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112. Creating a Support Team- Jennifer Fink
68 Plays3 years ago
After helping care for her grandmother who had vascular dementia, Jennifer realized her Mother was showing signs of early onset Alzheimer’s. After the death of her father in 2017 Jennifer went searching for answers to many of the common questions and Alzheimer’s caregiver faces. Being a busy entrepreneur Jennifer realized that a podcast would be the easiest way to learn more about caregiving while completing other tasks.
Sadly, in late 2017 she only found one and it didn’t quite address what she was looking for, so she did the next best thing, and started her own. The Fading Memories podcast is now in it’s fourth year and despite the death of her Mom in March 2020, Jennifer is still talking to caregivers and still learning how to be an excellent caregiver. On the podcast she discusses caregiving, brain health, self care and how to age well.
Contact Jennifer Fink: https://www.fadingmemoriespodcast.com
Twitter https://twitter.com/Jennifer_Fink
Instagram https://www.instagram.com/alzheimerspodcast/
LinkedIn https://www.linkedin.com/in/jennifer-fink-338957/
Facebook https://www.facebook.com/AlzheimersPodcast/
Contact Kendra Rinaldi to be a guest on the podcast or for grief coaching: https://www.griefgratitudeandthegrayinbetween.com/
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Transcript
Preparing for Caregiving
00:00:01
Speaker
So the next thing you know, your whole life has been succumbed to taking care of this person and you're like, holy crap, I need help. And now you're kind of trying to put together help when it's a lot harder. It's a lot harder for people to step in. It's a lot harder for your loved one to accept help. So do it early. And the way I suggest people doing it early is to make a list of all your daily responsibilities, your weekly responsibilities, monthly responsibilities,
00:00:26
Speaker
You know, keep adding and revising, not necessarily revising, mostly adding to this list, and then make a second list of everybody you know.
Exploring Grief in Life Transitions
00:00:46
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
00:01:02
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host. Now, let's dive right in to today's episode.
00:01:23
Speaker
You
Insights from 'The Fading Memories' Podcast
00:01:24
Speaker
have Jennifer Fink on the podcast today. She is the creator and host of a podcast called The Fading Memories. And it is her fourth year with this podcast and I'm so excited to learn from a fellow podcaster here.
00:01:42
Speaker
I was already learning even just like her green screen and background, how she's doing that. So I'm sure I'll pick your brain after we start recording to Jennifer. Welcome to the podcast. Thanks for having me. I'm excited for you to be here and to learn from you and this topic about Alzheimer's, which is primarily what your podcast is about and partly your story and why it is you started the podcast.
00:02:11
Speaker
Let's
Relocation and Community Building
00:02:12
Speaker
learn a little about you. Tell us where you live and a little bit about your family and upbringing and then we'll go into how it is you started the podcast.
00:02:24
Speaker
Sounds perfect. So my name is Jennifer. I am a multi-generational Californian, which makes me very unique. Thank you very much. I like to tell people that. And I live in Northern California up until December of 2019. I'd lived in the same county my entire life, which is in the San Francisco Bay Area. But my husband and I and our two golden retrievers
00:02:51
Speaker
relocated in December to the Sierra foothills, a little quieter, a little more laid back, moved to a community with a lot of social club activity type options, which since I worked from home for almost 20 years and then post pandemic, if we can call whatever we're in now, post pandemic or post something, I don't know what,
00:03:19
Speaker
I, it was like, how am I finding my people when I work at home and, you know, we lived in a suburb of San Francisco, far, far flung suburb.
00:03:30
Speaker
And we just sort of, we happened on this place through other people. We had never found out, you know, we didn't know anything about it until late last summer and fell in love. And so here we are. And it's been, it's been an interesting journey. The last couple of years have been a lot.
Home and Family Health Reflections
00:03:47
Speaker
For a lot of us, for sure. So you already are comfortable with that part, of course, of working from home. You were already doing that before starting then your podcast. So doing a podcast from home is just something
00:04:00
Speaker
Pretty easy for you. What kind of work did you do in the that you keep doing in the last 20 years? I was a portrait photographer from 1991 to 2020.
00:04:13
Speaker
And we moved at the beginning of 2020, my husband's a real estate broker. We lived in a golf course community, the owners of the golf course in kind of a snotty fit, because the city wouldn't let them do what they wanted to do, which didn't go along with what the city wanted, close the golf course. And, you know, logic dictated that when the golf course looked like, you know, dried
00:04:45
Speaker
I mean in a few more years it will probably resemble the natural hillsides but right now it just looks terrible.
00:04:53
Speaker
But we bought the house in 2007, and we all know what happened not long after that. And my husband's like, we have equity. We're both getting older. I don't want to end up in this house upside down again. We should sell. And I said, well, we bought this house to be our forever home because it was large, single-story, wide hallways, even flooring, perfect for aging in place, which is something we do talk about a lot on my podcast.
00:05:22
Speaker
But it was very, very large and very, very expensive and on a dead golf course. I'm like, you know, what's going to happen if we sell? One of two things will happen. My
Family Health Challenges and Decisions
00:05:32
Speaker
mom, who had had Alzheimer's for 20 years, my mom would die or my paternal grandmother would die or both.
00:05:39
Speaker
Guess what happened in 2020 and 2021. Exactly what you just said. And so your mom passed away then from Alzheimer's in 2020. And then you mentioned in your bio, your father passed away in 2017. Was he also from Alzheimer's or something else? He'd had diabetes for years.
00:06:00
Speaker
And he was one of those people that just, you know, I don't, I don't know how familiar you or any of your audience is with people living with diabetes, but there seems to be two camps. I'm going to do everything I need to do to stay healthy. And my dad's method of I'm going to eat what I want and die happy. Spoiler alert, that did not happen.
