SCI EP 151: Tami Anastasia, Essential Strategies for the Dementia Caregiver
https://www.asnmarketingplan.com/sci-151-tami-anastasia-new-book/
https://tamianastasia.com/
SCI EP 151: Tami Anastasia, Essential Strategies for the Dementia Caregiver
https://www.asnmarketingplan.com/sci-151-tami-anastasia-new-book/
https://tamianastasia.com/
Valerie VanBooven RN BSN:
This is Valerie VanBooven with The Senior Care Industry Netcast, where leaders with three or more years of experience in the senior care market share their advice. So let's get to it. Tell us who you are and what you do.
Tami Anastasia:
My name is Tami Anastasia. I am a dementia consultant and educator and I also facilitate several caregiver support groups. And most recently the author of this wonderful book and also I do a lot of educational webinars and presentations.
Valerie VanBooven RN BSN:
You have been with us before and we're so glad had to see your book out. I was happy to see that announcement come through my email, so congratulations.
Tami Anastasia:
Thank you very much. And thank you for having me again.
Valerie VanBooven RN BSN:
Sure. Is this your first book or have you written other books?
Tami Anastasia:
This is my second book. The first book I wrote was in 2002 is on the psychology of making exercise a habit actually.
Valerie VanBooven RN BSN:
Oh, nice. Wow. It's been a few years between books.
Tami Anastasia:
Yep, yep, it has. And a whole different angle now.
Valerie VanBooven RN BSN:
Yeah, absolutely. Lots of updates and a different topic here, mostly about dementia. So tell us all about the book and what readers should expect and who should buy this and who would learn from it.
Tami Anastasia:
So I wrote the book specifically for the family caregiver who's taking care of a loved one with dementia. I have a private practice, so I meet with people one on one and I also do the support groups. So I took all of this information that I felt that caregivers need to know. So the first part of the book is talking about dementia in lay people's terms. It's not scientific in any way. Other than I talk about dementia, the changes dementia causes in the brain. The second part of the book is about how dementia is going to change your loved one and how those changes are going to affect you and then how to cope with those changes. Then the third part of the book talks about what I call the 4Ds of dementia care, and it applies to 11 specific challenging behaviors.
Tami Anastasia:
So it talks about repetitive questioning, sun downer, shadowing, incontinence, bathing, toileting, the things that are considered most challenging across the board that I hear the most in my practice from all the caregivers. So I wanted to provide a book that basically walks them through this journey. It's a fabulous book for the family caregiver. But it's also a wonderful book for professionals because it'll provide a lot of insight also in terms of what the family caregiver goes through emotionally. Then it's loaded with strategies, loaded with insight. So I think it's just a nice book. If anybody's in the elder care professional dealing with dementia, has clients who are taking care of a loved one with dementia, I think it's a wonderful resource.
Valerie VanBooven RN BSN:
It sounds to me like it'd be great for the professionals to have it, but also to have one to hand to the family and say, "Here's something that I think will help you. I know it helps me and others."
Tami Anastasia:
Especially home care agencies, they go in and they work with the families a lot. This would be a fabulous book to give to the client to say, "This will be a great book to help you sort through this journey." And what it really does, it really walks you through the whole journey. I wrote it, I wanted them to feel I was standing side by side with them. That if they were talking to me privately, I wrote it as though they were speaking to me privately, and I would be supporting them in the same way that this book walks them through.
Tami Anastasia:
So it lines up all their ducks, how this disease is going to progress no matter where they are on this journey and try just to help and equip them on what to anticipate and how to walk through it. So anybody who has a home care agency, elder law attorneys, anybody in the field dealing with families who have dementia, it's a great, great resource. The care communities, the memory care communities, they have so many tours they give. And by the time they make this decision to make this move for their loved one, it's a huge emotional roller coaster. And this would be super nice for them to have.
Valerie VanBooven RN BSN:
I think that when most of the families come to a home care agency in crisis, come to assisted living in crisis, there's been a lot of discussion and a lot of talk. And then finally, there's that straw that breaks the camels back and here we are. So having a resource to be able to hand to somebody, even if today is not the day that they pull the trigger, and say, "This really might help you in your journey. And we hope that we can be your provider. But in the meantime, we hope that this book helps you a lot." I think that would be [crosstalk 00:05:14] resource for people.
