Bite Your Tongue: The Podcast
Nov. 29, 2024

Preparing for the Future: Conversations About Alzheimer's and Caregiving

Preparing for the Future: Conversations About Alzheimer's and Caregiving
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Today we discuss the circle of life and explore the emotional and delicate balance of caregiving.  For most of us we will be caregivers to our spouse, parents or even our children. And at some point, our own children will be our caregivers. 

We are lucky to have two guests.  The first is Dana Eble, who has  been involved in Alzheimer’s disease philanthropy for more than a decade, which led her to being one of the first employees at Alzheimer’s Caregivers Network in 2021. Dana works to educate and equip caregivers with the knowledge and resources they need to excel in their roles while avoiding burnout.

Joining Dana is Jessica Smith. Dana shares her own story of her mother being diagnosed with Alzheimer’s disease the age of 61.  She remembers wanting to hide. She felt shame and fear as her family’s world and daily realities changed.

Jessica and Dana share their invaluable insights on the emotional and practical challenges of caregiving in the face of dementia. You'll discover how mindfulness became Jessica's anchor in managing her responsibilities and learn about the essential resource, "Navigating Alzheimer's Disease: A Map for Caregivers," available as a free PDF for anyone on a similar path.

We dive into the tough conversations that many of us avoid, yet are necessary when dealing with dementia—like preparing for end-of-life discussions and challenging the often grim societal perceptions around the disease. By fostering empathy and understanding, this episode encourages open dialogues about illness, death, and future planning, which can reduce stress and promote acceptance. The metaphor of "putting on your own air mask first" is a reminder that self-care is not a luxury but a necessity for caregivers, who must balance their own needs with thos

Modem Futura
Modem Futura is your guide to the bold frontiers of tomorrow, where technology,...

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Chapters

00:03 - Caregiving and Dementia

09:50 - Preparing for End-of-Life Conversations

14:47 - Navigating Self-Care in Caregiving

23:18 - Establishing Boundaries and Seeking Support

27:01 - [Ad] Modem Futura

27:46 - (Cont.) Establishing Boundaries and Seeking Support

30:33 - Navigating Relationships and Loss in Caregiving

44:08 - Embracing Caregiving and Wellness

Transcript
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00:00:03.287 --> 00:00:05.052
And that is a huge thing about dementia.

00:00:05.052 --> 00:00:08.070
So many people ask me does your mother know who you are?

00:00:08.070 --> 00:00:09.852
Well, I could care less.

00:00:09.852 --> 00:00:21.033
Quite frankly, I really don't care, because if I'm going to hang up my own happiness on my mother knowing my name throughout this journey, I am setting myself up for disappointment.

00:00:21.033 --> 00:00:30.231
So why do I care if she says the letters that make up the name Jessica, when all I want is to know my mom feels happy and loved and supported?

00:00:30.231 --> 00:00:32.988
Jessica is just one of the many roles I play.

00:00:38.460 --> 00:00:39.162
Hello everyone.

00:00:39.162 --> 00:00:41.368
Welcome to Bite your Tongue the podcast.

00:00:41.368 --> 00:00:42.941
I'm Denise and.

00:00:43.000 --> 00:00:50.250
I'm Kirsten, and we hope you will join us as we explore the ins and outs of building healthy relationships with our adult children.

00:00:50.631 --> 00:00:51.033
Together.

00:00:51.033 --> 00:00:57.801
We'll speak with experts, share heartfelt stories and get timely advice addressing topics that matter most to you.

00:00:58.264 --> 00:01:06.210
Get ready to dive deep and learn to build and nurture deep connections with our adult children and, of course, when to bite our tongues.

00:01:06.210 --> 00:01:07.725
So let's get started.

00:01:09.760 --> 00:01:13.572
Hello everyone and welcome to another episode of Bite your Tongue, the podcast.

00:01:13.572 --> 00:01:16.709
I'm Denise and I'm here with my co-host, kirsten.

00:01:16.709 --> 00:01:23.344
Today's episode is a very special one and it's hard to believe it's our second episode of season four.

00:01:23.344 --> 00:01:26.028
The episode is about caregiving.

00:01:26.028 --> 00:01:39.091
We've wanted to do an episode on caregiving because so many parents of young adults are caught in the middle of building relationships with their adult children and even grandchildren, and still caregiving for their own parents.

00:01:39.091 --> 00:01:48.391
Also, for all of us at this age, it's time to start thinking about our own long-term care and talking about this to our adult children.

00:01:48.391 --> 00:01:54.733
So we're thrilled to welcome two guests today Jessica Smith and Dana Ebel.

00:01:55.659 --> 00:02:02.534
Jessica's mother was diagnosed with Alzheimer's disease in 2014 at the early age of 61.

00:02:02.534 --> 00:02:05.765
Jessica remembers wanting to hide.

00:02:05.765 --> 00:02:21.067
She felt shame and fear as her family's world and daily realities changed immediately Joining Jessica is Dana, who was one of the first employees at the Alzheimer's Caregivers Network in 2021.

00:02:21.067 --> 00:02:26.936
Finally, we're going to talk about a new book put out by the Alzheimer's Caregivers Network.

00:02:26.936 --> 00:02:33.854
It's called Navigating Alzheimer's Disease a Map for Caregivers and for those listening.

00:02:33.854 --> 00:02:48.347
If you'll send us an email to biteyourtonguepodcast at gmailcom and give us an idea for an episode or give us a review, you'll have a chance to win a hard copy of the book, so don't forget to email us.

00:02:49.110 --> 00:02:49.793
I love this book.

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Denise, I think I called you right away after I read it.

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I'm exactly in this spot right now where I am caring for my elderly parents and I have adult children who are still navigating where they're going to land.

00:03:02.175 --> 00:03:07.931
So the resources in this book I was taking like rapid notes as I was going through it.

00:03:07.931 --> 00:03:16.152
I've shared a lot of it already with friends because so many of us are in this position, so we are really anxious to get started with this episode.

00:03:16.152 --> 00:03:20.134
Welcome, jessica and Dana, so happy to have you with us today.

00:03:20.134 --> 00:03:24.024
Is there anything that we missed that you would like to share with our audience?

00:03:25.086 --> 00:03:29.633
The book is available as a free PDF on our website at alzheimerscaregiversorg.

00:03:29.633 --> 00:03:37.546
So if you want a physical copy, you can win one by writing in, or you can just download a free version as a PDF.

00:03:38.068 --> 00:03:43.252
Well, great, anything you want to add, jessica, before I ask you a question, oh, no, go for it.

00:03:50.560 --> 00:03:54.757
I mean, the only thing I guess I could add is that a huge part of my journey so far with my mom that has gave me help throughout it would be my mindfulness practice which I want to touch on today.

00:03:54.776 --> 00:03:55.117
Okay, that's great.

00:03:55.117 --> 00:03:57.163
Jessica, I feel bad asking this Is your mom still alive?

00:03:57.163 --> 00:03:58.026
She is.

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Yeah, don't feel bad, let's celebrate that.

00:04:00.032 --> 00:04:00.312
Yeah.

00:04:06.099 --> 00:04:06.641
No, that's a great question.

00:04:06.641 --> 00:04:06.861
I love it.

00:04:06.861 --> 00:04:07.143
I love it.

00:04:07.143 --> 00:04:07.585
My mom is still alive.

00:04:07.585 --> 00:04:11.737
Just to paint a quick picture, I actually am a long distance caregiver for my mother, very involved.

00:04:11.737 --> 00:04:15.527
Just because we're long distance doesn't mean it's not on my mind 24-7.

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She is actually in Florida and I reside in North Carolina, so I spend a lot of time down there.

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She spends a lot of time here.

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There's a lot of back and forth and a ton of video calls, oh, I bet.

00:04:26.543 --> 00:04:31.141
So one thing that I want to understand is what's the difference between Alzheimer's and dementia?

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We hear this all the time.

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Now I'm 67.

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I'm sure I've got a little dementia.

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I'm, I've, or, or you know this thing they call senior.

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What's it called?

