Episode 8: Alzheimer's - Moving Mom Out Of Her House

Transcript for Episode 8 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.

Poli: Hey.

Allan: Hey.

Boni: Hey Poli.

Poli: Boni, Trissi, good to see you guys. Alright. So, you know, today we're going talk about how we decided to move mom out of her house and in with us. And I should say we did start out with a big family meeting, didn't we? Remember that?

Boni: I do.

Poli: Allan, you were there, too.

Allan: Yes.

Poli: So Allan was in town. It was maybe around the holidays. So, we were all here, and we knew Mom just increasingly needed more care. Troubling things were happening. And so we thought we're going move her in with us. We tried to convince her to voluntarily move in with us, but we had been sneaking more and more, just “Why don't you come to my house? Why don't you just end up spending the night?” and let a couple days go by. But Mom was always saying “No. I want to go back home, take me home”. So, she did need nearly constant supervision. I hate to call it supervision, but that's what it was. And sort of like I remember it being with Andrew and JP and Jack. And we were trying to help Mom do some gardening in her house and they said what she really needs is a security guard. She could go in there and do what she wants, but we need to make sure no one comes to see her that shouldn't. And, anyway, just a funny side. So again, Mom, still fiercely independent and she declined to move in with any of us. And so, we kind of not gave up, but we resigned ourselves to waiting for some difficult thing to happen. We thought, OK, one day will come and she will see evidence of the fire. Or she'll take the wrong medicine and be passed out. Or she'll be wandering around in the street like we've heard some of our friends’ parents were doing at night, right? But that's not what happened.

Allan: I think something that can't be overstated enough is one of the reasons why it took us a while to get to this point is how defiant our mother was to us at just the very hint of a suggestion that she might be living in a place that's no longer serving her lifestyle and the things she needs. You know, this quarter acre lot of a house, five bedrooms, built in 1969, old. A lot of work.

Boni: Yeah, and feeding off of what both of you are saying, you know, there's this thing that I always say in terms of mental health in general, where you know, when you boil it down, you get to safe and happy. So, we had been going along trying to keep Mom happy and making sure she was safe while she was happy. And suddenly it flip flopped and we needed to keep Mom safe, even if she wasn't going to be happy. And one of the things that helped with that transformation in our heads is the fact that we realized she was never happy. Other than in the moment. So, she would be unhappy at our houses and want to go home and fiercely adamant that she wanted to be home and home was where she was going to be happy. And we take her home, drop her off and barely be out of the neighborhood before she'd forget that we were there and be unhappy and scared. And then we take her to my house or to Poli’s house, or to Trissi’s house or wherever. And she would immediately be unhappy and want to go. So, you know, it flip flopped. You know, we needed to keep her safe. And the happiness became the secondary luxury that we look for now in the moment, happy in the moment. We could make her happy in the moment by taking her to get her hair done, whatever it is. But we needed to keep her safe.

Poli: We had a meeting. We were each going to try taking mom six months at a time. And I think it clearly became evident that wasn't really going to work. So we were mostly keeping Mom at Boni or my house and then we would drive her out to her house and let her hang out there for a while. We started seeing some bizarre things. One day I came over and she had flowers. They looked like they'd be been hacked from somebody's yard. They weren't like the kind you bought at the store. But I was like, “Where did those come from? Who gave you flowers? Where'd you get flowers”? Because we knew she wasn't driving anymore. And she's like, “Oh, there's this guy. He likes me. He just gave them to me”. And were like, “There's a guy that likes you”? I mean, she was beautiful alright, but still, at this point 80-some years old.

Boni: Poli I just want to interrupt and say that's literally the thing that I wrote down too.

