Ep 82: Doreen Monks – The Emotional Journey of Alzheimer’s and Dementia (part 1)

What if your life and career were upended with a diagnosis of Alzheimer’s only to learn eight years later that the diagnosis was wrong?  In this BrainStorm episode, host Meryl Comer talks with Doreen Monks, a former neuroscience nurse practitioner, who was diagnosed with early-onset Alzheimer's at 63 years old. Doreen shares her emotional and professional experiences, the frustration of misdiagnoses, and the advice she has for others navigating similar challenges. They also discuss the crucial role physicians and caregivers have in empowering those with dementia.

Tune in to hear real, raw conversations about ways the stigma of Alzheimer's trends younger and how to adjust to find purpose and support along the way.

BrainStorm by UsAgainstAlzheimer's is sponsored by Genentech (gene.com)

Produced by Susan Quirk and Amber Roniger

Transcript

Doreen Monks  (00:01):

Anything you ever thought real life was going to be from going forward is gone. And I had no clue it was really what I was supposed to do next. You're in this little black window for a period of time trying to sort of figure out, I'm an optimistic person, so it's hard for me. I I wasn't going to stay down long. And I knew that. And I just had to kind of reset myself, you know, into this new person. It was like the bobbing wheel of, of diagnoses. And again, I knew what was going on. I understood all the information they were giving me. I understood the testing, I understood the process. It was, none of that was scary to me. 'cause I had spent my life doing that. What I feel for is the regular person. There's not a lot of data about it. It was just very vague, very dark disease that nobody talked about when it was a no, I was furious and sad, but I didn't know who to react to. You know, who do I get angry? Who am I mad at? Whose fault is this? You know, not mine, but it's really wasn't anybody's fault. So it was just a tumultuous time. And, you know, I finally got to the point where I thought, well, you know what? You dealt with this before. You just deal with it again. And now I'm on a new journey to find the, what the real diagnosis is. You know,

Intro (01:22):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver, an Emmy award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.

Meryl Comer (01:38):

This is Brainstorm and I'm Meryl Comer. The Alzheimer's community is in a silent crisis. 50% of people believe to have dementia go undiagnosed. And a shortage of trained neurologists keep people and families waiting up to a year or more to be seen by a specialist. Our guest today is Doreen Monks, a former neuroscience nurse practitioner, diagnosed with early onset Alzheimer's at age 63. Was told eight years later that her updated diagnosis was mixed dementia. I asked her advice on how to prepare in advance of seeing a specialist because you're losing precious time while waiting.

Doreen Monks (02:21):

I have to say that my reaction was more visceral. Not that I was prepared for the diagnosis originally. It was just I had the diagnosis and that I went about being the pragmatic nurse that I am about what I needed to do. And, and just decided, okay, well I have to deal with this. So I was dealing with it I thought, for the eight years, you know, or so that I had it. And then when I got the no diagnose that you don't have, you know, the Alzheimer's disease that you, you know, had a PET scan, Emily PET scan, it was normal. I was so floored. I don't think I could, I could react, you know, I was with a friend of mine who was my study buddy, which is, which is how this all came about. And I just looked at her and we were both like, couldn't speak.

Doreen Monks (03:03):

And then I was angry. I was very angry. So much had happened in those eight and a half years or so that I'm never getting back, never getting back. I owned my own home. I had a job that I loved with a good salary. I had my dog, who was my family. You know, I had a lot. Just my life was full. It was where I wanted it to be. And my, my plan was to just, you know, die at my desk. I loved my work. It was just me and Abby, you know, I thought, well, if I get old enough, I'll just bring her as a companion to work and we'll just spend the rest of our time together at work. When it was a no, I was furious and sad, but I didn't know who to react to. You know, who do I get angry? Who am I mad at? Whose fault is this? You know, not mine, but it's really wasn't anybody's fault. So it was just a tumultuous time. And you know, I finally got to the point where I thought, well, you know what? You dealt with this before, you'll just deal with it again. And now I'm on a new journey to find the, what the real diagnosis is. So it's almost like starting all over again. But more emotional this time than last time.

Meryl Comer (04:10):

Doreen, let's go back in time a bit. Can you describe your professional focus as a neuroscience nurse practitioner before your original diagnosis?

Doreen Monks (04:20):

I worked as a neuro nurse practitioner for almost all 30 or so years. And the primary point of my practice was actually in stroke management and treatment and community education. I actually developed a stroke program at St. Barnabas in Livington, New Jersey and was the program director. And I kept that, you know, position until I, I stopped working. You know, I had a, a staff of six people, a vascular neurologist who was very dear friend and I had four other nurses that worked with me. We were six women, a little group, but really ran a, I think a dynamic program. I wanted to stay until we got some other certifications that we were planning on, you know, and I thought, well, I'm 63, I think I, I have still energy to work. Just what would I do if I stayed home? I loved it. I did a lot of teaching, did a lot of community work. I treated patients, you know, I worked with the physicians. It was just a very well-rounded experience and every day was different. You made plans and sometimes they worked out and sometimes they didn't because patients have a way of popping in. When you were at least expected

Meryl Comer (05:23):

As a bedside nurse who cared for patients with vascular dementia, what were your personal feelings and emotions about their challenges?

