Raise Your Voice: Advocating for Your Loved One

Michael Hughes 00:07
Hi everybody and welcome to Ask a NaviGuide part of the Abundance Aging podcast series from United Church Homes. I’m Mike, your host, and on this show we tackle subjects in aging and family caregiving that can be stressful to work through. And we do this with tips and advice from United Church Homes’ NaviGuide team. Collectively, our navigators have decades and decades of experience helping families with stress work through stressful issues in aging. And we hope that what we share on this show may help you. You may be dealing with the issue that we’re discussing for the first time. And generally we want to help everyone everywhere age with abundance. So we’re lucky to have our navigator, Barbara with us today. We’ve been talking about family dynamics, family caregiving, how families support the needs of loved ones. We’re going to focus a little bit today on being an advocate for your loved one, supporting the physical needs of your loved one. So hi, Barbara.

Barbara Rose 01:01
Hi, Michael. I’m glad to be here.

Michael Hughes 01:05
So real quick, can you just explain your NaviGuide with United Church homes? For how long? And what do you do?

Barbara Rose 01:11
Well, I’ve been a NaviGuide coordinator for nine years, I have two facilities in Ohio, I oversee about 80 to 85 residents. On a daily basis, I also am involved in the community and try to help people of the community. I also find my work challenging, rewarding. And I love it.

Michael Hughes 01:41
That’s great. And it should be said that, you know, this NaviGuide program really was born in the United Church homes, communities. And now we’re even serving people in their own homes as just a service on its own. So you don’t need to be part of the United Church Homes community to benefit from the Navigator program. And man, I don’t think there’s a normal day for you. Right, you know, coordinating hospital discharge, making a doctor’s appointment, being an advocate, you know, on our last show that you were telling a repo company that it was illegal for them to garnish Social Security wages, I mean, there’s just a wealth of information.

Barbara Rose 02:18
Well, I don’t know everything, like I tell my residents that I don’t know what but I’ll find somebody that does. And that that is we’re kind of, we’re kind of like the hookup people. Oh, we just kind of hooked you up to something so that it works.

Michael Hughes 02:41
That’s awesome. I love that. I love that. So we’ve talked in previous episodes about recognizing that maybe somebody needs more help. We’ve talked about, you know, how do you engage your families on this? How do you protect yourself as a family caregiver, but I want to just talk about, you know, let’s talk about somebody that may be needing help, because they’re, they have physical limitations. They’re still their same wonderful self in their heads, but now they’re dealing with stuff that they want to do but aren’t able to do as well as before? How do you, I don’t know, how do you go about really sizing up what they need, and, you know, what they might be able to do for themselves or what they need help with?

Barbara Rose 03:22
Well, spending time and listening and, and just kind of asking, Well, is there something that you struggle with now, since they had a mild stroke? What if you send us an example? Are there any you know, are you able to swallow? Okay, do I need to get you a blender, so we can puree your food? Are you able to maneuver in and out of the bath? Do we need to get you a walk in the shower, because you know, the ultimate goal is to stay at home, have a good quality of life and have purpose. Most people do not want to go to a nursing home. So we want to provide everything to keep them at home safe, comfortable, and have a pleasant life. You know,

Michael Hughes 04:21
what I noticed in your your, first of all, I noticed that you weren’t talking about you as the person that you need help and more talking about the situation or the task that needs to be done, you know, so and then what you’re not saying is rushing in and actually offer physical help right away, right. I mean, I just, it’s more of our should you I mean that the first step is somebody needs help. I’m going to physically help you.

Barbara Rose 04:49
Well, you have to evaluate where you’re at. You know, with that, I mean, if you just had a mild stroke, you can easily work through that. And with physical therapy, they usually rebound. Now, if you have a debilitating stroke, that’s a different story, you may need to get care in the home to help with showering, bathing, eating, even, for that matter, matter if there’s, if they’re not able to use one side of their body, or something like that walkers rollators, even a wheelchair, you know, people live at home with a wheelchair, get along just fine. So there’s a lot of adaptive devices that one can get to provide in the home, so they don’t have to go to a facility.

Michael Hughes 05:49
So yeah, so first of all, I think it, I would think I would agree with this, people generally want to do things for themselves before they have others do it for them. And I’m talking about my taxes, I would love to have somebody else do my taxes. But I’m talking about things like, brushing my own teeth, dressing myself, etc.

Barbara Rose 06:11
Absolutely. Everyone wants to do it for themselves. So I know I do. I know my parents did. And that needs to be rewarded. Yes, we’re not going to take that away from you. If we do need to get help here, it’s only two so that you can continue to live independently. And they can help you do that, if you know only to provide help that is needed, because of course they need that purpose and independence. Right.

