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Advice From Your Advocates
Advice From Your Advocates
Essential Strategies for Dementia Caregivers: Learning to P.A.C.E. Yourself with author Tami Anastasia
In this conversation, Bob Mannor, an elder law attorney, interviews Tami Anastasia, a counselor with a dementia-focused counseling practice. They discuss the challenges faced by families dealing with dementia and how to navigate them.
Tami emphasizes the importance of educating families about dementia and its effects on the brain. She helps families understand that the behaviors exhibited by their loved ones with dementia are not intentional but a result of the disease. Tami also highlights the significance of identifying triggers for negative behaviors and finding ways to minimize them. Additionally, they discuss the difficulty of making decisions for parents with dementia and the need to involve them in the decision-making process.
The conversation focuses on the challenges faced by families dealing with dementia and the importance of effective communication and planning. The principal themes include decision-making, involving authority figures, understanding benefits, managing family dynamics, and the importance of self-care for caregivers. They also highlight the book 'Essential Strategies for the Dementia Caregiver: Learning to Pace Yourself' authored by guest, Tami Anastasia.
- Identifying triggers for negative behaviors can help families preemptively plan and minimize those behaviors.
- When making decisions for parents with dementia, it's important to involve them in the process and find ways to make them feel included and valued.
- Supporting caregivers and providing emotional guidance and care strategies are essential in helping them navigate the challenges of caring for a loved one with dementia.
- Understanding and accessing benefits, such as veterans benefits, is an important part of legal planning for individuals with dementia.
- Family dynamics can become more pronounced when dealing with dementia. It is important to navigate these dynamics and focus on the best interests of the person with dementia.
- Caregivers should prioritize self-care and seek support to avoid burnout and maintain their physical, mental, and emotional well-being.
Guest: Tami Anastasia
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
You're listening to Advice from your Advocates, a show where we provide elder law advice to professionals who work with the elderly and their families. Welcome back to Advice from your Advocates. I'm Bob Manor. I'm a nationally board certified elder law attorney in Michigan and we have what we call a dementia-focused practice, and so I'm really excited today that we have Tammy Anastasia as our guest. She also has a dementia-focused practice in counseling, so I'm really excited today that we have Tammy Anastasia as our guest. She also has a dementia-focused practice in counseling, and I've been following Tammy for a long time. She has some really great information. Welcome, tammy.
Speaker 2:Well, thank you, Bob, for having me. It's a pleasure to be here.
Speaker 1:So I appreciate you and all of the work that you do. Can you tell our audience a little bit more about you and what your background is?
Speaker 2:Sure. So I have a master's in counseling and I started a private practice in 1991 and focused a lot on wellness and over the years dementia and I had. My grandmother got diagnosed when I was in high school, college and back in the day they called it senility. We didn't even know what it was right. And now fast forward 20, 30 years later and I saw my father go through so much sadness and my grandmother was the most loving, kind person and it just changed her. We didn't even know who she was by the time she passed away.
Speaker 2:So by coincidence there was a gal in the area who wanted to retire and with my skill set she said would you like to take over my support group? And then I just changed my practice. The focus all dementia related supporting caregivers, family caregivers, all dementia-related supporting caregivers, family caregivers, the primary caregiver and I provide dementia guidance, emotional support, care strategies and counseling. And I will also work with people who've been early diagnosed with dementia, who are in the early stages, to talk about what it's like to have this diagnosis. And then I facilitate several caregiver support groups in the Bay Area. I'm out here in California and then also do a lot of different speaking events, educational events on the different topics related to dementia and caregiving.
Speaker 1:And so it's great that you have those speaking events and that's kind of how I heard about you or learned about you a couple of years ago now. But you're able potentially to do trainings, even virtually right, or to even do support groups and things like that. Virtually you don't have to be geographically within your area, correct?
Speaker 2:Right, you know COVID was hard. Lots and lots and lots of not so good things about COVID. But the one blessing for me was that now I can service, I can counsel people in any state because of the virtual as well, as I do hold a couple of support groups myself. Through my own practice I do them virtually as well, so that again I can have people from different states. So it's the next best thing. I used to do in-person and phone sessions.
