Welcome to “It’s My Turn To Care.” We know the challenges you face caring for someone with dementia. That's why each week we bring you tips, strategies, and most of all, support as you navigate your role as caregiver. Let's get started. [00:15.6]
Dave: Hello. This is Dave Parks. I'm a certified senior advisor and owner of Home Care Assistance, and you're listening to It’s My Turn To Care: Secrets for the Dementia Caregiver. We really want to give you as many tips and strategies, and things to think about, as you go through this journey, caring for someone that's suffering from dementia, and today we have a very special guest.
Of course, all my guests are special, but we have our first author on the program and her name is Patty Green. She is a certified therapeutic recreation specialist, a certified dementia practitioner, a memory care director, and now she's an author. [01:08.1]
Really, she knows that people have questions and wonder where to turn for answers, and “What if you could make a plan?” would be one of the things that she would ask, and this book that she wrote called In Case I Forget: Three Steps to Take Before Your Memory Unravels really gives you answers to some of those questions.
Also, it kind of helps you understand what dementia is and what it's not, and what some of those universal needs are, and she talks about quality of life, care options, facing your fears. What if we don't let this disease steal everything from us by planning ahead? Tie a string around your finger and read In Case I Forget. This sounds like a great book, kind of something that would be great to read as you are starting down this journey. [02:07.2]
Patty, welcome so much to the program.
Patty: Thank you so much, Dave. I'm glad to be here.
Dave: Let's start by saying kind of why did you write this book to begin with?
Patty: I've worked in long-term and dementia care since ’95 and, through the years, I've just met so many people that I have loved, but I didn't know who they were before they got the disease. Then my dad got Alzheimer's and he had vascular dementia as well, and it made an impact on me. Then, working in memory care, there are so many families that are worried about and I'm right there with them. What if it happens to me? What if I get this?
I just remember really vividly and I put this in the introduction of the book, one night I had hired a really great entertainer and he was singing all the old songs that everybody loves, Let Me Call You Sweetheart. They were all having a great time, and in the front row, Betty was there for rehab. She had some significant dementia, but she was doing okay and getting her hip rehabbed and everything. [03:16.6]
Robin started playing that old song by Irving Berlin, Always, I'll be loving you always, with a love… Most everybody has such great memories of that song. Betty is in the front row and starts bawling, just wailing, and I was like, Oh my goodness, I gotta get her outta here.
I got her back to her room and calmed down and stuff, and the next day or the day after, we had a care plan with her husband, and so I told him that she had this reaction to the music and he hung his head and then looked at me and said, “35 years ago, I was unfaithful to my wife.”
Dave: Oh wow.
Patty: “Always is our song, and now, every time she hears that song, she remembers what I did.” [04:07.0]
And so, if he hadn't been there, we would have had no idea how come she reacted that way, and I'm pretty sure that their kids wouldn't know that. I mean, they'd gone on 35 years and repaired their marriage and stayed married and all this, but those traumatic events, if we don't know about them, she had to relive that just because I didn't have any idea she was going to have that reaction and that response.
I just want to take good care of people that are going through dementia and not make them relive terrible things.
Dave: Right, absolutely. So, talk a little bit about what dementia is and what it's not.
Patty: There's an old joke. I could tell the joke where the pastor comes and says, Now, Gladys, you're getting up in years. It's time to start thinking about the hereafter, and she looks at him and says, Oh, pastor, I do that all the time. I go in the kitchen and stand there and go, Now, what was I here after? [05:09.0]
Dave: Yeah.
Patty: And that's a funny joke because we can all relate to that, and that's not dementia. That's normal aging forgetfulness. Sometimes you forget where your keys are. Sometimes you can't remember how to work all the buttons on your remote, but if you put your remote in the freezer and then call your son and say, Someone has broken into my house and stolen my remote, that's dementia.
So, there are some things that are just normal aging and there are other things that cause dementia, but as we get older, we start thinking every time we forget something that we're getting dementia of some sort. In the book, I put in a sort of a standard memory test. My mom hates it when she goes to the doctor and has to name however many animals she can in one minute. She tries to overthink it. It's a good baseline test. [06:06.8]
Dave: Yeah, absolutely. What are some of the challenges people are facing with dementia?
Patty: Especially when you have someone at home and they don't remember that you're their daughter, they want to go home, they have to feed the kids, it's all those things that don't make sense to the caregiver, and nobody, I mean, if we work in long-term care, we have some coping mechanisms like entering their world.
So, if my mom is living with me and she looks at me and says, I can't stay here. I've got to go home and get supper for the kids, it doesn't help me to say, I'm your kid, Mom. I'm 60 years old, but I'm your kid. So, we learn strategies to say, Oh, well, what are you going to make for dinner? and kind of redirecting strategies for how to cope with those behaviors that make no sense to us. [07:02.0]
Dave: Right. Are there some common behaviors for those that are suffering from dementia and what can we do about those?
Patty: It depends on what kind of dementia people have. Seventy percent of people that have dementia have Alzheimer's type dementia, but there are a hundred different kinds of dementia.
