After The Dementia Diagnosis-Interview with Grace Walfall

Welcome To Patty’s Place

SPEAKER_02
0:08

Welcome to Patty's Place, a place where we're going to talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. I'm your host, Lisa, and I wanted this place to be where you can know that you're not alone and talk about some of these difficult conversations. So grab yourself a cup of coffee, a cup of tea, or if you're having a really bad day in a glass of wine, and let's come join us today. Today I'm excited. Our guest today is Grace Walfall. She is a foundation of Living with Change, Dementia Consultants. She's a certified dementia practitioner, certified dementia champion, and dementia educator with TIPA show's Positive Approach to Change. You're also an author of Preparing with Clarity: Next Steps After Dementia Diagnosis. And that's the first book in the series as well. So welcome to Patty's Place.

SPEAKER_00
1:01

Thank you. I am excited to be here.

SPEAKER_02
1:04

So I thought we'll get started a

Why Diagnosis Leaves Families Lost

SPEAKER_02
1:07

little bit here. So what do you see happening to families after dementia diagnosis that led you to create living with change?

SPEAKER_00
1:17

Okay. Well, before I even answer that question, one of the things I want to say, because I focus on the person living with dementia, there are a lot of organizations that focus on the care partner, and that's extremely important. But if there's someone who's listening today and you're living with dementia, especially if your diagnosis is recent, I want them to know that this conversation includes them. It's not around them. And if a family member, a care partner, a supporter, or even a provider is listening, I hope that this conversation will help them to prepare alongside the person living with dementia and not around them. So I wanted to share that. But to answer your question, what I kept seeing was that people living with dementia and the people who support them, they were leaving a diagnosis appointment with medical information, but with limited direction. I facilitate a group of men living with dementia through the National Council of Dementia Minds. And more than once I heard the same story. They had received the diagnosis, they had been told to get their affairs in order. Then they were sent home with a follow-up appointment months later, six months, 12 months, sometimes even 18 months. And I kept thinking about the person who had just received that diagnosis, especially as I was facilitating the group of men living with dementia, and they would say that. What do they want to, who do who do they want to be involved, what may need attention now, and what can we? Well, I was attending several conventions and I was at a Georgia Gerontology Society conference, and I heard a certified elder law attorney explain legal and health matters in a way that I realized the men could use, but I also realized the missing piece that people do not only need more information because there is a lot, they need sequence, they need structure, and they need a place to begin. And so that became the foundation of living with change. The work actually grew out of listening to people live with dementia and paying attention to what they said they were not receiving, but what they needed, because nobody really should leave a diagnosis appointment with nowhere to turn to guide them on getting their affairs in order.

SPEAKER_02
4:12

And I I love what you said about the person living with dementia to include them in the diagnosis, because in my mom's particular case, she wouldn't get diagnosed. I tried and she wouldn't. So by the time she was diagnosed, it she was already in like, as they call moderate to severe uh dementia, which you know, she couldn't make those decisions for herself. But it was still important in many ways to learn to learn as the caregiver how to include them and make sure you're doing what is what's in their best interest for them and to give them dignity with it, you know. And it's really hard. I I find a lot of because it is it's a difficult diagnosis for the caregiver, but it's a difficult diagnosis for somebody who, you know, as you said, you're dealing with the people who are uh helping the people who are living with dementia. It's a hard diagnosis for them to to digest as well. Yes, you know, and even as the caregiver, you're here, you have to do this, this, and this, put them in memory care. And you're like, uh, what does that mean? You know?

SPEAKER_00
5:20

Yeah. What does that mean? And what what type of memory care would they like to be in? And so you want to get that information while they can still contribute to the conversation. And some families that I have worked with, they've actually visited different um memory care um communities and decided together where they would like to go when the time comes and they need that level of support.

SPEAKER_02
5:51

And that it's wonderful when families can come together to do that for the um their loved one, because it doesn't always happen that way as well.

Medical Info Vs Real Life

SPEAKER_02
6:01

So, why do you think so many families feel lost after a dementia diagnosis, even when they've received good medical uh advice information?

