Season 7 Episode 173

In this heartfelt and informative episode of Hey, Boomer!, we dive into a topic that touches many but is often discussed in whispers: the evolving relationship dynamics and the journey of caregivers tending to loved ones with Parkinson's disease.

Host Wendy Green welcomes the insightful Terri Pease, Ph.D., a caregiver advocate and author, who shares the intimate details of her transformative journey from a care partner to a caregiver for her husband with Parkinson's. This episode is not just a dialogue but a lifeline for those navigating the complex waters of chronic illness, laced with personal anecdotes, practical advice, and a deep understanding of the emotional and physical toll on both the caregiver and the one receiving care.

Guest Bio

Terri Pease's story reads like an adventurous novel with an unexpected turn. After falling in love, Terri and her partner married within a year and settled into a happy and thriving companionship. Within the first year of their marriage, they made the bold decision to relocate, journeying roughly 1000 miles to the coast of Maine.

With dreams as wide as the sea, Terri and her spouse indulged in their shared passion for sailing by purchasing a modest sailboat. They eagerly anticipated the freedom and exploration that awaited them on the waters. However, her husband's Parkinson's Illness rapidly advanced, outpacing their plans and dreams, and they soon faced the heartbreaking realization that sailing and many other activities were no longer within their realm of possibilities.

Through the challenges, Terri's story is a testament to resilience, adaptability, and the enduring strength found in love and partnership.

Episode Overview

Terri Pease opens up about her own experiences in providing care for her husband with Parkinson's, clarifying the early signs and progressing responsibilities in the caregiver relationship.

We discussed the importance of early communication and planning. Terri talked about the significance of setting realistic expectations and the impact of Parkinson's on relational dynamics.

Terri introduced the "STEALS" acronym, addressing the various life aspects – Sleep, Thinking, Elimination, Affection, Learning, and Sex & other impulse control – that Parkinson's can affect.

We discussed the importance of self-care for caregivers, underscoring the crucial role support groups play in maintaining caregiver well-being.

The episode also tackled practical considerations such as legal documents, financial planning, and the potential of exercise to slow Parkinson's progression.

Take Aways

• Parkinson's disease has far-reaching effects beyond the physical symptoms, impacting every facet of family life.
• Caregivers must be proactive in seeking information, planning for the future, and engaging in open communication to manage the journey ahead.
• Emotional support, specialized care, and community resources are invaluable assets for both those with Parkinson's and their caregivers.
• With knowledge, compassion, and support, it's possible to foster love and dignity within the caregiving experience.

Links

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Get 20% off at Delilah Home through Feb: https://bit.ly/delilahhome-boomer Enter Code: HeyBoomer at checkout

To contact Terri Pease: https://terripease.com

Follow Hey, Boomer! on:

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Email Wendy at wendy@heyboomer.biz

And welcome to Hey Boomer. My name is Wendy Greene, and I am your host for Hey Boomer. And I recognize that some of the issues that we face as we age May not always be easy, but I also know that having supportive relationships with ourselves and with others makes the journey smoother. My goal is to bring on guests who will provide us with wisdom An insight and knowledge for what it means to have dependable, supportive relationships in our lives. Today our topic is about the caregiving journey. From being a care partner to a caregiver, specifically to someone with Parkinson's disease. But before we tackle this topic, I really want you to listen up. Listen up.

I have some exciting things to share with you. First of all, The inaugural Boomer Believer meeting was wonderful. Everyone got to ask questions of our guest, And we gain behind the scene insights into the writing of the Feud. Our next Boomer Believer meeting will be on February The 27th at 6:30 EST. We're going to be talking to Joy Laverde, The author of The Complete Elder Care Planner and Who Will Take Care of Me When I Am Old? As a Boomer believer, you will have access to the Boomer believer Zoom meetings where you get to ask our guests Just about anything you want. You also will have access to the Boomerbanter, which is a monthly community gathering where we focus on a topic and we build supportive friendships and we learn and we grow together, and you're gonna get a Special edition Hey Boomer ball cap. You get all of this for $25 a month. It's really an amazing deal.