00:06:20
Speaker
Have never met somebody kind of in the middle so I don't I don't know it's I find it interesting because you've got Literally like opposite camps and it's like okay you know I could see like I'm gonna do everything I can and you know you might not be the best at it because You know there are certain foods. We just don't want to avoid it. It's it's tough, but yeah he
00:06:43
Speaker
He, he was in the other camp and it wasn't, it wasn't beneficial. He did not accept help with my mom from my sister and I. And so I think between his chronic illnesses and her, you know, escalating Alzheimer's, I think he just burned out, which is a very common problem with Alzheimer's.
00:07:06
Speaker
Yeah because it is so much that goes into that and not only probably Alzheimer's caregivers but caregivers of any of these long illnesses right that somebody is caring and not knowing also when that person is going to pass. You don't know what kind of coping mechanisms they're kind of dealing with themselves and sometimes they're not the
00:07:30
Speaker
Healthiest and sometimes maybe as your dad was kind of like, you know what? Forget it. I'll throw everything out the window for somebody else could be like, no, I have to be the healthiest possible in order to care for this person. It could go either way. So your mom, you mentioned then she had already been then with Alzheimer's for over 20
Impact of Alzheimer's Diagnosis
00:07:50
Speaker
years. Well, how old was she when she was diagnosed or when? Yeah.
00:07:54
Speaker
She was actually 69 which puts her just outside the window of being diagnosed with early onset Alzheimer's But she was mid stages by then. I mean when we finally got the diagnosis it was like duh Medical degree to tell me that one so I'm I tell people that she had early on set Alzheimer's but
00:08:18
Speaker
A lot of the reason I do that is because people need to understand it's not just an old person's disease, and she started showing signs, ugh, my mouth's not gonna wanna work today. Oh my gosh, you're like, I didn't like that too sometimes. I'm like, blah, blah, blah, I have to like do it with some of those theater exercises, like warmups, yeah.
00:08:37
Speaker
She started showing signs of memory issues at 52 and a half. So needless to say, you know, my dad died when I was 50. So when I got to 52 and a half, it was like, okay, is my brain okay? Am I showing signs? It was kind of like, you know, I knew I was fine, but you still kind of wonder because what people with Alzheimer's don't know that they have memory problems.
Recognizing and Diagnosing Alzheimer's
00:09:04
Speaker
They think you're the crazy one.
00:09:06
Speaker
You know, they think somebody's missed, you know, moving their stuff, miss stealing from them, lying to them. It's just, Oh my gosh, it can be, I think the early stages can be harder because they can present as normal to outsiders. Like, I don't know if you have kids, but you know, sometimes toddlers, they're just little monsters with mom and they're just perfect little angels with strangers. I know what you mean.
00:09:32
Speaker
That is the same thing that happens with many people with Alzheimer's. You get them to the doctor finally because that's not usually something they're super willing to do and the doctor runs, you know, because they don't have enough time to spend with people to actually figure out what's going on.
00:09:51
Speaker
It's really easy for the doctor to think you're the crazy one or you're overprotective or, you know, maybe you're like controlling borderline, you know, elder abuse. I mean, it can get very complicated and it can take a very long time to be diagnosed because if you if you're like.
00:10:11
Speaker
If it's your spouse, like you almost have to be living with the person. You almost need to document all of the like weird stuff that's going on. Videotape, strange or videotape. I have my phone and I'm running off to take a photo. It's like.
00:10:32
Speaker
Weird world do I live in but whatever?
Creating Alzheimer's Resources
00:10:35
Speaker
You know, so it's it's a challenge and I've had guests that like there's one gal. She's one of the founding Moms of the all's authors. She kept a notebook for her sister and the medical profession of what was going on with both of her parents and her parents were both diagnosed with Alzheimer's on the same day sounds lovely and She took this notebook of what was going on and turned it into a book
00:11:02
Speaker
which then became the All's Authors, which is a fantastic resource if you're looking for All's Author, is it A-L, A-L-D? A-L-Z. ZZ, sorry, but there's a little bit of All's Authors dot com and they are
00:11:23
Speaker
They've got every kind of book on Alzheimer's, dementia, for kids, people that have the disease writing about it, people like myself. If you need some information about Alzheimer's, go there. Yes. Now, at that moment, then, four years ago when you started this podcast, though, how was it for you then receiving this information? Yes,
Supporting a Parent with Alzheimer's
00:11:45
Speaker
OK, you kind of knew that this could be. But then you're receiving this information. And as you're saying, it's like, how do you support someone
00:11:53
Speaker
that doesn't even know they need the help, right? And thinks that you're the crazy one. So how did you handle as a daughter then helping her navigate this in a way that was kind of respecting her but also respecting you? How did you do that to begin with before you started all your research about it? The research, the failing
00:12:19
Speaker
having a successful outcome with what you just asked is why I started the podcast but I I will back up because whenever I would visit with my mom or my parents, you know, my dad was always there as a buffer and I don't think he
00:12:34
Speaker
purposely acted as a buffer. It just was easy for her. She would defer to him. He and I would talk about normal things because we could have a normal conversation. And then she would sort of interject. And maybe you might ask her a question that you think she could answer. This was definitely in the later stages. It was, I really wish I knew 10 years ago what I know now. And it's changed a lot in the last five, 10 years.
00:13:03
Speaker
We talk about it more, thank you, millennials who put their loved ones all over the internet. And there's more information. And unfortunately, a lot of that's happening because there are more people with Alzheimer's or some other form of dementia. I mean, if you guys think COVID was a problem, that was nothing to what is coming. Because we have no, there is very little support. The resources for family caregivers are
00:13:33
Speaker
all over the place. I mean, it's like, if you think of like splatters, they're there, but how do you start looking for them? And, you know, you're in the midst of caring for somebody and you're trying to find answers and, you know, it's just, it's a lot. So, and that too is changing.
