Embracing the Challenges: Stories of Hope with Jennifer Fink

The challenges of Alzheimer's care can be complicated, but our engaging conversation with Jennifer Fink will shed some light on this often daunting journey. Hear her heartwarming and sometimes hilarious tales of caring for her mom, including the mystery of the black sports bra. Fink, a beacon of support in the Alzheimer’s community through her podcast, Fading Memories, opens up about the difficulties and joys of her caregiving season.

As we laugh with Jennifer over the wardrobe fiascos, we also tackle the tough topics. Staff at facilities, mischievous residents, and the overall unpredictability of Alzheimer's – it's all part of the caregiving package. Jennifer shares her recipe for surviving and even thriving in the face of these challenges: a dash of humor, a dollop of grace, and a whole lot of resilience.

We round off our conversation exploring the lessons learned and the silver linings found in the cloud of Alzheimer's care. Jennifer insists on finding joy amidst the rollercoaster of emotions, cherishing the small moments of beauty and comfort. She leaves us with her hopeful outlook on life, a mantra of positivity that will undoubtedly resonate with listeners. Tune in for a unique blend of heartwarming stories, laughs, and perhaps even a few tears. You won’t want to miss this insightful episode.

Transcript

[00:00:00] Rayna Neises: Welcome to A Season of Caring Podcast. This is Rayna Neises, your host, where we share stories of hope for family caregivers, breaking through the busyness and loneliness to see God even in this season of life. Today, I'm excited to introduce you to Jennifer Fink. Enduring three generations of a family with Alzheimer's, including 20 years with her mom, Jennifer became determined to prevent the disease in herself and help other caregivers. However, research and reading books by others should have addressed the gamut of questions. She was determined to add her experience to what was already available. So she started The Fading Memories Podcast. Jennifer brings her experience to the public with a passion for helping others navigate a similar journey, avoid one for themselves, and to be a knowledgeable friend that people can turn to when they need support.

[00:00:53] Welcome, Jennifer. It's good to have you here today.

[00:00:55] Jennifer Fink: Thanks for having me.

[00:00:57] Rayna Neises: So I read in your intro that you have multiple generations. So tell us a little bit about those people that you've helped to care for.

[00:01:06] Jennifer Fink: I was primarily responsible for my mom for the last three years of her life after my dad passed. I did not do too much hands on with my maternal grandmother, probably because my mom didn't do a lot of hands on with her mom. And then my maternal great grandmother also had what they called back in the day, senile dementia, but she died before I was born. So no responsibility there.

[00:01:31] Rayna Neises: So your mom's journey was a long one with Alzheimer's and so definitely what, what would you say was one of the most challenging things in helping to oversee her care?

[00:01:41] Jennifer Fink: Well, my dad did not accept help from me when it was obvious that, you know, he needed, he needed a lot more support. I'm assuming that, you know, it was gender and generational norms that kind of made him feel like he had to do it all. His own health was not great. He was diabetic. He had a lot of health issues and he had like zero patients with my mom, which definitely did not make taking care of her any easier.

[00:02:11] She was already a challenge because she was a very independent woman. She would think about a project like repainting the family room or changing the curtains or something like that. And she would basically plan out the whole process in her head and then announce that she was going to do this. So my dad. Not realizing that she had been planning and processing and, doing all the heavy lifting mentally, it just sounded like this stuff came out of the blue. But she never let that stop her, but yeah, he did not have a lot of patience and it was. It was a challenge because it's like, I'm trying to help you.

[00:02:44] Shouldn't have to do all of this yourself, but he just, he just refused. So after he passed away, I mean, I knew how bad she was getting, but when I didn't have him as a buffer. It was like, Oh my gosh, like I don't know how to talk to this woman. And she's asking me the same question over and over every two minutes.

[00:03:04] And, you know, I, I, I got a business to run. I got things to do. I really don't have time to sit here and just repeat myself every two minutes. So, you know, but we all, we've all gone through that. So that was just. That was kind of the catalyst to, I read the books that were available in early 2017, and I did deep internet research, and tried all of the things, the reminiscence therapies, and they all flopped spectacularly.

