Author Event! Emma Heming Willis & Patti Davis
[0:00]and everything.
[0:01]Okay.
[0:02]Testing.
[0:03]Thank you guys for coming.
[0:04]Yes.
[0:05]I know you have a sold out house.
[0:06]I love this.
[0:07]So thank you for moderating.
[0:09]You're welcome.
[0:10]So I think maybe we should start with, when people hear dementia, they think of Alzheimer's,
[0:16]but they think of memory loss.
[0:19]And front to temporal dementia is very different.
[0:22]So can you just give like an overview of the princes, how FTD is different to Alzheimer's?
[0:29]Not from Alzheimer's, because that is typically what people think of.
[0:32]Yeah, sure.
[0:33]So when people think of dementia, they hear of dementia, you automatically think most people
[0:38]automatically think of memory loss, Alzheimer's, because that is the most common form of dementia.
[0:44]But FTD is different.
[0:47]So FTD stands for frontal temporal degeneration or dementia.
[0:51]It is the most common form of dementia for people under the age of 60.
[0:56]And it can affect a person in three different ways.
[0:59]Behavior, motor, and behavior, and communication.
[1:06]So for Bruce, he was diagnosed with something called PPA.
[1:12]So it was FTD, PPA, which is primary progressive ofphasia.
[1:16]And for him, it was affecting his language and communication.
[1:21]So yeah, so when people ask me, does he know who you are?
[1:26]Does he remember you?
[1:27]And I said, yes, he does, because he doesn't have Alzheimer's.
[1:30]He has FTD.
[1:31]And our brains do so much more than just hold memories.
[1:36]So I think that has been even good for me to learn.
[1:41]Because again, I was as a person when I heard dementia, I would think Alzheimer's.
[1:46]There are 120 different forms of dementia.
[1:52]And by the way, the other version of FTD, the behavioral version, it's really, really brutal.
[2:00]It is.
[2:01]It is.
[2:02]I mean, I've heard stories of that looks like it's a hard, it's a hard, on kind disease.
[2:12]And the other one of the other dimensions are.
[2:15]But FTD, they kind of say, is the black belt of all dementia, and is truly unkind.
[2:22]Right.
[2:23]So one of the other differences between Alzheimer's and FTD is that with Alzheimer's,
[2:31]especially in the early stages, the person is aware of what they're losing.
[2:36]They're aware that they're losing cognition.
[2:39]But they might forget that they know it.
[2:42]But there is an awareness there.
[2:45]And I know I've heard you talk about the fact that Bruce doesn't.
[2:48]In fact, you told me the word for it.
[2:50]And a, and a, and a, and a, and a, I only just learned that from her the other day.
[2:54]I didn't know there's a word for it.
[2:56]Yeah.
[2:57]But he doesn't know that he has it.
[2:58]Yeah.
[2:59]So how do you communicate with someone that changes that are going on around them?
[3:04]And because of them, if they don't know that there is a problem with them.
[3:07]It's very difficult.
[3:08]It's kind of like the blessing in the curse.
[3:10]So Anna Signozia is a neurological condition that affects people with FTD because that it happens in the front part of the brain.
[3:23]Where they can't actually tap into the fact that they have something happening.
[3:30]And for some people, you would think, Oh, well, you know, I'm trying to get them in the doctor and they're not understanding that they need to go to the doctor.
[3:36]And they don't understand why don't they understand what they're doing.
[3:39]It's not denial.
[3:40]They're not trying to, you know, dig their heels in.
[3:43]Their brain literally does not allow them to understand what is happening.
[3:49]So Anna Signozia, for me, has been a blessing in a curse.
[3:54]The curse is that it's been very, it was very difficult to try and communicate to my husband about what I felt was happening.
[4:04]And the blessing is that I'm so happy that he doesn't realize that he has this disease.
[4:11]Yeah.
[4:13]Yeah, I know my father, you know, in the early stages, he used to say, I have this thing.
[4:20]And then at one point he stood in the middle of the living room and he said, I don't know where I am.
[4:26]I mean, it's heartbreaking.
[4:27]No, it's heartbreaking.
[4:28]I mean, if I would have ever heard Bruce say to me, like, I'm scared.
[4:33]I don't know what's going on with me or to understand what the diagnosis was.
[4:38]It would have, like, it would have killed me.
[4:41]It really would have.
[4:42]But then you have to navigate.
[4:44]I guess the bad part of it is you have to navigate, okay, these changes are going to happen around you.
[4:51]And he doesn't understand why.
[4:54]Right?
[4:56]And is what it is.
[4:57]Yeah.
[4:58]And that is what they say within the FTD community.
