Episode 1 - Alzheimer's: From Kids to Caregivers

Transcript for Episode 1 - Alzheimer's: From Kids to Caregivers

Allan: Tens of millions of families with Alzheimer's disease and dementia all over the world, including our family. We are Alz In The Fam. I'm Allan Fair.

Poli: And I'm Poli Fair Noyes. We're siblings, we’re parents, but we're also care givers.

Allan: This is our podcast. This is our support group. Welcome to our family. Alzheimer's sucks, but this family lives, laughs and learns as we fight for a cure. Welcome. Hey, Poli.

Poli: Hey, Allan. Allan: Welcome Alz in The Family. You and I are brother and sister and we created this podcast because we in fact, have Alzheimer's in our family. That's right. So our mother, Carmen, was diagnosed with the disease in 2013 following a pretty rapid decline in her mental acuity. So for this first episode, which we're calling from kids to caregivers, we're gonna tell you about our mother specifically through the lens of her early symptoms. And that moment when we knew we weren't just her kids anymore, we had to be her caretakers too. But before we do, let's introduce ourselves and share what we both individually and collectively hope to get out of starting this podcast.

Poli: Yes. So I'm Poli. I’m the oldest. I'm married, I've got two kids and I have gone back to work. And on top of all that, I'm the caretaker for our mom, along with my sisters and Allan.

Allan: That's right.

Poli: And so my goal for this podcast is to talk about when we first realize our mom was really on this Alzheimer's journey, losing her memory, and we didn't know what to do. So this story is about how we came together as a family to care for her and where we got the information we needed to do the right thing because we really didn't know what to do. We didn't have things figured out.

Allan: Right, and I think there's so much from our journey as we think about the mental health freight train that our country in the U. S. is on, as well as the entire world. The number of Alzheimer's and dementia related cases are just predicted to continue to skyrocket between now and the year 2050. So, I think part of our hope is as other people who are in our age group, I'm in my mid-forties, your your older let's just say, but are everyone's parents are gonna be aging soon, and a lot of them are gonna have these types of illnesses. So we created this podcast, not only to commiserate in our own journey, but maybe there's some things that we could say that might be useful for you as a listener, whether you're suffering from any sort of dementia or mental illness or you’re kids, that might be on the road to being caregivers as well.

Poli: Yeah, right. So that's absolutely true, because I remember when my mom first started getting sick when our mom first started getting sick, it was such a great help if one other person would talk to me and tell me something they had seen in their grandmother or mother, um, any little tip. I remember early times when I'd be like, I think something's wrong with my mom, and a friend would say oh, yeah, you know, my grandmother had that, and this is one thing that happened. So, we're here to share.

Allan: Absolutely. So, uh, I'll introduce myself as well. So, my name is Allan Fair, and I'm the not only the younger brother, but the youngest in the family of our siblings. I'm also a parent. I have two kids age 10 and seven. My wife and I both work, both have really wonderful careers that that we enjoy. So, um, being a caretaker is another layer of responsibility that, that our whole family deals with and that I certainly deal with as well. So when I got excited about the idea of starting this podcast for me, I think the journey of dealing with a loved one with Alzheimer's is a lonely one, even for us who have each other. I think we have moments of loneliness, and so what I hope to expand is a community for others out there who feel alone in their journey with Alzheimer's or other forms of mental health. We want this to be a place to hang, um, and be with some people who share the same hopes and fears because right now we're looking at a future where there's no cure for this right now, so let's be in it together. We hope to find people all over the world who want to share stories and listen and go on this ride together and help find a cure.

Poli: Absolutely. And I do think one of the biggest problems with Alzheimer - some of the most profound victims are the caregivers who are stuck with social isolation like you mentioned, um, loneliness. So, yeah, we want to be a community for those people that are stuck.

Allan: Agreed. Just listening to you say that, um, we really feel a connection with other people that go through what we go through. Being a caregiver is just such an unsung, unnoticed, act of courage to those who aren't on the radar. So, I think this is a podcast not only for those that maybe suffer from the disease, but really, for the caregivers and the soon to be caregivers.

Poli: Yeah. Or for the people just seeing signs and wondering what's going on. Um, we really hope to just, you know, build a community and help each other.