[00:03:32] If you could get an F minus, we got an F minus on all those things, and I thought, I can't be the only family caregiver who needs this advice. And then one day, as I was driving a car to a gymnasium for classes, as we used to do in the old days I was like, ah, duh, I should look for a podcast on caregiving.

[00:03:54] And at that point, there was one that I could find. I don't know if there was others. I know there's a lot more now and for better or worse, it wasn't my cup of tea. And so I thought, well, my husband's been in real estate for 20 years. We'd talked on and off about starting a podcast for his company.

[00:04:10] I'm also a retired portrait photographer. We did kind of talk about a podcast for that, but that's pretty visual. I don't really know how we would have done that, which is probably why we never did. So I just decided, you know, family caregivers don't have time for reading books and deep internet research and then get an F minus on the outcome. So I decided to start my own podcast.

[00:04:32] Rayna Neises: My mom was diagnosed in 86 and my dad was her primary caregiver. He ended up retiring early from his job and staying home to take care of her. And she was at home the full 12 years, but he was open to having help during the day. And so he brought a caregiver in during the day, but it was funny because he got her up and showered and dressed and fed her breakfast. And then he would come home and cook. And I was like, and he didn't really, that wasn't his thing. He was a, he was a financial guy. You know, it wasn't like he learned to do more after he retired and stayed home with her. But it was interesting because he really did have a hard time letting go of those things. He felt like he should be the one to do those things. And I lived away during part of that time. And I would come home and be like, go somewhere, you know, go. He played softball with seniors and he played in the senior Olympics and would travel around. So it'd be like, go play ball and I'll stay here and take care of her for a week. That was his respite was those kinds of things, but man, it was tough. 

[00:05:32] And like you said, there was just so little information and. I love that, like, once my mom passed away, my dad actually was one of the 1 800 number people for the Alzheimer's Association in the Kansas City area, just offering support, not because he was, you know, all the education they have now, they didn't have that when they first started, but it is hard. There was so little support that I love that you just jumped in there and started offering that opportunity for anybody. So what you couldn't find you made. That's

[00:06:02] Jennifer Fink: And I've talked to lots of caregivers that have done exactly that. I'm always amazed at the number of caregivers who either while they're still caregiving or after their person passes, they're like, this is what I needed. So I'm going to create it. There is absolutely no shame in saying, thank goodness that's over, I'm going to go party in Tahiti or whatever, you know, people, people want to do, start a business trying to help other caregivers is generally not what one would do after the death of their loved one. But there's so many of us that have done that or we do it, you know, while we're caring. To me, it's so heartwarming. And when I started the podcast, social media was a little bit younger than it is now. And you did not share your loved one online the way people do now.

[00:06:51] And it took me a while to get accustomed to that . We've got millennials that are caregivers and they're sharing everything about all their daily life. And, you know, my mom's been gone while these guys are doing all that. Then we've got the older generation that are just horrified and I'm in the middle of going, well, I can see from both sides, which is a thing my dad used to say. Well, what did they always, so my dad was a Gemini and he would always say, well, I'm of two minds of that. And it's like, yeah, you think,

[00:07:21] Rayna Neises: I totally agree because I do think that it's helpful for people to see the reality of it because so we don't see it. We just don't see it. And when we do, we don't really know how to interact. Or I just remember the number of times, especially with my mom in public. It just was really hard because people just didn't understand and they would kind of look at you like you were being mean when you were actually trying to navigate for and help her.

[00:07:49] The more we can get the word out, the more beneficial it is. But I agree. I'm not sure that my family or my parents would have wanted to be, you know, Tik TOK stars or whatever. So do you have one memory you'd like to share with us?

[00:08:05] Jennifer Fink: So one of my funniest memories with mom. So my mom, because she had Alzheimer's for 20 years, she was very, I want to have way more clothes than anybody needs, but a lot of them were, you know, old as in not worn out or anything, but they were too big and the further she got in the disease, the more she went back to the clothes from the nineties and the early aughts.

[00:08:31] Rayna Neises: yeah.

[00:08:31] Jennifer Fink: Heaven forbid you tried to buy her something new that fit. And maybe it looked good on her because she didn't recognize it as hers. So we were leaving the memory care residence one afternoon and she's wearing a blouse that's probably two sizes too big and pants that she's got the waistband rolled down like three times. I would really like to dress her nicer, but I'm not going to fight with her about it. So that's fine. And as we're steps from the door, her blouse slides off of her shoulder and I glanced over and it was like, I wonder whose black sports bra that is that you're wearing.

