When Parkinson's Changes: How Home Care Adapts Over Time

In this episode of Parkinson’s EmPower Talks, our guest is Ruth Busalacchi, Owner and President of Synergy HomeCare.

“Parkinson’s doesn’t stay the same. Neither should care. Today, we’re talking about how home care adapts over time—and how families can plan proactively instead of reacting in crisis.”

Ruth’s EmPowering message is, “Avoid the ‘cross your finger’ plan. Be proactive: get all the information you can—ask your friends, go online, reach out to Wisconsin Parkinson Association, and get all of those resources in your back pocket. Then have a conversation with your family: here are my thoughts in the moment; here’s what I want to do. It’s a hard conversation to have, but then you are less likely to be reactive and more likely to be proactive.”

Synergyhomecare.com
414-763-8368

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Wisconsin Parkinson Association 
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Transcript

SPEAKER_00 0:02

Hello friends, welcome to Parkinson's Empower Talks, a journey of empowerment and understanding for living your best life with Parkinson's. Kick back, relax, and get comfortable. We're here to make your Parkinson's journey just a little bit easier. I'm your host, Dacey Reimer. I'm a nurse practitioner specialized in movement disorders for the Wisconsin Parkinson Association. The Wisconsin Parkinson Association's mission is to provide hope, community, support, and resources for people with Parkinson's and their loved ones. Welcome to Parkinson's Empower Talks. Today, my special guest is Ruth Busilaki. She is the owner and president of Synergy Home Care of Southeast Wisconsin and a friend of WPA for decades. Welcome, Ruth.

SPEAKER_02 0:52

Thank you so much for having me today.

SPEAKER_00 0:54

So glad you could take the time out of your busy day to be here with me. I appreciate you. You bet. Parkinson's doesn't stay the same, and neither should care. Today we're talking about how home care adapts over time and how families can plan proactively instead of reacting in crisis. Ruth, you are a certified senior care advisor. Tell us a little bit more about your background and what led you to Open Synergy Home Care.

SPEAKER_02 1:22

Sure. So I think my background goes all the way back to my younger days. I started as a caregiver myself in the early 20s, and I've always been in the industry of helping people live as independently as possible. Before I dove into home care specifically, I worked in group home settings, nursing homes, day programs, all of those types of settings to help people live as independently as possible. And I worked for a social service organization for about 10 years before I started Synergy. And at that time, what I was doing is I was opening and licensing adult family homes and community-based residential facilities. So with that background, it was my responsibility to see what someone had in their need of care and supervision and make sure that they had the right environment surrounding them. And again, to live as independently as possible. So it was that background, and I think we all do this in our lives, that affected me personally. Because about 20 years ago, my father was diagnosed with Parkinson's disease. And coming from this industry, I knew that in the future he was going to need more care and supervision. My mother, as his caregiver, was going to need more support. And most importantly, I wanted to honor my father's dignity of choice. You know, he did not ask to have a chronic health condition, but I knew there are ways in which he can lead the decisions. Right. Absolutely. So that was really my my um experience with my parents that ultimately when my father did pass eight years later, it inspired me. And I thought I can help other families on their journey. Right. Whatever their journey is, because we all want something unique. So that's what inspired me to open Synergy Home Care back in 2010. Right.

SPEAKER_00 3:44

You, you know, you shared obviously that experience with your father shaping your mission. Do you want to tell us a little bit more about that story?

SPEAKER_02 3:54

Yeah. So I decided to create a mission statement for Synergy Home Care and is to provide unique and dignified care and to educate our community about the options available. So obviously it's that social service model. And I know that seeing things that were subtle changes, perhaps in my mother as his caregiver, some signs of fatigue, or subtle changes in my dad, then I would just sit down and I would say, okay, mom and dad, here's what I see, here's what I'm observing, and here are your options. And there were always more than one. And then they, and particularly my father, could think about that and say, okay, in advance of any kind of a crisis, this is what I'd like to do, this is where we should go. And here's what we need to do to address any cost. You know, are there funds out there? We did that for eight years. And I am convinced when he passed, I'm convinced that we were avoiding more crises than we would have if we had just allowed things to happen without being proactive. Sure.

SPEAKER_00 5:06

Oh, that makes complete sense. You mentioned you talked about helping him recognize those subtle early changes. What are what are some early shifts that uh caregivers should watch for with Parkinson's?