[5:00]just is what it is. And that's why it is very hard on on caregivers, you know, to try and manage it and usher their
[5:09]person through when they really don't have an understanding that what they might be doing or saying is an
[5:15]appropriate or, you know, whatever that might be, that's more of the behavior variant. But it is it's it's hard. It is
[5:24]very complicated. Yeah. The other just sort of carrying through this thing, the other thing about all
[5:32]timers is that as the disease progresses, it's almost easier in a certain sense because the person
[5:41]isn't doing battle anymore with the disease. They've sort of drifted. They're living in it somewhere else. Does that
[5:50]happen with FTD? I think dementia plays out differently in so many people. I think as this disease has
[6:00]progressed, it has in a certain respect gotten easier, you know, I guess, which is hard, even a hard thing to say. But
[6:09]but I mean, with all summers, that is definitely true because they're they've drifted away, like I said from that
[6:16]battle ground of trying to hold on and, you know, yeah, I mean, I think it's it's this is a progressive disease. You
[6:24]don't bounce back from any form of dementia. So, you know, if that person will probably just continue to drift. Yeah. I think it
[6:35]brings up another sort of another challenge. So for for caregivers that you have to be okay with the fact that
[6:44]they're in another world, they're very far away. And for the most part, they're okay where they are, you know. And I
[6:52]think like what the blessing is and this is that it's a slow progression. It doesn't like you're not it's not all of a
[6:58]sudden overnight. Right. So you adapt and you move through it with them in this sort of slow progress
[7:08]progression. It's just hard to watch things being taken from your person. Right. But you
[7:17]I think what I was kind of getting out with the challenge was things are being taken from them,
[7:22]except you don't know where they're living in that world. So maybe, you know, I'm saying yeah. So maybe
[7:28]wherever they're living, like when I was running, I used to run a support group for six years for
[7:35]caregivers and a man, you might know this story. A man whose mother had Alzheimer's and was in a
[7:44]facility and leave visited, you know, every few days or something said, I feel so badly for her
[7:50]because every time I go to visit her, she's just sitting by the window staring out and she doesn't
[7:55]interact with any of the other residents. And I'm the only interaction she has. So she's so lonely
[8:02]and so desolate. I mean, he was deciding that she was lonely and desolate. And I said to him,
[8:08]you have no idea where she is in her head. She could be walking on a moonlit beach with a handsome
[8:14]man falling in love, waves lapping over their feet. And then you show up and interrupt the whole
[8:20]thing. Right? I mean, it's kind of like an act of faith to go, okay, I miss this person. I miss
[8:28]my loved one. But and they're in a different world and I can't enter that world. But they're okay.
[8:36]I have to have faith that they're okay. Yeah. I mean, I think for myself as well, I think I used to
[8:42]do that. It was very easy for me to get into Bruce's head and into his body. He must be thinking
[8:48]this. He must be experiencing that. And that stress and that anxiety where I had learned that,
[8:55]you know, I'm just projecting. Yeah. And this might not be his experience at all. Exactly.
[9:02]So what and I talked about this in the book, it's um, what is it? And pathic distress. Where
[9:13]yeah, you're thinking that your person is experiencing something that they might not be.
[9:18]Right. So what I have learned is that when I kind of have to protect myself and put this bubble
[9:25]around myself, it's like an armor that that way when I'm with my husband, I'm not in trying to get
[9:33]into his body of like, what is he thinking? What does he feel? But instead, I could just know that
[9:38]it's he's okay. He is actually okay. Yeah. But I have to protect myself from that. Yeah. Because it's
[9:45]easy to get sucked into that mode. Right. But it's not healthy. No, it's not. I think it's like
[9:52]it's sort of training yourself to think differently. You know, and I think it's particularly
[9:57]difficult in a if it's your.
[10:00]partner, your spouse versus your parent, because you had a relationship. I mean, you had
[10:05]you were in each other's lives and the heads and worlds and, you know, he's far away.
[10:12]Far away, but yet still very connected. You know, we still are, our relationship has changed
[10:21]and it is altered, but we still have so much connection. There is still so much laughter and love.
[10:30]And that is still very present for us. So yes, at times, you know, he is blissfully really in
[10:39]his own world, but yet we still have a really beautiful connection that is different to what most
[10:48]would experience with their spouse. But still beautiful.
[10:53]That sort of leads me to those moments when the disease kind of falls away and there's like
[11:02]an aperture in the disease and you see that person. I told myself at the beginning of my father's
[11:08]Alzheimer's that I didn't believe that his soul could have Alzheimer's. And it was really important
[11:15]because then as the disease progressed and there were those moments when it just like
[11:23]opened up and you saw him, you know, and I know you've talked about that. Yeah, yes,
[11:28]there are moments where like the clouds part and, you know, there's a twinkle in his eye and a smirk
[11:35]and a laugh, a gesture, and he's right back to him. And I love being able to have those moments,
[11:47]but they're also extremely heartbreaking. It's very hard to see. It's very hard to see your
[11:53]person come back and then go. Yeah. So that's hard. Yeah, but you have to like, I think,
[12:02]you know, be aware that those moments are there because I think it hurts me when I hear people
[12:09]say, well, they're just not there anymore. Yeah, I know they're gone. They're not there anymore
[12:13]because then I think, okay, but those moments are going to come and you're not going to see them
[12:17]because you already decided that they're not there. Yeah, right. That's not the mode that we're in.
[12:24]Right. And we're still very much present and waiting for those moments. Yeah. Yeah.
[12:31]So let's talk about caregiver stress, which is a very real thing. Doctors know about it.
[12:39]And it's, you know, a sad fact that a lot of caregivers get ill and die before the person that
[12:48]they're caring for. I mean, if you think about it, the person with dementia doesn't have
[12:53]any stress. Every moment's new. It's the caregiver who holds on to everything and
[13:00]that stress weighs on a road's health and weighs on them. And I know you've had your own
[13:06]journey with that like starting with depression when when Bruce was, can you kind of talk about that
[13:13]journey a little bit? Yeah. I mean, even with the caregiver stress. So I didn't ever knew that
[13:18]caregiving could be bad for your health. I did not know. I didn't know about these statistics.
