Episode 3 - Alzheimer's: The Sundowning Syndrome

Transcript for Episode 3 - Alzheimer's: Sundowning

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.

Poli: Hi Allan.

Allan: Hey, Poli, how are you?

Poli: Good!

Allan: Good. It's a crazy world out there. Glad to be with you.

Poli: Virtually, it's great to be together virtually.

Allan: Virtually. Yeah, we're recording this, it's getting to be near the end of April. Social distancing continues to be a in effect. A lot of love to all the caregivers out there who are being affected by everything happening in the world, even more so than normal. It was tough before, and it's tough now. So, love and solidarity to all.

Poli: Yeah, it really is. It's rough.

Allan: So, for today's episode, we're going to talk about a phenomenon that's called twilighting.

Poli: So sundowning or twilighting is very common in Alzheimer's and related diseases. And it's when, as sundown approaches or at twilight the person becomes increasingly anxious, aggravated, may want to wander, confusion.

Allan: Right. All symptoms that we saw in our mom. And so, we're going to talk about twilighting throughout this episode, what we saw in our mother and what we did about it. We're also using an article from the Mayo Clinic as inspiration and to help guide us throughout this. So in our show notes, you can find a link to that article is well, for more information.

Poli: Yeah, I think that article gives a good, brief description. And there are others obviously, all over that you can find because this is such a common symptom of Alzheimer's. I really don't know anyone who has a loved one with Alzheimer's or a related dementia that doesn't have this issue at one point or another. So, when our mom first started exhibiting it, we didn't realize that it was an Alzheimer's symptoms. We didn't realize what the problem was, so she was living at home still alone.

Allan: And this is, again, about 10 years ago. We mentioned in previous episodes that we really kind of tracked the beginning of our mom’s journey with Alzheimer's with my son being born about 10.5 years ago. So, Mom just turned 84. So, let's say in her roughly about in her mid-seventies is when we started noticing this.

Poli: Yeah, so, 10 years ago, roughly. She was still living alone in her own home, doing pretty well. She started at night a couple times calling, very upset. She would call from her home phone, her landline still back in day.

Allan: Back when landlines still existed. Yes, there was a time.

Poli: Yeah, and she'd be like, “I think there's someone in my house” or “there's no one around, all of my neighbors are gone. I can see their houses are dark”. She would just… a number of extremely afraid circumstances. So, I mean, she was so terrified that something bad was happening, that people were in her house, that people might try to get in her house. But before that, backing up a little bit, she also had this thing where she wasn't sleeping well. This went on for a couple of years, but in particular, her chief complaint was that she could hear everything. The furnace drove her crazy. The sound of the birds chirping suddenly was annoying.

Allan: She talked about her skin and itchiness as well.

Poli: She had itchiness and have never really figured out what was going on. Except one dermatologist said that itching often comes out at night because your mind calms down. It doesn't have anything else to think about. So, you start, the itching comes on. So, we had, with the backdrop of that, she suddenly started calling, it was always right around sundown and just, “Oh my God, someone's in my house. I don't know what happened”. One time she called and said, “someone rearranged all my furniture in the family room”, and I was terrified for her. I would switch her to my cell phone and jump in my car and run and get her. It's about a 12 - 15-mile drive from my house.

Allan: So she was calling your landline, too then.

Poli: She would often call my landline back in the day. I kept that landline going until a couple of years ago, only for her because she still remembered my number. Yeah. I’m sure there's other people out there in the same situation, because I only use my cell phone. So I drove all the way out there and would find her standing at the end of her driveway, maybe afraid to go in that sometimes. Sometimes in her kitchen, but right by the front door so she could run out because there might be someone there, with that long phone cord stretched all the way to the front door. And she would be shaking. She was so terrified and crying and just really upset.

Allan: Ah, it's so hard to listen to this and remember that time and not get a little emotional about it, strictly thinking about it in the backdrop now. Like I live in Brooklyn, New York, and right now again, it's April 2020, height of COVID-19 outbreak and I look outside and it's amazing how few people you see. What's normally such a vibrant city, is almost a ghost town now and so that's a little unnerving. But to be someone in the early stages of dementia, not know that and not understand why and to look outside and think that “oh my gosh, where is everyone? Am I all alone”? Just what a what a horrible, lonely feeling. And, you know, thank goodness that you live close enough where you could be with her through a lot of it, Poli.