SPEAKER_00
6:11

Yeah, so good medical information matters. I come from healthcare, okay, um, and I respect it highly. So if you're living with dementia, you deserve to understand your diagnosis. Um, if possible, the type of dementia, what your healthcare provider is seeing maybe on the scans, and what follow-up is recommended. But medical information usually answers one part of the question, right? It helps explain what may be happening in your brain. What it often does not answer is what does daily life look like now? I mean, what does the next morning look like? Who do you want to be involved? Who do you tell and why do you tell them? How do you even begin that conversation with family, friends, and if you're still working your employer? What information should be gathered so that you can get your affairs in order? Those practical questions actually belong to the person living with dementia and also to the people supporting them. And that's why people can leave an excellent medical appointment and still feel lost. They may have the information, but they don't have a practical path. And so preparedness gives that information an order. It tells them what matters now, what comes next, what can wait, what everything, when when everything doesn't feel urgent, the person living with dementia, the people supporting them, they can slow down, they can take a breath, and then they can begin.

SPEAKER_02
7:58

And I like how you said that, yeah, you could take a breath and digest all the information. And too, a lot of people don't realize there's different types of dementia. You know, not everything is Alzheimer's with it. You know, and to understand that even though they share a lot of common symptoms and things like that, different things, different dementias have different different symptoms, different outcomes, different, you know, different things you need to look for, or you're gonna have to deal with later on with it.

SPEAKER_00
8:27

You know, I think you make a very important point. The same way when someone receives a diagnosis of cancer, we ask, what type of cancer immediately, right? Where is it? The same thing with dementia. And it is more difficult to pinpoint in the early stages, but still in communication with your provider, your neurologist, that should be your question.

Why The Dementia Type Matters

SPEAKER_00
8:54

Have you identified the cause of my dementia? Is it Alzheimer's? Is it prefrontal temporal? Is it vascular dementia? Is it Lewy body dementia? Because as you were saying, it affects different parts of the brain, and different parts of the brain control different parts of who we are, right? And so to know that it may be affecting your left temporal means that you may have challenges with language, with language comprehension, with language um production, or even with word finding. So it's always good to, if when possible, to get a diagnosis of what type of dementia, and also people will end up having mixed dementia. And so they may have Alzheimer's and vascular. And so now you need to understand both and how they come together, and what you can expect in terms of what changes may occur.

SPEAKER_02
10:04

Yeah, I think, yes, that is excellent for people to understand because it's such a huge umbrella, and you feel very overwhelmed with it. So your book is called Preparing with Clarity.

Preparing With Clarity Explained

SPEAKER_02
10:17

So, what does uh preparing with clarity actually mean for a family when they just heard the word dementia?

SPEAKER_00
10:23

Yeah, the word dementia. So for me, preparing with clarity means helping the person who has been diagnosed together with the people they trust to understand what deserves attention without trying to do everything at once. You know, if a person just heard the word dementia, that emotional weight is heavy. Um they they can, and everybody's different. So some people may be frightened, some may become very quiet, some may be confused, or based on their personality, they may try to start solving 10 things at the same time. Everyone's experience is different, right? Um, we all know the same when you've met one person with dementia, you've met one person with dementia.

SPEAKER_02
11:12

Yes, exactly.

SPEAKER_00
11:14

This, yeah, this book is written for the person living with dementia in mind. I wrote it for them. And it gives them a practical order, right? It helps them to think about what they want to understand now. What information should be in a dependable place? What should be part of their care team, or who should be part of their care team and their support network, and what preferences or decisions they want to communicate now while they have that ability. So, care partners and supporters, they're very important part of the process. And with this book, this allows them to walk alongside their loved one with support and structure. Because the book, in addition to providing information, it actually gives them worksheets that they can complete together or independently so that they can begin their preparedness journey immediately. And I also did that because coming from healthcare and coming from leadership and management, I understand the power of quick wins. And I wanted them to have quick wins. So to encourage them and to empower them that this is doable, and just start right here and do it at your own pace and do it by yourself, or you can do it with someone that you trust. Because preparing with clarity, it's not about having every answer. It is about having enough structure so that they can take the next step with confidence. The book, it's designed for life after diagnosis, um, but it can probably serve quite a few people. But it's it's for life after the diagnosis and especially the early period from it could be from MCI, mild cognitive impairment, or a dementia diagnosis early to mid-stage, when that thoughtful preparation can make a real difference in how their life um progresses. So a diagnosis, it really does change what is ahead.

