said, Mission Viejo, mom. She goes, Oh. A couple seconds later, Where are we? Mission Viejo, mom. On the third time she goes, where are we? And he said, Rancho Cucamonga, mom. She goes, Oh, I don't think so. He was better at handling repeat questions than I was. I don't want to think about how I would have reacted.
Lisa Up de Graff
That’s priceless. Oh, I love it.
Let's get into the subject a little bit of caregiving. Where are you now? On your mom's caregiving? As I understand it, she's in her own home, which is lovely. Tell us, tell us how the caregiving is going now.
Lisa Up de Graff 20:48
Well, we my sister, and I felt that well, we realize that mom, because she told us, wanted to die in the house. And so we are moving mountains to keep her there. She doesn't want a pal. She doesn't want anybody else to bathe her. She doesn't have Alzheimer’s. She's quite fabulous. And tells me she looks 65 and quite wonderful. And my father just passed away a year ago. So now she asks about going on dating sites and what do I suggest? So my mom is really living in complete illusion. So we have full time care, we have for quite a while. Housekeepers, that’s so they…she loves to eat. She doesn't remember she's just eaten. So she's gained quite a bit of weight. But that's fine because it's better than the alternative which is forgetting to eat at all, which is what happens with a lot of Alzheimer’s patients. So she has somebody with her to make sure she doesn't fall. She's in a walker that now she uses and she is safe. We've, I had a social worker from UCLA Alzheimer’s program come out to the house, and basically kind of baby proof it. Tell me what to take away, where to put bars in the bathrooms, in the showers, area rugs to take away. It's a one story house, thankfully. So mom is as safe as she can be. She's well fed. The housekeepers, she's incontinent, which is unfortunate. But I go over at least four or five times a week to run around with my dog who gives her unconditional love, talk about the beautiful view of the city and shower her. And she sings show tunes to me while I'm showering her at the top of her lungs, which I know I will miss when she passes. So I try to enjoy it.
You will, you will. You'll miss that.
Lisa Up de Graff
And so for right now we are one step ahead. We were planning on if she needs a pal to help her dress her or whatever, that that's our next step. We're trying to keep her at home. We do know that some patients go into assisted living and mom is too aware still to accept it. And we're afraid with her personality, she'll be booted out because can be quite difficult. So we're really we're really kind of saving ourselves the headache of mom like being bouncing from care to care. So that's what we're doing. And we're just you know, everything is evolving, and everything is fluid, and everything is dynamic and not static. So we're aware that this is fine for today. But tomorrow things may shift.
Virginia Naeve 24:02
I’m glad you know that now.
Lisa Up de Graff 24:03
Yeah. And have a lot of resources. I would urge your listeners, I'm sure UCI has the same sort of resources as UCLA, but there are many different, my mom sees a caseworker who has been able to make recommendations for different agencies or different programs. There's a lot of resources out there that you don't really necessarily know about, and when you get the diagnosis you feel frightened and stymied and overwhelmed and there's a lot out there now, a lot out there now to help you guide you and to making the next steps and you won't always do the right thing and it's okay not to. Everything is a learning experience. None of us really know what we're going through with this and the worst part is that it can be difficult with our parents or our loved ones not wanting to accept the diagnosis and not wanting to try new things or do new things to help themselves. So it's being patient with ourselves and kind.
Virginia Naeve 25:22
I was going to wrap up by saying, what advice do you have for people in your position? But I think you just summed it up beautifully. You have to reach out for help. It's out there information is out there, education is out there. And the sooner you do it, the better.
Lisa Up de Graff 25:40
Absolutely. Amen. Ans if you try one place, and it doesn't work, there's so many different places online to get resources in your area. That just because one doctor is unkind or you don't find the program that fits for you and your family. And there's just a lot of resources out there. And certainly we both are big fans of Maria Shriver, who started the Women’s Alzheimer’s Movement. And she, if you subscribe to their newsletter, their blog, there’s certainly a ton of information that comes through every week on all the new programs that are out there, the best exercises, brain food, activities you can do, because I think what Virginia, you and I have talked about a lot, is what do we do for ourselves? Not wanting to know if we have that gene or not, that will express or not express, and what can we do for our own lives to prevent the ultimate diagnosis of Alzheimer's?
Virginia Naeve 26:52
You hear it all the time now, the best thing to do is to make lifestyle changes. And we have control over that. But, we don't really have control if we have one or two copies of the APOE e4 gene. But whether they express, we do have some control over that and there’s studies on that every day. And UCI is actually doing quite a bit on those research issues. So I, you know, thank you so much for your time. Very valuable, wonderful advice, good stories. Everyone's going to have their own story. And it'll be a little bit different from yours and for mine, but we sure appreciated your being here today. Thank you, Lisa.
Lisa Up de Graff 27:38
Thank you, Virginia.
Virginia Naeve 27:39
Talk soon. Bye.
Steve O'Leary 27:43
Spotlight on Care is produced by the University of California, Irvine Institute for Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information visit mind.uci.edu.