In Alzheimer’s, a lot of the common things that I have seen is they have suspicion that you're stealing my money, or they're awake most of the evening, they get their days and nights. Their sleep schedule gets kind of wacky and they don’t. That's not always the same.
I mean, the behavior that they have one day can change the next day and that's why it's so hard to be a caregiver because you have to have your little bag of tricks to help them just get through the day, enter their world and perspective. [08:03.3]
Dave: Right. Talk a little bit about the end stages and maybe some of the care options that you write about.
Patty: Care options are basically starting with staying at home and having home care, trained helpers that can come in and help you and navigate that, give you a break.
Then, there's adult daycare where they can be themselves and have socialization, and have some self-actualization where they can still [have] just the rhythm of the day. They go in the morning and they come home in the evening. That rhythm stays the same.
They might need memory care where they need someplace secure because they leave and they're in danger to go out and get hurt, or they might need hospice care at the end.
So, there are lots of options and there are great senior advisors to help, like yourself, to help people find the best place. [09:03.1]
Dave: Yeah, there's no question about that, and I think I mentioned this in the last show, it’s really finding… To me, the care, the type of care, is not necessarily the first step, so you really need to find someone that you can trust that you can talk through all the different options, because in some cases people don't want to stay at home. They want to be in a senior living community.
Patty: And this is one of the things that’s in In Case I Forget, because if you get dementia, you have to face your fears. What are your fears? Number one, the disease, but number two, am I going to be a burden to my kids? What are my care options? Can I think about it ahead of time? So, it's not so [devastating]. You know this, Dave. It's so devastating a diagnosis, and people that don't work in the industry feel so helpless and defeated because they don't know what to do. [10:01.8]
So, if you face your fears, that's the first step. Then, the second step, because every person who has…the Alzheimer's Association said, if you meet one person with Alzheimer's, you've met one person with Alzheimer's, because everybody has it differently. So, if I go through some memory questions and write down my old memories, because my short-term memory is going to be affected, but if I write down memories of the things that were important to my mom and dad, my favorite pet growing up, some of these things that my caregivers then can use to understand who I am and care for me better.
I make one illustration in the end stages, some well-meaning caregiver knows that classical music is so good for your brain. What you really would like to hear is a little bit of Johnny Cash and remember baling hay with your brothers as you're lying there in bed stuck, reliving those memories, not wishing that classical music would shut off. [11:04.3]
Dave: Sure.
Patty: But nobody knows, so they're putting on classical music, trying to do their best they can. These are the things that you’ve got to write down. Then, if you write them down, you're obligated to share it. What a gift to have a whole bunch of your memories on a memory stick or in a journal and give it as a gift to your child and even your spouse. My husband doesn't know how I grew up when I was a kid, the things that were, and those are what you need to take care of someone with dementia. You need those old memories.
Dave: Yeah, and a lot of times, it's the things that we would, if you just think of yourself, if you're younger and you have a healthy brain, what if, right? It's kind of like, What if I'm diagnosed in 10 years? What would I want people to know?
Patty: Yeah.
Dave: It reminds me of a story. I was at a senior living community. We were there, but they didn't want the client to know we were there, but the family wanted to stay there for safety reasons because they were scared he was going to wander off. [12:07.3]
Anyway, so we were there, and this gentleman walked up and we were talking. Actually, at first, he would not speak to me. He just kept going back and forth. He was a resident and I ended up finding out that he was in his nineties. I finally asked him, I said, “Do you like music?” and he said, “Yes.” He goes, “I like Elvis.” So, I had Spotify on my phone, and so we started playing these classics for him and then we were, all of a sudden, best friends. I only knew him for three hours.
Patty: See, it's magic.
Dave: Yeah. I know you've done some work in the activity area, trying to improve the quality of life of your residents, so talk a little bit about that.
Patty: Yeah, that's really my sweet spot. My degree is in recreation therapy, so my husband teases that they pay me to play. [13:01.6]
Dave: Yeah.
Patty: But if you think about the things in your life that make life worth living, it's those things that are fun, right? We do the things over again that are fun like listening to Elvis, watching Elvis movies, even, and as quality of life and who we are.
I talk a little bit in the book about my dad going through this disease and he was a Golden Gloves boxer. He was a paratrooper in the war. He rode rodeo. He was like John Wayne. Always played sports, coached. He was a warden in the federal penitentiary when he retired, so we moved and lived in six different States, but because he loved sports when he couldn't play football, play basketball anymore, then he coached.
So, all those things that make you who you are, you can adapt to who you can be, like ladies that have crocheted and knitted all their lives. They have arthritis, maybe they can't see anymore, but you know what? How about you wind this yarn for me? I really need somebody to wind this yarn into a ball. [14:12.7]
So, some of those things, if I know about them, I can adapt parts of it to what they still like. They used to dance and now they're in a wheelchair. Well, we're going to put that music on and we can still move. So, all of those things that make us who we are that define us, if you're a reader, we can get in a book club, or if you can't see anymore, let's turn it on the computer and make it audible and we'll listen to the book, and then we'll discuss it as a book club. You just have to adapt.
