Episode 6: Alzheimer's - Troubling Signs and Behaviors

Transcript for Episode 6 of Alz In The Fam.

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 caregivers.

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.  Welcome to Alz In The Fam. Alan here with the original loves of my life. My three sisters Poli, Boni and Trisi. How you doing, ladies?

Boni: Morning.

Allan: I still want to say guys as this pronoun, which, you know I have… there's so much to unlearn. But I almost said ‘What's up, guys’? And then lady sounds weird too. What's up my sister's? What's up team?

Trissi: Siblings.

Allan: Hello, sibs. Yeah. Trissi:  I say guys all the time.

Boni: Yeah, ‘you guys’ is the plural, I think.

Allan:  Yeah, hopefully maybe that one could be okay, because I don't mean I would like to see you as dudes or anything but moving on.

Trissi: I identify as she/her.

Poli:  Okay, good to know.

Allan:  Yes, he/him. So today welcome to Alz In The Fam. Today we're going to talk about increasingly troubling signs and behaviors that we saw in our mom, Carmen in the early phases of her dementia. So, she was diagnosed in 2013. We started noticing troubling signs in 2010. So, we're somewhere in the earlier part of these years. And today we're going to talk about the progression of troubling behaviors and increasing concerns that we started having as our mom continued to live alone. So, all of us went to school, graduated from college and generally speaking, moved out of the house in which we grew up in. So, our mother continued to live in this five-bedroom house in which we grew up. And at this point, she's probably in her late sixties and early seventies and has lived there alone for a few years now. And this wasn't an all it once thing, right. We tried for a long time to convince her to move closer to us or move in with one of us. But our mom, wow. Carmen was stubborn as stubborn, right? She didn't want to do that. And she was adamant about wanting to stay in this old five-bedroom house. So, this is the story of how we managed that early period where we knew something wasn't quite right and this house was proving to be a problem and what we did about it. So why don't we start out with your perspective, Poli?

Poli:  Yeah. So, you're right. Mom wasn't just stubborn. She was feisty and independent, and she really wanted to keep her independence at a time when, well, first little things happened. I'll just start with that. She did like bizarre things. She started unplugging everything. So, the TV set she’d unplug, microwave, the coffee maker, the cable box for the TV, everything. Then she turned off everything. She started. Lightbulbs would go out; she wouldn't replace those. Just weird stuff. I’m like, “why are you unplugging everything”? And she's like “aw they use electricity”, which I guess she's right. But every time she unplugged the cable box, then she'd plug it back in to watch TV and no TV. That was troubling. Um, she was wearing weird clothes. She found some of Allan’s old warm up sweatpants from high school. At this point, they were probably I don't know how many years old. 10 years old.

Allan: I graduated high school in 93 and we're talking circa 2010 through 2013. So yeah, we got two decades of crustiness. I'm glad that she never wore my old wrestling single it because that would have been a lot to deal with.

Poli: I found that one.

Boni: She did have Trissi’s. That was Trissi’s Chi Chi’s shirt, but that was before she had any issues. She liked that.

Poli: When Trissi was a waitress at Chi Chi’s and she had a special shirt. That's so funny. Yeah, so she would. I go see her and I'd be like, “Where'd you get those little boy or young man sweatpants”? And she'd be like, “What”? You know, just wearing weird clothes. But it was nothing dangerous. I mean, she had everything covered. You know, little things. She didn't take the trash out. She probably should have.

Allan: So how about, what about you Boni? What do you remember about this time?

Boni:  I just want to announce that I wear my high schooler’s sweatpants when it's cold out. They’re very comfy and broken in. So, there you go. I'm more like my mother then I like to admit. So some of things that I noticed were that, you know, she would tell us she went on a walk and then, you know, two hours later she was on walk again. At this point, she always had her phone with her, so that was fine. But it was a lot of walking, like a lot. She wouldn't remember that she had gone in the morning and we started worrying a little bit about dehydration. But, you know, she's always been an exerciser. She did Jazzercise or yoga when we were younger, so we knew it was important to her so it was concerning something you've kind of filed in the back your head that didn't get overly concerned about. She was really ruled by the calendar at that point. And I think one of the things with our mom overall is that she accommodated herself pretty well. So, you know, she knew that on her calendar on Thursdays she would go to the Hair Cuttery. On this day she went to take the trash out like you were saying and if it wasn't on the calendar, she didn't go or she would go twice. So, there was that piece and then just the continuance of “Oh, I haven't seen anyone in so long”. And I would then hang up and say, “Didn't you go see Mom yesterday” and Poli would say or Trissi would say or you would say “Yes. You know, I went to see her yesterday. I fed her”. And just sort of that. Finding old food around, things like that that were not terrible and really not that far out of line with who she is, but just different.