Speaker 2:Now it's in-person, it's virtual and also phone sessions, but I like the virtual because I can still see that name, that face, and you can see, read the body language and just a different connection. But I think it's equally as powerful as if I was meeting them in person.
Speaker 1:Okay, that's so, you know. It's interesting, as you were talking about working with the families. I think it's so difficult for families when they've got a diagnosis of dementia because if they don't have that context, if they haven't worked in, you know, the healthcare field or even some folks in the healthcare field, it's just so difficult to take this person that you you know, might be your parent, might be your spouse, and you have these expectations. You have all of this history and then have this change, which is fairly dramatic at times. How do you advise families on this? How do you help them kind of wrap their head around how to interact with their loved one and how to deal with their own grief, as well as many other emotions, I imagine?
Speaker 2:Correct. There's a wealth of emotions and they fluctuate and a lot of the fluctuation is very much according to how the person is progressing and the behavioral and the cognitive changes. So typically a phone call will be my loved one has dementia and I don't know how to deal with this, or I don't know how to deal with that, or I don't know what to do with my anger. I don't know what to do with the grief and loss.
Speaker 2:So it really fluctuates according to what the needs are, and I'm pretty much whatever the need is. My goal when I work with somebody, whether I meet with them once or 30 times, it's to can I educate them, can can they learn, get more insights, more understanding, and then always try to equip them with strategies on how to deal with the cognitive and the behavioral changes, taking into account who the person was pre-dementia the relationship pre-dementia and now the relationship the person with dementia and the relationship with the person with dementia.
Speaker 1:So you know, I think that's a really important point that you just made is the relationship before, because a lot of times I've been working with families that have a loved one with dementia for 15 years or longer and the idea here is that a lot of times there is that emotional for lack of a better term baggage.
Speaker 1:In other words, it could be a parent that maybe you had a difficult relationship with, sometimes husband and wife. There's always going to be some challenges in any kind of marriage and so often I hear family that describe what's happening and then they'll say, oh, he's just being stubborn, oh, that's my mom just being stubborn. How do you help families kind of break through that to say, okay, this is different than just being stubborn, this is different than their you know, ability to rationalize and make good decisions? Because in my experience a lot of families really struggle with that and really have a difficult time moving beyond the history, all the things that led up to you know, whatever state that we're in, if it was 80 years of history of you know since they were born and all of that, how do you help families kind of move to the point where this is not the same relationship as it was before?
Speaker 2:Yeah, that's a great question and that's the bulk of my work is really educating them. When we get a diagnosis of dementia, you really have to educate people what dementia does to the brain. And we have that. Let's go back to the relationship pre-dementia. I can't tell you how many times people say my husband just won't cooperate or they refuse, and I have to remind them they may not be able to process the information, they may not remember the information. It's not that they're refusing intentionally. So we have to separate what was and you have these feelings and emotions from what was that can carry over into dementia. And, quite frankly, what I do try to do is sometimes I try to use the dementia to heal the past and now deal with the present.
Speaker 2:So a lot of it is really educating them, getting them to understand that if they're argumentative, if they're accusatory, if they're combative, it's now because they have a brain disease or brain damage.
Speaker 2:Their brain doesn't have that capacity to pre, preplan and figure out ways to manipulate.
Speaker 2:They're not intentionally trying to upset you and it's really understanding how dementia is attacking and affecting the brain. And these are behaviors now because of dementia, even though it may appear. But they're two different, very different. And when families, especially the caregiver, family, primary caregiver, sees that, it allows them to detach and not take personally what's being said and done and they learn to react differently, they learn to respond dementia friendly versus reactive and anger. Anger will still always be there because there's a lot of emotions associated with dementia, but it won't be as intense and won't be as frequent. But that education piece is what brings us over to the other side of now, relating to my loved one as a person with dementia. Rather than assuming they have all this pre-planning, premeditated uh stuff going on and you, you have to make that distinction, otherwise it will bring you so down and you will continue to engage and it will ignite and cause a lot of friction between you and your loved one that you're taking care of.