I want everybody to take advantage of it. And how do you sign up for it? You go to buy me a coffee.com/heyboomer 0413. So do that now. You don't wanna miss being part of the Boomer Believers. And this next thing I'm really excited about. Okay. So you know that I have mentioned Delilah Home before. They are the company that produces the highest quality and, seriously, I have never had towels like I've gotten from Delilah Homes, so it's the highest quality.

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Our guest today, doctor Terri Peace, wrote a book called Love, Dignity and Parkinson's from care partner to caregiver. Terri Peace is an author and caregiver advocate for people who are caring for someone with Parkinson's. She posts information, support, and resources on her website, Which is terri peace, p e a s e, .com, also will be in the show notes. And we're gonna hear Terri's story of moving from a care partner to a caregiver for her husband who was diagnosed with Parkinson's before they even met. Having read her book, I am much more aware of the progression of the disease, but more specifically, How it impacts the person with Parkinson's and how it impacts the caregiver and the couple relationship. If you know someone who is caring for someone with Parkinson's, you will definitely want to point them to this episode. They can join now if you can reach out to them and listen live, or they can watch the recording on YouTube or listen on any podcast channel that they prefer. So let me bring Terri on And say hi, Terri.

Hi, Wendy. I'm so glad to be here.

I am so grateful for the work that you're doing and what you're gonna share with us today. So why don't we start off with you telling us your story of how you met your husband and started on this journey?

Okay. Well, you know, we met sort of in the most modern kind of way. And, after spending a long time questioning whether we Ought to be together and ought to be, you know, dating. We ended up doing so, and, I knew before I met him that he had Parkinson's disease. And like most people who have heard of Parkinson's disease, you know, I had an idea about it. But What I can tell you today is I didn't know what I didn't know. And I met him, and he was my guy. And Yeah.

A long story short, we married. It was within about a year and started a very happy and strong relationship That was then we decided that we were gonna move about a 1000 miles away from where we'd been living and To the house that that I live in now, we got here and we bought a sailboat. We thought, okay. Yay. We're gonna go sailing, and, you know, we're on the And we had, you know, a little sailboat. Nothing too fancy, but we were really excited about the idea of it. And then, of course, Parkinson's just galloped along, Just full steam ahead. And before we knew it, it was very clear that we couldn't sail, and we couldn't do an awful lot of things.

And over time, More and more and more of what we anticipated as being a life together. No. A late life marriage and our our life together Wasn't gonna happen.

Well, that was gonna be one of my questions to you, Terri, is how much did you even know about Parkinson's before you Met, married your husband, and and how much did you have to learn?

Well, I had a ton to learn, and what I realized is that some of it was Things that he didn't even know. I mean, he introduced me to his doctor, and, you know, she gave me some ideas, but What I didn't know were the details of caregiving. And the more I talk to caregivers, the more I realize that most of us enter into this experience of being a Parkinson's caregiver with very little of understanding of what we're going to be experiencing and Surprisingly little information and support out there.

Yeah. Your book definitely opened my eyes to some of the things that could come up, but, You know, you met your husband when he was already well on his way with Parkinson's, but what would you say to somebody Now that recently got this diagnosis, like, what would be some of the first couple of things that they should start to think about?

Well, you know, the first thing I would say to the caregiver is take a deep breath. Parkinson's is a very long haul in almost every case. And so there's nothing that you have to go barreling right into doing. And then I recommend in my book and I recommend other places that really the first 2 things that you do. Really, 3 things are first, to just be with your partner and Recognize together. Holy Christmas. This is not what we'd planned. We have no idea what this is.

And if in fact you can say genuinely, I'm here with you. You won't be facing this by yourself. Say that. There's one important thing that you shouldn't say. Many people right away end up saying, oh, I'll never put you in a nursing home. I'll take care of you at home all the way through. Don't worry about that. And it's just not a realistic promise that you can make early on in that situation.