Doreen Monks (05:32):

Well, you know, my mother actually had vascular dementia and I took care of her for four years or three years herself with the patients. What happens in the brain and when the vascular dementia is like you pop off a little vessel and then you pop off another vessel and you pop off another one, eventually they all kind of connect and then you get the dementia related to vascular dementia and you know, it's heartbreaking, you know, 'cause you're working with the patient and the family. There was still not a lot, you know, going out, you know, there was no treatment. The treatment for vascular dementia was really preventative, treating high blood pressure, cholesterol problems, et cetera. So there was really nothing to do for them except try to keep them as best top physical condition that you could. It's always been, you know, something that part of me wants to run away from the other big part of me wants to stay, you know, and try to make it better.

Meryl Comer (06:25):

Doreen, you're a very smart lady in hindsight. Were there signs and symptoms in your professional work that you simply ignored?

Doreen Monks (06:34):

I had no clue at first. And then my medical director, again, my friend neurologist, she knocked on my, on my, my door actually in 2015. This was, so that took a long time for a diagnosis. But, so she knocks on my office door at nine o'clock in the morning in October and she said, you know, something's going on with you and we need to, we have to talk about it. And then she's started to explain things and I thought, my god, she's right. And when I look back, I've never been a paper person, you know, I used to always say patience before paper, but I just, my administrative role got, you know, more complicated. I had more paper things to do and documentations and et cetera. And I was starting to have difficulty with them. At one point I went for an evaluation. They said, clinically you're a stellar, but you know, we're not going to give you a raise this year because you're still having some difficulty increased, you know, with the increased responsibility. And that had never happened in 40 years as a nurse ever. I was devastated, you know, I know you're getting dumber, but as you get older, something happening with your brain, you know, never thinking it was that the dementia, just thinking that something wasn't right, that I wasn't getting it, you know? And it was my fault.

Meryl Comer (07:44):

So Doreen, what advice do you have for people who notice something in a friend but are afraid to say something?

Doreen Monks (07:53):

It's a very hard conversation to have, but you have to have the conversation. You can practice it until you feel comfortable. You know, sometimes it's easier to bring up, you know, did you ever notice that this is happening? Or did you notice that this is happening? And kind of let, help them get to the realization with you. But the worst thing is to not do anything. That hope window is very narrow. And if you don't bring them to the realization that something's going on and get them tested, that window is resolved. You can move very quickly out of that window. Now, at some point, a couple years from now, we'll have better treatments that will be farther into the, the disease. But right now we only have early, early disease. So the earlier you can get diagnosed and the earlier you can help your loved one or your friend or your whoever you can help them get into, get to the realization that there's a problem and get to a possibility of getting a treatment. You know, getting diagnosed. You would be no better friend than to do that.

Meryl Comer (08:54):

You know, the diagnostic experience is a challenging one for families. How was your experience?

Doreen Monks (09:02):

I've been a neuro nurse since 1975. I like to tell everybody I was 10 then, but that, that joke is so old and it's, I'm so old it doesn't work anymore. What I know, it was difficult. It took me literally, I think 13 and a half months to actually get a diagnosis in the hospital that I was working with. The neurologist who was on my payroll wasn't anybody's fault. There was no test at that point. Alzheimer's was basically a clinical diagnosis because the only way you could identify it is actually through autopsy. It was a clinical diagnosis based on, well it looks like this, this looks like this and this looks like that. And you put them together and you have Alzheimer's disease. I can't tell you how many scans I went for how many EEGs I had, the 73 gallons of blood that they drew from me.

Doreen Monks (09:50):

And then it was like, you have mild cognitive impairment, but you don't have Alzheimer's. Then I had Alzheimer's. But I think it's a frontal variant. And then, well maybe you have frontal temporal dementia. And then we went back to a, it was like the bobbing wheel of, of diagnoses. And again, I knew what was going on. I understood all the information they were giving me. I understood the testing, I understood the process. It was, none of that was scary to me 'cause I had spent my life doing that. What I feel for is the regular person. There's not a lot of data about it. It was just very vague, very dark disease that nobody talked about. So there wasn't not a lot out there. So, and even now it's still a journey, but at least now we have someplace we can start the process.

Meryl Comer (10:35):

Doreen, let's continue to retrace your journey. Even in 2016 there was tremendous stigma around the disease. At 63, your in your prime and you're handed an Alzheimer's diagnosis. What is the reaction of those around you and what happens professionally?

Doreen Monks (10:54):

I told most people that I was retiring. You know, I just didn't want to have to deal with all of that. Gee, that's awful. And oh my God, what are you going to do now? And all that angst everybody else is going to have. So I wanted to hide from that. I did tell some, some people who I'm close with, obviously, I told my staff and basically the neuropsychologist that I was working with felt very strongly that my position was too much stress for me to be working at. So basically I got the actual diagnosis in April of 2016. And by July 18th, 2016, it ought to work. Anything you ever thought real life was going to be from going forward is gone. And I had no clue it was really what I was supposed to do next. You're in this little black window for a period of time trying to sort of figure out, I'm an optimistic person so it's hard for me. I, I wasn't going to stay down long and I knew that and I just had to kind of reset myself, you know, into this new person.

