Believing in Yourself as a Caregiver with Tami Anastasia

My brain thinks I'm 20 years old. I remember what we looked like when we got married and you're now 80 years old, and I don't recognize you. That's one of the reasons why they don't recognize their partner. Or they introduced them as their boyfriend. That's why they start flirting and they start doing things. I have a gal in my support group who says,"I'm mortified by my father's behavior. He's flirting with everybody, and it's so inappropriate." And I said, Well, let me ask you this when your father was young, did he kind of think he was a suave, cool guy? She's oh my god, how did you know that? This gentleman now who's 85 who has dementia is flirting because he thinks he's 25-30 years old.

Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net. Today, I'm so thrilled to announce my guest Tami Anastasia. Tami is a dementia consultant who I met at a aging Life Care Association Conference, and did such a great job educating us as professionals on dementia that I thought I'd bring her onto the show. Tami is an educator for professionals like myself, but also for families. So Tami without further ado, welcome to the show. It's great to have you.

who also care for people living with dementia. And I support several caregiver support groups throughout the Northern California Bay Area. I'm in the San Jose area. It's a pleasure of being invited. And I look forward to doing the podcast with you.

Well, it's a pleasure to have you and I'm so

There's a lot of mixed feelings and emotions. glad you mentioned your book, essential strategies for the dementia caregiver because I bought it at the conference and started reading it. And I just want to touch on a couple of things that I found particularly interesting in your book. You talk about pacing yourself that this is generally a long road. Yes. As a caregiver, right. And how there's a lot of frustration involved. Absolutely.

Yes, a lot of mixed feelings and emotions. And one of them oftentimes is frustration irritability, which we hear so much in support group. And one thing that you say, and you have a whole thing on this as patience. Yes. And you said, which I found really interesting. You said patience is not inherent. It's a learned skill. Yes. Patience is a learned skill. That is tremendous. Because we caregivers from all my groups, do they come feeling so guilty, that they lose their patience? Patience? Yeah. And what you're saying is like, we're not inherently patient. Right? You have to learn to be patient,

it is a learned skill. Come out of the womb with all this bundle of patience, right?

And so to lose your patients often, it's okay. Like, that's normal. That is what we hear all the time. And that's okay. And you give these strategies to build patience to learn patience, right, which I think is so simple, but no one knows that. In my mind, no one knows that like we've been with this person for however long. We love them, whoever they're, they're our mother or father, our spouse like we should just be patient with. No it doesn't. It doesn't happen like that.

No, and Dementia is a whole different ballgame to boot. You bring up a really good point and that is we do have this relationship with this person pre dementia. And when a person gets dementia, the dynamics change although the person with dementia can still stay and do Things that might push your buttons. But it's different once we get a diagnosis of dementia, often what the person says does they have absolutely no control over. But yet we have these residual feelings of this relationship, we had pre dementia. And so then it gets kind of muddy. Like now they're doing saying things intentionally to hurt my feelings, or they're doing this just to get on my nerves. And the reality is no, when clients share with me, my private clients, or in my support group, or when I do educational events, when they share with me their loved ones behavior, it's normal behavior for a person with dementia. And so part of my work is sorting out what was what, then is different than what is now. And so patience. One of the things in my book that I recommend is that you come up with what I call a dementia mantra. Because one of the things we do is we react to the minute we take something personal, we react to it. And so I can help people slow down that reaction by detaching, maybe we'll talk about the four ds of dementia care by detaching, then I respond reflectively rather than reacting. And so one of the things I encourage people to do is to realize dementia is causing my loved one, to behave this way. And that's the mantra for many people, dementia is causing my loved one to behave this way. So it allows me to step back, not take it personally, and now respond differently because my loved ones brain now is impaired. And that is a very difficult adjustment to make, to truly believe this high functioning smart, brilliant, hard worker. Now all of a sudden, can't put two sentences together can't remember what they had for breakfast, doesn't know how to tie their shoes, having incontinent bathing toileting issues, it's really difficult to wrap your head around. My loved one is now a different person, because of the impairment in their brain and us wanting to hold on so tightly to who they were. And it's a real, like you mentioned, it's a struggle. There's frustration, but there's also a lot of sadness and grief.

