Dementia and the Long Goodbye: Care & Coping

In this riveting episode, Jennifer Awinda, shatters myths about dementia  and aging. As a senior living and dementia practitioner, she shares moving stories of her grandparent’s battles with dementia that brought her to this work. Jennifer's insights will help you clearly understand the differences between dementia and Alzheimer’s and learn essential advice for caregivers on managing the emotional rollercoaster and physical toll of caregiving.
 
 Learn essential strategies for supporting loved ones with advanced dementia, from playing music from their past, nature therapy to daily routines.
Jennifer shares wisdom from her book, "Navigating Senior Care, Dementia, and Dying," which is jam-packed with practical guidance on senior care options and financial resources. She addresses the unique challenges faced by young family members, the emotional complexities of “anticipatory grief,” and how relationships transform as dementia progresses. Tune in to discover practical tips and heartfelt advice that will help you support your loved one while also taking care of yourself.

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Chapters

• 0:07 Caring for Loved Ones With Dementia
• 16:16 Navigating Dementia Care for All
• 24:56 Understanding Dementia and Anticipatory Grief

Transcript

Pat
Fill To Capacity where heart grit and irreverent humor collide. A podcast for people too stubborn to quit and too creative not to make a difference.

Pat
Hi, I am Pat Benincasa and welcome to Fill To Capacity, Episode # 78, “Dementia And The Long Goodbye: Care and Coping.” Today we are joined by a passionate advocate in the field of senior care and dementia, Jennifer Awinda. She also is known by her pen name, Empress Ivory, and is a prolific author, illustrator, senior living executive and dementia practitioner. She's an end-of-life doula, public speaker, and the founder of Timeless Doula Services.  With an array of books, animations, and training tools to her name, her newest publication, “Navigating Senior Care, Dementia and Dying” serves as a vital handbook for the final chapters of life. 

Jen's mission is clear: To alleviate confusion and provide dignity, resources and guidance for those navigating the complexities of senior care and end of life transition. Moreover, Jen has written, engaging and insightful books about dementia for children and teens, helping young minds understand and cope with this challenging condition. Well, with all that said, welcome Jennifer So nice to have you here.

Jennifer
Thank you so much for inviting me.

Pat
So, before we jump in, I just wanna say to my listeners that Fill To Capacity  covers a wide range of topics that impacts people's lives. Dementia is one that is important to me as it affects people that I love, and I know I'm not alone. I hope you find this conversation to be useful. So, with that said, Jennifer, I'm really curious, what is your backstory? What drew you to this topic and made you so passionate and creative about it? 

Jennifer
Alright. Well, I have been a writer. Three out of four of my grandparents had different diseases that caused dementia. So, after my grandmother was diagnosed with Alzheimer's disease and my grandfather was diagnosed with Parkinson's disease, that's when I started working in senior living. And then another grandmother was diagnosed with vascular disease, which then developed into dementia. Like the other grandparents of mine, my fourth grandparent, my grandpa Bruce, he actually lived to 98 and he was clear as until the last day. But that's really what got me into working in senior living. And my passion is definitely for caring for aging people and working with people who have dementia. And since I worked with so many people who were actively dying or who have transitioned, it's important that people understand this is part of life. I mean, dementia is not normal. Aging, right. But dying is part of life. So, whether you have dementia or not, it's good to know your options, which is why I wrote that book, “Navigating Senior Care, Dementia and Dying, ”so people can know their options.

Pat 

You know, I'm glad you brought that up. I was gonna ask you about this misconception that as people age, they get what's called senile dementia, as if that's a given. And I'm so glad you're addressing that, that that is not a natural outcome of aging.

Jennifer 

It's not. Dementia typically starts with mild cognitive impairment and then leads into severe cognitive decline. But that is not normal Aging. Normal aging is living well into your seventies, eighties, nineties, even hundreds now. And still remembering and recognizing your family and your friends and remembering what you did yesterday and having, well-rounded conversations or whatever, you know, was going on. It's not normal to develop senility or cognitive impairments. Those things are not normal.

Pat
Okay.

Jennifer
Yeah. That's not normal aging.