Meryl Comer (11:54):

Teach us how you reset yourself.

Doreen Monks (11:57):

I have to find something to do. You can only clean so much, you know, you can only cook so much. You can only shop so much, especially since you don't have a lot of money anymore. So God knows I can talk and I love to teach and I thought, well if you think about it, Doreen, while you have this diagnosis, you are really okay. Like you're doing fine. I mean, not think about the work stuff, just life stuff. I mean I did this all on my own. I mean I have family and they love me and I love them, but they were not in at all involved in any of this. I thought, well you got yourself straightened out. Now what do you want to do? I'm lucky in that I can still manage myself. I can still take care of myself. I'm still, to me the same person, but different than I was a few months ago.

Doreen Monks (12:41):

I want to work with people in similar situations as mine because I'm expecting to have a good life. 'cause I think I deserve a good life. And if I deserve it, so do they. And I think it's very easy to get when you get this diagnosis, just say, oh my god, my life is over. And that's not what it is. It may be still a fatal disease, but it's not a death sentence. But that's what people take because in their head they have a picture of this very sick person lying in a hospital bed or a nursing home bed, just not able to function at all. So let me see if I can work with some people and be more proactive, give a more positive outcome, not a foolish outcome. I'm not going to tell everybody, oh, this is exciting. Everybody deserves to have the best life they can. And I wanted to be able to help them do that.

Meryl Comer (13:34):

Did you find efficacy empowering?

Doreen Monks (13:36):

Oh, it was like life changing. I met a lot of people, heard a lot of stories and some very tragic, tragic, some uplifting. I like to think I help some people. They certainly help me. I have a new purpose and that's all everybody needs in their life is a purpose to go on. They give that to me and I hope I give that to people I work with.

Meryl Comer (13:59):

During, based on your personal experience with an early diagnosis, describe the impact,

Doreen Monks (14:05):

The hard reality of this disease. And I remember I had gone to the Alzheimer's Association's website and they had a, a list of things to do when you get diagnosed. And I did every one of them. I have a living will, a dead will, a power of attorney, a financial advisor, I, all those things. Average lifespan from diagnosis to death was nine years. So I thought, I'm lucky if I make 70, I'm not sure I'll make 70. So I planned for that. But now the earlier the diagnosis, the better control you have over everything. You should plan your own future the way you want it. I lost 70% of my income. I had a long term care policy, insurance policy that lasted for five years. They thought maybe I'd be dead by then. I'm not sure. So I think if people are getting diagnosed now, planning for your future, but being proactive and being your own advocate, that's really important. If you're going to the physician and you're talking about things that are concerning you and you're getting, don't worry. Don't worry. You say, I am worried. And if I'm worried, you have to be worried. 'cause You're my physician, they work for you, you don't work for them. Probably going to get in trouble for that.

Meryl Comer (15:11):

Let's stay with that issue. I want you to talk to physicians, tell them what they need to know and how they should behave with people who come with concerns beyond another medical issue they're dealing with. What advice do you have for them?

Doreen Monks (15:25):

The most important thing is to believe them. You must believe them. Nobody knows you, including your brain better than you. I saw my primary care physician, that's when I started this process and she said to me, Dorian, I don't see anything, but you know what, I'm not a neuropsychologist. Let's look at this. Let's start the process. I was very lucky. And that's what every physician should do. Even if you, your SUS index of suspicion is very low. You have to take that complaint seriously and start the diagnostic process for a couple reasons. First of all, if it's a form of dementia, again, the earlier the diagnosis, again, if it's Alzheimer's, the better likelihood you get a treatment. But the other thing is, there are things out there that cause dementia, like symptoms which are reversible. Thyroid problems, kidney problems, you know, if you have diabetes, difficulties with your glucose management, there's a lot of things out there that mimic that. You know? So you want to get those because you know, if you let that go, that becomes a chronic problem. So the most important is believe your patient and then follow up on it.

Meryl Comer (16:26):

Our guest today is Doreen Monks, a former neuroscience nurse practitioner who was diagnosed with early onset Alzheimer's in 2016. At age 63, 8 years later, she was told her diagnosis was wrong. In part two of our conversation, we talk about ways family members need to be proactive to be heard by the medical community.

Doreen Monks (16:51):

I think if there's somebody with you, you know, like my husband is the person who's having difficulty, absolutely you must go with them and write down everything. Carry a note. So literally with a piece of paper, say, these are the things that I have been noticing my husband doing over the last two months, three months, four months, whatever. And I need them to be evaluated 'cause that's really important.

Meryl Comer (17:14):

That's it for this edition, my Meryl Comer. Thank you for brainstorming with us.

Closing (17:19):

Support for brainstorm by UsAgainstAlzheimer's comes from Genentech. Genentech is prepared to ask tough questions to help tackle the root causes of systemic inequities in healthcare. Subscribe to brainstorm through your favorite podcast platform and join us for new episodes on the first and third Tuesday of every month.