Personal and Professional Lessons in Dementia Care with Jen Riggs

Jen Riggs shared her powerful journey of finding her true calling, supporting seniors and especially those living with dementia. After spending years as a stay-at-home mom, she pursued a career in commercial baking, only to have a major back injury end that chapter. What felt like a loss at the time became a turning point. Her cousin, a nurse at an assisted living facility, encouraged her to apply for a front desk position—and that’s where everything changed.

Jen immediately fell in love with the residents, their families, and the entire community. She found herself especially drawn to those living with dementia. These moments inspired Jen to learn more. She became a Certified Dementia Practitioner, facilitated support groups, and embraced the teachings of dementia care expert Teepa Snow.

Jen also opened up about her personal experience with her father, a brilliant man whose biggest fear, losing his cognitive abilities, came true. After years of estrangement, they reconnected just as he began showing signs of dementia. She described the heartbreak and challenges of navigating his care, but also the beauty and connection they found together. This experience solidified her purpose: to help families through these overwhelming experiences.

Now working with Dementia Family Support, Jen offers education, family counseling, and helps facilities build supportive dementia care cultures. Her message is clear: no one should go through this alone. Dementia doesn’t just affect one person; it impacts the whole family. 

Jen encourages caregivers to ask for help, build a village of support, and know that it’s okay to struggle. Through her work, she helps others find strength, connection, and dignity in one of life’s hardest journeys.

www.dementiafamilysupport.org

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Transcript

Jen: [00:00:00] What little systems we have in place for those living with dementia, they only focus on the person that's living with dementia, and this really does affect every person that's involved in their life because it's such a challenge and there's just so many characteristics and so much that comes along with this disease.

Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach. Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects.

I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true. In this episode, Jen Riggs shares her inspiring journey. From stay at home mom to certified dementia practitioner after taking a front desk job at an assisted living facility, Jen fell in love with supporting seniors.

[00:01:00] Especially those living with dementia, she shares how personal experiences, including caring for her estranged father as he faced cognitive decline, deepened her passion and purpose. Jen talks about the heartbreak, healing, and connection she found during that time and how it shaped her mission to support families through the challenges of dementia care.

Now working with Dementia Family Support, Jen offers education, counseling and guidance to help caregivers and facilities create a more compassionate environment. This episode is filled with wisdom, resilience, and the power of building a strong support village. Thank you for joining us for this conversation.

Welcome, Jen to the podcast. I'm really excited we actually know each other in real life. We've had lots of conversations over the last few years, but I know you've kind of gone down a new path in your career. Well, I know you've been kinda dabbling in it a little bit, but now you're making it your main focus.

I wanna hear all about that. But then also, why don't you just tell us a little bit [00:02:00] about who you are. Are you originally from New Jersey? I'm not even sure. So I am Jersey, 

Jen: born and raised, south Jersey. It's one of those things where my life has kind of been, you know, a, a, a tinkerer in a lot of different avenues until I found my true calling, which was working with seniors and definitely understanding and working with those, living with dementia.

It's kind of funny how life puts you on the right path, whether or not you are aware of it. I came to assisted living and senior lifestyle in a time of my life that was actually a little bit on the dark path. I was working as a commercial baker. I absolutely loved it. I was a stay at home mom for most of the time.

My kids were growing up and as they got older they needed mommy's wallet more than they needed mommy's time. So I decided to go out and get a courier. And I was loving being Jen again. I loved being a mom. I loved being a wife, but at [00:03:00] a certain point, you lose your identity to kind of go out and do my own thing, and I was excelling at it.

Unfortunately, my body was not a big fan of what I was doing. It was a lot of physical labor of lifting 50 pound bags of mix and adding eggs and oil. Doing that over and over again, I wound up having to get major back surgery. I wound up having two discs replaced and the lower part of my spine fused. The surgeon said, three months you'll be back on your feet.

You'll be fine. Well, that wasn't the story for me. Unfortunately. I scarred along my sciatic nerve. I wound up in more pain than I actually was. Used to, and I just physically couldn't go back to that work. There was a loss and it was frustrating and there was a grief with it, but little did I know that was the catalyst for what I really was meant to do, working with seniors.

My cousin at the time was a nurse at an assisted living. She said, you know, we're hiring for the desk. You should [00:04:00] apply. I said, you know what? Why not? From that moment, I fell in love. I fell in love with the residents, with their families, with the whole culture, and it was one of those things where I just naturally started gravitating to those that were living with dementia.

It fascinated me the way the mind worked. I had one of my residents, Rosie, who was the cutest. Little lady I've ever met. She would have conversations with the air, you know, think that she was talking to her sister, to her, her husband, and you know, she was my buddy. She would sit at the desk. She thought she worked at the desk and I was invading her space.