Poli: Yeah. Well, and then there was an incident where it was couple, it was a week past Mother's Day, and I have been to Mom's house a couple times in between, and she'd been staying with me. But I showed up in her house, hadn't you know, hadn't been there for a while. For a day, maybe. And there were cards, greeting cards, on her kitchen counter. And I looked at them and they were Mother's Day cards, not from any of us, not from any of her children. And it was some, it was a name, some guy's name. “Thanks for being a great friend. You must have been a wonderful mother”, and I was like, who was giving her Mother's day cards? That’s so weird. And they were again, it might have been two weeks past Mother's Day and they hadn't been there before. So, somebody had been visiting Mom doing strange things like that. Another time I was at her house and I saw, I was in her kitchen and heard a noise and saw a man running away. And when I went out to the front porch to see was going on, there was some old celery and some eggs sitting on a chair where Mom used to sit. I was like, “What are you doing”? And he's like, “I'm just bringing some food for your mom”, and I was like, “What? Why”? He's like, “because I have enough. I don't need it”. And I was like, “she doesn't need food from you”. He's like, “It's a free world. I can give her some food”. Like really just nasty and not. He was about my age. So very young… And in his fifties and driving like a beat-up old van, you know, just scary.

Allan: Well, and something, another thing and really scary part of this journey that you learn about is that people do prey on the elderly. And there are people in neighborhoods all over the world driving around and casing neighborhoods for the elderly and the vulnerable. And so that was a whole other thing. I mean, it got to the point where I even considered calling our old next-door neighbor, who I knew were gun owners, and we're like, “you know how once they cross the threshold into the into the house and you can shoot? Would you mind sitting right inside the threshold of my mom's house and wait for these people”? I mean, it makes you so crazy to discover how rampant of a problem this is and how many awful people there are that are spending their time trying to find elderly people to take advantage of.

Trissi: It really is. And our mother, if we haven't said this before, would sit out on her front porch for hours and hours and hours a day if it was a nice day; even a remotely nice day. She was never inside her house. She was either sitting on the front porch, gardening or walking. So, she was always exposed, and that made it even scarier.

Poli: Yeah, even in the winter, she would. She had a full glass storm door, and she would sit inside of that and just be looking out if it was very cold. So, yeah, she was always exposed. People knew what was going on. We thought we knew all our neighbors around her. What we learned about this guy was eventually, we learned he lived actually in her same neighborhood a little bit further away. Anyway, so bizarre things were happening. And, so again, we had our meeting in December, and around Memorial Day, on Memorial Day, we were having a little get together. We had a nice weekend with Mom and that Memorial Day Monday, we had driven Mom out to her house so she could have one night there. She was going to go with the neighbor across the street and do a little picnic. And we're enjoying ourselves. Then I got a phone call from Mom on my cell phone while I was at Trissi’s house. And she's like, “This man has his car in my driveway, and it's broken down and he says he can't move it and he wants to use my car”. So, this didn't make sense because Mom's car - first of all Mom didn't have the keys to a car. But second of all, if the guys car was in the driveway, he couldn't, she couldn't get her car out anyway. But anyway, and I was like, “Who is there? What is going on? Why isn't he”? I said he needs to just roll it out of the driveway. There's a hill. But she was very upset, which is weird, because this was, it turns out, the same guy that she thought she knew before. It was the guy was leaving her flowers and cards and, I said he needs to leave. He can't stay. And she's like, well, he says he just wants to leave it there for a while, and I said, “Absolutely not”. And she was really scared, and I said, “Mom, can you just go over to the neighbor across the street house?”, who was very good friends of hers. And she's like, “No, they're not answering the door”. So, from Trissi’s house, I made my son come with me for protection because there was a man there. Poor, poor Jack. And I've never driven faster in my life to this day. Never before, as I drove from Trissi’s house on Memorial Day to my mom's house for this guy. Meanwhile, I had Jack call the neighbor across the street who was 15 years older than Mom, and I was like, “What's going on? My mom said someone’s got her blocked in. Can you see? Is she okay”? So, we're both taking turns, Jack and I, talking to the neighbor and to Mom and trying to get eyes on what's going on. And the guy took the phone from Mom and said, “I just need to leave my car here”. And I said, “You need to call a tow truck”, and he's like “I can't afford a tow truck”. And I said, “Fine. I'm calling a tow truck and I'm calling the police”. And lo and behold, the neighbor across the street told me that he had gotten in his car and left. But I've never been so afraid for my mom in my life. And I can't imagine how many times this might have already happened before we were there. So, I talked before about we knew we would have to make a decision to move Mom permanently in with one of us. But we didn't think it would be this that happened. What we thought it was going to be was a fire or her wandering around at night or the police being called. And the police were called by the way, but it was not for the reason we thought. It was because there was a man who was coming on her property, targeting her doing God knows what. Do you guys remember how scary that was?

