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. All right. Hey, everyone.
Trissi: Hey, good morning.
Allan: Poli, Boni and Trissi. Good morning, good afternoon, good night. All over the world, wherever you may be listening to this it’s nice to be with you. We’re Alz In The Fam and this episode we're going to talk about one of the most important decisions that we had to make in our journey as caregivers with our mom, who we may have not known that she had Alzheimer's yet during this process, where we were in the journey, but it's our decision we had to make to bring a caregiver into her house. It started becoming clear that our mom Carmen needed more support and care if she was going to stay living in her house alone, which she really really made clear that that was her wishes and that's what she wanted. She wanted to continue to be independent. She wanted to stay in her house. And so, the flip side of that was, it got to the point where our mom needed to be checked in on at least once a day and Boni, you and Poli were working full time still, had young children. Trissi had young children. Poli, you lived the closest to Mom, so you were visiting 2 to 3 times a week for a few hours at a time, and that just wasn't enough anymore. So, we had to make this decision.
Poli: Yeah. So, we were increasingly seeing signs that mom was just not making it on her own for a full day. She needed someone to go and check in on her. So we, a person was recommended to us again by the people we knew at the Georgetown Memory Disorders Program who had been helping us with our mom and they knew of a great person. And we were like, wonderful. We called her and she wanted to come meet with us at our mom's house where she would be providing care for Mom. And so, Boni and I both went over there and met with Mom and this caregiver. And, Mom was feisty and not welcoming to this person. Adamant that she didn't need help, that she wanted to be in her house alone, almost to the point of being rude. After the person met, who was lovely and experienced, but also wanted to work eight hours a day, Boni and I stayed to talk with mom, and she was maybe as angry as I've ever seen her at Boni and I. Angry and hurt like I knew we'd really hurt her. Boni, do you remember that?
Boni: I do. You know, exactly what you said. We were really lucky to have gotten this recommendation for this person. She was very highly regarded, and she was professional in her job and was giving us guidance as to what might happen. And mom was exactly that. I actually recall that we had to cancel once on her because we couldn't get Mom to agree to allow her in the house. And then we were able to just basically show up and not tell her, but she wouldn't have remembered anyway, and then brought her in and Mom was just so upset at the idea. And I know we've mentioned it in an earlier episode but living independently and taking care of herself was one of / is one of the most important things that my mother continually talked about and talks about. Now it was something that she is very prideful about, though, to go to the idea that she would need somebody. It was just so against who she is.
Poli: Yeah, I'm gonna jump in here and say it's not like we one day woke up and decided someone needs to go see Mom. We can't do it every day anymore. Things happen. So, she had a small leak under the sink in her bathroom from the water valve. That kind that came in there. I don't know if that's called a valve, but she apparently was seeing it over time, but then, never telling anyone. Never. Would forget to tell anyone. And at one point at night, she… This is the story she told me. She noticed it and went under the sink to just try to turn off the water supply and a piece broke off and water was just coming out much heavier. And so, I heard from her at maybe 8 a.m. the next morning, and she said, “Oh my god Poli, I don't know what to do. There's water coming out in my bathroom and I don't know how to turn off the water in the house”. She needed to turn off the water supply in the whole house, and a lot of people might not know how to do that. But I told her, “Okay, you go in the basement and there's a thing. You turn it off”. And she I was trying, and I also should say, how great was it that she had a cell phone at that point? She could still use it, but not well. She didn’t know how to put it on speakerphone, so she's trying to do that. She couldn't do it, so at you know, 9 a.m. on a Saturday, I drove out as fast as I could. And meanwhile, water's leaking, leaking at her house through the ceiling and the floor below, and I turned the water off, and it was the simplest valve you could ever, or the simplest lever you could ever turn. And she was just turning it in the wrong direction. And you could see marks and signs of fatigue in the metal that she had been trying so hard to turn it the wrong way. I mean, we almost had a huge crisis, so that kind of thing was happening. You know, everyone's busy with young kids, and it would be like in a moment's notice you needed to run out there.
