Support for Caregivers with Jennifer Fink

Join Kelly and her guest, Jennifer Fink, podcast host of “Fading Memories.”

 In this episode: 

🔹 Challenges that caregivers of cognitive impairments face

🔹Working caregivers need support at work

🔹 How to create a care team

🔹 Holiday tips for dementia caregivers

Watch this episode on YouTube:
https://youtu.be/vRTLpQXkp0g
 

Find out more about Jennifer’s podcast:

 https://fadingmemoriespodcast.com/ 

For additional information about Kelly, check her out on Linkedin or www.SteadfastAgents.com.

To explore your options for long-term care insurance, click here.

Steadfast Care Planning podcast is made possible by Steadfast Insurance LLC,
Certification in Long Term Care, and AMADA Senior Care Columbus.

Come back next time for more helpful guidance!

Transcript

0:02 
Hey everyone, welcome to Steadfast Care Planning where we plan for care to live well. I'm your guide, Kelly Augspurger. Today I have with me Jennifer Fink. Jennifer is the host of Fading Memories podcast where she helps Alzheimer's caregivers navigate their caregiving journey. Welcome, Jennifer, thanks so much for being here!

0:20 
Thank you for having me.

0:21
And Jennifer is no stranger to the podcasting world. As I said, she is the host of Fading Memories. Jennifer, how long have you been doing that?

0:29
Four and a half, going on almost five years. I started in early 2018 and launched May 1st 2018, like time is a struggle right now. I'm almost up to 300 episodes, which blows my mind because I keep thinking I run out of topics to talk about.

0:48
Not when it comes to caregiving and dealing with Alzheimer's, right? There's so much material there to discuss. I want you to share with our listeners, give us a brief history of your experience with caregiving, and even what really encouraged you to launch your podcast?

1:05
Well, my mom had Alzheimer's disease for 20 years, my dad did the primary, heavy lifting of caregiving. He was very resistant to having my sister and I help which I still to this day did not understand. When he passed away in March of 2017, I became the primary person responsible for mom. And when I visited her in the care home, my mom really preferred to basically sit around and shoot the breeze, which is fine, you know, chatting. That's cool, except she asked me the same question every two minutes. So what have you been up to lately? And I was smart enough to know, I would tell her because I would visit her Mondays after my Rotary meeting. So I would tell her, "Oh, it's Monday. And I went to the gym this morning and did spin." You know, this was back in the old days when they actually went to gyms. And then she'd asked me again, and I'd say, "Oh, it's Monday. So I went to Rotary. Okay, and then a third time, so then I would tell her who the speaker was at Rotary and then I would tell her, "Oh, it's Monday, so I came to visit you." And then like, the fifth time I'd be I'd put all of the things together, and then I'd be out of information to tell her and being the daughter, I felt very funny about making stuff up, you know, just going with whatever. You couldn't really ask her questions, because you'd be like, "Oh, well, it's Monday, and I went to Rotary and had a really nice sandwich, or whatever we had for lunch that day, you know, what have you been up to?" "Oh, you know, the same ole, same ole" and that'd be the end of it and be like, Well, that didn't help. So, being the curious person that I am, I'm like, okay, you know, let's read some books, let's do some internet research and others, there's got to be a better way to do this than what I'm doing. I didn't have answers, there's got to be a better way. I read books, which is very challenging. I'm a reader, but those are not the kind of books who just rip through. I did a lot of internet research and all of the standard, you know, take old family albums and reminisce about the old days. Yeah, she didn't recognize any of us. Even like my sister is brown hair, chocolate, brown eyes, olive complexion, skinny. I'm opposite. So you would think that when you'd say, "well isn't the blonde one your daughter?" "Well, I don't know," like dear God, you know, and that's painful to hear, but like mentally you understand it, but your heart is like, you know, crying. And so I tried the music interaction. It was just like, this is killing me. Like I'm doing all this research and all you know, reading I'm doing all the quote, "right things." One day, I'm driving to the gym. I had a podcast I was listening to at the time that literally took the amount of time it took to get to the gym. And they were talking about using podcasts to promote your business. I'm like, "Well duh I need to find a podcast for Alzheimer's caregivers or Dementia caregivers." When I went home, and I looked and there was one, I'm like "Okay, better than zero." Unfortunately, for better or worse, it just, it wasn't my cup of tea. So I'm like, "Well, I can do this because I knew I'm like, I cannot be the only family caregiver experiencing this problem, or not relating to this other person's podcast." Caregivers are busy, you know, like parents of children are busy, you don't have time to like, sit there read a whole volume of books, and there are many more books that are much better these days than there were back in 2017/2018. And, to me, this is the ideal way to learn things. You get to listen to a podcast while you're vacuuming the floor. You kill two birds with one stone. I listen to podcasts all the time. It's crazy. Yeah, so that's how fading memories was born.