SPEAKER_02
13:33

It really does, yeah.

SPEAKER_00
13:35

But it doesn't get to decide how the family needs it.

SPEAKER_02
13:39

And I think that's wonderful because you know, the person living with dementia a lot of times gets lost with with all of it. They do, they they really do. And it it it's hard to get to that point to as a caregiver to be able to be like, wait a minute, you know, like I've said many times with my mom, I there was nothing I could do. I, you know, there's no cure, I can't fix her or whatever, but I could at least give her peace. And so I tried to do that, you know. And the one thing I have said before too is people living with dementia, they really do teach you to live in that moment, especially as the diagnosis progresses, because that's all they know is that moment.

SPEAKER_00
14:22

Yes, it and that's one of the few things it's teaches us. I have learned so much since facilitating that group in terms of patience, you know, in terms and and patients with waiting until they gather their thoughts to answer a question and not asking, did you hear me? Yeah, but under yeah, but understanding it's going to take more time for them to gather their thoughts. It's also taught me how to be more understanding and compassionate, but also how to be more grateful in life. The things we you I used to take for granted. Um, the simple things I no longer take for that granted. I give thanks that I'm still able to do that. And I give as much support to those who can in that moment, like you were saying, moment to moment. Dementia is not day by day. No, dementia is definitely moment by moment, second by second.

SPEAKER_02
15:23

And it is um, it's a learning curve not only for the person living with dementia, but for the caregiver to get to that point with it, because there's so many emotions

Three First Steps After Diagnosis

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15:32

attached to it. So, what do you think are the what are the first three things a family should do in the weeks after a diagnosis?

SPEAKER_00
15:40

So, like we discussed previously, first, if they can, understand the specific diagnosis. Because as you mentioned, dementia, it's an umbrella term, right? There are the many types of causes that end up causing a diagnosis of dementia. And they should ask their health care provider to explain the type of dementia that has been diagnosed. They should ask their health care provider, you know, what changes are they seeing if they're doing scans, and what can be expected because of what they're seeing, as well as what follow-up or support they recommend, like which specialists do you recommend a speech therapist? Do you recommend a physical therapist, occupational therapist? What do they recommend? Because understanding their diagnosis, it gives them and the people supporting them a stronger conversation for a stronger foundation for conversations that are coming up. And not just conversations with your care provider, but also conversations with your family and your friends when you're planning, once there's an understanding of the type of dementia that a person has. The second thing they should do is begin gathering important information and putting it in a dependable place. So this is for all of us, right? Right. We have information in a file somewhere, we have it in a drawer, we have it all over the place. And so to have this information, and that can be their medication, their insurance information, emergency contacts, their financial contacts, their logins to different accounts or a recent picture or updated picture. So if there's ever a need for a silver alert, that they we can provide a recent picture to help in finding them, but also what their daily routines are, so that you know, and what their care preferences are. And they don't have to do that alone, right? They can have a trusted person help them to get these documents in in a dependable place. And excuse me, in my book, I do discuss a home base, and that that's explained, but that can be very useful. So the last thing I think they should be do is to begin having honest conversations and not a lot, just conversations about what matters to them, right? It doesn't have to cover everything. Um, they could start with something very simple like what helps me feel steady, what frightens me the most about this diagnosis? Who do I trust to help with the decisions who won't be too emotional? Um, what do I want the people around me to remember as the disease pre-progresses? Because having that conversation, it not only benefits, but it benefits the person living with dementia because it gives them that space to speak their truth. And sometimes the truths, their hard truths. And it also benefits the trusted person because now they're more aware. They're aware of what that person is living with, what that person is feeling, experiences, as well as what their desires are. So it's very important to share for me to share at this point because I'm giving a lot of information that in my book, in my um educational series, I don't give legal, financial, or any clinical advice. I just help people understand what questions they should ask and how to prepare to work well with the qualified professionals that they will need. So just some small steps, those three small steps in the right order, they're better to have them now than to have to address them under pressure or in a crisis.