Boni: Yeah and the getting the scared and not knowing where things are. And, you know, Mike was going out there and checking under the bed and in the closets and things like that because things weren't where they were or where she thought they were going to be. And so, she thought that someone had been in her house and would be terrified.
Trissi: And then there were the thunderstorms. Poli, I just remember you, one summer when we were just having thunderstorm after thunderstorm every day in the afternoon at the same time, and you would have been out there already, maybe in the morning to help her and we're back home, and then a thunderstorm would come along and she I would call you. And, you know, want you to come back out there.
Poli: So, we knew we just needed more. So then, finally after one of these floods or one of these really, really telling incidents, Mom kind of agreed. Felt like she was being punished. And so, we brought this person, and it didn't work. Mom wouldn't let them in the house when they came on their own, she wouldn't let the woman that we'd hired in her house when she came alone. The best visit we ever had with her was we went, we took mom to have lunch with the woman, and mom agreed to that, but kept giving her the eye like who are you?
Boni: And again, told us again why don't we just kill her if we didn't love her and was going to do that. And if she needed to, have someone that was, you know… difficult.
Poli: So yeah. We moved on. We said, fine. We didn't. I gave up pretty fast because it was clear we were spending a bit of money and it wasn't working.
Boni: Yeah, and this was new to us to at this point Poli, and Trissi, everybody. I really feel like we were kind of like, you know, what do we do here? And it was overwhelming for us to try and consider going from nothing and managing it within our family to bringing in someone who wanted to work eight hours a day. That really wasn't what we felt like we needed at that time either. So, it was easy to say “Okay, we're not there yet”.
Poli: Yeah, I'm going to move on in the story. So, that person, we told them we couldn't use their services anymore, even though she was fabulous. And you know, tried to go out to Mom's house more often. Tried to, we took the keys away from her to her car. That was not easy, either. We were providing groceries to her, bringing groceries to her, making food for her, leaving her with prepared meals. So, we redoubled our efforts and started going out more often. And let's just say we all had some push back and this was a difficult time. So, we had our first caregiver that we brought in the home, Mom’s home, and it didn't work out, and we sadly had to tell her we couldn't use her services. It just didn't match with what we needed at the time. And Mom was so angry and hurt that we'd even thought that she might need help. So, time went by, we tried to redouble our efforts to go out and see Mom more often. This was sometimes twice a day as Trissi mentioned. So then, things got worse. Things changed. Who wants to tell some things that happened? Trissi? Boni Anybody?
Boni: So I remember a specific time when there was a storm, and at that point, we had actually made a schedule of who was going to be available in the evening to either go get her or to talk her down from being upset in the evening. And it was my turn, or I was trying to go get Mom to come and spend the night at my house. And I live in Virginia, she lives in Maryland, and you have to get on the Beltway. And I was driving down Georgetown Pike and I got to the Beltway and I looked over and it was shut down. It was, there was a backup that was huge. And I remember I called Poli and Poli had plans, but she was the only one who could get there. I think, I don't remember even how it resolved other than I was two hours on the road trying to get to the Beltway, even on what was supposed to be a half hour trip and we just couldn't get there. And so, we were struggling with trying to figure out the best way to be able to transport Mom back and forth, or to be there for her and to manage her fears and to manage her meds and to manage her social activity. And it just was becoming too much for all of us. And we realized we couldn't do it all by ourselves, and we weren't catching everything. Again, going back with medications, with her fears, with feeding her. All of those things were becoming too much for us to be able to do on our own.