SPEAKER_02 5:19

You know, it's an interesting thing. I think the individuals who are closest to the person with Parkinson's disease may be the least likely to notice the subtle changes.

SPEAKER_00 5:30

I hear that a lot. I would hear that a lot in my clinical practice as well. The children would notice more, or people who are, you know, visited every so often, they would notice those changes because when you're in it, it's it's just evolving.

unknown 5:44

Yeah.

SPEAKER_02 5:45

Right. We're adaptable creatures. We just are. And, you know, often our caregivers are the ones that notice the subtle change before the family members do who are living with that individual. But it could be something simple. It could be, you know, they're coughing more frequently. They are a little bit slower to getting up out of a chair, or um, you know, you get that sense. You can't figure out what it is, but you get a sense that you're a little more nervous about their gait or getting in and out of the shower. And again, we always look at the family members who are providing the primary support. Do they look fatigued? Right. Are they showing signs of confusion or distraction or are their health issues sort of cropping up? Those are signs, the subtle signs.

SPEAKER_00 6:36

Right. Yeah. Why are those changes, those subtle changes, so often missed?

SPEAKER_02 6:44

Perhaps it's denial. Perhaps it is that fierce sense of independence that we all have. We fight against it. We may recognize it, but we fight against it because you know we want to believe that by fighting against it, we're maintaining our independence when in fact we might unintentionally be um putting ourselves at risk of actually losing some of our independence because of a fall or a or an injury.

SPEAKER_00 7:21

Yeah, I think we see that sometimes even in that decision making to use it like an assistive device. You know, it's just that that's seen as something, you know, that people don't want to have to use. But yet if it can keep you independent longer or make you exercise for a longer period of time or just keep you safer, that's your independence being maintained as well. I completely understand.

SPEAKER_02 7:45

And I often tell the person with the condition, you know, everybody's worrying about you. And you want to maintain your autonomy and dignity of choice. So by acknowledging their worry, what is it, doctor, that you're worried about? What is it, daughter, that you're worried about? And then addressing it kind of keeps everybody off your back. You know what I mean? It kind of lets them back up because you're like, okay, I get it. Here's what I'm gonna do. I'm gonna use my walker because I don't want you worrying about me all the time.

SPEAKER_00 8:20

Right. Just having that open dialogue, that open conversation and keeping it both ways so that you're able to hear it, but then also able to consider um some of the advice that's given as well. Yeah. So you uh when you and I have talked many times, and uh you often talk about care in three phases immediate, midterm, and long term. Can you walk us through what each of these stages look like?

SPEAKER_02 8:48

Sure. So since I opened Synergy Home Care back in 2010, I have seen a common thread. Often we get a phone call at Synergy because somebody is looking into care and supervision because something happened. Right. So what prompted your call is often what we ask them. And so that's the immediate, right? And we might hear things like the most common thing we hear is I had a fall or my father had a fall. Um, and that led to a potential change in condition, temporary or permanent, we don't know. Sometimes we get the call because it's the primary caregiver, maybe it's the spouse, right, was hospitalized. And now that's the new change of condition. Now we're in a bit of an immediate need. And so we offer ideas and support around that immediate need with the goal to stabilize, to reduce risks, to get everybody kind of in a more midterm scenario.

SPEAKER_00 10:04

I I definitely can relate to that. Um many years ago, even with WK, we had a phone line, kind of a crisis line that people could call into. And it was always a little surprising how many times people were just reaching out to us for the first time. And um, but it was in crisis, right? And crisis mode of something coming up. Um, and um that's when I was like, okay, we definitely need to get these resources into people's hands early so that at least you have the phone number of who to call on the refrigerator when the time comes, you know, which is just it's so empowering to know that it's there if you should need help and doing that, you know, proactively, like who would I want to come in my home and provide care? You want to have that choice and and have at least have the had that touch base with them, you know, and and really kind of know what they have to offer before you need it in emergency.

SPEAKER_02 10:58

So I can totally really think that's such a good point. And I always make a point of acknowledging and applauding the family member or the individual who is calling in advance. Right. I just learned of a diagnosis. I'm going to be moving out of town at the end of the year, you know, that proactive. Let us think about um as a family what we need to put in place. And I just really think that's so smart, that plan B.

SPEAKER_00 11:29

Yeah. And when they're when they're contacting you, what's like really happening for them at that time? I mean, are they um, you know, is it kind of what's that process, I guess, when they're reaching out to you?

