TERRI PEASE, Ph.D., CONSULTANT - FROM CARE PARTNER TO CAREGIVER

In Episode 74, Don Priess and I had an incredible conversation withTerri Pease, Ph.D., an Author, Coach, and Consultant for Spousal Caregivers. As a highly experienced professional in the social services and healthcare industries, Terri has dedicated her working life to encouraging Parkinson's caregivers, to make self-care real, practical, and possible. But really, the same applies to almost all Spousal Caregivers - including those caring for spouses with Alzheimer's.
Terri has has also dedicated her life to working with people who are facing highly stressful situations. Her experience has taught her how to provide supportive and trauma-informed care to those who need it most. When Terri married her husband who had Parkinson's Disease, she brought her wealth of knowledge and experience to bear on caring for him. She trained staff in organizations around the United States on how to offer supportive, empathic, and trauma-informed care. Her professional experience has informed her approach to caregiving, and to encouraging Parkinson's caregivers to make the idea of self-care real, practical, and possible. In addition to her work as an author and caregiver advocate,
Terri's book, "Love, Dignity, and Parkinson's: from Care Partner to Caregiver" (Paperback – October 19, 2022 ), is a great resource for caregivers whose spouse or loved one has been diagnosed with Parkinson's Disease. and are feeling overwhelmed and unsure of how to best care for them without losing themself. The book offers a new approach to caregiving that can help ease the stress and anxiety that come with this diagnosis. In this book, you'll learn how to strengthen your caregiving capacity, maintain peace of mind, and live a less stressful, upsetting, or lonely caregiving life. You'll also find practical tips on how to deal with common experiences like changes in mood, challenging behavior, and communication difficulties. 
Most importantly, Love, Dignity, and Parkinson's will serve as a constant reminder that you are not alone in this journey. With compassion and wisdom, Pease offers invaluable insights into the caregiver experience, drawn both from her extensive professional experience providing trauma-informed care and from her own years as a caregiver to her husband. This book is an essential resource for any caregiver navigating the challenges of Parkinson's Disease or any challenging disease.
Enjoy!
xoxSusie

Terri continues to post information, support, and resources at  SEABURY HOUSE.
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Transcript

Susie Singer Carter: 0:00

Hi everybody, it's Susie Singer Carter and I just wanted to take a minute to tell you about a wonderful product I just discovered. It's called SOCIAVI. And SOCIAVI in Latin means to share and unite. It is the simplest way for older adults and people with disabilities to connect and engage with their family and friends. There's no username, no password, no login and no app to choose from. It's just a dedicated device. It's the sociol the C to M connect to me device it's always on and ready to use. And families and caregivers just install the app on their smartphone. And then you can just begin sending photos, videos, and even have live live video chats and your loved ones. They don't have to do anything. They just love it. And because all of us must fight elder abuse and work together to bring awareness to this issue says the obvious supporting my efforts to produce my vital documentary, No Country for Old people. When you subscribe to sociology for your loved ones, they will donate the payments received and you can help us reach our goal while connecting with your loved ones in the simplest way CCRB connecting generations made simple globally. To learn more, please visit their website at www sosiale.com. And when choosing the payment select the annual subscription the proceeds will go to help the production of our documentary, No Country for Old People and I thank you so much.

Don Priess: 1:27

When the world has gotten down, and Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love conquers all is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now here are your hosts Susie Singer Carter and me, Don Priess

Susie Singer Carter: 2:06

Hello, everybody. I'm Susie Singer Carter.

Don Priess: 2:09

And I'm Don Priess and this is love conquers all calls. Hello, Susan.

Susie Singer Carter: 2:14

Hi, lovely Donald. How are you? I'm lovely.

Don Priess: 2:18

That's what I said today. Today. I'm lovely. Which says it all. What's up, what's happening.

Susie Singer Carter: 2:26

Well, we're both wearing black today. We got the I always wear black. This is kind of my uniform.

Don Priess: 2:31

It's kind of the same every show or the last show. I actually wear a button down black shirt.

Susie Singer Carter: 2:38

Wow. Interesting, folks. So interesting. What's Yeah, wardrobe talk. I well, I do like some, some therapy, which

Don Priess: 2:47

Yeah, you do like your wardrobe.

Susie Singer Carter: 2:49

I like retail therapy. I did clean out my wardrobe last week though. And and that is therapy to believe me, it's therapy. I mean, it feels so good. Cleaning out and you get and you find the most amazing things. You're like, oh my god, I forgot. I bought that. This one still has a tag on it. It's crazy. So it's actually 31 three shirts. Yeah, I've worn three shirts since I cleaned out my closet that I didn't know were there. I know.

Don Priess: 3:21

Yeah, it's, it's like our shopping or you clotheshorse. You only wear one shirt. So when I say the three shirts, it's they were all like this. Okay. So I didn't know they were there. Wow. It's like Theranos. Girl. What's her name? Thier nose? No, no, she's going to she's going to jail.

Susie Singer Carter: 3:43

Elizabeth, is that her name? Elizabeth. Elizabeth Miller? No. Elizabeth Holmes. Holmes. That's it. Holmes. Yeah, yeah, no, that that show was fantastic. But she had a closet full of the same jacket and shirt and wore the same thing every day. Yes, with her voice like this. She put her voice down their nose. That's my favorite imitation. Anyway, we should get this. I just I just saw on the view this morning, Michael J. Fox. And he's we just watched his documentary and we just watched his documentary with you as Parkinson's called still and he's he's still he's still moving. I mean, it's it's pretty extraordinary how he's embraced this disease ultimately. And he's had it so long and and we have an oddly enough was the you know, always well, not oddly, it's the way life goes the way the world works that, you know, of course, out of the blue I get a query about a woman who is a carer or was a caregiver, and a care partner for someone with Parkinson's which is quite similar to Alzheimer's in certain ways. You

Don Priess: 4:59

And she has such a great perspective. So, I'd like to just bring her on Don, can you introduce can I? Can I tell you about her? Please do it. Please do it now. All right. Terry Pease, PhD is an author, coach and consultant for spousal caregivers. She's dedicated her life to working with people who are facing highly stressful situations. When Terry married her husband who had Parkinson's disease, she brought her wealth of knowledge and experience to bear on caring for him. She trained staffs in organizations around the United States on how to offer supportive, empathetic and trauma informed care. Her professional experience has informed her approach to caregiving and to encouraging Parkinson's caregivers to make the idea of self care real practical and possible. Terry recently authored love dignity and Parkinson's from care partner to caregiver, which offers a new approach to caregiving that can help ease the stress and anxiety that comes with this diagnosis. In addition to her work, as an author and caregiver advocate, Terry continues to post information support and resources on her website. And with that, we are so honored and delighted to welcome Terry Pease. Hello, Terry.