You can absolutely intend not to have a person live away from home. But, in fact, there are circumstances, and I talk about them in the book and I talk about them other places, where the best Care is not the care that can be given 1 on 1 by an untrained person. And so it's more complicated You think. The promise you can make is I won't abandon you. I won't leave you to deal with this by yourself. I will be here by your side. And that's a reassuring promise that's you can you can commit to that. You can't Staying with your six four husband if you're 5 three and they start to have frequent falls.

You can't catch them. You

can't keep

it safe. And so those are the kinds of things.

Yeah. Yeah. So the communication that you have to have, You know, I think, hopefully, you're in a strong relationship when you first get this news, but that Seems to me that's gotta be so crucial to talk about what's next. What do you want? How are you, you know, how do you wanna be cared for? It's not just What can you do, but how do you wanna be caring for your partner?

Absolutely. I mean, there are 2 of you, and only 1 of you has Parkinson's. And so that early conversation is very important. And, really, you can't even ask all the questions right away because you just don't know. Yeah. And then there's a wrinkle that is important to understand. Parkinson's is a brain disease, not a body disease. And people think tend to think it's, oh, it's about the spine and the muscles and the bones, and that's why a person has trouble moving and so forth.

And yet what it really is is about the ability of the brain to control all sorts of things. And some of the things that the brain stops being able to control as well have to do with the relationship itself. And so The the the things that you do to solidify your relationship and your presence in the relationship early on are really important because your partner, If they're like most people who have Parkinson's, over time, will become less and less able to be engaged with you.

Yeah. I read that, Terri. That's gotta be even twice as hard to be a caregiver for someone that can't return Thanks and gratitude and that kind of stuff. Yeah.

Yeah. I mean, it's really hard, and they could love you from head to toe. And yet if Parkinson's takes away the ability of the frontal lobe to do those processes, to recognize your face, To have a facial reaction that says, oh, I'm so glad to see you. You know that look you get when you walk in the door and your loved one goes, hi. You know? That goes away. And so you have to rely on what you know about the person, what you know about your past, And find your way into restoring and retaining your connection with your partner despite the fact that they can't as easily give back what they once did.

So, like you said, I mean, we all are aware of Parkinson's and the tremors and, you know, Tremors and stiffness and sticky feet. Right. We're aware of that. Mhmm. Were you aware of this inability, the facial Being frozen and not able to show emotion?

Not at first. Not at first. One of the first this the the neurology people call this non motor symptoms. Motor symptoms are the mobilities, the movement stuff. Non motor symptoms are all the rest. I was aware of the impact on facial expression, and I remember, A friend who came to be with us when we were getting married said, I don't think he likes me. And I said, what do you mean? Of course, he likes you. And then I realized as we talked, she said, but he never smiles.

He never looks at me, and I realized, that's Parkinson's. And he looks Still face is what they call it.

Even when you first got married?

Even when you fur we first got married. And I think in our connection with each other, that was more Available. But for someone new under you know, when, you know, strangers, it was under stress, we're getting married, you know, all of that, his face just became much more still. And she could not detect the person under the still face. Wow.

So if you

Know that that's happening to your partner and they don't yet have a diagnosis. All of a sudden, you think, what's happening to my marriage? My partner doesn't care about me anymore. He doesn't respond or she doesn't respond anymore. I, you know, tell them some good news, and I don't get much of a spots, and you start to feel like things are falling apart in your household. It's only after you get the diagnosis that you realize That has nothing to do with their personality. It has everything to do with their brain. And then you may end up having to restore Things that have kind of come apart because of the impact of Parkinson's.

Yeah. Because you talk about that in your book that that Sometimes, that is the symptom that shows up before a lot of the tremors, and and it can break up a marriage when you don't even know that the person has Parkinson's yet.

That's right. I'll never forget the times I talked to caregivers who who tell me I didn't know that was going on. I thought he was leaving me. I thought our marriage was falling apart, and we'd always been so strong. And so the sense of loss is one of the early experiences. Your doctor's not gonna tell you because in many times, the doctors don't really, Sadly, don't really get it. My my big wish is at some point to stand up in front of neurologists and say you need to tell the care partner, The caregiver of what's coming and help them be ready to be able to sustain it, to to sort of stay the course.