Boni: It was horrible. And, you know, I think again, it was the thing we didn't really think about or concentrate on. And Mom in general was very suspicious. and not welcoming of strangers. So, for this to happen, thank God she was afraid enough and suspicious enough to call us and tell us, and that we were able to grab it before something terrible happened. You know, it's just another thing that you have to tick off on that list and recognize that you don't know what's going on even when you think you do. You just have no idea what's happening in the background because they can't self-report.

Trissi: Yeah, but interestingly, now, when she says she wants to go home, she says, “You know, I have my own house. I live in a neighborhood. People come and talk to me. They visit me. I'm not alone”. So, on the one hand, at times she would enjoy the company. But I think that a lot of it was even depending on the time of day and the weather. She would become alarmed because she wouldn't necessarily remember someone who was visiting her frequently, and they would show up again. And, you know, it would become very aware to that person that Mom didn't remember who they were, and that made her extremely vulnerable. But now she talks about that as if it's, you know, a good thing. And one of the reasons why she wants to go home.

Boni: Well, I think. But I think that was true, you know that she did have, she lived in the neighborhood for 40 years and there were people who were coming by and spending time with her, taking her on walks and doing things like that. So, and she remembers that as opposed to what was happening later.

Poli: So I specifically remember, in relation to that, the police came, I talked to them and they said, well, you know, these, first of all, we knew the name of the guy because he had signed his name on these cards he gave to mom, and, probably should have called the police then. But who calls the police because their mother got a greeting card, right? But they pointed out that maybe I should do some research, because this isn't the first time this guy had done this. And I mentioned that I had looked up in a database in Montgomery County where Mom was living. And they pointed out that I might want to look out a few other jurisdictions, which scary as can be. Who? How did these people? I just, how is he not in jail? So, I said to the police, “Well he can't come see my mom”. And he said, “Well, but if he says, ‘Hey, can I come up and talk to you?’ And she says, ‘Sure’, then he can come up there”. And so, the one recommendation they had for us was to put a no trespassing sign in her yard. But that turned out to be a bit of a deterrent for other people. And so, I remember being over there, and there is another couple in the neighborhood who walked by and said, “Oh, Carmen’, I was inside, she was sitting on the porch and they said, “Oh”, they saw the sign and they said, “Can we come up”? And I heard them, and I ran out to see who's bugging my mom now. It was is very sweet, couple very nice. And they said, “What’s with the sign”? And I said, “You know, we've had a problem with someone harassing my mom, and this was recommended by the police, but I hope that you'll continue to come and visit”. But it really did deter friendly people from dropping by a little bit, too.

Allan: Really tough situation. In a way, it was one of the only things that really could have led us to action too, because our mother’s’ defiance and complete lack of interest in moving out of her house. The anger that she would feel and directed toward us, I think, really, all four of us really felt that on a very primal level. And I think it's because we know that our mom, there's a lot of things about our mother's life, which is kind of sad for her in her life story. She was born in Puerto Rico, her biological mom and dad were both alive during most of her childhood, but her mom. I'm sorry, her grandmother took care of her for the most part. And then when her grandmother passed away when she was still a kid, she lived in a boarding school. So, there's a lot of hurt and there's a lot of things that the four of us don't know because our mom never shared anything. We found out, you know, little things over the course of decades and have stitched some things together. But, by the time she came to the US in her early twenties, she never went back, ever. She's never returned to Puerto Rico. So just that information alone, we just, we know there's a lot of hurt there. And then, of course, we know that with her marriage to our father, you know, for anyone that's ever known an alcoholic, that's a difficult person to love who has that type of disease. And I think she tried really, really hard for many, many, many years to make that work out, her marriage work out. And when that failed too, I think that's another big personal hurt and betrayal. So now her children, who she adored and literally gave her entire life to strictly following the separation with her husband with our dad, now where this the next chapter of inevitability to hurt her once again. And I really think it, her defiance was so strong, and we felt it so deeply because we knew it was coming from this this deep personal hurt of these other critically important moments in her life.

