S8:E2 | Caregiving: Burden or Blessing

Join Tony and Toni as they sit down with Liz Craven. This podcast aims to foster empathy and understanding for caregivers while inspiring meaningful conversations about the broader societal implications of caregiving. By examining its challenges and blessings, we strive to shed light on the transformative power of caregiving and encourage a more compassionate and supportive society for both caregivers and care recipients.

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Transcript

Podcast: Black Family Table Talk

Title: Caregiving & Ageing Loved Ones: Liz Craven's Guide to Supportive Solutions

Shownotes:

Liz Craven is a senior care expert who has firsthand knowledge of the difficulties of caring for an aging loved one. She is deeply committed to assisting families in gaining access to resources and overcoming barriers to providing quality care.

Here's what I cover with Liz Craven in this episode:

1. How Liz Craven experienced and overcame the devastating impact of natural disasters.
2. How Liz Craven shared her thoughts on asking for help and finding support systems.
3. How Liz Craven navigated resources for caregivers of people with Alzhemeir’s and Dementia.

Connect with Liz Craven

Linkedin: https://www.linkedin.com/in/liz-craven

Podcast: https://podcasts.apple.com/us/podcast/sage-aging/id1502780261

Website: https://eldercareguide.com/about-us/

TRANSCRIPT

Forwarded to the topic at hand. 

00:04:48 Toni: Well, welcome to Black Family Table Talk.

00:04:52 Liz: Thank you. I'm so happy to be here.

00:04:54 Tony: Welcome.

00:04:56 Toni: Yes, we are too. I'm happy that you're here because once in a lifetime ago, I worked in your field. I was in senior care. And there is so much lack of information around how do you get resources to care for an aging parent. And it varies from state to state, and people don't know where to go. I've seen it over and over and over again. And I want to talk about what are the common misconceptions and how can we overcome some of our community barriers to accessing care? Because I think a lot of it is forged in the belief that you're not supposed to ask for help, you're supposed to do the caregiving. It's your mom or it's your dad or it's your grandmama or whoever it is, and you're not supposed to get support. So I want to talk about that if you want.

00:06:09 Liz : Absolutely. Wow. So much to unpack there and so many amazing and good things you said. A lot of points we need to cover. The first of which, the most important of which is that help is a good thing. And it is not shameful. It is not weak, it is not you being inefficient or anything of the sort to ask for help. There are resources available in every single community. You have support systems in your neighborhoods and in your churches and in your cities and in your states. There is a reason that that kind of support is in place. Not asking for help is kind of like saying, "Oh, boy, I know nothing about cars, I'm not a mechanic, but let me go try and fix the carburetor in my car," right?

00:07:03 Toni: Yes.

00:07:06 Liz: Will you do that? I will never be able to do that. I can't change my own oil. I go to a place and I let them do that for me. And it's not like we're saying you're not going to be a part of the process because frankly, you will be at the center of the process when you're caring for an aging loved one. But you have to take inventory of your own strengths and your own weaknesses, take inventory of the skills that you possess and the skills that you do not possess and figure out where you stand. And once you figure out what you can handle on your own and maybe what another family member can do, then you say, "All right , here are the gaps, here are the missing pieces, and we need to find help to fill these gaps right here to make sure that our loved one has quality of life." And I should mention that by not asking for help, the only thing that you are achieving is a lesser quality of life for your loved one, but also for yourself, because that stress is overwhelming. You can't do it alone.

00:08:16 Toni: What happened in the course of the years where, well, let me make a statement and then Tony, I know you want to jump in. I think what happened over the course of the years is we are more spread out as families. Families used to be in communities. So you always had a cousin that can look in on your loved one or a relative or neighbor who could help out with the care. So community care was there. And then I think once we spread out and sister moved to the West Coast and your son moved to the south, and now it's left with rotation and all that stuff. So I just wanted to make that point. What's different now versus general?

00:09:08 Liz: Well, and that's a really good point . And a lot of people that I talk to, they say, "Well, I don't live by my mom. I manage her care, but I don't provide the hands-on care, so I'm not a caregiver." Yes, you are. When you are responsible for the well being of another in any way, shape or form , you are a part of the caregiving team. And you're right that we are a lot more spread out. And so, access to your loved one might be more limited than it used to be. And when that's the case, and even when you do have full access to your loved one and you are providing hands-on care, it's still super important and necessary for you to plug into local resources that can help you get the job done better.