Susie Singer Carter: 6:14

Hi, Terry. So nice to have you

Terri Pease: 6:17

Hi Don. Hi Susie

Susie Singer Carter: 6:19

It's very nice to have

Terri Pease: 6:20

I am very delighted to be here.

Susie Singer Carter: 6:22

Thank you, thank you, it's, it's, it's a great, a great conversation that we're going to have with you because it's really about caregiving. And, you know, we we've been focusing a lot, obviously, because it's love conquers all on Alzheimer's. But, but Parkinson's is also in that in, you know, if you're going to bundle kinds of diseases that you know, this, there's a lot of similarities, even though it doesn't manifest physically the same way. But there's a lot of similarities. And I think that, you know, by you learning, and really, really immersing yourself in this world of caregiving, that you you have a lot to offer, anybody that is really caregiving and care partner, which I'd love for you to also define the difference, because you have said earlier than when we were talking before we started recording about this new role that you're taking on as a care partner, as opposed to a caregiver. So I think that's interesting. But tell us a little bit about yourself and how you come to this interview today. What brings, what's this, the journey of your, of your experience?

Terri Pease: 7:35

Well, it's funny, I was talking about this with someone else earlier this week. And I come to this with a combination of experiences, I was trained as a developmental psychologist, and I was a college professor and worked for many years in a variety of sort of social service settings where I was supporting the people who took care of trauma survivors, essentially. And so it's been a lot of time just thinking about the ways in which things happen to people and the kinds of support and help that people need, and what the helpers need. So I've always had that sort of double layered focus on the person who experiences the trauma or the, the difficulty, and the person who's doing the helping. And that's always been sort of my attention. So I've done that. I've done that a lot of different kinds of settings. And then, late in life, I had a very happy second marriage. And I married someone who told me

Unknown: 8:32

right away, that he had Parkinson's. And so I met my husband knowing that he'd had Parkinson's for a good long time. And I have to confess, I tried really hard not to look green. Because if you don't, it's hard to say yes. And someone who had a condition that I knew very little about, but I knew it was not a zero, it's not level. But he was my guy and you off my feet, so to speak. And so we ended up marrying, and I became a caregiver. And I took care of my husband whose Parkinson's first was moving around kind of slowly, and then as they say, started to gallop along to the point where it was, you know, the most pervasive thing that he was experiencing, and the most profound part of our relationship was my moving from wife, to care partner, and then to caregiver and took care of him for the rest of his life. And then after he died, I was at a kind of a wellness retreat, as I was asking myself, what's next to me? And the question came up in the course of the activities of this event, can you have a happy and successful marriage with someone who has dementia or another degenerative disease? And I wanted to know the answer to that because I felt like it had that kind of marriage. And so that led to my writing

Susie Singer Carter: 10:00

This book. Oh, that's amazing. It's so in, in the zeitgeist right now with Michael J. Fox and going, you know, and watching his his wife, Tracy, Poland, you know, in, like he says in his documentary in sickness and in health, and she's been there the whole time. And you know, and it's been a long disease, like my mother's Alzheimer's was 16 years of a disease. And, and I mean, Michael has had it since 1991. His has progressed very slowly. But now it's, you know, it's, it's really at its peak, from what from all signs, it looks like that. So it really is extraordinary, you know, that you and, and are modeling that kind of relationship.

Unknown: 10:46

Yeah, he has lived an extraordinary life before he was diagnosed. And he's lived an extraordinary life since the diagnosis. And a lot of people are thinking about Parkinson's disease. And one of the things that I noticed I looked at an interview that he did just the other day, Michael J. Fox seems not to have the primary cognitive effects that are so common and ultimately in as people age with Parkinson's, up to 80% of people who have Parkinson's will develop a form of dementia, Parkinson's, dementia, and he doesn't seem to show that he seems on the ball sharp cognitively, probably pretty much as he had ever been.

Susie Singer Carter: 11:31

For many people, it's different than that. And I think it's really important to talk about the ways that Parkinson's changes, the kinds of cognitive functioning that a person has. And also, most importantly, I think the way Parkinson's affects the kinds of relationships that that exists between a person with Parkinson's and their caregiver. I certainly didn't know about it when I met married my husband, and especially a caregiver, that that is, is a spouse. You know, it's so different. And, and I've seen that time and time again, with, you know, married couples that are experiencing Alzheimer's, where there's a lot of denial, where they don't, they wouldn't want to, to lean into it, because it's too hard. And you know, and different from you. They didn't marry into it, it just occurred. So in some respects, yeah, you, you were rolling up your sleeves, you knew kind of what you were getting into. But obviously, you had no idea because you hadn't experienced it, but you knew that something was coming.

