Empowering Caregivers- an Interview with Dementia Expert Tami Anastasia

In this episode of the Hope Floats podcast, Shoshawna Rainwater and Rachel Coady welcome dementia care expert Tami Anastasia. They discuss the emotional landscape of caregiving, the importance of understanding personal history in dementia care, and the challenges caregivers face, including guilt and identity loss. Tami emphasizes the need for self-compassion, setting boundaries, and the transformative potential of the caregiving journey. The conversation also touches on communication strategies with loved ones experiencing dementia and the societal stigma surrounding the condition. Ultimately, the episode highlights the hope and growth that can emerge from the caregiving experience.

 TAKEAWAYS:

• Tami Anastasia is a dementia care expert with over 30 years of experience.
• Understanding a loved one's personal history can improve caregiving strategies.
• Caregivers often struggle with guilt and self-criticism.
• Empowering caregivers to believe in themselves is crucial.
• Every person with dementia is unique, requiring tailored approaches.
• Setting boundaries is essential for caregiver well-being.
• Communication with loved ones should adapt to their cognitive changes.
• Societal stigma around dementia needs to be addressed and changed.
• Finding hope in the caregiving process is vital for emotional health.
• Caregiving can lead to personal growth and deeper connections. 

Transcript

Shoshawna Rainwater (00:04)

Welcome to Hope Floats, a podcast for people who are caring for a person with dementia. I'm Shoshawna Rainwater, clinical social worker and dementia consultant based in Portland, Oregon. I'm also the daughter of a person who's living with dementia.

Rachel Coady (00:20)

And I'm Rachel Coady, a professional certified coach, caregiver and the daughter of a person who had dementia.

Shoshawna Rainwater (00:27)

Today we're welcoming national dementia expert and author Tami Anastasia. Tami Anastasia is a dementia care expert, educator and speaker. She's the author of Essential Strategies for the Dementia Caregiver, Learning How to Pace Yourself and the book Dementia, Caregiving and Personal History: How to Help, Cope, Connect and Heal.

Tami holds a master's degree in counseling, a certificate in gerontology, and a certificate in end of life. She is also a certified senior advisor. For more than 30 years, Tami's provided counseling services, dementia guidance, emotional support, and care strategies to family and professional dementia caregivers. She also provides counseling services and emotional support to people living with dementia.

In addition to her private practice, Tami facilitates several dementia caregiver support groups and has partnered with agencies throughout California where she resides to conduct educational workshops, in-service trainings, and webinars. Tami's a sought-after speaker, frequently presenting before audiences at professional meetings, senior retirement centers, memory care and assisted living communities, health and wellness conferences, local colleges and universities, and public health organizations.

Tami's been a guest on local television, radio shows and podcasts and has published several articles on dementia and health-related topics. Tami, thank you so much for being here with us today. Welcome.

Tami Anastasia (02:03)

Thank you for having me as a guest. It's really truly a pleasure to be here and do this podcast with you. So thank you so much.

Rachel Coady (02:11)

One of the questions we love to start with when we have guests on Hope Floats is to ask about your why. So where did your journey with this work start and why did it start for you?

Tami Anastasia (02:22)

So I started my practice. So I have a private practice, counseling practice, and I started it in 1991. And I would deal with the psychology, the counseling of people who had difficulty exercising, their emotional eating, how they dealt with stress, body image and everything. My grandmother got diagnosed with dementia. Well, actually I take it back. She got diagnosed with senility. Back in the day, we did not know or ever hear the word dementia.

And so my father, I'll never forget, would come home just sobbing after seeing his mother. We were kind of protected from seeing her because she was so different, but he'd come home and describe her behavior and really quite distraught. So fast forward, I get my counseling degree, I start a wellness practice, and then I decide I want to pivot.

I didn't want to do the wellness work I was doing anymore. I wanted to do something more significant. And a colleague reached out to me and said, “do you want to do an Alzheimer's support group?” And I'm like, “yeah, absolutely.” So from there, I changed my practice to all dealing with dementia, dementia caregivers. And it just kind of went from there.

But what really drives me, I just can't forget how emotionally distraught and upset our family was not to see my grandmother or relate to my grandmother anymore the way she was–because quite honestly, probably one of the nicest, loveliest people you'd ever meet, but she had changed so much, we didn't recognize her.  We didn't have the information we have today. We didn’t have the knowledge that we have today. 

Shoshawna Rainwater (03:52)

Yeah.

Tami Anastasia (03:53)

So it's kind of my way of giving back that if I can help support families who are traveling this journey and back in the day again, remember it was senility. If there's any way I can help support and educate and give people insight and care strategies or care plans help them, then it's my way of giving back to a family that didn't have the resources that we wish we could have had. 

And I think, also, that it's so different today because there's so much more known about dementia, in some ways, but the reality is we're all human and we all have relationships and it's family. There's dynamics and it's painful to see a loved one change and understand how that brain truly is changing them–their thinking, their way of being, their ability to even do everyday things. It's really hard to wrap your head around it. Yeah, my grandmother lived with it for about 22 years, but most of her life ended up being bedridden. I mean, so you look at quality of life, right? You question that as well.