Yeah, absolutely. And I'm so glad you brought up the mantra for people to keep that in mind. This is dementia, this is dementia, this is not the circumvention, this is dementia, like just keep saying that. Right.

And dementia is why you're in the position

it's exactly what you said trial and error is you're in and dementia is responsible for what's happening to your loved one. And what just breaks my heart to know and dementia is responsible for what you and your loved one are going through. And to walk away and be so judgmental of yourself, be so critical of yourself, and to have this enormous guilt. And you're not responsible for what's happening. You're just trying to figure it out. And it's trial and error. And rather than think of what you've done, as wrong, rather be open to allowing mistakes to teach you what you can do differently. And a lot of times family caregivers will just say to me why tried it, it didn't work? Well, I want to know why it didn't work. Because if I know why it didn't work. I can help you understand and probably figure out what will work. But we have to learn from what doesn't work. And then caregivers walk away and they feel so horrible about themselves. So I kind of feel like my mission on this planet is to help people believe more in themselves. And this journey is one opportunity to believe more in yourself because you're in the caregiver is it and they need to believe in themselves. No, they're taking wonderful care and that they're loving. And yes, you're gonna lose your temper and yes, you're going to be impatient. But let's look at what caused it. How can we let our feelings and emotions equip us better? In my book, I talk about asking three questions. Allow your feelings and emotions to benefit you rather than utilize all this precious energy because you're being judgmental and critical. Ask yourself three questions. What are my feelings and emotions trying to tell me? What is causing me to feel this way? And what will I have to do differently? And that is so empowering. That if you can ask yourself those three questions, I'd rather you do that and beat yourself up and do a number on yourself. Because we're dementia's the journey where you all about trial and error. Right? Yes. Trying something learn by doing. I wish I could tell you, we can give you a playbook and here's everything and it's going to work perfectly like, well here support group members say, Oh, well, I brought my husband to adult daycare and he didn't like it. So crossing for everybody. It doesn't work that way, you know, out that idea.

Yeah, yeah. Other ways. There are strategies we can implement exactly, exactly.

Like one, one support group member, her husband always was the leader of their kids Cub Scouts. So she said to him, You know what? This is a group of guys. They've all been leaders of Cub Scouts. So they're just their past leaders, and you're gonna get together with them. Yeah, talk about those days. Yep. Willingly. Yep. That's what he thinks it is. It's perfect.

Yeah, a lot of how to deal with a person with dementia is figuring out ways to present things, to do things in a way that appeals to them. And there are certain words that we have to avoid and telling a person with dementia they need help, will most likely not be received very well. So we have to find other ways of communicating to them. So that we inspire them to want to do things because of how it will be presented and approach it. So I love that story. Because that's what we do. It's getting together with the guys and Cub Scouts. He will relate to that. And I think the other thing to keep in mind, that's super important. Just because I have dementia, I still need to have a sense of purpose, I still need to feel purposeful. And I have this phrase, invite instead of insist invite them and make them feel confident them make them feel important. You're so good at what you rake the leaves, or I really need help with this. And we have to find what that task is, the activity has to align with the ability they're capable of. If it's too hard, or it's too simple, it's finding that that right balance between what they can do. And then again, giving them that sense of purpose that is critical. And I'll know when they're not feeling a sense of purpose, because they'll start saying things like, you know, I want to die, the person with dementia will say I'm sorry, I'm such a burden. I'm a lump on the log, or I'm defective. I also work with people with dementia early on, and counsel with them so they can tell me how they feel and things like that. I hear that frequently.

Sure. They are depressed. What's wrong with my brain?