Pat
Now, before we go any further, what is the difference between Alzheimer's and dementia?

Jennifer
So, I like to use this analogy there is cancer, right? Well, there's so many different kinds of cancer. You can have breast cancer, colon cancer, brain cancer, bone cancer, so many different kinds of cancer, right? 

Well, dementia is the same way. There are so many different things that can cause dementia. Alzheimer's disease causes dementia. Parkinson's disease can cause dementia, vascular disease, or severe enough stroke can cause dementia, being hit in the head with a baseball bat can cause dementia. Right? So dementia is the umbrella term for the symptoms of that progressive brain failure.

Jennifer 
So when it's diagnosed as dementia, it has gotten so severe that the person cannot take care of themself, cannot handle their day to day. That's when it can be diagnosed as dementia. 

But there's a lot of people with Alzheimer's disease that don't have dementia yet. There's a lot of people with vascular disease that haven't developed dementia yet. So, once it gets so bad and it's progressively getting worse, that is your dementia.

 Pat
Okay. That's a nice way of distinguishing between the two. I wanna talk about caregivers watching a loved one gradually lose their memory, personality and independence has to be just so incredibly painful. How can caregivers cope with the deep sense of grief and loss they often feel?

Jennifer 
I like to recommend people to support groups. They're very helpful. You know, especially when you're able to bounce ideas off and situations off of other people who are going through the same things that you're going through. You don't feel quite as alone. So support groups are very helpful. Making sure that you have a support system in place because, you know, a lot of people are like, oh, it's all me. I have to do everything for my mom, or whatever. Right. But we, we do have good Samaritans in this world, and we overlook that fact. Even your neighbor might be willing to once a week make a little extra food if you give her a little extra cash. You know, for one meal to help with that meal planning, because trying to do everything for your loved one, it can be draining. 

Pat 
Oh Yeah.

Jennifer 
Another thing is making sure that you have your own mental health. You can't be that up 24 hours a day person and try and take a nap when they're taking a nap because you're not really sleeping. You're, you're not eating. 

Jennifer 
You’re not doing social relationships or suffering your personal identity. Giving up yourself because you're trying to do everything for your loved one. What we tend to see is the well spouse decline even faster than the ill spouse because they're not doing that self-care. 

 Pat
Yeah.

Jennifer 
Taking time for yourself, there are assisted livings that have respite services, short term stays. If that person is already on hospice, then hospice, there's a five-day respite patient stay covered by Medicare. And, there's different options. 

Even having someone, I hate to say babysit, but watch your loved one for a couple hours. Just even go to the grocery store or having a private caregiving company send a caregiver just for a couple of hours. So, you can do some of those things that you need to do, but having a support system is extremely helpful. Going to those support groups is very helpful.

Pat
I'd like to ask, there's a point, as a caregiver, you're managing, trying to manage the behavioral and psychological symptoms of dementia, like agitation, aggression, wandering. Is there a point when you're caring for a loved one that it becomes too much? That if this person requires 24 7, you know, you have to watch 'em so they don't leave the house or wander off or is getting very aggressive. How do people know that point? Because I, I imagine people wanna say, no, no, I can handle this. At what point do they stop and say, I can't do this anymore?

Jennifer 
So everyone's breaking point is different. It's relative. Some people, they're able to keep their loved one at home the entire time through the end of life. But when there is wandering, it makes it challenging. When there's those aggressive behaviors, sometimes you need professional help. And what we see a lot again, is that well spouse waiting until the last moment to place their loved one. And they're so worn out. Sometimes we end up visiting the well spouse in the hospital and they're freaking out in the hospital who's taking care of my husband because they're in the hospital now. 

Jennifer 
Not where's he wandered off to. Right?  So, you need a support group. It's very important, but you also need to be realistic and let go of that idea. And I hate to say this, I'm not trying to sell a community or anything like that, but let go of the idea of the mid 19 hundreds when we could have four and five generations living at home.  It's just not our reality anymore. 