Dave: Right. Yeah, I do a lot of presenting on different… We do different activities. Some are more difficult than others, and no matter what, when I do name that tune -
Patty: Oh yeah. [15:00.6]
Dave: - everybody pays attention and has a good time. So, yeah, I could be bombing up there as a presenter, so then I always go to name that tune.
Patty: Yeah, and singalongs are great, too, because they don't care what you sound like. They just want you to sing. I am not a singer.
Dave: That's right. Now, you talk about fear in your book, so tell me a little bit about it. You kind of have this three-step process dealing with it.
Patty: Right. Like I say, I kind of wrote this for family members or people who have this fear that they might get dementia. Chances are, I mean, it's the number three killer of older people, so chances are that's a realistic fear, but you’ve got to face it. So, what are you going to do about it? Just in case? I mean, that's the name of the book. In case I get it, I'm going to have a plan. In case I get it, who is going to take care of me? In case I get it, do I have a power of attorney? Do I have those advanced directives and things? [16:01.8]
I'll never forget. My mom was probably in her sixties and she called me up. I'm in my thirties and I’ve got little kids, and she says, Hey, Dad and I are doing our funeral plans. Do you care if there's a body? I was like, Well, Mom, I never thought about that. But those are the kinds of things that you have to pay attention to.
Dave: Sure, and also it takes pressure off -
Patty: Your kids.
Dave: - your loved ones, right?
Patty: Facts, yeah.
Dave: I have some friends in the funeral business and it's amazing how many decisions that have to be made, but if you can take that off your kids, then they can focus on the grieving process and not the mechanics of having a funeral.
Patty: And how long sometimes the dementia goes on. You and I work in the industry, but people down the street have never dealt with this, and so I just kind of wrote this book so that somebody could pick it up and have sort of a bird's eye view of what it is, what it could be. [17:01.5]
So, there are helpful things if they're already a caregiver and they're trying to understand, Does my dad had Lewy body dementia or is this…and also is it a combination like my dad had of vascular and Alzheimer's? But the point of all those things is that it's the person. No, we have to care for the inside person.
Dave: Yeah. I tell clients, because they'll say, What do most people do? What do people do when they're in this situation? I say the only thing that's common in the senior industry is that every case is unique.
Patty: Completely.
Dave: And so, you need to do what's best for you, and just because it worked for your neighbor, they may say, Oh, you definitely need to take them to this community because we love it there. You need to still do your homework and find out what's best for you because it’s what may be great for them. [18:01.3]
I'll just give an example. Maybe they're a very gregarious social person and they love all the activities that are done at community A, whereas there may be another community that they may have an activity program, but it's more things that you like to do, that kind of thing.
Patty: Yeah.
Dave: Anyway, you definitely want to do…
Patty: And people are different. I'm more of an introvert than my husband. He will be in the middle of everything. I will be like, Give me a good book, leave me alone.
Dave: Okay, yeah. No, I get it. That's kind of the way my wife and I are. She's the gregarious, never met a stranger, doesn't to be left alone, whereas for me, at the end of the day, working all day, I kind of like my me time.
Patty: I'm with you there. I’m with you.
Dave: Yeah. What other things are you working on these days?
Patty: After I did this, I was approached by the people that read it and the people that endorsed it. I need to do a journal, so they can just have these questions, because if I say, Dave, you need to write down your life history, that's pretty daunting. [19:09.6]
Dave: It’ll be very boring, by the way.
Patty: Well, no, but if I have questions that you can answer, and so I'm working on a “forget me not” journal that people can order and then then give as a gift. In this book, I make different ideas like write it down, to put it on a flash drive, something like that, but this would be something that you could actually write down.
Dave: Where can they find the book?
Patty: It's on Amazon and it's on my website.
Dave: Very good, okay. So, they just need to put in the title on Amazon, right, In Case I Forget?
Patty: Right, In Case I Forget: Three… What is it?
Dave: Three steps.
Patty: In Case I Forget: Three Steps to Take Before Your Memory Unravels. And the website is In Case I Forget 2020, which I started in January, but now no one is going to forget 2020.
Dave: Right, that's true. That's one memory that we probably wish we could forget, but… [20:03.2]
Patty: Yeah, but it's InCaseIForget2020.com.
Dave: Okay, very good. If folks need to get in touch with you or if they have questions, is there a way for them to do that?
Patty: Yeah, they can call my cell phone. It's (817) 821-1780. I'm not like a big corporation. I just wrote a little book, hoping that will be helpful.
Dave: Hey, great things come in small packages, right?
Patty: Yeah.
Dave: Patty, thanks so much for being on It’s My Turn To Care: Secrets for the Dementia Caregiver.
This is Dave Parks and we always encourage you to visit our website HomeCareAssistanceFortWorth.com and our office number is (817) 349-7599. We hope you have a great week and look forward to talking to you next week. Thanks so much. [20:57.7]
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