[13:23]Yeah. And Bruce's neurologist sat me down one day and was like, you are burning the candle at
[13:28]both ends. You have two young children and you're caring for your husband and you're doing what
[13:33]with no support. I want to tell you about these statistics. And that, you know, caregiver is
[13:40]dying at a rate much higher than people their own age. And when I heard that, I thought, what are
[13:46]you even telling me right now? I couldn't I couldn't believe that. But then it makes so much sense
[13:52]because we are the last on our list, right? Whereas women, we're already the last on the list.
[13:58]But, you know, then you're caregiving for someone and you're, you know, making their doctors
[14:02]appointments and you're doing all the stuff that you do for your kids and you're not thinking
[14:05]about yourself. So you are missing your mammogram and you're yearly and all of those, you know,
[14:11]types of things that we would normally do and your health just ends up declining. So I was so
[14:20]grateful that I had heard that from the neurologist and I have that in the book because I think
[14:25]it's really important for other people to hear because a lot of people don't know that.
[14:32]And, you know, with that during that time, I was diagnosed with depression because, you know,
[14:38]there was just a lot, there was just a lot going on. And there was a lot of stress and a lot of
[14:44]things that I was trying to handle and trying to handle very quietly because I was nervous about
[14:50]it getting out before we were ready to be able to share. So it was really a really hard,
[14:56]hard time, but caregiving stress is,
[15:00]is a thing. And so I wrote the book to care for the caregiver. Yeah. Because if the caregiver
[15:05]doesn't care for themselves, how will they be able to sustain this journey? You know, we put so
[15:11]much time and effort into this eco-care system. But, you know, what I had learned from so many
[15:18]experts and specialists that I brought into the book is that caregiver is way too long to ask for
[15:23]help. And by the time they ask for help, that whole infrastructure has completely fallen apart.
[15:31]So, I think it's really important as well that we get out of this narrative that caregiving
[15:39]is a solo mission. Because it's not. We need to break that. And that we're not a failure
[15:46]if we ask for help. I thought I was a failure when I was, you know, raising my hand. Like, I don't
[15:51]know if I can do this. Actually, I had to have his neurologists tell me, you need to bring in
[15:57]help. You know, I wouldn't have done it if I wasn't given that permission. You know, I subscribed to
[16:02]this. Well, and I think you're really lucky that you had a doctor who told you that because there
[16:08]are, you know, there are doctors who are really caring in this field and there are doctors who
[16:12]aren't. Yes. I mean, a very prominent doctor when I was running my support group said to me,
[16:18]Alzheimer's is the least profitable area of medicine. So, hence why when you get a diagnosis,
[16:25]they say, check back in, check back in in a few months. You know, there's really nothing,
[16:29]there's nothing that they're not going to make money off of, you know. So, you're, I mean,
[16:34]that was really impressive that, you know, that a doctor said that. Yeah, I'm very lucky now.
[16:40]I mean, we had to kiss a lot of frogs until, you know, I was able to put a really
[16:46]incredible compassionate team together that now finally listens to me. And, and really helps and
[16:57]supports our family and my husband. And, but that took a while. And not everyone is as lucky
[17:04]as we are now. Yeah. I wonder if, I mean, I think it's probably really common at the beginning of
[17:16]of this illness, no matter what kind of dimension is for people to be depressed. And,
[17:22]I wonder if you see that as sort of a passage that you have to go through,
[17:27]rather than push it away and go, okay, I'm not, you know, I sort of think of it as grief that
[17:32]if you push it away and try to muscle your way past it, it's just going to wait for you and
[17:36]come find you and then maybe you just have to go through it and there are things that you can
[17:42]learn in that sort of shadow land. Yeah. I mean, I think that depression probably was grief.
[17:49]Well, it's part of that. It's definitely part of it. The same thing. Yeah.
[17:54]I think that it's kind of part for the course. I think you go through sort of this,
[18:00]as things progress and things shift and change and so do you, you know, you're grieving and sad and
[18:09]angry and resentful. And, you know, we go through a whole array of different emotions and feelings
[18:19]and a lot that like we think that we're not allowed to share like the anger, like the resentment.
[18:24]I think most people think like, oh, I'm sure that you're really sad and you're grieving. Yes,
[18:30]I am. You know, I also really pissed. Yeah. And I remember I had to take sort of a leap of faith
[18:38]because when I was having those feelings, I felt like I am the worst person in the world. Like,
[18:42]I am the worst wife in the world to have these feelings. And when I was speaking to, thank God,
[18:47]I have this incredible therapist I was working with. And I took a leap of faith and just tried to
[18:53]be very brave and just say, you know, yes, I'm sad and I'm upset, but I'm also having these
[18:58]feelings and I feel really terrible about it. And she was treating another woman whose
[19:04]husband had young onset Alzheimer's. And she said what you're experiencing is absolutely normal.