Trissi: Yeah, I think for me that was such a hard period because it was the busiest time probably in my life since my twins were infants, because they were juniors and seniors in high school, and we were just in the throes of college applications and SATs and, you know, APs and traveling for tennis tournaments. And I think overall, it is more comfortable with help because we have had to go through it with my mother in law. For years she had help in her home. Now it was different because she had a husband most of the time. But I will say that as soon as it was just my mother in law and the caregiver when her husband passed, it became a lot trickier. A lot trickier. When you have someone managing someone for so long, overseeing that caregiver and then they're gone, even if you have the same caregiver, it can become difficult. So, and she didn't have dementia either. So even with that, it was hard.
Poli: So, we called back the first caregiver we had tried. Things had gotten harder, gotten worse. Everyone was busy and she said, “Sorry, I'm busy. I’m taken”. I mean good, good caregivers once, you know, especially someone recommended by a program, I mean they go fast. Somebody else snapped her up. So, she said, “But I have a person who works for me, works with me and I'll send her over”. So the second caregiver was willing to work only three hours a day, three days a week. Which is kind of what we thought, if we could just get, you know, we could just get a few days a week where we didn't have to visit, where we knew someone else were. And she was great and had her own car and would drive mom places. So, by that point, we did end up using her mostly as a chauffeur for Mom. To drive her back and forth to other places. She did come in and make food or bring food to Mom and I would pay her back for that. Of course she didn't, you know, she would buy the food and bring it and make it. But mom also was, you know, difficult because she would say, “Who is this woman at my house banging on the door”. And I was like, “Mom, I told you, she's there to help you. She's gonna bring you or she's gonna do that”. And she’d say “I don't need help. I don't know her”. And so, it was a lot of management. I had to make sure that the new caregiver, that mom knew she was coming, so you had to call Mom, catch Mom. You never knew, Mom might just decide to go out for a walk, not have her phone with her, not have her phone turned on, not have charged it. Whatever. So it is a lot of work.
Boni: But I will say a difference here was, as a year passed, reflecting on it is that Mom started trusting us more than herself. So, when we did call her and get her, she would believe us and go with someone who was a stranger to her, and she would get in that car and not like it. But she would get in the car and come to our house. And so, or she would allow her in. And so, that was a real change in her cognitive ability. I mean, she was trusting us to let someone in.
Poli: It was easier if the person was delivering Mom to us. To just say that Mom was, to just have a person who was really, we were paying for three hours of work who mostly was ending up just driving Mom back and forth, it was great. I'll take it any time. But Mom just didn't really allow her to do the work that needed to be done in Mom's house. So, for instance, we needed someone to tell Mom to take a shower. I mean, remind her, “Hey, don't forget, we're all going to get together tonight and, you know, go to dinner so make sure you shower”. But and that's a difficult situation to decide to what to tell a caregiver coming in. It's okay for you to make my mom shower. I mean, I don't know. Trissi I think you had experience dealing with caregivers who may or may not, and we didn't have this experience. We had, you know, good caregivers who, you know, earned our trust and deserved it. But Trissi, maybe not so much your experience with your mother in law?
Trissi: While we had some great caregivers for her over a long period of time and then sometimes someone would come in and we thought they were great, and we would come to find out they were stealing her medications. In one case, a credit card was compromised. So, it is a really tough situation allowing someone into your home. That happened even when my stepfather in law was around. So even with somebody else in the house, that happened.
Poli: So, a person with dementia who can't even report to you.
Poli: So, eventually, we were using the second caregiver to drive Mom back and forth, do some light cooking or providing of food. But one day she showed up to drop my mom off at my house with Mom, and she said, “Oh, by the way, my father is sick back in my home country and I'm leaving tomorrow to go away for I don't know how long”. I, at the time, I was already finding it to be a bit of a chore to constantly manage, you know, did we need this caregiver today anyway? Did we have a specific job for her? Because Mom couldn't certainly manage it. She wouldn't let the caregiver do things. So, I'd have to have an arrangement. Let's say it was definitely work to manage the person and it was. So, at the time when this person told us they were gonna need a break and left us kind of high and dry without another person was okay, because, Mom. It's not like Mom was gonna die or be critically ill if she didn't get her medication for instance. But it left us a little bit in the lurch, so we said, “Of course. Okay. I mean, if you have to see your family, we can't expect you to take care of our mother when you know and not see your parents”. So that kind of went away. And when she eventually came back, we had moved on. Let's say that. And I think it was less. I was relieved not to have to manage the person anymore. Boni what did you find then? Then Boni found us another person to help.