Rachel Coady (05:00)

That's exactly why this podcast exists. We both looked in the mirror and said there should be more resources. There should be more conversation. There should be more awareness of how many people are experiencing the caregiving journey. And like you said, when we both went through this journey, as we go through this journey individually, everyone is like learning their own and we're like, “no, no, no, let's connect dots and like help each other and make this work harder.” So, it's exactly what you're saying is why we want to be here. And again, so grateful that you're with us today.

Tami Anastasia (05:32)

Thank you again for having me. Yeah, you know, I think the caution is, first of all, every person with dementia is different. Every caregiver is different, but there are common themes throughout the journey. But what works for one person may not work for another. And so we also have to support the caregiver to believe in themselves more because what worked for Sally may not work for Mary but trust and, you know, build the belief in yourself, I think, in my private practice, that is my goal and my support groups, that is my goal. When I do a speaking event, don't know if I'm ever going to meet any of these people again, but to help empower them to believe more in themselves, because guilt tends to take over. It's all about what I'm doing wrong. I'm not doing enough. And you are enough. Your love is enough. Your presence and being is enough.

And caregivers spend a lot of time beating themselves up. So it's also my opportunity to build some confidence in them and to believe that mistakes are not failures. Mistakes are opportunities to learn from. And it's a learning-by-doing process. 

Rachel Coady (06:45)

Yeah, day to day, right? This disease journey is sometimes hour by hour, day to day classroom.

Tami Anastasia (06:52)

It is. Yeah, you know, I get letters and emails and cards and, very loving and, “thank you so much. This worked great” or this and that. And I say to myself, “well, it works until it doesn't work,” right? And then we gotta switch it up. 

Shoshawna Rainwater (07:06)

Yeah. Is that in part Tami because the disease or condition of dementia is progressive and so it itself is always changing. 

Tami Anastasia (07:15)

Correct.

Shoshawna Rainwater (07:15)

The changes in the brain are always happening and so that's part of why what works now is likely not going to work later and it requires of caregivers this kind of constant adaptation.

Tami Anastasia (07:28)

100%. Absolutely. You know, this is a perfect example; had a client and we have a rule of thumb in dementia land you don't remove anything in front of a person with dementia because you don't want to fuel any paranoia that may come because of dementia. And so they will say to me, “well, I had this lovely conversation with my husband or my wife or, you know, a parent. And they agreed it'd be okay to take A, B, and C.” And I'm like, “God, please tell me you didn't do it.”  Don't, don't, don't do it. Boom. They take it. “What did you do with my stuff? You're stealing my stuff.” 

You know, it's hard not to take what the person says with cognitive impairment, in a moment of lucidity, but it's fleeting, right? So it's really, we have to sort of develop this whole new skillset of understanding we live in their moment when they have moments of lucidity, it's that moment, but that doesn't stay constant. That doesn't become the norm. It's actually the opposite, right? So families have a very difficult time. 

And another thing I see in my practice a lot is that the caregiver wants their loved one living with dementia, they want their acceptance. They want their approval. So a lot of times they're gonna ask their permission. They're gonna tell them things that may not land very well for the person with dementia. I don't know about you guys, but not too many people I know like being told that you need help and that I can't take care of you anymore. Right? 

Shoshawna Rainwater (09:05)

Yeah. Mm-hmm.

Rachel Coady (09:06)

That's hard.

Tami Anastasia (09:0)

And so we have to sort of retrain the caregiver on how to now communicate differently with people living with dementia. And it is very, very, very difficult because you also have the underlying dynamics of what the relationship was pre-dementia. 

Rachel Coady (09:25)

That's for sure.

Tami Anastasia (09:26)

Anything that irritated you before dementia, ooh, is going to get elevated with dementia.

Rachel Coady (09:32)

Yeah.

Shoshawna Rainwater (09:34)

Well, Tami, I think that's a great segue into the next part of what we wanted to talk about, which is personal history and legacy of an individual with dementia. And you've written two books, the latest book, Dementia, Caregiving and Personal History focuses on that topic of understanding the personal history of the person living with cognitive changes.

So let's talk about that. The book is incredible; it to me is a book unlike any other I've read in my dementia library of resources. So help us understand, how does understanding a loved one's past change the way a caregiver interacts with them in the present–especially when the person with dementia may not remember those details themselves?

Tami Anastasia (10:20)

Yeah. So all of this evolves out of what I hear in my practice.  So a lot of times behavior issues get dismissed as being challenging behaviors, which they are, difficult behaviors, which they are, but we dismiss it to dementia. When in reality, in my practice at least, when I go looking for a history probably associated with that behavior, there usually is one. 

Shoshawna Rainwater (10:52)

Mm-hmm.

Tami Anastasia (10:53)

There's a history of maybe abandonment, rejection, their needs didn't get met as a child, abuse, trauma. There is a wealth of memories in our brain that are stored somewhere. And pleasant memories are good, but negative memories often get suppressed or repressed. And we learned as an adult ways to work around and not be in touch with those memories, right? Maybe I went shopping, maybe I watched a movie, maybe I went out for hot chocolate, but we had coping mechanisms on how to cope with these memories. But we lose that ability when we get dementia and those memories come to the surface often.