That's right. That's right. Now I'm going to bring up an example. So I was asked to go and do an assessment on a gentleman at a daycare program out here in San Jose, where I live. So I go out to see him such a lovely guy, 62 years old, advanced dementia, right? So I was talking with him. And he just looked at me and he just said, I have this problem with my brain. And I said you do? and he goes Yeah, you know, I just don't remember things like I used to. And I said, that happens to you too. And he looks at me. And I said sometimes I forget things. And it can be very, very frustrating. So I'm really glad to know that happens to you too. And he had this beaming smile. And he said, Thank you so much. I don't feel like it's just me, because I know it happens to you too. Right? And we have to normalize it because they do feel deep deep down inside. I do think they they know something's wrong, whatever we can do to normalize it. But we also have to normalize it for the caregiver to Yes, you are going to get frustrated, you are going to get angry, you are going to lose your temper. We just want to minimize the frequency and the intensity. But it's going to happen because they're your human.

Right, absolutely. And detaching yourself a little bit standing at arm's length a little bit. Oh, helps a lot not taking things. So personally. You're absolutely right.

Yeah. And understanding what your triggers are. That's another thing I do a lot with clients and in my support group and is understanding what your triggers are. Because you're going to have triggers. We have a relationship with our loved one. So we want to understand your triggers. So I had a client and her mother was very controlling when she was growing up. So she moved away from her mother for that reason. Mom now gets dementia she moves back in and moves back into mom's home. Well, people with dementia often want to know where are you going when you coming back? How long are you going to be gone? They asked those questions. The daughter, I was working with the daughter and she just said my mom is just starting to behave the same way when I was 18 years old asking me all these questions. And so I said okay, this is your trigger. It's pushing all these buttons was when your mom was controlling. I said, But now your mother has dementia, that's normal behavior for a person with dementia. So what we did is we were able to identify what the triggers were we process those. But now we have two or three responses interchangeably that she can use. So every time mom says, Where are you going? When you coming back? How long are you going to be gone? We've equipped her now, the same also applies to understanding what the person with dementia, what their triggers can be as well. That's super, super important too. Because we're as unpredictable as dementia is, there are sometimes triggers or causes or patterns. And when we can figure that out, then we can preemptively either circumvent it, or we're going to know how to defuse it, but we plan for it, to see how we can better handle the situation and or avoid it altogether if possible.

Yeah, that's great. It makes me think of a support group member example also, who said, the minute his wife was diagnosed with dementia, she did know something was wrong, and it will need her anxious. And so just opening her eyes in the morning, she felt anxious. So imagine if a daughter is getting dressed and ready to go somewhere. Already her mother is thinking, that makes me nervous. Now you're leaving me? I'm going to be alone. When are you coming back? Where to me? Yeah, absolutely. So everyone knows the signs of leaving. Right? She's getting ready to go. Yeah. And everyone knows the signs of oh, I'm being left. That makes me worried. Yeah. I feel like I need you here for reassurance. I mean, subconsciously, yeah, somebody ever reassurance to ya pictures, but probably the doctor does all day.

And this is the thing too, is people with dementia, their whole world has changed. What was familiar is no longer familiar. We often hear I want to go home, I want to go home. And they're in the home they've lived in for 40-50 years, but the home they're referencing could be a home from 60 years ago, when they were in childhood. Or I look at home as a metaphor. What that also tells me is that the home is I need something familiar. I'm looking for something familiar, home is very comforting. Home, it represents safety, and independence to some degree. So home we take literally, we have to look at metaphorically, what might they be communicating to us. But I will say a common theme that I do see and hear from the person with dementia is this unbelievable fear that I'm going to be left alone. Because my world I'm dependent on you. And this is the catch 22 The caregiver gets the worst of it, right? Everyone gets the worst your loved one goes out to in public and they're polite, or they're talking to another family member, and they're polite, and the caregiver gets the brunt of everything, which there and in and of itself can be incredibly frustrating. And yet just know that's just the mental because I know this is going to sound kind of weird, but they take it out on the person that they feel the safest with the one who's caring for them the most, because you're with them the most. So I think you are absolutely correct that way down deep deep down inside. For the person with dementia, there is tremendous fear. And I'm hanging on to you for dear life. And you're going to go away, or you're going to come back. Now you have also what you have to consider is we all have a past. And that's going to be even more true for someone who was abandoned as a child. So now we have abandonment issues, which often surface is these past quote unquote, either personality traits, or these past events that they lived through at one time? They're going to relive them as though they're happening today. So that's super, super important to remember as well.