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I had a senior moment.

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You can't remember someone's name, you can't remember an address.

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Oh my gosh, I've known my phone number my whole life and now I can't remember it.

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I don't think I have Alzheimer's, but what's the difference between Alzheimer's and dementia or senior moments?

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Yeah, so Alzheimer's is a form of dementia.

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So if you have Alzheimer's disease, you have dementia.

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But if you have dementia you don't necessarily have Alzheimer's disease.

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There's a lot of different forms of dementia out there.

00:05:04.269 --> 00:05:06.331
How do they diagnose it?

00:05:06.331 --> 00:05:09.737
It can be kind of complicated to get a diagnosis.

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It can take a really long time.

00:05:11.202 --> 00:05:14.012
Jess, is that something you want to go into with your mom's diagnosis?

00:05:14.680 --> 00:05:14.920
Sure.

00:05:14.920 --> 00:05:16.084
So for my mom.

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She just did a simple test at the neurologist that it was just some questions that were asked.

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She had to draw a clock.

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It's a very standard type test.

00:05:23.867 --> 00:05:33.547
But something I do want to touch upon before we go on is Denise you kind of referred to it as you know you potentially having dementia or a mild case of dementia.

00:05:33.547 --> 00:05:53.805
So I just want to squash a myth that dementia is not a normal part of aging, and this is something that needs to be really hammered home, not just for those of us outside of the healthcare profession, but there are a lot of providers within the healthcare system who also assume that this is a normal part of aging, and it truly is not.

00:05:53.805 --> 00:05:58.752
Our brain is meant to age healthfully, as into our elder years.

00:05:58.752 --> 00:06:02.853
So something like maybe having a little forgetfulness here and there, that is a normal part of aging.

00:06:02.853 --> 00:06:04.879
I mean, just like how you can't run a marathon the way you once did, that is a normal part of aging.

00:06:04.879 --> 00:06:09.961
I mean, just like how you can't run a marathon the way you once did, right, because your muscles are just not the same.

00:06:09.961 --> 00:06:12.108
It's the exact same thing with your brain, I think.

00:06:12.189 --> 00:06:13.190
I just want to point out.

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Let's not take it easy on how we use that word.

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Not that we're doing something wrong by saying it, but by just recognizing that there is dementia and then there's just normal brain aging.

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You know you're going to forget something here and here and again.

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You're going to walk into a room every once in a while and forget why you walked into that room.

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There's also much, much research coming out now about the female body and menopause and how that affects the brain as well.

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Those hormone drops are different, so let's just all know that just because we're gonna go into our 70s, 80s, 90s, doesn't mean you're gonna get dementia.

00:06:51.541 --> 00:06:57.206
I wanna get more into what we're gonna talk about today with our adult children and how to prepare them and also the sandwich generation.

00:06:57.206 --> 00:06:59.279
But when do you start getting concerned?

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When other people tell you when do you know whether someone should go get checked or not get checked?

00:07:04.504 --> 00:07:08.728
Or I said to someone three weeks after Thanksgiving where did you have Thanksgiving?

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I don't know where we had Thanksgiving.

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That really concerned me.

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Yeah, I think it really.

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Just like every individual is unique, everyone living with a brain is unique, and how that brain ages is unique, right, so our approach also needs to be very unique to people we may be close to in life and maybe have a concern with.

00:07:30.050 --> 00:07:37.180
For my mom and I'll speak to that there were pretty significant changes not having to do with memory loss, believe it or not.

00:07:37.180 --> 00:07:45.084
It was more personality type changes where we were noticing a lack of organizational skills.

00:07:45.084 --> 00:07:49.105
We were noticing where there was very strong organizational skills.

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My mother Patty she is she had her linen closet.

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She had it organized by holiday, you know, and she would use some towels and then the next holiday would be on top.

00:07:58.980 --> 00:08:03.829
I mean, when I saw that closet start to go awry, that's when I knew something was up.

00:08:03.829 --> 00:08:05.192
Interesting.

00:08:05.653 --> 00:08:06.295
Yeah, yeah.

00:08:06.295 --> 00:08:13.574
So there are a lot of symptoms that may you know, may show that aren't necessarily memory loss.

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And I think, in terms of an approach and like how do you know, I think it's really up to you as a friend or you as a family member to say I'm noticing something here, can we talk about it and really opening that door to having a two-way conversation.

00:08:29.725 --> 00:08:36.048
But I think, with a lot of people and my mom, it was very difficult for my mom to hear those concerns.

00:08:36.269 --> 00:08:37.130
That's what I was going to ask you.

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Share your journey a little bit.

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Go ahead, Jessica, and tell us how you approach this and how you've dealt with it.

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Sure, I would say the beginning was probably one of the most difficult parts of this journey in terms of getting my mom on board with going to a neurologist.

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Just that very first step was very difficult for my very independent and sassy mom.

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I mean, she just did not want to do that.

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To my mom's credit, she had a great way of hiding some of these symptoms.

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You know she played them off very well and you know I have learned years later that there is actually a symptom of dementia that does not allow the person to have that same level of self-awareness that they once did.

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So there could be my mom actually with a healthy brain refuting our claims that something's going on.

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But there can also be this symptom.

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Dana, what's it called?

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Agnosia?

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Is that what it's called?

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That's ringing a bell.

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Yeah, I believe it's agnosia.

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Anyway, that permits my mother from even or someone living with dementia from knowing that something is even going on you know that the forgetfulness, is even there so quickly.

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We had a few family interventions with my mom, the entire family, my stepdad and my dad included my sisters, and it took probably three to four of those many, many phone calls for her to finally go to the neurologist and get a diagnosis.

00:10:02.029 --> 00:10:02.751
And did someone go?

00:10:02.812 --> 00:10:03.662
with her, I assume.

00:10:03.662 --> 00:10:10.672
Yeah, my stepdad went with her and as soon as they got out of that appointment, my mom told my stepdad don't you dare tell anyone.

00:10:10.672 --> 00:10:28.974
You know, I do a lot of putting myself in my mom's shoes through this journey and I encourage anyone who knows someone that's living with dementia to do the same thing, because we, the people with the healthy brains, we always think we know what's best, but, like, let's take a moment and just reflect on what this experience must be like for them.

00:10:28.974 --> 00:10:50.070
I can understand my mom's hesitation, even if she was aware, to buy into this, because for a lot of people they immediately think well, dementia diagnosis means the end, right, because as society we have this huge tragedy narrative that it's all doom and gloom once you get a dementia diagnosis, which could not be further from the truth.

00:10:50.110 --> 00:10:54.086
But we can talk about that later, your mom was relatively young and so I can imagine.

00:10:54.106 --> 00:10:59.563
I can imagine why she wouldn't want to initially.

00:10:59.583 --> 00:11:07.105
You know, it's like she has to take her own breath first to be able to sort of wrap her brain around, so to speak.

00:11:07.105 --> 00:11:10.572
What was next before she'd be comfortable talking to all of you?

00:11:11.374 --> 00:11:11.995
Absolutely.

00:11:11.995 --> 00:11:20.553
I'm older than your mother was and I think if it happened to me now, I would suddenly feel dumb, scared to say anything, scared to go anywhere.

00:11:20.553 --> 00:11:23.763
I mean, how do you get past that by?

00:11:23.802 --> 00:11:31.610
conversations like these, by talking, by having this conversation on more podcasts, by chatting with our friends and family.

00:11:31.610 --> 00:11:34.206
What would it be like if I got this certain diagnosis?

00:11:34.206 --> 00:11:44.312
I think as a society and this is where some of my initial shame came in as a society, we don't talk enough about things like disease, illness, dying.

00:11:44.312 --> 00:11:51.633
Society, we don't talk enough about things like disease, illness, dying, so that when that time actually comes, these big life moments actually come to us, we don't want to talk, we shrink.

00:11:51.633 --> 00:11:53.042
You know why we shrink?

00:11:53.042 --> 00:11:56.308
Because it's brand new, it's a new topic to us.