And so we have two issues. The memory comes to the surface as though it's happening today. And then at some point, the person with dementia may not be able to communicate clearly what is happening. Or if they are, we tend to dismiss it to, “oh, it's dementia,” when in reality, if we know what that history is, then we can personalize the care. 

Rachel Coady (12:04)

Hmm.

Tami Anastasia (12:05)

So, for example, I had a daughter who came in and she said, “Tami, I don't know what to do. The care community doesn't know what to do with my mother, but she keeps screaming out certain things.” And so I said, “well, tell me the details of what she's verbally screaming.” So they told me. I said, “it sounds like your mother has been abandoned and or I'm wondering if she's been to many foster care homes.” You know, I'm just grabbing at straws but I'm listening to what I'm hearing. Mom had been to five foster care homes. 

Shoshawna Rainwater (12:40)

Hmm.

Tami Anastasia (12:41)

So obviously abandonment issues, rejection issues, and she was not well taken care of until the very last. So the things she was screaming out, the things that she was saying, the things that she was doing, were very similar to what she experienced when she went to five different foster care homes. When we had that information, I could coach the daughter more specifically on what your mother probably needs to hear and how to care for her. And then we could also coach the care community on “you need to be aware of this.” And we gave them the language and the behaviors did come down. 

Rachel Coady (13:17)

Wow.

Tami Anastasia (13:17)

So, we can't dismiss all. I'm not going to say, “oh, it's 100%,” but I'm going to say it's a large percent that we cannot ignore the person's personal history. Now you have a generation that didn't talk. 

Shoshawna Rainwater (13:34)

Mm-hmm.

Tami Anastasia (13:35)

And so we're trying to piecemeal it together, but it's the details. It's the wording. It's the intensity. There's a lot of things I'm listening for that are going to help me think “ah, this sounds like it's something that happened in their past.” There's a lot more abuse than you know that's out there… 

Rachel Coady (13:55)

Mm-hmm.

Tami Anastasia (13:55)

… that gets re-lived. A lot of trauma, whether you experience a trauma yourself or you saw it yourself will get re-lived. And so these behaviors come to the surface because we don't have ways of suppressing it anymore. We don't have coping mechanisms that distract us. And we have to factor that in when we're taking care of a person living with dementia.

Rachel Coady (14:18)

This is so fascinating to me because I know someone who told me that their parent in this journey started telling them things about their childhood they'd never heard before. And they didn't know if they were kind of hallucinations or made up things or not. But it is, you think about it, like if the brain is deteriorating and changing and then these memories come up that you've held in for so long and you verbalize them, it's their experience, first of all, whatever relevance, truth it has. But what we talk about on the show are like soothers and stressors and the ability of treating it like it's real and how would you soothe and support and counsel someone through that makes so much sense to me as a way to kind of calm them from that core memory that's coming up. That's wonderful.

Tami Anastasia (15:03)

Yeah.  What really made me write my second book is, oh my gosh, we have a difficult, challenging, heartbreaking journey that we travel and yet it might be so healing in so many ways. 

Rachel Coady (15:21)

Hmm.

Tami Anastasia (15:21)

And healing for the person with dementia, we give them language, words, care, that they never received when they were younger. “I love you, you're safe, I'll protect you.” These are things they may never have ever heard. And by the time they pass away, maybe we gave something to them that they would have never received otherwise. 

And then the caregiver has their own, right? We have a relationship with this person. And what if the relationship with the person I'm taking care of was judgmental, critical of me, rejected me, neglected me, hit me, then how do we use this journey also to empower you and to heal old wounds from within, as well? So that was the catalyst for writing the book was we don't talk about how dementia could be healing in so many different ways. Because no matter how you look at it, we are a different person from the time we enter this journey and afterwards. We are so affected and different in a lot of good ways. We have more patience than we ever thought we could, right? We give ourselves more grace, hopefully. I want to replace guilt with grace, right? 

Shoshawna Rainwater (16:34)

Mm-hmm.

Tami Anastasia (16:35)

You learn to be adaptable. Oh my God, you have to adjust, right? And you learn to live in the moment like you learn to live in the moment, not just say “I live in the moment;” you learn to live in the moment. So there's opportunities for so much healing and growth in addition to the pain and the loss and the sadness that you also go through.

Rachel Coady (16:58)

Hmm.

Shoshawna Rainwater (17:26)

You're really asking people to hold sort of the “both/and,” right? To live in that middle space, to live in the gray. This disease landscape does not feel very black and white to me. And when people can settle into a greater acceptance that this is both/and, I think people can cope better over time.

Tami Anastasia (17:24)

Yeah, I think to bridge that we have to grieve the loss and the sadness of what was, plans for the future we might have had, promises that were made that can no longer be honored, right? And that acceptance and we talk about acceptance, but it really comes down to also accepting you. Yes, you're going to get angry. Yes, you're going to get frustrated. Yes, you're going to get impatient at times. But we have to look at these as opportunities for ourselves to say, “what are my emotions trying to tell me? What do I need to do differently?” Not to spend it judging and criticizing and just putting yourself down. There's no room for that. As a caregiver, you have to be more supportive of yourself. Be as loving, kind and patient with yourself as you expect yourself to be with the person living with dementia; give back to yourself, too, right? 