Michael Hughes 06:45
And a lot of this stuff. I mean, we talked about walking in showers and things like that, but that’s a bathroom remodel. And maybe that’s the case. But you know, there’s other stuff that’s out there to help you. I mean, I’m, I know I’m a big fan. Well, first of all, what I don’t like is I don’t like going into the bathroom and seeing that somebody has installed one of those bars, they’re sort of are screwed into the edge of the tub, and you sort of use that bar to kind of help you I find that those bright I love top benches. You know, you put the tub bench down and you can sort of sit on one end and undress and then swing your legs around. And I think they cost like 100 bucks so that a lot of this sort of stuff doesn’t necessarily need to be really expensive stuff, right?

Barbara Rose 07:27
No, it doesn’t. And a lot of that out. For example, for my father, we got him a hospital bed through the VFW because he was a veteran. And then when he no longer needed it, I just returned it back to the VFW so someone else could use it.

Michael Hughes 07:47
I don’t know, the VFW did that.

Barbara Rose 07:49
Yeah, at that VFW. Have the aim that anytime you have that, I mean to tell you. There are so many resources out there. And it cost us nothing. You know, for that bad. I think Dad had it for three years.

Michael Hughes 08:08
Okay, families of veterans, listen to this. So wow. Oh, yeah. The other thing I heard is that I think through the VA, you actually do get a homecare benefit don’t

Barbara Rose 08:19
get hurt? Oh, absolutely. They supply money. And yeah, they are a wonderful resource. You can you

Michael Hughes 08:30
get? I mean, I’ve heard of maybe there’s these like donation banks for medical equipment, wheelchairs outside of the VA, the local area agencies or area agencies on aging do that. No. I mean, if a resident needed some supportive devices, where would you go?

Barbara Rose 08:49
Well, we have a wonderful United Way. And of course, I know the director knoweth who gives me any privileges because believe me, she follows the guidelines T DAG. And we have a way of doing that. Also calling if the persons affiliated with the church, call the church and say, Hey, does anyone have a wheelchair I can borrow? Does anybody have a role later that I can borrow for a while, especially if someone just needs at the end? You know, they’re going to get better, that they may not need it, you know, and then and if someone’s on Medicaid, if you go to the doctor, a doctor can just write out a prescription for a walker or rollator

Michael Hughes 09:47
but you have to go to the doctor first. So don’t go just if you’re on Medicaid, Medicare check with the doctor. On an earlier podcast I learned that you know you may just want to ping out of pocket for it because the doctor didn’t write a prescription first.

Barbara Rose 10:03
And that’s true. But yeah, but if you go with your low, no pad to the doctor and say, okay, they need this and this. And, you know, the doctor, of course, is going to help you in any way they can. You know,

Michael Hughes 10:19
yeah. Yeah. So. So that’s leads to another subject, which is acting as an advocate, you know, and, I mean, when you’re a family caregiver, you know, you’re dealing with doctors, specialists, insurance companies, all of these sorts of people that have these languages that they speak and hear, are you just trying to sort things out? So what tips come to me? Because I know that you talk with these folks, too. I mean, how would you normally, I know, start to introduce yourself? Or really, what are the kind of good questions to ask when you’re kind of just first in this situation about supporting the needs of your loved one?

Barbara Rose 11:05
Well, as a family person, I would just say, I’m my mother’s caregiver, as another guide, I always say I am the nav a guide coordinator, and I am trying to get these items as durable medical equipment for my client, and what I need to go to the PAs for that, yeah, I’ve never had an issue, getting anything for my residents. And it’s always good just to be polite, and kind. And usually things just happen.

Michael Hughes 11:48
Because I don’t because doctors mean, they’re not. They want your loved one to do well, too, right? I mean, that’s their doctor. So I mean, I got to think you got to, you’re all on the same side.

Barbara Rose 12:01
Absolutely. You’re all on the same page. And once that physician knows, you’re genuine and caring, and they, I’ve never had a problem getting anything and everything, for the loved one, through a doctor or a facility. And if you have connections with your hospital, you can always call them to get an education. As we already said, if you’re feeling a little bit doubtful about something

Michael Hughes 12:38
Yet, I’d encourage listeners. I believe when this comes out, there will be earlier podcasts available. We’ve talked before about, you know, the teach back method, you know, okay, you said this to me, I’m gonna say it back to you. Is this right? Calling? You’re not stupid if you ask what an acronym means, or things like that, because I think it’s really important for people to know that the doctors know that you’re probably the number one person that’s going to help affect the wellness of their patient. So they should spend time with you. And please, if they’re not, that’s an issue. You have to say this isn’t good enough. But another thing I just thought about is that as a family caregiver, you know, a lot about what will motivate them, your mom, your dad to actually take their pills, and follow those regimens, and things like that, right?

Barbara Rose 13:35
Yes, a daily routine is good care planning as another good idea. I think routine is so important, especially if someone has a little cognitive issue. Okay, we’re going to do this and then we’re gonna do this next. So it doesn’t cause more confusion. Yeah.