If you're still working and trying to have your own life, it's gonna be really hard to care for that 90-year-old person that's now being violently combative with you.  And sometimes you do need professional help. You do need hospice to get involved. Sometimes some people qualify for hospice, they have end of life dementia. But ones are in denial. Oh, no, no. They're not dying yet. Well, if they've had dementia for so many years, then yes, they're on their way out. And sometimes people do not reach out for help from hospice or from other organizations until the last minute. To me, that's the average been on hospice. 

Pat 
I wanna ask you, do you think there's an element of feeling like you are betraying your loved one if you place them in a hospice situation?

Jennifer 
Yeah. In the hospice and in the senior living scenario. People say that'll I'll never move you into a nursing home. Well, assisted living is not a nursing home. Nursing homes have 24-hour nursing services, assisted living do not. 

Memory care communities don't have 24 hour medical. It's supposed to be non-medical. They can help with bathing and things. But just because you're getting a hospice evaluation doesn't mean someone's gonna die right now.  It only means that now they're gonna have CNAs and nurses coming to the home more often or coming to the facility more often just to give that extra attention to the loved one. 

I've had so many people go on hospice and then get voted off of hospice. They no longer qualified because they were doing so much better. They were eating better. They had comfort meds in place. 

Jennifer 
They felt better every day letting go of that guilt. This is human. We're all human. 

Pat 
Yeah.

Jennifer 
But you know, you know, all of us have a time expiration stamp eventually, right?

Pat
Yes, we do. But you bring up a good point because I think there are many folks out there who are listening, who are juggling multiple roles. They're parenting their own kids, they're trying to take care of aging parents. They're working and this constant juggling.

Jennifer 
And of course, they're calling it the sandwich generation, right? 

Jennifer 
Your health, you're raising your kids and your grandkids and taking care of your ailing parents. And you're just squeezed in because you're still working full time, you're still trying to manage your own personal relationships and some kind of serenity in your own life.  

So when you have that many responsibilities and then your car needs maintenance now and oh, the ceiling upstairs or whatever. Right. It's important that people realize we're human, we all have limitations. 

And that's why there are so many senior living communities out there who can help, or uh, those in-home caregiving companies and just different resources. Your area agency on aging and your different Alzheimer's associations and things like that, that can really help and give guidance. But to feel guilty for not being Wonder Woman or Superman, we're all human.

Pat
Yes we are. You know, I wanna talk a moment about “emotional whiplash.” One minute the loved one is lucid, knows who you are, and then in a split second they're confused or unresponsive. It's like you lose them all over again and again and again. How do you deal with this emotional rollercoaster?

Jennifer 
Moment to moment. And when you think of it, it's hard to not use the development of an infant. They can't tell you what they want, so they cry. Right? They need things and they have to have outbursts for you to recognize I need something. And that's kind of what's going on with that dementia piece. Once they can no longer communicate their needs, there are behaviors, there are ways that they express themselves which are very challenging for us to investigate, figure out what's going on everyday moment to moment, to trying to make that person happy in this moment. Because they're not gonna remember 10 minutes ago anyway. Right. So, it's every moment making it as positive as possible, as calm and serene as possible.

Pat 
Okay.

Jennifer 
Anyone who's any child that is bored is gonna find something to get into. So same thing with an adult. You know, if they have advanced dementia and they reverted to childhood, they need something to do. So we all lived our lives, had lots of stuff to do. So, to just stop because now you have dementia, need some room for potential problems.

Pat
You know, I read somewhere that with someone who has dementia, if you bring in like a box of rocks, leaves, barnwood photographs or play music, that sometimes the tactile handling of let's say autumn leaves, give them comfort or allow them to reminisce or looking at all photos or playing music from their time growing up seems to connect them to a moment.

Jennifer 
Most definitely. And when you think of the music piece that is so important, the other tactile things that you were referring to sound more like those organic materials, the leaves. And now in the right temporal lobe, your rhythm is retained, your love for nature is retained. So those kinds of things go together right there in the right temporal lobe. Even if you haven't spoken in months, start singing Jingle Bells and that person with dementia might remember every single word and sing along. 

Even if they put a song on that you haven't heard since you were 12 years old, you haven't heard it on the radio since you were a kid. They put it on, you remember every single word sing along with it. Harmony is extremely important. It helps us to keep positive moments flowing. So yes, get that playlist ready.