Speaker 1:You know, there's a couple of things there that I really want to highlight that you just said, and one of them is, you know, dealing with in the long-term care industry. They often would call it behaviors. So it could be, you know. Sometimes they call it sundowners, sometimes it's just aggressiveness, maybe wandering. You know, certain behaviors and what we found is that there are things that can be done to sort of lessen those behaviors. And I'm not talking about drugs. Obviously there's drugs and that's what the medical field tends to want to look at. But there's other things. I'm guessing that you could give advice to families on how to minimize those negative behaviors.
Speaker 2:Right, right. So what I try to do is get. All behaviors are a form of communication. Whether we like it or not, it's all a way of communicating a need and we have triggers. For as unpredictable as dementia can be, there can be what we call triggers, causes or patterns. So I'm going to help families see if we can figure those things out. It's things such as a word I used, a facial expression or pain or an unmet need, and if we can identify what some of those patterns are, then we can preemptively either plan for it or possibly prepare or get rid of the trigger altogether, which will now not trigger that behavior.
Speaker 2:So it does take a lot of observing and caregivers my family caregivers and my private practice they're so observant they don't know what to do with that information. So how can we use that information to educate them and I always say, to outsmart the dementia? How can we take that information to outsmart the dementia? Either by pre-planning and prepare for repetitive questions the same question over and over prepare and or circumvent the behavior by understanding what the pattern or the cause might be and prevent it from happening. So let me give you an example. There was a gentleman father just loved having his son come over. But every now and then the father would just kind of lose it like get out of my house, you don't belong here.
Speaker 2:So for about six weeks I just said, you know, let's just monitor and write down and see if we can find a pattern. Well, it turned out, every time his son wore red we got an adverse reaction. Well, he was in the military. So you can start to put the pieces together. He never wore red again over to the house and, believe it or not, those triggers. Now we don't have the son walking into a volatile situation because we could identify one of the triggers.
Speaker 1:That's amazing and that's kind of the point of the work that you do, which is that we really have to kind of take time and listen and really dig into the circumstances, because who would have in some kind of care setting? They are very busy and they probably don't have the time to just sit down and talk to the family and really dig into these things to figure out what those triggers are. I have a story that some of my listeners I'm sure heard me tell this story before. But we had a gentleman with the Lewy body dementia where we were representing the family, and with Lewy body, as you know, there's often some hallucinations, maybe some aggressiveness, things like that and so he had gotten to the point where he needed care outside of his home. It wasn't safe for him to be home with his wife anymore. It could have been dangerous for her he was a large man and if he got aggressive it could have been dangerous her, he was a large man and and if he got aggressive it could have been dangerous. And so but now we still have to protect the caregivers, right? Just because we're in a care setting doesn't mean that we can't and we don't want to. We didn't want him to be drugged so that he was sleeping all the time. We wanted to have him have the best quality of life possible.
Speaker 1:What the what the medical staff and the caregivers couldn't do is something that my staff was able to do, which was to sit down, talk to the family, get more information, kind of like you did with the discovering that it was the red shirt that caused the trigger.
Speaker 1:And what we found out was that he really loved old Western movies and whenever he had these behaviors, if we popped in an old VCR of an old Western movie, he immediately sat down, calmed down, and that would deal with that. So we were able to educate the staff, the caregivers hey, if there's ever a problem, there's a stack of tapes over here. We got this old VCR, pop it in and, and you know, direct him over to it. And it worked like a charm. And, yeah, he, he lived another several years after that and we never had any issue with him. You know being aggressive towards others because they we were able to learn what you know what was something that would calm them down, and that's something that I don't fault the medical staff for, because they, frankly, don't have enough time to do that kind of investigation, like you are able to do with families.
Speaker 2:Yeah, and I go for a deep dive. I have a counseling background, so I know the questions to ask, I know the patterns to look for. I don't ever assume I know the answers. I just go searching for all the information as much as possible to see if I can help put the pieces together, because ultimately that's what we're dealing with. You have this person that has a past and you know, as dementia progresses they may relive these old memories. So I'll go looking for what do we know about their past, their personality? So I'll go looking for what do we know about their past, their personality.