SPEAKER_02
19:49

Oh, I agree. Because when you've, you know, if you don't have that ahead of time, which you know, I didn't. And and and my mom got diagnosed during COVID. So that was a whole nother wow. And so um you do, you feel very overwhelmed and you don't know where to start uh with things. You mentioned

Home Base System For Key Documents

SPEAKER_02
20:06

a home base. So what is a home base and why does that make daily life and decisions, why does it make that easier for families?

SPEAKER_00
20:14

So if you're living with dementia, there's something deeply assuring about knowing where important information lives, right? And they shouldn't have to rely on memory, neither should the people who are supporting them. So a home base is a dependable place. It can be paper, I'm paper, I like paper. Um it can be digital or it can be a combination of both, right? Because if your care partner is a distant care partner, maybe it's a child who lives in another state, you can put certain papers on digital, like their advanced directives, uh do not resuscitate the HIPAA authorization, so that if the person has to be admitted into a hospital and they don't take that information with them, the critical information that will guide how the person receives care, someone who's living in another state can go online, get that information. If they've been given authority to like a my chart, they can upload it or they can have that conversation. So, you know, also not to digress, but one of the things that is important is that people um need to realize that they do need a power of attorney, a healthcare power of attorney. But in addition to that, they also need a HIPAA authorization because that allows a person to have access to medical information. Without it, by law, it cannot be changed. So, to answer your question, the home base that's where important information lives, right? Digital or both, and it's the place where people know to look first. So, for example, if there's a doctor's visit, one person thinks the medication list is in the drawer, someone else has the insurance card, another person remembers that the medication was changed, they don't remember what it was changed to, who changed it, or why it was changed. That kind of searching can make an already emotional appointment even harder. So with the home base, you have either a stationary file cabinet, a portable file cabinet, digital or a combination. And in that you have your medication list, your provider information, your insurance details. All of these are kept in a place that is dependable so that you and your trust one can find it when it's needed instead of having to search. So the goal is to reduce the searching so the person living with dementia can preserve their energy, right? And those who support them, they can use their energy for the person, for the conversations, for the decisions, for the life that is actually happening instead of looking for documents. So a home base, it doesn't, it doesn't need to be fancy. I like things simple and it doesn't need to be perfect because you can build it over time. It needs to be dependable. And in the book, I give them different documents, um, not the actual documents, but the name of them and the different folders that they should have in a home base so that if someone comes in and needs to EMT comes in and they want to know what medication, your trusted one can just go to that file cabinet, pull out the folder that says medication, and said this this is the updated one. They had an adverse reaction to this one. Do not prescribe this, do not administer this. It's about having everything in a place where in the time of need, you know exactly where it is.

SPEAKER_02
24:12

And that's a good, I didn't realize uh with the HIPAA, uh, because both my parents had the power of attorney uh we had, but I I had to get on my mom's um medical records, and that's probably what I had to fill out was that, but that's a good one to have to to remember because again, you deal with, oh, I they can't give you the information, and you're like, but I'm the power of attorney, but you have to have you have to fill that out, which I understand you're you're trying to respect that person, but as with somebody with dementia, you you need to know what's going on because they may not depending on what stage they're in, they may not understand what's going on.

SPEAKER_00
24:50

That's correct, that's

HIPAA Access And Care Authority

SPEAKER_00
24:52

correct. And additionally, in addition to the home base, the home base is actually it's one of the ideas that I carry into what I am now developing, which is the prepare to thrive toolkit. Um, because knowing where to begin and knowing how to find your way back to that information, as you were mentioning, as memory and cognition changes, they may have challenges. So I thought of creating and then developing the prepare to thrive toolkit, and it's designed to support a person with cognitive change. You know, what makes it different is that it's designed about around the reality that as cognition changes, it can become more difficult, it can become harder for them to remember where the information is, what they were working on, or what comes next. So instead of just giving people another binder full of information, the toolkit it helps guide them one step at a time. So I'm looking forward to launching that so that people can have structure and tools to really support them through the journey.

