Me and My Alzheimer’s | Episode 1: First signs that something is wrong

My mother was a business owner. She owned her own hair salons for 18 years. She was a world traveler and entrepreneur when she had me I was her 39 year old surprise. She thought she had the flu but I was a nine month flu. And so she actually left and gave up her business and joined the local education system. She was also an educator someone who very much cared about leaving things better than she found them. My mom was someone who is still very bold and Unapologetic and who she is and deeply cares about the people around her. He was very independent. He was like a big, you know, social butterfly. He would go out dancing. He had lots of friends and his dancing circles. They would go here music like Latin music and dancing. He taught yoga. He would go on horseback riding trips.

An incredibly sweet person a very warm mother.

She was a writer by trade and also that was like a passion of her she wrote poetry. She traveled a lot. She taught a poetry class in the local jail. She enjoyed spending time doing activism work and had a large community there and just was generally on the go and busy my mom took care of everyone. It was just known that she was the person in the community to feed people to make sure that they had money she made sure that everyone had clothes no one that knew her was with out if they needed and that was one of the things that has followed her even to this day. She was just so full of joy and always made sure that again everyone had everything that they needed and she made sure that she led her life with the love of God and that she loved everyone and was kind to everyone first of all we met when we were freshmen in high school and I fell in love with her.

Immediately and so we dated and went steady and got married and four children 13 grandchildren and now nine great-grandchildren very energized and enthused about helping Early Childhood youngsters. Get a good footing on life and just in simply if you would want to perfect person to be married to for 60 years. You would choose Elaine because of her caring her giving her compassion her sense of humor her understanding or insightfulness everything you could ever want.

I would fly home for holidays and notice that she was repeating herself asking the same question over and over again or should be like where did I place this item? And my mom was an educator and so you know, she she very much operated on routine and structure and consistency and she always had a clear plan in mind. I’ve never seen her more frazzled and kind of like all over the place if we were somewhere new and she went to use the bathroom. I would notice when she came out of the bathroom. She was sort of like turned around or

Leaving her keys in the door these sort of like small things like opening a carton of milk. That was once something she could do. It just was really difficult all of a sudden and things sort of cumulatively it became clear things were happening in sort of various areas more and more. I realized that bills were paid and laundry wasn’t done. So I kind of noticed I had to get more involved in his life. She would come up with stories about what happened if we would have met with some friends the night before she would come up with stories about what happened really crazy stuff, you know, not all the time but just wants to a while and then sometimes she was scratched the side of the car going in and out of the garage, but then all she was a great cook and sometimes she would mess up recipes. So badly that she would cry she was subbing after she retired and she wouldn’t go pick up her children after they had specials.

Like PE and music and then she would come out and forget where she parked her car. She forgot to pay bills and when she would come visit me. I was saying mommy. Why are you wearing the same outfit and she will wear the same thing over and over again, so she wasn’t washing her clothes and then it became a wait a minute. This is it normal. So it kind of triggered red flags say something is going on.

I’m Jack O’Brien senior editor of mmm. What you’ve just heard are caregivers describing their loved ones before and after they were diagnosed with Alzheimer’s disease this series me and my Alzheimer’s focuses on caregivers supporting their loved ones who are living with an incurable memory robbing disease. It’s estimated that nearly 7 million Americans are living with Alzheimer’s disease and by 2050. This number is projected to increase to nearly 13 million. Alzheimer’s has no cure Alzheimer’s has no treatment to reverse the effects of the disease and as you’ll hear in this series it not only impacts the patients who live with this disease, but also the caregivers from an emotional financial and legal perspective.

In the beginning when I didn’t have helped it was kind of like constant.