Speaker 2:But the flip side is equally as important. What are the things that bring them joy, what are the things that make them smile, what are the things that make them happy? And before we place someone into a care community, what I like to do is prepare my families as much as possible. This is the information we're going to want to give the care community. These are the things to be aware of. These are the things and we plot it out, I mean, to the very detail. This is the story we came up with what we're going to tell them, when we tell them, when we're going to move them. I mean, it's so fine tuned, at least in my practice, because of the very things you just shared, and that is any transition is a difficult transition.
Speaker 2:Any move is a transition, but we have two people involved. It's also equally heartbreaking for the family to have to move their loved one into a care community. So you're dealing with your loss and you're dealing with the sadness. It may be the first time you've ever lived alone and now I've also got to support my loved one. So the more information we can give the care community, the more prepared we are, the more knowledgeable we are everybody involved, the better and the easier the transition will be. No two transitions are ever the same and we also prepare for the transition not going well, so that the families have a realistic expectation of how do we manage this now if it goes sideways a little bit. But we have to provide the care communities also with that valuable information that you just shared to make this as well, make it as good as it possibly can be.
Speaker 1:You know, it occurs to me this is interesting that your job and my job isn't that dissimilar, because that is our goal is to try to make sure that we get in front of the problems. We can listen and deep dive, to get you know, to discover, and one of the things that we find and I know that I suspect that you often need to have these conversations with the family, just like I do which is the family often, especially if it's the children. Sometimes it's the spouse, but particularly if it's the children that are the ones that need to step up and start making some decisions, because the parent maybe isn't capable of that anymore, and so that's difficult, that's really difficult to treat your parent in such a way that they're not you know, you're not deferential to your parent. That's kind of how most of us were raised is we're deferential to our parents, and so the reality is I see this nearly every day of meeting with the family and they say well, I keep trying to convince my dad, to convince them you might, on any given day, be able to have that conversation, but if their memory is such where they don't remember what they had for breakfast and they don't necessarily even remember who you are. Sometimes it does not do any good to try to convince or use logic or reasoning, because they may not actually fully be able to reason anymore. But even if they can, if they have that time of lucidity, they will likely forget it.
Speaker 1:And so this is very frustrating for families because they say, okay, I met with a family earlier today and the conversation was okay mom and dad who both have dementia. In this particular case, you know, you really can't live alone anymore. It's not safe for you to live alone. We either need to bring somebody into the house or we need to go into a more protective setting. And apparently they had convinced them it was all set. And then, when the day came, dad said no and it was all over, and they backed off. And the problem with that is the way they described where mom and dad were at on their memory issues. There was no way that you're going to be able to get consistency where we say oh, yes, I remember now we decided we're going to move into independent living. That's not something that the families often can easily wrap their head around of. This isn't necessarily, unfortunately, about convincing someone, because even if you can convince them, it may change a week from now, or two weeks from now, or tomorrow or in 30 minutes.
Speaker 2:And that is a huge problem. And so you know, we've all been, we've all, most of us have been raised to respect your elders, to respect your parents, and you've got two different dynamics. You have spouse dynamics and then you have adult children and parent dynamics. And the adult children we reference them as being the sandwich generation.
Speaker 2:But, what happens is you're exactly right. We can have a lucid conversation, they agree, and then the families hold on to that and the problem is it's for that split second. And so we have to be again, outsmart the dementia. We have to present it in a way where we don't use reason and logic, but that we find a way to communicate with them that appeals to them, to make them feel they're part of the decision. But yet we're navigating it behind the scenes. But I see this all the time.
Speaker 2:I just did a speaking event the other day yesterday and the woman said oh my God, my husband's so mad at me. I said well, what happened? And she said well, is it possible? So they were cleaning the house. She took a lot of his things. He said no problem, they can go to the Goodwill. Well, she got home, you stole my things, you gave them away, and he's been upset ever since. And she says but we had this conversation. I go, it was fleeting. So I teach families okay, we don't clean anything in front of them, even if they agree, we don't remove anything.