Yeah, and I would imagine that's why we see so much shadowing behavior where a person just dumped the hip joint at the hip. I can't go to the bathroom without my wife being right there. Yeah, bump into her in the kitchen when I turn around to get something.

Yeah, yeah, it's exhausting. I had a caregiver who joined one of my support groups. And for one hour, she stopped in the bathroom sitting on the toilet seat, doing the Zoom support, and then we could hear him knocking on the door. But what are you doing with me now? What are you doing in there and she put it on mute and she'd say, I'll be out in a few minutes. I'm going to the bathroom.

Yeah, I have one in his car, turns in from his car because that's the only way he can get a break and we're smiling but this is really hard for people. Yeah, absolutely to be shadowed and followed all day. Yeah, to get a break from the person and you love this person. Yeah. But you need a breath. Yeah. Good.

Yeah. All right, this road is a tough road. It's a challenging road, I think would really emotionally that also is super difficult for caregivers, the care partner is we have to make decisions that are in their best interest and that are in your best interest. And may mean we have to do things that go against what their wishes are, I get a lot of private clients that say, Well, I want to keep my loved one at home. Well, if dementia will allow it great. But if dementia doesn't allow it, we're going to have to move or we're going to have to bring in 24 hour care. And I would say that's probably one of the most challenging, difficult decisions that caregivers face. At some point, you either bring in care, or we have to move them not because the caregiver is failing, not because the care partner is letting their loved one down. But because dementia demands more care than one person can provide, and dementia demands it. And how do we help ease that painful decision for caregivers or the care partners, because you're the sole decision maker, and you don't want to go against your loved ones wishes, then you don't want to, quote unquote, lie to your loved one. And yet some of the most comforting, some of the best things we can do for our loved one is to do exactly what is necessary. And just because they don't understand, just because it goes against their wishes doesn't mean you're doing something wrong. It's an extension of love. It's an extension of care and compassion and kindness. But caregivers have a very difficult time making those decisions. And how do we help them I knew it said,

when we spoke previously, you have said people don't want to be inconvenienced, like they want to be able to kind of go along in their life, the way they always have in their marriage and their day, just the way they always have. And then appears dementia, this totally unwanted diagnosis. That's a complete inconvenience to your plan.

Oh, it's turned your world upside down. So sometimes what is very hard, is we'll use an example of a husband and a wife. And the husband gets diagnosed with dementia and is young. And the wife is the breadwinner, the wife brings home the money and the wife needs to work. But we need to make accommodations for the husband. And the wife doesn't want to do that. And so what happens is the husband is the with dementia is at home, there's no structure and he's floundering. And when they're floundering like that, they end up being more work for the care partner, because they become more needy and more dependent. Versus if we have structure. And if we can get them to a day program. Well, we can bring in what we call companion care and give you that right, right. And I think that's the conflict for the care partner the caregiver is how do I get my needs met? And yet, I have to meet my loved ones needs and make some decisions on their behalf that are in their best interest. And I think that's where the conflict? How do we do that? We need to do it, how do we do it and make it less conflicting for the care partner and give them permission? If we change our perspective, or we change what we say to ourselves, if we have a better understanding of dementia, then it opens the door for me to feel more confident in the decisions I make. Because it's about dementia. And I'm not at fault your loved ones not at fault. It's what we need to do because of what dementia is doing to the brain. What the methods doing to the person.

Absolutely. And kind of going back to what you said before, which is if you don't say the word help, right, because no one wants to need help. No one needs that we don't need help in this life. If you say support, yep, since here to support us, I need this support. Maybe you need a little support, that it's much easier to bring in a person to help support us. Yeah. And to help us Yeah, yeah. To help support but to support us, right. To help us. You think about the wife could remain at work. If the husband had a little bit of support at home a caregiver perhaps who drives neighbor can be you know, yeah, we want to work with someone who drives who could take them. Walk could take them to the park and take them out for lunch? Yes. Doesn't have to look like a daycare center. That's exactly right. A companion a friend,

often when we introduce bringing care into the home, we're very strategic and how we introduce things and again, how we approach the person with dementia. My goal is what's the language? How can we approach them in a way that's going to appeal to them, rather than turn them off? Because the number one thing that a person with dementia is going to say, when you ask an open ended question is going to be no, no, no, no, I don't know. Because in their mind, they don't need help. They don't need help. Exactly.

