Getting the Alzheimer's Diagnosis: The Day We Had a Name for It (Part 3)

This is Part 3 of our three part series on getting to our mom Rose's Alzheimer's diagnosis.

We take you from the beginning of April through to June 2025, to the day we got the blood test results that confirmed what we had feared. Along the way we walk through the neuropsych evaluation process, what moderate cognitive impairment actually means, the MRI results that made our parents think everything was fine, and the exhausting back and forth of trying to get everyone to see what we were seeing once all the puzzle pieces finally came together.

We share what it felt like to wake up on a Tuesday morning, open an email, and see a number that was nearly six times the positive threshold for Alzheimer's disease. We talk about how we told our dad, how he told our mom, and the FaceTime call that night where we all sat with it together for the first time.

This episode is also about everything that happens in the space between suspecting something and knowing it. The yo-yo of results that seem alarming and then get explained away, the frustration of feeling like you are being dramatic when the paperwork is right there, and the complicated grief of finally having an answer you were never hoping to be right about.

If you are in the middle of trying to get a diagnosis for someone you love, this episode is for you. Keep pushing. Get on every wait list. Bring a written list to every appointment. Fight to be taken seriously. The earlier you know, the more time you have to take action.

Walk with us! Join our team at the Walk to End Alzheimer's in Buffalo, NY this September 2026 — or donate! 100% of proceeds go to the Alzheimer's Association: act.alz.org/site/TR/Walk2026/NY-WesternNewYork?pg=team&team_id=1057467&fr_id=19818

Transcript

SPEAKER_02 0:00

Welcome to Conversations Through Alzheimer's. I'm Amber Marty and I'm Felicia Wood. We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025. We're documenting her journey as it happens and we're sharing every resource we find along the way. This is her story and ours.

SPEAKER_00 0:20

Thanks for joining us for week three of Getting to the Diagnosis. Today we're going to be going back um to the beginning of April, where we were talking with my dad about how her symptoms have just gotten to a point to where we need to take her to at least a PCP to discuss next steps on what this could possibly be. After that initial phone call, my mom went back to Denver and my dad did take it seriously. He talked to the PCP. This was on April 14th. Him and my mom went in there. They they said that they went in there for um an evaluation of cognitive issues. My dad reported forgetfulness. My mom was, my mom usually does the taxes every year. And I don't know exactly what happened. I don't know if she forgot to do the taxes or couldn't figure out how to use, I think they were using TurboTax or at the time or something. There was some big ordeal with the taxes that even my dad was like, wow, something is going on. And so he brought that up to the PCP. Um, and like I think he probably took the list that we told him of all the things that we found in Plattsburgh and he did agree that probably a neuropsych eval was the next step and a referral to a neurologist.

SPEAKER_03 1:26

That was probably one of the biggest wins that we got at that point because it had been over three or four months of just thinking that this was depression related, anxiety related. And I think that that concrete list of things that were happening was very helpful for the doctor to say, okay, maybe there is something more going on now. And so that coming in with that very concrete list is what I think really secured that neuropsych evaluation, which still took, I mean, I think from the time that that was recommended, it was another six weeks out. So again, it's just something that like we've learned along the way is like you really have to stay on top of as many appointments as you can and communicating as you can, because sometimes there's, I would say that six weeks is maybe even the shorter side wait for for all of this. So we were we were really glad that she could get in for that appointment when she could, which ended up being at the end of May.

SPEAKER_00 2:20

So after my mom went back to Denver, I went back to Orlando. I did have a trip planned for me to go to Denver in May. It was gonna be for two weeks. I am lucky enough to work remote. So I decided to take off one week for PTO. Um, and then I was gonna work remote the second week. And the first week, I really wanted to help my mom because at this point I didn't know it was Alzheimer's. I just knew maybe it was ADHD, maybe she just had like some organization lacking skills. Her room was just like she's always every time we call her, oh, I'm cleaning my room, I'm cleaning my room. But she we knew that she didn't have a the skills to actually organize. And like that's something that I thrive at. And so I like I wanted to take a week. I wanted to go through all she had boxes of like papers that she'd saved since like literally the 70s. And I was like, I'm gonna sit here for days and scan them in, put them on her computer file. I'm gonna tell her she needs to get rid of her printer because she prints out everything. I was like, we need to get her up to this century. Like, and and it was so interesting. Like a lot of the a lot of things that came out of this, like in hindsight, like I feel bad that I kind of pushed her to her limit, not knowing that she had Alzheimer's. Um, and one of those things.

SPEAKER_03 3:27

It was really interesting because you she was very emotional that week that you were working, like way more than we've ever seen her before. Because it's not like this came out of the blue, right? We've always taken okay, every couple years we go and we help her organize. So this, but this time it was very different.

SPEAKER_00 3:43

Yeah. Well, and it seemed like she was just more like maybe it's that emotional piece, but like more attached to everything. Like she she's not a hoarder by any means, but she does not like to get rid of things. Um, and I told her, I was kind of strict with her. I was like, mom, you are welcome to keep everything as long as it has a home and a purpose. If it doesn't, you can't just keep things about everything just because you want to keep it. Like, there is not enough space in this house. Your other option is going and buying a bigger house, but that's not a real option right now. So we have to get rid of some things. And it was like little things, like little toy, like light up rings. Like, I'm like, why do you need this? Oh, well, I might give it to so-and-so one day. And you know, like we're just very like millennials in general, of me and you have talked about, are very minimalistic people. So, like the idea of just keeping little toy things and whatever, I was like when things are just stacking up is a very different concept. And you know, like I tried to be empathetic towards different people, have different views on things, but I really think that from your perspective at that time, like you were very committed to simplifying her life.