SPEAKER_02
26:08

And I think that that's wonderful. And uh, like with my mom, well, granted, her hers dementia had progressed by the time we got a diagnosed. But like sometimes I had to be that person because she would get upset at the doctor's office or she was in the emergency room and things like that. And I actually had to spend the time to try to calm her down and talk her down with it. So, yeah, to be able to have that information and know where that is, to be able to give it to the healthcare provider because they didn't know what to do with her because she got so upset and she was ranting and raving at one point, saying, you know, that my dad was sending her this way and also, and he wasn't, you know. So it was like, you know, they try to calm her down with it. So that's an excellent tool for people to have, to have it all there uh with it. Uh, so you said preparing with clarity is book one in your after the dementia diagnosis series. So, what does the series, where does it go from here? What's your plan with that?

SPEAKER_00
27:07

So, preparing with clarity is my first book, and I wrote that because I thought of the toolkit first, and then I thought people aren't gonna understand why they should need a toolkit, and then the education series came up, and I said, neither are they going to know how. So, preparing with clarity, it is my first book, and it begins in the early to mid-stage period after a diagnosis, right? Because that's when people often need a place to begin. And I wanted to speak directly to the person living with dementia while also helping those who walk beside them. That early period, it matters so much because it can be a time to understand what the diagnosis may change. You know, how are they going to engage with now a care team? How to expand and strengthen their support work, support network, and also how to communicate what matters to them, such as their care as the dementia progresses. The larger book series, it's designed to meet people as needs change. So, in the other series, I'll talk about making your home safe. I'll talk about the actual legal documents that can support you, like the HIPAA authorization, right? One book, it cannot carry the whole load because dementia changes over time. And what you need in early to mid-stage, it may be different from what you need when daily support increases or when decisions become more complex. So the principle throughout the series will be the same. I will not overwhelm people with everything at once. I am grounded in now, next, and later. And the books they're written to meet them where they are, and with flexibility so that it supports their personal priorities, because I don't want to say do this first. They each chapter they can use it if they think strengthening their support network is more important than building their care team, then go there first. And so they can choose what they want throughout the series, and the book just gives them direction for what to do as in the future.

SPEAKER_02
29:28

Well,

Toolkits And A Book Series Roadmap

SPEAKER_02
29:29

and yeah, like thinking about like the house and things like that. My mom lived with me for about a month before as we were trying to figure out uh where she was gonna go and stuff, because she she couldn't live with my dad anymore. She was just so angry at him for so I was like, that's not gonna work, you know. So, but like I had to take all the knobs off the stove, you know, you know, with those types of things. And um, my mom actually got out of my house twice in one night. That was the scariest thing I've ever had. And I was literally right next to her, and she got out really fast. And my dad came the next day and changed the locks, you know, all those different types of things you have to think about uh with it.

Planning With The Person’s Voice

SPEAKER_02
30:08

So, how can families include the person living with dementia in planning uh while their voice and preferences can still be heard?

SPEAKER_00
30:17

So um the way that they can include is really just to start with one, excuse me, with one conversation, right? Not not not ten conversations, not the whole plan. And to really understand that they still have a voice, they still have um dignity. You want to help them to retain that dignity, and that they they still can share what is very important to you, uh important to them. So it is our position at Living with Change that our work is grounded in a dignity-centered approach, right? So for people who are living with dementia, I want them to know clearly that their diagnosis doesn't erase their voice. They still have something to say about what matters to them and how they want to be supported. So they can include them because this is the time that they get to answer those questions in their own words, they get to let others know what helps them feel safe, what values they want to have throughout this, what changes they are seeing, what do you hope people around you will know as the life changes, your wishes? So for families and care partners, the shift is really from planning for someone to planning with them. They I call this a superpower, and the superpower is listening, right? To really listen, to write down the preferences we think we'll remember, but many times there's so much going on in that life that they don't remember. So to write them down, not only so that they know, but when they go to their appointments, they'll have this information to share with their provider. Um, a person can pay attention to the routines, the values, what their spiritual practices are, something as simple as what music they like, you know, what is comforting, what makes them feel respected. Because a person with dementia, they are in the moment doing the very best they can. And as they change, we too have to change, right? So the goal is never to take over the person's story, it really is to help to preserve it. So it is to include them. And in my volunteer work with people living with dementia, I meet with them weekly. It's a group of men across the country, and one person is actually in Germany. But I'm reminded every week that they want to be included, they want to be heard, they want their lives discussed with them and not around them. So the person with the diagnosis should be the first voice in the plan and not the subject of it.