[00:09:05] Cause it is not your, you know, and in that moment, you have to make the decision. Do you just roll with it or do you freak out because one my mom, I don't think she ever had black bras. She definitely never had sports bras. So I knew for certain it was not hers. And, you know, there's a part of you that's kind of like, ew,

[00:09:27] Rayna Neises: Mm-hmm.

[00:09:28] Jennifer Fink: but she was clean. She was properly dressed. We were headed out to do something fun, get nails done or go get ice cream or whatever. I'm like, just roll with

[00:09:38] Rayna Neises: Yep.

[00:09:40] Jennifer Fink: And I still have this to this day. I have no idea who's black sports bra that is, he had a friend in memory care who got really super paranoid and her daughters moved her out and they had like the kitchen trash bag size bags. I mean, like almost a dozen of them and they, all of those were clothes that weren't hers.

[00:10:05] Rayna Neises: Oh my gosh. Mm-hmm.

[00:10:07] Jennifer Fink: So the, Memory Care Director, she's like. If your mom's missing anything, you might want to look through that. She's like, you know what? You might want to just look through there anyway. And I'm like, Okay. And I'm thinking I might as well look through this because this is a lot of stuff to deal with.

[00:10:20] And yeah, there was some stuff on my mom's in there, but it was just like, you know, you just had to kind of get over some of those lack of personal space.

[00:10:30] Rayna Neises: Yeah. would be so challenging. I would hate to be in charge of the, I, I don't love laundry anyway. I am not sure I know anybody that does , but to think about doing that many residents laundry, it, it is a little mind blowing, but it also is a little. More than a little frustrating how hard it is to keep track of their things and not end up with other people's things. I think that has to be a constant challenge.

[00:10:53] Jennifer Fink: Yeah. We'd write like either her initials or her room number or both on tags. I remember using a Sharpie on a tag on a light colored shirt and it bled right through. And I thought, well, this is, I just bought this shirt and I've kind of wrecked it, but I'm like, well, in the back, nobody's really going to see . But it was just like, even with all of that, I just, yeah, it was, I think what they needed was.

[00:11:16] More washers and dryers and like one person that was in charge of today we're doing this section and then, it was her memory care was basically a square with the courtyard in the middle. So they could have done like the West Wing, the South Wing, the East Wing, the North Wing, and then, then done bedding or something.

[00:11:38] But I think they only had like two washers and two dryers for 32 or four people. And then of course the residents, like my mom would hang at my, my mom thrived in memory care. And so my mom's name was Diane. She befriended other Diane and they befriended other, other Diane. As if it's not complicated enough to keep track of everything, they had all the same name

[00:12:02] Rayna Neises: Yes.

[00:12:02] Jennifer Fink: And my mom and other Diane, they got into mischief. Nothing bad. But my mom had her dog for the first 18 months that she lived in memory care. And then the dog became a problem. She wasn't really a companion to mom and they were renovating the community and putting in new carpets. We couldn't have problematic doggie and new carpet. And so we had to rehome the dog. 

[00:12:25] And the dog had stained the area rug that we had had in mom's room and my sister had bought a really cute one. It was, it was like plate sized buttons. My mom used to be a seamstress and it was smaller than the other one. So that's why we hadn't switched it out. But after the we tried cleaning the bigger one and it was just hopeless.

[00:12:47] So mom and other Diane spent an hour discussing this rug and it should not have been any surprise to me that they were talking about how it could be a wall hanging, or you could do this. I was just like. Okay. It was much more fun to listen to the two of them talk to each other. And occasionally they would, they would circle me in, but most of the time I was just kind of like a fly on the wall and it was, it was much lighter visits when I could spend it with both of them, which almost makes no sense,

[00:13:18] Rayna Neises: right. No, I get it.

[00:13:19] Jennifer Fink: yeah, the next week I show up and mom's rug is gone and I'm like, anybody have any idea where mom's rug is? And so the director, she's like. When they go, when we get them seated for dinner, we'll go look another Diane's room. There it was rolled up and shoved in the corner. I'm like, Why did we do this? This makes no sense. It was just the way life was. And you could either laugh at it or just pull out your hair out of frustration. And I tried to laugh at it, but there was just times it was just like, why? Like, I really wish I understood what was going on in their minds.