And you know, she actually one time was like, you know, I'm not gonna come to work anymore if you guys don't start paying me. So I started creating fake checks for, it was just. It was so cute, but it also was like, why is this happening? And I wanted to learn more and I just started to [00:05:00] research on my own.

And then I wound up getting the opportunity to get my certified Dementia practitioner certification. I started facilitating support groups and that's when I found Tepa Snow and. Just really loved the way that she approached dementia and the way that she brought some dignity to this diagnosis. And from there I started, you know, growing in my career.

I was able to go actually train down in North Carolina at her foundation to get my first certification, which was trainer. Then, because I'm a junkie, that wasn't enough. I went back for a consultation certification. Then this past year, I just actually did my coach certification. I'm sure I'm not done, but all the education in the world wasn't enough for me to be where I am today.

That came from working this journey with my father. Life puts you on the right path, even though you [00:06:00] don't know it. My father and I were estranged for quite a few years because of family dynamics. Not every family is perfect. When we reconnected, one of the first things I picked up on was that he had some cognitive impairment.

Knowing my father, knowing how much that was his fear, my father was a certified genius, biggest brain I've ever met in my entire life, so for that to start failing him was a nightmare. I started to watch that he did a lot of sundowning and it went quickly from, he was managing it, living with his girlfriend, kind of not aware of the changes going on cognitively to crisis, where he took a joy ride in the middle of the night.

It wasn't until. Months later when I got the toll violations that I realized how long he was actually out on the road. I got the call about six thirty, seven o'clock in the morning from the hospital. He had found himself in Vineland. Wound [00:07:00] up following some gentleman into his place of work, which was a glass factory, and said, I don't know where I am, how I got here.

At that point, he didn't even know his name and they called 9 1 1. The ambulance took him to the hospital. It was eyeopening because I knew there was cognitive impairment. I knew he was at risk, but we now had to put some action into place and make sure that never happened again. God forbid he didn't do what he did and he found himself in Vermont or anywhere else in this country.

So it was very scary, but you know. The emotional toll it takes is something that nobody ever prepares you for and a book can't teach you. You just have to walk that path. I realized that was why I was put on my path, was to be able to be there for others because what little systems we have in place for those living with dementia?

They only focus on the person that's living with [00:08:00] dementia. And this really does affect every piece of the puzzle, every person that's involved in their life because it's such a challenge and there's just so many characteristics and so much that comes along with this disease, a part of being able to support somebody through that journey.

So. I now am working with a company called Dementia Family Support, where it is a comprehensive place, whether it is family counseling, disease education, understanding the process that's going to come down the road, even working with facilities to build a dementia culture that really does utilize Tepa Snow's positive approach to care and bringing.

The methodology of working with somebody rather than doing two or four them. And that's kind of my, my new gig and a long story to get to the end goal. 

Jill: And actually, so that's interesting. I don't think I knew that you were into baking. 'cause that's what I used to do. I used to in a bakery in Vineland where your [00:09:00] father ended up.

And I grew up in Vineland. My grandfather worked at the glass factory, then violin, so your father probably wandered into the factory my grandfather used to work at. Baking is brutal on your body and it's a nice career. For some reasons. Also, it is very hard. I'm sorry, that you had to go through that with your surgery and then, you know, having even more pain afterwards.

You know, it's, yeah, that's never pleasant, never fun. But you're right, sometimes we need those things to push us on the path that we're supposed to be on, because even for me, teaching, baking and then working with people, dealing with a lot of trauma, death, and grief, and it was not being. Handled well, right?

Because we weren't giving them the tools, kind of is what pushed me on my path, uh, to end up working with people at the end of life. So it is funny how sometimes that happens to us. And you mentioned, you know, that one of the first [00:10:00] things that you kind of were noticing about your dad was like, sundowners.

What is that for people? I have a basic idea of what it is, but what is that for people that are like, well, I've never even heard of that. The sundowners. 

Jen: I'm glad you brought that up because one of the things I see from coaching families is that they used the term, but they don't really understand it, and Sundance comes with that.

People usually later in the afternoon, start to show some more characteristics of cognitive impairment, heightened confusion, word finding issues, sequencing issues, hallucinations. A lot of times they think it's just environmental, but the truth is. Another word for sundowning is exhaustion, and you're dealing with somebody with cognitive impairment.

If the normal brain is revving at 25 miles per hour, somebody with cognitive impairment to do the very basics on a daily basis, their brain is revving at 50 plus miles per hour. So when they get to that [00:11:00] afternoon hour, they're at the end of the line. They have very little gas left in the tank, and so they.

Artis chops of just being wiped out and you know, if you ever think of those times when you had a baby and you're getting up in the middle of the night and you're just at that point where you're almost delirious, that sundowning for somebody with cognitive impairment. 