Speaker 2:So when it comes to the legal stuff, we have to be strategic in how we can't convince them, but what we can do is make them feel a part of a plan that is beneficial for everybody. For example, scamming is a big problem.
Speaker 1:Absolutely.
Speaker 2:A lot of older. My parents, your parents, we don't want our money being taken by anybody older. My parents, your parents, we don't want our money being taken by anybody. So we might say you know what to protect our finances better or if anything should happen and make sure no stranger gets somehow we have to find ways to appeal to their sense of and then participate in it. But if we bank on them remembering and being supportive, oh my gosh, then there's so much conflict. And then it's that control issue and it's figuring out how to present what needs to be done very cleverly. We have to be very clever and very strategic.
Speaker 1:So in my practice that's something that we're always dealing with, because I want someone in the family to ask as many tough questions to me as they can. I want somebody to do their due diligence and ask very difficult, tough questions and really go through every scenario to make sure that they understand. But mom and dad maybe, if well, you know, if there's one of the parents with dementia, they're probably not capable of going through that level of detail because I have a lot of information to convey. One of the things that lawyers traditionally do is we only meet with the client. We don't meet with anybody who's not the client. Well, I try to look at it as my client is the elder. My client is the possibly likely frequently the person with dementia. That's who my loyalty goes to. Well, I also know if I go through all the details I need to go through with them, they're going to get overwhelmed.
Speaker 2:They're going to get scared.
Speaker 1:They're going to be, frightened, and so I want to have the family understand and ask all the tough questions. But when I'm talking to the person with dementia, we typically narrow it down to things like would we rather keep decision making in the family? Do we want to keep the government and the courts out of family matters? So keep family matters in the family, and that is typically something that most folks can understand. Or if they were a veteran and sometimes we're dealing with veterans benefits, things like that to say, well, you, you know, you served our country, you earned this. We want to make sure that those benefits that you earned way, that you get the benefits you're entitled to because of the service you provided to our country. But you know a lot of the sort of working around it to say, okay, they need to understand some concept of it, but not as much detail as hopefully the kids would want to know.
Speaker 2:Yep, and you bring up a great point. Sometimes I will encourage the families to bring in an authority figure, let's say the attorney. Like yourself, you know there are still older. Our older generation still has a respect for authority.
Speaker 2:Maybe it's a medical doctor, maybe it's an attorney like yourself, maybe it's a financial planner, but sometimes that is what we do because they'll listen to you and and they know you have their best interest at heart.
Speaker 2:So there's many different strategic ways to do it, but you're absolutely right. You know we can't go into the fine, fine, fine detail depending on how advanced the dementia is. Right, so it's, you're doing a beautiful job. I mean, it's just, I love hearing these stories because we're helping the families, we're assisting the families to get things done that need to be done, that protect everybody involved, whereas, you know, when we're dealing with families and people living with dementia, they don't know what. They don't know because of the impaired brain. So when I hear you talk, I think, oh my gosh, it's beautiful what you're doing, because that is how we can get things done. We have to scale back the detail for people living with dementia because the more we talk, like I tell people, the less we say the better things, and then who knows where their mind's going to take it, they misperceive it, they start distrusting you. So it's beautiful to hear how you're handling that, because it's spot on right the less we say, the better.
Speaker 1:And one of the things that I always uh offer uh to the family is to say so, let's say we're dealing with something like, um, driving or taking, you know, making sure that someone's not driving. I always say okay, don't be the bad guy, son or daughter, you don't need to be the bad guy. Make me the bad guy, make the doctor the bad guy. We usually make the doctor but some other professional, and when it comes up we say, oh, it's not me, it's the doctor said you can't drive, it's the lawyer says you can't drive because of the liability, you know the liability associated with it or you know whatever it is.
Speaker 1:But I have no problem if I need to be. You know every case is going to be a little bit different, every family dynamics is going to be a bit different, but I often want to give a rationale to the family so that they don't have to be the one that took the car keys away. Maybe they physically did, but the blame can go on some outside or outside of the family.