Unknown: 12:41

Right, I knew something was coming. And I definitely said yes to the challenges that were going to come with this marriage. But then, as Michael J. Fox says, or his wife says, when we marry, and we say, in sickness and in health, that's really saying, all of us, at some point will experience an aging. And so that that's a commitment that any person makes. Did you discuss ahead of time, the the commitment, the as you going to be become a not only a care partner, but then a caregiver was just discussed? And you know, he probably didn't know we don't you never know where it's heading. But how, how the depth of it? Did you discuss that ahead of time? What were the expectations going in? I don't think either of us really knew the way that Parkinson's would affect our marriage, I assumed that it was the physical disorder, shaking, sticky feet, the difficulties with mobility and stiffness. And because I was familiar with people with disabilities, and it had people with disabilities in my life, before I knew I can do this, this is not too hard for me. I did not expect the changes that lead to Oh, for example, that my husband could no longer feel concern for me, empathy for me, because Parkinson's and I think this is a way in which it diverges from Alzheimer's is that it specifically seems to focus with its reduction of dopamine, it reduces the capacity for empathy. And I will never forget, I had had a fingered scary and serious diagnosis, which fortunately resolved and hasn't left me with any long term effects. But when I got the diagnosis sometimes when treating for this disorder, he looked at me one day, and he said, You know, I know I should care. But I don't

Susie Singer Carter: 14:38

hate. It sounds awful. And yet he wasn't saying it in any ugly way at all. He was so puzzled by that, that he couldn't find it in himself. That's so interesting. I we have a mutual friend whose husband was in a car accident. And for a very long time, he he's he since regained a lot of his cognitive deficiencies deficiency that that was the result of the accident. But wherever the head injury was, he was lacking empathy. And he knew it just like what you're saying. And he was like very nonplussed about it. He was very, you know, just rational and said, I don't know if I can love you anymore. I just don't feel it. And it was very, you know, and then I remember her saying, it was a huge problem. And, you know, the differences is, she had hoped that, that he would regain it, which he did. Whereas, you know, knew that it was only going to get exponentially worse, is that correct? It does. I think that's right. I mean, it changes over time. And as Parkinson's progresses,

Unknown: 15:49

through the whole configuration between spouses or committed partners, changes, as the person becomes less able to engage at all verbally, and becomes more clearly dependent. For everything for all the ADLs. And for all of the moment, care, the relationship, I can interact with, sorry, I should sorry, that's a bit of jargon, it's activities of daily living, all the stuff that we do, you know, cleaning up, washing dishes, washing our hands, feeding ourselves going to the bathroom, all of those things. And people lose the ability to, to manage those. So yeah, I mean, it's a hard thing when that relationship shifts, and you know, that they're just not there. I'll never forget the day that I'd speak in front of the bathroom mirror. And I just looked at myself in the mirror, and I said, you know, he has nothing for you. And it was heartbreaking to make that realization. But then it was also freeing, because once I understood and as I came to understand that this was part of what Parkinson says, done to his brain, and his capacity to love once I understood that it freed me from looking for. Right, and that was a great relief, because then I wasn't feeling hurt. Every time he, you know, didn't smile. Did you embraced it, you embraced it? Is Can I ask you just to

Susie Singer Carter: 17:24

just a detail on Parkinson's, because I'm not that familiar with it. But in terms of that kind of, you know, like with Alzheimer's, you get these, there is a lack of, of empathy. It can be it can manifest that way. We're, you know, it's really their world almost like children. Right. And they don't see outside of that. But at but but what we live for as caregivers of someone with Alzheimer's, are those moments of lucidity which do happen.

Unknown: 17:52

Right? So does that happen in with Parkinson's? It's different. I mean, first of all, people say, and I think it's really true, every part of this case is different, different, but in my exists, talk about my experience. And maybe we can generalize from that. But in my experience, the losses were spotty, and inconsistent. So that even though there were some areas in which my husband could do very little for himself, I'll give you an example. We went out, we bought a sailboat, we're about to give it away. And so he was talking to the young men who were fitting up this boat and getting it this little silver, getting it ready. And he got involved in a very complex conversation about the wind and the sails and things that are beyond my understanding. And he was his regular sailor cells. But he couldn't really find his way back to the car. And so there's that kind of inconsistency where he's there. And then he's, he's conducting, that I'm talking to all people with Parkinson's. I think the similarities, the disorders are so individual that rather than trying to separate them and say, Well, this is one or the other, the responsibility for the caregiver is pretty much the same. Whatever the label is that the neurologist put on the difficulties the person is having to be present, to be engageable, to be engaged, to step back and step in

Don Priess: 19:23

that kind of nimbleness that's required to anyone who's helping somebody who has a kind of dementia. Right, right. My my mother, right was just diagnosed with Parkinson's about two years ago. She's 89 And they say it's really not progressing much right now. Thank God, but I noticed little J and my brother and sister and it was oh my god, I can't believe mom said that or acted that way or is acting like this, and I was like, This is not you know, we have to be, you know, ready for anything we don't know and like because it does manifest differently. In between for everybody. I mean, just again, without we have, I have no real knowledge of it, you know, and you going in with no real knowledge of even though you were, you know, caregiving was your expertise, it's so different. And I think it's just being staying in tune with what's going on and not looking for, oh, that, you know, saying, you know, not trying to find a reason, you know, what the reason is for that change in behavior. It's not because they suddenly are, you know, this or that, that it's not that their personalities changes due to the that disease. And it's so difficult because it does manifest differently with everybody. You know, I look at Michael J. Fox, that's one thing your husband was another thing, my mom is another thing, and there's a million different ways. So I guess it's just being able to just roll with the punches and know that it's not necessarily them. It's the disease. And I think that that's helpful when, when having to caregiver, for somebody, that's really true, being able to, I use the word before nimble, which means to, in my mind, to be able to just let it come as it does. And respond to it in the moment. It's something that I've learned recently, and then I've been working on and talking with, with other people about is that actors who learn improv, learn to say, yes. And and there are people talking about that. Just say yes, and there's a good TED talk about it. And that is as a response to what comes by as a person has dementia and presents you with?