Jill: Well, interesting. Had never really thought of it that way.

That it requires people with dementia, so much energy to function. During the day that by the time they get to the evening they're exhausted. Some of the things they were able to fight off during the day with a lot of mental energy. When you're exhausted, you're just like, I'm done. I can't with this anymore.

So that makes a lot of sense. Unfortunately, that is when it's hard. It's like you said, your dad drove away in the middle of the night. That's when. The rest of us, even as the caregivers or the people that are involved, [00:12:00] are also exhausted because we've been doing our regular day to day. I'm sure you see this a lot with the sandwich generation.

We still have kids that need us. We still have jobs. It's not like we're able to say, oh, okay, my. Parent or my spouse in some people's cases. I know some people get dementia earlier to say, well, I'm just gonna drop everything and be their full-time caregiver. Doesn't work that way. For most people. It is very difficult.

You did mention there being lack of support for the people that help care for somebody with dementia. Like what? What can you do for stuff like that? Is there resources? Is there organizations that do training? Would that be somebody like you? Would you come in and help the family? How's that working?

Jen: There are great resources like the Alzheimer's Association, but if you don't know what you don't know, then you're stuck. We need more organizations like Dementia Family Support to tell families that there is. A way to get the village [00:13:00] that you need to back them up. Dementia is such a unique disorder.

Even somebody who has the same exact dementia diagnosis will have very different reactions and characteristics and different, you know, disease process, timeline. So you need. That ability to adapt and refocus your energy, you need that by being able to take care of yourself. It's too much to fall on just one person.

You need to build the village, and that's where you know, really being able to reach out and to say. It is okay to get support during this journey because you're gonna have good days and bad days. Just like somebody with cognitive impairment, they have days, they really shine and then they have days they're really struggling just to do the basics.

And as the support system, the teammate and the people that love them, we go through that journey too. And we have days where we shine and then we have days that we're just very human and we, you [00:14:00] know, fla around and that's okay. That's when you may need to take a time out and say. I need somebody to help in this situation.

Or maybe it's just an event that this disease sucks. It sucks to lose your loved one day in and day out because that's unfortunately part of this disease that it never gets better. It only gets worse. And just when you think that you have it all under control, they progressed and it's like you're starting right from the start line again.

You need somebody that's gonna be able to give you a hug and say, you know what? I'm in this with you. We do need the 

Jill: village for a lot of things that we don't really have anymore. Early motherhood, we could really use a village. Doesn't matter how old you are, when you have those little ones, like you said about feeling like we lose ourselves and it's okay.

You know, like I'm sure there's some people that might listen and be like, but that's what happens when you have kids. Like that's the way it's supposed to be. Yes. But that doesn't mean we [00:15:00] couldn't use a little more support because both things can be true Then. You pointed out about you and your father being estranged even before this, and that's something that adds a whole new dynamic because so many of us have complicated relationships with our parents, even if it's not full on estrangement, I.

We have these complicated relationships, the medical community is like, well, you're the one that's gotta take care of 'em. You know, like people even going on hospice, they think like, hospice means, oh, we're gonna have somebody there 24 hours a day. No, you are gonna be there 24 hours a day and somebody's gonna maybe show up for an hour once a day and help you.

But you know, you add in those complicated relationships and especially with something like dementia, that can be so. Frustrating for everybody involved. How did you navigate that? Because I know we had talked a little bit throughout some of that process while you were going through it before your father had died.

What was that like for you navigating this [00:16:00] new relationship with him that also is diminishing at the same time? You have both things happening. 

Jen: It's actually beautiful because it was one of those things where at the very beginning I did struggle. It was like, do I go left or do I go right? Left would be, you know what?

There was just too much dynamics and I wasn't really going to walk this journey with him or I go, right? What I wound up choosing is I would do this for a complete stranger. How could I not be there for my own father, despite anything that happened in the past? All the dynamics, why wouldn't I do this?

And so I made the decision and I said, you know what? I'm gonna be there and I'm gonna support him no matter what that looks like. And I'm so glad I did because even though it was hard and there was definitely trying times, I mean, my dad was a tough cookie by nature being so smart. I think sometimes he had very little patience for the rest of us because we sometimes do dumb things and say dumb things.

[00:17:00] Now my dad's biggest line was Engage Brain before opening mouth. And I didn't do that very much. So it was one of those things where, you know, I knew there was moments where he, he really was a, a tough person to be around, but I knew it was a lot of, i, I blame the disease and that was where I started to put those, those negative feelings to the disease and not to my dad.

And what was beautiful about it was that I got to have this great relationship with my father that. I, I cherish one of the things was giving him the best quality of life for whatever time we had left. 'cause that was the biggest thing that I realized as having the, the foundations of dementia, is that it is a terminal diagnosis.