Speaker 2:That's exactly right, that's exactly right. That's exactly right. And I'm also the person to blame. Put it on me right, Because the caregiver is already getting dumped on enough. The caregiver is to blame for everything that's wrong in their life and, you know, the caregiver is doing the best they can to support them, to provide the best care, the best love, and then their loved ones just grilling them and I think, oh my God, with driving and some other decisions that have to be made, we don't want you to be the bad guy. And that's exactly. We deflect it right.
Speaker 2:So, then the caregiver could just normalize and validate. I'm so sorry this happened to you, but they aren't the bad guy. Let the DMV be the bad guy, you be the bad guy, me be the bad guy, but I really want to protect family caregivers. They deal with so much dynamically. What can we circumvent and figure out another way to deal with it so that they don't quote unquote, become the bad guy for every situation and they struggle with caregiver guilt as it is?
Speaker 2:So, why not deflect it and let's let somebody else be the bad guy and take this off your plate, because we're going to have to pick up the pieces anyway? But I don't want the the person living with dementia to blame. They'll blame them anyway. But how much better me as the caregiver, knowing. Oh, somebody else dealt with this and it's not me. I just have to pick up the.
Speaker 1:I want to ask you more about that family dynamic in a second, but I want to say that I really enjoyed this book that you wrote. It's Dementia Caregiver, Learning to Pace Yourself, and Pace has a specific meaning for you. But it was an excellent book. I really enjoyed it. Before we get into the book, I have one last topical question, which is what about those families Dealing with this as difficult? So the family dynamics where the family doesn't agree, so that you know sometimes it's the caregiver, the child, sometimes it's the, you know the child, who's nearby, who's providing a lot of support and help for the parent, and then the out of town or out of state family. How do you have any advice for dealing with that dynamic which comes up so often, where there becomes conflict within the family? I think often because there's not an understanding or there's a bit of denial about what mom and dad need. So any advice on that?
Speaker 2:I'm glad you brought that up. So family dynamics I deal a lot with and in my private practice I primarily work with the primary caregiver and what everybody needs to sort of be aware of is family dynamics come to the surface when dementia, somebody has a dementia or when there's a crisis, and unfortunately, a lot of the dynamics have been in place since they were kids. We have the one who's the backseat driver, we have the one that is uneducated but thinks they know it all. We have the one that's very greedy, doesn't want to spend the money because there'll be more money for them when the parent passes away. So I'm going to be very honest. I take care of my primary caregiver and I say I get a lay of the land of all the players. We can invite them to join us in putting a plan together, but we also put a plan in without the players, because my family caregiver, who's the primary caregiver, doesn't have the energy to try to convince somebody in the family who's always been this way. We invite them. If they're not going to participate, don't want to participate, we kind of outsmart them too, because dynamically we need to take care of the person who has dementia. We have the dynamics in the family. So I bring to the surface these are the dynamics. Have the dynamics in the family? So I bring to the surface these are the dynamics. How are we going to? What plan are we going to put forward?
Speaker 2:So a lot of times it's changing the expectations of the family members, not so much trying to convince them. We're going to invite them, we want them to be a part of it. But, as typically happens, they all have their own issues. So we're going to put a plan in place regardless and make sure that everything is in place that needs to be in place. And a common one is oh, I talked to dad, or I talked to mom and she sounds great on the phone and I said, well, let's move them there for a week and let's have them experience it.
Speaker 2:And then I hate to say it, this is a horrible thing to say, but greed is a big issue. Yeah, and there are some family members who say, no, mom doesn't need that, mom doesn't need this. But truthfully, mom needs it. You're not involved in the care, so we'll do what has to be done to take care of them. I always want my family caregiver. I how can I say this? I always want them to be aware of the choices, but we may not have them participate in the choices because we can't get done what needs to be done. So we're going to find other ways to support the family caregiver who's the primary caregiver, as well as what needs to be done in the best interest of the parent or the person living with dementia.