Daily freak out, you know for me and worry constant worry, I needed some medical intervention for you know, anti-anxiety medication to just be able to manage it without having it affect my whole being and my body to have a little bit of a buffer there where I can maybe think straight a little bit. There’s no automatic care that sort of comes into play. There’s not a lot of funding and I really think that was sort of the most shocking piece as I think and I think sometimes when I’ve talked to other people and they would say during that time like, oh, why don’t you just put your mom and care and it was like, well here is 7000 dollars ten thousand dollars a month.

and

we just don’t have a ton of money. So we need to figure out sort of how to make the money last as long as possible. And if there’s not other people and in our case there were in that just meant I have to somehow, you know, keep my mom safe and well and my child too living with Alzheimer’s disease could last a couple of years or even over a decade.

The experience is from the caregivers. We spoke to in the series are both Universal in nature.

But also unique to each person’s lived experience.

I want to issue a word to our listeners who are not just our usual mm audience of medical marketers where the US Healthcare System is in such a precarious place and is staring down the barrel of the so-called silver tsunami when they are going to be more and more retirees measuring into the millions. And the expectation is that there will be Millions more cases of Alzheimer’s disease. We want to unpack when caregivers first knew that something was wrong how they acted to get care. What life is like on a day-to-day basis what the prognosis is for their respective patients and their thoughts on the future both in terms of treatment in terms of caregiver support and in terms of reforming the nation’s Health Care system before we delve into the caregiver testimonials the day-to-day existence of living with Alzheimer’s the treatment options available to this patient population and what the

future looks like we have to start in the past.

Alzheimer’s was discovered in 1906 by clinical psychiatrist and neuroanatomist Alloys Alzheimer who reported a quote peculiar severe disease process of the cerebral cortex. Well Alzheimer’s was discovered at the term of the 20th century. It wouldn’t be for another 80 plus years that renewed attention was focused on the disease in November 1994 former president. Ronald Reagan publicly announced that he was diagnosed with Alzheimer’s in a statement issued by his family. My fellow Americans. I recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease.

Upon learning this news Nancy and I had to decide whether as private citizens, we would keep this as a private matter or whether we would make this known in a public way President Reagan’s public acknowledgment of having Alzheimer’s disease significantly raise awareness of Alzheimer’s in the public consciousness.

This is something that was repeated To Us by numerous caregivers that we spoke to for this series that those who may not have even known what Alzheimer’s was learned about it or at least had their first exposure to it. When President Reagan went public with his diagnosis. What’s notable about this statement is that even 30 years ago? The Reagan family acknowledged the disproportionate impact that Alzheimer’s disease has on caregivers. Unfortunately as Alzheimer’s disease progresses the family often Bears a heavy burden. I only wish there was some way that I could spare Nancy from this painful experience.

When the time comes I am confident that with your help, she will face it with face and courage something. I realized over the months of interviewing Caregivers for this series is exactly what the Reagan family highlighted in that statement that it takes a lot of faith and a lot of courage to face this disease as a character. I want to introduce you now to some of the caregivers that you’re going to hear throughout the series.

Hi, my name is Ty Lewis. I am an advocate a certified dementia care practitioner and the caregiver of my mother Gertrude Jordan who was diagnosed with Alzheimer’s with behavioral disturbances and 2014. My name is Annika Leon Weil. And I am the caregiver for my mother Barbara who has Alzheimer’s disease. My name is Jessica sea Guthrie. I’m the full-time caregiver of my mother constant who was living with Alzheimer’s disease and I have been her full-time caregiver for the last 10 years.

Have been both a long-distance caregiver. And now I’m the sole caregiver at home with her in addition to being the full-time caregiver. I am an educator. I’m a speaker and I’m an advocate and former full-time worker. So at the age of 36, I feel like I’ve done more than most people in their lifetimes caring for my moms. My name is Helen Chantel Pike and I currently live in the Northeast Kingdom of Vermont and a town that my ancestors settled up to the American Revolution. I’m a writer a photographer and a community activist. I am an older adult who still works and as had some experience with all timers taking care of my dad. My name is Robin Zachary and I live in New York City. I am an artist photographer stylist designer creative. My father lived across the street from me. I guess five years ago. We started to notice something off with my father we

Aren’t sure what it was. It was a summer. I think 2019 and he was dehydrated and acting really weird and a couple of his friends called me and said he’s not he doesn’t seem okay, so something isn’t right.