SPEAKER_03 4:44

Yeah, exactly. Maybe some of the things that she's going through is because she can't find her. She is so disorganized, like she's wasting time. She's she had said, like, I want to know where these things are. Like, and again, in hindsight, that's again the Alzheimer's. She couldn't keep track of where things were. We didn't know it was because of at that point of what this the neuropsych evaluation reveal. At that point, we just thought, we gotta get her more organized. And you know, even think back to, I think we've said this piece about our mom over the years. It's like there was a period of time where like she was very tech savvy. And so we really thought, like, if we help simplify it, we put these things on her computer, like not only can we help her find it, like she can find it more easily. Like, but I think like it was really hard because I think you had to go in and and kind of just commit to what you had thought was gonna be best. And then we kind of quickly realized it was literally like a week later that best. Well, and it's talking about that. Like, what did what were some of the things that you did, and like what were some of the things that she how she reacted?

SPEAKER_00 5:47

Well, like one thing is like so she likes stationary stuff, and so she had just like you know, little pins, little notepads all over in many boxes. Like, as anybody who's done a deep clean of your room knows, like you just throw everything on the bed and then you make piles, and then you can make one box for stationary, for example. And then let's just say we're going through the stationary box, and I'm like, all right, we're gonna go through this box. I have more boxes on the floor, one kind of like the old um, what was it, TLC shows, like where they had like go in, like have like a throw away, give goodwill, keep creating spaces. Yeah, it was like that, like a mini version. So like I had a box for throwing away, like just trash, because there was, you know, miscellaneous trash in there too, a box for the goodwill, and then a box for keeping. And I don't even think there, I think there were just two boxes because if it was keeping, it was staying in the box that was that we had. And she was sitting there with me because I had to ask her, like, I didn't want to make that decision for her. I wanted her to be involved. Like, okay, what about this? And of course, she wanted to keep everything. So it was a it was a struggle for everything. I was like, no, well, you already have 50 pins. Like, what if we just give this one to the goodwill? But like, I would say, all right, well, we're both gonna go through here. And she kept putting the wrong one in the wrong thing. And I was like, mom, remember, this is the goodwill one, right? Right. And like the more we would do it, because it wasn't just like an hour of this, it was an all-day thing for a week. Like, I only had so much PTO time and we had a lot of work to do. And every time you thought you were done with a box, another box would appear. So I was like, we gotta keep going. And I didn't realize that like keep going for like an Alzheimer's patient just gets them more like I don't even know the word fatigued, I think. Like cognitively fatigued. Yeah. So she couldn't remember, and so then I was getting frustrated because I didn't know at the time.

SPEAKER_03 7:24

And remember that was hard because like there's like there's that dynamic, but there's also like the interpersonal dynamic with you guys, and like mom likes to please you, right? So like she wants to spend the time with you, and then she would have like emotional reactions, but then I could also tell that she was like trying to like try to push down or ignore how she was feeling so that you would feel happy with what you guys were accomplishing, which is also so silly, yeah.

SPEAKER_00 7:49

And like um, I remember near the very end of it because like again, like I like there was even papers, literally a couch receipt from 1993 that I was like, Mom, we need to throw this away. No, you can't throw it away. Like, what like what if the insurance needs? I'm like, mom, we don't even have this couch anymore. Like it was things like that. That was like it was very hard for her to like she was like emotionally attached to these papers.

SPEAKER_03 8:14

I think that that is where we start to really see her mindset and her exposure and like not understanding why you do the things you do, right? It's like exactly for her, it's just like she heard once like you need to keep your taxes.

SPEAKER_00 8:30

And it's like she thinks it forever.

SPEAKER_03 8:33

You can go to jail if you don't keep your copies of your taxes. Like same thing with receipts, like you have to have all your receipts, but to your point, you should be able to say, like, okay, well, I would no longer make an insurance claim on this, so I no longer need the receipt for that.

SPEAKER_00 8:47

It's like she couldn't make that connection of like what to keep, what to not. She just knows it's just easier for me to know that I need to keep everything. And like at the time, I didn't know why she thought that.

SPEAKER_03 8:57

Yeah, she but she reacts in such a way that it's like it's not just a preference of I want to keep track for my own records, it's more of an emotional, like something bad will happen if I don't have this. And so it was also really hard to make that make sense to somebody who has that belief. It's not just like a piece of information you could give them that then they update and then they can let it go. It's like for her, even though you would speak logic to her, she had that feeling. She can't comprehend the logic, couldn't comprehend it exactly and I did feel like really good afterwards. Like she definitely wanted it like cleared and opened up and everything. She was so happy. Yeah. But I mean, even afterwards, like, well, I don't want to cut off your story, but I was gonna say, like, even afterwards, I remember after you had flown home, or even just maybe that week you were there staying. But like, I think you had made a like a joke. You didn't mean anything by it, but like, mom, you better like be keeping what is that piece of paper doing on your desk? Like trying to kind of like keep her up accountable. She would kind of feel like like she she very quickly backslided back into her old ways way faster than we could have ever anticipated.