00:11:56.308 --> 00:12:14.200
So I feel like if we had been in a position as a family, where my mom was more open and talking about things like this, like what will happen when she gets older, no matter what the disease is or not, you know, I think she would have been a little bit more open to having those conversations at the time of diagnosis.

00:12:14.200 --> 00:12:17.769
Because I'm that way If something were to happen to me.

00:12:17.828 --> 00:12:19.152
I'll talk to anybody about it.

00:12:19.240 --> 00:12:20.982
You know I would talk to my family.

00:12:20.982 --> 00:12:32.962
I talked to my kids a lot about death and dying and they always say every time they live out of state, when they get together, the first thing I say is now, mom, why, every time we get together, the first thing you want to talk about because I want to get it out of the way.

00:12:32.962 --> 00:12:42.634
Now, this is going to be the next conversation I'm going to have with them, because I've more talked about where all my things are, what I want, how to access this, who to contact about this.

00:12:42.634 --> 00:12:44.999
So how do I approach something like this?

00:12:44.999 --> 00:12:46.822
Because everyone wants to ignore.

00:12:46.822 --> 00:12:48.125
Oh, mom, it's not going to happen.

00:12:49.168 --> 00:13:00.293
Something in my family that I'm like, eternally grateful for is my grandparents were so prepared and they had everything all their wishes, all their paperwork, everything in a massive binder.

00:13:00.293 --> 00:13:08.865
So it was all written down, and they had multiple conversations with their children and with the grandchildren about their wishes and their plans.

00:13:08.865 --> 00:13:16.392
But having a solid thing to reference and flip through it just made everybody's lives so much easier.

00:13:16.392 --> 00:13:19.173
And it's also it's not a one time conversation.

00:13:19.173 --> 00:13:26.864
It's going to be many conversations that evolve over a lot of time conversations that evolve over a lot of time.

00:13:26.884 --> 00:13:28.249
So how do we approach the whole idea of Alzheimer's or dementia?

00:13:28.249 --> 00:13:28.591
So what do I say?

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What do I do?

00:13:28.892 --> 00:13:30.357
I guess start with that one question.

00:13:30.357 --> 00:13:36.158
You wrote this question, Kirsten, about caregiving and that we feel responsible for our parents.

00:13:36.158 --> 00:13:40.144
Are there ways to prepare for this that make their obligations less stressful?

00:13:40.885 --> 00:13:51.309
I mean, I think so much about this just relies on us having this open dialogue, and that takes work internally.

00:13:51.309 --> 00:14:00.551
You know, I think I know this might sound a little woo woo, but the best place to start all of these things is with yourself and in your own mind.

00:14:00.551 --> 00:14:08.280
There's so much going on in our minds, 24, every waking hour, this nonstop chatter that we all have.

00:14:08.280 --> 00:14:13.052
It's the critic, it's the judge, it's our favorite cheerleader, all of these things.

00:14:13.052 --> 00:14:16.248
But this is always peppering every single experience that we have.

00:14:16.248 --> 00:14:33.652
So I think a place to start is internally, and what that means is to reflect on our own eventual death, which will literally happen to every single one of us, but to frame it in a way like of more of excitement rather than doom.

00:14:34.133 --> 00:14:47.427
We are all born and we all die, but when in that birth we really have little involvement over how things go, who's in the room, what music mom has playing during that time, all of those things and we arrive with our death.

00:14:47.427 --> 00:15:05.153
It is this sacred time of our lives that we actually get a say over, that we actually can plan, and I think getting comfortable with that starts by getting to know yourself a little bit better, getting to know that nonstop chatter in your mind.

00:15:05.153 --> 00:15:06.807
And what is it saying about everything?

00:15:06.807 --> 00:15:08.306
What is it saying about things?

00:15:08.306 --> 00:15:35.250
Because once we start to ponder our own death and our own end of life, we start living in a whole different way, because we realize we have a finite amount of times with our family, we have a finite amount of showers, we have a finite amount of Mondays, believe it or not, and one day, on our deathbed, when you know, 20 years earlier, we may say, oh Monday, we may be thinking I wish I had another Monday.

00:15:35.250 --> 00:15:41.225
So these things happen, starting with our mind and within ourselves.

00:15:41.285 --> 00:16:00.796
So I think a great place to start is just to each of for each Well, I think that that same idea you know, that's basically taking care of myself first goes along with even in the book, where it talks about putting on your own air mask first.

00:16:00.796 --> 00:16:09.554
So the care, the caregiver, is going through that same mental process and needs to go through that same mental process that we're asking of ourselves.

00:16:09.554 --> 00:16:18.264
Right, but that was, that's what I use, that phrase all the time Put on your own air mask first, because I'm worthless to anybody if I'm not OK.

00:16:18.264 --> 00:16:22.166
And and for the person that's now being diagnosed, same thing.

00:16:22.166 --> 00:16:22.726
Yes.

00:16:22.986 --> 00:16:40.707
Right, get your head around this, get comfortable with this and I don't know for me if the conversations leading up to it ever really fully prepare, but just knowing that you've set it up in a way like your grandparents, with the binder, that's invaluable.

00:16:40.748 --> 00:16:57.207
I just went through this with a family member that passed and he had three large binders that covered every possible scenario every what, if, every when it was awesome and it really took a lot of the burden off of the rest of us.

00:16:57.207 --> 00:17:01.184
So I think there's a lot of things we can do to prepare that I love.

00:17:01.184 --> 00:17:16.348
The other thing that I think too, with Alzheimer's again in the book that we talk about is their behavior when they've been diagnosed is sometimes out of their control, and wrapping our heads around that as well, I think, is huge, hugely important.

00:17:17.460 --> 00:17:24.404
There's more research coming out that shows that your behavior can be affected up to like 15 or 20 years before you're even diagnosed.

00:17:24.404 --> 00:17:25.326
I mean, these are things.

00:17:25.326 --> 00:17:31.730
It's a disease that makes changes in your brain so far before you're diagnosed officially.

00:17:31.730 --> 00:17:41.873
And I was just talking with somebody who found out that their father was having an affair on their mom for years and he was just diagnosed with dementia.

00:17:41.873 --> 00:17:46.151
And then we're having a really big conversation about like, could that have been the dementia?

00:17:46.151 --> 00:18:00.580
We don't know for sure, but it's just a very painful thing to have to think about and to have to analyze after you have the diagnosis If your partner or your loved one has been behaving erratically or making choices that don't seem like them.

00:18:01.564 --> 00:18:02.847
Just to speak to that real quick.

00:18:02.847 --> 00:18:31.631
I feel very strongly that much of my mom's personality has remained intact through this journey, and that's why I think it's another reason why I think it's important to start having these conversations now, because I think that years, even decades, before a diagnosis, we kind of need to get ourselves right, because we may not have as much control over those habitual patterns that we display day in and day out.

00:18:31.631 --> 00:18:35.270
You know, for instance, my mom never, or never, accepted help.

00:18:35.270 --> 00:18:43.784
I can trace this back to being a teenager and me vacuuming, and her saying you're not doing it right, just let me do it.

00:18:43.784 --> 00:18:51.349
Or my stepdad offering to do something at the house changing a doorknob and my mom saying no, you're not going to do it right, I'm just going to do it.

00:18:51.470 --> 00:19:08.372
Well, that inability to accept help has now moved into her inability to accept help as I'm dressing her because she is unable to dress herself due to dementia, and so I think it's important to realize like we take these same traits with us.

00:19:08.372 --> 00:19:11.026
It doesn't just necessarily completely go away Now.

00:19:11.026 --> 00:19:23.253
There are certain types of dementia that may affect the personality more strongly than others, but those habitual patterns, those ways of being, they don't just go away.

00:19:23.253 --> 00:19:35.492
And so you know, I have been training myself to accept help when my husband offers help, instead of my natural inclination to say no, no, no, I've got this, to say yo, yeah, this would be great.

00:19:35.492 --> 00:19:37.006
Yeah, ken, please help me out.

