Allan: Tens of millions of families with Alzheimer's disease and dementia all over the world, including our family. We are Alz In The Fam. I'm Allan Fair.
Poli: And I'm Poli Fair Noyes. We're siblings, we’re parents, but we're also care givers.
Allan: This is our podcast. This is our support group. Welcome to our family. Alzheimer's sucks, but this family lives, laughs and learns as we fight for a cure. Welcome to Alz In The Fam.
So in this episode, we're gonna talk about early warning signs of Alzheimer's and dementia, how we noticed them in our mother and our journey to realizing that we needed to do something about it. One of our go to resource is, and one of the first things that anyone will find when they start googling and learning more about Alzheimer's is, you will find the Alzheimer's Association's website, which is alz.org. And so, we're going to use one of the first articles that you'll encounter on their website, which is ‘10 early signs and symptoms of Alzheimer's and dementia’. So, they list 10 things. Poli and I are going to cover a handful of those in this episode.
Poli: I remember this is one of the first places we went when we started seeing things going on with Mom, and we thought, could it be out Alzheimer's? Well, turns out…
Allan: Right, right.
Poli: Great resource for us.
Allan: Absolutely. Um, and I think what we found in our journey and with others who have gone through a similar situation is that it's very hard to take the leap and actually say, “Hey, Mom, Dad, Grandma, I'm noticing some memory loss and we need to go to the doctor”. That's a really difficult journey to begin, because I think what we found is, if you're the parent or the grandparent, you don't want to do anything that's gonna lose your independence, the matriarchs and patriarchs of the family. They don't generally say, “Hey, I need some help here”, and the kids don't really want to do that either. It's a very difficult journey to begin on both sides. However, um, the earlier you can begin that journey, the more you potentially position yourself to get ahead of a medical event that then just forces the journey. Whether you like it or not.
Poli: Yeah, I'll never regret starting earlier on helping Mom with Alzheimer's. In fact, I wish we had maybe done something sooner. There are medications that can mitigate some of the things, but also you can set up plans, programs. There are resources that can help you. So, I think it's important to talk about the early signs. You might not see all 10 of them, the Alzheimer's Association lists 10, but a few of them together really will point you in the direction of “wow, this really might be dementia, specifically Alzheimer's dementia or whatever kind”.
Allan: So let's talk about some that we saw in our mother in the early phases, which began a little over 10 years ago. Why don’t you lead us off Poli.
Poli: Yes, so the 1st one on the Alzheimer's Association's 10 early warning signs and symptoms is ‘Memory loss that disrupts daily life’. And so, this is different than you know, I might run upstairs to get something, get up there and think, “what did I come up here for”? This is different. So, with Mom, one of the first things I saw was she has a friend that she would go to lunch with once a month or so. They used to work together, and they would meet at their favorite pizza place that my mom had been driving, too, for a good 10-15 years, once a month. And she called me. Luckily, by this point, she had a cell phone.
Allan: Is this Gentleman Jim’s pizza?
Poli: It is Gentleman Jim’s yeah.
Allan: Heck yeah. If you live in Maryland and you don’t know Gentleman Jim’s, get yourself some.
Poli: Yeah, it's a unique, wonderful pizza experience. Anyway, she called me, and she was lost. She gone to meet Cheryl, but on the way back she made a wrong turn, and she had no idea where she was. This was back in the day before you had a GPS in your phone. She called me. Luckily, I was able to help her by asking, “Well, can you read any signs? Can you tell me what you're near?”, and she was near where Gentleman Jim's is. You could easily travel at that time two miles away and be kind of out in the country with not many businesses around that might help you, point you in the right direction. So, we got her home by looking on Google maps, probably something like that. And ah, that was a big first sign of disrupting daily life with her memory loss. She didn't remember how to get home anymore. Another one could be, she couldn't really remember to pay bills, what day the trash came to drag the trash cans down to the curb; that kind of thing.