Allan: That's right. So, let's talk about our mom a little bit. Her name's Carmen. Um and gosh, what a what a wonderful mom she is. And unfortunately, I hate to say it this way, but what a wonderful mom she was. Tell us about her.

Poli: Yes. Oh, mom. She grew up in Puerto Rico and came to the United States just on a sightseeing trip, got a job at the Inter-American Development Bank and you know, built a whole new life. Um, as a mom, she was amazing when we were growing up. She drove three kids to school every day for 12 years, picked us up. I never remember being late. you know, typical of seventies housewives - three meals a day, you know, and just wonderful. Um, she never couldn't do anything. And she did a lot of it alone because our dad was often absent or perhaps angry in his later years, but she was amazing.

Allan: Yeah, I'm sure we'll go deeper on dad's part in this, but safe to say he was largely out of the picture. Um, certainly by the time I was born. I'm almost 12 years younger than Poli. So, I was born in 75. By 1980 dad was kind of out of the out of the picture at that point. So really, we were raised by our mom.

Poli: We really were, especially you. I mean, I don't think you and even Trissi who's our younger sister, who is four years younger than me, saw many good times with, uh, dad. But Mom, I mean, I never missed that. I never missed having a second parent around because, Mom, really, she did it all. I don't know how she did it. Being from the lens of being a mom now, yeah.

Allan: My biggest memory, or when I try and articulate, try to crystallize what it is that I most appreciate about mom is that she was always present.

Poli: That’s exactly what I say. Yeah, she was just there, in big ways and small ways. But it's amazing that at a time where there were no answering machines or, um, cell phones, it seemed like I could call her. And she was just always there. If in person, she was always present and there.

Allan: Sure. Well, even after you had gotten married, um, I was still I was maybe 11 or so when, uh, when you got married so still pretty young. And so, by the time I was a teenager, it was just mom and I growing up and every day, she would make dinner. Would sit and eat with me while I ate. I don't think as a teenager, you appreciate how much it's a gift that your parent is just there and wants to hang out with you.

Poli: And by that time it was after working a full time job, driving a sort of hellish commutes to and from to get you back and forth to where you needed to go. Um, yeah, it's pretty amazing. You appreciate it when you get older, don't you?

Allan: You can, you really do. And another thing that I really appreciate about Mom, which in some ways may have contributed to Alzheimer's, is that when Mom and Dad's marriage didn't work out, she didn't seem to have any interest whatsoever in starting a new social life, a new dating life. She really went full on 100% in on raising her kids, and that's what she wanted. And I think as a result, she had friends. But I wouldn't describe her social life as robust, and..

Poli: She devoted herself to her kids. That's where she spent her time, her energy. Later, her grandkids, but there was no dating scene for her. There was no making new friends except at work. Um, really.

Allan: Right. So, throughout many episodes, we will talk about mom and the type of person she was, but ah, very present, great mother. And so, let's talk about what we pinpoint is maybe a little over 10 years ago. And when things started to change a little bit.

Poli: Yes. Oh, um, Trissi, the youngest of the sisters in our family, she had a lake house she bought. And I think she bought that in probably 2003, around then, and we would, we were traveling there as a family. In fact, we celebrated Mom's 70th birthday there. Had a big party, all the family together, which was my mom's favorite thing, to be with her, surrounded by her children and some of her grandkids at that point.

Allan: Right so this would have been 2006. Mom was born in 1936 and she just turned 84 a few days ago. We celebrated her 84th birthday yesterday.

Poli: Exactly. So, we went down. We had a great party. We had her favorite coconut cake, and then a year later, she had no recollection that she’d ever been there. Um, a couple months after that, we mentioned going again and she said Trissi has a lake house? And then Allan had a child, Marko, who we all love, and we visited. I took my mom to visit in New York, and there was a new baby to see. She was thrilled. She held him. She loved him. She heard stories about him every day. And then when Allan was coming to visit, she just completely blew him off. It was… Allan showed up at her house after a long drive, and, ah, she wasn't there after talking to her and planning it for weeks. And, ah, I knew at the time that there's no way she would miss a chance to see her son and her grandson, But he would. You know, I think, Allan, you had a different perspective.