00:19:37.006 --> 00:19:53.933
It feels weird at first, it doesn't feel natural, but I'm basically trying to set new neural pathways so that when I, if I'm in my eighties and I do have a cognitive impairment, that will be the natural inclination of my mind to accept help rather than refute it.

00:19:56.299 --> 00:19:57.544
Okay, so all of this is all the stuff's going through my head.

00:19:57.544 --> 00:19:58.025
I'm your mother, Jessica.

00:19:58.025 --> 00:20:00.111
I'm just going to tell you nobody helps me.

00:20:00.519 --> 00:20:04.490
I'm almost embarrassed when people try to help me and mine isn't.

00:20:04.490 --> 00:20:05.571
I can do it better.

00:20:05.571 --> 00:20:06.840
It's I can do it faster.

00:20:06.840 --> 00:20:08.323
I never could do it better.

00:20:08.323 --> 00:20:10.625
It's just I can't wait for you to get it done.

00:20:10.625 --> 00:20:15.711
I never had parents with Alzheimer's, but I had parents that were sick, died in their nineties, long distance.

00:20:15.711 --> 00:20:17.875
I felt compelled to take care of them.

00:20:17.875 --> 00:20:18.576
I love them.

00:20:18.576 --> 00:20:26.300
I don't care.

00:20:26.300 --> 00:20:27.624
If you told me, put your own mask on first, I would have been.

00:20:27.624 --> 00:20:28.164
I want to do this for them.

00:20:28.184 --> 00:20:36.863
When you say in your book that say things like take care of yourself, get a massage, go exercise, that was last on my list, but I also was young enough that I could fly back and forth.

00:20:36.863 --> 00:20:42.525
I don't want that for my children, so I don't want to change my neuropathways to want help.

00:20:42.525 --> 00:20:45.893
I think that you never understand a situation until you're in it.

00:20:45.893 --> 00:20:50.046
When my mother finally died, she was DNR and I'll never forget this.

00:20:50.046 --> 00:20:55.375
They went in to revive her and I had to say stop, that's what she wants.

00:20:55.375 --> 00:21:01.428
But to say that was the hardest thing that I've ever done in my whole life and I think people don't realize it till they're there.

00:21:01.428 --> 00:21:08.471
I think I know what I'm gonna do I say listen, if I get Alzheimer's, put me away in the cheapest place you can find, don't come visit me.

00:21:08.471 --> 00:21:11.448
And I don't know whether I'm really gonna feel that way.

00:21:11.448 --> 00:21:13.048
What if I don't even know my kids?

00:21:13.048 --> 00:21:14.590
Do I care if they come and visit?

00:21:14.990 --> 00:21:24.105
It's so interesting that you're saying that you don't want to be a burden to your kids, but then also, right before that, you were saying like you did all this stuff for your parents because you love them so much.

00:21:24.105 --> 00:21:26.030
So your kids are going to do that for you.

00:21:26.030 --> 00:21:27.541
They're going to do things.

00:21:27.541 --> 00:21:35.734
So I think that the best thing you can do for them in the long term is be proactive about taking care of your health.

00:21:35.734 --> 00:21:51.521
Be proactive about going to the doctor and not making them do multiple interventions for you, making those plans in place to make their life easier, so that way, if and when you get sick, there's not going to be any guesswork on there and they're not going to be like what would mom want.

00:21:51.521 --> 00:21:55.352
They're going to know because you've already had multiple conversations to spell it out.

00:21:56.039 --> 00:21:57.266
Well, I have a question on this.

00:21:57.266 --> 00:22:05.509
So part of this for me being in the middle of this is that I've got a couple of kids that live near me and my parents live near me.

00:22:05.509 --> 00:22:10.086
So how do you lessen that time commitment?

00:22:10.086 --> 00:22:16.484
To carve out the time to eat well, exercise, get enough, sleep, not stress?

00:22:16.484 --> 00:22:29.446
It's not as easy to do when you're in the middle of it and because I'm right here, I'm the one that gets all of those calls, all of those emergencies, all of those.

00:22:29.446 --> 00:22:30.088
Can you run here?

00:22:30.088 --> 00:22:30.730
Can you run there?

00:22:30.730 --> 00:22:33.925
Because when you are in the middle of it, you're in the middle of it.

00:22:33.925 --> 00:22:36.112
There's not really time for breathing.

00:22:36.112 --> 00:22:44.471
I don't know if there if there's any words of wisdom that we can give to our listeners about that time commitment piece.

00:22:44.471 --> 00:22:45.874
How do you carve it out?

00:22:46.819 --> 00:22:52.201
Yeah, it's very hard when you're in it and, jess, I would love to hear about, like, the things that you've done in your real life.

00:22:52.201 --> 00:22:58.313
But as for the book, we really tried to hit home with that because we know it's an aspirational goal.

00:22:58.313 --> 00:23:04.983
So if we talk about, like, doing five different things for yourself, and we know a reader is able to implement one of them into their life, that's a win.

00:23:04.983 --> 00:23:15.990
Not every day is going to be perfect, not every day is going to be doing something nice for yourself, but if that is, at least we can take the guilt away from that and so when they have that moment they don't feel bad about it.

00:23:15.990 --> 00:23:16.851
That's a win.

00:23:18.153 --> 00:23:27.902
Yeah, and I think part of self-care is boundaries, and I know it can feel impossible.

00:23:27.902 --> 00:23:34.165
I certainly have gone back and forth with overextending myself and having to pull back due to just being completely overwhelmed with all of the help that I'm providing.

00:23:34.165 --> 00:23:43.442
But we have to have some sort of boundary because, at the end of the day, it is our parents' life, it is our kids' life and it is our lives.

00:23:43.442 --> 00:23:46.671
They are all separate Really at the end of the day.

00:23:46.671 --> 00:23:52.332
They are separate, even though it does not feel like it, and every fiber of your being can be telling you differently.

00:23:52.332 --> 00:23:57.542
Every fiber of your being can be telling you differently.

00:23:57.542 --> 00:24:01.873
But I know when, for my situation, when I overextend myself, I often ponder would my mom want me to be in this state of stress?

00:24:01.873 --> 00:24:12.671
I know she would not, and so it is that it's almost like she's giving me advice without giving me advice and it's so beautiful and I'll just pull back very slightly.

00:24:12.671 --> 00:24:30.880
And I think, in terms of, like the time commitment and the time involved, yeah, like when you're in it, like you don't have time to go get a massage you kidding me Like you barely have time to eat, because I have noticed, when I am full-time caregiving for my mom, all the little ways I remove some healthy habits.

00:24:30.961 --> 00:24:32.058
I'm a very healthy person.

00:24:32.058 --> 00:24:38.487
I prioritize good food, movement, meditation, all of those things into my life.

00:24:38.487 --> 00:24:41.016
And I noticed where I kind of cut corners.

00:24:41.016 --> 00:24:48.444
When I'm full time with my mom, for months at a time, I'll be with her and I won't go on as long of a walk or I won't do this or I won't do that.

00:24:48.444 --> 00:24:52.201
My lunch is really quick because I'm more worried about her lunch, things like that.

00:24:52.201 --> 00:24:59.391
But I still, within that, I still prioritize five minutes of sitting quietly in the morning.

00:24:59.391 --> 00:25:04.144
I still prioritize some sort of movement or walk while my mother is still sleeping.

00:25:04.144 --> 00:25:17.915
So, even though it may feel impossible, you know, I'm sure we can all find something five minutes, two minutes or some, some way to continue to care for ourselves, because it being impossible is a script in our mind.

00:25:19.317 --> 00:25:48.642
Right, right, well, and it leads kind of into my next question and Denise and I were both control freaks, but about different things, and relatable, and I think that understanding this idea that we need a team to do this and not just our doctors and the other people that might surround nurses, whatever that might be surrounding us, but how do we engage for me, my siblings and my children in a way that doesn't interrupt their lives, particularly because they don't live in the same state?

00:25:48.642 --> 00:25:51.428
So I am, really I'm what do you call that?

00:25:51.428 --> 00:25:53.932
The first responder, so to speak.

00:25:53.932 --> 00:25:57.202
I'm what do you call that, the first responder, so to speak?