[19:12]You were having a human experience with human emotions and it is okay for you to have these
[19:18]feelings. What's important is to be able to talk about them. Yeah. So I really wanted to put that
[19:23]forth and center in the book too that yes, we feel sad as we feel good. We feel an array of
[19:29]emotions. And I wanted other caregivers to know that if they have those feelings too, they're not
[19:35]bad. They're not a bad person. No, it just means you're human. I mean, you know, I don't know,
[19:43]it's probably not the same with FTD, but certainly with Alzheimer's, you know, that person can ask
[19:48]the same question 55 times. And people will get annoyed and then they'll feel terrible that they
[19:55]got to deal with their terrible person. Oh, my God, who might be so far? You're a human being.
[20:00]Yeah, I mean, Buddha would get annoyed if someone asks.
[20:05]I'm pretty sure.
[20:08]Yeah, I mean, what's important is that we process these emotions.
[20:11]You know, being able to either speak to a therapist or speak to someone within your community.
[20:16]You know, I'm so lucky I have a friend.
[20:19]Her name is I have you as well.
[20:21]But you know, Franny, who I met through a friend of my husband's
[20:27]her husband had a young onset Alzheimer's.
[20:30]And, you know, she's a cup.
[20:32]She is, you know, a few steps ahead of me.
[20:34]So I've been able to really talk with her and vent and cry and scream and all the things.
[20:41]And she doesn't judge me.
[20:42]She, you know, she gets it.
[20:43]She's been there.
[20:44]So she's such an important person for me.
[20:47]And the unknown set moves a lot faster.
[20:49]Yeah.
[20:50]They cut it when they're older, really fast.
[20:52]So I think it's really important to find your community.
[20:55]And be careful about who you share with.
[20:58]That was going to be my next two years.
[21:00]I knew you were going back.
[21:01]I felt it.
[21:02]I felt it.
[21:03]Yeah.
[21:04]So, I mean, talking to it, but you have to be careful who you talk to.
[21:09]Yes.
[21:10]Because, you know, people can, can mean well and not know what to say.
[21:15]Or they can be judgmental.
[21:17]And so you really have to sort of suss out and be careful who do you talk to.
[21:23]Or as a caregiver is we're already judging ourselves.
[21:25]We're already criticizing ourselves.
[21:27]So it's, we have to be careful about who we share with because they might criticize and judge you.
[21:35]Yeah.
[21:36]So it's, I think that's why finding our community is really important.
[21:40]Finding people in a support group.
[21:43]You know, asking your, your doctors or another family that I could connect with.
[21:49]You know, I think it's really important about making sure you find someone.
[21:54]And, you know, sometimes your, your friends and even your family might not be the right people to try to about it.
[22:01]Yeah.
[22:02]I mean, I think sometimes friends think they're, you know, they're trying to say the right thing.
[22:05]Of course.
[22:06]And they just don't know what to say.
[22:08]Yeah.
[22:09]And then some people are just like I said, like, you know, very judgmental.
[22:12]I mean, my father was sort of deep into Alzheimer's one.
[22:17]I ended up on the phone with somebody I wasn't even friends with.
[22:21]She was a friend of my ex-husband.
[22:23]And I have no idea how I ended up in the phone with her.
[22:26]You know, how that happened.
[22:29]But she, she said that she knew a man who had a cure for Alzheimer's.
[22:36]Boy, here we are.
[22:38]Fairly medical science didn't know about him yet.
[22:41]And, you know, that she could get me an appointment with.
[22:45]But, but he was very particular about who he talked to.
[22:49]So I would have to use her name.
[22:51]Because apparently Ronald Reagan's name wouldn't have done it.
[22:54]And I was very polite, actually.
[22:59]Uncharacteristically, for me in that situation.
[23:02]I was very tight.
[23:03]And I said, well, thank you.
[23:05]But we're kind of deep into this now.
[23:08]So I don't think so.
[23:09]And she said, well, if it were my father, I would want to do whatever I could to help him.
[23:14]I know.
[23:15]I thought, this is why I never liked you.
[23:18]Yeah.
[23:20]Yeah.
[23:21]You have to protect the space.
[23:23]I mean, yeah, I've heard a lot of crazy things.
[23:27]You know, that could possibly cure FTD.
[23:30]But, yeah, you really need to protect yourself from that.
[23:35]And, you know, in the book, I have a chapter that is really for family and friends.
[23:41]To be able to learn how to show up for someone going through, through dementia.
[23:48]I mean, you know, people always will say, you know, there's anything I can do.
[23:52]Yeah.
[23:53]Please let me know.
[23:54]And that's so lovely.
[23:55]Right?
[23:56]But like, the caregiver is already.
[23:58]Right.
[23:59]They're already making so many decisions all the time.
[24:01]So that when you say that.
[24:02]Yeah.
[24:03]It's like, I caregiver will say, you know, I'm good.
[24:07]I got it.
[24:08]We're fine.
[24:09]But what I ask is that caregivers make a list.
[24:13]So because you really need to learn how to accept the help.
[24:16]When someone is asking to support you, you need to be ready to be able to accept that help.
[24:21]So I ask caregivers to do just a little bit of busy work with all the things that they do in a day, in a week and a month.
[24:29]That they could really outsource to a friend.
[24:32]So that when they get that text or they get that phone call, if there's anything I can do, please let me know.
[24:38]The caregiver is ready.
[24:39]Yeah.
[24:40]And they say, actually, yes.
[24:41]Can you take us to our next doctor's appointment?