So I think that's what makes this journey very difficult as well is the high standards and expectations that we have of ourselves. And we have to rewrite the script. We have to reframe what we say to ourselves and change our expectations and truly change our expectations of our loved one. I have what I call the three Rs and one of the Rs stands for Reframing what we tell ourselves. So often I'll hear caregivers say, “my loved one won't, my loved one refuses.” And when we go with “won't” and “refuses,” we feel they're doing it intentionally and we're going to take it more personal. When you realize the brain can't, it's not that they won't, it's that they can't. When we can even change that dialogue, is going to allow me to step back and be less reactive and more reflective. 

So there's these subtle changes and it starts with what we even say to ourselves that can change how we care and how we react. So there's a lot of opportunity to really embrace that “I'm doing the best I can.  And the best I can is the best I can.”  And some days are than others.

MUSIC TRANSITION

Shoshawna Rainwater (19:57)

I hear you on the weekly Ask the Expert series through the Dementia Society of America. I hear you often conclude the hour with that reminder that people are absolutely working as hard as they can.  Can you talk a little bit more about the uselessness of guilt and also that powerful question that you ask people about what they would do?

Tami Anastasia (20:22)

Yeah, caregivers are consumed with guilt on many, many, many levels. And yet they're working so hard to do the right thing. They're working so hard to keep their loved one happy, to keep their loved one safe, to keep their loved one secure. And then the loved one may react in a way and then we feel horribly consumed with guilt. “I shoulda, coulda, woulda. I should spend more time with them. I should do this and I should do that.” What if you didn't feel guilty? I have a theory that guilt is a place where we put difficult emotions because we don't know how to process those emotions.

The problem with guilt is it's all internalized. “That's what's wrong with me.” It's not what's wrong with you. What's wrong is dementia. What's wrong is how dementia has changed your life. What is wrong is not you and what you're doing. But if I don't know how to deal with the grief, the loss or the sadness or the frustration or the anger, then guilt is a nice holding place to put it. So I often ask people, “what would you do differently if you didn't feel guilty?” and “how would you feel if there was no such emotion as guilt?”

Rachel Coady (21:36)

That is such an awesome question, I'm going to go so far as to say for everybody, but especially people who are in caregiving and dementia journeys, because that is the first place we go. And I think we hide it under, you know, resentment or anger or other things, like guilt is just a rotten feeling. It's an awful feeling. I love that.

Tami Anastasia (21:57)

Yeah, I often say there's no place for guilt in dementia care, right? We're working too hard to do the best that we can and a bad day doesn't make you a bad caregiver. It just means it was a hard day. 

Rachel Coady (22:08)

A day. Yeah.

Tami Anastasia (22:11)

But I started asking, “how would you feel if you did not feel guilty? And what would you do differently?” And the most common, you want to know the most common answers to that question? Most common answer I hear, “I would ask for help sooner. I would move my loved one sooner. And I would take better care of myself.” Those are the three most common.

Rachel Coady (23:34)

I want to touch on that just for a second, because we have discussed and looked at, I say, “the weight of caregiving.” It is a journey. And I think there's a lot of amazing parts of it too, but there is a, it is a whole new force kind of of life when you become a caregiver. And I think for me and for a lot of our listeners, what can often happen is you lose a lot of the identity that you had before you were a caregiver. There's like a before time and an after time, right?

Tami Anastasia (23:00)

Very much.

Rachel Coady (23:01)

Are there ways that you've seen caregivers be able to maintain their own personal history or that identity, whether it's like spouse or child or individual, beyond caregiver, while they're also fully responsible and kind of being consumed by the caregiver journey?

Tami Anastasia (23:16)

Yeah, it comes down to our expectations. And don't forget, our expectations are self-imposed. Our expectations are also culturally imposed, and they're also imposed from family. And at some point, we can try to live up to all of those expectations, and somewhere in those expectations we're not going to be able to meet them all, because they're often very unrealistic under the circumstances. 

So at some point you have to get control back and say, “you know what? I'm going to rewrite the script in a way that supports me as well as my loved one, but not at the expense of myself, of my physical, mental and emotional wellbeing,” right? “I'm going to reframe here again, reframe or rewrite the messaging. So it supports me rather than working against me. So it empowers me rather than deflate me.” That in and of itself is very challenging and very difficult because we're going against messaging that we received for a long time, but it doesn't work. Circumstances have changed. 

So we have to rewrite the messaging. We have to reframe what we say to ourselves so it's more supportive of the love and the care that we're providing, rather than fueling the guilt, rather than “I'm doing something wrong, I am bad.” No, we can't meet all these expectations if the circumstances don't allow us. 

Rachel Coady (24:55)

Yeah.

Tami Anastasia (24:55)

So I have to rewrite the script again to support me as well as the person I am taking care of, not at the expense of myself. 

And you look at a lot of the cultural and the family messaging, hard to live up to them 100%, almost nearly impossible. And then thank you, guilt. Now guilt comes in and now it's all about what I'm doing wrong rather than all the things I am doing correctly. I don't even like to say right or wrong, good or bad, right? It's just we're all doing the best we can. And it is a learning-by-doing process. And at what point we have to give ourselves permission to learn without feeling guilty and that we're a bad person.