Allan: Sure. Well, one that really leaps out to me is the 4th one that this article lists on alz.org: ‘Confusion with time or place’. And this reminds… I call this the Giant versus Safeway story. So, where we grew up in the town of Olney, Maryland, there are two huge grocery store chains, Giant and Safeway, and they’re right next door to each other. I spent my entire childhood with Mom being fiercely loyal to Giant, and she would, weekly espouse her extol, her praise for Giant and how much she didn't like Safeway. And I think at one point, maybe in the seventies she was loyal to Safeway, and then Giant won her over and she never, ever looked back. So, I spent my whole life going to Giant with Mom every single week, and Giant was her grocery store brand.
Poli: Right, and she would literally drive past the other grocery store to get to Giant. So, it wasn't a convenience thing at all.
Allan: She would drive that extra 500 feet, to go. Olney was a pretty small town back then. So then fast forward to about 10 years ago and Mom is talking about her brand loyalty to the local grocery store, only she's talking about Safeway and how much she loves Safeway. And I think all of us were there. This must have been a family gathering or something like that.
Poli: Oh, no, because we all had the same experience as you where we had to go to Giant all the time. And here was Mom suddenly claiming she'd only ever gone to the Safeway, which was newer. It wasn't even there, right, when we were younger, and we were shocked. And she was adamant about her loyalty to that and would not hear it if we said no, it used to be another way.
Allan: Right. So, I said, “Mom, no, you mean Giant was the one that we always went to”. And she said “no, Safeway was the one”. And I said “no, Mom, if you're going down, what is that 108? Georgia Avenue? So, if you're going down George Avenue, you're talking about Giant, the one that comes right after Safeway”. And she said “no, Safeway. The one that comes before” and is adamant. So, we're also locking in on, we're both talking about the specific location of the stores and she swears you know, the same thing: “I would never take you to Giant. It was always Safeway” you know and ‘No, you mean everything you're saying is correct, except you mean it the other way around”. And there was no, there was no digging in and all of us went around to clarify. And no, she meant Safeway. Yes, that Safeway. And yes, that was the store that she took us every time. So that was one of those, that incident alone was just more like, “well, that was kind of weird”, But…
Poli: Imagine how hard it must have been for her. I think about this now that all the people she loved and trusted were like Mom, you're misremembering. But she was so sure of her own memories at this point that she could not, she just could not change. She could not let anyone change her mind. It must have been all four of her children being wrong; couldn't have been her.
Allan: Which other ones leap out to you on this list?
Poli: So, ‘Difficulty completing familiar tasks’ is one that really started kind of early. So, I would go to her house to visit her and see bills laying on her kitchen table that she's like “Oh, yeah, I have to pay those”, and she'd have her checkbook out, maybe. And then 2-3 days later, I go, and they'd be still there, and then I'd see a second notice come in. And this is someone who had been paying her own bills for, I don't know, 30-40 years. So, I kind of just took over the bills. Every time I went over there, I would take the bills off the kitchen table and bring them back to my house and pay them for her. Another thing - she was still driving at the time, and still I would drive with her. She was driving well, but she would go and buy groceries, maybe that she already had. And one time in particular I remember, I went with her, got in her car, and it smelled kind of funny in her car. And we get to the grocery store, we buy her standard stuff and come back to the car to put the groceries in the back seat and there's the grocery she'd bought, I don't know, 2-3 days before. It was very hot in the summer and she said, “no, those groceries are fine. I just bought them”. Um, just a constant. She just couldn't do that familiar thing of buying groceries, making a plan, having a list. She just bought things over and over. We had lots of Costco supplies in the basement. More than any single person living alone could use in their lifetime really.
Allan: It makes you start to understand and appreciate. You, every now and then, you hear horrible story about how someone leaves a child or in the car. They just simply forget that they're in there, you know. “Oh, my goodness, how can that happen”? And in a lot of cases, these aren't bad people, they’re people who maybe have early onset dementia or other things.