Poli: Yeah, I mean it was terrifying to me because at the time, at first I didn't know. I think I thought she was, she might be right. Maybe there was someone in her house, and so it took a few more times, well, maybe 10 or 12 times that this happened before we realized: “Wait a minute. There might be something wrong with Mom, too”. So, we went and got her. I'd bring her to my house, but early on, there was no room at my house for mom to spend the night. Sometimes it was freezing cold outside or it was sweltering hot and I’m getting Mom and by the time I got there, it was pitch black out, and, we just had to deal with it during rush hour sometimes. But I would I would bring her when my kids were both home. We didn't have an extra bedroom, so I would bring her all the way to Bonnie's house, which is 25 miles from Mom's house at least, and show up at Bonnie's house now with a terrified mom. Or maybe she's a little, eventually, she would be a little angry like, “Why are you taking me here”? She wouldn't remember that she had been terrified in her own house and show up - everyone in their pajamas, you know, the kids doing their homework or whatever. And drop Mom on her doorstep and go home to my house. And then immediately Mom would start, “when is Poli coming to get me? I want to go home. I don't need to be here”. So, we were spending a lot of hours driving back and forth trying to manage Mom and her symptom. But the sundowning, I think, was one of the symptoms that I had the most sympathy for her because she was truly and really terrified. And, I think we've talked about this some in our family, anxiety is a horrible thing to live with every day, and she really was suffering from anxiety and that every night, terrified feeling is just a horrible way to go through life.

Allan: It is it. It's a little difficult to relive this time in what we're talking about right now too because the truth is, we didn't know at the time that this was a sign of dementia and Alzheimer's. We were just kind of living our own lives. I had newborn children, you had teenage and preteen children, we all had kids and were very focused on this part of our lives. And it probably took us a little bit of time to even realize that something was wrong and cater what we were doing from something simply reactionary to something that was very purposeful because we knew what was going on and ways to do it. So, I think by the time we were, or you and Bonnie and our sister Trissi were kind of bringing Mom to your homes for overnight stays as a way to treat it. This is probably a couple of years of this going on as we learn more about it and really focused on it in the way that it needed to be focused on.

Poli: Yeah, there were a good five or six years where we were doing this. We got better at it, predicting when it was going to happen. So, if there was going to be a snowstorm or there was a series of thunderstorms predicted. I think one of the most interesting things to me was that it wasn't just sundown, but any time the sun decreased. So, in the buildup to a thunderstorm, she would become terrified as well, and then just call us and report “this is the worst storm I've ever heard. I mean, in my life, this is the most wind, the most lightning, the most thunder. Right”? But every time, and so we eventually just started getting her before the storm, if she was still in her house or keeping her away from the window. And, Allan, I think you recall Mom used to love thunderstorms.

Allan: Yeah, it really stands out to me. So, growing up, before twilighting and sundowning, Mom loved thunderstorms almost in a in a romantic, metaphorical sort of way. She loved, she would say, “we need a good thunder buster to come in here”, as she would refer to it. And I have a lot of really fond memories of sitting on both in our front porch and our back porch with mom and just watching thunderstorms. And I can you know, to this day I can recall sitting with her, the smell of the rain, watching the lightning strike. You know, we had a nice, open backyard where you could really have a good view of the sky, and to have her suddenly go from such a respect and admiration and awe for it to one of terror, I really think about Mom and miss her a lot now when I see a thunderstorm.

Poli: Yeah, it's so true. We, I think we all have that experience even from a very young from a young age, I remember it. And that's one of the few things you got from Mom. That was the same that Bonnie and Trissi and I got when we were young. So this started happening a lot more, and one of the things that happened was it got to be a lot of work to try and manager if she wasn't with us and oh no, a storm popped up or, you know, in the winter it can start getting dark at 4:30. And I think some members of our family were frustrated with mom and having to deal with her and didn't want to have to constantly go get her, figure out what we were going to do with her right at dinner time sometimes.

Allan: There’s a denial phase that I think every family who goes through this needs to forgive themselves as they advance through their journey with it. Because you just, at first you don't want the inconvenience of your parents suddenly becoming a pain in the ass, right? Isn't that kind of how it feels a little bit at first? Like what is going on? Why are you so needy all of a sudden? I mean, I think that some of us had hard days where we were even doubting her sincerity of the matter and you know, it elicits some, you know, no parent child relationship is perfect, so it even elicits a little bit of resentment toward them, cause you don't know what's going on yet. You don't have the information. You're just somewhere on a journey that, in our case, ultimately led to this discovery. And now we understand that you know, what was going on is that was our mother changing, her brain changing. But at the time, it's kind of like, “Oh, my god, Mom. Again”? Yeah, it was hard.

Poli: Yeah. Now it was incredibly difficult dealing with her, and at the same time, it pulled you away from your own family, your own children at a at a difficult time, every age. Kids are a lot of work and they need you there. Maybe you went to work all day and then came home, and it was the one time you were going to be with your kids and have a little family time. Maybe you had dinner on the stove. Maybe you were helping with homework, and she calls. So, we all have that frustration. I mean, really, we wanted to help, but anyway, so how we handled it? We handled it in different ways. One thing that happened was a neighbor across the street became someone who once in a while, would see mom outside and / or pacing and waiting, and would help her and invited her into their house. That was a huge help. I mean, I cannot describe what a relief it was for us to know that we had a neighbor looking out for her even one time.

Allan: Right? Somewhat fortunate that the neighborhood in which we grew up and where our mom lived from 1969 to 2017. It's a long time, um, for decades, surrounded by the same neighbors, which was definitely a comfort to us.