00:25:57.202 --> 00:26:02.280
Right, how do I engage them in a way that I'm honoring their lives and the boundaries that they have, but also getting the support that I need?

00:26:03.242 --> 00:26:06.430
Can I ask why you don't want to disrupt them, like why you use that word?

00:26:07.251 --> 00:26:08.259
So maybe that's the right word.

00:26:08.259 --> 00:26:09.602
It's just that I think it's much.

00:26:09.602 --> 00:26:12.044
They're in different stages of their lives.

00:26:12.044 --> 00:26:18.068
They're in different stages of their lives and so, first for my kids, they do what they can when they can.

00:26:18.068 --> 00:26:22.553
I don't want to ask them for more, because I want them to be on that journey.

00:26:22.692 --> 00:26:27.217
Right that makes sense and my siblings same kind of thing.

00:26:27.217 --> 00:26:33.546
Their lives are in different places than where mine is, so I am the one that has because I live here.

00:26:33.546 --> 00:26:38.454
It's easier for me to drive the 20 minutes over than it is for my sister to get on a plane.

00:26:38.454 --> 00:27:00.647
She still has kids in high school and to be here it's much more difficult but allows them to participate in a way that is helpful for me as much as it is fulfilling for them, because I know they want to help.

00:27:02.369 --> 00:27:04.192
I'm glad you have siblings that want to help.

00:27:04.192 --> 00:27:06.794
That alone is a huge deal, I know.

00:27:06.794 --> 00:27:11.836
For me, something important has been well, two things Naming how I need help.

00:27:11.836 --> 00:27:32.663
As the long distance caregiver, I am the first responder and I have a sister who lives about 40 minutes away from my family, from my mom and my stepdad.

00:27:32.663 --> 00:27:48.200
I am kind of in an opposite scenario than you, and the reason this has played out like this in our lives is because I have the emotional wherewithal to be there for my mom and and my sisters.

00:27:48.902 --> 00:27:50.344
I'm the oldest of three girls.

00:27:50.344 --> 00:27:53.356
They sort of had a different version of my mom.

00:27:53.356 --> 00:28:02.472
They were living at home when my parents went through a divorce and my stepdad moved in, so they were there while I was in college and forming a friendship with my mom.

00:28:02.472 --> 00:28:05.941
So we had just a different relational aspect with my mom.

00:28:05.941 --> 00:28:18.481
That provides me with more motivation to show up and provides them with a little bit less, and for that reason I say what I need, but I don't expect them to always show up in the way that I.

00:28:18.481 --> 00:28:32.481
That may be best for me or my mom, but I do have people in my life that do show up for me and that are rocks for me as a caregiver, because that is like such a huge aspect of this is having a caregiver for the caregiver Right.

00:28:32.481 --> 00:28:42.638
I mean, Kirsten, I'm sure in your life you probably have someone that is supporting you that you can go to, maybe for a hug or a phone call when you just want to like melt.

00:28:43.119 --> 00:28:44.604
Oh, absolutely, absolutely.

00:28:44.710 --> 00:28:45.532
And I do too.

00:28:45.532 --> 00:28:47.779
I have some really phenomenal best friends.

00:28:47.779 --> 00:28:51.238
I have my dad, I have my husband, who is my rock.

00:28:51.238 --> 00:28:58.903
These are the people that are supporting me while I support my mom and my stepdad, jessica something you said changed my life right now.

00:28:59.911 --> 00:29:07.855
Okay, when I talked about how to prepare my kids, or not wanting them to do it, you said something about when you're really stressed out.

00:29:07.855 --> 00:29:11.202
You think, would my mom want me to be that stressed out?

00:29:11.202 --> 00:29:28.193
I think that's a good conversation for me to have with my children because, you're right, they might feel like they need to be there in some way, but what I don't want is them to feel like they're way you know they have, if they have something in their life that's really important, or stressing them out.

00:29:28.193 --> 00:29:30.539
I don't want to be the other piece.

00:29:30.539 --> 00:29:31.602
Does that make sense?

00:29:31.602 --> 00:29:39.477
And I'm going to ask them to ask that question to themselves and give them the permission to ask that question.

00:29:39.477 --> 00:29:49.420
That was really the most valuable piece of advice right now for me, because, instead of telling me to put me in the cheapest place, I can say just ask yourself is this really stressing you out?

00:29:49.861 --> 00:29:57.871
Well, Denise, because, as it was an act of love for you to give care to your parents, some of your children may feel that way too.

00:29:57.871 --> 00:29:58.933
Some of them may not.

00:29:58.933 --> 00:30:08.232
It may not be in their wheelhouse to show up in the same way you did, but by denying your kids the ability to care for you, you're kind of like denying the love that they want to share with you.

00:30:08.232 --> 00:30:23.001
And, yeah, if you, if you could just have this conversation and get to the crux of why you know you're feeling this way and I think you just did, that can be a huge opening to even more conversation and what that really means and what that's that looks like.

00:30:23.001 --> 00:30:26.941
Because, denise, do you really want to be just like put away and wherever, whatever home?

00:30:28.653 --> 00:30:30.359
It depends what my memory is like.

00:30:30.359 --> 00:30:38.178
If I'm really sick, I would like someone to make sure I'm getting the right care, or whatever, but I don't understand dementia and Alzheimer's, you guys.

00:30:38.178 --> 00:30:39.240
So I don't know.

00:30:39.240 --> 00:30:40.855
Will I know where I am?

00:30:40.855 --> 00:30:42.977
Will I care whether I'm well taken?

00:30:43.017 --> 00:30:43.439
care of.

00:30:43.439 --> 00:30:45.557
You will know if you're taken care of.

00:30:45.557 --> 00:30:53.853
You will know if you're taken care of.

00:30:53.853 --> 00:30:54.535
You will know if you are loved.

00:30:54.535 --> 00:30:57.023
You will continue to experience the range of emotion and, I think, the deepest range of emotion, when we get down to it.

00:30:57.023 --> 00:30:58.569
You're going to still notice love and compassion.

00:30:59.589 --> 00:31:08.518
There may be a time when you cannot remember a child's name, but who cares if you know you feel safe and loved around that child?

00:31:08.518 --> 00:31:10.474
And that is a huge thing about dementia.

00:31:10.474 --> 00:31:13.442
So many people ask me does your mother know who you are?

00:31:13.442 --> 00:31:15.233
Well, I could care less.

00:31:15.233 --> 00:31:26.413
Quite frankly, I really don't care, because if I'm going to hang up my own happiness on my mother knowing my name throughout this journey, I am setting myself up for disappointment.

00:31:26.413 --> 00:31:39.903
So why do I care if she says the letters that make up the name Jessica, when all I want is to know my mom feels happy and loved and supported, because truly, jessica is just one of the many roles I play.

00:31:39.903 --> 00:31:41.472
It's not who I am.

00:31:41.472 --> 00:31:43.415
A name is not any of us.

00:31:43.415 --> 00:31:47.762
We could all have a different name right now and still be the same being.

00:31:47.762 --> 00:31:48.984
Could we agree to that?

00:31:48.984 --> 00:31:49.874
So why does it matter?

00:31:49.874 --> 00:31:53.325
With dementia Such a, you know, frustrating thing.

00:31:53.325 --> 00:31:54.009
It doesn't matter.

00:31:54.009 --> 00:31:57.921
What matters is that our person is loved and supported and feel safe.

00:31:58.490 --> 00:31:59.633
I think about, wasn't it?

00:31:59.633 --> 00:32:07.380
Justice O'Connor's husband that was diagnosed with Alzheimer's, went into a facility, fell in love with another woman.

00:32:07.380 --> 00:32:09.153
She was really happy for him.

00:32:09.153 --> 00:32:16.652
How do you continue to love and care when the relationship is so different?

00:32:16.652 --> 00:32:18.179
You don't have the same.

00:32:18.179 --> 00:32:21.269
Well, I'm going to give you an example, and I actually asked this.

00:32:21.269 --> 00:32:22.692
I have a very dear friend.