I'm glad you said that term care partner because you mentioned in, you know, the difference, the care partner and the caregiver. Can you describe that a little better for us?

Absolutely. When you're a care partner, there are 2 of you working with the issues around the the the disease. I Spent time with a family member who had a, you know, significant diagnosis that was, you know, worrisome, but we were in it together. We both did cooking and traveling and making appointments and all of that so that it was a partnership of 2 grown people with grown people's capacities, doing the things involved in helping my family member get well. My family member did get well. Thank you, modern medicine.

Mhmm.

But, it was very different than being a caregiver. When I was my husband's caregiver, they became less and less unless that he could take care of for himself. And when you become a caregiver, the burden, the responsibility, the Blessing, if you wanna call it that, all risks with you to keep your household and your relationship and their well-being, their health in order, and it's all on you and the people that you can recruit to help you.

So there is the next Step. Right? So now you've got some of the education about what to expect, and you think I'm gonna be with you. I'm gonna be your here by your side, and you realize you can't do everything yourself. Right.

And so how do you reach out for help? That's really, really important because many times I talk to new caregivers whose partners are newly diagnosed, and they say, I am gonna be like a Parkinson's warrior. I'm gonna do absolutely everything I can to protect my beloved partner from this this awful disease, And I think they burn themselves out.

Of course. And many exhausting.

It is exhausting. And many families are private, And they think, oh, I don't wanna tell my kids, my neighbors. I don't wanna burden people. But then you've isolated yourself. And then 2 months, 2 years, more than that down the road, you're carrying the entire burden and you look around and everybody else is off living their lives. I believe it's really important early on to say things and and engage people in some of the simple things that helps them See the person with Parkinson's as the condition is progressing so that they're not surprised when you need help to help them get into the car to get to a doctor's appointment, Or you need help to help them get up the stairs or you need help to make a decision to move to another house. If you've never talked to people before, Then you're still on your own.

I've I've heard from people who say that their their person that they're caring for Doesn't want anybody else in the house to help. They just want their partner to help. Right. How do how do you navigate that?

Well, it's a tough one because sometimes you cannot do what your person wants. And I think there are times that have to say, oh, I understand. And if I could do it all, I would, but I can't do it all. So these are our choices. The example that I use is, If your partner asked you to lift the refrigerator, they said, you know, pick it up, move it. I need you to move the refrid you would not feel Worried, guilty, responsible for doing you know, you you just would say, I wish I could, but I can't.

Right.

I wish I could, but I can't. How else can we solve this? And I think as a caregiver, you have to be that certain in your own mind When there are things that you've come when you've come up against your own inability and when you aren't feeling guilty about it, Then you don't have to be, snippy about the way you say no. And a lot that that preserves your relationship Chip a lot. If you have a comfortable way of saying, makes sense to me, I would want that too. Can't do it. What do we do next? I mean, you'll be more loving than that.

Of course. Right. Right. But And maybe you know? Let's be real. Sometimes you may feel it snippy like that, and it comes out. And then you have to yeah. It's smart.

Dial it back in. Reel it back in.

Alright. Right. I wanna ask you about your acronym, STILL, but I wanna share some of the comments that we're getting. Tara, Lisa says, Terri's book is invaluable for anyone that is a caregiver for Parkinson's. I love this woman. Oh, I know. I Sheila says she finds some of the same With heart disease amazed at the minimal support for care providers from their physicians. Someone else says search out as much information as you can as early as you can.

Otherwise, you will be blindsided when things change dramatically. Sheila says I love that I won't abandon you statement. Yeah. So many great comments here. Some well, Phyllis has to leave, but she's come back, Phyllis. We have this recorded. So, Terri. Yes? Your acronym, STEAL, would you go through that with us, please? I think it's important.