A lot of the caregivers that we spoke to for this series did not know a ton about Alzheimer’s disease Beyond President Reagan’s diagnosis, even then their exposure was limited. However, there might be people in this in the audience that are familiar with Alzheimer’s disease because of what they’ve seen in the media in the 30-year sense Reagan’s diagnosis was made public Alzheimer’s has been a recurring theme in many popular movies and television shows think about 2004 is the notebook and which Alzheimer’s disease is a part of the twist ending for that Romance movie. You have Gray’s Anatomy, which has an underlying storyline revolving around a patient with Alzheimer’s fast forward a decade. There’s a documentary from Glen Campbell about living with the disease that he ultimately succumb to Julianne Moore received in the Academy Award for best actress for her portrayal of a renowned Linguistics Professor who is diagnosed with early onset Alzheimer’s disease and still Alice.

In the early 2020s 60 Minutes documented music legend. Tony Bennett’s last concert following his Alzheimer’s diagnosis and this year the Eternal memory was nominated for best documentary at the Academy Awards centering on a Chilean couple journalist Augusto gongora and his actress wife Paulina orecchia and the impact of gongora’s Alzheimer’s disease diagnosis both on him as an individual as well as their relationship with her serving as his caregiver and mmm summer internal who assisted in the production of this podcast series not only did she record the excerpts from the Reagan statement that you heard earlier. She also assisted in Booking guests and researching and we are very grateful for her efforts on that front.

It should also be known that Molly’s a fan of Gray’s Anatomy and made time to speak with us about how Alzheimer’s plays a major role in the plot of the long-running medical drama. So we’ve got the notebook. We’ve got Still Alice. We’ve got all these different shows and movies and pieces of art that dealt with Alzheimer’s what is the Alzheimer’s angle to Gray’s Anatomy, which I think a lot of people would say is probably the preeminent medical drama of the 21st Century.

Yeah, so Alzheimer’s is a major narrative throughout the show. I know the show’s been on for decades and it remains an extremely pivotal theme throughout and that in the first episode the main character Meredith, her mother was a Trailblazer and a extremely talented surgeon who was diagnosed with early onset Alzheimer’s and is put into a care facility Meredith has to Bear the burden of her mother’s illness by herself as she hides it from her friends throughout the first couple Seasons before eventually sharing with them her mother’s Journey. They work throughout the show on clinical trials and different attempts to combat Alzheimer’s especially one of the main characters as a brain surgeon. So his focus is Alzheimer’s studies and they’ve yet to you know have success, but I’ve seen in the recent Seasons, too. They’re still trying

She is hiding this from her friends. What’s the reason behind? This is It’s stigma or is it shame? What’s the reason? Yeah, I believe her mother prior to losing her lucidity.

Had asked her daughter Meredith to you know, maintain her reputation by keeping her illness a secret.

Which is something that I think we’ve kind of seen and going through this.

Series is that people really Pride kind of get kind of goes back to the Reagan of it all where it’s people saying like I want you to remember me as this certain way as somebody that was in control their faculties. That’s the person that you’ve known and loved rather than this kind of diminished sense of self. Yeah, and I know it was a big theme upon finding out of her mother’s illness a lot of her co-workers who would work with her mother and who would in fact loved her mother started to go and visit her and though it was definitely a difficult situation where she knew that her mother didn’t want them seeing her like this it was important and it really helped her mother and her treatments and just improving her way of life. What did it mean for you as a viewer of the show? Like how familiar were you with Alzheimer’s before you even started watching Grace? Yeah. I didn’t know much about Alzheimer’s before sides. Just knowing from life and people around me kind of having family members and such. I didn’t have any

direct impact with Alzheimer’s

but I think it just showed me how common it is and the fact that it’s such a big narrative on such a you know, Big Show that covers so many different Medical.