I have a problem, I would you bring someone to help me with my problems when I don't have.

When I do speaking events, we all have capacity. And one of the first things I ask people is, how many of you want to be told you need help? We don't have to have dementia to not want to be told we don't want help. Right, right. is worse, if we're going to take that approach with a person with dementia and tell them they need help? Oh, no. So what I'm saying is universally, none of us like to be told we need help. So we might as well try to avoid that. And we do have to be pretty strategic and how we introduce things to our loved ones living with dementia. And again, it might take some trial and error, but we will figure it out. But I there are just some certain things that we try to avoid. We avoid arguing with them, avoid correcting them over explaining, the more you try to rationalize, the more you're gonna go down this river, and it opens the door for the dementia person to refuse it even more, or argue with you, because you're telling me something I don't believe. And people living with dementia, believe what their brain tells them believes. So when a person with dementia is argumentative, they're defending their thinking in the same way we would defend our thinking. Every single one of us has a belief, a firm belief in something firm belief in something. And if I come along, and I start challenging you on that belief, and I tried telling you that you're wrong and thinking that way or that it's incorrect. How are you going to feel about me? Not so good. Right? Yeah, you're gonna, I'm gonna lose so much credibility. Right. So it's the same for a person with dementia. The problem with the person with dementia is their thinking is irrational now, because I have a brain that's impaired. I'm going to say things that are incorrect. I might say things that are not true. The brain confabulate information gets cross reference, right? And they have no control over that. So when I tried to convince you, oh, no, that's not true. That never happened. You got to do it this way. Unless their safety unless there's a safety issue, it's okay to let them think that the sky is purple, if they want to think the sky is purple is okay, let them go to bed with their shoes on. If it means it's going to be less of a conflict, because really, at some point, we got to pick our battles. The person with dementia is argumentative, because they're protecting their thinking. They're not argumentative, because they want to be difficult. They're defending their thinking in the same way. You would defend your thinking if I challenged a firm belief that you have. Right.

Interesting. You were saying also that if the hallmark of dementia is losing your short term memory, yeah. Then your thinking is how you were 50 years ago, when you were agile, young working? Yeah. If you're thinking that's who you are now, yes, you absolutely don't need help. And you for sure can still keep driving, and why would anyone think otherwise?

Exactly. And it's often why I don't recognize my wife or my husband. Because my brain thinks I'm 20 years old. I remember what we looked like when we got married, and you're now 80 years old, and I don't recognize you, right. That's one of the reasons why they don't recognize their partner. Or they introduce them as their boyfriend. Yeah, yeah. That's why they start flirting and they start doing things because I had a gallon my support. I'm mortified by my father's behavior. He's flirting with everybody. And it's so inappropriate. And I said, Well, let me ask you this when your father was young, did he kind of think he was a suave, really cool guy. She's oh my god, how did you know that? So this gentleman now who's 85 who has dementia is flirting because he thinks he's 25-30 years old. Right.

And he might be flirting with her.

Yeah. Oh, yeah. Yeah, very good point. And she was just yeah, she actually he did. and just disgusted by it. Of course, again, what dementia does is just profoundly, not only interesting, but it's mind boggling, mind boggling. But what I want everybody to know is we with help can get you through this. And we can have a meaningful relationship with our person with dementia. And my goal is to not have people get through this journey, and it's at the expense of their own physical, mental and emotional well being. My goal is to help you make this journey to the best of your ability without it being at the expense of your physical, mental and emotional well being. It can happen, we can make it happen, it just requires us changing our mindset as well. And in order to do that, we have to grieve the loss of what was grieve the loss of what we what the future looked like. And now truly how do I embrace this person with dementia and find and develop a meaningful connection on their level? And yet, the caregivers needs are equally as important as the person they're taking care of? And how do we help the caregivers meet their needs as well, because their needs aren't going to be met by this their loved one anymore. So we have to find other ways to support the caregiver and get their needs met. So it's not done at the expense again, of their physical, mental and emotional well being.