Allan:  Sure. How about you, Trissi? What do you remember?

Trissi: I remember going into her house and seeing little sticky notes all over the kitchen, and they would have unusual quotes on them. And it was just something she had never done before. And I thought that was so interesting. And some of them were great quotes, but it was a very new, different behavior, and they would kind of be stuck in unusual places. And it was just something completely, new, like I said.

Allan: Yeah, I remember I'd visit when the kids were really young. Maybe even before my daughter Ava was born, we'd go visit and she would say the same things over and over again. I mean, I'm visiting from New York. I don't need to sit in my old childhood home and eat there, you know. I'll take my mom out to lunch and get her anything she wants and pay the bill and say, “Thanks for everything you you've done”. But she would say, “Allan, I don't have that much here in the house to feed you and the kids. I've got frozen chicken and frozen popsicles because I live all alone”. I’d say “yeah, I know. Mom will go eat in town”. “Yeah, well, Allan, you guys must be hungry, and I can't. I don't have much to feed you because I live alone. So, I go to Costco and I buy this chicken that I freeze and I have some coconut popsicles. Why don't you have a coconut popsicle”? Im like, “As discussed, I came here to take you to lunch”. And the same thing over and over again. And that was this running theme for years: “I don't have much food. Here's the frozen food that I do have because I live alone, you see”? And yes. Yes, I see. So, definitely just little troubling signs. So at first, the three of you, I have always lived in New York throughout this process. But at first, all of you were kind of on a schedule where each of you would take turns driving out to check on Mom. Maybe at first it wasn't every single day. So, let's talk about what made us realize we needed to visit her more and provide more care on a regular basis. What were some of those moments?

Poli:  So we were doing once a week, right. So I would go, Boni would go once a week, Trissi would go once a week. Just acknowledging it was a lot further of a drive from Boni and Trissi’s to get all the way out to Mom's house. I was closer. I think I ended up going 2 to 3 times a week, and eventually it became: somebody had to get out there every day. And some of the things I noticed were she would turn off her furnace. She was always messing with any gadgets. And so, it would be, say, Washington D C. area summers, the DMV summers are typically 95 degrees hot and humid, chance of afternoon thundershowers. Inside her house, it would be 100 degrees or at least 95, humid as could be, if she didn't turn on her air conditioner. So, she's like, “Oh, my air conditioner doesn't work anyway. I just have a fan in my room”. I’d be like “Mom. You can't do that”. But, worried about her. I think it's difficult to live that way anyway. But one of the things I saw was she would take like a steak. Se would buy these frozen steaks at the store and have it in the freezer. And then she would put it on the counter to defrost, and I would come and see her, and I'd be like, “Mom, it's so hot in your house. Why did you turn the air conditioning off”? I had just turned it on the day before. She’d be like, “Oh, it's fine. I'm fine”. Really worried about dehydration at this point. But there’d be this piece of meat sitting on the counter defrosting and it would be room temperature, which was, at that point 90-95 degrees. And I'd be like, “What's this”? She’d be like, “I'm going to have that for dinner”. I'm like, “Let's go out. Let's go out to lunch right now”, and she'd be like, “OK, I'll just put this back in the fridge or the freezer”. And I was like, how many times has she done that that we didn't know? So that was a real concern. Another concern was, you know, she wasn't doing laundry. There was no evidence she was getting laundry done. She didn't really smell that great. She, I found dishwasher detergent in her bathroom. She was, I was like, “What are you doing with this”? She's like, “Oh, I just wash things with it”. She thought it was like for her hands. She did at this time have a very itchy rash on her forearms. I suspect she was using that so and she just wasn't I mean, you have to understand our mom. When I talked about her wearing Allan’s sweatpants, maybe it was the culture of her time, but she was usually dressed to the nines. She got up, she got dressed. She put on clothes that were hers, that fit well, that looked nice, that were clean. And it just fell apart. That's all.