00:13:52
Speaker
I think that was my phone. Hang on, let me put that on do not disturb. But it's just going to be so slow that it's ridiculous. And, you know, it's I tell my husband, I'm like, I hope neither one of us ends up with some sort of cognitive impairment because, you know, it's it's going to get uglier before it gets better, unfortunately, in my humble opinion. But I just had a conversation with somebody yesterday whose parent
00:14:23
Speaker
Was recently diagnosed and absolutely refuses to allow them to tell anybody and that's just devastating because There everybody's gonna need help. So I think there was several of us and I think we might have come up with some like I don't want to say talking points, but like a Instead of we need to be able to tell people so we can support you which is one of the things that this person's concerned about is pity and and people kind of leaving them and
00:14:52
Speaker
Now we've kind of turned it around so people knowing will benefit the community and this person and I hope that makes sense. I'm trying to keep it pretty basic because these are not necessarily public conversations I'm repeating.
00:15:07
Speaker
But it goes back to what I was doing with my mom after my dad died. My dad assumed that my mom would come live with me. Pretty hefty assumption, thank you very much. Hasn't I still had careers? I had just turned 50, our daughter had moved out the month before. I'm like, excuse me, no, but I'm not gonna...
Care Home Decisions and Challenges
00:15:30
Speaker
saddle myself with somebody who could live another 10, 15 years, and then I'm gonna be in my 70s and trying to do all the things that we haven't done in the last 10 years. So I also knew it wouldn't be great for her. I knew at the end of a week, one of the two of us would be dead.
00:15:48
Speaker
Yeah it's a matter of understanding the personalities as well like there's some people that are amazing caregivers that can do that with their parents and others the personalities just might not click and being able to be honest about that that takes a lot of guts because a lot of times too is the assumption that you do end up doing it and that if you don't you're a bad child because you didn't
00:16:11
Speaker
Do that, write my society's standards or even your own. Sometimes that guilt that we even bring ourselves onto. But it does take a lot of guts to know when we're not capable of something. And it's important that we have conversations that, and I've had more of them in the past six months about when and why and how to choose a care community.
00:16:40
Speaker
because at some point it's very likely you would need somebody else to step in. Like my husband is a foot taller than me. So I would not be able to physically handle him in the later stages of an Alzheimer's because they do become bedridden. Their brain forgets how to tell their body how to walk.
00:17:05
Speaker
your brain forgets to tell them how to eat so you have to you know provide personal hygiene and toileting and feeding and how are you supposed to do this somebody's a you know like a foot taller than you you one wrong move like you may learn all of the transfer techniques all of the
00:17:25
Speaker
hefting moving techniques one wrong move you know they move one way you move the next thing you know you're both splattered on the floor and i have heard stories of women that end up underneath their spouse that they were trying to support and they're laying there for hours before somebody finds them i mean what a nightmare i mean just it's not great so with my mom i knew
00:17:48
Speaker
to maintain any semblance of what we were doing prior to my dad passing away that, you know, we'd either have to, if she was living in my house, we'd have to have a caregiver to deal with her, care for her, entertain her, engage her during the day. And so we could work and do our normal things. And it's just, it just got to the point where I'm like, I don't know that, you know,
00:18:14
Speaker
You have to contemplate making your home safe. And we lived, we backed up to hundreds of acres of open space. We had a gas stove that if you leaned against the knobs, flames were on. I mean, like you could barely brush them. Like it was ridiculous how easy it was to accidentally turn on the stove.
00:18:34
Speaker
and one of the biggest factors which is kind of funny but not is you know my parents had a black miniature poodle who was spoiled rotten and I had
00:18:46
Speaker
two golden retrievers at the time, we vacillate between two and three. My dog, who was literally my appendage, my husband referred to him as my stalker. The dog used to sleep wrapped around the chair in my office instead of- I have two, I have two appendages as well. I have two. I understand. Yeah, this one. And if I left the house, he'd stand behind by the garage door and whine. I mean, it was like, dude, have I ever left you permanently? No. So, you know, my dog hated
00:19:16
Speaker
with my passion. Well, the dog was really a pain in the ass. I'm just going to just shriek and scream and cry if my dad left. So I'm like, I don't know how we're going to manage my mom and this dog. And my dog is going to move out. And that'll be really tragic. Because when the dog would come over with my parents, my dog would go out and lay in the dog yard, like, let me know when little stop balls gone. So it was just, it's like, these are all things that people don't take into consideration.
00:19:46
Speaker
So it's like the story is getting very long. I haven't quite addressed your question yet, but I'm getting there. I love it. I have one under my feet right now. The other one's right next to me. It's sleeping. So I totally can, can, can relate. Okay. So then, so then you made the decision then because of all these different dynamics that it was not the best for her to be then living with you. So.
Maintaining Routines for Alzheimer's Patients
00:20:15
Speaker
after that then so I'm gonna lower my microphone I feel can you hear like my better okay the um so you made them the decision of what would be what was the best care for her then so I found a memory care residence this is gonna be another fun very quick story though
00:20:39
Speaker
The place was nice. The staff seemed nice. Of course you are dealing with the executive director and the sales team. So, you know, great assault there, but everybody was nice.
00:20:51
Speaker
the staff greeted you, talked to you, you could see them interacting with residents and I liked it. There was one that was a mile down the hill from my house. Didn't like that one, which was unfortunate because that would have been very convenient. This one was the next town over. So about 12, 15 minutes away, not, not horrible. And I said, you know, my biggest issue is I don't, I don't know what I'm gonna do with my mom's dog. And they're like,
00:21:16
Speaker
Yeah, we could probably talk about her keeping your dog. And I literally practically threw the checkbook at them. I did not do the normal due diligence for finding a care home. I did not check state licensing board things or Google. It was like, oh, you'll keep the dog here. Take money. Take money.