Boni: Yeah so I felt the same. I mean, that second caregiver wasn't a companion to Mom which was kind of what we were looking for, as opposed to just someone who could drive back and forth. And so, when we were struggling to give three hours because it's only an hour and 1/2 if you go get Mom, if you drop something off that kind of thing, she wouldn't go for a walk with Mom. She wouldn't do anything because Mom was not open to that. So, when all of this happened, I, we didn't have another recommendation at that point, started researching people and reaching out to see what was going on, and I found someone who lived pretty close to me. And at this point again, the main thing that the caregiver was doing was reporting back to us on Mom’s food and medication situation and then driving her either to Poli’s house, mostly Poli’s, because she didn’t even want to come to my house most of the time so she would bring her to Poli’s and Poli and I would meet somewhere.
Poli: You were working at that time too.
Boni: Was I working? I can't remember. Yeah, that's right. I was. So we were, you know, passing back and forth, doing a lot of transportation type of stuff. And it wasn't… we were paying more than what we were getting for for that second caregiver. So, I was so lucky to find someone who was about our age and who liked to dress in shiny clothes, which my mother liked, and who drove a nice car and was someone that my mother would definitely choose to spend time with. And that was such a blessing for the amount of time that she was there. We would still have to go and you know, say, “Hey, you know, this person's coming to get you and we're going to go here”. She also drove very comfortably across the highways and that kind of thing. So, she was a real blessing to us. Mom enjoyed her company. She became Mom's friend and she was a solution for us at that time, you know. It took us three tries to get there, but we found what worked for her and made Mom happy.
Allan: Oh, how cool would that be if that whole industry got disrupted and suddenly, no disrespect to the wonderful people who already work in this industry, but what if helping care for the elderly was one of the ways Millennials and Gen Z could find good careers and they wanted to do that? And that became this cool thing where that youthful energy and enthusiasm and sense of style and treating an older person as a friend and a buddy, and just the whole tone and attitude of that feels so, so much less depressing.
Boni: Yeah, it would be amazing. And she loved it too. The caregiver was really happy with it. And it also gave her insight with her own parents and how to manage. We talked a lot about how, in her own situation, our situation, we were a little bit ahead of her with her with her parents, and it was just… it was wonderful all the way around. I mean, it was really nice.
Poli: I would say the one thing with that last. caregiver was, who was uniformly fabulous, was that she didn't really drive out to Mom's house very much. It was mostly, you were the way station Boni.
Poli: And so that was again this geographically being spread out, the way we were, and not that spread out. But it meant that we needed a you know, and I think Trissi, maybe we did some changeovers there. So, one of us would still often have to drive Mom the rest of the way. But at this point, Boni, she was increasingly not staying in her own house. We had almost completely stopped her staying overnight at her house, and she was almost living with you. And then when this caregiver, the third caregiver would come get Mom, it would get her out of your house to do some things. We had set up a day program for Mom, which was great, and we'll talk about that in another episode. I remember that she would, this third caregiver, would take Mom to the mall on a rainy day and just have her walk around, which was Mom loved it. You know, Mom likes to go shopping and look around, but doesn't really have the patience to do it with us.
Allan: She likes inertia. She likes being in motion. The movement, being somewhere and walking around has always been a good thing. And stick her in a car and she can be just somewhere in between where she was and where she was going. And those are some good moments with her.
Boni: Yeah, and a purpose. She likes to have a purpose when she goes. Like why am I here?