I will be the voice that will give you permission. You have permission to take a break. You have my permission to say to yourself, “I can't do this anymore and I need to ask for help.” I give you permission to acknowledge your limitations without judgment. I give you permission to get frustrated and ask yourself, “what is my frustration trying to tell me? What is causing me to feel frustrated? What do I need to do differently?” I give you permission to be kinder, loving, nurturing, and more compassionate with yourself. I give you permission to love yourself in the same way you love dearly others.

Rachel Coady (26:36)

Going back to your idea of expectations, I think there's also this, it's tied to expectations, but the sense that we should be great at something or we could be doing it better or someone else does it better. But for many of us, it's the first time we've ever been a caregiver in this role. And I always think like, “why when you're doing something for the first time, would you be perfect at it?” there's not even a perfect, an expert at it. Like, of course this is uncomfortable and different because we haven't done it. You've never done this before. 

Tami Anastasia (27:04)

Right

Rachel Coady (27:05)

You know, I had an uncle that would always say, “I've never grown old before. I don't know how to do this.” 

Tami Anastasia (27:09)

There you go.

Rachel Coady (27:09)

But I think, there's a grace in that, that we all need and we want to extend to caregivers, which is “if you're doing something for the first time and it's as heavy and big and, and involved as caregiving can be in dementia, why would it be possible for you to be an expert at it? You've never done it before.”

Tami Anastasia (27:28)

Yeah, it's an excellent point. But I think it's something, again, it goes to the messaging very, very young, you know, you think about us, let's go backwards a little bit as children. Again, we as caregivers, we all have a history. We want to please our parents, we want them to be proud, but our needs may not get met. And the way I think we walk away as children is “well, our needs didn't get met because something's wrong with me.”

And if we don't work through that and understand “my needs didn't get met, not because something's wrong with me, but because our parents or whoever the caregivers were of us at a young age did the best they could.” So I think that that follows us from a very, very young age that I shoulda, coulda, woulda, I shoulda, coulda, woulda. And you're right, we're all doing this for the first time, maybe for the second time, maybe for the third time, but no two journeys are exactly the same.

Rachel Coady (28:21)

That's so true.

Tami Anastasia (28:23)

But you're absolutely right. We never were taught to give ourselves grace, but we are so used to feeling guilty. So I say to my caregivers, “you go out of your way to support a friend. You go out of your way to support a child, to make them feel okay. And the person we beat up the most is our own self.” So we have these skills, but we just don't apply them to ourselves. And we need to apply those skills to ourselves. 

Rachel Coady (28:54)

So true.

Tami Anastasia (28:56)

And we only come equipped with what we know…

Shoshawna Rainwater (28:58)

Yeah. 

Tami Anastasia (28:59)

… and what we don't know we will learn, but we need to be open to learning rather than judging and criticizing ourselves for what we don't know and judging and criticizing ourselves, be open to learning. Like, “what is this trying to tell me?” Or I always say note to self, note to self, note to self, right? Like, keep that in mind for next time. 

But I honestly don't think that truly we've been raised to know how to be supportive of ourselves because we live in a time where messaging is very negative and it's all about external rather than internal.  And this journey profoundly affects you internally, profoundly. And again, what an opportunity, not that any of us want to jump on the bandwagon, believe me. If we could avoid the whole dementia thing, that would be fabulous. But it's here. And how do we grow from it, give ourselves permission? 

Tami Anastasia (30:08)

We don't talk about these things. but you might be taking care of somebody who was not kind to you, not even were they kind, but they were downright mean and abusive.   And in my second book, I have a chapter, specifically, how to take care of an abuser.  So, you know, we have to factor in, again, we're all doing the best we can, and maybe there's a lot of things we don't like, but then how do we change it? But the most important person we have to love and embrace is ourselves. It's most important.

Rachel Coady (30:34)

So in a world where we're with people who have maybe not been the best to us, or we're over caring for people and not reclaiming what we need for ourselves, can you talk a little bit about this idea and how we can care for someone to the best of our ability without letting go of everything of our own wellbeing?

Tami Anastasia (30:53)

Yeah, a lot of it's setting boundaries, meaning emotional boundaries, physical boundaries, time boundaries, task boundaries, right? It starts with us being able to admit what I can do and what I don't want to do. It's being able to give yourself permission to say, “I have limitations and I'm willing to do A, B and C, but I'm going to need help with D, E, and F,” right? But here again, very difficult for caregivers to give themselves permission to acknowledge their limitations without feeling guilty, without judging or criticizing themselves. 

And so when we learn how to set those boundaries, we take better care of ourselves. And on some level, we also, we care differently. We don't care less. We care differently. Meaning we're able to love the way we are capable of loving both the person I'm taking care of, but also loving myself and protecting myself. 

So I talk a lot about boundaries. We're not just thinking emotional boundaries, we're talking all boundaries– time, task, emotional, physical, learning how to ask for help. Now you bring up another one where we don't get family support. You're working very hard and you know, there's dynamics in the family and believe me, I see a lot of family dynamics and how to not engage and say, “you know what, I'm gonna protect myself from even other family members” and how do I do this? And it starts with “what do I need to protect myself? And what do I need that is not going to make me lose myself?”  Because as we all know, caregivers lose themselves in this journey a lot. You both mentioned that early on. And it's really, where do I factor in and is it okay, right? 