Somebody is going to pass away from dementia. That death can look very different from person to person. It could be a catastrophic fall because [00:18:00] their fine motor skills are impaired. Or it could be aspiration pneumonia because their mechanics. To swallow properly is altered, or it can be just a disease process and the body stops regulating its blood pressure, its heart rate, its breathing rate.

In my dad's case, he was a type two diabetic and he wound up getting a foot wound that wound up going septic and. You know, being able to keep him safely off that foot was not conducive to the quality of life for him. I wasn't gonna restrain him to a bed. I wasn't going to do some of the things that would've ensured there was any opportunity for that to truly heal.

I. So we were on borrowed time and my goal and my focus was how do I make whatever the amount of time we have left count? And you know, I had wound up asking him when we were in the hospital for his foot, I said, all right, dad. Bucket list time. Where are [00:19:00] we going? I have to say he loved The Bahamas, so I was really hoping that that was where he was going to say, but instead, he set his old stomping grounds in Vermont and I was like, oh, I can't go to the cold weather.

But we did. That was our focus and that got us through, he had to go to rehab after Another side of why Dementia Family Support came about was because I got so frustrated with the medical community that wanted to treat him, despite not acknowledging that there was cognitive impairment. I remember him being in the hospital and the surgeons coming in and they're like, okay, we're gonna amputate part of his foot and then we'll retrain him how to walk.

And I'm like, wait. You do understand my dad has Alzheimer's and vascular dementia and that we're at a, a crossroads that how do we keep him safe through this? And they were like, oh, it'll be fine. And I'm like, no, it's not going to be fine. What happens when he's non-compliant [00:20:00] and after you amputate his foot, how long is this gonna be without him weightbearing?

They're like, oh, six to eight weeks. And I'm like, how do we keep him off that foot for six to eight weeks? And they didn't have a good answer. When he isn't compliant, what happens? Well, if he puts pressure on the foot, he could bleed out. So where, where does this work? And I had to raise the flags. I worked for Rothko at the time, and I had a great social worker, and that was our elder care coordinator.

I. Went to them pulling my hair out and they were like, stop, ask for a palliative consultation. And I did. And we'd already had him on hospice because I know the benefits of hospice and a terminal diagnosis, but a septic wound could be something that we could bounce back from. So I wound up pulling it, but then I was like, okay, so we went to palliative route.

Long story short, he was able to go to rehab. They went in and cleaned out the wound as much as they could. We did everything but the amputation because [00:21:00] I wasn't gonna do that to my dad. And even the healing process for what we did do was a challenge. He had a wound vac that he kept pulling out, and right after surgery, he just kept wanting to put pressure on that foot, and it was a challenge.

I got him through that by saying. Dad, our focus, we're going to Vermont. Oh, we're going to Vermont. I'm like, yep, we're going to Vermont, but you gotta get better. And that became the trick in the rehab when he was having an off day. They'd be like, remember Jen's taking you to Vermont? You gotta get better, so you gotta stay off that foot.

And he was like, oh yeah, I'm going to Vermont. And we did. We went to Vermont and it was a labor of love. We drove and I can't tell you how many times I got. Jen, don't get so close to that car. Do you want me to drive? Jen, you're going too fast. The eight hour drive felt like 18 plus. We had to stop for potty breaks, but when we got there, I took him to his old stomping grounds.

He was a musician. He was in a band called Adam, and one [00:22:00] of the places he played was called the Pickle Barrel. The light in his eyes, the smile on his face at this point, his foot was giving him a lot of trouble. But for those couple of hours that we were there, it was like the foot was miraculously healed.

He was dancing, he had a beer. It was just a moment that was worth everything. It was worth the travel. It was just beautiful, and that was one of the things that I wanted other families to embrace. Stop looking at the challenges of this disease as why you can't. Do something. Look at it to why you should do something.

Why you should make these lasting memories. Yes, you're remember, but you always will. And it's something that somebody can't take away from you. And I'm telling you in that moment, my dad was clear as can be. He was back, his soul was there. I have a frame that my daughters [00:23:00] bought me or for my birthday. It has pictures from the pickle barrel that comes up, and every time I see that twinkle on my dad's eyes, it just brings me back to the way I felt watching him just be so happy in that moment.

Jill: I remember when you took that trip and you were posting pictures on Facebook, and we've known each other for a while, so I knew that you had some of those issues with your dad and we're navigating this whole thing to see that you had been on that trip and you all looked so happy. It really did look like you were enjoying.

That trip so much. I really loved it. I was very happy to see that for you and hearing you talk about your experience. It's so different than the story that I hear from so many people, even about being in the hospital and the doctors being like, we have to amputate. And of course, because people don't know better, they do it.