4:48
Very, very cool. Jennifer, can you tell us some specific challenges that you think caregivers of cognitive impairments face and how people can best deal with these challenges?

4:59
I think well, there's many unfortunately. Stigma is a huge one and fortunately, for better or worse, again, because there are more younger caregivers, more millennials taking care of parents or grandparents, they are much more open about the struggles and the journey and all that. When I started my show, I was very, very cautious about what I shared, of my mom of videos or pictures. And nowadays, I see stuff where it's like, "Really, why are you putting that on there?" So it's interesting because the older generation, like the Boomers, they have a tendency to be a little bit horrified by all of this sharing. And then there's me, the Gen Xers who are like kind of in between, and then the Gen Z are like everything on the air. So it's definitely a generational thing, but I think sharing has been very beneficial because people have built communities, like on Instagram, and you know, they support each other. But a lot of people don't want to talk about what's going on with their loved ones, their loved ones don't want you to tell. People don't understand, so they back away from you because you know it's really challenging when somebody that you've known for 20-30 years is asking you the same question every 10 minutes, or they don't remember your name. And until you've been, I don't want to say trained, but until somebody is explained to you like, this is the best way to interact with my loved one, you know, just do X or do Y and don't ask them these questions because it can be challenging and can trigger a negative reaction. You know, we have to be open to learning how to deal with people who are neuro divergent is the right word because a lot of this also applies to dealing with people with Autism, which I don't even get into on my show, because that's not my area. The other problem is, there is not enough support. You know, if you're working, and you're trying to take care of a parent, and they call you every three or four times an hour, and you're trying to get your work done, and you're trying to appease them or comfort them or deal with a problem they think they're having, or they are having, or they wander out of their house and they get lost, and now you gotta leave work. I mean, you're just literally ripped into two and if you're taking care of you know, you're still raising children, now you're ripped in the three. 

7:29
So there's many people that leave the workforce prematurely. They do basic gig type jobs from home to try and like supplement the income a little bit, but they end up living on like the parents money, the parents Social Security, or it is different in different states, but we need way more support options. I facilitate a support group, that's great, but it's an hour and a half a month. That's only, you know, a fraction of the day. There's just we need way more support, and we need employers to be more supportive. We need our state governments to be more supportive. That's my soapbox all the time.

8:09
Yeah, I agree. I think there's definitely a shortage of caregiver support from all aspects, really, of our community and our culture. There are so many millions of unpaid caregivers across the country and we don't have enough resources and people to come alongside them and give them the support and the resources that they actually need. Actually, before we even started recording this, Jennifer and I were talking and she had mentioned I wish employers would start offering adult daycare for parents, right? A lot, not a lot, maybe some employers offer daycare for children, but what about even adult daycare for parents? Being able to have your parent on premise or even nearby? How helpful that could be if they're actually relying on you for care? How that could be extremely helpful to some unpaid caregivers.

9:02
Or the other thing is when you commingle children, and you know, grandparent aged people, even if you have a cognitive impairment, you may be very happy to play blocks for a long time with a young child. Whereas, you know, you and I are probably like, "Oh my God, I don't want to do this." My daughter just turned 31, so I still remember some of those days. I interviewed a church that had a program, they had an adult day program, where they brought in the morning, they brought over the preschoolers and the older adults played with the kids, read to the kids, if they still had the visual processing skills for reading. In the afternoon, they would bring over like fifth graders, and some of the men that were there could help with, you know, homework, some of the women could too, you know, and it was sort of like grandparent grandchild time, even though they weren't blood related. In talking to their director, the one thing that I learned was the children are benefiting, the older adults is benefiting, but guess who was also benefiting? The caregiver in the middle because they're boosting each other! The children are boosting the older adults, the older adults are boosting the children. You know, then you take your child and your parent home, and they've had this really great day, and now you're not dealing with you know, sundowning, or toddlers melting down or God forbid both.

10:28
What a cool concept! 