I mean, let's face it, how many of you’ve been told, I mean, I was raised this way that it's, Oh “God, for me to ask for what I want, that's being selfish,”  right?  My gosh, I had to work a lot through that. You know what I mean? Or you're being self-centered or you're being egotistical. My gosh. Just because I wanna take care of myself, right? 

Rachel Coady (33:11)

Yeah. Have your needs met. So common. And I think it's taught different in gender, across culture. It's taught differently in age groups, like the way we're raising children today is very different than maybe the way some of us were raised.  But, yeah, there's signals everywhere that you're not the top priority. 

Tami Anastasia (33:28)

“God, it's selfish.” I work on that every day, right? I work on guilt every day. Truly. At one point I used to say, they used to say, “what's your middle name?” “I'm all Tami Guilt Anastasia,” right? I lived that way day in and day out. 

So, you know, it's questioning the messaging and you have a right. And, but it's finding where are you comfortable because I'll have clients that say, “you know, Tami, I'm just not comfortable doing that.” “Okay.  Is there a compromise? Is there a place where we can start?” And just a little, little, little start is better than nothing, right? And I coach them on how to deal with other family members that don't get it or that are uncooperative or are greedy. I mean, they're all out there. But I think, again, if you look at the messaging from a young age, we're told we're selfish if we take care of ourselves.

Shoshawna Rainwater (34:19)

Mm-hmm.  That's a difficult message to undo when it's so deeply ingrained in us. 

Tami Anastasia (34:25)

Especially when it's reinforced by a parent or a parent now who has dementia and says, “you never cared for me anyway. You always thought about yourself.”  Oh my gosh, right? 

Shoshawna Rainwater (34:36)

Yeah.

Tami Anastasia (34:37)

The damage that dementia does fuels what they already are believing. And now you've got to work with the caregiver to say, “Hey, wait a minute. Let's put this in perspective.” There's just so many dynamics that go on when we're caring for a loved one with dementia.

Shoshawna Rainwater (34:51)

Yeah. And we talk on this podcast about how dementia is not a one-person job. It is a team sport because the symptoms of the disease just get simply too big for one team member, one person to manage. Dementia will outstrip the resources of a single individual caregiver, probably by mid-stage.

Tami Anastasia (35:14)

Yeah, that's usually about the transition,I would say about middle stage. What starts off as being manageable starts to become unmanageable because the needs are increasing, the needs are increasing, the needs are increasing, but the caregiver struggles with, “I don't want to let them down. I don't want to make my loved one angry,” right? And so this becomes very problematic and the caregiver often feels emotionally trapped, “because I should be able to, I should be able to.” And the needs increase, the needs increase, the needs increase. And I often say “dementia demands more care than one person can provide.” And it's the caregiver giving themselves permission. But remember that question, “what would you do differently if you didn't feel guilty?” 

Shoshawna Rainwater (35:59)

Yeah, powerful. 

Tami Anastasia (36:01)

Yeah, because asking for help also is not accepted in many ways, right?

Rachel Coady (36:07)

Nor modeled almost anywhere in culture. It's just like, you're weak if you need help, which is… 

Tami Anastasia (36:16)

Or a failure. 

Rachel Coady (36:17)

… doing so much damage to all of us. Yes. 

Tami Anastasia (36:16)

Right? Yeah, exactly. Exactly. 

Rachel Coady (36:18)

It's ridiculous, yeah.

Tami Anastasia (36:19)

So there's just a lot that we can gain.  For as painful as this journey is, again, the growth can be transformative in many, many ways. And no, you're not selfish. And no, you're not going to have a big ego. And no, you're not fostering dependency. I mean, there's just a lot of messaging that we have to rewrite. We have to rewrite the script. We have to reframe what we say to ourselves about our loved ones as well as what we say to ourselves about ourselves.

MUSIC TRANSITION

Shoshawna Rainwater (36:58)

Tami, pivoting to some practical advice, what do you think is the single biggest mistake people make when they're trying to communicate with a loved one with dementia? Is there anything that stands out to you? 

Tami Anastasia (37:10)

Honestly, before I answer that, what do you think it is? Because I'm just be curious what the two of you think it is.

Rachel Coady (37:16)

My guess is probably just being fully honest and open and engaging with them like they could when they had full cognitive ability. Because I think it's a really hard thing to let go of, like, “I can't talk to my mom the way I normally talk to my mom right now.” But that's my guess. I'm not an expert like you guys.

Tami Anastasia (37:35)

Excellent guess. Shoshawna?

Shoshawna Rainwater (37:37)

I would say trying to seek their buy-in and permission for things. 

Tami Anastasia (37:41)

You both nailed it.  It's both. They overlap. We have a difficult time entering their reality. And the reason we're so honest, because we're trying to explain, we're trying to get their buy-in, their acceptance, their approval. And if I tell them enough and enough and enough and enough and enough and explain and explain, eventually they might come on board. Oh, and then we have this moment of lucidity, they agree. And then two seconds later, “I never agreed, what are you talking about?”

And then you get engaged and “well, we just talked about it yesterday; you said you were okay with it,” right? You both hit the nail on the head. Really, really, really, I would probably say that is the most difficult challenge and this is what I will hear. “I'm not lying to my loved one.”