[24:44]You know, drop us off in front so we don't have to deal with the dreaded parking structure.
[24:49]Yeah.
[24:50]Can you drop a lasagna off once a month?
[24:53]Can you take my car to, can you fill it up with gas?
[24:56]I mean, there's so many things and there's so many things that we do.
[25:00]ourselves that we really need to learn how to delegate and someone might not do it as well as
[25:07]you would, but we really have to let go of perfection because dementia is a really messy disease.
[25:13]Yeah. Speaking of messy, let's talk about guilt because that's sort of part of caregiver
[25:21]stress and it's, and I wonder if it ever really goes away or you just learn to, I think you
[25:28]learned to walk with it. I don't think it ever goes away. You know, I'm always feeling guilty
[25:32]about not doing enough or I should have done this. Did I, you know, I was even going out and having a
[25:36]good time. Yeah, that was really, yeah. That was very hard for me. Yeah. And like, I don't deserve to
[25:43]laugh or I don't deserve to go out and have fun. Well, that's why I loved your book because you talk
[25:48]about this so well and floating in the deep end because and I think that was one of my first
[25:53]realizations of like, oh, yeah, you know, me having fun isn't going to change versus
[26:00]right disease. Like what do you, you said something in your book? Well, I think I think what you might
[26:06]be referring to is I said that it's like, it's almost like we, we feel like we gave them that. So I,
[26:12]so I can't go out and have fun because you have this disease. If you think about that logically,
[26:17]it makes absolutely no sense. You didn't do it. I mean, something bad happened and fate
[26:26]struck, you know, your loved one, but you didn't do it. So that doesn't mean that you can't also
[26:34]go out and have a life and go out and, you know, with your friends or smile or laugh or
[26:42]right. Yeah. And I, and I also think like early on in this journey, I never thought that I would
[26:47]have a life. I never thought that I would smile again or find joy in my life. No one ever told me
[26:52]that. You know, I wasn't told that. So I just felt like it was going to be this one note of sadness
[26:58]and grief and darkness. And I could have never imagined that, you know, one day I would be here
[27:06]talking and being able to smile and laugh again. And Bruce would want that. I feel like our
[27:13]people would want that. If he knew that I was just continually upset and sad, like he wouldn't want
[27:20]me to be raising our daughters in that kind of atmosphere and mood. So I learned how to balance it.
[27:29]I don't think I'll ever be completely like I don't think guilt will ever fully. Yeah, I don't
[27:35]think it ever goes away. My, my method for dealing with it was I sort of envisioned guilt as this
[27:41]muscle. And like any muscle, it has to flex itself and thank God we have it because if we do
[27:49]something bad, we need to feel guilty. And so, you know, my sort of trick was to go,
[27:56]okay, thank you for sharing guilt. But you don't need to flex yourself right now. I don't need
[28:03]you right now. I'll let you know when I do, but I don't need you right now. You know, it's sort of
[28:08]because otherwise I think you end up feeling guilty for feeling guilty. Yeah, right? Like I'm
[28:14]feeling guilty. I shouldn't feel like that. It's like you've piled on. And I feel like that just
[28:18]gets in the way of care. Right? Like if we're feeling guilty, then we're not like, you know,
[28:23]assessing the room properly. You know, you're just living in guilt and we need to push that aside.
[28:29]And I had learned that from Deepa Snow, who's a dementia care specialist. Yeah, I want to
[28:34]tell us about her. Yeah. And, you know, she's, there's just sometimes we just have to like,
[28:40]push it to the side. Yeah. Yeah, I wanted to ask you about her. She's the one who came up with the
[28:45]phrase care partner. She's the one. Yeah. She's the one who. Yeah. Care partner in services.
[28:52]Caregiving. I mean, there's all different terms, right? I think you just use whatever feels
[28:56]well for you. And I thought it was really interesting. I really like care partner because it kept me
[29:00]I wanted to partner with my husband in this disease caregiving just felt like it was
[29:07]just separating us in a way. And I felt like that I like the partnership of it. So I feel like I'm a
[29:12]care partner. Some people say caretaker, which reminds me of a gardener. Yeah. Yeah.
[29:20]Yeah. But I think you use whatever, whatever works. But Deepa Snow is an occupational therapist,
[29:26]a dementia care specialist. And when, you know, we finally
[29:32]got the diagnosis and we came out with our family statement about Bruce and his disease. And I was
[29:38]like, now I can finally put the right support in place. Now I can finally call the experts in the
[29:42]specialist that I that I need to really help teach me and support, you know, our family and my
[29:49]husband. And Deepa Snow was the first person that I spoke to. And she was just incredible. Just,
[29:55]you know, really helped me fine tune my caregiving skills. And
[30:00]and teach me things that I would have never,
[30:02]I've known.
[30:03]Well, there were things that when I read that chat,
[30:06]some of the things about her,
[30:09]I mean, I want you to talk about some of the specific things,
[30:12]like not wearing black and not standing for,
[30:16]I mean, I felt terrible when I read that
[30:18]because I thought I weren't black all the time.
[30:20]I know I were black or my father all the time.
[30:22]So what it is not known is that you,
[30:24]how would you know?
[30:25]You would not tell someone,
[30:26]I told you.
[30:27]And people was the one.
[30:28]So what she says is don't wear black
[30:30]when you are with someone who has dementia,
[30:32]because it looks like you're just a floating head.