10:29
Yeah and it's like "Why do we not have that? Why is that not more of a thing?" I mean, we have a childcare shortage and we have a, you know, caregiver shortage in this country for older adults. And it's just getting worse and worse and worse, and COVID made it worse, but I was gonna go back to your statistics. So according to the Alzheimer's Association, there are over 16 million unpaid family caregivers for Alzheimer's, patients isn't necessarily the right word, but for for this, we'll use that one, and I know for a fact that's an undercount, because I didn't consider myself a family caregiver until I went to my first support group. And she said, even if your person is in the care community, you're still a caregiver. I was like, "Oh!" So I can guarantee you there are many spouses that are not considering themselves caregivers and we give almost, and this number is we're almost up to and surpassing a trillion dollars in free care every year. That's why we don't have more support, because who the heck wants to pick up that tab?

11:30
Wow, well, an insurance policy, if you have an insurance policy and you meet the contract language, they're picking up the tab. So that is a good reason to look at insurance. 

11:42
And now for a brief message from our show sponsor. The Steadfast Care Planning podcast is sponsored by the CLTC, Certified in Long Term Care, training program, which gives financial advisors tools to discuss extended care planning with their clients. Look for the CLTC designation when choosing an advisor.

12:00
Back to the caregiving, I totally agree that I think many people that are caregivers don't even consider themselves a caregiver because maybe their family member, their loved one, is not in a facility, or maybe they are in a facility, but they're just doing some daily tasks, like maybe they're going to the grocery for them or taking them to some medical appointments, but they don't really consider that caregiving because they may not necessarily be providing hands on care. Well, guess what? That's still caregiving. I mean, that was me. I helped my Mamaw for a couple of years, part time, when I was in my 20s and I didn't consider myself a caregiver at the time. So you know, looking back, I know, that is what I was doing, but I didn't consider myself a caregiver, but indeed, that is caregiving. Helping someone with these tasks, there's different levels of caregiving, and that is included.

12:56
Well, the other thing is, it takes a toll. 

12:58
Oh, definitely. Yes. 

13:00
The one thing that's my other soapbox, I have many soapboxes, but one of the things that I try to tell caregivers all the time, family member, if you want to age well, this is a tip to listen to. If you think your person is starting to have issues with their memory, you're probably right. Pay attention, start making notes like my husband, I think because he was basically off of his feet for weeks and now he's not, and I think he's running around. He's trying to get to do all the things he couldn't do. He keeps repeating stories to me, and it's freaking me out because obviously, I have a very negative history with repetitive stories. Make notes and I've told him, you keep telling me the same story. It's starting to concern me. I think he's just not paying attention, but I'm watching him and if you do know, or you've gotten a diagnosis, these are the steps that I tell people to take to put into place a care team. And people think, paid or that's somebody coming in and doing things for my loved one and they get very resistant, no, no, keep listening. You want to write down the list, everything you have to do in the household today. Then add to that list everything you need to do every week. And then you make a list of the things that you have to do monthly and then include standard type appointments. Now you've had a list of all of your responsibilities just to maintain your household and the people in it for a month. Now you're gonna make a list of everybody you know. They do not have to live in the same town as you, do not have to necessarily be family. Make a list of all those people and right next to it right what skill you think they would be best at helping you with. For example, I'm really good at baking, I make great meals, sorry, but if you asked me to deal with insurance people that's no way. I do not. 

14:56
That's a different person.

14:57
That is my husband. I mean I don't know what it is, but like 15-30 seconds on hold, and then they start asking me all these super annoying questions. It just it goes against my personality. I know this.

15:11
I think that's a great tip, Jennifer. You want to create a care team, even before there's a care event, right? Things that you want to talk to your family about, your spouse, your extended family, your adult children. Okay if and when the time comes that I need some help, who is going to be a part of this caregiving team? Who is going to physically provide care? Are we going to hire professional care? If we do, who's going to supervise that care? Who's going to coordinate care? Who's going to drive to appointments? Who's going to prepare the meals? I love that being able to really have it documented, written down. This is our game plan, everyone needs a plan for extended care I think regardless of any other thing, right? That may or may not include insurance, but everyone needs a plan for extended care and having this document will help in that caregiving continuum.