SPEAKER_02 11:43

More often than not, it's a short turnaround. Because either they are calling us when their loved one is about to be discharged from the hospital or maybe discharged from rehabilitation, um, or something very immediate has happened. And so, again, to your point, if they had this information at their fingertips in advance of an emergency, we would already have a relationship and we can kind of get to what their needs are quicker. Whenever we have to respond with some level of caregiving or some level of supervision quickly, the disadvantage of that is that we can't match up the ideal personal assistant or caregiver, right? We have to just sort of respond with what's available. And we don't like doing that because, you know, having someone in your home is unsettling at first and awkward. And often people we come in their homes and they feel as though they have to host. Right. Right. We're just gracious people and we don't want that. So, you know, the sooner we can start services, even if it's once a week, just to develop a relationship. Exactly.

SPEAKER_00 13:04

Yeah.

SPEAKER_02 13:04

Then we can respond much quicker.

SPEAKER_00 13:06

Yeah. I we've talked about that even in our Nina support group and things, just people who have maybe needed a little bit more gradual care. It's nice to get them in the home because then they kind of almost become part of the family. Yes. Um, you know, and that there's familiarity, there's um, you also have to just like with a medical provider or anything else, you have to see if your personalities fit and um, and and it has to feel comfortable. And then it's easier when you do need more care to add it in because there's already that trust that's built.

SPEAKER_02 13:40

We actually have a perfect scenario just like that. This family member gets an A plus, in my opinion. She was diagnosed, started her research, very, very active woman. And we introduced her to a personal assistant, truly. Um, that personal assistant was helping her twice a week with her therapy, with her new diagnosis and her therapy. And now what that employee, who we really refer to as a personal assistant because she doesn't provide care per se, she comes once a week and she helps our client prepare for her friends who are coming over for lunch. Right. You know, really helps her do the things that take her a little bit longer. So then she can spend all her energy on what she really enjoys doing. And now we have a relationship with them.

SPEAKER_00 14:36

She can give her time to those friends. Yeah. It's not wasted on the preparation for it. And we all know what that's like.

SPEAKER_02 14:43

Right. That's the truth. It's exhausting to have a party, right? But wonderful.

SPEAKER_00 14:48

You know, and it still keeps her as a hostess, which is probably something that she's just enjoyed for so long. It's just a piece of her and doesn't have to give that piece up. Yeah, that's amazing.

SPEAKER_02 14:57

And like you said, they are great friends now. We've got that extra layer. It's just an extra layer of support. It doesn't take away from the family, it doesn't take away from the adult children, it's just another layer. Right.

SPEAKER_00 15:11

So, you know, part of that conversation sounds like you you're sitting down with families, right? Um, after, so say there's a hospitalization and you know, you're you're working with a family and you're coming in and doing home care and things. What's part of that conversation? How does that go? What you know when the best kind of settles from an emergency situation? What's that conversation like?

SPEAKER_02 15:33

Right. So we go back and say, how are things going? And sometimes it's an adjustment of the right caregivers. Often it's an adjustment of the schedule. Perhaps we start taking some days off the schedule because we're seeing this person is stabilizing. And then we really do want to acknowledge some of the reasons you're feeling better is because you have this extra support.

SPEAKER_03 15:59

Right.

SPEAKER_02 16:00

Maybe it's that um person who comes in and coaches you on your regular exercise because we all kind of need a little coaching, um, and it keeps you honest with your your uh mobility. Maybe you haven't had a fall because that person is always nearby when you're showering. Or they're cleaning out the refrigerator instead of having your daughter come and clean out the refrigerator. So now your daughter gets to spend more quality time with you. So keeping us, we we really look at that care and supervision level. We base it on historical what we see with others, and how can we continue to reduce your risks?

SPEAKER_00 16:42

So you're really kind of coming up with a long-term plan. Yes. With it. Yes. Yes. Amazing. And so, like, what does that look like as far as kind of coming up with a long-term plan? What's you know, what's practical for that, and how's that, why is that conversation so important to have?