[00:13:52] Rayna Neises: I think so much of it is definitely just that growth experience to just learn to let go. I think parenthood, you have a tendency to kind of hold on tight to things and the older they get, you have to let go, but then your parents really make you like learning to just go with the flow and, and to really weigh how important is this? Is this really that big of a deal because it can turn into not pretty, pretty easily if you don't just go with the flow. So what's one thing that surprised you most about

[00:14:24] Jennifer Fink: How the medical profession really did not respect, your medical power of attorneys, or your time. I didn't really have a lot of love for the medical profession, but having to deal with them and my mom, and, that was terrible. What kind of really surprised me is how you could...

[00:14:42] Grow past things like my mom, was not ever super cooperative with showers. And at one point I noticed that she was every Monday when I was visiting, she's wearing the same thing. So I finally, after the third week, I'm like, is mom giving you a hard time about changing? And like, Oh yes. And she's really been a problem for showers ever since we switched to the afternoon.

[00:15:04] I was there's your problem. Mom was never an afternoon shower. You got to like two o'clock in the afternoon if she'd been painting or whatever, she might, do a quick washcloth rinse and brush her teeth. And that'd be it until the next day. Cause why the heck do you take a shower in the middle of the day?

[00:15:20] So they switched her back, but it was, we were kind of in that period of everybody was a little frustrated. I had taken her to the local swimming pool and we got back early enough. They hadn't started seating people for dinner. And I thought. I should just like see if I can get her in the shower and I did and I washed her hair and I washed her down and I'm like I would never have thought that this was something I could do. I think I mentioned she thought I was her best friend so there was always that kind of formality and so I was stunned that I could manage that because I didn't think that was in my wheelhouse.

[00:15:58] Rayna Neises: caregiving? I agree. I think that was one of the things, especially I stepped into that pretty easily with my mom, but with my dad, that was one of the things right away that when I started thinking about being a hands on caregiver for him, I was like, I don't want to do that. I, that's not, I, I don't. Let's pay somebody to do that.

[00:16:17] And so we had people that came in, woke him up in the morning, got him showered and dressed and, and had breakfast. And that worked great. And of course, unless they didn't show up. So then it was my job, but so it happened occasionally, but not every time, all the time. So it is surprising the things that I think we can do.

[00:16:33] And for me, I always describe it as it just was in the moment. They just needed help. You weren't going to walk away and leave them alone and so being able to find that. Compassion to just step in and offer that. How did you find God in the middle of your caregiving season?

[00:16:48] Jennifer Fink: Just how much you could actually have compassion for like I said, I spent a lot of time with mom and one of the other Dianes. Sometimes in the community we would, all three of them would be with me. That was a little more challenging, but I would take mom and one of the Dianes out. We'd go get nails done, we'd go to the ice cream parlor, we'd go to the regional park, and I had people look at me, like, I had two heads.

[00:17:15] You took two old ladies with Alzheimer's to the regional park. Are you insane? No. And you brought them both back. Yes. The Rangers were right there. I wasn't going to leave them. I know you're kidding, but I mean the thought does cross your mind occasionally, like maybe if they just roamed off into the hills, you know, a lot of people would probably be better off, but that's not what I'm going to do.

[00:17:39] And just being able to have compassion for somebody beyond my mother that also had Alzheimer's, it got really sad when other Diane got really paranoid. I showed up one day for a visit and she's literally sitting with her arms full of her laundry and I saw it from a distance and I thought, Oh, this is a problem. And I knew the staff didn't just dump it on her and expect her to put it away or anything. You know, logical. And so I went up to her and I said, Oh, hi. I'm like, who just left you here with all this laundry? Would you like me to help you put it away? And she grabs it tighter and looks at me like I'm going to slap her around. I was like, okay. 

[00:18:18] That got really hard. Cause she just, I have not experienced other. People living with Alzheimer's that got like really paranoid because she was really paranoid and then she moved out So it was just like that was hard too because it was almost like losing another loved one because you know I've got photos of her and my mom with painted nails and sitting around shooting the breeze and I observed a lot of families that were just like I'm just here for my person I'm like don't want to deal with anybody else which I get and it's a lot

[00:18:52] Rayna Neises: I love that your mom had such a great relationship with somebody else. I think that's amazing that she was able to find a really special friend that they could have in their own realities, enjoy each other and not be so isolated in their reality.