Tami Anastasia:
It normalizes, and I talk about the feelings. You're going to have resentment, you're going to deal with anger, the caregiver guilt is enormous. I talk about caregiver guilt, how to cope with these feelings. And a lot of caregivers feel really guilty about the decisions they have to make, they feel guilty for having these feelings, I want this to be over, I don't want to be in this position anymore. I want to normalize those feelings. Those feelings are normal if you're a dementia caregiver, but how do we cope with those feelings? And that's what this book is going to allow, is I give you tools on how to cope with these feelings. But more importantly, I validate, these feelings are normal. And I really talk about caregiver guilt a lot because it holds them back and how to substitute guilt instead of feeling guilty, let's have some compassion and self understanding. Let's replace the guilt with other ways of coping with these emotions that empower you rather than make you feel bad about yourself.
Valerie VanBooven RN BSN:
Wow, what a nice refreshing look at how to care for someone with dementia. I'm so glad that you put all of your years of experience with families into this because it really... I know there are a lot of books out there, but when you really get down to brass hacks about the real nitty gritty challenges of caring for someone with dementia, it's so challenging and it's heart wrenching. And you wonder, why was I put in this position? Why is my husband or my wife or whoever it is, my mother, why did she have to suffer and go through this? She was such a good person or is such a good person. It goes on and on.
Valerie VanBooven RN BSN:
I know we have a, and this is kind of by accident, but on Facebook, we have an Alzheimer's and dementia support group. And it's international and people come from everywhere and they're in that group. We used to be this little small thing. And then all of a sudden it took off and there's 60 people a day joining and it's crazy. I read these stories and I'm just like, "Oh, I can't read anymore of these stories. These people are just..." It's horrible situations sometimes. People are making the best of it, they're doing a great job caring. And if they're venting in a nice way or they're telling their story to others and getting support, these people are supporting each other in a nice way. But when this happens, you know that they could use a resource like this to also help them understand that it's okay to have the feelings that they're having about all these things and it's okay to not know exactly what to do next.
Tami Anastasia:
Yes.
Valerie VanBooven RN BSN:
That's not abnormal, it is normal, you've never been in this position before. So this would probably be a very great resource for those folks as well. So we'll post it there and we'll let you know so that you know that there's folks out there. What also amazes me is in regard to dementia and caregiving is there's an unlimited the number of humans in this world going through this. This is an enormous issue, just enormous. There are support groups out there on Facebook and virtually in other places that I have hundreds of thousands of people in them, so this is... And in our group, what I see is people coming from Sweden, Norway, Israel, they're coming from everywhere, Brazil, and all have the same, it's a universal set of challenges.
Tami Anastasia:
And dementia is going to affect every person differently as a patient. And it's also going to affect every caregiver differently because you have this relationship with your loved one and we have pre-dementia the relationship and then we have how the relationship changes once they get dementia. So the book talks a lot about how this transition happens and you deal with this loss of your loved one, the way you knew them, how do you embrace this new person who's different? There's still ways of connecting. And so in the book, I provide a ton of strategies on how to reconnect with your loved one at their level based on where they're at in this disease. But we can't ignore the tremendous loss it is for the caregiver.
Tami Anastasia:
The person going through dementia doesn't know what the changes are as much as the family caregiver is so affected. I truly believe in my heart of hearts that this disease actually is harder on the family caregiver because they have two worlds now they have to navigate. They have to navigate the realities of how this dementia, how this disease is affecting their life, their relationship, the person they love. And at the same time, they have to know what it's like now to enter the dementia person's world and know how to connect with them and how to diffuse things. So my 4Ds of dementia care are to detach, to document, diffuse, and distract because all of these skills are required. And at the same time, the family caregiver has these emotions and these feelings. So it's a huge emotional juggling act.