Susie Singer Carter: 21:43

You're not my daughter, what did you do with my daughter? Exactly, exactly. That's beautiful. I come with a an acting background, and an improv background, I did it for a very long time. And so that makes so much sense. That's a beautiful way to frame it. You know, I was trying to think of the terminology when you were talking about your husband, you know, move getting into his, his sailor self. And that, you know, is cognitive reserve, like we have, everybody has a cognitive reserve, like my mom was a singer. So, you know, you know, she couldn't remember anything, but you, you start singing, you know, our love is here to stay, and she's on it, you know, and so that's her cognitive reserve, whereas your husband had this as one of his cognitive reserves, right? So it's really, really imprinted. And so that's that it and that does get very confusing. Because the feet, they they appear to be themselves. Until they're not, not moments. Yeah. Especially because you think the MP is always missed. So exactly. Where are you? And it's gone that quickly. Yeah. So how did you write that? And how long? Let's let me back up. How long did you have a marriage? Really? You know, when we were married? I count on my fingers. 11 years. And I would say that Parkinson's was the third party in that marriage for the last eight of those 11 years. So you had about three really good years was a symbiotic kind of relationship. And then then it started chipping away. That's right. Wow, you your debts quite a hero. And that's quite a task you took on that most people I don't think could have. I mean, you're very special. It's very,

Unknown: 23:41

I don't, I don't feel like it's something special so much is that this was just working. And we found a way to still be together, as he changed. And one of the things I had to learn as a caregiver is that the job of meeting him became more and more a one sided job in, at least in our fantasies. A good marriage is give and take and give and take. But firstly, my experience was that and that's what I said to myself in the mirror, there's no give. It's just received. And this is just coming to me as I'm saying, this is a difference between my holding back and his taking, and my being ready to offer so that he can receive.

Don Priess: 24:31

Right and maybe that's a way of thinking of dementia caregiving, the more that we can offer what the person can receive. Did you ever become resentful? And if so, how did you deal with those feelings? I mean, what are you guilty for being resentful? Or maybe you never were resentful for the lot you were in.

Unknown: 24:51

Sync I still resentful. I've said to other people that there was never a day when I was sorry to have married him. And there were days when it was hard. It was hard. You know, enough to keep me you know, in tears. And yet, I was never sorry, I never felt that it was so the state to marry my husband. And I can't I mean, I know that plenty of situations people do feel that they made a mistake by by joining in on a marriage to someone who has dementia such as Parkinson's or Alzheimer's or some other form of dementia. And I have certainly advised people who are thinking, I fall in love with this person. He's got Parkinson's, what should I do? Should I marry him, I love him. And I think it's really important. And part of my sense of responsibility is to say, these are the facts as I know them. These are the ways that you can inform yourself. And in fact, I even write about that in the last chapter in the second to last chapter of my book, where I talk about the fact that you are free to say no.

Susie Singer Carter: 25:54

And I firmly believe that you can't really say a meaningful Yes, unless you feel free to say no, even to something as central as caregiving. Also, I think, what's what's different and sets you apart, maybe I'm wrong, is that, you know, I can imagine somebody who's had a long history, you know, you got married, you've been together for 20 years, 25 years, and then they contract Parkinson's, and now you've got all this history to carry you. Right. So you made history in three years. And that, and that was your, that was your base. And that's why I do think it's extraordinary, because, you know, you you had to really live in the moment and, and really make that history and, and, and make it the value that you wanted out of it. Because, you know, it really is I mean, I know that I hear what you're saying and that you don't think you're extraordinary, I think you are. And I'm a very, I'm a very empathetic person and very giving like I really caregiving for my mom for the whole time. But I still think as a couple, it's different. And I could walk away when my mom would lash out at me, as you saw in the movie, I could, you know, it took a while to learn it. But I also had the history and she's my mommy.

Unknown: 27:26

And staffers, three, I think that history makes a big, big difference. If people can look back on a satisfactory marriage, no, marriage is perfect. But if people can look back on a marriage that has met their needs, and they felt feel that they've met their partner's needs, then there is a kind of almost like a relationship bank. And that bank helps to give them something to draw on. I encourage people, if they've learned if a diagnosis right away, start taking pictures, making voice recordings so that you have those things. I have a couple of very, very precious recordings of my husband's voice speaking to me, and one very special case reading to me. And there were days when that's what held me together, listening to that.

Don Priess: 28:14

And so you had that foundation, you had that foundation, that you knew that this wasn't just a flimsy house. There was a there was a foundation there. And so when the wind blew up, yeah.

Unknown: 28:29

Yeah. Wow. Wow. Again, so let me go back to again, what you said about caregiving and care, care partnering, what how do you define that? Those two different I think they're, you know, that's in the title of my book, because as I thought about it, to be a care partner means that there's a project in enterprise that you and the person who has the disease are working on together, whether it's somebody who can still prepare their own meals, or track their own medication, and you take on things that they cannot take on for themselves. And sometimes you do it just because you can and because you want to. And sometimes you do it because there really is no other choice. But when you and the other person are both engaged in managing or combating if you can, a disorder that's being a care partner. When the person who has Alzheimer's or Parkinson's loses the ability to participate in their own care, I think you'd become a caregiver. And that's a very important change in how you think about what you're doing and how you feel about what you're doing. Because all of this I was saying before all of the offering the giving, the doing comes from one side

Don Priess: 29:48

right. You did write a book Love dignity and Parkinson's from care partner to caregiver, why the book what at what point did you decide I have to write about this and And was that more for yourself? I don't think so because I know who you are. I think it was for others or both.

Unknown: 30:09

Yeah, tell us about, I wrote it for myself, I wrote the book that I wished I'd had. And I hear that a lot. I just thought, you know, somebody needed to have said this, and nobody had said it. And so I did it. And I guess I'd always wanted to write a book. And that was the book that came.