Yeah, really good point. As we have seen, caregivers get sick. We have seen caregivers blood pressure skyrocket. Yeah, we've seen caregivers. I mean, worse, right? Have strokes.

Yeah. And the percentage of caregivers who pass away before their loved ones, this startling, we do these things. Because we care about the caregiver, we care about you. And what can we do to help make this journey better for you? As well as how can we support the person now who has dementia and find ways of relating to them in the way that is needed, which requires certain things that the caregiver has to do to provide the best care for their loved one, which goes back to what we talked about earlier? Sometimes it's doing things that go against what their wishes are. But we need to do that, because of what dementia demands in terms of care,

Dementia does demand demands more than any of us are humanly possibly none of us can do this on our own.

I really encourage caregivers to tell me what do you not want to do? What do you not like to do? What can you not do? And then let's find the resources to support you. And then we get stuck. Because why don't want to make my loved one upset? I don't want to get them angry. And okay, well, let's figure out a way then that we bring in what is necessary, and we do things for you to help you. Let's figure out how we can do that. And again, it's how we approach them, what language would appeal to them. And we don't make it about the person with dementia. We make it about us keep the focus on us what we need to do for ourselves.

Yeah, really good point. Just the other day, in my support group. Husband said his wife would not let him cut her nails or wash her hair. Yeah. So he brought in a caregiver, right support. You know what they do? Like, beauty day or something, you know, so they do hair, nails tone it, like they just have a little they bang what they do beauty day, which was so difficult for him. But then he brings her in. It works. Yeah, work. So that's one of those trial and error, try something different instead of writing it down.

And a lot of it's our verbiage and a lot of how we approach them and what we say how we frame things. And we just have to reframe things. And that's what my book is all about, right? All these strategies, all these different things, different ways of trying different things, how to communicate with them differently. But a lot of it's just rephrasing in our brain, how we're going to present it and how we're going to approach them. And that's where the trial and error is, right? Learn as know as much like, I can say one strategy for one person, and then I'll say, Okay, you want to try this with another person like, oh, no, that won't work for different reasons. Okay, well, then let's try it this way for your loved one. And then we try it this way for somebody else. And it's really honing in on what's going to appeal. Let me give you an example. So one of the triggers for one of my clients every time she said that she was going into the office to work. Her husband went Bob listagg. So I said, let's not use the word work. And I said, What would be acceptable? Well, so she used to collect a lot of recipes. And they used to cook together and they still do. That's the other thing. We still want to capitalize on what people with dementia can still do, we just have to modify those things. So they used to cook a lot together. Now, we have him stir the pot, or we have him roll the dough, or he might have set up the table. We just changed that anyway. So I said, Well, let's come up with two or three different things we could say. So when you have to go into the office to work, we're not telling him you're going into the office to work. So we came up with, she's going into the bedroom, to look for recipes. She's going into the bedroom to see what kind of plants they can buy for the garden. In other words, we came up with two or three other things that were acceptable. Sure,

and you can imagine why because he's not able to go to work, he's not able to go to an office anymore and work. So you can just imagine all the failure, right that exact gets triggered him like that. You're going to work? What about me? Am I going to go to you know, why can I go to work?

Yeah, exactly. And the same thing, if we want to bring care into the home, we just come up with stories, I call them stories I love when their school teachers, then we bring in an intern who needs to go who who needs to do some internship. And this gal was a wonderful teacher, the person with dementia. And so now we're going to have this intern come in and this person with dementia and kind of mentor the gal. That's how we disguise it, and it's a caregiver coming in to provide care with everyone

if it's an executive, and an executive has always had an assistant. Yep. Yeah, bringing you an assistant, you've always had an assistant, you have to have on for a little bit, we're gonna interview and find you an assistant like you've always had, assistants do all sorts of things. Yeah.