00:21:38
Speaker
So I've been on other podcasts where we talk about specifically that topic of choosing a care home. And I always like to be the poster child for how not to do it, but thankfully, those were your priorities too. Cause at that moment is like, if somebody could, because if you think of it too, that, that dog could represent also something that's constant in somebody that's memory, you know, uh, memory is fading. So therefore.
00:22:06
Speaker
It is important for you. It was an important decision. And I guess subconsciously to me, it also spoke to the fact that they understood, like what you just said, the importance of this pet for my mom and the consistency and the fact that they were willing to take on some of the extra responsibilities of a person with advanced Alzheimer's and her spoiled rotten dog. So thankfully, the care home that I chose was fantastic.
00:22:35
Speaker
You know, they put up with more crap from my mom at the end than I think they should have. The more help she needed, the less she accepted, and she got into the really bad habit of scratching and clawing people and drawing blood, which was very embarrassing for me because that is not how my mom would have behaved. I mean, she might hold a grudge against you for a month, but she would not draw blood on you. That was not her thing, thankfully. I was not abused as a child.
00:23:04
Speaker
They just tolerated a lot. They tolerated the dog for 18 months until they renovated the community and they were getting new carpet.
00:23:13
Speaker
And I had the pleasant experience of letting the dog out into the courtyard to do her business. She ran around like, I don't know how she ran around because my audience knows that this dog weighed double what a dog her size should have weighed. So that was one problem. And the residents were all feeding her. And I honestly, I make the joke that I expected to show up any random day and find popped poodle all over the place because
00:23:40
Speaker
I mean literally yeah she weighed 28 pounds she should have weighed 15 and there's and I don't know how she ran around but she literally ran around this courtyard it was a hundred degrees and I'm like if you're not gonna pee we're going back inside mom's inside open the door walk in and she literally laked all over the carpet and I'm like oh my god
00:24:01
Speaker
So now I gotta go get the maintenance staff to clean up because they don't just have random tools for cleaning up after the dog. So when they were renovating and they got new carpet, the executive director, he never asked me to re-home her. He just basically beat around the bush until I said, oh, okay, get the mess.
00:24:19
Speaker
So do you have to find then a place for for the yeah and My dad had bought her from a breeder and for those people who have not gone through that experience The contracts with a breeder basically you co-own the dog so I basically said you need to take her back because she can't stay here anymore and I'm not sure some of these people are a little strange too much dog hair on the brain I think
00:24:46
Speaker
and she wasn't really super responsive so I finally I called poodle rescue and was working with them when she finally said yeah I'm gonna I'll take her and she sent Misty to a ranch in Oregon which was where her grandkids lived so I hope the dog lived out the end of her life
00:25:05
Speaker
skinnier and happier and more psychologically normal because the dog was just back going. Well now she had a place to run too like if you know like it wasn't you know it was not the best situation probably being inside of a space in which she probably didn't have. Okay so your mom then lived in that facility for three years prior to passing it was close enough for you to be able to
00:25:29
Speaker
visit her. Now, what did you do for yourself in terms of tools to navigate the grief that was this anticipatory grief of her knowing that she would die?
Grief and Quality of Life in Caregiving
00:25:44
Speaker
And then also just the fact of the grief of your mom no longer being who she was through the illness. What did you do?
00:25:53
Speaker
Well, I'll get to the answer in half a second, but a lot of people that are caring for a loved one with that kind of terminal disease. I mean, life is terminal. Cancer is bad, but there's hope. There is no hope with Alzheimer's.
00:26:09
Speaker
And you think I'm depressed. You know, I got to snap out of, I got to talk to a therapist. It is not depression. It is actually living through the stages of grief over and over and over. And then they die and they get to do it again. It's lovely. So understanding that you are literally grieving them is a really huge benefit to your own self care because now you don't
00:26:38
Speaker
Hopefully you're not putting the pressure on yourself to snap out of it, get over it. I'm not the one with Alzheimer's. My challenge is it was hard not to be angry that my mom was unable to do the things I think she should have been able to do when my dad was gone. Hang out with the three grandchildren, travel, redecorate the house however she wanted. Whatever she wanted, eat different food. My dad was a terrible eater. They ate terrible food.
00:27:06
Speaker
And so it just, that was really hard. And knowing that she would really be mad at me if she understood that she was in a memory care residence and, you know, wearing her pants backwards and all those things, it was difficult.
00:27:25
Speaker
Guiding beacon with her was to always do whatever I could to give her joy and as much quality of life as possible and that helped me because I Wasn't raging against the you know, it shouldn't be this way. You should be doing these other things This is unfair. You know all of those negative emotions that are normal but not helpful and It was not easy. So I maintained my own self-care by going to the gym and
00:27:54
Speaker
something we don't do anymore. I have a Peloton at home now. And I actually in the last couple of years of my portrait photography business, I poured a lot of
00:28:09
Speaker
the like, I'm losing, you know, I know these memories that we're creating tonight are going to be something people cherish for years, decades, maybe longer. And so I really poured my feelings into my art for other for my clients. And it wasn't until
00:28:31
Speaker
the pandemic when, so my mom died March 31st, 2020. So she, she died right at the start of the pandemic, which is a huge benefit because her visual processing was so bad that window visits, zoom calls, FaceTime, none of that would have been an option. And we went, my
00:28:52
Speaker
What I did for her was we would go to the park or the pool or the library so she could watch kids. She was a mom and a grandma, and we'd go to the dog park sometimes too. Those were the things that I could engage with her that gave her pleasure and joy. And she thought of me as the fun friend. I was her best friend. She told everybody she'd known me. She's my best friend. I've known her forever. And everybody laughed.