Susie Singer Carter: 30:32

Yeah, I've heard that a lot from from authors that say, I wrote the book I wish I had. And I often tell them, when we interviewed them is that you wrote the book, I wish you I had, when I was going through this, because, you know, now I'm discovering all these wonderful books and authors. But when I was going through it, I had, you know, I was really blazing, blazing my own trails, I didn't know, I really didn't know what the hell I was doing. To be honest with you. It was, you know, I was learning as I went, absolutely. And when you're in the middle of it, you don't have the time to go to the library, you don't have some time to research. And so the information really, the more that someone can hand you something and say, This is a place to start. This is information that will help you to understand where you are, where you are, what's happening around you, and how you can manage it. And so, hopefully, I'm saved other caregivers, a lot of the effort and a lot of the anguish that are, you know, for me, we're part of being a Parkinson's, you've turned yourself into a caregiver for our care partner, rather, with other care partners givers. So you've been able to to put yourself in that position. And so what what else do you do? I know you do a lot, but why don't you tell us what else you you've been doing in this realm?

Unknown: 32:01

Well, in addition to having written the book and trying to let people know about the book, I've recently started an online program and email programs so that caregivers can get a step by step, mental reset that I call rest, and refresh. Because finding rest is one of the hardest things when you're a full time caregiver, there's never the opportunity to let go of the responsibility to let go of the needs. And so this 21 Day Program is one of the things that I've created on my website is other things. But basically, what I want to do is offer caregivers, resources and information and ideas and support so that they don't just feel alone, and they don't feel so

Don Priess: 32:46

isolated. And like their infant reinventing the wheel. When you say I need a break, or I need to, you know, there's guilt involved in that. Because it's like how, if I'm not spending every waking moment, and every sleeping moment dealing with this, then I'm not a good caregiver. And that's not the truth. What are some of the tips, you could simply that you can give a caregiver that that will allow them to, you know, break off for a moment and be okay, it's a mindfulness.

Unknown: 33:18

I think it is mindfulness. But I think that when you recognize that this is what's happening, it's not my job to fix this. And the myths of caregiving is that if I'm good enough, if I love hard enough, if I sacrifice enough, my partner will return to me and say, I have what I need. Thank you. And that life will, again feel balanced. And what I'd like to tell people is that it becomes something different than that, it becomes recognizing that this inability to fix the situation is where you are, that's what you're looking at, and finding ways and I give people ideas about ways to say, this is what is and it's not my job to try to fix it and freeing yourself of that. Responsibility freeing yourself of that. It's really a myth that you can do with all means that you're free to choose. This one. Yes. This one no, this one not this time. Hmm. That's good.

Susie Singer Carter: 34:25

That's really good.

Don Priess: 34:27

Because you see, I know you went and you also felt like you could fix it. You could say I can, I can talk my mom out of Alzheimer's. I can teach her out of Alzheimer's. And, and I'm sure with Parkinson's the same way you can't talk them out of it. You can't teach them out of it. It is what it is what it is. Yeah. And it's really going moment to moment. And saying, Okay, I'm doing my best and also could do Yeah, and what you were saying about you know, choosing what you can or will do and being able to say I don't want to do that.

Susie Singer Carter: 35:00

You know, I remember when my mom became incontinent, and I was like, I don't think she would want me to address that. And I don't think I want to, I'd rather ask for help with that. And I didn't feel guilty about it, because I just made that decision. I was there for her for so many things. When I know what I was good at, and I know what I could give to her, to make her have a better life, or as better better, you know, as good a life as she could while she was alive. So, but I did make those choices, and I think you have to for your union and think it's okay. You know, some people say, Oh, I could never clean my mom's mouth, and I'm like, get me in there. I'll get right in there. But for some reason, you know, they can't do it, but I can, and I didn't want to deal with the incontinent. And because I felt like my mom, and I maybe it was my own, you know, projection that, that she would feel embarrassed or less than lose her dignity, lose her dignity.

Unknown: 36:08

I think each person is different. I mean, I had the experience myself that the incontinence, I was able to manage that at some point, I said to my husband, you're not doing anything that I don't do. We all have bodies, and this is what bodies do. But there were other forms of professional care that I just found extraordinarily difficult. And giving my self permission to like, I never learned to shave him. Thank goodness, he had mostly a beard because I never shaved him well, guy. And being able to say, No, I use the image that if you're part of Team to you and said, Who's that refrigerator? I don't like where it is, you wouldn't have any qualms about saying, No. I know you want me to, but I can't do that. Right.

Don Priess: 36:54

Right. That's a great metaphor. You know, so I'm sure there's time many times you feel like you're all alone, you know, literally all alone in this in this battle. Is there anything you can do like as far as employing the help of family or friends? to I mean, what kind of support would you want? Obviously, that you don't want them to come in? And and, you know, and change, or and shave him? No, but what how can they support the caregiver? Maybe, I think that's so individual that is going to really vary from person to person and from family to family, I actually write about this idea of being a secondary caregiver and the unspoken guilt that secondary caregivers feel.

Unknown: 37:41

And that there are ways that they can step in without feeling like they have to take on the primary responsibility for caregiving. And giving that caregiver opportunities for rest are the most important things even more important to any individual service, taking over the responsibility long enough for the caregiver to half an hour or an afternoon or week that they're free of the caregiving restless. Yeah, the biggest.

Susie Singer Carter: 38:10

See, that's really good, because a lot of like, I didn't this happens a lot to happen in my situation that, you know, one person becomes the caregiver, and everybody else just, you know, goes along there. What, yeah, they drift away. And, you know, and I think it's because I'm guessing I have no, I have no clue. But I'm think that if you could assure them that you're not asking them to take on the full the full bore, you know, that you're just saying whatever you can, if you can come in, and, you know, give me a set, you know, give me a minute. It's like, it's like, my daughter has two little babies now. And you know, if I'm happy to go in and you know, give her some restless, but I'm certainly can't go in and take over, nor would I want to know what she wants to want me to. And I think we need to frame it. So we realized that, you know, it does take a team of people and and whatever you can give as a secondary caregiver is well appreciated, whatever it is.