Speaker 1:But oh, they come flooding to the surface the dynamics, yeah, and I think you know you're right, of course that there are a certain percentage of family members that are coming in with the wrong motives. In my experience, a good amount of time though it's the family each has their own idea of what is the right thing to do, and they each have, you know, they're getting input. I always say I call it the barbershop advice. I was in the barbershop one day a few years ago, and you know I try not to interrupt other people's conversations, but the gentleman came in and he was, you know, talking to the barber, which, at men's barber shops, that's something that people do They'll just come in and chat with the barbers. So they were chatting and they said well, I don't know what we're going to do. My mom can't live alone anymore. I'm not sure how we're going to afford all this. And the barber said oh, I'll tell you what to do. He said well, all you're going to do is you're going to take all the money out of her account, put it in your account. And I had to interrupt him at that point and I said no, really, that's a really bad idea. That's not going to work. That's going to cause much more problems than the value that you're going to get out of it.
Speaker 1:And I usually don't try to interrupt other people's conversations, but I feel like that's where a lot of the confusion and sometimes conflict comes from is it's a lack of information, a lack of not knowing what the options are.
Speaker 1:And, like you say, I thought it was a great answer to say let's try to get the family together, let's sit down, try to come up with a plan together, try to involve everybody in the plan. Of course, some people are going to be more involved in the plan than others, but at least that's a possibility. Sometimes it's just a matter of everybody's getting somebody in their ear. Everybody's getting different information. People watched a movie, a Tom Hanks movie or something, and they have it in their head that this is what reality is. And if we just get everybody around a table that's my favorite thing to do in these types of situations and then we'll see if somebody's being greedy, I mean, it'll come out if what the real motive is being greedy or some other bad motive. But sometimes it's simply that they just got. You know, there's so much bad information when it comes to this type of planning.
Speaker 2:Well, and you have denial and and for people who are in denial, it is bliss for those people who are not in denial. So there's just so many dynamics, you know, and in my case, in my private practice, the one who's usually the responsible child is the one who ends up burdening and taking all of the responsibility, and the family's used to that person stepping up. And now mom or dad has dementia, right, and then you also have the parents. You know, our dad has dementia, right. And then you also have the parents. You know, what did they leave to whom? And there's just so many dynamics. My first goal is always let's see if your siblings want to participate.
Speaker 2:We can invite them, we have to give them, we have to hear of their voice, we have to hear what their thoughts are. But we also have to keep in mind that everybody is going to perceive it differently and either they join us or they don't. That's a choice they're going to make, but we still have to put in place what needs to be put in place. But for the family caregiver I'm going to speak on their behalf it is really difficult and very upsetting when I'm the one taking care of mom and dad and then they live miles away or they don't come and visit and they downplay everything.
Speaker 2:It dismisses what the primary caregiver is going through, and we have to acknowledge what the primary caregiver is going through. We have to. They're the ones that are in the trenches, they're the ones that are doing this, and so I am going to do what's in the best interest of the family caregiver, if it means we need to communicate this to everybody, but let's not have expectations and depend on these people who are not dependable on these people who are not dependable.
Speaker 1:I think that's 100% right, and that's the thing is. I think most people have no idea how difficult it is. We often have. You know, we always prefer people that are planning ahead or planning in a non-crisis situation, but a good portion of the people that come see us it's a crisis, and so they've been to the hospital, maybe they've been to rehab for a few weeks and now the thought is okay, what are we going to do now? And often the families say oh well, we're just going to take turns and we're going to bring mom home and we're going to take turns.
Speaker 2:And.
Speaker 1:I say, okay, I can see that working, because your sister's flown in from California and you're going to take some days off of work and things like that. I can see that working for a week. Maybe I can see it working for two weeks. It is, first of all, I think until you do it, you're going to be shocked at how difficult it is. And number two is that's probably not sustainable for six months, six years, 10 years, you know, whatever it turns out to be, and so it's something that it's really difficult, because people in crisis often are just trying to say, well, how do we get through the next five days? And really that's the time to start thinking about. Okay, we can't just think about five days. We got to think about the foreseeable future here.