00:29:18
Speaker
because yeah, no kidding, you've known me forever. Maybe 50 some odd years, right? And there was one day when she actually, when I had flown, this is my last flight since this year was November or November, September of 2019 was, I flew home from Denver. When anybody flown through Denver knows that airport is always delayed. So I didn't get home until late, like early, early in the morning.
00:29:46
Speaker
And I knew, I'm like, I'm tired. And I knew if I pushed it with myself to take my mom to the park or whatever, I was risking a negative outcome because I was tired and I didn't want to get edgy and people with Alzheimer's are, they are really good at picking up the subtle clues that you give off that you may not even be aware of.
00:30:07
Speaker
So I show up with my wedding album to just like it's a really nice chocolate spice bread and some tea and I thought well just have a nice visit in the courtyard and she sees me she goes oh hi where are we going today and I was like what are you kidding me we've been doing this for years and this is the first time you've ever actually acknowledged that we're going out and today we're on point out.
00:30:30
Speaker
that's wonderful so there were little glimpses of her knowing what was like her norm and would you just hold on to those little species pieces of normalcy yeah and you also have to kind of let go of the just you know like my mom had no butt
00:30:49
Speaker
And I had purchased for her, for Christmas 2017, a really cute pair of navy blue. I thought that she wouldn't use the word butt. And I'm like, now I'm getting that little butt. She had no bleach. No bleach.
00:31:11
Speaker
So these were pull-on pants with a tie in the front the tie was mostly decorative Somewhat useful but mostly decorative and I'll tell you how many times I'd show up in that damn tie was in the back and I'm like How come nobody understands these pants are on backwards, but me and
Coping with Alzheimer's Daily Challenges
00:31:29
Speaker
it's like I
00:31:31
Speaker
You know what, they don't look uncomfortable. They really seriously did not look like they were on backwards. I never worried about it. I'm like, it'd be more stress and agony to change, change the direction of her pants. You know, it would offend her and it just was not even worth it. So you have to kind of learn to let some of those things go. But the funniest incident, my mom was really good at hanging on to older clothes that were too big. And
00:31:58
Speaker
you know, because they were familiar. You bought new stuff and that wasn't hers. Oh, that was frustrating. She needed new clothes, but she didn't recognize them as hers. So she'd give them away. Oh, that was lovely. But one day we were leaving. I was taking her to the nail salon to get her nails done and her blouse slipped off of her shoulder. And I looked over and I'm like, I wonder whose black sports bra that is you're wearing.
00:32:20
Speaker
And it's like, you know, at first you're kind of like, and then you're like, but she's clean, and she's dressed appropriately, and she's happy. So okay, I guess we're wearing something else's bra today. And you know, those are the kind of things you just have to like roll with. And I mean, I tell that story a lot, because it's kind of funny, you know, and it really demonstrates how you have to just kind of roll with a lot of things with this disease and
00:32:47
Speaker
just, you know, just just go with it because you don't have any other choices. The other thing that I did to kind of navigate this whole journey was I'm a really curious person and I like to know why. So it was like, you know, you'd get these little sound bites, these little memes like just be in their reality. I'm like, well, what the hell does that mean? How do I do that? And so I started
The Birth of an Alzheimer's Podcast
00:33:10
Speaker
well, I started
00:33:13
Speaker
researching, doing reading books and doing deep internet dives, trying to find ways to engage with her better. And that wasn't working very well. So I joined an Alzheimer's Association support group.
00:33:30
Speaker
And that helped a lot because they have lots of classes and, you know, just being in person with other people that were in the same boat as me, although I was always the youngest in the room with somebody who'd had the disease, the longest, always felt like the gold medal winner of, of yuck. But, you know, one, one month I would be, you know, somebody would offer me support in something and then another month I would offer other people support. And it was like, it felt so good.
00:33:57
Speaker
And then one day in the before times, I was driving to the gym, looking, listening to a podcast that was the right length of time from home to the gym, was doing the workout class and went,
00:34:10
Speaker
Duh, I should look for a podcast on caregiving. There's podcasts on everything else, right? So I went home because I'm blind and can't read things on my phone without glasses. And I searched for it. And there's two problems. One, there is no category for podcasts like mine. So we were
00:34:28
Speaker
were niched into things that don't quite fit, but there literally was one podcast on caregiving. And it just, it didn't address what I was looking for. So I crazily decided to start my own. And that has been a huge support because I've learned so much. I've talked to other caregivers. I've talked to experts. You may be familiar with Barbara Carnes. She's a hospice nurse turned trainer. She's got booklets on
00:34:59
Speaker
End of life care. And now there's a great gal on Instagram called Hospice Nurse Julie.
00:35:07
Speaker
So she's like the younger version of Barbara Carnes. And I've just talked to so many people and I'm still learning things. And there's like recently I recorded with a gal, my mom was the oldest of four and we were chatting about my mom's habit of walking behind me. And I could not get this woman to walk next to me. And it is not unusual for somebody in the later stages of Alzheimer's
00:35:33
Speaker
to basically have monocular vision so if you put your you know make little circles out of your fingers and put them over your eyes that is how they see so there's no peripheral vision if you're standing next to me you're not going to see me oh so that's why they stand behind in order to be able to see you rather than next to you that's what i always do that you know the suggestion is is just to link elbows so that they know you're there and you're you're guiding them but you're not like
00:36:00
Speaker
It's a casual support. Nope, she wouldn't do that. If I slowed down, she slowed down. If I stopped, she stopped. And she watched her feet, also because her visual processing was terrible. She would try to avoid shadows, including her own, which is hysterical to watch somebody desperately try not to step on their own shadow. Give it a try. It's kind of fun, but it's also frustrating.