Unknown: 39:18

Right? I think that's right. The secondary caregiver really helps to share the burden and gives the caregiver the opportunity to offload some of the things. Yeah, can I talk about one other resource that really saved me more times than I can say, which is that the online community of caregivers is so powerful? Yes. And makes such a difference. There's like groups like like Parkinson's, better halves, and my Parkinson's and all of these gives you the opportunity to go someplace and say, I can't do this anymore, and I hate my life. And then there'll be 15 people who say, sweetie, I understand Let's breathe together for a minute. And that sense of being accompanied in the role of

Susie Singer Carter: 40:00

Caregiving, I think makes a very big difference when you're in the weeds and doing it day after day. So agree with you. You know, I mean, look at Al Anon it's been it that was so success. That's like a great program for people that are dealing with something that that is not their problem. But how do we deal with it? How do we accept it? How do we accept that we can't change it, but we can. We can support it in a way that is healthy for us and for them. And I think that's super important. Yeah, you there has to be support. And you need an outlet, you need to be you need to be cathartic and have a place to that you feel safe to do that. Because there's a lot of guilt in saying, I'm overwhelmed. And I hate this day, and I hate, I'm angry. And you know, there were times when I wanted to, I literally, my mom was tiny, and I was like, I'm going to pick her up, and I'm going to put her in her bed. And she's gonna go for a timeout. That's it. You just want to run away from home sometimes. And it's so wonderful to say that and to have 35 people online say, Me too. You bet. Yep. Did I feel better? Yeah, you do. Because if you don't talk to other people, you don't know that you're, you're normal. That's normal. You know, it's why we made the movie because look at my mom, I adore my mom, and my mom adored me. And yet there she is calling me a whore. Right? And how do you? Like, I mean, I wanted people to see that, that that, you know, we can ride that wave? And that doesn't mean any, it doesn't mean anything. It's not real. Right? Not real,

Unknown: 41:52

hard lesson to learn to be able to step back from it and sort of observe.

Don Priess: 41:57

It is and isn't there times where you where, you know, yes, you want to talk about it. You want to share how you're feeling it. But there aren't there times where you just don't want to think about it. You don't really want to talk to a friend and talk about anything else. But that. And I think for people who are friends of the caregiver, they don't know it to you. Like what to say what to, you know, do we want to talk about this? Or do you want to talk about anything else? What are there any suggestions for friends of the caregiver when they're when just talking with somebody who's in that war? Well, I think it's always a reason reasonable to say I'm sorry that you facing something so tough. What's on your mind right now? What would you like to do right now and then put it in the caregivers hands to say, let's talk about playing bridge or buying a new outfit for ya. Chico's? Let's go to Cheetos.

Susie Singer Carter: 42:53

Let's have a margarita. Retail therapy. As always, I am a big fan. I'm a big fan. Read retail therapy and works for me makes no difference. Yeah. And also you're you you like meditation. I see that about you. And you you actually offer a method of meditation that you can download on your website. Do you want to talk about

Unknown: 43:19

it have a slightly it's a free meditation because I thought that it's it's really designed to give caregivers a 10 minute break. Fine, I suggest find a moment when your person is asleep or when your person is, you know within someone else's care or that precious precious time between finishing the grocery shopping, and turning the ignition and going home and sitting in your car for about 10 or 15 minutes, listen to this meditation and just be somewhere else. And it's amazing. How much difference just the mental break can make. And how you manage the day to day physicality is caregiving.

Susie Singer Carter: 44:00

Right. I find it so difficult to meditate. For me it's so hard and I want to do it. And I I know there's a way but do you have any tips on that? Because there's like, Dawn is my best friend. We decided decidedly we were going to learn how to meditate. And we went to this studio that is all meditation. And we could not look at each other because we weren't going to break into laughter because we were like, are you meditating? Not me. Neither.

Don Priess: 44:34

Everything everything else. I haven't.

Unknown: 44:39

Yes, please do tell. There's a very interesting phenomenon called laughter yoga. And it was started in India. I actually was trained in laughter yoga many, many, many years ago and I won't even try to show you how it's done. But essentially it's using the sounds and breath of laughter to disconnect from your life. And you can just look it up. laughter yoga Google. For us. It was really funny and it will make a big difference. I'm going to tell

Susie Singer Carter: 45:19

you also went to it. I dragged on into everything. He's my, he's my BFF I am single ever after he's been through everything with me. And I continue to drive. I you know, I'm, he's Ethel to my Lucy. And I said, we're gonna go take a yoga class. And I'm very, I'm very high energy. I do hip hop dancing. I do step aerobics, you know, but I need to get mindful, right. So we go into yoga class, and we're in some downward dog position. And of course, I cannot look at him. And we are squished up against the floor and we just start laughing but we're holding it in. It's like when you're in like a just a bad time to have the giggles the bad time. Well, we got kicked out of class. Yeah, we might run out of a teacher. Because I think you're I don't think this is not for you. It's really a lot of fun. Oh, my God. Funny hired me to do a

Unknown: 46:18

video about laughter yoga for part two with Terry's

Susie Singer Carter: 46:23

will be your guinea pigs because we are. We were all we want to do is laugh. Okay. Yeah, I have a friend who knows a lot about it. And maybe we can have a little conversation about laughter You should do that. We should do a live we'll do a live or something to get everybody. When that'd be fun. That would be great. Yeah, I think it'd be great. Listen, you guys, I am a type. I'm high energy. It's so difficult for me to slow down and to like, but it's you know, but laughing laughing laughter like they say is good medicine. It's great medicine. I mean, that is that changes your endorphins. And it changes your everything. I highly recommend laughing.

Unknown: 47:04

Great. Well, I expect to report on laughter yoga.

Don Priess: 47:10

Does that ever come into play when you're in the middle of this and everyone knows that you're in a in a very hard situation. And if you happen to get away, or I don't know, for one evening, and you go to dinner, and you're laughing? And you're taught there? Was there ever a moment where you say, Oh, I shouldn't be laughing? I shouldn't be enjoying myself.