SPEAKER_02
33:29

I would agree with that. I I totally agree with that. And I also think, too, as the person with dementia, you know, their diagnosis as a caregiver, you are also well, you should be anyway. It forces you to have to look at yourself as well, too. Yes, you know, and grow, like you just said, grow with it. And that's hard. That's really hard because like my mom didn't know who I was. Yes, you know, she thought I was just this really nice girl that came to visit her, you know. And and it it is hard to accept that, but yet they're still in there and to just kind of go along with them, you know, when you're with them in that moment uh for it, and then you when you leave or you have a moment, then you can cry and be upset that you know your mom doesn't know who you are, you know, type of a thing.

SPEAKER_00
34:21

But it is we call that living in their

Don’t Correct Connect Instead

SPEAKER_00
34:24

reality, right? If they if you come in and they think you're her their sister, you know, your mom may have thought you were her sister. What she didn't remember is that your presence made her feel good, and so she's receiving you, but to live in their reality is like when they you don't want to go, I'm not your sister, I'm your daughter, right? Because that's not their reality, and you don't want to have them have a stressful reaction. People think they become combative and they become angry. It is a stressful reaction to a situation, and so if we walk into those conversations with the understanding that we are here to make them comfortable and to meet them where they are, whether it's 20 years ago or yesterday, that the best thing we can do for them is support them and acknowledge their feeling, give them credit for their feeling, and and then move on to something else, but not to correct. We say in positive approach, we don't correct, we connect. And so it is to connect with them.

SPEAKER_02
35:44

And it does take a while to get there, but I was so I I was very um glad I finally got there because then I did have those moments with my mom, you know. You know, she she thought she, and when she was in memory care, she thought she was in her grandma's house. And I was very grateful that I paid attention to all the stories she told me about growing up and everything, so I could just join right in with her, you know. And if she thought she was at her grandma's house, I was like, yeah, that's where we are, you know, and uh you got to have those moments. And then she wasn't as stressed. And I know that I did become one of those people that when she did get upset, if I was there, you know, she'd grab my hand and be like, Don't leave me, don't leave me. And I could try to calm her down than to try to just, you know, like you said, stress them out. And that's always the one thing I try to tell people. As hard as it is, you need to enter their world. And it just becomes a lot easier all around. For everyone, yes, yes, everyone. Yes, definitely.

Where To Get The Book

SPEAKER_02
36:43

So, where can um somebody buy your book?

SPEAKER_00
36:47

So, right now it is with Morgan Publishing Company, Jane, James Morgan, okay, and they can go in to they can go to my website right now and get on my waiting list. It is going to be published in the fall and released to retail stores in the spring, but they can begin to purchase it in the fall. So they can go and visit dementia-consultants. There's a dash in between, dementia-consultants.com, and they can um join the wait list for the Prepare to Thrive toolkit that I mentioned, and they can also stay informed about the release of my book. There's a contact page, and I will have their information and share with them when the book is ready for purchase.

SPEAKER_02
37:44

Okay. And I'll make sure that we put your website on our on our page when the when this episode airs so people can get to it and and do that. So thank you so much for joining us. Um, like I have learned a lot today. I hope I'm sure my audience has learned a lot as well too today. So I hope you have enjoyed our discussion today. So hopefully, yes, and I hope everybody has learned a lot as well. And make sure you go to the her website so that way you can get your toolkit as well. So please make sure you leave us a review. Uh, join our YouTube, subscribe to our YouTube channel as well. And hopefully you have enjoyed your cup of coffee, your cup of tea, or if you're having that really bad day, a glass of wine, and join us for another episode of Daddy's Place.