00:36:27
Speaker
you know, she would step over anything that was like, any change in color, like if the water had gone across the sidewalk, she'd step around that because they can't tell if that's a crack or a hole or, you know, it's, it's really interesting how their brain stops translating the input properly.
00:36:47
Speaker
So this gal, we were chatting and she goes, wait, wait, wait, your mom was the oldest of four. And I said, yeah, why? And she goes, that's why she walked behind you. She was she was walking behind the other kids to keep an eye on them. And I'm like, I wish I had known that five years ago. That is interesting. Yeah, that it had that it didn't have to do necessarily with the Alzheimer's, just the actual habit and maybe of where she was in her mental state. She was probably there, your older sister in that dynamic.
00:37:15
Speaker
Now when you created then the podcast was when your mom was still ill and then how was it then the day you recorded after she had passed away like what was that
00:37:30
Speaker
Because here you are recording something to get the information you wanted as you're caring for your mom and as well for, you know, provide this information for others.
Podcasting Through Personal Loss
00:37:42
Speaker
But how was it for you to record after her passing? Because it's been two years then of you recording after her death. Yep. You know, I honestly think if we had not been in quarantine, it might have been different.
00:37:59
Speaker
It was, it was and is a little frustrating. I didn't get to see her the last two weeks of her life. I did get to see her the day before she passed away, which I know is a huge blessing because so many people did not have that ability. And they did call us the day of and say, come now. And there literally was 10 of us outside her room, you know, at the very beginning of the pandemic when people were like,
00:38:23
Speaker
We don't know what the hell we're doing. What the hell is going on? Like, yeah, poor executive director, again, having a didn't tell us to leave or please go in the parking lot. But he projected that message quite well with outwards. It's pretty funny. I had a great relationship with him.
00:38:40
Speaker
but I actually recorded an episode that morning. So I talked to the hospice nurse, recorded an episode, went downstairs to get some lunch or something along those lines. And that's when they called. So that was obviously the end of March, March 31st. I had,
00:39:04
Speaker
accidentally lined up way more recordings that I really wanted so I had something to focus on other than I'm just sitting here in my house with nothing to do and you know no photography clients because pandemic and mom to visit because pandemic and now she's gone
00:39:21
Speaker
So it was kind of a blessing to have these people to talk to. I should go back and figure out which ones we recorded right afterwards. I'm going to have to do that. Interesting. You had to hear yourself, like, where were you in that space of mind? What kind of questions you were asking at that point? Because here you were navigating your very fresh new grief. You know, other part of the grief part. Because again, you had already been grieving, but just another facet of it. It was gone. Now we have like the regular.
00:39:51
Speaker
Yeah, no, I'm going to have to do that figure out because I know which I could go back and figure that out. But yeah, because look at the dates, probably the dates within the release, it probably would give you some idea. Yeah. Well, it's.
00:40:05
Speaker
I didn't, well, what happened, it was really interesting because at the beginning of 2020, I had a couple of people really, really excited to be on the show. And then they ghosted me. And then one of them came back and she was really, really excited. And then she ghosted me and I thought, oh my gosh. I'm like, I've never had this happen. So this is like two years into podcast. I'm like, never, I've had people say, no, I don't really want to do that. Like a couple people haven't wanted to be on the show, which is fine.
00:40:30
Speaker
and but I'd never been like totally like ghosted I was like jeez this is really kind of weird I better like you know tap my all's author friends because they're always they're always willing to talk you know because they've got books to sell and they have information to share so they're they're wonderful to talk to
00:40:48
Speaker
So I'm like lining these people up and then the pandemic shuts down all our book tours. The next thing I know I went from like zero recordings to like six. Yes. So I had a lot of a lot of busy to keep me occupied.
00:41:04
Speaker
And it was, I think it felt like a blessing because I was still giving back to the community of caregiving. And that's something my mom would have done. And it gave me something to do other than to sit around in the house and feel sad. But I wonder if I had been able to do something else if it would have been different.
00:41:25
Speaker
That's an interesting thought. Yeah, it's so true. You did have something as part, I started the podcast in March 2020 was when I started. So, um, and it was just something to do as we're here, you know, home, my kids were homeschooling quote unquote, well, the school was providing them, you know, so hasn't been working from home. It's like, it just gave me something else to do. But for you,
00:41:50
Speaker
fresh out of that grief experience. It just, like you said, just focused your energy. And it's not necessarily that it's like avoiding the reality, because anyway, the conversations you were having were about the illness that your mom died. So it's a really fresh, you know, grief and then talking. That's why I was wondering, like, how it would be talking to somebody that's going through something you had just gone through. What would you say for our audience would be,
00:42:20
Speaker
some of the so you mentioned for yourself was you know exercise exercise was something that you did for yourself and then creating this podcast what were other tools and community of course you also surrounded yourself would those be the three
00:42:35
Speaker
things
Proactive Caregiving Strategies
00:42:36
Speaker
that you think helped you the most and what other tips can you give the listeners of their caregivers themselves of maybe even some of the things that some of your guests have shared that have helped them as they are caring for an A-Link.
00:42:51
Speaker
somebody with Alzheimer's or other form of dementia. Well, the one thing that I tell people all the time, and I learned it from another podcaster whose family went through this as well, they are the poster family for how to do it right, which unfortunately most of us don't have that, which is not a negative commentary on other people's families. Mine did the best it could. Everybody reacts differently to somebody with this disease.
00:43:21
Speaker
Some people are like, oh, I don't want to see mom like this. I want to remember the good times. And a lot of people think, oh my gosh, how selfish. But when you step back and think about how hard this is, if your psyche doesn't allow you to cope, then that's a fair thing to do, although it's very hard for the people that you're kind of letting down, like your siblings or your other parent.