I will because The reason I came up with this acronym is that the doctors talk in scientific categories about the things that change with And since they will say to you, well, there are going to be changes in executive deficits, you know, functionings. Or then they use these, you know, $10 words, and I learned them in school too, but they don't help you very much. And so STIEL stands for sleep, thinking, elimination, affection, learning, and sex and other impulses. And all of those 6 things are changed by Parkinson's, and those are the sort of elements of of Family life that are influenced by Parkinson's. Sleep, because sleep disruptions are very, very common in Parkinson's disease. Something called REM sleep behavior disorder where a person will act out their dreams.

Mhmm.

And so, You know, they're fighting off the, you know, bad guys, but then they suddenly, they're fighting off you when people have been injured. And so you need to be aware of that Possibility, your doctor needs to be aware of that, and it's important that you speak to a knowledgeable neurologist, which means a movement disorders specialist, To make sure that you're getting the help that you need to support your partner's sleep. And I'll just say as an aside, I emphasize a movement disorders specialist because community neurologists have to know about a huge array of changes in the brain and the nervous system. And the details about Parkinson's treatment and Parkinson's intervention are so specific that you need a doctor who's had additional training and additional knowledge and research Just in that area. There are not a lot of them, so that's one of the first things you should do is get yourself an appointment with a movement disorder specialist.

Good to know. Thank you.

So Sleep because you need your sleep. Thinking, your partner's ability to plan, to think, to make decisions, To understand what's going on around them, to feel familiar in space. I remember my partner, my husband, would ask me to help him shave, and he'd miss a spot. And then he'd look in the mirror and say, okay. Shave that spot. I'm standing over here because His awareness of himself in space had been changed by the way Parkinson's affected his brain. So I had to help him remember. Okay.

Turn toward me So that your face is by my eyes, and I had to sometimes be quite that concrete. It was this incredibly smart man, and it was just you know, that capacity To understand his position in space was gone. Illumination, bathroom problems are really huge. Constipation occurs in Parkinson's. Because just like your the motor the muscles involved in walking and talking and so forth, The muscles involved in elimination are also affected by Parkinson's. And so constipation can become a very huge problem, and it's very important to be on top of that. I talk about some of the ways that you can address constipation both in my book and other places, and people can write you know, can can join my list and ask questions about things like, you know, What's the best way to address or to prevent difficulties with constipation? That's a big issue because when your partner Cannot manage their own body functions. It changes things.

And the relationship. Right? You're you're

the relationship. Yeah. And if they aren't even aware that it's a problem for you, then it becomes compounded. Yep. Affection. This is really important. Their ability to feel empathy for you, to care about you. It's like the the the inside parts that say, this matters to my loved ones, so it matters to me, Disappears.

It sort of just erodes. And so suddenly you have this person who seems really selfish. It's not selfishness, but it is A deficit that's caused by loss of dopamine. That's the brain chemical involved. Learning. It's very difficult for your partner to remember the things that you say to them, but I told him to feed the dog. How could he forget? I wrote a sign, And yet the ability to go from feed the dog, find the dog food, open the dog food, You know, all of those many, many steps, remembering being taught to do something that gets distorted by Parkinson's. And then Sex and other impulses is a whole range of impulse control issues that come up with Parkinson's.

Some people become sexually very elevated And, demanding and are not it's just not always easy for them to take no for an answer, and so that's that's a huge issue in a relationship. On the other hand, sexuality can just disappear or can be deeply reduced and other impulses, impulses related to gambling, Spending, sexual acting out online. There are a lot of impulse control issues that come up as a result of Parkinson's as well, And your doctor needs to warn you about that. And there are specific medications that, heighten these problems, so it's important that your doctor warn you if they prescribe this class of medications to say, keep an eye out. If there's a lot new of new sexual behavior. If there's a lot of gambling or spending, let me know right away. Don't let that get Oh, don't let that go on. You need to talk to a doctor right away if you see that.

So And

that and that's one of the biggest problems, right, is the Doctors don't give you this kind of information.

They really don't. I mean and to some degree, they've not learned to think about these symptoms In the kinds of in in the way that that relates to how it affects a relationship. And one of my big wishes is to get in front of doctors and get in front of movement disorders and family doctors and say, Pay attention. When there's Parkinson's, you need to be paying attention to what the caregiver needs because one of the things that research has shown us is that A healthy caregiver and a well informed caregiver leads to better medical outcomes and longer well-being for a person with Parkinson's. So taking care of the caregiver is taking care of your patient too.