16:04
Well, it does two things. One, you're not trying to make arrangements in an emergency. I've been there, not fun. When you have to pick a hospice, or in-home caregiving company in a 24 hour window, you just pray that you don't screw it up that you don't invite mass murderers or thieves into your parents home who live 20 miles away. The other thing having this list does when you know, Jennifer comes up and says, "Oh my gosh, I'm so sorry to hear about your MaMaw, is there anything I can do to help?" Bam! You have an answer, and you have an answer that will likely not overwhelm them, or make them feel like they're getting sucked into this abyss and I use that word because a lot of people, that's what happens, you know, you have a medical emergency, you handle it, you make some adjustments, you move on, and the next thing you know, 2, 3, 5 years down the road, you're up to your eyeballs in juggling your home, your job, your kids, your parents, or you know, just your spouse in your own health, like in my dad's case, and you're like, "How did I get here?" This is like hell, you know, it's like, I love my person, but what happened to my life? Don't I matter?

17:22
That's just it, it's your life is almost put on hold, your responsibilities, your goals, ambitions, all those things really pause because you have these pressing responsibilities of, "I have to help, or I have to coordinate" whatever the case may be, "I am really needed" and so what does that mean to your family, to your spouse to your adult kids? Does that mean you're not, going to your grandkids games? Because you now have these other responsibilities or your kids games? Because you have these other responsibilities. Are you giving up time at work because you're needed in the family? And what does that even do to your retirement and your financial plans? Right, we really I think, are in a caregiving epidemic. That is a serious problem that we need to address on many different levels in our country. Yeah. And I just applaud you that in your podcasts because I know you are addressing a lot of these issues like how can we come up with a better game plan? How can we care for the caregivers?

18:28
Yep. I mean, I was blessed. My dad had, investments, my parents home was paid for and even though my husband is a real estate broker and a property manager for other people, we don't have any real estate other than what we live in. We were gonna sell my mom's house. My mom was 74 and my maternal grandmother lived to 91 with vascular dementia. So that's a long time. That's 15 years. Yes, I'm in California, but their house was built in '70. It was like, how much money are we really going to get? And will it last? Because that's what happens. People sell mom's home. They put mom in a care community, and then they run out of money, just at the time when mom needs the absolute most 24/7 hands on toileting, bathing, feeding them, all of those things. Now you move that person into your home, and they are literally a 24/7 responsibility, and you can't do anything else really, because if you don't hire somebody to come in and help you. Yeah, it's just a nightmare. So we actually, a CPA friend of ours, said, "Well, you should really rent out your mother-in-law's house" and my husband's like, "Duh." So even when it's your own business, when it comes to family, you don't always necessarily have the cognitive space to think about all of the things because it's just it's overwhelming. So we rented out her house, her Social Security and a little bit of money from my dad's investments, gave her plenty of money to live. She did only live for three years because she fell and broke her leg and it was still super expensive, so I feel very blessed that we could do that because her living with me was not an option. And my sister already had her in-laws, but you know, we needed something other than mom living with me and everybody being unhappy or spending $7,000 a month and then when she fell and broke her leg, well, we spent $6,000. She fell and broke her leg, she ended up bed bound. Her Alzheimer's had progressed, she needed more help. So literally her rent and care fees eere going from $6,000 to $7,500. I kid you not, I think my mom had a moment of lucidity when she said, "I'm bed bound, I'm gonna have this wheelchair, this pandemic thing is happening. This rent thing is just out of control, tappin out," because she died March 31, 2020. The new rent was supposed to take effect March or April first.

21:03
I think the key takeaway from what you just said, Jennifer is we want to come up with a plan, not only a financial plan of how we are going to pay for extended care or provide extended care, whatever that looks like. We need to come up with a financial plan and we need to come up with a family plan. They go hand in hand. How are we going to pay for it? Where do we want to receive care? And who's going to provide that care? Those are really three big things that all families need to consider.

21:31
And you also almost need to consider it in stages, like early on, yes, you can care for them at home. You may need a little bit of support, that may be family and neighbors, might be easy enough to put in three or four, maybe five people to do that, but as their disease progresses, you're going to need a little bit more help, they're going to need more help, you can probably still keep them at home. The longer you can keep them at home safely and healthy, the better, but don't automatically assume that a memory care community is just a horrible place because it isn't. My mom had friends. My mom did things there that she would not do with me like the exact same activity. I got the big "Nope," but she would go and do it with them and so she had more engagement, she was involved with more things than she ever would have been with me. So it was definitely a blessing, but I know another podcaster she's also a filmmaker, her mom was in a five star private pay care community in Southern California. I'm in Northern California, they gave her mom a medication that is like an anti-psychotic that just overnight made her bed bound. And my friend Suzie the filmmaker has made a film called "No Country for Old People" based on her mom's experiences. So even a good care home you know...