SPEAKER_02 16:59

It's so important because I think, again, we don't always share our personal finances with our family members or the people who advocate for us. But if you have a chronic condition, the reality is you will likely need care, or you may need to move, or you may need to adapt your home. There are financial implications to that. And so we open up that conversation. Have you thought about what long-term looks like to you? Have you thought, I want to stay in my home and die in my own bed? Or have you thought to yourself, I'm ready to leave this home when A, B, or C happens? Right. You know, that may be in your head, but has it been spelled out out loud and to your family? Right. And once we have that conversation with them, then we can talk to them about here's what we see in terms of cost. And they can look at their assets. And so often people look at their assets and what they have in their savings accounts, or if they have a long-term care insurance plan, but there are other assets. There's life insurance policies, there's a home. Many of us, that's our greatest asset. And you can, if your determination is to stay at home, you can utilize those resources to be able to do that and afford that.

SPEAKER_00 18:31

Right.

SPEAKER_02 18:32

So it, those are such important conversations. And God forbid, you know, the person with Parkinson's has a condition where they're no longer able to speak for themselves. If you've had that conversation with your family now, they can speak for you. Right. It's so important.

SPEAKER_00 18:48

And it's so important to keep that conversation open because it can change over time too, like what you thought would happen.

SPEAKER_01 18:55

True.

SPEAKER_00 18:55

Um, you know, maybe you were dead set on always staying in your home. And I think most of us want to do that, right? I mean, most of us want to stay in our homes as long as we can. But um, there might come a time, depending on the health of the spouse or the individual, and the where health concern comes up, and that, you know, all that maintenance just does get harder. And then you're thinking of condo or apartment or assisted living and things like that, where that just changes. And so those financial considerations change too. So just keeping again that open door policy about that conversation is so important.

SPEAKER_02 19:29

Right. You know, and that brings up such an important topic because everything that a person needs can actually be brought into their home. The medical, the adaptive, right, all of the support can actually be brought into the home. And because I used to open and license group homes, I have an understanding of what that is, and I can compare that to what you get at home. Because it really does relate to care and supervision. That's how we address it. And we actually created at Synergy, we created a program we call assisted living in your own home. Because what I do is I compare apples to apples. An assisted living offers approximately 28 hours a week of support, which is a daily visit, you know, a couple hours, seven days a week. And they also have staff nearby, not in your home, but nearby if there's an emergency. So you pull a cord, you get help. We've created that model. And if your need is daily visits, a couple hours a day, daily visits with an emergency pendant or family nearby in an emergency, can actually be less expensive than moving.

SPEAKER_01 20:45

Sure.

SPEAKER_02 20:46

So it's really about understanding what you need and finding those resources to bring into the home. Moving is not inevitable. And I say that with the greatest amount of respect for every single level of care because I used to support those. I used to open and license those homes. So it's truly just about knowing you have the choice.

SPEAKER_00 21:11

Right, right. Yeah. And determining that comfort level of both the individual and and family, I guess, too. Because that's obviously that consideration is, you know, if even if you have that um person at the end of the um of the call, like what are, you know, how what that system look like, and just knowing it and learning it and and having that understanding to be able to make the choice that you want to make. So that's fantastic. I love that you're giving people more choices, you know what I mean, and and better options and things to us. Like I said, most people do want to stay in their homes longer, and it should be that we're working on ways to do that, of course. That's definitely something that I'm trying to do in even my podcast, is like it's just giving them, empowering them so that they can maintain the lifestyle that they currently have. So I absolutely love that. What are some of the long-term planning topics that families often avoid, but they shouldn't?

SPEAKER_02 22:09

Well, it's definitely finances. Yeah. That worry about finance. Um, I would say also personal care needs. Okay. That's a very sensitive topic. Sure. And again, as family members and loved ones, we're always going to do what our loved one needs. It was our promise, right? To take care of them. And I always look at care from a family member in two different things, in two different ways. There's can I do it? Right. And should I do it? Right. And whenever you can maintain the original relationship, husband and wife, daughter, father, whenever you can maintain those relationships as much as possible, really the recommendation is to maintain that. Sure. So if someone else can be brought in to provide the personal care piece of it for the most part, that's that's ideal, you know, to remove that.