Poli: Oh, absolutely. I mean, I think that's a real concern. I think Bonnie had a story too about completing familiar tasks; this is our younger sister. She had left my mom to watch her kids, and this is before we realized that the problem was dementia not something else and was giving the wrong dose of just a fever reducing medication. Mom just didn't remember or wasn't able to complete that familiar task, but she done for my kids with no problem. And so again, yeah. Another one that stands out is ‘Misplacing and losing things’ and ‘Not having the ability to retrace your steps’. Mom, as a 70 some year-old woman at this point always had her purse with her, but she started losing her purse a lot in her own home. So, she had this thing where she became afraid, maybe somebody was going to come and take her purse so she would hide it in the closet, or she would hide it in underneath the table. But then the only person it's really being hidden from was her, and eventually we installed some security cameras in her house to try and calm our fears. But we could see that she was hiding her purse, walking away and then coming back and not able to find it.
Allan: Wow, so one that leaps out to me, another one that leaps out to me is ‘Changes in mood and personality’. So, this was probably when my oldest son, Marko, was two. Old, old enough to be walking, but very much a toddler. I had my old high school friend over, Song and his wife, Hannah were visiting me at my mother's house and my mom was there. And so, Song, he was one of my best friends in high school, and my mom absolutely knows, remembers Song even to this day. I don't think I mentioned his name, too in quite a while, but she would probably have a memory of him, and at minimum, know that this is one of my best friends. So, Song and his wife, Hannah, are with me at my mom's house, along with my toddler son, Marko and I was upstairs with my mom, and Song and Hannah were downstairs in the family room with Marko. And at one point they came up with Marko, and I guess there had been this pink tutu down there, was probably your daughter Alex's some point, and they had put this little costume pink tutu on Marko. So, they came up to show “Look how funny. Look how cute”, and this was unbelievably upsetting to Mom. She said, “Oh my goodness, Take that off of him”, and literally got up, went over and pulled this tutu off of him. And it was so alarming because, 1. we're not a family that cares if a boy dresses up like a girl or this or that, especially, and it's a toddler. So even if we did it shouldn't have set anything off. So it was odd, and in that sense we didn't understand what that was.
Poli: I think this speaks to, at that time, she suddenly became more anxious and fearful, and that sounds like an anxiety response to her about things she didn't think she could control. And obviously completely out of character for her and also just ridiculous. But there are a lot of ridiculous things that seemed ridiculous and now, we realized, were part of her. It was a personality change. So, she became afraid often when it was getting dark. Twilighting, I think it's called where she would, the house she lived in forever, a neighbor she knew forever, suddenly she was afraid of. She would go out for a walk, come back and go, “I think there's someone in my house”, and there are many nights for a while there that I would hop in my car and drive as fast as I could to get her. And she would be shaking, just shaking, crying. Remember that period? Sad.
Allan: It was a period of many, many years that.
Poli: Yeah, I mean, we tried so hard to get her to move in with one of us to kind of calm her anxiety. We thought that would help. And she wouldn't do it because the truth is, maybe she even realized nothing was gonna calm that anxiety. She just couldn't control or understand when things were actually a big issue, a big thing to be anxious about.
Allan: Just to close the loop on this ‘changes in mood and personality’, and the story of her dramatically ripping off this tutu, I said to her later on “Mom, that was kind of rude and embarrassing the way you behaved in in front of my friends”. And she said, “What are you talking about”? I said “when Song was here yesterday”, she was like “Song? I haven't seen Song since you were in high school. I haven’t seen Song in 10 years”. I was like “No, mom. He was just here with his wife and she said, “Songs married”? So not only did she have any recollection of this tutu incident, she didn't have any recollection of these people being in her house, which is another one. And of course, from Song and Hannah's perspective, they were like “geez, what was up with your mom”? And so whenever, when I saw them again months later and said, “it's craziest thing she doesn't even remember”. They were kind of like, “Wow”, and you could see their empathy and appreciation for that. That kind of a situation.
Poli: Should we mention at this time our mom didn't really look old or like a picture you might have seen of a person with dementia. She has no gray hair or at least was coloring it to the point where she didn't. She was young, and she appeared young and fit and was. So, it was hard to explain some of her behavior away. And I wonder if you felt at the time which thing that I felt, which is if your mom doesn't remember it and she thinks you're wrong, I really questioned myself a lot of times in those situations. And this is sort of a segway to another thing. But did you feel that, like, “wait, was he there? Was she there? Am I remembering correctly”? I mean, I know that's a very specific instance and you know what happened. I really had some trouble because she's my mom, right?
