Effective teamwork is necessary to ensure safety, proper care, and support. But do you know who should be included in your loved one's care team? Jennifer Fink, from the Fading Memories podcast, joins us to discuss her own experience with caring for a loved one with Alzheimer's. She offers helpful tips on putting together a successful care team and how to keep communication open to ensure your loved one has a supportive environment.
Video Transcript
Hello, everybody, and welcome into Senior Living Live. My name is Melissa. I hope you are having a great day. In this episode, we will be discussing some simple you can take to set up a team for a senior loved one.
A care team that is. Jennifer Fink is our guest, and she is going to discuss What exactly is a care team and what you need and how you can set one up to ensure that your loved one is receiving the absolute very best care? Jennifer, thank you so much for being with us here today. Thank you for having me.
Absolutely. First, tell us a little bit about yourself and your background.
Well, thank you, again, my name is Jennifer.
Both of my parents are gone. My mom had Alzheimer's disease for twenty years, my maternal grandmother had vascular dementia for, she's from, like, seventy six ninety one, however, I can't do that math very well in my head. And my maternal great grandmother also had what they called back in the day, senile dementia.
She died before I was born, so I don't think they even knew The differences at that point, but, yeah, I don't have the greatest family history.
And from nineteen ninety one to two thousand and five, we had family business together. We had a one hour photo lab. If you guys remember those days, and a photo studio where I did portrait work.
And we were dealing with my mom, dealing with her mom, but was also becoming quite evident that she was having memory issues and that was kind of scary because kind of already were going through it with my grandmother.
And unfortunately, you know, this was probably two thousand three, two thousand four. There wasn't the information out there. There wasn't the podcasts out there. It was a whole different world in terms of caring for a loved one, getting knowledge and all that stuff. So I kind of became a hover caregiver.
My mom would basically, shoot the breeze with clients and not write down directions or due dates or any other useful information and to not embarrass her or even, you know, to some extent myself, I would basically insert myself into a conversation to figure out what she was telling them what they were telling her and it just got really stressful.
So I was kind of relieved in two thousand and five when my parents retired, I had been building up the business in my own hometown for the past eighteen months, the previous eighteen months that is, and it was it was nice to just be in charge of my own stuff. Not have to worry about my mom, but I also knew that not having a purpose that wasn't so good for her, but it was it was a double edged sword. I needed the stress relief from not having to deal with her and whatever she was telling clients because I have a lot of funny stories with that and, you know, wanting to make sure that she you know, didn't just waste away for lack of a better term.
Yeah, so a lot of experience obviously, and you are absolutely correct. I mean, the amount of information from two thousand and three to now is incredible. And we're still kind of just touching the tip of the iceberg of what we could be doing, right, and advocating and trying to get that information out there about how to live with somebody who has dementia, somebody who has dementia, what do they expect? What should they expect if they're diagnosed with the disease?
So there's so much information that has come around recently. And this is why we're having this topic today because we want what you provide. The podcast all the information. Your background, your experiences can certainly help somebody else and hopefully one of our viewers out there.
So, Thank you for telling me about your background. Again, I'm sorry about your family history, but it has brought you where you are today with us.
I think, you know, most people dive into caregiving believing that they're going to be prepared for that and what it is day in and day out. So the initial intent is good, as you know, but how can this be problematic?
Well, most of us I think end up caregivers because of an emergency, you know, dad got lost coming home from work that he's done for, you know, thirty years. You know, mom got lost going to the nail appointment, grandma fell, there's usually what one of my past guests called that Tuesday afternoon phone call that upends your entire life, and in the early stages of dementia as I'm sure you know, you can make some adjustments, you know, put in place some, you know, some procedures that help them, help themselves, and you kind of move on and you think, okay, got through that, that's great.
And I think it's typical human nature where we were like, oh, thank God. That that you know, emergency is over, and we don't want to, even if it's just subconscious, but we don't say, what might the next thing be? What might the next step be? It's something I just learned from a recent guest of mine, is to ask that question, what What might be next?
Ask doctors, lawyers, friends that have care given? I don't know, ask the stranger on the street, what might be next? Because it'll help you kind of plan ahead instead of getting, you know, sideswiped with another emergency or, you know, they progress further into the disease and what was working, you know, last year is no longer working, and now you're scrambling around trying to figure out, what do I do? And you're just constantly in that state of of trying to fix a problem that you can never fix.