00:32:22.692 --> 00:32:23.992
I don't know whether it's Alzheimer's or dementia.

00:32:23.992 --> 00:32:24.512
I have a very dear friend.

00:32:24.512 --> 00:32:25.534
I don't know whether it's Alzheimer's or dementia.

00:32:25.534 --> 00:32:28.756
I think she knows who I am but has no idea how she knows me.

00:32:28.756 --> 00:32:31.939
I struggle with what to talk to her about.

00:32:31.939 --> 00:32:35.402
I love her because she was my mentor through life.

00:32:35.402 --> 00:32:36.762
She's given me so much.

00:32:36.762 --> 00:32:42.547
I try to go visit her and I want to spend a couple hours with her, but I don't know what to do.

00:32:43.111 --> 00:32:45.759
I will tell you that curiosity is your best friend.

00:32:45.759 --> 00:32:51.525
You just need to be there and, like the thing is is like we worry, like what?

00:32:51.525 --> 00:32:52.648
What can we talk about?

00:32:52.648 --> 00:32:53.571
What can we say?

00:32:53.571 --> 00:33:05.515
Well, when you're just there and you're fully there, with your person and not in your mind, worrying about what to say next or what to do, you have a much better chance of going with the flow, whatever that flow means.

00:33:05.515 --> 00:33:13.894
I can't even give you, I can't even tell you what exactly to talk about, because things will naturally arise with your presence in the scenario.

00:33:14.095 --> 00:33:17.863
So now, when she says to me I have all these projects going on.

00:33:17.863 --> 00:33:19.798
You can't imagine how big my team is.

00:33:19.798 --> 00:33:22.890
At first I was saying to my friend you're not working right now.

00:33:22.890 --> 00:33:25.496
Then I started saying tell me about your team.

00:33:25.496 --> 00:33:30.597
I just decided to go with whatever you figured it out, that's the golden ticket, that's it.

00:33:30.930 --> 00:33:34.895
It's to match a mood, just match the mood.

00:33:34.895 --> 00:33:44.119
This is also in the same vein as when someone living with dementia is upset oh so-and-so, stole my whatever, stole my this, stole my this.

00:33:44.119 --> 00:33:48.070
You know, they moved it, they took it from me.

00:33:48.070 --> 00:33:48.771
Okay, so you have two options there.

00:33:48.771 --> 00:33:53.160
You can say no, no, patty, that did not happen, you are wrong.

00:33:53.160 --> 00:33:57.953
Or you can say I'm so sorry to hear that.

00:33:57.953 --> 00:34:01.381
Let's take a look and see if we can find those things.

00:34:01.381 --> 00:34:07.342
Because, again, the person living with dementia is still feeling all the same range of emotions.

00:34:07.342 --> 00:34:11.255
They just want to be heard, they want to be understood.

00:34:11.255 --> 00:34:13.954
Your friend just wants to.

00:34:13.954 --> 00:34:16.782
They want to talk about their team, hear about that team.

00:34:16.782 --> 00:34:27.173
You nailed it, denise being able to switch and to know okay, maybe she just wants to talk about this and allow her to talk about it.

00:34:27.173 --> 00:34:28.780
What's the harm in that?

00:34:29.329 --> 00:34:35.896
Well, at the beginning you felt like you were helping them by saying we already did, that I did come yesterday.

00:34:35.896 --> 00:34:40.420
And then I realized, as she got worse, that wasn't helping anything.

00:34:40.942 --> 00:34:42.856
Right, and there is nuance there, for sure.

00:34:42.856 --> 00:34:44.032
Yeah, you have to.

00:34:44.172 --> 00:34:45.094
It seems to me.

00:34:45.094 --> 00:34:49.373
It took me time to realize that I better just start agreeing.

00:34:49.474 --> 00:34:56.382
Yeah, I mean we're all human, we're all trying to figure it out, and that's where having grace and compassion for yourself on this journey matters a lot.

00:34:56.461 --> 00:35:04.153
I look back on old videos, back to 2017, and you know I'm eye rolling my mom some of the things she says and I.

00:35:04.153 --> 00:35:08.574
I'm kind of embarrassed by that, but at the same time, this was all new to me too.

00:35:08.574 --> 00:35:11.820
I I have never once read a book on Alzheimer's.

00:35:11.820 --> 00:35:15.315
The only book that I have thumbed through is Dana's book.

00:35:15.315 --> 00:35:26.780
I have never read anything about this disease, it's true, and it's just wild to me that I was able to intuitively come to these conclusions throughout my journey.

00:35:26.780 --> 00:35:28.403
But I'm sub two.

00:35:28.403 --> 00:35:32.746
None of us are perfect and I'm sure I'll mess up, more mess up, quote, unquote.

00:35:32.826 --> 00:35:34.873
I guess we're not really messing up if we're trying.

00:35:35.916 --> 00:35:42.585
I think that's valid and I one of the first things about the book and it's I think it's towards the beginning of the book where it talks about grieving.

00:35:42.585 --> 00:35:54.210
And we're not just grieving, it's not just that you grieve the loss of a person, but you're grieving the loss of all the change and it might be in order to be this caregiver.

00:35:54.210 --> 00:36:02.954
You're giving up your career, money, relationships, your own independence to just take off at a moment's notice and travel with your spouse or whoever.

00:36:02.954 --> 00:36:25.655
So I love that part of the book and I hope others will read this and appreciate that we're mourning lots of different aspects when our whether it's our parents or anybody else when that diagnosis hits, and to give ourselves the space and the grace to really do that mourning.

00:36:25.655 --> 00:36:34.702
My question is how do you not get stuck in that grief and that anger while you're also, at the same time, having to be the caregiver?

00:36:34.702 --> 00:36:35.143
It's hard.

00:36:35.143 --> 00:36:36.351
You don't have as much space.

00:36:37.775 --> 00:36:39.719
Realize that everything is temporary.

00:36:40.762 --> 00:36:48.824
Exactly that and just being mindful about your situation and checking in with your feelings and being open to happiness and positive things.

00:36:48.824 --> 00:36:59.635
And, like Jess said earlier, everybody thinks that this diagnosis is like doom and gloom and the end of the world, but there's still so much love and there's so much happiness even way into a diagnosis.

00:36:59.635 --> 00:37:03.161
So just be kind to yourself.

00:37:03.963 --> 00:37:09.936
One of the things we haven't discussed and most of our listeners are older and this is another thing I think our adult kids have to think about.

00:37:09.936 --> 00:37:16.369
When you're a caregiver to a romantic partner, your husband or your wife is diagnosed, you're fine.

00:37:16.369 --> 00:37:21.922
Number one what role can our adult children play in possibly helping the other parent?

00:37:21.922 --> 00:37:30.434
And number two, how do us, as the spouse of the person that might be diagnosed, deal with losing our partner in many?

00:37:30.434 --> 00:37:32.701
I mean, you don't lose them, but you lose them in many ways.

00:37:33.429 --> 00:37:42.619
Yeah, this is another one that I ponder a lot, because I'm in such a wonderful relationship and I wonder what it would be like if that day ever comes.

00:37:42.619 --> 00:37:46.505
And what that makes me do is not worry.

00:37:46.505 --> 00:37:52.244
It just makes me be more present with him now, because none of us know what's going to happen.

00:37:52.244 --> 00:37:52.806
We can all.

00:37:52.806 --> 00:37:56.976
Something could happen tomorrow in a car, something could happen walking.

00:37:56.976 --> 00:37:57.898
We never know.

00:37:57.898 --> 00:37:59.851
We set up these big things like you know.

00:37:59.871 --> 00:38:01.695
How is it going to be 30 years from now?

00:38:01.695 --> 00:38:02.697
Well, I don't know.

00:38:02.697 --> 00:38:11.284
Let's just be here now and see, because I feel like otherwise we're kind of wasting our time and energy worrying about the future.

00:38:11.284 --> 00:38:18.123
But I am sure, when it comes to a spouse, that that change is incredibly hard.

00:38:18.123 --> 00:38:20.798
I'm watching my stepdad go through it with my mom right now.