[00:19:06] Jennifer Fink: It was people who are like, I'd never put my loved one in a place like that. I'm like, you haven't experienced what I've experienced. Was it perfect? No. And, they didn't have as real a high turnover as a lot of memory care residents do. The ones that did leave sooner rather than later, it was always a good thing

[00:19:26] Rayna Neises: You're right.

[00:19:27] Jennifer Fink: the heart for it. The ones that were there the entire time my mom was there, including when they were there after my mom passed away during COVID, it was just like, what can I do for you? Because this was just so hard. I learned watching other family members that, yes, I'm paying a lot of money for my mom to be in memory care, but I was the captain of mom's care team.

[00:19:51] The staff was not there to do stuff for me, so that was something else. We're a team here, people don't, don't be like snapping your fingers and asking the caregivers to do stuff, get something or do this or do that, or have a complaint. Cause you don't know man, you're leaving and, and you've ticked off this caregiver that's got to deal with your loved one.

[00:20:13] Not a good idea. So I, I definitely got a lot more compassion for a very large group of people that probably would not have known if my mom hadn't gotten Alzheimer's.

[00:20:24] Rayna Neises: Yeah, for sure. So what would be one thing that helps you live content, love well, or care without regret?

[00:20:31] Jennifer Fink: When my maternal grandmother, so she had a brain aneurysm that leaked for three months. And because of negative family dynamics, she hadn't talked to me for almost a year. My aunt calls and says, well, they don't think your grandmother will survive the surgery. I think in the back of my head, I must have subconsciously been aware of, nobody's taking into account the honoriness of my family. Just the sheer, stubborn will of my family. And, my aunt was asking me to like reach out the olive branch and it's like, honey, I sent her a letter at Christmas time that she sent back to me unopened. I think the olive branch needs to go the other way. And my aunt was like, but she may not survive.

[00:21:16] So I sat with myself and I thought, okay, if she does die from in the surgery. How am I gonna feel and I thought you know what I just need to get over it and it wasn't easy and nothing ever got resolved because her mind was not good. She did survive the surgery and it was at that point that I realized I must have been I was 96 or 30 So I was still kind of young, which sounds terrible these days.

[00:21:46] And it's just like, I did not want to regret, my maternal grandfather got cancer and they wanted the whole family down in San Luis Obispo for Thanksgiving. We had just bought our first home. We wanted to spend Thanksgiving in our home. You don't get the first Thanksgiving in your first home twice.

[00:22:06] Rayna Neises: Yeah.

[00:22:07] Jennifer Fink: But it was like, nope, I am not, you know, it's like, yes, I'm very upset that I can't do what I want, but I also know that if I don't go and spend Thanksgiving with my loud and obnoxious family, that I will regret it. And then you can't fix it after they're gone. So that's, I try to remember that, there's a lot of irritating things that happen every day, but if you let it bug you, it just affects you. And so I try to let things roll, which is, I think I've mellowed with age, which is great because I plan on living to be a hundred and three like my paternal grandmother.

[00:22:40] Rayna Neises: Okay.

[00:22:41] Jennifer Fink: And so it's just like you have to find the joy in every day, and people have gratitude that they do every day, which I try to do.

[00:22:49] But I also suggest to people find a reason to be proud of yourself every day. Perhaps you just managed to get through this. Horrifically terrible day and you didn't die. You didn't hurt anybody. Everybody's in one piece. Thank goodness. Or you know, you have a unfortunate incident in the bathroom and you didn't lose your mind or you managed to accomplish extra tasks today because life was going your direction.

[00:23:16] There's always something that's positive in every day. So just find that. And then, when the day goes, another day goes sideways, you're like, well, I'm glad I did the extra stuff two days ago. Cause now I'm not behind and I'm not stressed out. And it just makes everybody's life so much easier.

[00:23:33] Rayna Neises: It does. I think when we look for the good, we find more good and our brains literally do learn to seek it out. And the same thing is true. If we look for the bad, we find more and more bad. So it's all there. It's all in what we notice and pay the most attention to. I think gratitude can make such a big difference.