So I have to ask you. I know you don't focus a lot on the disease itself In your book, you focus on, you know, what what you need to know as a caregiver. But I have to ask you, All of the symptoms that you mentioned in the book, do they always all appear in that person with Parkinson's? Or do or is it kind of like a menu of things that could appear.

It is a menu. The it's not predictable. People want to know, well, what stage is my partner? And yet It varies so much. The the symptoms come and go. They aren't always consistently there depending on the medication. Sometimes the medication will damp them down. So each person's presentation of Parkinson's is is unique. And so there are some telltale Signs, but that doesn't mean that every person is going to show all of these.

Some people have Parkinson's dementia. Not all not everyone develops Dementia over the course of Parkinson's.

Okay. Alright. Well, that's good to know. So so much of what you talk about centers around this whole idea of acceptance, at least the way I read it. You know? Acceptance of yourself as the caregiver, acceptance of The changes that are going on in your partner, acceptance of the loss of the of the future that you thought you had. You know? And it's It's a roller coaster ride. I can imagine.

It is.

How did you deal with that? I mean, you were in a new marriage. It's a new relationship.

Yeah. You know, in in parenting a young teenager and in a new city, and there are a lot of changes that I had to deal with. And I think I was lucky because I had worked with people with disabilities most of my life off I shouldn't say the whole time, but often on, I'd worked with people believes in supporting staffs of people who work with disabilities. And so I had a sense of a Place in myself where I could see the difference between my husband and my husband's disease. And making that Distinction was really, really important because then it could be the 2 of us facing this rotten thing that we're dealing with.

That's brilliant.

It wasn't easy, but there were times that I said to him, look. You know, I didn't cause your pardon. And I know this is really rotten, and I know you hate how you're feeling about this, but I didn't make this happen. How can we work on this together? It takes a kind of emotional maturity to do that, And it means you need to have support. You need to have friends. Ideally, you would have hope from your help from your religious community, from your neighbors, And that's why it's so important not to isolate yourself. And you need to have your 1 person who you can call and 2 things. You can trust them to say, I can't talk now, And you can trust them to listen when they can.

And for me, it was my older daughter. And there were days where if I hadn't had a chance to sit on the stairs outside our bedroom and call my daughter, I don't know how I would have managed, but just the fact that I could call on her when I was just really feeling like I was, you know, struggling Makes a big, big difference. And, you know, if it's your parent who's doing this caregiving, sometimes just being there to say, I know it's hard. You don't have to fix it. You can't fix it. You don't have to rush over and and and take over. But the main thing you have to do is not minimize it. Not make the caregiving person think, oh, it's not that bad, and why are you don't do that.

Yeah. Yeah. Because it is. Lisa says, it's amazing, but coming to a place of acceptance makes all the difference in the world. It took me a long time. But now that I've gotten there, I can breathe and stay out of conflict with my husband much easier. I mean, I think what you said, it's brilliant to Somehow be able to separate. This is my husband, and this is the disease.

Yes. Wow. Is there Are there support groups for the caregivers to help you with that?

Well, there are sporadically. You know, I shouldn't say radically. But in different places around the country, communities can have support groups for people with Parkinson's and support groups for caregivers. I think one of the challenges is that if you're a caregiver, you wanna be able to go to a a support group where you talk to other caregivers freely Without the people with Parkinson's in the room, it's very difficult to have a conversation about how bothered you are by someone else's bowel issues if there are people who have those same issues in the room. So you need to have a support group. And so, yes, there are. There are some online groups as well, and something that I hope to do it towards end of this year is to create some online some group support as well for for caregivers because people need to talk to

each other. Just Having somebody else say me too. You're not the only one. Well and you do have some resources, Terri, about That that could be helpful. So can you tell me about those?