Allan: Sure. I think I would think that way. Now, out of now that I know exactly what it is and now that we ourselves are genetically predisposed to it, I'd be thinking, “Oh, wait. Am I the one who's not remembering this”? But I think back then it was just so clear that it was a fact. However, the emotion that you feel is more, a little bit of anger and resentment because it was this embarrassing incident in front of your friends.
Poli: A good friend, right. Yeah. I mean, long time, friend who Mom loved.
Allan: Yeah, yeah, yeah, this is a good friend. And so, you hate too, when you make new memories with old friends, you want them to all be positive and good memories. So, this is definitely a story that even though this incident happened easily, you know, 7-8 years ago, I'm sure that they remember it well.
Poli: Yeah. So, another thing, number five with on the Alzheimer's Association list is ‘Trouble understanding visual images and spatial relationships’. And this kind of speaks to me feeling like, you know, Mom's in charge, she's my mom. And one time, Mom and I went for a walk and we brought Alex with us, my oldest daughter, and we were waiting to cross the street. And so, I live in more of a city than our Mom at the time was living in and we're waiting to cross the street and Mom got very impatient. She really became impatient driving, and this is around the time we decided to take her car keys away. But she was like, “come on, let's cross the street”. And she was constantly encouraging my daughter, who had grown up in a city and knew how to cross the street, to just run across the street, that there was time to do that… that there weren't cars coming. And it was really a problem because my daughter was like, “well, Grandma, she's in charge. She knows what's going on”, and I was like, “don't follow her into the street”. I mean, I realized our mom definitely had trouble with spatial relationship. She could not tell how far away a car is, and I didn't realize it at the time that it was a part of Alzheimer’s until I read it in the Alzheimer's Association list of 10 things.
Allan: Wow, how scary. I think I've heard this story before, but when you're with your children who were young, if you see an adult moving as a kid, your instinct is therefore
- it must be safe, I’m going to start walking too.
Poli: Yeah, and this is Mom who was always the most protective of our kids, of my daughter, and had taken care of her when she was younger and helped her cross the street correctly. And you know, when our kids were young, we said “you wait for the light to change”, and Mom didn't even remember. There's no symbols or signals for walking out where she lives in Olney or was in Olney. Whereas here, it's a city and you wait for the light to change or you might get hit by a car. And it was difficult for my daughter, because when Grandma tells you to do something, you do it. She loves you and she takes care of you. No, I mean, so I think that's one that you didn't really realize at the time. But now we know that was part of that Alzheimer's.
Allan: Right. That reminds me, I'm sure this maps to one of the things on the on the list. Maybe it's ‘Decreased or poor judgement’, which is one of them. So, we'll map the story I'm about to tell to that one. But I remember when my son Marko was born, she was still well enough very, very early on maybe when he was still a baby, where I would leave him with her for a couple hours. And you had paid a visit while I had been out and you observed that Mom just simply could not handle the assembly of the types of bottles we were using, right? It had, you know, the complexity of bottles these days, cause they’re less gassy or whatever it might be. So, this bottle had, like, five pieces to it around the top area. And mom was just kind of like, screw this and kind of adapting her own way of doing it, which, frankly, was probably fine in terms of his overall health. But the fact that she couldn't do it was alarming to both of us. And you thought enough so where you called me to make clear that you had observed that and that I needed to rethink leaving him alone with her because when it comes to babies, there are very specific things or fortunate. Some of our nieces and nephews have celiac disease and other things. I think between my two kids and your two kids, they're generally allergy free, but could you imagine if there had been allergy and discovering it the hard way? And in that sense, it's hard. And that was another thing that was hard for me is another realization that I'm the youngest of the siblings. My grandchildren came later, and it's like, “oh, man, yeah, ever all the other kids had such a wonderful experience with Grandma”, and I felt at the time that my kids were being cheated in some way because I didn't yet understand that this is the onset of Alzheimer's disease. So, I felt more hurt by it than anything else.