SPEAKER_00 23:08

And I think it takes going, well, what do you need? What do you feel skilled at? Because, you know, you said, you know, you started in this industry when you were 20. I started when I was 14 in a nursing home as a nursing assistant, you know. And so yeah, I feel like I've had those tools for many years, but most people don't have those like realistically. They don't, they don't, they don't know what comes with advanced care needs and things. And so they might say, Well, I can maintain my home. I can, I can cook, I can clean and all that, but I can't do the care. And other people will say, Well, I would rather have somebody come in and take care of my home. And I know my spouse, I know my individual, my loved one with Parkinson's. I think I could give better care than somebody else. And it's so important to have that conversation of where do you need help? You know, what kind of things can you set aside and and give to somebody else, whether it's a family member or a family member or a paid care provider? Um, what are you willing to relinquish? Where are your strengths and where are your weaknesses? Or where are you just willing to um let somebody else come in and help so that, like you said, you can maintain that relationship. Same with the children. You know, some have different skills and and um are able to help in different ways, but yet you still want to be a daughter or a son or a spouse to that person and not just have those roles completely reversed to where you're just care providing and that's all you have the energy for.

SPEAKER_02 24:37

That makes me think about interdisciplinary teams. And we really look at our clients as a team, it's a team effort. And everybody brings their expertise.

SPEAKER_00 24:50

Right.

SPEAKER_02 24:51

And we did that with my father when he was needing more support. I had a role very clearly, but I have five other siblings and nieces and nephews and children. And so everybody could provide something. My sister once mentioned that to me, and she and she said, Ruth, I can't do what you do. And I said, Honestly, Becky, when I show up, dad's probably annoyed with me. You know, I'm all business and I'm taking care of things. When you're with dad, just sitting with him, you bring dad peace. Everybody's got a role. Grandchildren can come by and share their homework. Right. I mean, how lovely is that? Do a little, you know, mow the lawn, help your parents pay their bills. Everybody can do something. Right.

SPEAKER_00 25:45

Yeah. When you were talking about your father earlier, you mentioned uh you used a phrase of dignity of choice. What does that mean, like in practical terms?

SPEAKER_02 25:57

There are always difficult decisions to make. And again, with that social service model, the patient is the central focus. And I think because we do look at other disciplines, certainly the medical field, that's an area for most of us that's unknown. We don't know what the doctor knows or the medical professionals, so we lean on them. But the truth is ultimately the person has the choice. Absolutely. And so knowing, and my father was a pharmacist, so he had that medical background, but knowing that he can make choices, and there's always more than one. There's always more than one. And if you don't feel like you're getting enough choice, ask for more choices so that you have the dignity of saying, This is the next step I want to take.

SPEAKER_00 26:49

Right. What happens differently when families address changes early as opposed to waiting for a crisis?

SPEAKER_02 27:03

I think there's an acceptance that care is not a task. And it's relinquishing, right? It's relinquishing some of your own control. It's relinquishing where you would have preferred things to go had you not been diagnosed, right? But ultimately, it allows you to be as stable as possible, which is the best place to be when things happen. Right. You know, that that dignity of choice and um stability go hand in hand when you accept help. Exactly. Accept help from your friends, your family, identify what really is involved with the cost associated with that.

SPEAKER_00 27:59

Um, and it puts everybody hard to accept that help, though. Definitely. It's a hard thing for and it's a hard thing for care partners to relinquish or even fill in. And often are oftentimes families don't even know it until like they come for a visit and stay for a while, not just one day, but stay for a while, or they stay with somebody else and they're like, Mom, you you you should have told me, you know, you should have told me you needed more help, you know. So just again that conversation, but they don't want to drag them in, you know, they don't want to drag them in.

SPEAKER_02 28:30

I love that we have um Zoom now. Yes. Because, you know, when you call your loved one, how are you doing? What's the most common response? Good, fine, fine, I'm good, fine. Seeing someone in person or seeing them virtually, you know, hey, take me on a tour of the house, mom. You get to see gate, right? You get to see what's in the fridge. You know, there's there's just so much advantage to that. And we because we are such a more remote world now, we have family members who live away, but there are ways that we can now support one another. I love that.

SPEAKER_00 29:09

Yeah. You mentioned before we were talking about that proactive care. Give can you give me an example of um how proactive care has maybe like kept somebody out of a hospital or out of an emergency situation?

SPEAKER_02 29:24

Sure. Often we ask the individual, when are you most tired? When are you slowest? And some will say it's at the beginning of my day, and some will say it's at the end of my day, right? Um, and we call that the takeoff and the landing, right? Yeah. Getting your day started and ending your day. And so we say, well, if that's what, if that's where you have your your most challenging time, let's reduce your risks and let's have some care and supervision support during that time. And we'll be here to help you get your day started, make some meals perhaps, you know, of course, with Parkinson's, make sure you've taken your meds on time, all of those types of things. And so it could be a couple hours a day, get you everything you need, and then you can complete the rest of your day. And and we've seen even those daily visits, yes, that level of care really, surprisingly, and it's not a lot, stabilizes people for a long time.