Speaker 2:Yeah, yeah, exactly. And let me go on the other side of the coin. And there are some families. It's beautiful to watch, it's beautiful they all come together. I don't want to insinuate every family, but there are underlying dynamics that come to the surface and we have to play with those dynamics and again figure out how we're going to navigate this, given who the players are in the family and I have this phrase right we have fantasy family and we have reality family.
Speaker 2:And so we've got to sort out fantasy family from reality family, because we're going to have to deal with reality family. But we can invite. We can invite. But whether they participate or not is going to be a choice on the other players Right. But whether they participate or not is going to be a choice on the other players, right.
Speaker 2:But when it is magical, when I work with a family and it works out great, it just it makes my heart sing, right. But I also know that the norm is we have a lot of different people and family dynamics that come to the surface. How do we juggle it? And that's what we're really trying to do On top of now trying to navigate caring for a loved one with dementia, which is so time intensive anyway, and then I've got to try to figure this out with the siblings on the side. So it's a lot, it's very overwhelming and it's a lot for the caregiver to deal with. But I'll do whatever it takes to help support the caregiver and create what we need to create. That's in the best interest of the person living with dementia, and I'm going to say my caregiver, because they're in the trenches.
Speaker 1:Let's talk a little bit more about your book. It's an excellent book Essential Strategies for the Dementia Caregiver Learning to PACE Yourself and I believe you probably came up with that acronym for PACE why don't you tell us a little bit more about the book and what you mean by that?
Speaker 2:Right. So prior to COVID I had put a manuscript together and I just started writing down all the things that reoccur, that I hear in my private practice, that I hear in my support groups that I'm asked when I do speaking events. So I had this manuscript for about two, three years, but I never had time to finish it. Well, covid hit, so I thought now's the time to get the book published. So the book is really truly based on what I hear in my private practice constantly, again the support groups, and there's certain things that kept coming up. And one thing that's kept coming up is my loved one gets a diagnosis of dementia. We leave the office and now what do we do? And I thought, wow, let me educate people on the behavioral changes, the cognitive changes, the relationship changes, the cognitive changes, the relationship changes.
Speaker 2:So I walk people through the beginning all the way to the end of life journey on how to deal with, what to expect about what's going to happen to your loved one, what's going to happen to the relationship, and it's chock full of strategies. The PACE acronym came up because we don't know how long this journey is going to take. And they come out of the gate and they're depleted, you know, they don't know how to deal with repetitive questions, how do I deal with the accusations and how do I deal with the uncooperativeness? And I thought, oh my God, so many of my families that I work with are so exhausted already and I think this may be a five, six, seven year journey. So the concept PACE is how to survive this journey without it being at the expense of your physical, mental and emotional well-being, and that's how PACE evolved. And that's how PACE evolved.
Speaker 1:Yeah, Excellent, and so I really appreciate, Tammy, you being on the podcast today. Excellent information. Like I said, I've been following you and receiving your emails and other information for a few years now. How, if our listeners want to get more information about you or get the book anything else what's the best way to interact with you?
Speaker 2:Well, first let me say thank you, bob, for having me as a guesttammyanastasiacom. That's T-A-M-M-I-A-N-A-S-T-A-S-I-Acom, and the book you can purchase on Amazon and again, it's Essential Strategies for the Dementia Caregiver Learning to Pace Yourself.
Speaker 1:And I just want to highlight that it's tammyAnastasiacom, but Tammy is not the traditional spelling of Tammy, it is T-A-M-I, so just I wanted to I know you said it, I just wanted to highlight it for anybody that was listening Get more information about all the great work that you do. So thank you so much for being with us today and if you've enjoyed this podcast, don't forget to subscribe for being with us today and if you've enjoyed this podcast, don't forget to subscribe. You can subscribe at any of the places where he listens to podcasts or you can go to our website at ManorLawGroupcom. Thank you, tammy.
Speaker 2:Thank you, bob, and thank you for everything you do.
Speaker 1:Thanks for listening. To learn more, visit manorlawgroupcom.