Jennifer 
Some of those songs from back in the days ...help going outside, seeing the birds, feeling some nature. Those are always gonna help. And you know, when you think about nature, a lot of people have problems with sleeping and it's because their circadian rhythms are thrown off. Outside you get that natural vitamin D and that natural sunlight... And so it's important that we do have that connection with outside, with nature and not just be in the room, is important. The spiritual beliefs are important. Those things are retained.

Pat
I wanna ask a question that folks might be reluctant to ask. Caregiving can bring out a full range of emotions. You know, caregivers feel so deeply committed and they wanna help, but they also can experience frustration, feeling overwhelmed, isolated, angry, bitter, or even ambivalent at times. Can you talk about the state of mind of caregivers as they navigate these complex emotions? I mean, first of all, is it okay to feel all these things?

Jennifer 
Whatever you're feeling is normal, is natural. I mean, whatever you are feeling. The same thing with a person, how they grieve before the person dies. All of these are natural feelings. And it's important that you do have a support system up. Because if you're just dealing with it all yourself and you think all the weight is all along your shoulders, that's gonna cause some mental distress. And which will lead to physical ailments. Right? I mean, shown stress leads to disease. So, the state of mind, it also depends on how much sleep you've gotten, how much support you have. If that person is going adult daycare every day, or if they're with you 24 7. 

Pat
Right.

Jennifer 
That it just depends on each person and what they're dealing with.

Pat 
And that brings me to your book, “Navigating Senior Care: Dementia and Dying.” You know, it's a comprehensive guide. Can you just give us maybe a takeaway or two that you hope readers will gain from it?

Jennifer 
Most definitely. There's so many takeaways though, really. It's three parts to the book. It's all about the senior care piece for options, what you need to be looking at, planning for things like that. It's a lot of people dunno, there's private long-term care insurance that can cover the cost of senior living. There's VAA, there's all these possible monies out there that might help to pay for care, whether it's home or in a community. 

The main takeaways though is you will have answers to hundreds of questions in this book. So your takeaway is gonna be those answers and therefore you can make better decisions. Because I mean, I put so much in this book, it's years of compiling information, experience and all the ins and outs of senior care. And not only that, then the second part is dementia, this is what dementia is and isn't, and how to work with people who have dementia because this is a relatively new term. Ronald Reagan, that really made it a big thing.  But he had Alzheimer's specifically, and you've got other types of dementia out there. Alzheimer's is not the only one that causes dementia. We see Bruce Willis and Wendy Williams being diagnosed and they're in their sixties. 

Jennifer 
People going into communities that are in their forties and fifties. So it's important that this isn't a Baby Boomer thing or a GI generation thing. This is Gen X as well. And even Gen Z.  Now you got Gen Zs being diagnosed with cancer and different diseases that may lead to dementia in your very young age. So, the takeaway is that all of us are an illness or injury away from need. That book and the answers in that book, you don't have to be afraid if you have the tools and the pre-planning in place, if you know what questions to ask, you don't have to be afraid.

Pat 
Oh, that's wonderful. Now, when I was reading about you, I was so thrilled to see this. You've written books about dementia for children and teens. And I think that when people discuss dementia, they're so focused on the loved one that they don't think maybe about grandchildren or children or all the people that that person affects. And here you went and you are writing this for children and teenagers, this thing called dementia. So what unique challenges do young people face when a family member's diagnosed with dementia? And how can these books help them?

Jennifer 
The challenges are that their parents often don't really understand it and they're looking for answers from their parents because parents are the ones that teach us as children.  So when your parent doesn't know about why their mother or grandparent is going, what they're really going through and how we can help to some degree, it's important that the little kids, since they're impressionable, that they understand. I started writing books when I was nine years old. I remember how overzealous, I was about writing. I just loved it. So I realized a lot of my friends, they around that same age, 10, it was this pre-teen, they were like, I know what I wanna do when I grow up. We're all looking for what we love and they're impressionable. They're also gonna be the caregivers. And they're also gonna be caring for their parents, who unfortunately since dementia is about to increase by 200% - dementia is about increase.