And the other thing I think is one of the issues it's a little bit less now than when my mom was obviously having issues, is, you know, we want to protect their their dignity, which is important but we can't hide the fact that they've got this disease, way back in the day, people didn't talk about cancer, you know, it was the big C. You know, we didn't talk about AIDS, we didn't, you know, we didn't talk about some of these really devastating diseases, and we're starting to get there with Alzheimer's and other dimensions, and unfortunately it's kind of a slow progress because there are no treatments.
There's not really a good preventative other than the multiple episodes I've done on, it's all lifestyle choices. There's no pill. You got to eat right, exercise, blah, blah, blah. We all know what those are.
So a lot of people are like, I don't want to know. A lot of people ask me, do you want to know? And it's like, kind of, yes, because I know the importance of being able to plan ahead, but kind of no because I've already lived through it a couple of times and I'd rather not live through it a third.
So, you know, even for myself not knowing what's coming next, it's not necessarily the best choice, so we dive into caregiving with, you know, the biggest hearts, the best intentions, but, you know, not knowing what we're facing, we don't put enough, you know, enough procedures and barriers, boundaries in place to protect ourselves and our loved one. Yeah, and you said it you can't fix something that cannot be fixed and everybody wants to fix something. We're all fixers. We want we want there to be beginning middle and end, right? And it's just, it doesn't happen with this disease, unfortunately.
So, what are some of the issues that you feel caregivers face? And what are some tried and true solutions that you know for your own experiences, through your -- the people who come onto your podcast, clients, their experiences, of someone who is helping a senior loved one in the trenches.
I can tell you that all of what I'm about to share, I have learned from guests because my dad did probably ninety eight percent of the caregiving, and I think that was a generational and gender role that he took on. I mean, I tried to help. He had his own chronic health issues, so it was like, you know, dad, I really think you should, you know, take mom to an adult day program. I think she would benefit. I think you would benefit blah blah blah. I did all the legwork, all the research, and he just he would he refused. He didn't even consider it, just really very frustrating.
So you know, my experiences are, you kind of try to help the parent who's doing the caregiving, and then that parent dies, and you're like, oh, crap, now what do I do?
I don't suggest starting a podcast is the best way to find answers, but that's what I ended up doing.
So, to set up a care team and this is well, we can not what's the right word. We can we can go into depth, but I'll just give you the highlights.
So when you get a loved one that's been diagnosed with some sort of life limiting disease, especially something that's going to require more and more and more hands on physical care from somebody, take time today, you know, now that the shock has worn off about this diagnosis, write down all the things you gotta do today. You know, make the bed, make breakfast, plan dinner, walk the dog, water the grass, whatever it is. Whatever you're gonna do today, write that all down. Do that for a week. Now you know all of the responsibilities that you have that you need to handle for this week. And then just expand it out for a month, and then, you know, write down the non reoccurring things like, you know, the random doctor's appointments or, you know, nail appointment, hair appointment, things that happen often enough that you still need to plan for them, but aren't necessarily a weekly or daily thing.
Then you're going to make a second list of everybody you know, and they do not have to live in your hometown, they can live across the country, across the globe, doesn't matter. Make a list of everybody, And then this is the crucial part.
Write down what you think their best skill thing, what they could do what they would be best at doing that could help you, and I use this example all the time. Please do not ask me to call insurance companies, banks, any place that's going to put you on hold and ask you a name questions, I am not your gal.
Just the thought of that stresses me out, drives me right up the wall, the hold music makes me want to hurt somebody, I'm not it. I I will do it for you if I have to, but I would rather make you some food, take your loved one to the hair place, you know, the park, anything like that. I'll bring you baked goods, I'll wash laundry, I don't want to call the banks. And so by writing down what somebody's best skill is in your eyes, it allows you to very easily say when they come up to you and say, oh my gosh, Jen, I'm so sorry to hear about your mom, must be really hard to have to take over after your dad died.
Is there anything I can do to help? What is our normal response? Oh, thank you so much, but I've got this. Oh, yeah.
You may think you have it, but you know what, one of these days, you're going to be up to your eyeballs, in exhaustion, and stress, and confusion, and grief, and you're gonna be like, I need help, and everybody else is gonna be like, well, we thought you got it. You said you got it. We're busy in it doesn't work. So when that person says, what can I do to help?
You have made a list, you have made a list of their skills, and you can be like, Oh, thank God. That'd be so great. You know what would help me is if you could please call the insurance company and make sure blah, blah, blah, whatever my husband did all the insurance company calling until they found out that they weren't supposed to talk to him. And then he'd put us on speaker phone, which made them very uncomfortable because it was like, this other person that we know is still on the line is really not supposed to be part of this, And I had to keep reassuring the insurance company that they would they really, really wanted to talk to both of us, because dealing with me alone was It was not going to get the job done, so these are the kind of things that people can help you with, and make everybody's life easier.