I do. Right. I have a website and a blog, both of which are directed Towards meeting, specific questions that people with care who are caregiving questions come up. But I also have A regular email newsletter that people can join, and once they join that, they get emails from me about various topics that the group members have brought up or topics my own experience or sometimes just other things that have come up in the news. Some other things that I've been working on will come out later this year, but there's something that I've been working on recently that I'm very excited about, which is that I'm starting a 21 day program for people who've been caregiving for a while mainly to help them reconnect with their partners and themselves, and I'm calling it renewal and resilience. And you can sign up for this. And once you do, you get a series of emails that actually help you do the mental reframe that I talked about So that you begin to see well, that's that's him, and that's the disease. And it really puts you I mean, the people who've gone through it have said that it puts them psychologically and emotionally in a different place to be able to do this really hard thing.

It sounds amazing. Is that available yet or no?

It's coming out on Friday. People can Oh, this Friday? This Friday coming up Good. I know this is recorded, but just in a few days, just in time for, National Caregivers day, and this will be launched so that people can sign up for it then. And, actually, it's set up in such a way that you can sign up for it anytime. It starts on a Monday, and then you get the 21 days of emails. And I respond to some of the things you know, I ask questions and people respond. And it's a way of getting a a reset on what is this you're facing. What is this you're dealing with, and how can you do it in a way that helps you still remember who this person is? Mhmm.

My very favorite comment from someone who had taken this A little bit ago is that when she said, I'm hugging and kissing my husband more. Aww. Well, like, oh, there he is. And that's what I'm with people because when I found that, it made a very big difference.

Yeah. Right. He's still the man you love. It's not the disease. Right. Yeah. Marybeth has a question. She says she's currently doing The 30 day challenge? Is that something you had offered? Mhmm.

Okay. And she says is the 21 day program different?

No. It's the same one. It's 21 days of emails over 30 days. I I'm changing the title to make it more accurate. So yes. Hi, Marybeth. Nice to see you.

So there was some discussion about, like, finances too. Like, if your has right? If your husband had been doing a lot of that, now he's not able to. So how how did you handle that?

Well, there are a couple of things. First of all, he was a lawyer, and so he was really conscious of these things. And so I didn't have to urge him to set up power of attorney, both Financial power of attorney and health care power of attorney. Those are 2 different documents and not and but a few states merge them. For the most part, they're separate. And once those are signed, those create the the foundation for you, the care caregiver, care partner, to be able to manage the finances. But I learned and other people have learned that you also need to go to your bank and say, I have signed notarized Power of attorney from my person. What else will you need for me to be able to pay our bills, for me to be able to to draw money? And Find out what your bank's own paperwork is because what I learned was that the bank right down the road who knew us very well Still required me to come up with more paperwork and to sign and for him to sign.

This is important. If you wait until your partner's impairment is showing, The bank may say that they're not able to, or the lawyer may say that they're not able. You need to do those things early on, and I actually have a list of things In my book and a list of things that people get when they sign up about what are some of the first things that you need to do to secure your finances. Understand the difference between Medicare and Medicaid is also important because we hope that Medicare covers long term care. It does not. And that's such an important thing to understand early on because you've got to organize your finances in such a way that if you can't Cover the costs. You use the things that we've been paying taxes for all our lives to take care of your partner, and that means that you need to talk to an attorney about Setting up your finances properly. I'm not a lawyer.

You know? I can't

talk Right. Right. Right. Right. But it that's an important piece of information, Don't know. You know? You've got to do this while your partner is still able to participate in that conversation. Otherwise, it's could really put you in a bind. Some of this can be so overwhelming, Terri, and, you know, I want to leave people with some positivity, some hope.

And and so I wonder, knowing that there's no cure for Parkinson's and for so for the Parkinson's patient. I don't know how you would describe hope, but what are 2 or 3 takeaways that you could leave for the Parkinson's Caregiver that might give them some hope.

Well, there's some things about there's a brand new book out about diet and exercise Size that turns out that exercise is the one thing that we know that actually helps to slow the course Parkinson's disease. And this is relatively new research. There's a new book about it. I didn't write it, but if someone signs up, I'll be talking about it next week in the emails that come out on my list. And you can find out about this book, and it describes not only that exercise as important, the the specific details of what kinds of exercise. My husband rode a stationary bike every day for years even after he went to memory care, and I know that that slowed the progression of the disease for him. So it's not hopeless, but, you know, we get old. We get ill.