SPEAKER_00 10:09

Yeah. Well, and it's interesting because like near the end of that week, again, it we it was like a full-time job getting this. It was just one, like I guess one and a half room was cleaned. But it I I could tell like something. I mean, we already knew something was wrong from the April trip, but there was a few other things that came to mind is like one I told her, like, mom, you need to stop printing everything out. Like, look at what happened with all these boxes. Like, just save it as a PDF on your desktop. You can email it to yourself. Like, there's no everything is digital now. I think we should move your printer to the basement. I'm not saying get rid of it. We get it to have it set up, but the occasional time you need it, and like she, like that was her bottom line. No, F no, like it's staying in my room. And I was like, I didn't fight, like, you know what? Like, I've I've had my own way a lot this week and get getting her to change things. If this is her bottom line, fine. I think I I think we we made it net in the middle ground. We moved it to the living room. Um, that way it's not in her bedroom, and she maybe doesn't feel as compelled. But like I thought that was just such a strong reaction to this. And then, like, the other thing was um, I don't remember exactly what it was, but we did something. And at the end, she just looks at me and she's like, You you tricked me. You've been tricking me this whole week. And I just felt so blindsided because I've been very open and honest with her about everything we're doing, everything I'm throwing away. Like, I don't do things behind her back. And I was just so caught off guard by like the you tricked me thing. And I think that's very common for Alzheimer's later in the stages, but I think I had pushed her so much cognitively that like it kind of got to that point.

SPEAKER_01 11:41

Yeah.

SPEAKER_03 11:43

But like she didn't really know what was going on because she was masking a lot that week, right? Like, she she was acting like she knew what you guys were doing.

SPEAKER_00 11:52

And just going along with it. And then at the end, she was like, Wait, where's all my stuff? Like, I don't think she like put it together, but the whole time I was like, What are you talking about? We've been doing this together this whole week. What do you mean? I tricked you. Like, I was just so confused by that.

SPEAKER_03 12:03

Yeah, I was I remember that that was one of those, again, like we have to have grace for ourselves because we didn't know we you only know what you know in the moment. Like, truly, almost a year later, it's very easy to look back on that and be like, we should never have done that.

SPEAKER_00 12:20

We should never it was a wasted week of PT.

SPEAKER_03 12:23

Yeah. But like, you know, if it would have been 10 years prior, that would have been the exact right, right thing, right? But like we didn't know what we know now. I will say, like, getting to that neuropsych evaluation that happened, I think it was a week after you left. So the appointment was on at the end of May. Um, you were back in Plattsburgh by that point. Like, that definitely showed us a lot.

SPEAKER_00 12:46

Yeah. So it was actually May 29th, 2025, that she went in for her neuropsych evaluation um at National Jewish in Denver. Do you remember? Do you remember that um day very well? I don't remember the day very well. Like, I remember more getting the results back than like the day she went in. And I I do remember the day enough to where she it was like a long test. It's not just like a 30-minute quick slums test or something. It was like an eight-hour thing. Like they give you a lunch break and everything. And I think my mom said, like, can we skip the lunch break? Because I have to get home to my dog. Because I think my dad was out of town at the time. So, like by that time, she was driving to, she drove to National Jewish downtown by herself for this.

SPEAKER_03 13:27

That's what I that's what really sticks out to me is I remember having a lot of anxiety about the fact that, like, again, like they had just timed it so poorly. Like, here was this big test. Mom was by herself, driving downtown to National Jewish in Denver, Colorado, for this. And like, she was really anxious. She was anxious about like work. She was anxious about like going through the test. Anyone would be. She had a lot of nerves. And like, we were also a little bit. I remember feeling worried that like how they were going to be able to interpret the test, given like she she had been kind of progressing to this point where like as her anxiety was a big topic that was coming up for us, even while we were kind of sitting with all of this, because she would see that as her anxiety would start to peak, like she would have even lower verbal functioning. And she, we were really worried that, like, what if they can't get a good read on the test because of everything that was happening with her anxiety and her her mental state at that time. Even though that they had been really focusing on dialing into her psychiatric medications, it was still something that she was very nervous going into that appointment for sure. The results didn't come in for another week from the time that she went and actually had that test. And I think for all of us, there was an element of some anxiety. Like, of course, like we just had like, yeah, like how is it ADHD?

SPEAKER_00 14:48

Is it Alzheimer's? Is it yeah, is it nothing that they say she's fine? And yeah.

SPEAKER_03 14:53

And it was interesting because I think that if I remember this right, or maybe you can help me remember it. But I feel like there was this whole thing that happened where like we knew the results had come in, but we didn't know where to find them in her portal because at this point, we had never logged into mom's portal before. We didn't really have like associate accounts set up. It's like giving us access to things. And so my mom had said, like, oh yeah, I got the message that like my results came back, but we were like, Oh, she's gonna have to have another appointment in June to review them with her doctor. And so we, you and I were both pretty determined. We're like, no, they have to be we need to find it. And so I remember it was like it was like almost a week later, it was early in June. Somehow you found them like in an evening, like on a weekday evening, Thursday, maybe a Thursday or Friday evening, you found them. And I think both of us, like we were, I remember like my initial reaction, like a neuropsych evaluation. The results are not just like one line, it is a long test. There are many hour tests. They go through your visual skills, your memory skills, your reading skills, your attention skills. Yeah, language. There's so many different sections. And so this was like a multi-page summary. There was like a summary on top, and there was a lot of detailed information, like things that we didn't even expect to get, even around how she presented. Like it was like she was on time, she was dressed appropriately. Because again, sometimes when people are coming in for these evaluations, like that can be a big part of it. Like if their their buttons are are messed up or if their shirts on backwards or things like that, it was clear that mom wasn't falling into that category.