Poli: Yeah, so one thing was a neighbor that helped a couple times. Another thing was Trissi. I said, “I'm not going out there. I can’t”. Her kids were younger, maybe that's it. She decided she would call mom, and she was very adept. Bonnie did this as well. And you, Allan at calling and sort of distracting her from her immediate anxiety and panic, and instead would talk to her about what her day had been like, what the kids were doing, what was she planning to do. Mom loves to talk about the weather, you could talk to about the weather if it wasn't currently thunder storming. And Allan, I think you had some special ways of distracting mom from her anxiety and panic.

Allan: Well, sure, I was fortunate. So, over this few year period, it coincided with my son Marko learning to talk. So, to be able to call up and have a little kid say “I love you grandma”. You know, and little things. And having speech be formed. So, in a lot of ways, my son's fondest memories of his grandmother, of Mom, are these early conversations, you know. She would call him Marky and would remember enough of the conversations toe rave about him. And it seemed that after she would get off the phone with him, she would want to call and talk with all of you about how cute he was and so forth. So those were those were days where relationships were formed. And in that consistency of just knowing to call around sundown every day. So, strangely enough, some fun memories of that period as well.

Poli: Sure. Really, you could help her out and get your kids to get to know their grandmother a little more.

Allan: Absolutely. So, well, I was going to say another thing that is in this Mayo Clinic article that it offers as a potential reason and symptom of sundowning is it could be a sign of an infection. And a really common infection is a urinary tract infection. A UTI. And that was something that certainly coincided with some of Mom's medical issues in those days as well.

Poli: Right. We saw this in Mom towards the end of the time when she was living at home. So, by that point, she had been living with the disease for a good, I don’t know this was, like, 5-6 years ago. So maybe five years along, she would be increasingly anxious, and it started happening every night with the sundowning, and we learned through talking to other people that people with Alzheimer's, people living with Alzheimer’s can have urinary tract infections and not even know it. And so, she would not have any other symptoms of a urinary tract infection you might think of, like you or I might have or a young child. Her only symptoms; she would have no fever, not even accidents. She would just be crazy panicky. And she would do things that didn't make sense for her, which was like, run away, hide. So, yeah, infections can be an important thing. And again, the first time, I don't know how long she had a urinary tract infection before we figured it out. It's really hard to recognize these things in your person that you're caring for compared to reading about it. Oh, yeah, here: that's a common, but it's difficult, right? I feel bad that we didn't diagnose her or get her diagnosed earlier, but when we did, it really made a huge difference. You know, 1 day, maybe two days of an antibiotic. And she was, um, more like her old self.

Allan: Sure, right. Amazing how common a UTI seems to be and I don't say that from a medical standpoint, I say that from a personal experience and just talking with others who have gone through this, how a UTI really is this telltale sign of larger issues in the elderly.

Poli: Right? A lot of the weird behaviors you see end up having something to do with the UTI. But how? How would you know? I don't know.

Allan: You learn it.

Poli: But it’s something to check.

Allan: You learn it the hard way like we did. You know, the remarkable consistency of the issues. Eventually it just… we had to do something, and this is what we did. And I think as we as we wrap this episode, I would encourage anyone listening to this that if they're noticing any strange changes in behavior in their parents or grandparents or loved ones, and they're noticing that strange behavior that's coinciding with the sun going down, that that might be a good time and a good reason to maybe bring your loved one to a doctor. Get them checked out. The sooner you begin the journey, as hard as is it is fraught with denial, fraught with inconvenience, the easier it is to provide help for them and put together a plan that could save a lot of heartache and frustration in the long run.

Poli: Yeah. I mean, I think that's a theme. You're going to need help. The earlier you are willing to ask for it, go seek it out. The better for you, the better for your loved one. You know, we're lucky we have each other or in our family. Not everyone has that. Not everyone is so lucky, and I will say the number one thing that we did to help try to prevent more sundowning issues was to keep Mom to her routine. So, Mom needed a few things as the evening came on, we needed to. First, we talked about the UTI. But beyond that, um, make sure she had food. Eventually, she became not as good at getting her own food or cooking her own food, so we had made sure she had a lot of prepared food at home. I had to make sure she had her wine; she liked a glass of red wine at night and she would bring it upstairs and have it in her bed. We had to make sure her TV was working, which eventually became a difficult issue because she liked to unplug her TV every day for some reason, and then it would take time to reboot or she would press the wrong button on the remote. But that's another, that's a whole other episode.

Allan: Right. Well, the TV schedule and having that working was key because she absolutely had evening programming that she liked and really enjoyed. What was that guy's name who was popular back then? Mencia. She loved that show ‘Mind of Mencia’ during this time. And so if you had her in bed and watching that, she was probably pretty happy. She was going along.

Poli: She liked the Channel 5 news at 10 o'clock. Yes.

Allan: Well, we hope that we helped shed some light on what's a pretty interesting phenomenon symptom for for those with dementia in the in the early phases. We are Alz In The Family. Thanks for listening.

Poli: Bye Allan.

Allan: Bye Poli.

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.

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Start listening to More Love From NYC, 9/11/21