And then it leads to so many issues. Your dad probably would've had to have been restrained because he would've kept trying to get out of bed [00:24:00] and that wouldn't have been safe, and that would've been the end of his life. Versus we can clean it up as best as we can and take him on a trip and enjoy whatever life we have left.

We're so afraid of death and we're so afraid of dying that rather than saying, okay, we're on this amount of time. Let's enjoy that time as best as we can. We don't have that knowledge and that understanding, which is why people need people like you and me to help them navigate this whole thing. And I'm thinking too, with dementia, I.

Most people know Alzheimer's. Like Alzheimer's is dementia, but dementia is more of like a umbrella term. Right? And then there's multiple different kinds of dementia that all have different symptoms, different ways of having to care for people. Right. What's that look like? So people listening can understand better.

Jen: Absolutely, and I'm glad you [00:25:00] brought that up. It's true that dementia is the umbrella term for a syndrome based on a diagnosis, and there's actually 150 plus diagnosis that have that characteristic of cognitive impairment being dementia. Most popular Alzheimer's and people like to interchange dementia with Alzheimer's, but that's such a a mistake because it is like saying.

Interchanging sports with baseball. You know, yes, baseball is a type of sport, but it's not the only one, and that's the same thing when it comes to dementia and Alzheimer's. There's vascular, there is frontal temporal lobe, there is Lewy bodies. I mean, there's absolutely there. There's certain ones that actually affect cods.

I mean, nobody is safe from this. Just syndromes nobody's safe from, from cognitive impairment. And, and it, it, it one of those things that is just becoming more prevalent. I mean, we have 55 million [00:26:00] people in the world right now diagnosed with some form of dementia, and they're saying with the statistics that by 2050 that number's gonna triple.

The sad part is that that number is scary. The good part is that a lot of that is because we're living a lot longer than we once did. You know, they say the generation that's coming up now is going to see triple digits as an average rather than a milestone, and it's one of those things where the brain just isn't built.

To go that long. I mean, the peak brain age is actually between 25 and 30. The point it starts to kind of slow down and deteriorate. I always tell people when I do a training, if anybody's ever seen the movie, Bruce Almighty. When he's up talking to God and he pulls the filing cabinet out and it just keeps going and going and going, well, that's our brain.

Think about how much data we put into it on a daily [00:27:00] basis. Now times that by how many days you've been alive, and that's a lot of data to sort through. And when you're talking about dementia, it's actually. The brain is dying. It's failing, so it's harder to get to that data or that data is actually missing, and so you struggle with it no matter what diagnosis you're talking about.

There's four truths that come along with that word dimension, and that's that at least two parts of the brain is dying, that this is a chronic disease that you will not get better from. It's progressive that it's going to get worse. Even with some of the scientific breakthroughs we have and some of the medications, it can slow that progression, but we have nothing that's able to turn it around and make it go the other way.

And then the fourth truth, which I already kind of mentioned, is that it is terminal. So when you [00:28:00] look at that, that's really the point that when somebody hears that word dementia, I want them to think of those four things and realize that the person is doing the best they can. Despite having those limitations, it's our job to be able to support them.

Where they are and walk that path with them and still bring dignity. And the biggest thing is that there is still a person there and a soul. There's a beauty to dementia too. The right side is a little more retained than the left side, and the right is where we have our rhythm. It's where music exists and poetry and prayer.

That's a gift. My dad, even to his last days, played his guitar and loved music. He felt different way of being and expressing himself through that music. And you know, that's the thing is you gotta look through the [00:29:00] darkness and for that little light to see where you can really connect and have some beauty despite whatever this journey brings you to.

Jill: Man, I didn't know that about the right side of the brain. If I had an option, that would be the part that I would wanna keep, right? The creative parts, the part of me that likes to do art and likes to sing, even though nobody else wants to hear it. I don't wanna keep the part of me that stresses and obsesses and needs to work and needs to focus and is very analytical about everything.

If I had a choice of keeping one or the other, I'd for sure wanna keep creating art. As long as possible. I didn't actually know that. And it's interesting because I think back to my grandmother, she was born in 1916, so she would be very old right now. She did die in her nineties. I just remember when I was a kid, if she would be talking about the older people and she'd say, oh, they're senile.

They're senile. They're senile. I wonder if some of the increase in dementia diagnosis. Is just more that now we're like, well, maybe that's not [00:30:00] just senile, whatever that means. Maybe it's more that this is a thing and we can keep our bodies alive so much longer with medical technology, but that doesn't mean we could keep the brain alive and healthy.

I guess maybe it's a combination of those two things. I don't know. But I don't want it to be me if I have a choice, but I don't have a choice. 