00:38:20.798 --> 00:38:27.197
And to answer one of your other, your other question, how do we support the other person in that relationship?

00:38:27.197 --> 00:38:28.820
I support my stepfather.

00:38:28.820 --> 00:38:30.282
It's hard.

00:38:30.282 --> 00:38:37.222
It's the other biggest challenge for me of this, of this entire puzzle, and that's because he will also not accept help.

00:38:37.222 --> 00:38:54.389
So I think, before I can even tell you the ways that I help him, I think it's just really important for all of us to get into a mode of accepting help, because, I mean, we are all going to need help one day, whether it be because of an illness or because we're caring for someone else.

00:38:54.389 --> 00:38:57.800
But we need to just get better at accepting help as a society.

00:38:59.532 --> 00:39:01.730
You know, you sort of said two different things.

00:39:01.730 --> 00:39:04.777
So let's get prepared, but let's live in the moment.

00:39:04.777 --> 00:39:20.277
So you're right, you don't want to think what's going to happen in 30 years, but because I'm now at an age where I'm surrounded with people that are facing some of these things my husband and I always talk about, should this happen to you, or this happened to me, what would you want?

00:39:20.277 --> 00:39:20.717
What would you?

00:39:20.737 --> 00:39:22.481
want me to do that sort of thing.

00:39:22.481 --> 00:39:26.597
I think it's because I lost my parents when I was younger and I knew what needed to be done.

00:39:26.597 --> 00:39:27.478
Does that make sense?

00:39:27.478 --> 00:39:32.355
But I think, yes, you have to live in the moment but at the same time, prepare for the future.

00:39:33.237 --> 00:39:33.818
Absolutely.

00:39:33.818 --> 00:39:35.443
Both can be true at the same time.

00:39:35.443 --> 00:39:43.974
But there is preparing and using our mind logically to prepare, and then there's overthinking and over worrying.

00:39:43.974 --> 00:39:46.648
That's when preparing gets out of balance right.

00:39:46.648 --> 00:39:50.681
So so there is that that you know duality there.

00:39:50.681 --> 00:39:58.342
But one thing that you're so prepared, Denise, and I know you're the one asking questions, but I do have a question for you in your preparedness.

00:39:58.342 --> 00:40:04.876
I mean, have you talked to your kids about how you want to feel as you're, as you're?

00:40:04.876 --> 00:40:06.018
You want to feel as you're, as you're dying.

00:40:06.117 --> 00:40:06.599
What do you mean?

00:40:06.599 --> 00:40:07.099
What do you mean?

00:40:07.780 --> 00:40:22.514
feel I mean, have you talked about like, if you, if you have a perfect death, when you have a long maybe period of dying, have you talked to your kids about you know, I really don't want a lot of people there.

00:40:22.914 --> 00:40:25.117
I would like more people there, I would like this to be a big deal.

00:40:25.137 --> 00:40:26.318
Do you talk about things like that?

00:40:26.318 --> 00:40:36.458
I talk about it and I have it written out Great, Because those are some of the pieces I don't know for my mom and that's really weighing heavily on me.

00:40:36.458 --> 00:40:45.900
We have the power of attorney, we have the will, we have arrangements, things like that which she planned very begrudgingly, but there are small things that I want to know.

00:40:45.900 --> 00:40:47.402
I've written my obituary.

00:40:48.302 --> 00:40:50.766
Wow, wow.

00:40:50.766 --> 00:40:52.094
I love that about you.

00:40:54.213 --> 00:41:04.940
I just know that there's a lot to deal with when you lose a parent, because my mother actually wrote her obituary very little, but you forget as you get older things you did.

00:41:04.940 --> 00:41:08.280
She was an archery champion in Ohio during high school.

00:41:08.280 --> 00:41:09.795
I never knew that.

00:41:09.795 --> 00:41:12.036
Well, I want to know those things.

00:41:12.036 --> 00:41:18.440
So, I sort of talk about who I was, but this is what I hope they remember and know about my life.

00:41:18.440 --> 00:41:19.342
Do you know what I mean?

00:41:19.742 --> 00:41:20.545
I love that.

00:41:20.545 --> 00:41:22.235
I'm so proud of you, Denise.

00:41:22.235 --> 00:41:23.219
That's amazing.

00:41:23.449 --> 00:41:25.739
So that kind of stuff's important to me.

00:41:27.250 --> 00:41:31.442
I hope that your kids understand what a gift you are giving to them Honestly.

00:41:31.442 --> 00:41:36.074
If I see them anytime soon, I will just remind them of that for you.

00:41:36.333 --> 00:41:41.409
There's a lot of obligation in being a child to a parent who loved you.

00:41:42.690 --> 00:41:52.257
There is, there's a lot of obligation, so you have to separate, I think, obligation from care or whatever.

00:41:52.257 --> 00:41:54.643
Like you talked about your sisters, your siblings.

00:41:54.643 --> 00:42:02.391
Some of you have less obligation than the other, but you Jessica seems to have a caregiving personality.

00:42:02.391 --> 00:42:04.396
Not all people have that.

00:42:04.396 --> 00:42:09.206
Your sisters might not get the same joy and reward that you're getting.

00:42:09.206 --> 00:42:10.135
Does that make sense?

00:42:10.135 --> 00:42:12.545
And if that's the case, you want your kids to help.

00:42:12.545 --> 00:42:16.599
But I don't think your mom is that worried about your sisters that aren't there.

00:42:17.300 --> 00:42:18.202
I don't think so either.

00:42:18.202 --> 00:42:19.184
I don't think so.

00:42:19.184 --> 00:42:22.940
She loves them and she loves to see them, and all that's great.

00:42:22.940 --> 00:42:28.161
But I think she, I think the way things have played out, make a lot of sense to everybody, and that's fine.

00:42:28.240 --> 00:42:33.282
So I like asking questions where the other, because we're our audience and.

00:42:33.282 --> 00:42:39.081
I are our listeners, so we all need to be asking questions to each other about all this.

00:42:39.081 --> 00:42:44.097
But in trying to get around this, dana, what do you hope people get out of your book?

00:42:44.097 --> 00:42:47.827
What are the main things you hope people get out of your book?

00:42:48.594 --> 00:43:01.447
Being less overwhelmed about the situation, being more feeling empowered and knowledgeable about the disease and caregiving itself, and just knowing that there's so many amazing resources out there that are able to help you.

00:43:01.447 --> 00:43:07.563
And it's one of the hardest parts is just putting them all into one place and tracking them down, which is what we tried to do at the very end.

00:43:07.795 --> 00:43:13.483
There's even such just a beautiful caregiving community online, which is how I met Jessica and how we got connected.

00:43:13.483 --> 00:43:20.063
There's so much information out there and just want people to know that they're going to be okay.

00:43:20.063 --> 00:43:23.577
Keep trying and keep showing up with love and it's going to be okay.

00:43:24.420 --> 00:43:26.284
I loved the book and I don't have.

00:43:26.284 --> 00:43:38.478
My situation my parents has nothing to do with Alzheimer's or dementia, but the caregiving piece I just I related to so much of it and there were so many nuggets in there that have been invaluable.

00:43:38.478 --> 00:43:53.106
I hope that, whether people do have somebody in their lives that have been diagnosed with dementia or Alzheimer's, that they still read this book, because we're all caregivers in some way at some point and we need the.

00:43:53.106 --> 00:43:54.009
We need the information.

00:43:54.815 --> 00:43:58.246
Yeah, everybody's going to be a caregiver at some point and also probably need care at some point, and we need the information.

00:43:58.246 --> 00:44:00.454
Yeah, everybody's going to be a caregiver at some point, and also probably need care at some point.

00:44:00.474 --> 00:44:00.795
Oh, that too.

00:44:00.795 --> 00:44:11.927
I don't know if either of you can answer this, but before we do our closing, I know there's not a cure for Alzheimer's or dementia, but is there any research going on that is hopeful for all of us?

00:44:11.927 --> 00:44:21.166
Also, I never knew any of this, but now I'm in an age where a few people have gotten diagnosed with Lewy body dementia, which is a very fast paced.