But no matter how you look at it, a tough, tough road. And whatever we can do to be of support, and no caregivers and the care partners. And there are a lot of people who are out there to help, you know, we do what we can to try to make this journey better for you. And that they count, you know, they're equally as important as the person they're taking care of. And I think a lot of times, the caregiver doesn't see that the care partner, it's so much work, there's so worn out. And yet we want to make sure you're as important as the person you're taking care of no question about it. Because without you, there would be no care, there would be no, they're the backbone of caregiving. They're the backbone of this journey. And then to utilize this precious energy, and beat yourself up and be critical and judgmental. It's just so unfair to the care partners, so unfair to the caregiver. For every negative, there's a positive. So for anybody who is listening, and you're just really down on yourself, I want you to start thinking, how would you approach a really good friend, you would be very kind to that friend and compassionate. And we need to utilize those skills towards ourselves, we have them, we just don't apply them to ourselves. And I think that is key that for what you say and do for anybody else on this planet is the same thing we have to be sure to say and do for ourselves, which is very difficult because we're not taught, we're not really not taught to have self compassion. No, we're told it's selfish and self centered. And yet, it's the very thing that every person deserves and needs to give back to themselves. I say when in doubt, do not judge when in doubt, be at least neutral. If you can't say anything nice, then don't say anything negative. At least be neutral. For example, you had a bad day does not make you a bad caregiver. You had a bad day, because it was a tough day. And don't make us a problem. And don't make your loved one the problem. It was just a bad day for many different reasons. But that doesn't make you a bad person. And you have negative thoughts and feelings towards your loved one. Yeah, you do. Because they're not cooperating and they're not cooperating because they have an impaired brain. And if only they would listen and if only they would do what they need to do. They're not because they have dementia does not mean you're a bad person because you want this journey to be over. Does not mean you're a bad person because you're so angry at them for not cooperating. It's just a tough journey. And don't internalize that you're the bad person and that you're the problem. Right?

Absolutely. And you the things you mentioned are so and what you mentioned, there's, there's such normal thoughts and caregivers, brain waves, it's going to be over. I don't know if I can live another day like this.

And then I also get the calls. I don't like who I'm becoming, I get the phone call that I need to talk with you because I don't like the person I'm becoming when I hear that. That's a breaking point that says to me, okay, we got to do things differently. We got to get more support for you. We got to get more support for your loved one. And what does that look like?

Yeah, when things get ugly? Absolutely. Yeah, the breaking point. It's a crisis, whether we want to label it. We're having a caregiver crisis here. And we need to, like you said, take a break. Yeah, you're out. Take a step back here. Everything's going to be okay. But yeah, if you're at a boiling point, for anyone listening, if you're at a boiling point, please call one of us call Tammy. Reach out, absolutely. Reach out to your local Alzheimer's Association, get involved in a support group, call a helpline, there are 24 hour help lines?

Yeah, there's domestic Society of America. There's a lot of wonderful national organizations. And this is where I go back to when we first started talking. This is where our emotions and our feelings can be super beneficial to us. They actually our feelings and emotions are one of the best gauges, we have to determine how we're doing. And then the other thing is to listen to our body, right? But our feelings and emotions, when we reach that point where I don't like who I'm becoming, then that, in some ways is a gift to say, You know what, this isn't working for me. And it opens the door up for new learning new experiences. And it's not a door for judgment, it's not a door for criticism, it's a door for opportunity to learn and to for compassion, and understanding.

That is the gift of desperation. Because when you're in a desperate place, you are more open and willing to reach out to resources out there that are there. They are there for you. And then there's DX getting oftentimes to that place.

Yeah, we talk about the gloom and doom. But there's a beautiful, another beautiful side to this journey as well. The skill set that you learn, and the skills and the amount of adapting, that is required. On some level, you change internally, for the better, even though it may be very difficult. And the relationship you establish with your loved one with dementia can be incredibly meaningful, can be incredibly beautiful as well. And it just requires us to be open to learning and doing things differently. And Grace, give yourself grace. Please give yourself grace. Because if we had it all figured out, Boyle boy, one of us would be a million of the millionaire's right? We don't no one has it figured out. Boy, I wish I had it all figured out, I have a book, I want to provide tools, I want to provide strategies, I want to help normalize, I want to give them a place to that they're not alone. And yet, I wish I could say every single thing in that book is going to figure it all out. It's not It's a tool. It's a tool to help you navigate this journey to the best of your ability, and gives you a lot of understanding. But there's lots of tools out there.