Jen: Unfortunately, there's things you can do to set yourself up for success, taking good care of your body, being able to do brain activities, exercise, physical, actual exercise.

Eating well all can help. You know, set for success. But the truth is there's no way I can say do this and you won't get dementia. Unfortunately, that's like a roll of the dice, and it's just going to be a reality for a lot of people. It's something that we have to accept in some 

Jill: aspect, just like maybe coming to it with.

A level of [00:31:00] acceptance rather than wanting it to be different and feeling like we need to fight or change. Do they have any idea if there is a cause for dementia? Like is there any links to like, you know, certain lifestyle things or is it really that they're just kinda like, I don't know, it's just what happens?

Jen: Yeah, it kind of goes back to the different diagnosis. They feel like Alzheimer's is more of a genetic marker that you're, can be genetically predisposed, but there's also other ones that like can have stemmed from brain injuries. Actually, looking back at my dad and considering the fact that, and again, sometimes the doctors do the best of putting a word.

Diagnosis to the type of cognitive impairment, but the only way to a hundred percent know is to do an autopsy. You can't do that until after the person has passed. They do a lot of precursory symptom understanding to get to a diagnosis, but [00:32:00] it's still kind of a shot in the dark in some aspects. My dad actually had a.

Bike, like not a motorcycle bike, actual bike accident many years ago where he wound up having a concussion and. Broke some ribs. I wonder how much that triggered because even though he was diagnosed with vascular, which has to do with blood flow, heart attack and stroke, I think a lot of it may have stemmed back to that head injury.

It was just so weird that even I look back and where we actually got estranged was from a, a dynamic that we got into a really bad argument and now that I look back. I wonder if that wasn't the early signs of him being cognitively impaired, that he time traveled and thought I was his daughter, that he had to.

Correct, rather than the grown adult that I was at that time. It's just one of [00:33:00] those things where this is the downfall of where we are as a healthcare system in some aspects when it comes to cognitive impairment. We don't do enough screening and people are scared to know if there's starting to slip cognitively, but it, it can also set you up for success that you know, and you can put some fail season into place when you're early on so that you.

The ability to advocate for yourself, and I would love to start seeing memory screening being part of a yearly checkup when you go to your physician so that you, those red flags and sometimes it can be corrected very easily. A UTI. Or a change in medication or a toxicity, you know, unfortunately we're kind of the society that likes to take a pill for everything, but as we get older, our body has less ability to flush that out and it can build up and we can have some adverse effects from it.

Hmm. The thing is, is that if you can [00:34:00] correct it, it's not dementia, it's just a cognitive impairment that you can re-correct. I would love to see more people embrace that there's a screening and, and they know where they are baseline, so that those red flags get rated because that's the other side of this is my dad, like I said, Mensa certified.

He was able to cover for way too long. Monumental. There's math problems, there's geometric shapes, animals that you have to tell. Guess what? He could have probably that away. So even when he was declining, he was still higher than the average. People didn't. Realize that for him, he was showing signs way before it got to that crisis level.

There's also still the generation that opted to stay home and take care of kids and the family rather than going to formal education. Math problems may always have been a difficult for them, so they're [00:35:00] not going to score well with that, but they're still able to. Have sequence able to have reason. And that is not cognitive impairment.

That is something that is just where they are and, and it's good to know so that you can actually be aware when there are changes because that 

Jill: does almost make it seem like start doing them, nail those screenings. Right. Even like middle age, right? Again, I'm 46, like start doing the nails so that then maybe if it's every 10 years at 46, at 56, at 66, so that maybe around 66, if they're like, Ooh, like this has changed a lot.

Maybe that means we need to look into something a little bit deeper where if we wait until we start having the problems, then there's no baseline. There's no like, oh, this is what it used to be. Now it's this. Maybe that's a problem because yeah, like I'm one of those people that [00:36:00] math, I mean that always discombobulating my brain.

So you know, you put me down with like a math test and there's a good chance I'm not gonna do great on it. Right? Like just 'cause I never have. But that doesn't mean there's a problem. There's just not my strong suit. But you know, again, if over time it changes. So yeah, that's a good point of maybe we should And like, is that something that if you go to a doctor and you ask them.

Can they do it or do they need to have signs and symptoms first? How does that usually happen? 

Jen: There's so many different forms. There's mini mentals, there's slums, there's bims. There's so many different forms that most physicians are aware of it, and they absolutely can administer. I mean, you can even do a very basic one.

Ask somebody, give them 60 seconds and have them. Name as many animals as they possibly can. The answers will give you a clarity of where their mind and their ability to process is. Most people are gonna go very familiar and then maybe get one that starts a new [00:37:00] category. They mention a pig, so now they start going through farm animals and then they're like, oh, let me go through the zoo.