00:44:21.166 --> 00:44:29.646
It's been a sad experience for a few people around me, but I'd like to know a little bit about the research going on, if either of you know anything to be hopeful for.

00:44:30.530 --> 00:44:37.568
Yeah, there's a couple of medications on the market which they're promising, but they also have their downsides.

00:44:37.568 --> 00:44:50.445
But, if I can give a plug, there's this organization that we've been working with called Heart of the Solution, and it is all about exploring the link between vascular health, so your blood flow, your cardiovascular and brain health.

00:44:50.445 --> 00:44:54.065
From what I've read, I mean, what's good for your heart is good for your brain.

00:44:54.065 --> 00:44:57.567
Living a healthy, active lifestyle is going to be good for your entire body.

00:44:57.567 --> 00:45:00.275
So that's just been so interesting to explore.

00:45:00.336 --> 00:45:04.255
On my end, but isn't some of it genetic, like I was going to ask this to you, jessica.

00:45:04.255 --> 00:45:08.009
Do you ever worry now that your mother has been diagnosed at 61?

00:45:08.009 --> 00:45:10.938
What's my predicament, or could this happen to me?

00:45:11.961 --> 00:45:18.400
Yeah, I don't really live my life that way, Like worrying about what's terrible, but but I know, no, hear me out, Denise.

00:45:18.400 --> 00:45:20.023
I have not always been like this.

00:45:20.143 --> 00:45:32.391
Okay, I have gotten to this place of being okay through a daily meditation practice and through mindfulness practices, just getting to know that the habitual patterns of my mind, I came to learn.

00:45:32.391 --> 00:45:36.284
Wow, I usually freak out about the future, so why don't I?

00:45:36.284 --> 00:45:43.864
Instead, I tell myself everything's going to be okay and it just it takes some training Was there a program you followed or something that we could share?

00:45:44.454 --> 00:45:50.855
Yeah, so I have studied with Ram Dass, sharon Salzberg, joseph Goldstein and Pema Chodron.

00:45:50.855 --> 00:45:58.942
I've studied with all of those spiritual teachers in person and have garnered so much from them, and you can find their videos on YouTube.

00:45:58.942 --> 00:46:00.085
You can just look them up.

00:46:00.284 --> 00:46:04.244
Will you send me the names though, because I'm not sure I got, and then I'll share it in our episode notes.

00:46:04.244 --> 00:46:06.302
And it sounds like something I could use.

00:46:06.682 --> 00:46:17.809
Yeah, absolutely, but to to piggyback on what Dana was saying, while there's no cure at this time, like Dana said, taking care of our brain is so incredibly important.

00:46:17.809 --> 00:46:22.646
The brain health is also tied to your gut health, to your heart health.

00:46:22.646 --> 00:46:26.164
These things, these systems of the body, are all playing together.

00:46:26.164 --> 00:46:28.239
So eat a lot of vegetables.

00:46:28.300 --> 00:46:43.186
y'all you know eat vegetables, move your body and be nice to yourself, because when we think about the way we talk to ourselves through all of our waking hours, don't we think that plays into who we are at some level?

00:46:43.186 --> 00:46:50.481
If we are consistently telling ourselves we are not enough, we're not doing enough, we're not showing up enough, don't you think that matters?

00:46:50.481 --> 00:46:56.307
I tell myself things like you're amazing, jessica, you got this, you can do this.

00:46:56.307 --> 00:46:59.742
I'm so proud of you and I actively work to do that.

00:46:59.742 --> 00:47:01.822
That's why I am the way that I am.

00:47:01.822 --> 00:47:03.541
It's not that I was born like this.

00:47:03.541 --> 00:47:20.563
If I just let my mind be as it was, I would be like my mom and be stressed, burnt out, never taking rest, and so getting more of a control over that habitual self-talk really matters and plays into our overall health and wellness.

00:47:21.264 --> 00:47:26.947
Okay, we're going to wrap up, but we always ask our guests I hope you guys saw this in our email for two takeaways.

00:47:26.947 --> 00:47:28.918
I mean, that was a great one, jessica.

00:47:28.918 --> 00:47:37.418
If you want to mention it again, you can, but we like maybe each of you give us one that you hope our listeners leave this episode with what would other than buy the book?

00:47:37.418 --> 00:47:39.764
You can't say buy the book or download the book.

00:47:39.764 --> 00:47:41.016
What do you want them to take?

00:47:41.077 --> 00:47:41.297
away.

00:47:41.297 --> 00:47:43.224
I'll go first.

00:47:43.224 --> 00:47:58.802
So I want you to take away the fact that everything is temporary, and why this is important is because impermanence shows us two things One, that the hard stuff, the uncomfortable stuff, the stuff that we really don't like, the icky feelings, are not going to last forever.

00:47:58.802 --> 00:48:06.164
But neither are the happy things, neither are the joyous moments, neither are the amount of sunsets that we see.

00:48:06.164 --> 00:48:18.737
So allow impermanence and the fact that everything is always changing to let you see that you can get through the harder times and let you see to really embrace the times that feel good.

00:48:18.737 --> 00:48:20.460
I love that.

00:48:20.920 --> 00:48:22.224
Okay, Dana, you're on.

00:48:22.224 --> 00:48:27.199
Communicate, Just have hard conversations, have the scary conversations.

00:48:27.199 --> 00:48:28.342
Have them often.

00:48:28.342 --> 00:48:31.036
Your kids are not too young to talk about it.

00:48:31.036 --> 00:48:36.394
Your loved ones are not too old to talk about it either, and it's going to be scary.

00:48:36.394 --> 00:48:39.681
But it's also scary to not know any of that stuff.

00:48:39.681 --> 00:48:42.728
So be proactive, take control and just talk.

00:48:43.436 --> 00:48:43.817
Love that.

00:48:43.817 --> 00:48:45.681
Thank you both so much.

00:48:45.681 --> 00:48:46.865
We really enjoyed this.

00:48:47.135 --> 00:48:47.838
Thank you.

00:48:47.838 --> 00:48:50.856
Yeah, this was a pleasure, right.

00:48:51.036 --> 00:48:51.860
Thank you guys.

00:48:52.181 --> 00:48:52.923
So great to talk.

00:48:54.215 --> 00:48:55.338
Well, that's a wrap.

00:48:55.338 --> 00:49:00.382
This was one of those experiences that I think we're all going to experience at one time or another.

00:49:00.382 --> 00:49:01.686
We want to be prepared.

00:49:01.686 --> 00:49:06.244
We see that about so many different times of our lives and here they're giving us this manual.

00:49:06.244 --> 00:49:08.056
They talk about everything.

00:49:08.418 --> 00:49:10.342
I know that it is driven by Alzheimer's.

00:49:10.342 --> 00:49:11.565
It is more than that.

00:49:11.565 --> 00:49:12.675
That's in this book.

00:49:12.675 --> 00:49:15.041
There's just invaluable information for everybody.

00:49:15.041 --> 00:49:16.445
Please check this out.

00:49:16.445 --> 00:49:21.847
Go at the Alzheimer Caregivers website at alzheimerscaregiversorg.

00:49:21.847 --> 00:49:28.483
They just published a free guidebook that walks readers through each stage of the disease and how to provide the highest level of care.

00:49:28.483 --> 00:49:30.222
There's so many resources in this book.

00:49:30.222 --> 00:49:40.346
I hope that you'll check it out, and thank you so much to Connie Gorant-Fisher, our audio and production engineer, who helps make everything look and sound fabulous.

00:49:40.346 --> 00:49:44.985
And write to us at biteyourtonguepodcast at gmailcom.

00:49:44.985 --> 00:49:57.277
Please share your comments and ideas Ideas, ideas, it is and please consider supporting our efforts by going to our website, biteyourtonguepodcastcom, and buying us a virtual cup of coffee.

00:49:57.277 --> 00:50:05.523
Don't forget to follow us on Facebook and Instagram, and remember, sometimes you just have to bite your tongue.