[30:36]They don't see, they don't see the color.
[30:40]So it just looks like a floating head.
[30:42]Remove any black doormats from the front of your door
[30:46]because it looks like a black hole.
[30:49]When you are speaking to someone with dementia,
[30:52]don't stand straight onto them.
[30:55]Angle your body with your shoulder pointing to them.
[30:59]So you're sort of speaking to them
[31:01]like sort of at your side
[31:03]because being front on feels very confrontational.
[31:09]Yeah, but this was the brilliance of TIPA
[31:13]and just her education and teaching caregivers,
[31:18]caring for caregivers so that they can make this journey
[31:21]a little lighter.
[31:25]I visited an Alzheimer's facility
[31:28]once early on in my father's illness.
[31:30]I was doing a lecture, some city
[31:32]and they had just opened this facility.
[31:35]And you might know this too.
[31:38]They told me that, well, they showed me like some of the rooms
[31:41]and then there was carpeting,
[31:44]the rooms were all carpeted, but so were the hallways.
[31:47]And they said that,
[31:50]I don't know if it's for every kind of dementia,
[31:51]but certainly with Alzheimer's,
[31:53]someone gets scared going from carpet to hard floor.
[31:58]I think because of the reflection,
[32:00]they feel like they're gonna fall in and drown
[32:04]or something like that.
[32:05]But what I thought was fascinating was they didn't,
[32:07]they didn't learn that from doctors,
[32:09]they learned it from caregivers.
[32:12]Caregivers told them that.
[32:13]Yeah.
[32:14]So they hadn't seen the carpeted.
[32:17]And yeah, we know we can see what's happening
[32:19]and being able to relay that back to a doctor
[32:23]or someone, and yeah, absolutely.
[32:25]Yeah.
[32:28]How many people in here are caring for someone with dementia?
[32:34]Okay.
[32:35]Any caregivers like overall?
[32:39]No, just wondering.
[32:40]I was just wondering.
[32:41]Well, I'm so happy that you guys are here
[32:42]just to educate yourself.
[32:43]I think it's great because I think this idea of care
[32:46]is also really important that, you know,
[32:49]we will at some point in our lives care for someone
[32:52]or we might need care ourselves.
[32:55]And I think that we need to get comfortable
[32:58]around talking about you know,
[33:01]and I didn't really know about caregiving prior
[33:04]to being thrusted into that role.
[33:08]And now that I have that knowledge and understanding,
[33:11]you know, I've really designed like a very,
[33:15]like very instructive sort of form, I guess, for my kids.
[33:21]So that, you know, when the time comes,
[33:23]that they'll know my wishes and wants.
[33:26]So it just takes the burden and guessing off of them.
[33:31]So I think it's really important,
[33:33]the conversation of care.
[33:35]I was gonna ask you something about your daughters.
[33:38]They were, I have eight and 10
[33:40]when he was diagnosed, right?
[33:42]Yeah.
[33:44]So there was an evolution to this, you know,
[33:47]when there's an evolution to this in their lives.
[33:51]And there are so many moments going, you know,
[33:55]going forward as they get older,
[33:57]that Bruce won't be there for,
[33:59]I want, is there any roadmap for, you know,
[34:02]I know you wrote about how you spoke to them,
[34:07]how you explained it to them at the beginning.
[34:10]But I don't know, do you think about like when, you know,
[34:14]as they get older and maybe there's no roadmap.
[34:17]I don't know.
[34:18]I don't know what that roadmap is.
[34:20]You know, what I know is that children are really resilient
[34:22]and I used to hate when people would tell me that
[34:24]because I'm like, you know, you don't understand
[34:25]what our situation's like.
[34:26]You don't know what this looks like.
[34:29]But I have to say that they are resilient.
[34:34]But that's also, that's also learned.
[34:36]You know, we can teach our children that too.
[34:39]And I think that they are seeing
[34:42]how we show up for their dad.
[34:45]And I think that is, you know, they're better for it.
[34:50]And no, I don't know that there is a roadmap.
[34:53]But, you know, what I've always told them
[34:55]that they can always come and ask me any questions
[34:58]and what I always say to them is.
[35:00]If anything changes, I'm going to let you know so that they know that I'm, you know, I'm not trying to keep anything from them.
[35:07]And we think we, you know, we want to protect our kids. We want to lie to them. We don't want to tell them the, the whole truth, or, you know, or the truth.
[35:15]But that's not the right. That's not the way it's not, it's not right. You know, it's important to be upfront and honest.
[35:25]But for their age range, right, you would speak to someone, right, eight and ten different than you would. That's kind of what that's what I was asking about. So, yeah, because there can be markers in their lives and events in their lives where they're going to have friends whose fathers are there.
[35:39]And Bruce won't be and that's a whole different conversation in it.
[35:46]I mean, I think because he was diagnosed when, you know, now they're 13 and 11. And, you know, they are used to the fact that their dad's not able to show up at parent teacher or at a recital or graduation, you know, and yes, that's hard for them.
[36:06]But it's also, it's also okay. And I always think as hard and terrible as a situation is it could have always been so much worse.
[36:17]Because again, they're seeing how we show up for their dad. Yeah. And not just me. It's our, it's our family. It's his brothers, sisters, mother, you know, our extended family, our friends.