Allan:  If you look at all of our newborn baby photos, you see all of us hours old, and there she is, holding us in the hospital, and her hair looks impeccable and immaculate. And we're like, “How do you look that good after just giving birth”? And she's like, “Oh, my God, I had someone come and do my hair. That’s what you did back then”.

Boni: Yeah, she went into labor and she went to get her hair done. That that was her.

Poli:  She had a special leaving the hospital outfit.

Boni: Yes.

Poli: Yeah so, I don't know. Bon. You and Trissi definitely saw things. Boni, why don't you tell us what you saw?

Boni: So for me, you know, one of things about… There are two things here. So, the first thing is that we started being guided a little bit by the medical professionals who were telling us, you know, more and what they felt she could do and when we needed to intervene a little bit more. So that's a piece. You know, we started getting outside guidance versus just each other. Some things that really started concerning me was realizing that Mom was operating solely off of her calendar in her watch. So, if she did not eat or notice between the hours of 11 and two, then she assumed that she had already eaten and wouldn't. And so, she lost some weight at that time. So, I would go over at, let's say, 11. And I would say, “Oh, you know, you want to grab something to eat”? And she would say,” Oh, no”, she would look at her watch first and then say, “No, I'm not hungry yet”. Or if it was two o'clock, she would look at her watch and say, “I already had lunch”. And you could tell you that there was evidence that she had not eaten, but she was eating based on the time. I eat a really big lunch and I eat it at 1:30. And so if it was three o'clock, she assumed that she had eaten it and would not want to go out again. So, we started timing it. And then the other piece at this point was we started realizing we needed to monitor medications. So, we would have to go and literally count her pills. Is she taking them? We would have to leave her notes that said, you know, you take this one in the morning and this one in the afternoon, and then we got her the pill case, but there was more and more management that needed to be done. She doesn't like to take medications. And she did have that. You know, she still says all the time. If you ask her outside of her facility. You know, “I live alone”, very prideful with that. So, you know, doing all this and trying to keep her in her home was our way of honoring what she what she wanted at that time. And, you know, we were trying to really give her that piece of dignity that she wanted. So that was it. And then Poli and Trissi, you remember? You would go into her cabinet and we would find these weird medications where she was, you know, who knew how long she was taking them? Dietary supplements, all kinds of things. So, we had no way of knowing what else she was doing to herself that might affect her health.

Poli:  Yeah, she was taking an like an anti-cholinergic, I think that the way you pronounce, it that she was not supposed to take. So, you're not supposed to give older people Benadryl because it can cause some mental confusion and even hallucinations, so… We would find Benadryl in there.

Allan: Wow. How about you Trissi?

Trissi: For me, I remember a lot about her driving. She was kind of an, I don't want to say an aggressive driver, but, you know, she drove a lot and she would, get very annoyed if someone was driving too slowly. And, you know, she was a good driver, and I really wanted her to keep driving. And the one place that she drove to the most, of course, was Poli’s house because that was the closest. And she never liked to drive on the Beltway. So as good of a driver as she was for the driveway or for the highway where we live, meaning 495 The Capital Beltway. Right in Montgomery County, where we live, it's the scariest part. So, there are a lot of people that we know that do not like driving on the Beltway. So that was always her thing. But she knew how to drive to Poli’s house, and I desperately wanted her to keep doing that because it made my life so much easier, so it was a selfish thing, but I could tell she was becoming more and more hesitant to do that. And then I knew from Poli that she had called her a few times and just admitted that she was lost, which just even imagining that. I remember Poli telling me I was like, wow for Mom to, you know, have to call and, you know, kind of admit that she was lost somewhere. That must have been so hard for her, and she must have been so scared. But again for me, I just wanted her to at least be able to keep driving to Poli’s house. If she could just go there, that would be so great. So, I remember I was taking her to see Chloe in a play, and Chloe was in eighth grade, so this was in 2014. And, it was just going to make my life so much easier if she could go to Poli’s and I could pick her up there and take her to Virginia to see Chloe. And I knew she hadn't done it in a while. And I knew that Poli and Boni were growing increasingly uncomfortable with her doing that, but I just really wanted her to do it that day. And she did, but that was the last time. Like I knew it took a lot out of her. I knew she, you know, I sensed when I got there, that she was really stressed, and that was it. I just knew that those days were over, and it was It was hard. It was sad.