Allan: I did. It’s amazing because I grew up being the youngest. So, there are four of us siblings who I predict everyone will get to know over time, uh who listens to this podcast. But… so, yeah, that that incident really sticks out to me, too. Because as the youngest sibling, I got to watch my older siblings and being, 12, 10, and eight years younger, I got to see all of your cycle of life milestones happen and assume that those milestones would be similar for my own. I saw all three of you get married. Oh, one day I'll get married. I saw all three of you become parents. Oh, one day I'll be a parent and I saw Mom's relationship to all of these things as well. So, Mom was an absolutely wonderful grandmother. Still is to all of our kids and mom was very involved when your kids were first born as well.

Poli: Absolutely. When my kids were born, I was working and Mom retired from her job and cared for my kids, while I was at work, but she was so much more than that. I would often come home and find her dancing with Alex and carrying Jack around, my young kids at the time, and so involved and would never miss a thing. Not a birthday party, not any small, tiny event… lost a first tooth. She traveled to the beach with us, often to hang out and just enjoy the kids and teach them how much fun the beach could be. Um, but she started to lose her ability to really care for the kids, and I think we eventually talked to Allan about that, like, I don't think she can take care of your kids. Which must have really been difficult for you, Allan.

Allan: Sure. So, being the youngest and watching her be a grandmother to this first wave of grandchildren before my kids. Just such a wonderful grandmother. I described if I had to crystallize her as a mother, it was her presence. If I had to just crystalize a description of her as a grandmother - just constant love. I mean, if there's anything she wants our kids, her grandchildren to know is how much she loves them, that's even now.

Poli: Love and joy. Joy at the simple things, really.

Allan: Just enjoyed the hell out of these kids. Yeah. Um, so by the time my kids came around, so your son Alex is what, 23?

Poli: She's 24 now.

Allan: 24. Okay, so my son, my oldest son, Marko, is 10 and a half, and my daughter Ava is seven. Um, so Poli's two kids are the oldest of the children in our family, and mine are the youngest. And so, the difference is 14 years apart.

Poli: The space of those 14 years, Mom went from someone who could do everything, could drive to and from her house to my house almost every day, to being unable to remember to keep an appointment with the people she loved the most. Not an appointment, but a visit.

Allan: So here I am. I'm a new parent, and my experience with my mother as a grandmother has been through her other grandkids. And I'm so excited for my first-born son to receive the same kind of love and attention that I saw, the other grandkids get. So, in this particular incident when I got to her house and the idea was that Marko was going to stay overnight at her house. And I'm sure for anyone that has kids the idea “Oh my gosh, overnight at grandma’s!” so, how great for the grandchild. But also, for the parents that got a little time away too.

Poli: My kids had enjoyed that, and our sister's kids had enjoyed that.

Allan: Everybody win.

Poli: It was time for Marko to come and have fun, too.

Allan: Sure, so I pull up in her driveway and her car is not there. She's not there.

Poli: House is locked. And you’re there with your young son.

Allan: That's right. The locks changed years after I had moved out. I didn't have a key and I couldn't reach her. And she had a cell phone at the time.

Poli: She may not have had a cell phone at that time.

Allan: Yes, she was.

Poli: Even if she did it turns out she went to get her hair done right and, uh, drove herself and she was still able to do that. But completely forgot that she chose the exact hour in time that you were coming into town.

Allan: Right and so this is one of my first, a catalyst to one of my first learnings about Alzheimer's and dementia. The way I felt about this was a betrayal on Mom's part. Mom, how could you? What, is it because I am the one that moved out of the area where we grew up? Am I the black sheep of the family? It felt like she loved my kid less than the other grandchildren. So, you know, a really deep type of hurt.

Poli: Right. I think Mom really felt the loss of her kids when they went away anyway. And the loss of being close to her grandkids. And so, I think perhaps you interpreted that as she was angry at you, but, um, what I saw was that she wasn't angry at you, she was feeling that loss and would have definitely been there for you if she'd realized it. So that was a big moment when I think both of us, eventually for you. But at the time, I thought, there's something really wrong with Mom. There's no way she would miss Allan. There's no way she would miss a chance to hang out with anyone of her grandkids for one minute. She would have made sure she was there.