[36:31]And that is so beautiful. You know, no one's shying away from it. Yeah. They are really leaning into him and showing up for him and they get to see that. And I think that's stunning.
[36:43]Yeah.
[36:45]How are we doing on the time? Okay.
[36:48]You read our questions. No, I'm not quite, but I mean, are we close to an hour or.
[36:55]Okay. Cool.
[37:00]I just lost my train of thought.
[37:07]No, I was thinking about your daughters and then my brain went to something else. I know what it was.
[37:16]Um, kind of getting back to, um, getting outside help and, and making that adjustment.
[37:26]I kind of have this theory that part of the resistance to getting outside help is that you know and stay no harm going.
[37:35]I know.
[37:36]You know, the person knows instinctively that if I have more time grief is going to move in.
[37:43]Yeah.
[37:44]Because you can keep yourself so busy caring for that person that you can't grieve. You know, you don't have time to grieve.
[37:50]No. Right. So you're keeping it at arm's length and and you're having all those other feelings of anger and resentment.
[37:58]Right.
[37:59]You know,
[38:00]I mean,
[38:01]I mean, we don't like to grieve. It hurts. You know, and it's scary because you kind of feel like you're swimming in a river and you don't know if you're going to drown.
[38:10]You don't know if you'll get to the other side. But you know, I've always said to people that we try to like push grief away and and sort of send it out to the South 40 and think it'll just dissipate there.
[38:22]And it doesn't work like that.
[38:23]It will wait for you and it will come find you. Yeah.
[38:26]And if it has to come find you, it'll drive you to your knees until you.
[38:31]acknowledge it. And so I've I've always thought that because I've heard so many stories about no, I can do everything myself and I have to do everything myself and it's not.
[38:41]It's not a financial thing like people can afford to get other help, but they don't want to.
[38:46]And I've always thought that part of it is I know if I have breathing room. I know what's going to fall apart.
[38:54]I think that is why it took me a while. I mean, I have to hear from someone my neurologist to say like you really need to get help now.
[39:03]And what's interesting about that is that when I did bring informal caregiving.
[39:09]I then switched over to advocacy right like and I and I have kept myself so busy with writing a book with getting out on the road like, you know, doing so many things running a company to try and push down the level of grief because I carry the grief with me every single day.
[39:34]And that grief is always with me. I carry it with me all the time, but I also have learned how to balance it and walk alongside of it and be able to grieve, but also like have moments of joy, but you know, I've been working on this with my therapist of like, yeah, I'm doing a lot, but I do a lot to stop.
[39:56]I mean, say you don't have joy. I mean, I think, you know, it's I just.
[40:00]that like going back to like your first point of wanting to stay so busy. And I think that's a
[40:05]protection for me because if I stop anytime I stop and if I just like even just take a moment to
[40:12]look at the sunset or just something beautiful, I'll just start crying. Yeah. I'll go there.
[40:18]Yeah. And that's okay. You know, we have to like we have to have those moments. We have to
[40:24]feel them as well. It's really important to feel the grief. But it's also it's okay to protect
[40:29]ourselves too to keep ourselves busy. I mean, I feel like I'm keeping myself busy. At least I'm
[40:34]doing like I think something that feels purposeful. You know, I'm not like resorting to drugs and
[40:39]alcohol. You know, right. That would be bad. Well, and also the busyness of what you're doing is
[40:45]giving back to other people. Yeah. And you're talking about your grief and you're talking about
[40:50]what you've been through. So I think that's yeah, I think that's part of the process. Yeah. I mean,
[40:57]the first the first time I ever really had a lesson in grief was long before my father had all
[41:02]summers and I met a woman. When I lived back east, I met a woman whose husband had had cancer
[41:08]and she was his sole caregiver. She could easily have hired other people, but she was his sole
[41:15]caregiver and exhausted herself and he died. And right after he died, she got agrophobia. She could not
[41:24]leave her house. And she was wise enough to know what it was. She said to him, I mean, she didn't
[41:30]have it when I met her because she was out. But she said, I knew what it was. She said, I hadn't allowed
[41:36]myself to grieve. And so she was incapable of leaving her house. She had to sit there and grieve. And that's
[41:46]what I meant when I said earlier that if it has to come find you, it's going to drive you to your
[41:50]knees until you go through it. And it's not like you grieve. And then, okay, you're done. You know,
[41:57]it's like, I do think of it as like crossing a river. And there are some deep currents and they
[42:05]will kind of pull you under, but then you'll be okay and you'll swim. And you will get to the
[42:09]other side. And when you get to the other side, you're a different person. Yeah. It's so true.
[42:15]I mean, this is as painful as dementia is. I think there is it's such a learning ground, don't you
[42:22]think? Yeah. I think that it has changed me at a cellular level for the better. You know, definitely
[42:31]more compassionate, more patient. It's really, it's changed me in an incredibly tremendous
[42:41]way, which, you know, how hard to be grateful for something like this. But I think it's,
[42:50]I guess it could have always been worse. Well, I think it's the willingness to learn from it.
[42:57]Like this really bad thing happened, but how can I grow in this? How can I learn from this?