Poli: So do I! I think you know. So, I think what we see here is the progression it takes Mom increasingly needing more care and us trying to cobble things together and finding people to fit in that care puzzle that we had.
Boni: And I think, you know, looking back on it, we originally were looking for medical care or someone with medical experience, and that really wasn't what we needed yet. We needed companion care, driving and some insight. And everybody had taught us something. That is the thing. I think a big piece of it is that we needed to learn, we needed to wrap our arms around the next step. We were making these decisions for my mother, for our mother that were not things that she was ever going to readily accept. So, to have someone give us a little bit of a guideline to go by and something to assuage or guilt a little bit, along with helping us with the day to day tasks of getting her from one place to another.
Poli: You know, I remember early on when we started going to the Georgetown Memory Disorders Program, I talked to one of the nurses who was in charge there, really knowledgeable about Alzheimer's, and I said, “How long do you think we have? How long can our mom live on her own”? And she said, “You know, I think maybe a year, you know, it's not going to. You have to start preparing now. You got to be ready”. But Mom, it was three years before. She just, I guess every person progresses differently with Alzheimer's and Mom again, very physically healthy. But it was also the fact that we were getting people who, I imagine, maybe it's most people with Alzheimer's need the kind of care that perhaps that first caregiver was providing. Which they needed someone to stay overnight so they could help them go to the bathroom, make it to the bathroom, or they needed help getting dressed in the morning. Mom didn't need that. She needed help choosing clothes. She needed prompting to take a shower, but she didn't need help in the shower.
Trissi: What was interesting to me as her disease was progressing more and more, was the fact that she never would admit that she needed help. And up until that point, although I had done a lot of research on my own, the only, you know, so called person that I knew was from the movie ‘Still Alice’. And I knew in that movie that the woman admitted that she needed help. She went for a run. She realized that she didn't know where she was. She knew she needed help. She asked her family for help. She continued doing that. She was always able to admit that she had this disease. And one of the things that I find fascinating still with Mom is that she seems to be unaware, you know, during the day that she needs help. Completely unaware. She won't admit it, she does get angry, she does get defensive when you suggest it. So Poli you said, you know, people progress very differently with Alzheimer's. That's true. I mean, you don't know.
Boni: I think that's a hallmark of Mom and, you know, I've said many times she's still herself. And so, she's always been, as we said in the beginning, fiercely independent and adamant that she can take care of herself and in the face of everything, she's gonna still now say, “I live alone, and I take care of myself”. And so, you know, that's I think something that people don't know so much about Alzheimer's is that they are still the same kind of a person. When you ask them a specific question, they're likely to answer the same way that they would have answered in the last 20 or 50 or 70 years. But, and that's our mother. And certainly, I think it would have been easier if she had said, “Hey, you know, I'm noticing some decline” and been involved in her own care willingly, and she just, that’s not our mom. She's gonna, in the face of everything, steadfastly say that she's fine and can take care of herself.
Trissi: Except I don't, you know, I don't know. That's what I struggle with, does she not know? I mean, sometimes I really think she does not know. Or does she just not want to admit it? A lot of people that have Alzheimer’s will say, “I know I have Alzheimer's”. I don’t think Mom knows she has Alzheimer’s.
Boni: Yeah, well, I think it's both, you know? I mean, she has said there's something wrong with my brain or whatever, but I agree. I do agree with you too, Trissi that she would if you asked her she would never say that she has Alzheimer’s or believe it.
Allan: I think we'll be talking about this a lot in our next episode as well, which is gonna be about when we finally decided to move our mom out of her house and tried to experiment moving her into some of your homes for a while and how that went. So this caregiver story of outside caregivers that we brought in is just one tough part of the overall journey. There was no real thrilling conclusion, positive or negative. It was just something that we tried as we learned what this was all about, kind of on the fly and through the stories of others. So, for those going through this right now, we hope that our story provides some guidance and comfort. We’re 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.