In my situation, made the insurance company's job easier, they could get the answers they needed from a person who spoke their language. My husband used to be a banker, he's been a real estate broker for almost twenty years. So, you know, he he knows that world. I don't wanna be part of that world.
So now you've got your list of all the things that need to be done, you've got your list of people can help you. So right now you're not spending any money, because unfortunately, as I said earlier, my mom had Alzheimer's for twenty years, sometimes this disease can last very long time, and if you start shucking out money for paid caregivers, you know, you might, you might have depleted your resources by the time your person needs the most help.
Is definitely not what you wanna do. And in the beginning, they're not really gonna want people coming in and doing things for them to them, etcetera.
They don't want that a lot, so it helps to have people they know they care about they're friendly with to come in and, you know, handle some things, you know, maybe the store neighbor is going to help with the gardening, or, you know, Betty from down the street is just a fantastic chef, and so she brings meals twice a week.
It's it's all kind of personal on who does what and what you need the most, but it's, you know, that's a great place to start because Now, you've got people who are with you in the beginning stages, and when things get tougher, you're not inviting somebody in to help, and then having to explain to them how to deal with somebody with Alzheimer's or other dementia. You're not trying to explain to them how to engage with your your loved one. That's just more work for you, you don't need that, and, you know, it's not fair to the person who's trying to help, it's not fair to the loved one, Start early.
Yeah.
That's all I have to say. Start early. Exactly. So that care team as you as you pointed out can look very different for every for for every single situation and every single family, it can look different, but it sounds like it's just it's something that's going to take a village.
So, especially in the beginning. So then that turns to the next question and that is, then when is it an appropriate time for someone to receive full time care.
Well, that's obviously also a personal decision.
And it's I think if you have help earlier on, the time frame for needing full time help maybe gets pushed out. Like I said, my dad did all of the caring And now that you're asking this question, I'm actually wondering, my mom was very reluctant to get in the shower when She stayed with me, so my dad was in the hospital for thirty two days. That in itself was a thrill, emphasis on thrill.
And My mom was either at her, their home with her younger sister who is the one that took care of my grandmother, or at my sister's house, which had school age kids, and her in laws, and a couple of dogs. And then she'd be at my house, I had three dogs, mom and her dog bounced around, which was not fun, and it became very obvious to me that she did not respect me as an adult who could make decisions for my own household.
So I knew she wasn't coming to live with me.
But, you know, thinking about it, it's like, my dad had no patients whatsoever, so I have no idea how he got her in and out of the shower because she was really reluctant with me. So these are the kind of things that start they start becoming like a daily or, you know, regular battle, and, you know, you have to take into consideration your own health Obviously, if you're taking care of a spouse, you guys are about the same age, you know, it's different for somebody like myself taking care of a parent or somebody taking care of a grandparent.
It's just, you know, you need to consider, can you do all the things that they need? Are you willing to do all the things that they need? Because as I'm sure you know, and your listeners are probably well aware, you know, people with any form of dementia in the later stages end up, forgetting how to feed themselves, forgetting how to, you know, use the bathroom, they can't dress themselves and, you know, some of them eventually end up not being able to walk. Their brain just forgets to talk to their legs.
It's very strange. It's interesting, but it's very strange at the same time. So you have to kind of gauge, you know, you're willing to wipe your mother's butt, or you're willing to hand feed them or these things that you can muster up the strength. Some people are like, they just jump in their their great for me, there was no way in heck I was helping my mom in the toilet.
Yeah. The candor is great. I mean, but I mean this is this is real life stuff. Right?
Then we went back to like, you know, in the early stages, people assume, you know, they got this, it's okay, I'm managing.
But not asking the question like, you know, if you're in stage one or stage two, what's stage three look like? What's stage four look like? And of course, it's not a cut and dried scenario. It's very fluid and it's different for everybody. So, you know, asking people like you, me, other caregivers, you know, that have been doing this longer, what did you do when x? What should I look for or what should I be expecting like? You ask the question, when should we consider twenty four hour care?
You know, you may not, a lot of people are very determined not to do that. You know, I had zero qualms about putting my mom in memory care, because I knew I knew living with me was not good. It wasn't good for me. It wasn't good for her.