Michael Hughes 14:01
And then there’s things like, you know, cultural preferences, language, religious preferences. I mean, you’ve probably still had to work for that or to tell care providers about you know, dynamics like that. Those need to be shared

Barbara Rose 14:16
Absolutely. There are several things that come to mind like meal planning, if someone is vegan, or vegetarian, or allergic, you know, that always comes to mind, religion. You know, some people, some agents don’t enjoy or have anything to do with Christmas. And so, please, don’t invite my mother to the Christmas party that would offend her due to her religious preference, so that needs to be addressed. Are communities of El BGTQ? needs to be addressed? Absolutely. And how should that situation be? Do you want everyone to know about your preferences? Or do you want to be private? That’s their choice.

Michael Hughes 15:23
And I guess I guess those choices sort of extend into other things as well, you know, it. I mean, I’m not sure how often with my own parents, I’ve sat down and said, you know, what, what do you want to do as you even if you have physical limitations, you know, what do you want to do? What do you want to be able to do, you know, what’s important to you? You know, if you’re going into the hospital, what do they really need to know about, you know, and, you know, because hospitals have to stick with that, you know, especially when it comes down to religious or cultural traditions, preferences and things, that they’re held accountable for that as far as my understanding goes?

Barbara Rose 16:03
Well, we always did that when I worked in the nursing facility. That was kind of my role as life enrichment coordinator, and that kind of gave me a basis for being a navigate coordinator now. It was that I learned all of those things. What’s your religious preference? Would some people not like different types of music? You know, that was a big one in the nursing home. You know, I only like gospel music. I only like country western music and, you know, things like that, because music is the last thing you forget.

Michael Hughes 16:52
Right? Yes. And your musical memory, even if you have later stages of Alzheimer’s or dementia? That’s right. Many people will engage. Yeah. So that’s not what I was musically. They don’t like,

Barbara Rose 17:06
right. So that’s an important thing to know. I mean, it seems it just seems kind of indifferent. You know. But when you have cognition problems, music is a very important aspect of your life. It brings joy.

Michael Hughes 17:25
Yeah, and just, we’ll close out after this. But, you know, I’m thinking now about end of life planning. And then thinking about you being an advocate, because asking your parents about this, is I always default to parents, it could be your, you know, another loved one in your life. But I guess my idea of what my loved ones would want at the end of life is probably different from what they want, you know, so So, did you find that? Do you find that, you know, the kids are on a different page than the parents are?

Barbara Rose 17:59
Absolutely. I use my sister for an example here, Michael. She works for funeral homes. And so I mean, maybe our family’s a little bit more open to talking about it than most stars, because she brings home all of these wonderful Funeral Home stories, but she wants to be cremated. Okay. That was her wish. And her son, this executor is like, Oh, no way, Mom, no way. Am I going to have you cremated? And so she just said, Well, okay, I don’t care. Just do what you want. But it goes both ways. You know, it needs to be talked about, it’s a subject that needs to be talked about. And once you open the door, it’s not that bad. It’s really not that bad. And I found that you even get closer together, talking about these difficult things to talk about. Because you’re just opening up your heart a little bit more to your loved ones of your last wishes. Yeah, you know,

Michael Hughes 19:19
I think that’s a great, yeah, that’s a great point. That it really is a great point and a shout out to the need to take those things and put them into an Advanced Directive. We talked about that on an earlier show. So just for listeners, Advanced Directive, your wishes, if you’re in the hospital, if you can no longer advocate for yourself, who will advocate for you? How far will they go in the agreement, what they can agree to and also your end of life preferences. I mean, write them down, get them into an Advanced Directive and have that available if you’re ever hospitalized. So, Farber, anything else on this subject before we close

Barbara Rose 20:00
Well, I would just like to say one more thing is just an easy way to open the door to talk about end of life issues is this while we can take care of this without burdening your children,

Michael Hughes 20:15
Oh, so the NaviGuides could have that conversation. And you

Barbara Rose 20:19
can complete your wishes and it’s all taken care of. And so then when you pass, everything’s taken care of. And so your children are just able to grieve. They don’t have to worry about getting this done and scurry and to get this done. I mean, you can even pick out what clothes you want to wear.

Michael Hughes 20:43
I didn’t even know you guys did this. All right, that’s great. Well, look, Barbara, thank you very much for another great session on the topic of family dynamics, caregiving. Please listen to our other episodes on the topic. And really, for you the listener, thank you for taking the time to listen to this. This is asked of him to have a guide part of the abundant agent podcast series brought to you by United Church homes. If you like this week’s show, like scared, like, share, subscribe. I’m gonna say that in my sleep. But we do have a YouTube channel United Church Homes is how you find us there. Also, you can find all of our episodes on abundantagingpodcast.com where you can leave us comments. What did you think about this? Are there other things we should be covering? Do you have tips? Do you have stories? We’d love to hear from you. So please do that. For more information about the United Church Homes NaviGuide programs now available to support people who wish to age abundantly in their own homes, please visit us UCHNaviGuide.org. For more information about United Church homes, you can visit us at United Church homes.org. Hopefully if you’re listening this in July of 2023 or beyond our resource site for caregivers will be up abundant aging.or A lot of great content there. But again, thank you for listening and we will see you next time.