SPEAKER_00 16:40

Yeah, she looks put together.

SPEAKER_03 16:42

Yep. She looked put together.

SPEAKER_00 16:43

Showed up on time.

SPEAKER_03 16:44

Exactly. But it did highlight, like even through that first part of the summary, that like even in her initial intake, just getting to know the person who was doing more of the intake portion of it, they noted that like she was pausing on things that we we knew she would do, but like it was interesting to see how it would be described medically. Like, I think it said something like halting, word finding problems, like frequent pauses. Sounds like how I'm talking right now, but different actually, because and she she would do that. Like she would have a very hard time trying to find her words. There'd be like almost like stuttering involved to or just trouble finding her words, trouble making a fluent sentence. So that was that was interesting to see how all of that was kind of categorized into the summary. But after we're gonna spend a little bit of time like kind of talking through some of the pieces of this neuropsych evaluation because it is truly what like secured the referral for the neurologist at that point and kind of fast tracked it as well. And it's also what started to have me feel like a lot more sure of what was coming down the road. Like we didn't have the Alzheimer's diagnosis yet, but it was the first like tangible piece of evidence that something was definitely going wrong. And I am getting ahead of myself, but I do remember that after we got these results, it was pretty awkward. In hindsight, we probably should have been more delicate with how we like talked to mom about it and everything. But mom, mom couldn't really even process the results of this. And it was, it was hard for us in real time to process what was in this room in this test and try to tell it to her. Like now, in hindsight, I wish that we would have just really sat with it for a couple of days before we reviewed it with her. But at that time, I don't think we had any concept of that. Before I get too ahead of ourselves and how we process this afterwards, because I think we all had very different reactions to this. I just wanted to spend some time going through some of these, some of what we realized in the neuropsych evaluation. And I will, I will also say this is something that I had to read several times because there are it's almost like every little piece of it has a really important piece of information, right? Like I think, especially in a test like this, like they're not just writing a novel for the novel's sake. Like every piece of this is something that is either an important piece of the puzzle that they are putting together to find their final summary. But I'll say I will say and share straight from here some of the pieces that um we really had to go back with my dad and use over and over as evidence of why we were so concerned. Um, and I will say that again, that's why I think it's so important to read this very carefully because what I realized is that my dad could have picked the pieces of this that made it seem less likely that she had Alzheimer's, and that I was more focused on the pieces that kind of pointed to the fact that she might have Alzheimer's. And that's again why you have to have people who are engaged to actually read it from their own lens because you're gonna see things differently than how like somebody else is gonna see them from how another person is gonna see them, and having everybody's eyes on it is not only gonna help you support the person with the diagnosis, but it's also gonna show you a lot about how the people on the care team are going to interpret things throughout the journey too. Because throughout this, like we've kind of talked about it's been hard for my dad to really understand what is happening, and so I think that continued by the things that he noticed from this test. Anyway, pausing there, let me the piece that was most that stood out the most to me is that it's there was a piece in so a couple of things that came directly from the summary that kind of struck us the most. It said that she was impaired across most domains, including auditory and visual attention, verbal and nonverbal reasoning, hypothesis testing, learning and memory for story-like and list-like verbal material, learning and memory for visual material, expressive language, including naming and fluency, visio motor speed, visio construction, and motor coordination bilaterally. When I read that list, I was like, It's a lot. Wow. And it said, it said right here her current test results suggest moderate cognitive impairments. Um a significant decline from her pre-morbid functioning. Like that's right.

SPEAKER_00 21:30

Confirmed that we're not being dramatic, that the test results show something is wrong cognitively.

SPEAKER_03 21:35

Right. And that's why I afterwards, again, it's it's hard to find the right way to talk to the person who is receiving all of this and having the decline. But it was like it wanted it really, I wish I could have gotten that really across to mom of like, this isn't your fault. You're not just somebody who just has trouble functioning because that would be bad. It's just like you have lost your ability to do that. And It did say like she was in normal limits for receptive language and reading level, which is not like that much in terms of like the weight of it. And that's what I was trying to tell dad is like dad was kind of stuck. I I remember him feeling stuck on like, oh, that show she has some trouble with some reading or some some like some words. And I remember very clearly having to say to him, like the next line of this, which is like, although this may contribute to aspects of this, he kept sorry, dad kept bringing it back to her extremely high levels of anxiety. And he kept saying, This is emotional, this is emotional. And I had to point this out and say, Dad, it says right here in this paperwork, although the emotionality may contribute to aspects of cognitive dysfunction, her cognitive difficulties were more global and more severe than what we might expect from emotional distress alone. And that that was something that again, like one, unfortunately, like one appointment can't tell an entire story, right? So from their perspective, they're like, she needs to go get with the neurologist now. And like there might be different weeks, and depending on what the imaging says, then we might have to go back and do another test. Like they they can't be 100% conclusive, but I think in mom's story, like it was pretty conclusive because what we know happened after this. Um I will also say though, that part that like I remember because we got this less than a couple of weeks after you got back from your trip. And at the very bottom, it does like say some things that she might benefit from. Said it said this. It said she had difficulty with aspects of memory and would likely benefit from having new verbal information written down or printed out.

SPEAKER_01 23:46

Oh my god, oh my God.