A topics was very telling to just the severity and the complexity of the disease. It’s interesting too the point you bring up there because you know, I admittedly hand up never watched Gray’s Anatomy, but I had always assumed it was a show like house or ER you name your your hospital drama where it’s all these different conditions the idea that there is a long-running theme on Alzheimer’s is kind of unique in that way where it’s like they’re focusing on this disease. Yeah. They’re actually if you look it up on social media and stuff. There is a lot of conspiracy theories that the show is going to end where this narration is her daughter reading her old journals and she has Alzheimer’s herself. So there’s a lot of it’s very deeply embedded in the plot which would just be like the notebook out of this representation on Gray’s Anatomy Shonda Rhimes. Who is the creator of Gray’s Anatomy has also teamed with the Alzheimer’s association’s my brain movement to

heightened awareness of the disease of which there’s a higher risk of African American patients Contracting it or developing at

my mother’s like real development of all timers coincided and I don’t think it’s coincidental with the start of the pandemic. I think she became more and more isolated.

And also as things sort of shifted in the pandemic we started talking on the phone a lot more often and doing more zoom calls and I started to really notice and be concerned about things that I saw.

Which triggered me to spring into action basically. She also had.

Sort of as part of all of this what we now believe is an episode of delirium in which she ended up being hospitalized and that was really the catalyzing event that triggered me to move closer to home.

And so when you talk about having that instance of delirium and she’s in the hospital, was that something that you then go to her care team and say hey like we’ve noticed these sorts of issues that she’s been having recently. Can we put her in for an MRI or a brain scan or was that something they did independently, like how do they arrive at that Alzheimer’s diagnosis actually wasn’t diagnosed with Alzheimer’s until

two years after that incident

But I decided to move home during that incident she did have all these brain scans done at the time and the results were really inconclusive. They thought it might be a medication issue. They thought it might be a mini stroke. They really sent us home from the hospital with very little information or really any answer’s and I really had to consistently

At that point become more involved in her care. She already had a neurologist because she had a pain condition and I it took another yeah a couple years of my insistence sort of that something was wrong and that we needed to get some answers before she was diagnosed with Alzheimer’s

I brought him into like a walk-in Place one of the like cdmd type place and they detected some kind of heart.

Irregularity and they were like you’re going to the hospital. So I took him to the ER they immediately hooked him up with Ivy and he started coming back to life and he spent a week in the hospital and was getting tests for everything under the sun. Nobody mentioned anything to me about a possible Dementia or anything like that. They were just checking, you know vitals and heart rate and they didn’t find anything wrong with his heart. So he went after a week he went back home and I realized you know, he took him some time to get back to normal after being in the hospital and he was in his 80s at that point late 80s, but very he had been very active driving doing teaching yoga horseback riding all kinds of things and I realized that bills were paid and laundry wasn’t done. So I kind of noticed I had to get more involved in his life. He’d been living alone for like 40 years.

Course, but you know had lots of friends but nobody special in his life. He had one best friend, but nobody was really at ever at his apartment and saw what was going on and it didn’t even occur to me for about six months that I should get him checked, you know, cognitively I brought him to his own physician for some follow-up tests and I asked him to check on him and he asked him like some basic questions like who’s president. What month is it? He got all the questions right in the doctor looks straight at me and said, I don’t see anything wrong and you know, it was like

Okay that you know, my father was acting strange. He was not taking care of.

Things at home, you know all of a sudden from not being involved in his life. We weren’t specially close but we did see each other from time to time. I sudden had to start doing his laundry with him and paying making sure his bills are getting paid and then you know, I finally found another doctor. I found I looked up and found a geriatric specialist with NYU. I brought him in and I said, you have to check him for some kind of dementia and he did his screening on him and he was like, yes, he goes. This is definitely a case of dementia and I said, so it must be in early stage. He goes. No, I think it’s a lot more than early at this point. She had a major car accident. She was driving to church which is again a place. She went multiple times a week and I

Wasn’t with her, but I deeply believe she is the cause of the accident because she didn’t react fast enough. And so it was those three moments that really like.