SPEAKER_00 30:28

That's fantastic. Plus, like you said, you can catch things earlier if there are changes that are noted and and like you said, hopefully just stabilize that or prevent those falls sooner too. Even just identifying, you know, trip hazards around the house and things like that that might be important. And, you know, they've been there for so long, you stop seeing them. Um, but somebody else being able to see it with a new lens and be able to make some minor adjustments in the home just to make it a little bit safer really helps to prevent a lot for sure.

SPEAKER_02 31:00

And standby assistance, you know, I'm not necessarily going to help you bathe, but I'm gonna be nearby. Right. I'm gonna put my arm out for your elbow, right? I'll wipe down the slippery wet floor, you know. It's it's just that standby that often can be just enough.

SPEAKER_00 31:20

You um you sometimes I know describe care as like a team, right? And give me a little example of what you're talking about with that that you mentioned before about that care team. What does that concept mean? Like Team Joan, Team Bill.

SPEAKER_02 31:37

Yeah, team Joan. You know, I I just love that because we want the family to know that their loved one is important to us. And we're paying attention to what is important to them by making sure they have the right kind of caregiver or personal assistant providing their support. And when we see those subtle changes, and that's what our caregivers are brilliant at, is recognizing those subtle changes. They bring it back to us, and then we call in the team. We let the family know, and we call the daughter and who lives, you know, out of state. Here's what we're seeing. We want to make you aware of it. We have some ideas, we have some funding options, we have some resources, the local doctor, whatever it might be. Here you go. And boy, we get so much back from families when we say that, you know, we're on your team. Right. It just really lets them know this is a journey that we're on with you, and it's important and unique to us.

SPEAKER_00 32:41

I think it's sometimes easier. It would be easier to build that team if somebody else is helping you to kind of do it instead of just having to build it yourself and go, all right, I know I can call on, I could call on this person, but you're always gonna, they're always gonna have that thought of, but they're so busy, right? And um, whereas when you have somebody else going, you need this, we need to, we're all here and we're all gonna support you. And you're able to assess like who are those team um players and who's who's who's willing and and means it, and we're actually going to call them into action as opposed to have that mindset of maybe I shouldn't bother them. Right. So I think sometimes you have to have somebody else call that shot and really kind of put it into motion and things because otherwise we hesitate and we wait and we wait and we wait until it might be too late.

SPEAKER_02 33:35

That's I call that the cross your finger plan. That's a dangerous plan to commit to, D. Cross your finger. Daisy, you made me think about sometimes we talk to family members and it's all the adult children, right? And say, think about a consensus. If you're concerned or you think your family member is resistant, get to a consensus as a family, which is not that everybody is on board 100%. But the truth is we have different relationships with different people in our life. And if each one of your children says in their own way, I think this is a good idea, mom. Yes, mom, I think this is a good idea, then you know these are the people who love me the most. Right. And I respect them for all of their talents. Maybe this is a good idea.

SPEAKER_00 34:27

Right. But it takes a bit to get that all together. And sometimes people just aren't able to kind of get that all together on their own and have that conversation. So I think and like I said, still that conversation in your head of do I want to activate it now? And but it sounds like you help with making that decision on when to activate and put people in motion.

SPEAKER_02 34:49

Yeah. Yeah. I mean, if you're thinking about it, it's probably when you should activate it.

SPEAKER_00 34:55

Yeah, but I think a lot of people still kind of hesitate and wait, right? That's right. And they don't, like I said, they don't want to bother people. They always, I can't tell you how many times I've heard that from my own patients of they have their own life, they're busy with children, they're, you know what I mean? They there's so many reasons in their head that they're justifying that they are that person offered help, but they don't want to take them up on it because they don't want to be a burden.

unknown 35:20

I don't know.

SPEAKER_02 35:20

Can I tell you a quick story about my father's journey? So I was working at Lutheran Social Services 40 plus hours a week, you know, lived probably 15 minutes from my parents, and I knew that because my mother was the full-time caregiver, she probably wasn't cleaning her toilets, you know, probably didn't have time for that. And so I thought, with all my spare time, you know, on the weekends, I would go to my parents' home and I would literally clean my mother's bathrooms because I thought she just doesn't have time for this. And one day, and I get I get emotional thinking about this. One day I was literally on my hands and knees cleaning her toilet, and she was standing behind me, and she was trying to have a conversation with me. And I realized my mother doesn't want me to clean her toilets. My mom wants me to talk to her. She needs her daughter who who has time and presence to talk to her, not racing around her house, you know, trying to get things done. And it was really that moment that I thought, I can hire somebody to clean my mother's toilets. We don't need to do this. And that's the can I, but should I? No, I should not be doing this. That was so powerful for me to really recognize you can let other people help.