Jennifer
So significantly they're gonna be the neuroscientists and the neurologists and they're gonna be the ones that are potentially finding the cure. And so if we can get the young children engaged and understanding at least the basics of dementia right now, not only are they gonna be able to have some type of an intergenerational activity with their loved one when they visit, versus just sitting on a cell phone looking over here while grandma's way over here. Potentially bring them them together and hopefully get not just more caregivers, but more fresh new minds coming up with ideas on how to alleviate some of this pressure.

Pat 
I wanna go in a different direction. You have aging parents and how do you know they have signs of dementia? You know, like what is a normal like, oh, I forgot my keys. Oh, they're in my coat pocket to dementia. Where it is significant. What are the signs that they have to see to begin to suspect? Maybe they have dementia?

Jennifer
So this is gonna be different for everyone. Definitely. It depends on the condition that caused it. Because again, if someone has Parkinson's disease, they may live with it for 20, 30, 40 years and develop dementia at the very end. I think around 70% of Parkinson's cases develop dementia. Not all of them do. And it's not a memory loss thing for the Parkinson's, like it is for the Alzheimer's. It's easier to see that Alzheimer's one because you're like, okay, mom is repeating herself and she's forgetting things. But with the Parkinson's, that's a whole different, that's your shuffling, there's a a difference. Same thing with the severe stroke. I mean, someone can have a severe stroke at a moment's notice and then develop dementia and have not just the drooping and the slurred speech, but actually not be able to handle themselves. Their cognition is totally gone so badly that it's diagnosed as dementia.

Jennifer 
So it really depends on the person when it's a gradual progression, again, that Alzheimer's, you see the memory loss and the forgetting things that, you know, the repeating themselves and not being able to have a train of thought and an actual <inaudible> that makes sense. Follow along with everyday life with that. 

Potentially another type, let's say Huntington's disease, that is also like that Parkinson's loss of motor control. Where your frontal temporal disease, you're gonna see not necessarily as much memory loss as you're gonna see behaviors, you know, the angry outbursts and screaming and potentially lashing out and punching. So it just depends on who and what condition caused it. But definitely that cognitive decline is extremely important to watch out for. If you see someone is repeating themselves a lot, you told them three times already and they still are not grasping it, they need to have some tests run.

Jennifer 
But this is another thing. If someone has dehydration severe enough, it can cause delirium. And here you think this person has dementia, but it's actually an infection that can be treated because of a UTI or something else. So those mimic dementia symptoms have behaviors and things that just the disorientation with a severe infection. So that is' dementia though. That is delirium that can be treated. But of course some people with dementia also develop delirium. So yeah. If you notice there's a decline in cognition, you need to see a doctor have tests run and have them potentially diagnose the problem. 

Pat 
What I so appreciate about your approach is that the nuances that everybody is different. It could be a medical condition, it could be dehydration, all these components. So you don't have to jump the gun saying, uh oh dementia, but maybe I wanna take my parent to a doctor and just get a checkup and see what's going on. Because it you, you're really presenting a strong case. It could be a variety of things.

Jennifer
Yep.

Pat 
You know, as we were talking about support, I came across the Alzheimer's Association. They have a 24- 7 helpline, and the number is 1- 802- 272-3900. And they also have on their site a link to community support in your area. And I'll put this in the show notes, but folks need to really know that there's a place to go to and reach out for help. And you've really stressed that.

Jen, Alzheimer is referred to as “the long goodbye.” And it's that prolonged period of gradual decline that can go on for many years from diagnosis to death. Now during this time, caregivers and family members witnessed the slow loss of memory, cognitive abilities and personality traits of their loved ones. This gradual deterioration often leads to a sense of “anticipatory grief,” where a loved one feels the loss of the person they once knew well before their physical death. Will you talk about “anticipatory grief?”