Trissi: Well, we grew up with her telling us: “Don't ever put me in a nursing home. Don't ever put me in a nursing home”. I mean, I don't remember a time when I didn't know that we were not supposed to do that. And again, to Poli’s credit, she was the primary caregiver, she did everything in her power. I mean, she put security cameras in her house, or cameras, I guess. Nanny cameras. Security cameras we had too. But a nanny cam so that we could try to see when and if she needed help when she wasn't contacting us. And that I think for me was the moment when I realized, you know, we just have to do something. Um, Poli had sent a recording of her in the kitchen, which is where the camera was, because that faces the front door. And, it was just heartbreaking, absolutely heartbreaking to see what she was going through on her own.

Boni: Yeah, and I'll say this. You know, when we talk about how we wanted to do the six month or the two week or whatever thing, I think what had happened is that we honored Mom's wishes to stay in her house, past the time where we could successfully take care of her in our homes because it got to the point, by the time we finished stitching together her living with me three days a week and using our caregiver to help drive back and forth and, you doing day memory care and all that. You know, by the time that we said, “Okay, there's zero allowance for Mom to be able to spend that one night at home”, because that's what was happening. She would spend two nights with me, go home one night, go to Poli's one night. You know, maybe then Trissi’s one night, spend one afternoon even at home. And by the time we got to the point where it was time that she could not stay by herself anymore, she also couldn't stay with us because the need for care is 24 hours and you couldn't take a shower. It was like having a new born baby, but having a newborn baby that had their own set of expectations of what she was allowed to do. So…

Poli: Still, the whole thing with, well, that we've been talking about – We knew we couldn't actually let Mom stay in her house alone anymore.

Trissi: Well, Poli, we also, I remember discussing the fact that if we had… if we were able to put her in an assisted living facility now than maybe when she wasn't so physically healthy, because she's so mobile still. And she could just, you know, walk out the door and go for a walk and, you know, walk for three miles. And she wanted to be busy and be entertained and do things which was really hard because we all have very busy lives too. But I think we all kind of have the thought - maybe we do this now and maybe later we will be able to have her in our homes.

Allan: Noteworthy is that she was defiant about moving in with us, too. So, we may as well have been a nursing home in her mind as well. It was just the very idea of her moving out of that house to go anywhere else other than that house was just met with anger and hurt in a way that resonated to the core with all of us. So, I don't know that she had the capacity to appreciate what the difference would have been of living with Boni versus going to a nursing home anyway. Like the level of defiance and hurt was the same thing. I certainly have friends who have parents where they say, “Oh can't we live with you”? You know, as some sort of interim stopgaps. So, they deal with that dilemma and that guilt knowing that they can't really care for their parents, but that's what their parents want to do. But we, it was just “I want to stay here. I want to die here. Why don't you just kill me now”? You know, it was we may as well have been saying, “Hey, Mom, it's time to die”. Whether we were offering for her to live with us or go to a home.

Poli: I'll point out we did bring Mom full time to live with, mostly between Boni and mine’s house. And that was complicated because I had kids in college and so I would take turns whose bed she would be sleeping in, whose bedroom. I remember one time, my daughter came home from college during a time when grandma was staying, my mom, our mom, was staying with us, and she had to drag a mattress in and sleep on the floor in our bedroom so that her grandmother could have her room for the night because that was her pattern, and that's what she knew. But then, you know, a couple months later she was back at home for the summer and my son was gone. And so, mom would have to stay in his room, which was something new for Mom to learn. Very difficult. She can't remember. She would say, “but I stay in that room”. It was just, it was a difficult arrangement and then sometimes at Boni’s house. And, of course, the minute she got to Boni’s house, I know, she would say, “Is Poli coming to get me? When am I going home”? She even says that now if we bring her to a party over the holidays or anything, and she's eventually going back to where she currently lives. She'll still say, “Is Poli coming to get me. Am I going? Who am I… where am I staying tonight”? It's a constant.

Trissi: You’re her person, Poli.

Poli: Well, but it's a constant concern for her. Where is she going to end up? And I feel like that was born out of us moving her back and forth so much during this period.