Shoshawna Rainwater (38:32)

Meaning people say, you don't ask me to do it your way. I have an ethos of being a truth teller. That's what you're saying?

Tami Anastasia (38:39)

Listen, I'm going to speak honestly. I was raised, I never lie, right? But I don't see myself lying when I'm entering the dementia world because it's not about me anymore. It's about, “I am going to do everything in my power to keep you at peace. And I don't want to deal with the fallout of distress. I don't want to deal with the fallout of the anger and the potential trauma that my truth could cause you.” 

“You have a brain that's distorting information. You have a brain that's going to say things that are incorrect. You're going to have a brain that's going to re-live trauma. You have a brain that's going to re-live past experiences. My job is to find ways to keep you at peace.”  And if I have to slant the truth or I have to withhold information, I'm going to tell my mother we sold her house and she's never going to be able to move back there again. Oh gosh, right? “Because I have to tell you the truth because she needs to understand” but we lose sight that this brain is impaired. This brain is not capable, probably, of processing it.  And I know where it can go. I know how it can distort information. I know how it can get misperceived. I know how it can confabulate, right? I don't want to give you more information that your brain could spin. 

Rachel Coady (40:09)

Mm-hmm.

Tami Anastasia (40:10)

Then I have behavior issues that are not calming anymore. And when they get worked up, I want to do everything I can to bring peace to you. And I always tell people, “if I ever get dementia, you tell me whatever you want to tell me. I don't care what you tell me, as long as it makes me be at peace, as long as it makes me feel secure, as long as it makes me feel safe. I don't need you to tell me things that could make me upset. I don't even want to know what those things are. So I'm giving you permission. You tell me whatever you want to tell me, because I'm not telling you with the intent to deceive you or to hurt you. I'm asking my friends and my family to tell me anything I want to hear that will keep my brain at peace. 

Shoshawna Rainwater (41:04)

Right. And that's part of that, that increasing-the-soothers, decreasing-the-stressors lens that we ask our listeners to think about implementing. it's telling people, tethering them to truth that will be difficult for them emotionally is a stressor. That's a distressor.

Tami Anastasia (41:25)

Yeah, and we're not lying. See, that's the thing. There's the reframe, you know, as you know, I call them “therapeutic acts of kindness” because lying is done with the intent to hurt and to betray and deceive. “I am telling you what I want you to hear because I want you to feel safe. I want you to feel secure. I want you to know that I've got this and you're protected. And so I am going to tell you whatever it takes for me to make that happen.” And sometimes the hard honest truth that's staying in our reality, not theirs. 

Shoshawna Rainwater (42:04)

That's right. I heard someone describe these ones as “comfort stories” that they tell their person and I thought that was really beautiful. Therapeutic fiblets…. 

Tami Anastasia (42:16)

Yeah, but see, even there, “therapeutic fiblets,” why do we have to call them fibs? Why do we have to call them lies? Why can't they be therapeutic acts of kindness? That's really what they are. We're just doing acts of kindness to keep an impaired brain from going places that are very traumatic and difficult for them. 

Shoshawna Rainwater (42:38)

And we already do this for other populations of folks who have either developing brains, so we adapt age to age-appropriate communication for people throughout their lives, right? When they're younger, we don't give them the full, difficult story about something. And we fold in these comfort stories for people with changing brains.

Tami Anastasia (43:02)

Well, my example is this. How many times have you told somebody when they said, “so,  does this look on me?” Or” how do you like my new haircut?” How many times have we fibbed and said, “it looks great,” because we don't want to upset you or hurt your feelings? 

Shoshawna Rainwater (43:16)

Right. 

Tami Anastasia (43:16)

How is that any different than not telling somebody with dementia something that could upset them or hurt their feelings? Right? I mean, it's that simple. 

Shoshawna Rainwater (43:28)

I mean, the average human tells many fibs throughout the day or lies. Yeah.

Tami Anastasia (43:33)

So “I'm going to withhold that information because I don't want to hurt your feelings and have you get mad at me and then really be mad at me.” Like, “well, you don't have a good sense of taste anyway” or something, right? It's really not that much different. But in the dementia world, that is probably the most difficult core issue that comes up for sure in my private practice. “I'm not lying to them.”

Shoshawna Rainwater (43:55)

Yeah.

Rachel Coady (43:55)

Mm-hmm.

Shoshawna Rainwater (43:57)

Tami, if you could change one societal stigma about dementia or the way that we view caregiving, what would that be?

Tami Anastasia (44:06)

Changing stigma starts with ourselves. We are the ones that have to change the stigma within ourselves about what we think about dementia and anything else related to dementia. So if we wanna make a difference, it starts with us making a difference first. 

Shoshawna Rainwater (44:24)

Does that speak to the fact that we are all swimming in the soup of kind of a hyper cognitive world where if you don't have full cognitive capacity, you are at a disadvantage?

Tami Anastasia (44:37)

Yeah, I mean, you I have visual impairment. I have a disability.  People expect me to be able to do things that I just can't do because of my vision. And I have to be okay with that. I have to be able to say. Now people living with dementia can't do that. But if we want to change stigma, it starts with us advocating and not being afraid of it ourselves and not buying into it. You know, stigma, where does stigma come from? From culture, family messaging, right? And so, you know, we have to advocate and be okay ourselves if we want to change stigma of anything. 