Allan: Yeah. You see the amount of effort and how hard they had to try and probably felt the sense of pressure that we were putting on her too, you know, and was aware of that, and just probably a real struggle for her, for her to do that. And, gosh, just could you imagine being in the middle of driving and not remember why you're driving or where you're going. I mean, just how scary and awful. And then to know that, that was our mom that was going through that. It's just such an awful disease. So, what I, what really crystallized it for me was her relationship with drinking alcohol changed. Our father wrestled with alcoholism his whole life, and they separated in the early eighties. So, our mom really didn't drink much at all I think largely as a result of that experience with our dad, her husband. And so, my only memory of her ever really drinking was if she was having trouble sleeping from time to time, she'd buy Mad Dog 2020 and just have this little bottle of it, which is so disgusting. But I think she was so uneducated about it, that part of our father struggles was he would not only drink a lot, but drink really, really cheap, inexpensive alcohol. So Mad Dog was probably, she probably didn't know that there was something she could get that tastes better and, you know, maybe have less sugar in it and so forth. But she didn't drink much, and she was very anti drinking. And then all of a sudden, she's drinking liberally, and you can kind of tell, ‘oh, wow, mom’s drunk right now’. And you know, then she would eat a lot too. So, she's drunk and has, like, some whipped cream on the side of her face, literally doesn't even know and care. So, the action of drinking and then seeing her drunk, it's just new things. And we started realizing that yes, she, you know, if it's not in front of her, she's not going to do it. But once there, she doesn't realize that she's drinking liberally and a lot. So maybe, I don't know, maybe that was a good thing. You know? She had a really aggressive stance against alcohol, and maybe that helped her cope a little bit in the in the beginning. But that was a big moment for me.

Poli:  I think, Allan, the biggest thing about that, I forgot, but is, mom was very careful. She would have maybe one glass in a social situation, maybe two, not any other time, but it was a complete no knowledge of how much she drank before. So, in a social situation, a family get together, here is our mom, who really, you know, she'd have a drink to celebrate, maybe a glass of champagne, but was suddenly drinking way too much and also eating dessert, which was a huge sign. She would like, normally, turn down cake or deserts or have only the little tiniest slice. Suddenly she'd have two because she forgot she had the first one. So yeah, I forgot about that.

Boni: Yeah, that's it. I was just going to say, it's so interesting to listen to everybody's observations and think, “Yeah, you know what? The alcohol is definitely huge”, and it wasn't even. It's been a long time that she's been having more than a glass and using it as you said Allan, at first just medicinally to help her sleep and you know, that kind of thing. And then it became very important. One of the reasons we have to go out there was if she didn't have her bottle of wine; at that point, she had upgraded to her Gallo, and where and Mike would actually go and he would buy her some bottles because he was so…

Allan: Appalled by having Gallo in the house?

Boni: Yes he was. He would find ones that she liked and make sure she was stocked with it because, but at that point at home, you know, she had that little tumbler that she liked and said she wasn’t. But in social situations at our house, especially, she would forget that that she had… which glass was hers and that she had had some. Interesting how we all kind of remember different things.

Poli: Yeah. That reminds me of showing up at her house and finding like wine stains on the wall going up the stairs. She had obviously, like, fell and spilled, and it splashed up there and you wonder like, “Huh. Was that the second glass”? Because it started happening more and more. That's yeah. Yeah. Good point.

Allan:  Well, I think that for anyone listening, if any of these early signs are things that you might be seeing in a loved one an older parent, this would be a reason to take them to the doctor and start going deeper and looking into mental health and dementia. And as we said in subsequent episodes, the sooner you start the journey, the more you're protecting yourself from being in control of the key decisions that you'll need to make as a caregiver one day. So, I will end by saying that I sure am glad that we got to be a team as caregivers together.

Poli: Yeah. Thanks, Allan.

Allan:  Love you guys, talk to you soon.

Thanks for listening to Alz In The Fam. In the fight against Alzheimer's and dementia, we are all family. Find us at Alz In The Fam on Instagram, Twitter, Facebook, YouTube and on our website alzinthefampodcast.com. We appreciate you clicking that subscribe button on Apple, Google, Spotify or whatever your favorite podcast catcher may be. Alzheimer's sucks, but we're in it together. We are Alz In The Family. Talk soon.

Start listening to Alzheimer's Care & Technology
45:53
Start listening to Alzheimer's Care & Technology
45:53