00:43:43
Speaker
So what I always tell people is you need to put a care team in place right away. And it's really easy to, in the beginning, you just make some adjustments and you move on. Like I would end up supervising my mom at our business because she would take orders with no directions or due dates or any useful information. And it was embarrassing to have to call the clients and ask what the hell we were supposed to do. So I came up with my own coping technique
00:44:11
Speaker
that I hoped, hoped then, still hope that it was not obvious what I was doing. And so it's really easy to put those into place and then you just keep making adjustments, keep making adjustments. And so the next thing you know, your whole life has been succumbed to taking care of this person. And you're like, holy crap, I need help. And now you're kind of trying to put together help when it's a lot harder. It's a lot harder for people to step in. It's a lot harder for your loved one to accept help. So do it early.
00:44:40
Speaker
And the way I suggest people doing it early is to make a list of all your daily responsibilities, your weekly responsibilities, monthly responsibilities. You know, keep adding and revising, not necessarily revising, mostly adding to this list. And then make a second list of everybody you know. They do not have to live in your hometown or be super local. And jot down what you think their best skill would be. Like I tell people, don't ask me to call the insurance companies or the bank, get rid of those people. Hate that.
00:45:10
Speaker
Hate that with a passion like you would not understand. I will bake you stuff. I will make dinners. I can come entertain. I could do a lot of the dirtier work, for lack of a better term. But God forbid, don't ask me to call people because that is not happening. And so when somebody says, oh my gosh, I just heard about your mom. I'm so sorry. Is there anything I can do to help? Boom. You have an answer.
00:45:38
Speaker
You're not going, oh, thank you. No, I'm fine right now. You know, which is complete BS.
00:45:45
Speaker
The other thing that that allows is you've got people maybe providing a couple meals a week. You've got the neighbor kid mowing the lawn and maybe you've got other neighbors that come in and sit with your loved one and maybe the guys watch a football game or the ladies have tea or you've got somebody that comes and helps garden. I had a guest that talked about, because she was in the caregiving,
00:46:09
Speaker
space that i'm in and her neighbor was taking care of his wife and she was this beautiful gardener and so she just went over and said you know i really could use some help with my garden so that woman trotted over there and told her what to do and you know it made her feel good and it gave her husband time off and it just you know benefited everybody the gal learned a few gardening tips she didn't need too many but
00:46:34
Speaker
you know
Preventing Caregiver Burnout
00:46:35
Speaker
it was an enjoyable interaction and it gave her husband a breather and the gal didn't think that she was being cared for or babysat or any of those kind of you know negative terms
00:46:47
Speaker
it also gives you time to deal with just them because you know you don't want to have to bring in somebody to shower them although sometimes it does become necessary because it's because of the weight like we were talking even before even just the weight the size your own yeah and they but they may fight you or like one i think the gal that i was recording with yesterday said she had
00:47:09
Speaker
Um, her husband was trying to like shower his wife and the wife, they thought she thought it was sexy. So, you know, it's like,
00:47:20
Speaker
It gives you a little more space to pivot and do things. But if you are doing all the cooking, the cleaning, the home maintenance, and they're dealing with the insurance companies and the doctors and taking them here, there, and everywhere, because I swear, the older we get, the more places we end up getting to go. You're just so overwhelmed that when somebody wants to step in and help, you're like, oh my god, that's more trouble than it's worth.
00:47:46
Speaker
Don't get yourself to that point because, and we just discussed this on my show in the recording that I did yesterday that's coming out later this summer. It's called the empowered caregiver is, you know, I think it's well, 65% of caregivers die or are hospitalized before the person they're caring for.
00:48:09
Speaker
And that includes Gen Xers, which is us and millennials, not just baby boomers taking care of baby boomers or the older generation. I mean, when she told
Caregiver Health Risks
00:48:20
Speaker
me that that included the younger people, I dang near fell out of my chair. So if you're talking about people in their 30s and 40s dying of strokes and aneurysms and stuff because they're burned out from caregiving,
00:48:32
Speaker
Please don't assume you're not gonna be in that group. Please assume that's happening and do everything you can to avoid that because what's gonna happen to your loved one if you are incapable of taking care of them? And we don't have a lot of good options. If you don't have the money for a care home like my mom did, because those places are expensive.
00:48:52
Speaker
I swear my mom died because her care literally was going up about 30% to $7,200 a month. She's like, I want to save some money. She's like, I'm debt bound. I'm going to be in a wheelchair. This pandemic thing, don't know about that. $7,200 a month for my rent and care. Yep, I'm out. Because literally, that was supposed to take effect April 1. So my mom died in the middle of the day on the 31st.
00:49:16
Speaker
That was my mom. That's not even logical. No positives going on here like I'm out. You're mentioning a lot of things in terms of the person that is then caring for somebody else, just basically being proactive.
Community and Support for Caregivers
00:49:36
Speaker
way before the person gets really ill, knowing who your circle is of support, creating that support, knowing what skills they have. And then for those of us that maybe then are those people that maybe come up and say, how can I help?
00:49:53
Speaker
would it also be helpful like you were saying before somebody may come how can I help of saying by the way I'm good at like you said I'm good at baking cleaning this do not ask me to call the insurance companies but I'm happy that would be what you would probably do if you were the one offering if somebody needed help you would say things you're good at
00:50:16
Speaker
Yeah, especially because you don't want them to ask you to do something that is outside your comfort zone so that you are either forced to do something you don't want to do, which is not great, or you have to tell them no, which doesn't make you feel good. So let's avoid that. But yeah, if you know somebody that's caring for a loved one with any cognitive impairment, one of the things that my sister did that was super helpful, she and a girlfriend would get together, I believe it was once a month,
00:50:45
Speaker
And they would make freezer meals that you then just threw in the slow cooker. That was something my dad was capable of doing because my dad was a terrible cook. And they ate a lot of processed foods, which we know are not good for our brains. So, you know, if you could take a month and get together with two or three people and
00:51:05
Speaker
share ingredients and then split the meals between the two of you and maybe a community member, a neighbor that's taking care of somebody. That's a huge thing. You take that meal out in the morning, you throw it in the crock pot in the evening, or I'm not exactly sure how they managed it, but my dad did just fine. And it was one last thing for him to worry about. His method of cooking was the higher the heat, the faster you got it done.