Allan: Right. So, something that I also think we'll talk about in future episodes is that my father in law has dementia as well, and his own has only really begun to manifest in recent years. So, I have just a little bit of, for lack of a better word, wisdom and experience in this, and I see the impatience and resentment that that side of my family is going through as they learn to cope with it. And that's exactly how I felt. I felt angry and resentful at how my mom could have for gotten this important date where we were coming to visit, and she was gonna have an overnight visit with Marko. And so, a big learning from that, what I now know is people with dementia, they're losing these neurons in their in their brain. And unfortunately, it's a manifestation of the disease that it's really hard at first when you don't understand why it's happening to not take personally right.

Poli: Well, I do think and we're gonna talk about this in later episodes, but, the first sign in Alzheimer's really is that loss of memory. You don't start to see the confusion or some of the other signs until later, but that loss of short-term memory for things that are really important is shocking. And, of course, if you told my mom at the time that she missed it, she missed something, an appointment or anything, she felt like, no, that's not true. She couldn't remember that she didn't remember.

Allan: Right. So, it's tough. Any other incidents that come to mind?

Poli: Yeah. So, around the same time when Marko was perhaps even younger, your child was even younger, Mom got sick. She had a yeast infection, which apparently is common at that age. But we didn't know at the time because we didn't know anyone that age. And she went to the doctor and got some medicine to take and took this Diflucan is the name of the medicine she took. And then she, I didn't even know she’d gone to the doctor, this wasn't something she was telling me, but she called me one day and said something happened to my brain. I went crazy. I was outside in the street, in my pajamas. I don't know what's going on. It's crazy. My brain. Something happened. And she continued for a couple weeks to say this medicine I took, took part of my brain. And it wasn't until years later talking to a primary care doctor with her when we were having her tested for Alzheimer's, when she told the story and she didn't remember. She just said, oh, I took medicine that took part of my brain. I told the doctor and she said that medicine can have an effect. Now, years later, I'm wondering if perhaps it was actually something, she took for itching that did it, because all like Benadryl is known to cause confusion, agitation and a kind of dementia in people who are older. Anyone, if you are, I took it, it might start to bother us.

Allan: Sure. Worth mentioning is that we're not medical experts. So, when we say Benadryl is known to cause it or Diflucan or any of these things we were just expressing an opinion. And I don't think we are, um, anti-drug or pharmaceutical, nor are we making any claims that this was the cause. We're just describing some stories with some details.

Poli: Right, similar to lots of medicines that say don't operate heavy machinery while you're taking them, this is the same kind of a thing. It was just probably the state of mom's brain at the time that she couldn't handle the medication, and we were not aware, her doctor was not aware. This was very early on, but she kept saying, this medicine took my brain.

Allan: It was very dramatic. She could very dramatically articulate that I took this medicine and it’s like, something went off in my brain, and I just don't know and she would… she told me a story during this, that during this period: I was lying in bed and, you know, I was hearing the sounds of the furnace, which in this old house built in 1969 where we grew up, you could hear the sound of the furnace and I remember being…

Poli: But pointing out, since 1969, that furnace had been making that same sound.

Allan: And maybe even she could, even she knew that at the time, but now she was hearing things within it and was convinced there was someone in the house. So, she knew that something wasn't right in her in her brain. So…

Poli: I mean, and that's one of the saddest things. Is this awareness that something’s not right. And she was looking for something to blame it on, and she decided it had to have been the incident with the medicine. And that is probably not the cause, but it was an effect probably of her increasing dementia.

Allan: Right. So we're gonna be talking about this a lot of specific elements about our mother's life and disease and figured in the final segment of the first episode, let's talk a little bit about how our lives are different and how our families air different as a result of having Alzheimer's in our family. So how do you personally feel different and affected by Mom's diagnosis Poli?