This is a darn good tool. Your book is a great tool. Thank you. I'm glad it's out there on the world for caregivers. One of the main parts of your book is you call it the four ds of dementia care and maybe just touch on that. And then I'd love to have you come back and really elaborate about this.

You bet. You bet. So the four ds of dementia care the first D is detached, we kind of briefly talked about how to detach, to not take much easier said than done to not take what your loved one says and does personally. And to detach to really understand that your loved ones behaviors is because dementia is causing them to behave that way. So we kind of touched on that. Then the second D is documenting. And I mentioned earlier also about understanding our triggers as well as your loved ones triggers. And what I recommend that people do is anytime there's a change in medication, or anytime you notice a change in your loved ones mood or behavior, we write down the date, the time and in case of medication. You want to write down the date, the time and what was changed what was omitted what was added what was increased and the medications exactly, because a lot of times are side effects. extra medication. And it's not just dementia. And if there's side effects, boy want to get them off that medication sooner rather than later. And another time to document is when there's a change in mood and behavior. Because we're looking for patterns, like I just said, the one that I mentioned earlier, there might be some patterns, and we see them if we document so you'd write down the date, the time the event, what happened. And then we start looking at are there certain patterns, then the third D is defuse. And a lot of ways to defuse a situation is I call providing Dementia Friendly communication. Or we reframe I call it reframing what we say to ourselves about our loved ones behavior. And again, we touched on it and also about saying things in a way that's appealing to the person. And then the fourth D is distract, redirecting. And that involves, I always tell people have about four to six activities in your back pocket that we can use interchangeably. So that could be reminiscing. It could be photo album, it could be food, it could be music, but that we have four to six different activities beyond a shadow of a doubt that they enjoy. And we distract them by engaging them in those activities. So those are the four DS briefly of dementia care, detach, document, defuse, and then distract.

Those are great. Yes, I have a good example of distract, I just saw saw a gentleman that was an executive and he also loves baseball. Yes. So family puts him into assisted living, that's not working out. So Wilson is now in the memory and of the place and they pull out the baseball trivia book, or they pull the baseball, these sorts of things that they can pull out when he's not interested in the word search,

A beautiful example. And the only thing you have to keep in mind about that is that sometimes those activities will change as they as their loved one declines. And we just have to kind of know, but one thing that I do hear that those pretty much remained consistent. Is that reminiscing, talking about the past, and they'll share things with you over and over again, that were special that were important. And we're exhausted, like, Oh, my God, I can't. I've heard this for the 100th time. And I'm like, No, put it in your back pocket. Use that when you need it. Because that is going to be a good distraction. Pull out that old trip that you took. Yeah, absolutely. If they're bringing that up, over and over are the touchdown the winning touchdown that they scored when they were in high school. I want to hear that again, right. For a story with a client 92 year old client with dementia, there was a certain song she loved to sing. And so I would just say, I can't remember the name, the words that song and we would sing that song every day, every time I went to go and see her. So it's just knowing what those things are and utilize them.

I have a client too. She prides herself on being able to take all her meds all at once. Uh huh. Now and she won't take her medications. They'll say down the hatch. Put some in her hand and yeah. Ashley Yeah, you could take her medicine like I've never whatever your thyroid we call them vitamins. Yeah, like take your vitamins like I've never been able to do like I've never seen before. How do you do that? Yeah. Oh, found the hatchet. Yeah.

Beautiful example. Really? There are ways we just have to figure out what ways are effective for the person which can vary again from person to person, but there are ways to kind of I call it outsmart dementia. Right? Yeah. Our waste our smart dementia to be creative.Yeah. Yeah.

Well, Tammy, I'm so thrilled that you were here and you were able to lend us all your expertise and share your wisdom and your book. Again, essential strategies for the dementia caregiver. It is out there and on Amazon and right. So Tammy, thank you. I can't thank you enough for being here today and sharing your wisdom and your expertise with us. Thank you so much.

And thank you so very much for having me as a guest and thank you to your listeners for listening in.

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