Said something’s not right. I noticed that she was like having forgetfulness. But the Judgment of behind the driving was the biggest trigger for me which very much led to

A more intense conversation with primary care physician and a neurologist and can you walk us through that because we’ve talked to a number of caregivers who said like, you know, oh, we’ve raised these concerns the forgetfulness that having an accident the you know, you name it whatever those primary concerns were and then they’ve had instances where their hcp or physician was like. Oh, it’s just this or maybe they were disregarding. What was that experience like on your end?

Yeah, so I was really fortunate my mom’s brother is a doctor and when my mom left to visit him one of the first things that they did was actually go do like a visit to the rush memory Clinic which is in Chicago and they did like initial testing. So I have the right language and questions to ask when we were back here in Virginia. And so I to be honest and I tell people all this all the time if you notice something I completely skipped over the primary care physician. I asked them for referrals to a local neurologist and she gave me some phone numbers. I called them myself and scheduled it and I said these are my concerns and so I went to the person who could actually give me answers versus waiting for a PCP who didn’t really have a relationship with my mom to like go back and forth. And so I think that’s my encouragement for many people is like if you have an inkling like ask for the thing you need to get to the answer that you need versus just assuming that your PCP.

Going to look out for you. It’s good to hear that in terms of a proactive approach their how long from saying. Oh, we’re gonna have her go in and see a specialist to gain that diagnosis. What was that timeline? Yeah. So our first visit was the summer of 2014. So July and then for our concerns what typically happens is they do a set of initial testing and then they also do like your brain scan and all of that and then you come back for testing again like redo that same kind of cognitive assessment. And so it was from basically July to the end of The Intercept Timber we had the diagnosis that it is likely that it’s early onset Alzheimer’s disease based off of my mom’s performance on all the assessments.

So for us it was actually fairly quick and I credit the fact that I knew who to go to For What and was like holding people accountable mainly because I didn’t live here. I was going back and forth and had to be really intentional of my time. My father who has had a PhD from Harvard University was always a little bit eccentric. So trying to figure out where that line from eccentricity to losing his cognitive skills was a very blurry one and and it was only by living with him that I realized that from a cognitive standpoint. He wasn’t able to make decisions and he had put up a very good front via telephone that made it seem like he was fully functioning and was in control of his finances and could drive a car and was eating well, but I came to realize that all the meals I had prepared for him remained frozen in the freezer. He never called them out. He didn’t have a microwave but the time and he was pretty much eating.

Cereal and ice cream that he would buy the grocery store.

So since I’m a writer by trade, I realized that the only way this is going to work is if I moved home and started freelance writing career and whatever else I could Cobble together and try to get his Affairs in order and try to get him as best situated to live out. However long it was going to take for him to live out the rest of his life and I Was preparing and did prepare for that as best I could

So many caregivers have different stories and it’s hard to get their loved ones to see what’s going on. And then transition to look I’m going to the doctor one of the biggest events that happened that triggered everybody in the family. Was that mommy. She said that family

Friend stole from her and so it became a big mess when I say big I’m talking about a big mess and it became like the accusation you stole money from me and it was like she said it was a large amount of money. And so it really caused confusion within the family and that coupled with all of the other symptoms that we saw it was like, okay it’s time for you to go to the doctor and I truly believe deep down inside even though Mommy did not say it that she knew that something was wrong. And so she wasn’t hesitant about going to the doctor. She actually was like, okay, I will go and I made that appointment to the neurologist and Atlanta and we went and that is when we received the diagnosis.

On the next episode of me and my Alzheimer’s we hear from caregiver Jessica Guthrie about a day in the wife caring for her mother who’s living with Alzheimer’s disease. We’ll also hear from a leader in the assisted living space about how the industry has responded to the influx of Elder patients dealing with memory loss issues as well as journalists covering this evolving space and we’ll delve into the financial and legal component associated with Alzheimer’s disease and caregiving