SPEAKER_03 23:47

And also says she may benefit from having checklists for day-to-day tasks, schedule book for long-term appointments, and then it also like has suggested like speech therapy, which was important for us to kind of understand at that time as well. So again, we were we we didn't know what we didn't know at that point. Like, even just hearing that, we were like, wow, we're gonna have to think of this differently. But I mean, I remember how I felt when I got that neuropsych evaluation. But I like Amber, do you remember like how you felt reading through it and like the some of the days that followed? Like, how did you kind of process mom's results?

SPEAKER_00 24:25

Um I think it was just more like I, you know, like I'm not saying that dad was gaslighting us by any means, but in in a aspect, it kind of felt like that. Like we'd say, like, no, there's something wrong. He kept saying it's emotional, it's fine, like that tug of war. And so, like, it felt like finally, like we have it listed from the doctors who he'll listen to, that something is wrong. That she has the very minimum moderate cognitive impairment, and like that's something to work off of. And so, like, it kind of felt like a finally we have a ground to stand, a leg to stand on to get her what we need. Yeah, true.

SPEAKER_03 24:59

It's funny though, that even though you say that, it's like even when getting that leg to stand on, felt like for that next month up until we actually got the results from the P the P Tau test, he still didn't get that. Like we would say, Dad, she has moderate cognitive.

SPEAKER_00 25:16

Dude, to this day, he still doesn't get it.

SPEAKER_03 25:19

We would say, mild, mild, like like he would he would just see it how he wanted to see it.

SPEAKER_00 25:26

Yeah, I think for weeks we had to bring up this thing again and and it's like like you said, read out verbatim what the doctor said.

SPEAKER_03 25:34

Yeah, I think I remember like like forwarding it to him for like the third time that much and being like, I remember as you're listening to this, I I don't apologize. It's okay for you to know. But I remember we were having such, I was in the car with him having such an intense discussion about this that I literally just had to turn the volume down. Yeah, I remember that we were coming back from Vermont, and I just had to turn the whole entire volume down and be like, like, I'm gonna look and go off, like mute him, like and just yeah, exactly. But I remember the outcome of that one being like, Dad, I need you to actually read the results, like not just interpret it, not skim it, sit down and read it. And he's very smart. He should be able to sit down and comprehend this. Well, and I do I do feel like after that, like the next morning, like he called me much calmer and was like, Okay, I did read it. I see what you mean. Like, yeah, exactly.

SPEAKER_00 26:33

That was well, and I one other thing I the last thing I wanted to point out from this result was, you know, like you already said, like the doctor concluded moderate cognitive impairment. She said, and flagged a progressive CNS disorder cannot be ruled out. And that like, which leads us to our next like portion of like they wanted again an MRI of the brain. Yep. And I do you remember what a CNS stands for? Central nervous system. That's what it is. So like that could be when we looked it up, that could be Alzheimer's, that could be I don't remember the other ones.

SPEAKER_03 27:03

There was a list of of a few, and it it was different kinds of dementia. And then of course, like there was the idea that like potentially like an MRI would show if like she had a tumor bumping into that part of her brain or something like that. Like we we didn't know.

SPEAKER_00 27:16

Yeah, they basically said, like, from this test, it's moderate cognitive impairment without what can be certain, but we need to get an MRI, we need to get neurologists because something else is cannot like other things cannot be ruled out at this time. So you need to go do those things. So, like that brings us to we got, I think they referred her to the MRI right away.

SPEAKER_03 27:36

So she went and got the MRI, and then it was June 18th. So about two and a half weeks later, that she met and reviewed the MRI with her PCP.

SPEAKER_00 27:46

Um, yeah, because they were reviewing the MRI and the neuro, because they said do both of these, we'll review them together at the next appointment.

SPEAKER_03 27:54

Exactly. And so again, we were not at these appointments, so we are just kind of remembering like what mom and dad said about how the appointments went, and then what the doctors wrote in the follow-up notes. When they reviewed the MRI and the neuropsych evaluation, this is what was written was no significantly alarming findings on the MRI, but we'll have neurology explain more at your upcoming appointment. So again, that makes sense. He's not a neurologist, he's not a brain doctor, right? So, like they're basically went through and were like, no tumors, no tumors, no masses, brain bleeds, no exactly, no, I don't know.

SPEAKER_01 28:33

There's other things with the brain.

SPEAKER_03 28:37

We're not doctors, clearly. There wasn't like a trauma that had happened that was significant there. And so again, like this was kind of like the yo-yo that we were were going on, because it'd be like, okay, this neuropsych evaluation seemed like moderate cognitive impairment, like, can't rule out a central nervous system disorder, something like that. And then it'd be like, oh, well, the MRO is like not that bad. And then mom and dad would kind of be like, see, see, nothing's wrong. See, everything is good. Like, we're just taking this one step at a time. And meanwhile, we're like, you guys are kind of missing what all of this is pointing.

SPEAKER_00 29:13

It's pointing to no obvious cancer, tumors, everything. It doesn't mean it's not Alzheimer's or something else.

SPEAKER_03 29:19

And keep in mind, like for our mom, like she is she was 61 at the time. So yeah, she the this was we kept thinking of that too. It's like she's not going through this in her mid to late 80s, she's she's in her early 60s. So that was kind of all leading up to this uh first appointment with a neurologist that was scheduled to happen at the end of June. Now, what was interesting is that my family was flying out to Denver for a trip in June. And so I was there from the 19th until the 23rd of June. And it was a really quick trip. It was very fast. And I didn't have like any significant encounters with mom that were like massive lapses in judgment or anything.