And it turns out that despite my lack of research into all the places, I went with the place that my gut told me was good, and thankfully my gut didn't lie. My mom thrived in memory care. She had friends, got into mischief, she kind of had a purpose, you know, she was walking, she was feeding herself, she did need help with dressing, she did need help, you know, she needed encouragement to get in the shower. So, a lot of people couldn't handle her at home.
But I knew her personality, my personality, it just was not gonna work. So it's definitely it's definitely something you should not promise to never do. Like, I never told my mom I would not move her to memory care. She swore she didn't want to be a burden, but she wanted to live in her home forever.
Really frustrating because it's like, those are mutually exclusive. Which one would you like? You can't live in your home by yourself, so I guess I guess memory care is gonna be it. Yeah. So I hope that answered the question, that was kind of a little rambly circular way around saying it's all kind of personal. I mean, like I said, the candor is great and I know that That's just sort of the tip of the iceberg of what people can expect for your podcast, right? So tell us how people can get in touch with you if they have more questions or they they want to dive into what you have to offer in terms of your experience and how can they listen to your podcasts.
Let me explain real quick why I started fading memories, so late twenty seventeen, this was back in the old days when somebody actually got into a car and drove to a gym Instead of now, I just walk into my garage to my Peloton, which I have to say I love better.
I was listening to podcasts. I've always been podcast listener. It was actually an OG podcast listener back when you had to stream it through your web browser, and I'm also, as I mentioned, a retired portrait photographer, so I had my port computer streaming a podcast and running Photoshop, and if my computer had fingers, it would have been given them to me because that's a lot of a lot of power to be asking your computer to do those things.
When they came out with pod players, I got way more interested into it. In this day driving to the gym, I was like, duh, I need to go find a podcast on caregivers, podcasts on everything. Well, to my surprise, back in late twenty seventeen, there was one: For better or worse, it was not my cup of tea. I didn't address what I was looking for, and my husband and I had talked about starting a podcast for his business years ago, back when you had to do him through the web browser. And so I thought, well, you know, I cannot be the only family caregiver who is listening to the the typical solutions to engagement or solving problems, reading books at which point there wasn't as many good ones as there are now, and just coming up, I mean, every somebody would say, you know, simplify activities they used to love, that was a fail.
You know, take old photo albums and reminisce about the old times, fail unless you wanted to be depressed, then that was spectacularly successful.
I knew I couldn't be the only family caregiver feeling that way. I also knew that people taking care of a loved one at home did not have time to do all the stuff that I was trying to do to be the best caregiver I could be for my mom, so I started my own show. So my show is conversational just like we're doing now, I talk to caregivers, researchers, doctors, authors who have written books on caregiving, anybody that sounds interesting, anybody that has spin on something, I'm still surprised I've been doing this for six years, still surprised there's new people to talk to. I keep waiting for the day that I gotta, like, revisit all the old people or something.
Fadingmemories is on all your podcast platforms. You can find me at fadingmemoriespodcast dot com. If you want to email me, it's hello at fadingmemories podcast dot com, and just a quick funny aside The reason I have this giant website name, so I went to I I chose fading memories because of a story that I'll have to tell another day.
And when I went to buy the domain name, I typed it into GoDaddy or whatever, and I looked at the screen and I went Man, I must be really hungry because that cannot possibly say what I think it says. When I had lunch, came back in my office, I looked at the screening, and I'm like, That's this thirteen thousand dollars. I have never ever seen a website address.
That expensive. Apparently, it's like a book, a movie, a band, never heard of any of them, have never run across them, so I had to go through the whole litany of do I want dot org or dot info or whatever the other dot whatever's there were. And I'm like, I want dot com because that's what people my age group are used to, that sounds terrible.
So fading memories podcast, it is.
All right, and it's not just at your age. I think we all are looking for the dot com and when it's anything other than that, we give it a little bit of a side eye. So So, so there you go. And definitely no side eye here because what you have to bring to the table is going to help a lot of people and already has, obviously, in the years that you've been doing it, we hope that you found some new listeners within our viewers here at www.SeniorLivingLive.com.
Jennifer, thank you so much for being a part of our platform, and we hope we can send many others to your platform. I'll make sure to send people your way as well. So thank you. Yeah, thank you.
And for those of you watching, if you enjoyed this conversation with Jennifer, are you you know, we're interested in other maybe videos that could help you with dementia, a loved one, senior loved one, head on over to our website, we just mentioned it, www.SeniorLivingLive.com. There you can find videos all about senior living and the best part guys They are all free and available 24/7. Thank you so much for being a part of Senior Living Live.
Have a great day.