Boni: Yeah. I mean, that's definite. This is what I was saying about, you know, safe and happy. She was not happy being at my house, your house, or at home. I mean, there wasn't a place that was happy. And she associates my house with a party because that's when she would come. So she is, she constantly would say, “Are Janet and John coming over”? My in-laws. Or, “When is Poli coming? When is Trissi coming? Is Allan going to be in town”? And she associated every single day, every single minute with she was at my house because there was going to be an event with the whole family and, you know, we started doing, there's an anecdote that they talk about with President Reagan. How the Secret Service, when he was later in his Alzheimer's years, would throw leaves in the pool because he was very, it was calming to him to clean the pool out. He knew how to do that. And so, he would clean up the pool and then when he wasn't looking, they'd throw them back in. And we started doing a similar thing with my mom, who likes to sweep the front porch and clean my kitchen. So, God forbid anybody, not that anybody really wants to, but if when mom was coming over, we would not clean the kitchen so she could clean the kitchen when she came, right?

Poli: I remember you telling your… “Don't, no. Don't clean the kitchen”.

Boni: Yeah don't do that. And same thing with the front stoop. She liked to sweep out the front stoop, and that was something that she could do. And then always started letting her, when she would want to go on a walk, we would let her take the dog because the dog knew the way home. So, she could take the dog a little bit. It gave or something to do. She felt like she was… She always wants to be useful and helpful to the point where when she's spending the night, it's like it's exhausting cause she never wants to sit down and watch the…

Allan: Part of…

Boni: The Walking Dead, which confused. The Walking Dead confused her. “Why is everyone so ugly on this show”? “Because they’re dead, Mom”.

Allan: Well, yeah. I was going to say that having Alzheimer's is like The Walking Dead.

Boni: Honestly, I call it - It's the true zombie apocalypse.

Allan: Well, yeah, mental health is such a huge global crisis that you could almost… I think the best zombie movies and stories and the reason they resonate is that the best ones are metaphors for larger things. So, I think in some cases, a good zombie movie is probably trying to share a theme of, “Look. The people who are still alive are capable of even worse things than the zombies are”.

Poli: I think that's a good point, Allan, in that, you know, we're worried about our mom wandering around, not knowing where she is, being lost, being without purpose, without guidance. And here's this guy who is not a zombie, who does not have Alzheimer's, and he's preying on her. And so yes, the people without disease are worse, you know? I mean, we're lucky. I think most, I still believe most people are good people. But I will just tell you that that whole episode with my mom was crushing. It changes your view of the world. And that is so sad, you know?

Allan: Yes, it really is awful to be able to say this with such 100% certainty, but there really are bad people out there in the world, and they are everywhere, and some of these bad people, the bad thing that they do is watch, stalk and prey upon the elderly to take advantage of them, whether it be financially or, gosh, even worse. So that…

Trissi: I'm just going to add, sorry, didn't mean to interrupt you, but sometimes that can even be the caregiver, which we touched upon a little bit before. But because I knew that things that happened with my in-laws, I was very reluctant to have the caregivers that were chosen for Mom come to my house and, you know, know where I live and that sort of thing.

Poli: Yeah and you don't want to be that person because. But the thing is, Alzheimer's affects every single person in the family. That's, you know, our mother has Alzheimer's and we have a view of the world that is a little more hostile than it used to be in it, or we view the world as being more hostile than we used to. We see that not all people have intentions that are helpful to our mother. But I will say, on the other hand, I have met people and I can't believe how wonderful they are and how great. So, we are seeing the whole spectrum of people in the world.

Boni: Yeah, I can't agree more. And there's two highlights there, and that is that, you know, we learned as we went through this process, that people were caring for Mom and watching out for her that we didn't know and just about everybody we knew about and people we didn't know about were caring for her. But it only takes that one thing. We talked a little bit about the one big thing. What's it going to be? And we were looking out for trying to build walls around Mom so that she could stay in her home and be safe from that big thing. But that's all it takes, you know, just one out of however many people that were involved in her care, it just took one.

Allan: Yeah, I think worth noting is that despite knowing this now and having to deal with something so dark and having to deal with it in our personal life, I think it is safe to say that we all still agree that there's more good people in the world.

Poli, Trissi, Boni: Yeah definitely. Totally.

Poli: Oh, people who will selflessly take care of someone else's relative. Yeah.

Allan: Yeah. I think all of you are good people too. What a family.

Poli: Yeah thanks, we need each other.

Allan: Alright this was, well this was heavy subject matter, but always a pleasure to be with you. We are Alz In The Fam.

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