SPEAKER_00 30:09

There was I did from your trip. Okay, going back from May. Remember, we were trying to find the pavilion because it was like an out we were gonna have like an outdoor birthday party for Oliver. And you asked her like months prior, like, hey, like you're in Arvada, can you go check out some pavilions? Or I think you guys said you you found one, and so she was supposed to go like reserve it or something. Um, and when I get there, she was telling me, like, yeah, like I can't find this place. Like we had like search it, and like I eventually find it, and it was a little hard to find, but like I I remember her, like, I think she was crying because she felt like so sad that she was like, I I looked for it, like I couldn't find it, and like she couldn't figure out how to reserve it online. Like, and that now looking back makes sense. But with it because like oh, she reserved the wrong one, right?

SPEAKER_03 30:54

That was I think that was my fault. That was I don't blame her for that, but like it was a little confusing because there was one that I w wanted to get, and they both have like two different names, but one's like the same name, but yeah, so ultimately was it it ended up being okay, but you're right. There was like a whole confusion over that. And like it was really hard because, like, again, I'm very busy, I have a a busy job, I have a young baby, like life can be a little crazy. I even though I'm very type A in certain ways, like those kind of planning things are not my super chance. Um, just because it more is overwhelming, not because I'm not capable of it. Yeah. So she really wanted to help. She, it was really hard for me to like kind of separate out, like, well, you're going through all of this stuff, and like, but you're saying you want to help me. Like, how much do I let you step in? But then ended up having to like, I don't know, I feel bad. Like, if mom ever listens to this, I'll feel bad because she really wants to help, but she still wants to really be involved. Like nothing really stood out from that trip. Really, she, I mean, she seemed she seemed a little tired. She seemed like in pretty good spirits. Like, I know she was happy to see me. I remember being worried about her. I remember she was telling like one of her good friends that she hadn't seen in like several years that that had come to my our little birthday gathering for Oliver. She was telling her about some of the things that she was experiencing and the testing that she had been having. And that person was like, Oh, I go through the same thing. I have exactly the same stuff going on.

SPEAKER_00 32:23

I write words all the time, too.

SPEAKER_03 32:24

Exactly. And so, you know, that's that's good and also hard and part of the mix. But it was a couple days after I left that she actually met with the neurologist. And that 24 hours was the biggest, I think, whirlwind for us because I mean, do you want to kind of go into like what because I think you're the one who had the conversation with dad and mom about like how the appointment had gone.

SPEAKER_00 32:53

I'm sure I did. I don't really remember. There's been so many appointments between then and and and now. But I, you know, can look at the summary that um the first neurologist. So my mom and dad both went to the neurologist. Um, and that's when they looked over the MRI, they looked over the neuropsych eval, and they took like, you know, just a very, you know, basic neurology appointment. Like, probably went over history.

SPEAKER_03 33:19

Yeah, well, even looking at those notes, it's really interesting. I think it's worth pausing because you kind of start to see like the highest level of like what does he potentially think could be like problem actor? Why do they why does he feel like she's there? And like they they talk about things like rosemary could not be trusted to hold the baby. And we're like, that's not exactly how you know. But that's why we have to go to these appointments now because yeah, and like confusion around changing passwords. Yeah, that's true. Then it says no longer cooking much. I think that's an interesting interpretation, also. Yeah. But then it does have things like she has no issues with like keeping the stove on by mistake or letting the water run too long, which is also true. And then it also said that um she's got a lot of anxiety. The husband reports a lot of anxiety, and then it said, of note, there is great concern around the narrow psych evaluation after the patient was found to have a ninth grade reading level.

SPEAKER_00 34:22

Which we know that came with my dad.

SPEAKER_03 34:24

Yeah, we that's because that that was the one thing that they said it's fine on that chart before we asked him to read it three times. Like that was an understanding was like, okay, so she can't read as well. Like, and then that's what that was the only thing my mom took from that report. Because my dad kept saying it. Which is the well, I don't know if that's I don't I think she probably latched on something that she could understand. She doesn't know what her motor skills are. Like, I don't know if it's because dad made that or if it's because I think it's probably a little bit of both, but it did also say like the image of the MRI, like it appears to be in normal range for her age. So then they left that appointment feeling like, well, nothing's wrong, right? Well, he did the cognitive slums test there, and she got a 17 out of 30.

SPEAKER_00 35:12

17 is like in a cognitive impairment range, right? Yeah, I think it's mild or moderate impairment. But they said he did say here in the summary, like Rose met criteria for mild cognitive impairment, possibly dementia of the Alzheimer's type. And I think that's when they said, like, well, you know, I think it's just mild cognitive impairment, but the FDA did just come out with a blood test called PTAO that will measure the amyloid plaque in the brain. Why don't we just draw some blood while you're here and see what those results are and we can go from there?

SPEAKER_03 35:42

Yeah, and it exactly. Again, these things are so important because you can read through this and still notice different things. Like even now, as I'm looking at this, like right before that part that you said, it says she definitely has enough abnormalities on her cognitive screener and her former formal neuropsych testing to qualify for my cognitive impairment. So exactly. And again, this was on that night after the appointment, because we got the results the next day. Dad and I went at it again on the phone because he was like, he goes, I am 99% sure her results are gonna come back negative. There is, I am sure there is nothing wrong with her. And I said, Dad, kindly, like, how can you say that? I was not just wanting to be again, I don't want to be right about this. And I had to tell her, I don't want to be right about this. I just don't want you to literally think there's nothing wrong when the rest of the picture is right in front of you. Like, I have no attachment to if it comes back positive or negative. I don't want it to, I don't want it to be positive. I just don't want you to be in denial about what's happening. That's the biggest thing. So, okay, so the next morning, the P Tau results came in.