Rachel Coady (45:16)

When you look at the work that you're doing right now and the clients you're working with, communities you're working with, where do you find hope?

Tami Anastasia (45:23)

For as painful as it is, the process. Because every step of the process is a process. And I find hope in hopefully making the process better for people, maybe for the first time in their life; I don't care if they're on this journey for 12 years, but they took one minute out of their day to say, “you know what, I'm okay.” There's your hope, you know; the hope is in the process, honestly. 

Because the process is difficult, the process is sad, it's heartbreaking, and yet it can be unbelievably meaningful, can be very touching, it can be very moving. In some ways with this journey, it pushes us past probably a normalcy. It forces us to have to change in so many ways that if I wasn't on this journey what may I have missed out on that makes my quality of life and me a better person because of this journey–including the anger and the frustration and being impatient that comes along with it?  

It's so transformative in many ways, whether we're conscious of it or it's unconscious, t he hope is in the process, which includes the bad and the difficult and the sad and the grief and the loss and the sadness, but also the meaningful and the connection you can make that maybe you would have never had if we didn't have dementia. We learned to communicate totally different. We learned to connect totally different on a profound deep level in ways we could have never imagined if we weren't forced to do it.

Rachel Coady (47:08)

I really relate with what you're saying right now. And one of the things I recall when I was on my caregiver journey was having this kind of moment where I realized that my idea of getting out of the game, there was no way out. It was through. And I remember thinking to myself on a drive one day, “I don't want to miss a single opportunity to learn from this. Like,It's going to be hairy. It's hard. This is a rock bottom experience in my life. I didn't ask for, I don't know how to navigate and I'm not going to miss a grain of what this can offer me.” And I will say now I'm on the other side. My mom's passed and I am a better Rachel. I am a totally different Rachel because of getting to be a caregiver. And I really offer that to the listeners. You know, we talk a lot “wherever you are in this journey, it won't stay this way forever.” But when you're in another place with it, you have the opportunity to really appreciate and admire what you did in just doing your best.

Tami Anastasia (48:05)

It forces you to develop skills that you never probably thought you were capable of. Or you might have been good at, but boy oh boy, do you even become better at it. And you also learn what your limitations are without judgment, without criticism. You learn that maybe I can ask for help and maybe you learn that “it's okay for me to go out and have coffee and I'm not being selfish.” I don't know.

Rachel Coady (48:32)

Yeah.

Tami Anastasia (48:32)

I'm not going to sugarcoat it, but I am going to say it is whether you just rode the journey, it's transformative the minute, the day, you find out your loved one has dementia.

Rachel Coady (48:46)

And I think going back to what you've shared so much about on our podcast today, I have a very different understanding of permission for myself and of personal boundaries than I did before this journey. So, thank you so much for all the wisdom that you shared today and the expertise. I'm sure that our listeners are going to want to know more. Where can they find more about you or reach out to you, more about the work you're doing.

Tami Anastasia (49:13)

Yeah, so you could go to my website, tammieanastasia.com and there you can contact me through my website, phone, email. As far as purchasing my books, you can find them on Amazon. And if you need the links for those, let me know.  

Shoshawna Rainwater (49:31)

I do want to add one more place, Tami, that our listeners can find you, and that is through the Dementia Society of America has a weekly call-in program called “Ask the Expert,” where you field people's questions about how to care well for their person; it's a wonderful way to hear your expertise, as well. So making sure folks know about that. 

Tami Anastasia (49:56)

Thank you. And thank you for bringing up Dementia Society of America, because they're a wonderful national organization that people can find some good stuff there. 

And before we log off, I also want to say something to the both of you. Don't underestimate the value that you both bring to the lives of the caregivers by doing this podcast and the journey both of you have been on. So, thank you for the wisdom that you both share also. Again, all of us are in this, sharing with one another. In that old saying, it does take a village, please you, too, don't underestimate the value that both of you bring to the lives of those that you touch, as well.

Rachel Coady (50:39)

Thank you.

Shoshawna Rainwater (50:40)

Thank you Tami. That means a lot. 

So listeners, today we talked with Tami Anastasia, dementia expert and author about all things real in the dementia landscape. Caring for oneself, giving ourselves permission to let go of guilt., caring well for the individual experiencing brain changes.  So we are so grateful to you. And listeners, it was so good to be back with you today. I know we were on a break and we look forward to being with you again.

Rachel Coady (51:13)

We'll be back soon with another episode of Hope Floats. Until then take care and thank you for all that you're doing.  You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences, and let us know what could help you navigate this journey. We want to support you.

Shoshawna Rainwater  (51:37)

You’ll find us at our website hopefloatspodcast.com.  When you’re there, you can learn more about how to work individually with Rachel or Shoshawna for support with your specific circumstances or situation. That’s also where we’ll share more tools, resources, and libraries that can help people on this journey.

Rachel Coady  (51:56)

Never miss an episode of Hope Floats by following us wherever you listen to your podcasts and join our community at hopefloatspodcast.com.