Tami Anastasia:
And if I could provide a book that helps them survive this journey, my goal is they survive this journey so it's not at the expense of their physical, mental, and emotional wellbeing. Because when you read the statistics on how many caregivers pass away before their loved one, it is startling. I want the caregivers to know you're not alone, there is help, you will get through this, you will survive this. No matter what emotion, no matter what you're going through, you will survive. Which is why support groups are fabulous. I just wanted to add a little something. This is a book they could pick up, they go to the table to the content, and they say, oh, this is an issue right now, they can turn right to the page.
Tami Anastasia:
It may not be a book that is read from the beginning to the end. It's chalk full and a lot of people are going to read it from beginning to end. But if you're dealing with repetitive questions and you don't know how to deal with that, you could go to the chapter on repetitive questions. So it's just a wealth of information, but more importantly, it's a tool to have by your side when you need it at one o'clock in the morning and your loved one is restless and they want to wander, they want to get out of the house, they're asking, "Let's get out of here." They're afraid. It's a tool to have on that nightstand right by their side that's going to help them walk through this no matter what is going on when.
Valerie VanBooven RN BSN:
That's amazing, that's awesome. We all need that little toolkit to help us get through a certain moment. Some days are smooth and some days are crazy, and you never know what the day's going to bring, right?
Tami Anastasia:
Right. And that's the thing about dementia, you have to laugh, you have to have a sense of humor sometimes. The stories that the caregivers share with me, "We have tears but we've got laughter, we've joy, we've got sadness, we've got grief, and there's opportunities for having a meaningful connection." But this is the problem with dementia, I always tell my clients, that it may work one moment and you think, okay, I've got it down, this is going to work, and boy on a dime, it doesn't work. So it's constantly trial and error, trial and error.
Tami Anastasia:
And the other thing I really point out in the book is also that you need to know that as dementia changes, it's also going to cause different reactions in you. But you also need to know that these are opportunities, things that don't work are not failures. Mistakes are opportunity to learn from. Sometimes to figure out what's going to work is by looking at why it didn't work. So I talk a lot about that too, is that don't beat yourself up, that's another reason why I wrote this book. Because the family caregivers are beautiful and amazing people, they have no idea how wonderful they are. And then they get consumed with, I said something that made my husband angry or I did this or I did that. You're a amazing people. They need to know they're amazing people. And this book is to remind them you're doing a beautiful job taking care of your loved one.
Tami Anastasia:
And that's why I call it learning to pace yourself. P-A-C-E is an acronym. So the P stands for give yourself permission for trial and error. The A stands for how to accept your loved ones, acknowledge your loved one's new reality. And how do you deal with their changes? How do you cope with them? And then the C for compassionate care. Provide compassionate care for your loved one, but also be compassionate with yourself. And then E stands for empower yourself, educate yourself. I go through ways how to do that. And that's where we line up the ducks, that's where what's coming down the pipe.
Tami Anastasia:
You can't do this alone. Caregivers cannot do this alone, dementia won't allow you to do this alone because of how the disease progresses. So I talk about how to hire a care agency or when you decide to move your loved one, how to transition, how to do it, and set up an emergency plan. It's so chalk full of you get the diagnosis and people often say to me, "And then we're left." The doctors, they don't hold their hands through this journey. Someone's got to hold their hand through this journey, and I wanted to be that person.
Valerie VanBooven RN BSN:
That is so great, I love this. So I will make sure that this is... The book, is it on Amazon? Let me ask you that.
Tami Anastasia:
Yes, that is where you order the book or from me, correct. Or my website, even my website.
Valerie VanBooven RN BSN:
We'll put your website up there so people know how to get it. And we'll make sure that the picture of the book and everything is with this interview so that folks know how they can get ahold of this. I was going to also ask you, I've asked other authors this, are you planning on or have you recorded audio to have audio version of the book or have [crosstalk 00:16:46].
Tami Anastasia:
So that's something that's in the works. Right now, it just came out January 4th.
Valerie VanBooven RN BSN:
Yeah, it's very new.
Tami Anastasia:
So we've got few more things to do ahead. And audiobook, hopefully eventually. It is on Kindle, so again, if you order from Amazon, you could get it in a paperback and/or you can order it as a Kindle book.