SPEAKER_00 37:03

Yeah. And we briefly went over this in episode one, but we'll kind of dig a little deeper into it now. We get the results much quicker than we thought. It was literally the next morning, 7 a.m. I had to go to work, but I woke up and checking my emails and I saw because by that point, set my we set me and you up as like basically mom would be a dependent on our health, what is it, my health chart or whatever. So that way if she gets test results or messages from the doctor, anything goes to my email because it's just easier for us to get it. Yeah. So it said, Rosemary, you have a test result available. And I knew that was the only test result we were waiting for. So I my heart starts racing and I click on it. And I'll put a um a screenshot up here for anyone watching on YouTube. But for anyone listening, the values for positive were 0.18. Her blood results came back at a 1.11. So, like basically off the chart. And I remember I think it was about eight seconds after finding out that I ran to Felicia's room and like knocked and just opened the door. I I think I said, She has it. And you were like, Like, what? Like you just woke up and I was like, She has it. We just got the results. Yeah. So I think you're like, oh my God. I think you just sat up and just kept saying, Oh my God. And then I handed you my phone, I think.

SPEAKER_03 38:19

Yeah, and then I looked at it and I was shocked by like you see, you know, the the you the visual that you've obviously put out, but like you see the little green, and then you see the rest of the bar, and then you see where she was, and you're just like, and then you just start thinking, like, what does this mean? How am I gonna tell her? What I mean, what does this mean? Yeah.

SPEAKER_00 38:40

Like you it's like a million questions going through your head at once. Like, where do we go from here? Yeah, how is that gonna is that gonna accept it finally?

SPEAKER_03 38:48

And that was the other thing I was so worried about. Is like, again, I have his voice in the back of my head. I am 99% sure it's not all cybers, and here it is. What we were felt was pretty conclusive. No, I will say we didn't know what this test really was. It's not like we spent the whole night being like, okay, let's research this P Tao test and like how effective it is, or anything. And so after we got the results, I think you and I kind of split into two different undefined at that time, like roles where like you started a research, what did that that test really mean? And like, how is there such a thing as like a false positive or any other disease that you can get have if this is positive? And then I kind of like the drawing of talking to mom and dad and telling them about it. And I think in hindsight, again, that was not something we planned.

SPEAKER_00 39:40

We didn't sit down and say, like, hey, you call dad or you tell him like I know I wish I would have been there with you. I think I was in meetings and stuff, and you were like, I called dad. I think you couldn't help yourself.

SPEAKER_03 39:51

You were like, I have to I couldn't help myself. I remember I'm sitting in this exact same chair where I called him from. Like, I had started my work day, and I I couldn't hold it in. I was like, He I have to tell him, like, he has to understand and know. I again, nobody teaches you how to do this. Like, I don't know how much better it would have been if like all of us could have scheduled a meeting and like, okay, like who's gonna check for the results? What should happen once we received those results?

SPEAKER_00 40:20

Should we all yeah, we didn't even think about it? Because they were so like it's not gonna come back with anything. So, like, I don't even think they would have scheduled or had that conversation.

SPEAKER_03 40:29

That we would have thought we would have got it that early in the morning either. I think we thought we had more time to probably figure out what that looked like, and so we were all just kind of doing whatever we thought felt normal in that moment. Um, but yeah, I looking back, I wish I would have had you there too, and like we could have talked to dad together. It was a quick call. Like, I think it was like nine-ish here, and so it would have been like 7 a.m. there. And I just called dad and I was like, it's hard to remember because I didn't write down exactly what happened, and it was obviously so stressful. I think I just said, Hey dad, I have some bad news.

SPEAKER_00 41:05

Or yeah, I have to tell you something.

SPEAKER_03 41:08

And he was like, What? What is it? You know, Amber was able to get the test results already from the the test that determined if she had Alzheimer's. Well, let me pause for a second. They didn't even know what the test results were going to show. Yeah. We said we had talked this. This is gonna come so out of order, and we apologize, listeners, because we're organized sitting down to do this, and then we remember pieces of this as we talk. But coming out of that appointment, we were like, So what's the next step? Like, how were because this was before we read Dr. S's summary ourselves, and they were like, Well, they took some blood work and that's it. And we're like, blood work for what? We're like, what do you mean blood work? Like, they're gonna test her. I'm sorry, I had to look up what the P Tau test was because they didn't even tell her. So when I talked, I remember talking to mom about it that night and saying, like, I was trying to be really calm with her and like being like, So this test is gonna tell you if you have Alzheimer's or not. And she was like, What? Yeah, they can do that.

SPEAKER_00 42:14

She was just told to do take some blood while she was there.

SPEAKER_03 42:17

Her impression was so strong that nothing was wrong with her and that it wasn't even a real option. I don't know. Again, we weren't at the appointment, so we don't know if that was just their interpretation and like revising in the car together, like, oh yeah, it's definitely nothing, or if the doctor genuinely seemed dismissive of it and just was like, we don't know what Dr.

SPEAKER_00 42:38

S said was he would be surprised if it was Alzheimer's, because usually there's people don't have this much emotions with Alzheimer's. Like it's it's atypical. So that's why he was thinking, like, we're gonna test for this because again, like like the neuropsychic test, it can't be ruled out. Like, we want to do every test we can to figure out what this is. But like I think he was surprised, and I think that's probably again, we weren't there, but I that's probably what mom and dad latched on to is oh, it's again, dad hears it's emotional. Dr. S agrees, we'll do this test, you know, to make sure, but it sounds like it's just emotional. We need to get her emotions under control, quote unquote.