SPEAKER_00 36:51

Yeah. And then be there for the peace that she can't get from a paid care provider, which is her daughter. That's right. Especially if you have limited time and you're trying to pick between the two, right?

SPEAKER_02 37:05

That's right. My back was literally to her because I was so busy, right? Running around her house. Yeah.

SPEAKER_00 37:12

That's what I mean, though. Sometimes we're in our own heads on what we think we need. And sometimes it's it's that eureka moment or writing it down or having open conversation even with the whole family as the team, you know, to be able to actually figure out what it is that's actually needed by each each person, you know, that's needs the care. That's right. How does that, you know, when you talked about like the team care and that team building part, how does that mindset change how families actually experience care?

SPEAKER_02 37:47

I I believe it helps in time when you get it right. And and and when I say get it right meaning it might change over time. We may have to adapt the kind of caregiver that's in the home. We may have to um bring in a different caregiver who's a better personality fit. Um, we may have to bring in other services, but when we get it right, what we have witnessed is that family members start clearly seeing their role and they're okay with that. This is my role, this is Synergy Home Care's role, and then we can all collaborate and get together. The person who's going to, of course, be the recipient is the person with the condition. But again, it's that primary, often that you know there's a spouse in place. And it's, you know, families will tell us, I love that you're taking care of my dad, but I want my mom to survive being a caregiver because we all see the statistics. So we really hope that by providing that support and helping this reduce the stress level and physical strain on the primary caregiver, that they live beyond being a caregiver and live well.

SPEAKER_00 39:05

So, what would you say are some of those small, like practical tips that families can implement today that could reduce that stress at home?

SPEAKER_02 39:15

Look around the home for things that the primary caregiver is now doing that they that their care partner used to do, and potentially take the make a running list of that, you know, maybe put it on a Google Sheet in your phone, um, or put it on the refrigerator, put it in your pocket, you know, in your in your purse. Um, and then when someone says, What can I do to help? Pull it out. These are the things I always say, I'm not a big fan of taking the garbage up and down the driveway. I am not great at mowing a lawn. I would add those to my list. Right. And I'm pretty sure my neighbors would be more than happy to mow my lawn for me, to clear the driveway, to take up the garbage, you know, to take my dog for a walk. Or, you know, if you're going to the grocery store, call, right? Call me. You know, it's those simple things when you can start that list or say to your children, I don't want to worry about the bills anymore, you know, these explanation of benefit reports, can I send them to you? It's something very specific and practical because if they ask, what can I do?

SPEAKER_00 40:36

They usually mean it. They do. Yep, absolutely. That's why I try to tell people all the time too. If if they don't want to do it, they just aren't going to ask or they're not going to offer their time. Um, but if they ask, it's because they mean it. And um you just need to negotiate what what that role is. Yeah. Well, we're kind of gonna have to wrap up here. I have one last question for you, Ruth. If you could give one piece of empowering advice to families navigating Parkinson's care right now, what would it be?

SPEAKER_02 41:06

I would say avoid the cross your finger plan. Avoid the cross your finger plan. Be proactive. Get all of the information you can possibly get. Ask your friends, go online, reach out, of course, to the Wisconsin Parkinson's Association. Get all of those resources in your back pocket and then have a conversation with your family. Here are my thoughts in the moment. Here's what I want to do. It's a hard conversation to have, but then you are less likely to be reactive and more likely to be proactive.

SPEAKER_00 41:47

I love it. I love being proactive. Thank you, Ruth. I appreciate you so much. If you or a loved one are in need of care in Southeast Wisconsin, please reach out to Ruth at Synergy Home Care at 414-763-8368 or SynergyHome Care.com. Thank you, Ruth. I appreciate your time and your personal story with your father with Parkinson's and and your lived experience as a family caregiver as well. Thank you. It's my pleasure. The Wisconsin Parkinson Association is a grassroots organization funded by people like you. To support more local programming like this, visit wiparkinson.org.