[00:23:52] One little nugget of truth you'd like to pass on to our listeners today.

[00:23:57] Jennifer Fink: Caregiving might last a couple of decades for you. It lasted what, from 1986 to, you know, 30 years, that's a long time. I think you had a little break, but never tell somebody, never make promises you can't keep. And don't assume that, like memory care is a horrible place.

[00:24:15] It's totally fine to want to take care of them at home, but if you get to a point where you're like, I can't do this anymore, there's absolutely no shame in finding somebody else to take over the heavy lifting. Now you're stepping aside, you're not stepping away. We need to educate ourselves on cognitive health on how to age well, how, how to maintain our brain health. It's especially important if we're caregiving, but it's important to everybody because we're all aging, you have two choices. Die young or age. 

[00:24:43] Rayna Neises: Even if you're not the caregiver, someone might end up having to take care of you if you don't take care of yourself.

[00:24:49] Jennifer Fink: exactly. You know, my mom always said, I don't want to be a burden to you. And it's like, well, guess what? She wanted to live in her home forever, but she didn't want to be a burden. Like, honey, those are mutually exclusive. And moving her to memory care was horrible. The first six weeks were horrible. And then it was like the rainbow came out in the sky and she asked me to help her with a friend.

[00:25:08] And when she said the word friend, you would have thought I'd won the jumbo lottery, which I don't play. So I was like, it's just, you can do this, but don't expect to do it all yourself because that's just not. I always tell people set up a care team, do it early and I have, you know, I know we're getting short on time, but I have, you know, it's, I have a way of doing it so that it's actually easy and I can send that to, you could add it to your show notes if you want,

[00:25:38] Rayna Neises: Sure. Yeah, definitely. And also just go ahead and let us know how they can get in touch with you.

[00:25:45] Jennifer Fink: My email is hello@fadingmemoriespodcast.Com Quick funny story, never heard of Fading Memories, anything else? Went to GoDaddy to buy the domain name, looked at the screen and went I must be really hungry. Cause That can't possibly say what I think it did. So I went and had lunch and I came back and it was like, yeah, that really does say $13, 056.

[00:26:11] Rayna Neises: Oh, no.

[00:26:11] Jennifer Fink: I'm not buying that. So it was just fading memories. I apparently it's a book and a movie and a band, and I have never seen any reference to any of that anywhere. It did not spend 13, 000 for a domain name. So that's why the domain is fadingmemoriespodcast. com.

[00:26:29] Rayna Neises: and your podcast is available on all major platforms. And you really have some great interviews with the cutting edge of research and a lot of those different scientists and things. So I enjoy the opportunity to kind of bring some of those people to every day, and just kind of learn some of the things that are going on there. So thank you for doing that.

[00:26:48] Jennifer Fink: Well, you're welcome. I find anything, you know, if it sounds. reasonably interesting, that piques my curiosity. I figure somebody else might want to know too. So sometimes I get people that might seem like they're on the fringes, but my question always is, what if we're just not looking in the right direction and these people might be the right direction? You never know.

[00:27:08] Rayna Neises: There is so much that we don't know that we can't disqualify anything and we have to be open to and, and the more creative we are, oftentimes, is how we solve the problems. So,

[00:27:20] Jennifer Fink: Yep, exactly.

[00:27:21] Rayna Neises: well, thank you, Jennifer. It's been great to have you today.

[00:27:24] Jennifer Fink: Thank you so much for having me.

[00:27:26] Rayna Neises: And thank you listeners for joining us today for Stories of Hope with Jennifer.

[00:27:29] This podcast episode has been brought to you by No Regrets, Hope for Your Caregiving Season. It's my story of caring for my parents during their journey with Alzheimer's disease. It's filled with heartwarming stories, practical tips and tools that I use to bury my parents with No Regrets. No Regrets, Hope for Your Caregiving Season is available anywhere that you buy books.

[00:27:48] You can buy a special Autographed edition through my website at www.noregrets-book.Com. It's a great gift or an opportunity to be able to treat yourself caregivers. A Season of Caring Podcast was created to share stories of hope for living content, loving, well, and caring without regrets.

[00:28:07] If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.