Unknown: 47:30

There's something serious going on here. i And how do you get out of that? If you do? Well, I think many caregivers do have that feeling that I'm not entitled to any joy or any recreation or because my partner is suffering. And I think that's mistaken. Because ultimately, the Parkinson's, the Alzheimer's is their journey. And it's not your journey. And even if you've, you know, flesh of my flesh and bone of my bone, you still are separate people. And you don't have the disorder. And you are free to be human in your own way. And that means joy. I think if I were feeling super guilty about that, I might make it make a point of thinking about something that gave my husband a sense of satisfaction and relaxation. My husband really liked to have his hands and arms massaged and calm to him food to him. And so I might make it my business to do that and give him some measure of contentment and comfort that suited what he was capable. I think sometimes caregivers

Susie Singer Carter: 48:44

bring their partners along for those events thinking well, I'm gonna go have fun. So I've got to bring him with me so he can have fun too. But it doesn't work. And then you're both end up kind of frustrated and unhappy. And so it's so refreshing to know, this is this is mine. Oh, Terry, that's such a good point. That's such a good point. I you just triggered a memory of mine. Taking my dragging my mom to things that I thought that she would enjoy. And she didn't because she could she wasn't capable of it. It was too overwhelming. It wasn't it just wasn't appropriate. And I it was a disappointment for all of us. You know, and on the other hand, I mean, I'm going to tell the story just because I learned a lot from it. When my husband's older daughter got married, he worked very, very hard to write a toast to her and it was absolutely spectacular what he was able to do, practice and practice. We went to the wedding together and it was very clear to me that I was there to help him participate in his daughter's wedding. And I did it in a fancy dress. But I was really clear in my own mind that I was not there for a sip of champagne or a bit of wedding cake and once I let go of that, I would say

Unknown: 50:00

able to be comfortable with being there as his person. But if I had gone there thinking, Oh, it's wedding, I'm gonna participate, it would have been so unhappy and so frustrating. And again, neither of us would have felt very, very engaged or very happy. And the way it ends up, it's a very warm memory that I hold very close, how well things went shows.

Susie Singer Carter: 50:24

That's awesome. That's a great, that is a great lesson. Because you, you don't set yourself Self up to lose, you set yourself up to win.

Don Priess: 50:33

And I think going back to just a little bit back was that I think it's important to hopefully that the person that you're, you're caring for your loved one doesn't want you to be miserable. They don't want you to, to not enjoy life. That's the last thing they want. And I think it's sometimes we forget that that they don't want you to, you know. And so

Unknown: 50:57

there are some that that wants you to be miserable. Yeah, that's probably that way before Parkins, you know? Exactly, exactly. Yes. They were in romping awful before. They're going to continue to be grumpy and awful.

Susie Singer Carter: 51:10

Right? Yeah. That's my movie. My mother says to me, she gets lucid and goes, Oh, my God, you got to live. You got to put me in a home. You got to live your life. You know. And that was a gift that she gave me that night. You know, and I was like, Oh, you're going? But not? Not yet. Not yet. Yeah. But you know, so I tried to bring humor into everything, because I knew that was a language that my mom spoke. So humor is very helpful, like music, like things that are visceral, that can get in you've defined things that open those, those those doors that look locked.

Unknown: 51:55

Yeah, I think that's right, and finding your weights. And then if I talk about finding a way to reach in past the dementia, and find the person, and when you can have those moments you feel connected again, and learning how to just walk psychologically walk past the craziness, of being called all sorts of awful names. And remember, how do you feel about your daughter, as she's yelling and screaming at you, she's likely to say, Oh, my daughter is the sweetest thing that you you're a horrible person. And that's weeding your way past the dementia craziness. That's an offensive word craziness, but the past the dementia, and reaching in and tweaking the connection that that person feels with you. Right.

Susie Singer Carter: 52:42

And just just to, to validate what you said about craziness. It's not I mean, it is craziness in terms of like, it's not what you're used to. It's not what they're used to. It's the way that this disease manifests. So it's not a it's not a judgment on the person. It's a judgment on the disease. And the disease is the culprit in the diseases is the Laos. Yeah. It's a crazy situation. It is it is and no one set up for it. No one goes, oh boy, I can't wait to be a caregiver. You know, like, like Lee, like Lisa given says there's no caregiver Barbie, there isn't. Nobody should be there should be but nobody grows up going. I want to be caregiver Barbie, you know. But but it, you know it but we do we grow up and we put our big girl pants on and our caregiver of Barbie hat. And we go and go to work.

Don Priess: 53:39

Right? Yes, we do. As we do. So what's next? What's where are we heading? I mean, I know you've got the websites and you know, continuing to give it any information. And so another book in the in the future? Or where are we going to tell you what my biggest wish is right now, I would love to have the opportunity to talk to doctors, to family doctors and dermatologists and to movement disorders, doctors about how you can engage the caregiver in the treatment and care of your, your patient. I think that insurance and

Unknown: 54:16

given just sort of the way the whole medical system is structured, there really isn't a lot of room. And yet, I can say that with all the great doctors and all the great medical care that my husband had. There was only one medical person who looked me dead in the eye and said you are doing a good job. Just once. And yeah, it should have been more. I should have been seen the caregiver should be seen by the caring technical professionals and they don't have a pathway into it. They don't know how to do it. And I would love to get in front of those folks and say, here are things you can do. They don't take too much time. But they'll make a difference for you. For the person who's doing it caring and for your patient.

Don Priess: 55:00

beautiful, I love, you don't understand, they don't understand. I mean, you know that sometimes it's like they know the physical manifestations of the disease, but they don't know that connection, which is probably the most important thing, which is the human side of it. That's right.