00:51:32
Speaker
So needless to say, his stuff was in the library. A lot of burnt stuff, a lot of burnt rice in the house. Yeah, this garbage. My technique sometimes, I burn the stuff. Yeah. So yeah, so those are amazing and helpful tips, things that we can all do, not only as someone that maybe is the caretaker, but as someone that maybe is offering some help to someone else that may be the caretaker. Because that statistic that you mentioned of the 65%
00:52:02
Speaker
caretakers that before the person that they're taking that just whoa and I did I do just know someone that that happened and it is now even more blind mind-blowing for me to hear that there's actually that statistic so thank you for sharing that and anything we can do then to help someone that's going that you know going through that
00:52:25
Speaker
It can help extend their life by reducing their stress because stress is a killer and the stress that goes into caretaking is a lot. Is there anything else I have not asked you before we wrap up and then we share all the ways of people getting a hold of you? Anything I did not ask you that you'd like to share with the audience?
00:52:48
Speaker
It would not hurt to be curious and learn more about this disease, to learn more about, you know, how to be an empowered caregiver, how to be a savvy caregiver is a course that the Alzheimer's Association offers for free.
Learning to Support Alzheimer's Caregivers
00:53:04
Speaker
I did take it in person 2019, but they offer it online now and it
00:53:12
Speaker
It would help you help a neighbor or like a distant relative or God forbid, you know, you show up at your parents' house and your dad's mind has gone back to 1998 and it's 2016. And the next thing you know, you're taking care of a loved one and you're like, what the hell happened to my life? You know, be curious because it's, it's,
00:53:33
Speaker
a devastating and horrific disease but there's there's some joys and some interesting you know the journey is not it's not like war the entire time there's there's some the more you understand and the more you know how to you know navigate the disease as a caring person
00:53:53
Speaker
The easier it is for you and everybody else around you and if you have you know a handful of Tools in your pocket and you got a neighbor, you know, maybe you got a new neighbor or one of your neighbors You know now you've realized, you know, I haven't seen John for a while. I bet she's taking care of you
00:54:09
Speaker
You know, Susan and let me go see if I can offer some help because even just sitting with somebody so that their loved one can go do errands or take a nap or go to, you know, take a shower and not have to worry that they're going to burn something on the stove.
00:54:24
Speaker
You know, and if you're comfortable just sitting and being able to talk to somebody with a cognitive impairment is huge. And unfortunately, we are all going to need to know how this how this works much sooner than later, which is terrifying for people like me that have been through it.
00:54:41
Speaker
You know, just be curious. You know, I don't know how many people out there watch. This is us. They've got just just watched the episode. Yeah. Right. Yeah. I was thinking of that as you're saying this because it is educated a lot regarding Rebecca's the character Rebecca. Right. Yeah. Unfortunately, from what I understand, I haven't watched it because it's it's hard for me at this point.
00:55:06
Speaker
having in-home nursing, like they get from what I, there's a caregiver I follow on Instagram and she does watch it and she talks about it. She's like, yeah, that's not the norm. You know, the norm is you're lucky if you get any kind of help. Cause paid caregiving is a, I mean, it was a, um, it was a career that was, it's not well paid. It's not well understood. And there was a shortage of caregivers before COVID. Now it's really bad. So.
00:55:37
Speaker
you know what you're seeing there is somewhat normal but also not entirely the economics of it are not typical so you know just be curious pick up there's like i said go to all's authors you know there's tons and tons of books that you know you can learn something you know some of them are really super easy to read some of them are fiction so there's even easier to read
00:56:00
Speaker
You know, just educate yourself because you will not regret it if you end up with, you know, dealing with somebody in the grocery store. We've got baggers that are autistic. My knowledge of how to care for somebody with Alzheimer's makes it really easy to interact with them. And that's just a benefit for everybody. You know, I'm not getting all weird because the bagger is talking to me about Marvel superheroes that I'm totally unfamiliar with.
00:56:25
Speaker
It makes it easier for everybody. We're a community and a society. We need to come together. Absolutely cannot agree more. Thank you so much, Jennifer. So now, Jennifer Fink, how do we get a hold of you? How can people listen to your podcast, Fading Memories, and learn more?
00:56:48
Speaker
Well, Fading Memories is basically on all of the podcast players. I just started a discussion group that I am hoping to grow over on GoodPods, which is a podcast player that's also got like a social media component attached to it.
00:57:04
Speaker
being an Apple computer person since 1982. I was pretty young when I started with them. It's difficult for me not to just use the Apple Podcasts, but I'm gonna try to build this community, this discussion group over there. The website is fadingmemoriespodcast.com. And if you go on, what is that? Instagram, it's Alzheimer's Podcast.
00:57:31
Speaker
There's a lot of resources on your website because then from there you can click straight from there. There's resources on there that you can click on so it will navigate and take you and I'll make sure to put it then in the show notes so that people can just
00:57:45
Speaker
Click and be able to find the website, connect with you, and also just be able to look at all these resources that you've offered. Thank you so much, Jennifer. You're welcome. Thank you, and thank you to the listeners. Again, this was Jennifer Fink that was on with us today with Fading Memories podcast. Thank you so much.
00:58:13
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:58:41
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.