Poli: So I think when you get to the age that I was when, um, when Mom was really starting to be affected by Alzheimer's, you're starting to see the finish line of the really busy, busy parts of your life. So, my kids were heading off to college, or at least in high school, they were getting their driver's license. And suddenly we, you know, you plan for your kids to go to college. Suddenly, we had no idea what to do about Mom. She, it was clear that she couldn't stay by herself in that big house anymore. She couldn't really handle it. It was clear that she absolutely did not want to move out of her house. and I really felt a sense of for the first time in a long time since maybe I had babies: I don't know what to do. And this is where I really turned for strength to my family, to my sisters, my brother and we had family meetings. What are we going to do about Mom? How are we gonna take care of her? I was driving well, probably an hour and 20 minutes or longer round trip to bring her food every day. Or at least a few times a day. She couldn't really be alone. She wouldn’t eat, we had to kind of take her car keys away from her. All that. So, my life changed, and it's very socially isolating. Eventually she came to live with me for a while. Um and I remember when, not one time, many times thinking I need to take a shower. So, we get mom all squared away and I would run to jump in the shower and when I came out, she was gone. Just had walked out the door.

Allan: Right. That's a symptom that she still has to this day. Just yesterday we were at our sister Bonnie's house. It was to celebrate Mom's 84th birthday and my two children were jumping on this trampoline that's in the backyard. Along with another one of the grandsons and she just wanders off.

Poli: Yeah, she does, wandering a typical Alzheimer sign. But really, she's still very healthy, you know. She can walk a long way. One time in my house, I came out of the shower wet hair, threw on some clothes and had to run down the street. I live in more of a city environment than she's used to. She was two miles away, and luckily she had brought the phone by this time, the phone I got with her and I had her wearing and watch that could track where she was and I was able to find her, but it took a while to catch up to her.

Allan: I think that's something that she instinctively knows is that exercise is good for her brain. I think that she feels the benefit or there's still something in her body that's letting her know - I need to give my brain oxygen, I need to exercise my brain because she was always fairly healthy in diet, overall lifestyle again, she didn't have a very robust social life, so she wasn't out exposed to a lot of elements. But as she got older particularly after I graduated high school, I never moved back home or into the area. A lot of walking that to this day.

Poli: She always liked to walk. And I even remember we were younger; she would put you in the stroller and walk around the neighborhood with some of her friends. And then as we all moved out, she was, she would shovel the snow on her driveway, it’s a big, long driveway. But she, and I would say, we’ll come over and do that and she'd be like, no I like it, I like the exercise. As she started fading into dementia, she really, um she really bought into walking all the time and she would kind of measure oh, I walked up to the the entrance of our neighborhood five times today and who knows how many times she really did? And it also helped her sleep. She did, and I think I believe this can be common with people with dementia, she had trouble sleeping a lot and walking helped her.

Allan: Yeah, that's right. Well, as I think about how I'm different, I have definitely gone on a journey over the last 10 years where now every little memory slip that I have, I have this sort of fear of oh, no, this is the beginning of my own and descent into it. Um, so I find myself really being passionate about all things mental health, including my own. So, it's interesting. Mom did so many things right. She had a pretty good diet. She kept pretty thin. She's only overweight now as the result…

Poli: Not remembering she ate before. Yeah.

Allan: Sure. I really think and again, something to go deep on at another time. But if you remove the fact that she didn't continually stimulate her life with new, really interesting experiences, she really just made a choice to become a creature of habit and not travel a lot, not date anymore after the dissolution of her marriage and so forth. So sometimes I struggle with these moments from like jeez, what more can I do? You know, I have my two tablespoons of coconut oil a day and, you know, eat my leafy greens and, you know, try and exercises as best as you can. But there's this creeping fear that I have to manage and kind of keep track of and check in with myself.

Poli: Yeah, absolutely. As the oldest, I feel that all the time. I think if the next person to go in our family, I feel like it will be me because I’m the oldest and…

Allan: Hope not!

Poli: No, I hope not, too. I'm doing everything I can, but it is, um it's not a comfort that we realize our mom did almost everything right. She didn't smoke. She wasn't obese and middle age or any of the risk factors they say. She even, you might say she wasn't really social, as you know, going out with boyfriends or going out with girlfriends. But she was constantly involved with her family. I mean, I talked to her on the phone every day when she could still talk on the phone. Always a part of our lives and the neighborhood she lived in.

Allan: Very true. Well, I think we've just made our first episode of Alz In The Fam Poli!

Poli: All right, that's awesome.

Allan: How do you think we did?

Poli: I think we did okay. You better than me.

Allan: Well, no I think we'll only get better.

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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