Poli: Yeah. Another thing that happened with Mom was she really had trouble with sort of complex situations, but it wasn't complex like, I don't know, changing the oil in your car. It was complex, like putting a baby bottle together. Also, she was always the one who would host big family dinners, and we had started taking over that on our own. But Mom would always come to my house on Christmas Eve and have our big Christmas Eve celebration. And one year, probably around the time your kids were babies, she just said after dinner was prepared… she'd helped the whole time, and we were going to sit down to dinner. She said, I'm just going to go home. And I was like “What are you doing? You got to stay for dinner”, and this is the best part. She's like, “no”, she really couldn't handle large groups anymore. Especially some of my husband's, you know, children or nephews were there. Not children. He only has children with me.
Allan: Thank you for clarifying.
Poli: Yeah, just thank you. You're welcome. But anyway, we called her an uber to go home because she just she couldn't take it anymore, it was too much.
Allan: I remember that. Yeah. So, what's interesting about this list - there were 10. I'm not exactly sure how many we covered, but there's at least one in here that even to this day isn't really applicable to our mother. So, I would say If you're noticing signs and you only see two or three, don't ignore it. I don't think that you have to hit all 10 of these because, for example, number six in this article is ‘New problems with words in speaking or writing’. From the speaking standpoint, we don't really notice that even now.
Poli: With Mom, even now, she can speak well. She doesn't have the opportunity to write, so I don't know that, but she can read and understand a simple sign like, you know, this is the bathroom go here, but we haven't seen that. And I think that, I don't know what the Alzheimer's Association says, but what I find is that you don't have to have all 10 to have Alzheimer's. You might only have three, and the memory in our case was the biggest number one red flag. And then we looked at the other things and saw “oh, yeah, I guess that has happened to”, but they fade slowly. The changes in being able to plan a big family meal you might contribute, you might attribute that to age, right? Just getting older, more tired, less stamina maybe, and that could be part of it. But now, I realize that she has a lot of stamina. She can walk miles but couldn't possibly have the mental stamina to plan an event.
Allan: Right. Now, the purpose of our podcast is just to share stories, form a support group, let people know that they're not alone in it. So, while you shouldn't take this advice as advice from professionals other than we've lived through that. If you're noticing any of these symptoms in your loved ones your parents, your grandparents, and don't see them proactively speaking about it or giving any indication that they're seeking medical help, it's probably a good idea for you to be the driver and take them to their doctor and begin that journey or to talk to a physician to get that started.
Poli: Yeah, I think absolutely. I recommend if you've got family, get them together, start having a plan, “I'm seeing these signs in mom or Dad. What should we do? Do we have our paperwork in order? Can they continue to live alone? Can they continue to drive? How fast is this moving”?
Allan: Sure, yeah maybe that's even a good preliminary step is if there are other vested loved ones, whether siblings or other, you know, just other family members or loved ones, too. Gather those people and say “hey, I'm observing some memory loss. I'm observing that Mom or Dad is having confusion with the time or place” and see where there's consensus and where there is a lack of consensus and build a plan from there. It's such a lonely journey as a caregiver that the more you can enlist with loved ones that have a vested interest really makes a big difference.
Poli: You do want to reach out to the other people in your family because someone said this to me, a friend who watched her mom go through this: “today is the best it's ever going to be since there's no cure for Alzheimer's yet. It's today. It's not going to get easier tomorrow. It's not going to change tomorrow for the better. Every day that you have with them is the best it's ever going to be”. So, start planning and start while preparing.
Allan: Just begin the journey.
Poli: Yeah, don't be afraid of the diagnosis, I think, because the more you know and the more you can reach out and find other people who have ideas. We learned so much from, I learned so much from other friends who had parents that were afflicted with Alzheimer’s.
Allan: Of course. Well, why don't we end the episode with thanking the Alzheimer's Association, where Alz In The Fam is an active member and contributor to them. We appreciate what they do. Check them out as well. We’re Alz In The Fam. Thanks.
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