Valerie VanBooven RN BSN:
Nice, very nice. I know people love to listen while they drive or listen when they're doing the dishes or whatever. So those are nice things too. But I think, like you said, having the physical book by your nightstand and turning to that page that talks about what to do at 1:00 AM is also super valuable. So that is awesome. So I hope there's audio version too. I think also people learn in so many different ways.
Tami Anastasia:
Correct.
Valerie VanBooven RN BSN:
They absorb in different ways, so all those options. And it's so nice that we have this available to us now, whether it's on our Kindle, our computer, or in hard copy book, that's awesome. Well, thank you for writing this and for doing this. It's been a great journey knowing you and reading all of your cool emails. I would say that if anybody goes to your website, they should sign up for your newsletter because you do email quite regularly, which is awesome. And you're always informative and educational.
Tami Anastasia:
That is the goal. My mission is to provide as much information to help people get through this journey. I always want my blogs or my posts or anything I do to be informative. If you can make a difference when one person can read one thing, I feel I've accomplished what I was meant to accomplish. I don't have all the answers, but I certainly want to do the best I can to provide you with as much information that can help you through this journey. Again, because it is so unbelievably taxing. And there's so many challenges, so many demands and responsibilities. I have to say, a lot of caregivers will share with me how lonely it feels, how isolated they feel because a lot of people don't know how to deal with somebody with dementia, even their own family members.
Tami Anastasia:
So I just want people to know you're not alone, that we will help you get through this. And no matter where you're at, no matter what emotion, no matter what you're going through, you'll survive. And it will be an up and down road and know that that's normal. But what can we do to make this journey easier on you? How can we equip you so that you have more self confidence? A lot of caregivers will share with me how uncertain they feel about certain decisions they have to make, and I want to build up that self-confidence.
Tami Anastasia:
I want you to know you're doing a fabulous job. And because you may not get support from other family members or other family members don't agree with how you're doing things, but you're the primary caregiver, I need to know you are doing a good job, you're doing a great job, and they need to know that. When you have a support group, what's lovely about a support group, as you know, Valerie, is the support that everybody else shares. I'm a professional, my grandmother did have dementia. And back in that time, they thought it was senility. Remember the old days they thought it was the iron from the pots that they took in and they called it senility.
Valerie VanBooven RN BSN:
Oh, yeah.
Tami Anastasia:
Now I'm a dementia expert specialist and I'm like, "Oh my God, this is what my grandmother had." But they didn't know then it was Alzheimer's or dementia. So again, it's lovely to see the support. I feel the more support, the better. And there's not enough support out there. And people need to be more educated about dementia so that family and friends can be of support to the person who's going through this journey. And the person with dementia, there's more understanding about what they're going through as well, right?
Valerie VanBooven RN BSN:
Yes.
Tami Anastasia:
This affects everybody. As you know, in dementia is considered either the long goodbye and or dementia affects every single member in the family.
Valerie VanBooven RN BSN:
Exactly.
Tami Anastasia:
It's just not the patient. So how can we provide as much support to these families and again, the primary caregiver who has their plate full?
Valerie VanBooven RN BSN:
Yeah, absolutely. Well, congratulations again.
Tami Anastasia:
Thank you.
Valerie VanBooven RN BSN:
This is amazing. And I know it's going to help so many people, so thank you. And thank you for coming on and telling us about it, I'm so excited. We will make sure everybody has the opportunity to get ahold of this and make their caregiving lives a little bit easier. So thank you.
Tami Anastasia:
And again, thank you so much for having me. And to everybody out there, I always say when I end a webinar, I always say thank you for the love, thank you for the care, thank you for the support on behalf of myself and your loved one that you provide every single day, day in and day out. And please be sure to take a timeout and do something kind, gentle, and nurturing for yourself at least once a day. This is a horrendous journey and you count just as much as the person you're taking care of.
Valerie VanBooven RN BSN:
Oh, that is so nice. Oh, thank you so much for being here. You've just given everybody an awesome day ahead. So thank you very much. Woo, that's great.