Jennifer 
Yeah. This is really challenging. Say you got married to a person and they develop a disease that causes dementia, they become an entirely different person than the one you married. And yes, in life we all change. That is true. Everyone changes over the years and decades. But the dementia part of it, that's a different type of change. That can make a sweet little old person turn into a mean, angry, physically aggressive person, or vice versa. Someone that you were married to or your parent that was so mean all your life and now they're just as pie. And it sure is hard to be mad at about.  But you have all these decades of history and family dynamics that me as a professional in working in memory care communities, I don't know that family. Right. All I know is what I see now, and I can only coach for what I see now and try and help people through this particular part of their goodbye.

Jennifer 
But yeah, that person  you've married 'em and now they're completely different. It's heart-wrenching to see so many families going through this. But we do to some degree have to disconnect ourselves in order to maintain our own normality, our everyday life. Because you can't just grieve every single day and break down crying every single day because your loved one doesn't remember who you're now, you know themselves. Now the caregiver has to feed them now they're incontinent. All these different things that come with that dementia piece. You still need to have your own life. And yes, you come visit, of course, you know, you need to be you, you need to still be there even though they have become someone else and maybe don't even acknowledge you're there. Maybe they're just totally staring into space. In and all of that stuff. But your presence is still very important there. They'll know your touch, they'll know your voice, even if you think that they're not paying attention and they can't hear. And the same thing with that dying piece. You know, a lot of people are, when they're actively dying, sometimes it takes weeks. Yeah, okay. They're, they're in that bed and they're emaciated and they're just drifting a little further, a little further. But you just being there to say goodbye, whether it takes weeks or whether it takes years, being there is very important. You know, I would want my family there.

Pat
Yeah, of course.

Jennifer 
It's rough though. And again, those support groups are gonna be helpful learning as much as you possibly can about dementia, which is why I wrote that book, and which is why the dementia piece in that book is so heavy, has so much information because to understand when you see someone doing something weird, oh, I know what's going on. I know what that kind of means to some degree, seeing some of the behaviors, okay, I know I can't argue back because they won't understand my logic because that frontal lobe is being destroyed. You know, just yeah. Understanding where the brain failure is occurring and it's simultaneously happening in all parts of the brain to a little bit of comfort in seeing, okay, this person is gradually disappearing.

Pat
I think some of the aspects of what you're talking about is suggesting that the caregivers stay in present moment. And the other piece is you're saying if you know what's coming down the pike, if they're acting a certain way and you go, oh, that's that frontal lobe thing, you still feel frustrated. But knowing seems to help that oh, this is what they're going through. Okay. I get it. Frustrating as hell. Yes. But at least you know what it is.

Jennifer
Yeah. It helps you have a bit more compassion when you understand that dementia piece. It makes it a lot easier to tolerate.

Pat 
You know, as a dementia practitioner, what advice do you have for families who are just starting to navigate the complexities of dementia care for their loved ones? They're just starting it. 

Jennifer
I would definitely say, and I'm not just saying this because I wrote the book, but you need that book. People need to read this book. It has so many answers, not only about the senior care and your options and how to pay for it and what to expect and what dementia looks like, and how to help people with dementia. But even when it comes to that, the final transitions and what to be looking for and how to interact with people with a hundred different things you can do with people who have cognitive impairments and the travel piece even, you know, trying to get on an airplane with someone who has dementia, to a long car ride and go from one state to the next. And there's a lot involved. So book is gonna be ... I call it the handbook for the final chapters of life.

Pat
Yeah, Also, the books that you've written for children and teens, if someone wants to get your books, should they go to your website so they can look at the books for children and teens as well as this handbook?

Jennifer 
Yes, you can definitely go on my website, jenniferawinda.com. Jennifer, with two Ns. And is spelled A-W-I-N-D-A, so jenniferawinda.com. I'm constantly writing and putting more information on my website. So yes, I have the books about dementia for the little kids, for the teenagers, just to get straight to the point for these teens. And then, of course, more extensive information for adults.

Pat
I will definitely put your website in the show notes so folks can reach you. Well, this has been quite a conversation, Jennifer. I, I wanna thank you for sharing your important and creative work with us today. It was really wonderful. Thank you so much.

Jennifer
Thank you for having me today.

Pat
Hey listeners, thanks for joining us today and take care. Bye.