And you can see the train of thought when it puts red flags is when you are stuck. And you can't move from that hurdle. Most physicians should be able to, it's just, again, not kind of the prerequisite where they check your vision, they check your hearing, they check your mobility, but they forget to check the cognition just 'cause the truth.

I also think it's us as a culture. We don't want told that our brain's not working because. We're not set up for success. We have to do a better job of telling people that we're gonna be there for them no matter what that journey looks like, and that we will look out for their safety, but not take away their autonomy either.

That's the scariest part. This disease takes a lot from you. We shouldn't take anything else from them as well. 

Jill: Yeah, and I guess that's the thing too, like if a [00:38:00] doctor. Does do an assessment on somebody, but then they're kind of like, I know I can't really do anything anyway. So like what's the point in giving them this information?

Mm-hmm. And so the work that you do with families, like what does that look like? Like are you there day to day supporting people do, to give them training to help them know what to do? Like how does that work out? So what's nice 

Jen: is that it conforms to what they need. It's one-on-one consultations when it comes to, you know, understanding the journey and what mom's experiencing or dad's experience.

And really deep diving, it is education. Just to understand dimension, the different stages that come with it, and just how to better support somebody to tools and techniques. You know, positive physical approach is a way to actually. Engage with somebody in a manner that is understanding of their limitations and aware of it.

I have a client that I spend a [00:39:00] week with who is moderately progressed with dementia. I go in there and try to bring a quality of life for my hour visit with her on a one-on-one basis. We utilize a lot of aromatherapy music therapy, and it, it, it fascinates me because, you know, again, even somebody who's into a moderate stages of this, there's still this, this spirit and spunk.

I was with her this week. She was a little groggy. Her go-to is to walk, so she just wasn't into much else. I was like, you know what? I'm following your lead. We'll just walk today. When we were walking around, the one area of the community looks like a airplane and it has two seats every time we would walk by it, I would sing and I can't sing but still do it.

Leaving on a jet plane, I do things repetitiously with somebody with cognitive impairment because there is an agreement that comes with it. Funny. After our fourth or fifth lab, as I started to come around the corner, she looked at me and said, [00:40:00] here we go again. And I was like, yep. And I started singing it and we both started giggling.

And that's like, again, the things that just fascinate me and just make me feel like this is why I do what I do. But we were both enjoying. The experience, I'm there to support families in whatever they need. Sometimes it's just a place to kind of talk through and say, you know, what, am I doing everything I can?

And you know, sometimes it's the reassurance that they absolutely are. You know, I can tell somebody just, you know, message to anybody walking this path with somebody living with dementia. Throw away right and wrong, good or bad, because that doesn't exist anymore. It's about what works. And trying to change the things that aren't working to get to what works.

And that looks different day to day, sometimes hour from hour. So stop beating yourself up and just realize that you're doing the best [00:41:00] you can. And you know what? You're doing it with love, then everything is the way it's supposed to be. 

Jill: None of us are gonna be perfect at any of this. I just talked with somebody right before we got on the call and they're navigating end of life with their sibling.

They said, I can't be the superhero here. And I said, how about we reframe this as in you can be the superhero. The reality is we're all gonna die. What we can do is help provide an end of life experience that can be as smooth as possible, as in alignment with what matters to them as possible. Maybe that is being a superhero, right?

You can't save them. We're all gonna die. But what a gift it is to give somebody, especially if it's somebody that we love, somebody that we care about this. Hair and this attention and any little moments of joy by just showing up and doing the best that we can. In so many cases, it's just kind of like relaxing into [00:42:00] the situation.

And it seems like, especially with dementia, there's so much of like, I want this to change. I want it to be different. I want them to go back to the way that they used to be. I want our relationship to go back to the way that it used to be. That's not the reality, right? That's not an option. So what are our options?

Our options are to give them and ourselves the best experience. And it seems like you did that with your dad, and that makes me really happy, and that you are able to help guide families to have. A similar experience, if possible with their loved ones at the end of life. And it's beautiful. I'm so happy you're doing the work.

I'm so happy that you found the work because people need you. And that leads us right into where can people find you? Do you wanna send them to a website? And I'll put links to all of it in the show notes, but where should they reach out to you? So I do have 

Jen: a website. It's ww dot dementia family support.org, and there's ways to [00:43:00] contact through there.

Feel free. It goes right to me. My phone number's on there as well. It comes right to me. I'm here to guide you. There's always a free consultation to navigate through what kind of support you're looking at. There's no cost for that. I'm here as a resource and sometimes they voice to say, you're not alone on this journey, and we'll get you through.

Jill: And so I know you're in South Jersey still. I mean, that's where I am. But if people live outside of state, can you still support them through like resources and Zoom and all that good stuff? 