SPEAKER_03 43:12

Exactly. So I I remember calling dad and I just said, Dad, look, she has it. She has Alzheimer's this test. And I kind of described the picture to him. I was like, I'll have Amber send you the paperwork. Like I described like how she was at a 1.11 out of 0.0818. 0.818. No. 0.1818. Exactly. So he and he just was like, my God. And I remember like just hearing how sad he was, and like I don't know, he has to tell her. I don't remember if we talked about like how he was gonna tell her. I don't remember if I I literally I think I've I kind of blocked it out. Like I don't I don't believe that like he said, like, well, I'm gonna go talk to her. Now I might have said, like, are you gonna tell her? Like, how are you gonna? Tell her will you guys meet we have a call tonight? Like I remember saying, like, we all need to get on a call together. Cause I think we all did do a FaceTime later that afternoon after work. After work. Um, and like it was clear like mom had been crying all day.

SPEAKER_00 44:16

Oh, yeah. She was still crying when we talked to her later.

SPEAKER_03 44:18

Yeah, exactly. She was she was very emotional, of course. Like, how could and we just told her that? Like, mom, of course you're sad about this. Like, this is devastating. This is the worst nightmare. For all of us, like, we cannot believe this is this has happened. And, you know, there is also a piece of it that we're kind of like, you know, does any part of you feel like at least you have a reason why this has been happening to you? Like, not relieved, that's not the right word, but like, like, stop blaming yourself, like it's a disease. Exactly. Like, you didn't choose for this to happen to you. But that, I mean, that really marked the end of the not knowing. That kind of that's why we wanted to take the time to really walk through everything that led up to this moment. Because, like, from that moment that you get that diagnosis, that's like the end of one chapter and the then the beginning of a brand new chapter, which is another what the rest of this podcast is going to be about, right? Because it's like, what happens once you know? Like, we've learned so much about like brain health and how does one what contributes to cognitive decline and what are our chances of getting this same disease. And like, we have had to sit with so many pieces that we never could have prepared ourselves for in all of the months leading up to this, or that we didn't know to prepare ourselves for.

SPEAKER_00 45:35

Yeah. Yeah, it's uh it's a lot, but I'm excited to now that we've gotten to this point to kind of go over more episodes about where she is now, because it's been a year, um, and a lot more of like the educational pieces that we've found.

SPEAKER_03 45:48

And yeah, I will say, and we'll go into this in more detail, but I will say, like, there are like as devastating as that diagnosis was, there are positive things that came from that diagnosis. Because as you've heard us talk about like several trips that we've experienced of her coming back here to visit us, the next time that she came back, once she had that diagnosis, I will say she was much better. Like she we were able to interact with her differently. She was able to anticipate things differently. And like, I really think like what really changed afterwards is like she didn't have to mask as much.

SPEAKER_00 46:24

Yeah. She knew something was wrong and we just adapted. And we also weren't as frustrated because when you don't know why somebody's acting that way, of course you're gonna feel frustrated. You're like, you know how somebody usually acts and they're not acting that way or not showing up the way you think they were or are supposed to. But like now it's it's not a big deal. It's like she has Alzheimer's. Like we just like, oh yeah, I'll answer your question three times. Like, I'm not frustrated by that. It's a disease, right?

SPEAKER_03 46:48

And it's funny, Amber, because like I think back to like that training spaces exercise of like keep, throw away, donate, right? Like now, if we if we were to do that, like then that was a very normal activity. You put this in this bucket, you put this in this bucket. Now, if we did it, we'd just be like, okay, what's the trash? And like you just focus on that one thing because you don't have that ability to hold space for two.

SPEAKER_00 47:12

Yeah, exactly. So, like everything that we or even when we, and we'll probably talk about this in a later episode, like when we planned our trip for Disney World for January of this year, like we discussed like how how do we plan for breaks for mom? Like, how do we make things, you know, with Alzheimer's like sensory, like things get just more disoriented than your like a typical cognitive brain would work. And Disney Worlds is a very loud and stimulatable environment. Yes, very stimulating. So we had a lot of leading up to that like what is that gonna look like? How's mom gonna react? Do we need to have a plan for like the fireworks? Like, I'm gonna take her back to the hotel because you know it's getting late and she wants, you know, needs to go to bed early. Like, there's a lot that even went into like simple things like that that like it takes over your life.

SPEAKER_03 47:56

It's changed how we interpret and how we approach every single day. So, yes, again, thank you guys for joining us for today. Sorry for some of the ups and downs of winding and unwinding this story, but we really appreciate sharing it with you. And we are grateful to hopefully have this community and this platform that people are realizing that like they're not alone in their own experiences of this, and also just like some of the complications that it's very normal to go through because you're you're navigating an area that you had no training on, no planning, like you you're doing the best you can.

SPEAKER_00 48:32

Yeah. Thank you very much, and we'll talk to you next week. Bye-bye. Bye-bye. If this episode resonated with you, or if someone you love is navigating an Alzheimer's diagnosis, please know you don't have to find it alone. The Alzheimer's Association is a free 24 7 resource available to anyone who needs their support. Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next. You can reach them anytime at 1 800 272 3900. You can also reach them online at alz.org.