[43:04]Yeah. And to learn how can I help other people and help other people. And to learn to accept
[43:11]what is, you know, decide to accept instead of sitting in something of like denial or, you know,
[43:18]not wanting to, you know, just just trying to move out of that, just learning to accept and
[43:26]and walk along with it. Yeah. I think, you know, Patty is one of the experts in my book.
[43:34]Yeah. I mean, it's ever called me an expert before and anything.
[43:38]You really are. You're so knowledgeable. And I'm so lucky that you're one of my friends.
[43:43]Oh, and you've done so much within the space and before community. And I just want to say,
[43:48]thank you. I mean, floating in the deep end was probably my first book that I read about
[43:53]caregiving and Alzheimer's and dementia. And I just found it like so inspiring because,
[43:58]as you can see, like Patty is no BS. Like she tells it like it is. And I really needed that.
[44:05]You know, I needed someone. I needed those words of someone who could be very direct with me
[44:11]about, you know, caregiving is bad for your health and all the things that you mentioned
[44:15]in that book were so helpful and beneficial. And I'm so grateful that you were able to come into
[44:21]mind and be able to share your insight in your wisdom. So thank you. Thank you so much.
[44:27]Well, I learned a lot from your book too. Thank you. I love writing it. And I think that that's
[44:33]all, you know, that's, that's the best we can do. Like I said, with, with an experience like this,
[44:38]pretty with any experience. When I started, when I started doing lectures early in my father's
[44:47]illness and I was just sort of figuring out some things and no one was talking about it in those
[44:55]years. So then I was going out and doing lectures and I was going, I have no idea.
[45:00]I was gonna go over, right?
[45:02]Cause I was talking about stuff
[45:03]that no one else was talking about.
[45:05]And so I thought, okay, well, I don't know,
[45:07]people throw things at me or whatever,
[45:09]but it worked out, it worked out, okay.
[45:14]But, you know, I had to do one lecture right after 9-11.
[45:21]These things are scheduled like months in advance, you know?
[45:24]And so it was scheduled for really like a few days
[45:27]after 9-11.
[45:28]I mean, planes had just started flying.
[45:30]I was kind of praying they wouldn't start flying
[45:32]cause I didn't want to go.
[45:35]And then I thought, oh, oh.
[45:37]And then I thought, I don't know what to say.
[45:42]I mean, I'm there talking about all timers,
[45:46]but this thing has happened.
[45:47]And anyway, one of the things I said was
[45:51]that it's really common in a disease like this
[45:55]to say, you know, why am I loved one?
[45:57]Why did this, why did this happen to Bruce?
[45:59]Why did this happen to my father?
[46:00]Why, you know, they're really terrible,
[46:03]why didn't they have an a Stephen Miller?
[46:05]Why didn't, sorry, I hope I didn't offend anybody in here.
[46:10]Just like some bad person, or your bad neighbor
[46:12]or somebody, like nobody gets mad at me
[46:15]for saying that, but, you know,
[46:17]why didn't they have somebody else?
[46:19]And I said, but, you know, it's the wrong question.
[46:23]I think a better question is,
[46:25]what can I learn from this?
[46:26]How can I grow through this, right?
[46:29]What can I do with this experience
[46:32]to help other people?
[46:35]So I think that's like why the two of us are here
[46:38]and why we're writing stuff and why we're talking to people.
[46:41]Yeah, and to just remove this like, you know,
[46:44]the stigma that is so around dementia.
[46:47]I think that it's really important to talk
[46:49]about dementia and caregiving.
[46:52]I think that the stigma is about dementia is terrible
[46:55]because I think then if we're portraying it
[46:58]in such a negative way, and yes, of course,
[47:00]it's dementia is terrible, but it's not all terrible,
[47:03]you know, and I think that when it's portrayed
[47:06]in this way of being so bad and we talk about it
[47:09]in hushed tones and we don't talk about it,
[47:11]then the person with the disease doesn't get the best care
[47:14]and nor does the caregiver.
[47:16]So I felt like it was really important for us
[47:19]as for our family to be able to,
[47:20]and I didn't want my kids to ever think they had to talk
[47:23]about their father's disease and a hushed tone.
[47:25]I was like, no, we're not gonna do that.
[47:27]We're gonna go out and we're gonna be loud about it
[47:29]and what they're gonna see is this reach that he has,
[47:33]that you know, not just in America, but globally
[47:36]and that, you know, things might shift
[47:39]and we're not gonna, we're gonna come out
[47:41]and talk be big and bold about it
[47:45]to just really shift that narrative.
[47:47]Yeah.
[47:48]Well done there.
[47:49]Thank you.
[47:50]Thank you.
[47:51]Well, thank you everybody.
[47:52]Thank you.
[47:53]Thank you very much.
[47:53]Thank you.
[47:54]Thank you.
[47:55]Thank you.
[47:56]Thank you both, both of you for being here
[48:00]and sharing such a personal story,
[48:03]but I think providing some really beautiful insight
[48:06]that I think everyone's very grateful for.
[48:07]Thank you.
[48:08]And they can both, they both have both their books here
[48:12]that they're both happy to sign.
[48:14]And, yeah, please.
[48:16]Can mingle in?
[48:17]I love it.
[48:18]So it's come great.
[48:19]Thank you all for coming.
[48:20]Yeah.
[48:21]Yes, thank you again.
[48:22]Thank you.
[48:23]Thank you.
[48:24]Thank you.
[48:24]Thank you.