Jen: Absolutely. It's the beauty of technology, and if I can take anything positive out of the pandemic, is that we learn to embrace technology better, and that's the nice thing is dementia, family support is limitless.

I can support you and your loved ones, whether they're in California, whether they're in another country, as long as I can see. Get a translator to translate if they speak another language. I'm here to help. We do some online education. I have an [00:44:00] online support group that'll be starting in April, so there's ways to connect that.

You don't have to be local, but if you are in the tri-state area, when you want more in-person support, I can definitely, as long as I can get there with car within a reasonable amount of time, we're good. 

Jill: And I love that you're gonna do a support group. 'cause like you said, sometimes just having the community, people that understand and that are on a similar path as you are can be so helpful.

Navigating the end of life and illnesses can be so lonely. 'cause people just don't understand if people in your circle don't understand what you're going through with a loved one with dementia. I could feel very isolating and very alone sometimes just being able to get on a Zoom and be like, can you believe my dad did this crazy thing today and I didn't know what to do, but we did the best.

Having somebody be like, yeah, sure, I went through something similar, can just be enough to help us get [00:45:00] through that day. So that's beautiful. I'm really happy. 

Jen: You know it is to have somebody that understands sometimes the things that we're scared to say. One of the things at the end of this disease process, I lost my dad in January of 2024, and at the end there was no quality of life for him, and I felt.

Very isolated. 'cause there was very few people that I could make the comment that I was wishing for my dad to die. And not because I didn't love him, it was because I loved him. And I was so tired of watching him suffer. And to say those words out loud felt so. Gross and so ugly. And so I got around people that were like, yeah, I felt the same way.

There was a beauty in being able to just be like, okay, I am not the only one. I'm not this terrible daughter for feeling this way. And I have to tell you a funny story. At the end, he was really progressing. His foot actually had deteriorated to almost no bone [00:46:00] left in his actual foot. So his stability was really a compromise and.

I wound up going to to my social worker and I was like. I don't know what he's holding on for. I just feel like we're in this transition of, what does he mean? She was like, did you have to talk with him? And I was like, you know what? I haven't had the talk that it's okay to go. It just so happened that the next day I got a call from the hospice that they thought he was transitioning.

They said he was unresponsive. It was respirations were decreased. So I stopped everything I did, and I ran right to him. I crawled in bed with him and they had the music on. He loved Beatles. So the Beatles was playing. I crawl in bed and I start, daddy, you did a great job. You know, you're, you're fine to go.

You raised strong daughter. I'm, I'm gonna be okay. And I'm just so glad we had, you know, blah, blah, blah. I'm having this conversation and he opened his eyes clear as day and was like, what [00:47:00] are you talking about? I was like. Does he think I'm trying to kill him or something? I was so embarrassed. I was like, not.

And he's like, well, what are we doing? I was like, whatever you want. Let's watch a movie. And we did. We watched Super Mario Brothers movie. He was so funny because he was kind of watching it as he was fading in and out, and he was so upset that Mario was losing. And I was like, don't worry, dad. It gets better.

And that was actually the last conscious memory that I have with my dad. He passed a couple days later. And it was just one of those things where I was like that. That was the memory he had to leave me with. 

Jill: Hey, you know what, he still maybe needed to hear it even if he didn't want to. 

Jen: Absolutely. 

Jill: Well, thank you so much.

This was wonderful. You know, I love you and I'm so happy to have this conversation and for real, Jen's amazing. If you need help, reach out to her. She will for sure be there and support you. 

Jen: Thank you, Jill. Thank you for this opportunity. I love you too, and this has been a [00:48:00] blast, so thank you. 

Jill: In my next episode, Tony Stewart shares his journey through love, loss and healing.

After the death of his wife, Lynn, we talk about his new book, carrying the Tiger, living with Cancer, dying with Grace, finding Joy while grieving, where he recounts Lynn's Sudden Cancer diagnosis, their emotional time together, and the powerful lessons they learned about life and letting go. Tony reflects on their decades of art, travel, and partnership, the sacredness of Lynn's final days in hospice, and how writing updates for friends eventually grow into a deeply honest book about grief.

He also opens up about finding new love after loss. Showing that healing doesn't mean forgetting. This conversation is a heartfelt look at resilience, hope, and the surprising ways joys and sorrow can coexist. If you enjoyed this episode, please share it with a friend or family member who might find it interesting.

Your support in spreading the podcast is greatly appreciated. Please consider [00:49:00] subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show.

Your contribution will help keep the podcast advertisement free, whether your donation is large or small. Every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription as well as a link to my Venmo if you prefer to make a one-time contribution.

Thank you and I look forward to seeing you in next week's episode of Seeing Death. Clearly.