22:52
You need to do your research. 

22:55
Yeah, you definitely need to do your research. Everyone's situation is different. What what might be really great for one person or one family is not necessarily going to be the right fit for another person. So really working with professionals, that are facility locators or home care agencies to figure out care coordinators, what's the best plan for each person I think is really critical. 

23:16
Well, Jennifer, holidays are coming up which there can be highs and lows with that together with family. Can you give us maybe one holiday tip or trick when dealing with either a dementia loved one or being a dementia caregiver yourself?

23:35
I can because I just went through this with somebody who was devastated. She had planned this beautiful Halloween for her and her mom, her mom's in the middle of stages of FTD, so that's frontal temporal dementia. So it has a tendency to affect behavior and personality more and her mom was just not a nice person and she was devastated. And I said "This is going to be tough love to hear, but I've gone through this, the holidays can be super overwhelming." You've got blinky lights and music, it gets dark sooner. I mean, take a step back and view your home, restaurants every place decorated up for the holidays, it is super overwhelming. And if your brain is processing things slower, which is what happens, it's like a firehose of stimulation and so it would not be hard to understand why they would react badly, get agitated, you know, just all the negative things. So keep that in mind. Keep, you know, interactions, you might have to have smaller family gatherings, more of them, shorter spaced out, give them a place where they can go get away from the chaos because we know the holidays are chaos, no matter how quiet they are. There's still chaos. And when they get into the later stages it is okay for you to have your own celebrations. Like I went to my mom's last Christmas, I didn't know it would be the last Christmas. I had finally started listening to guests because they kept saying "You're doing the visits too long. That's why they don't end always real nice." So I thought, okay, I picked my mom up and my car drove from the memory care around the building to the assisted living dining room, the main entry, we walked in, we had a beautiful lunch, they had fantastic food, I gave her one gift, she was thrilled. We had a nice conversation, I put her back in my car, drove back around the building, escorted her into the memory care, gave her a big hug, told her I loved her, wonderful memory, right? And then I can have Christmas with my family and friends, and not feel guilty because my mom did not know it was Christmas. Trying to involve her on a day when, you know, you're trying to make your own memories, you're trying to have your own traditions, you're trying to have special times, and you're dealing with this person who's confused and overwhelmed. You know, it just it doesn't work. And so you either have to find a way to keep them calm and feeling happy. Or you just have to separate traditions and holiday, when you do your things, because the next week, I did the same thing with my mom, but I picked her up, we went to my Rotary meeting where the high school choral group sang which is beautiful and I took her to the downtown park where they had probably 30 or 40 Christmas trees decorated from each business. So they're all super unique. Worst memory possible because she literally looked like a whipped puppy. I mean, we were the only two people in the park we're outside, so there wasn't lights and noise and chaos and confusion, but she just looked so unhappy and that's one of my last memories. Like my mom amongst all these beautiful Christmas trees, looking like I beat her with a stick. Like you don't want to do that. So my mistake.

26:56
Over stimulation? 

26:58
Too much stuff in one day and having these high hopes.

27:04
I think that's great final advice, Jennifer, on how people can plan to live well, right?
Going into the holidays, let's maybe even lower expectations and give yourself some grace. Think about what might overstimulate the care recipient. And keep that in mind when planning these events. And it's okay to take time with just your immediate immediate family. Maybe that's your spouse, your kids, if you're caring for a parent, but being able to have almost these times that are separate. Everything doesn't have to be all at the same time.

27:36
Yep, it's hard. It was hard not having her on Christmas Eve or Christmas day, but it was also a relief, which also felt guilty. So you know, you're gonna have all the emotions and you have to balance what's right for them and what's right for you. And you cannot relive your childhood with your parents if they are suffering from cognitive disease. I would assume the same thing as if it was your spouse, but that's not been my experience. So that's probably a little different.

28:02
Sure. Well, Jennifer, where can people find more information about you and your podcast Fading Memories?

28:07
Well, you can go to FadingMemoriesPodcast.com. I'm on all the podcast players and I put out an episode every single Tuesday, which is insane, but I do. Caregivers don't get breaks so I don't take them either.

28:22
Right, right. Well, love it. Jennifer, thanks so much for your time. Really appreciate the wisdom and the experience that you have and sharing it with all of us today. Really appreciate you. So thank you!

Thank you!

Have a good day. 

You too.