And and Parkinson's is not the only thing that could have happened, but this is the one that happened in your life.

The thing

is that you can continue to have a loving relationship, and you can continue to be you.

And I think the thing I see in you is that You learned from this experience of caregiving for your husband so much so that now you wanna share this

Yes.

With Other people and help so your life enriched in a way. Yeah. In a

way it did because I wrote this book because I thought I learned all these things. I can't keep them to myself, and I didn't know I had a book in me, but it was very exciting to discover that I did and to discover that people wanted to read it. And so I'm really happy to get it out to other people. And I'm really happy to reach out to caregivers because it's too much to do by yourself, And there are other people out here to support you.

So Terri's book is called Love, Dignity, and Parkinson's From care partner to caregiver. Mhmm. Love, dignity, and Parkinson's. And it's It does go into a lot of details and resources and ideas. I I would highly recommend it if you are Facing this, on Terri's website, which is terripiecepease.com, You can find her blog. You can find, this 21 day course or

do you

call it a course? It's a program. Or a program. Okay. Sign up for her newsletter. I mean, all of that is there on her website. And and you mentioned to me, Terri, that you also will do some coaching for.

Yes. I will. I mean, I don't have a lot of slots for that, but sometimes people just need a conversation or two to be able to talk through What is it that's really getting them stuck? And I'm really happy to do that, and they can sign up for that as well on my website. You know, happy to be able to to offer that as well.

Well, certainly, your empathy came through in this conversation, so I think that I can see how you would be a tremendous source of support For somebody who's having to deal with this. And from some of the comments that I've seen too, people that have worked with you or taken your programs, they also have Benefited tremendously, so thank you for that. Yeah. You also have a a Facebook page and an Instagram page. Also, Terri Peace, but it ends with PhD. Right. And you told me you just launched a YouTube channel.

I just did. I just put up my 1st YouTube, and it was kind of an experiment. But I'm going to be putting up YouTubes because I realized I love to talk to people, and You can't get out necessarily, so it helps to hear a voice from across the Internet telling you, here's how you can Solve that problem. Here's what you might need. Here's how you can help and find help.

Yeah. So lots of places that you can find, Terri. Thank goodness. I love that we got so many comments on this episode. Lots of people were helped by this. You know, if you're listening on the podcast, please go ahead and leave your comments there. Let us know what you learned, Rate and review, that helps other people find it. And share this with your friends or family members that you know are going through this or may beginning this Journey.

There's so much resources and so much to learn about being a caregiver, particularly To someone with Parkinson's. Let me remind you as we switch gears to please become a Boomer believer, And join us at the end of this month to talk more about actually what we're gonna talk with Joy about On the show next week, which I'll mention is about being a solo ager. And not only who's gonna care for you, But are there other people in your life that may be asking you to be there for them should they need extra care? And, You know, having that conversation, what are you willing to do and what are you gonna need? So, that's gonna be what we'll talk about next week with Joy. And then when she's on the Boomer believer, Zoom meeting, you can ask her all the questions you want about that. And the other thing is the Delilah Home. Thank you, Delilah Home, for being such a supporter of Hey Boomer. Go and get your 20% off On any purchase you make there this month, it's going you go to bit, b I t.ly /delilahomedashboomer, and then you use the code heyboomer at checkout to get that 20% off. Thank you so much, Terri, for what you shared with us today.

This was really a wonderful, helpful episode.

Thanks for having me.

Oh, it's my pleasure. I'm so glad it worked out. And each episode of Hey Boomer is an invitation to listen, Learn and apply the wisdom gained from the episode to your own life. The path ahead may not always be easy, but it's Traveled best with support and shared insights. The Hey Boomer Show is produced by me, Wendy Green. And the music that you heard at the beginning was written by Griffin Hanrato, who is a student at the North Carolina University School of the Arts and my grandson.