Susie Singer Carter: 55:16

The collateral, the collateral that happens. So anything we missed that you would like to talk about, because this was lovely speaking with you,

Unknown: 55:26

I could talk about that stuff for days on end, but you guys are very thorough, and I think that we've made a lot of really important points that I hope will help caregivers to,

Susie Singer Carter: 55:36

to feel better about this whole process for sure. And I really think that your, your, your journey is is is so unique to what you know that I've talked to other people, we've interviewed a lot of people but going into a marriage, knowing taking it on, full, you know, fully aware of everything is and I'm sure that there are many, many others like you that have done that, but you know, and so or maybe have been are on the, you know, on the fence about it, maybe they are your story can give them a peace of mind and give them a direction, whether it's one way or the other. So I think that in that way, it's very, you're very, very valuable that way. So thank you. Thank you.

Don Priess: 56:22

Definitely, well, definitely look for Terry's book Love dignity and Parkinson's from care partner to caregiver, visit her website, which is seaberry.com and also.com, Seabury house.com. We'll put all those those. It'll be in the show notes. You won't miss it. You'll find everything. Facebook, Twitter, Instagram, all those good things. Yeah. And we can't thank you enough for being here today. You've you've opened our eyes and our hearts. And we really appreciate you taking the time and sharing your your experience in your world. Definitely. Thank you. Thank you. That was really great dawn. She was, I mean, amazing. Not only amazing for what she did, but just there's no this essence to her. That's yeah, she's a very calming and gravitas as I would you say classy and classy. She goes Listen, she shops at Chico's that's my favorite place.

Susie Singer Carter: 57:22

If you've seen our our movie, my mom and the girl, Valerie Harper's wearing all Chico's in honor of my mother, you can see right behind you. She's right in the middle there on the post. Yeah, yeah, he's wearing a Chico's jacket. Yeah, she goes, anyway. No, she was she was terrific. And couldn't it you know, it's interesting how things get in the zeitgeist, you know, with Michael J. Fox, and, and and here we talking to someone with Parkinson's? It's not come up in my purview. No. And now my buddy with my Yeah, my mom is now part of my world, although it's thank God knock all the woods in the world. It's staying very minor right now. Yeah. I wanted to ask her if there was like, a difference between like it is with Alzheimer's, like an early onset Parkinson's, as opposed to your mom being in her 80s. And well, I mean, Michael J. Fox got it when he was very young, very, very young. And yeah, and I don't we don't know how long my mom's had it, you know, but if it's not, man, I can't I don't can't imagine it any more than three or four years. I mean, I can't imagine it's wasn't it's not manifest and, and right now, they're saying it's yeah, it's just kind of remaining. You know, where it is. But, you know, it's, but it's amazing how similar some of the, you know, between Parkinson's and Alzheimer's. Yeah. Sounds like there's a lot of similarities as far as on the caregiving and there's definitely and then even in with with the documentary, you know, when I talk about ableism, I mean, Parkinson's, dementia, same kind of of bias, because because it does affect the cognitive abilities. So once once that's in question, you know, the respect that is afforded is, is not to be found. That's true. So anyway, but I in honor of us today, because I'm all about what does it say? Dawn? There's it says, oh, V. Oh, wait.

Don Priess: 59:24

I know it says love and I think you know, it's in our it's in our title. It's on my shirt, mines and it's in my heart and it's on your shirt. And, you know, why? Do you know why do why don't you tell me again? Okay, I'll say and that is because love is powerful. Love is contagious, and love conquers all we really appreciate everyone really does. Thank you. We hope you like we love you subscribe, you share and also Please consider possibly making a small donation or huge donation to No Country for Old people. We need your support we you know, we don't like to beg but we're gonna beg weak national consumer voice for quality long term care and have a wonderful day bye

Susie Singer Carter: 1:00:27

hey, this is Susie singer Carter and I just wanted to take a minute to talk to you about bed sores. I know but if you're like I was you probably don't have a clue what a bed so really is. Most people don't. I mean, no one told me and I really just assumed it was part of the body that was like the name says sore from Lane in one position too long. And then if you change the position all better. Wrong. That sir is really a euphemism for more appropriate names such as pressure wound, and to keep it as ulcer. Unfortunately, I discovered what a bedsore really was. When my mom was admitted into the hospital last year with a stage four ulcer, that is the worst level, you don't ever want that to happen. bed sores can develop quickly and worsen rapidly and can lead to serious health issues, even death if they're not properly treated, or properly treated. And that includes cleaning and dressing the wound, but most importantly, reducing pressure off the sore by frequently changing the position of the person off of their wounds so it can heal and that can mean propping the person up 30 degrees to the side, far enough to be off the lower back, but not too far as to be on the side hip where there isn't much cushion right between the skin and the bone. This is why I'm so excited to tell you about that sir rescue, which was designed by an amazing woman when jewel a nurse who was tired of fooling around with simple pillows and bulky wedges that just don't work the bedside rescue positioning wedge cushions are uniquely designed to provide ergonomically correct and comfortable support for a sustained period of time without touching the sore and the curvatures. And bilateral angles make it possible for the bedside cushion to be used to support many other body parts as well. You can put the heels you can put it under the head, you can put it under the arms behind the knees, both sides. You can even use it as a breakfast in bed table the curvatures of the bed so rescue fit the curvatures of your person's body and it's made to meet all the patients safeties, and bed bound positioning standards for acute and long term care facilities. I wish I had it for my mom, I really do. So chances are if you have a loved one in long term care facility, or at your home, you may become a pressure injury soldier too. But bed sores should never never get to stage four and one way to ensure that they don't is to make sure that as soon as one begins to develop, you keep the pressure off. You can do that easily with beds so a rescue and you can find bedsore, rescue and many other pressures solutions online at jewel nursing solutions home of the patented bed so rescue positioning which cushions pads and pillows that's jewel je w e l l nursing solutions.com. And when you use the special code and C F O P the entire amount of your purchase will go to support our important documentary No Country for Old people which chronicles my mother's journey navigating the nursing home long term care crisis that literally began with an unreported untreated pressure wound. So take the pressure off yourself and your loved one with the bedsore rescue