00:09:08 Liz: Maybe it's that you have something like Meals on Wheels, delivering meals a few times a week to release that burden and release that stress of having to do that every single day. Perhaps there's a neighbor who you've been friends with for a really long time and they would love to come and sit with your loved one and visit for a little bit and maybe do a puzzle or watch a television show or listen to some music and talk about old times. And those are the kinds of things that you can plug into easily. But I should also mention that there are a lot of community resources that are there in every single community in the United States that you can access. And in order to find those, there is what's called Area Agencies on Aging. Every community in the United States has one. It's very easy to find the one that's in your community you're going to go to. I have the website written down right here, eldercare.acl.gov, when you go to that website, you'll see a place where you can put your zip code in, and that will bring up for you your local Area Agency on Aging. And I tell everybody that that's the best place to begin because they'll know what's around in the community. They'll also be able to connect you with any social services you might be eligible for, any meal programs like Meals on Wheels and maybe respite care. Some communities have respite, which is amazing if you can get a hold of that. Some have in- home care, free of charge or on a sliding scale, different in every single community. So we kind of have to talk in vague terms about what's available, but that's where you start. 

00:11:40 Liz: And then from there, they can also connect you to other people within the community that can help you find things that are kind of hidden treasures because every community has those too. I know in my community, my church has Tuesday Tigers and they're a group of men who build wheelchair ramps. And so those come in by referral, right ? They can't advertise themselves or the list would be so long nobody would ever get a wheelchair ramp, but they do that several days a week just out of love for people. And there are a lot of treasures like that hidden in the communities and you find those in your churches and at the library and within your neighborhood organizations.

00:12:18 Toni: Great stuff .

00:12:19 Tony: It is great stuff. I have two questions.

 00:12:23 Liz: Sure.

00:12:23 Tony: Unrelated.

00:12:25 Liz: Okay.

00:12:26 Tony: One has to do with cost. In your opinion, if you don't have a lot of means and you have limited income, can you get quality care if you are dependent on Medicaid or assistance?

00:12:43 Liz: That is such a good question. Such a good question. And unfortunately, it varies state to state and even within city to city. I know in Florida it's bad. We really don't have a lot to assist those who don't have means. So if you're looking at the need for home care or assisted living, those resources are very, very limited in the state of Florida. That's because we have a very high older population. I want to say our percentage is somewhere around 23% of our state is in that older adult age range. That creates a problem because if we were to try to provide services for everyone, we wouldn't have the funds to do that. And unfortunately, our state is not one that's looking to even try to do that, so we have to find ways around that.

00:13:36 Liz: But having said that, there are states that do provide a lot of opportunities. Sometimes you can be paid as a family caregiver. So let's say you have a family who is maybe a two income family, but one of those incomes is a part time income with assistance from the programs within your state, and that would go through Medicaid most of the time. You might be able to supplement your income and be able to stay home and provide that quality care for your loved one. There are other communities where you can have access to assisted living fully paid for by Medicaid, but it depends state to state what the regulations are and what the programs are that have been adopted by the legislature.

00:14:20 Tony: My second question has to do with how do you have the discussion, the caregiver and your organization? How do you have the discussion with an elderly person who once doesn't want help and believes they can handle everything on their own? What are the telltale signs that it is getting too late? You have to really get some help.

00:14:44 Liz: Yes.

00:14:45 Tony: How do you have that discussion?

00:14:46 Liz: That is one of the hardest discussions you'll ever have. The first hurdle to get over is actually with the caregiver themselves. We don't want to hurt our loved ones feelings. We want to respect their authority because typically, we're talking about a parent, and sometimes we feel like that relationship is shifting where the parent becomes the child and vice versa. That's a really difficult situation, and I've been through it multiple times myself. I'm helping my best friend go through that right now.

00:15:08 Liz: And the best course of action, first of all, is to sit down with the core family. Anyone who might be involved in any kind of decision making siblings, other close relatives, maybe your parents siblings if that's a situation that's present, anyone who might be kind of a part of that caregiving team or decision making team should all sit down together and say, "Hey, here's what I'm seeing. What are you seeing? Here are my concerns. What are your concerns?" And get on the same page. Then we want to approach conversations in a gentle way with our loved one. In my own opinion, this is my personal opinion, it's not a good idea to go and sit mom or dad down and say, "Okay, mom, enough is enough. We got issues that we got to take care of." That's probably not the best approach.

00:16:13 Liz: But how about when you're helping mom in the garden and you're planting some flowers and you know that mom and dad's legal paperwork needs to be brought up to date. You know that you need power of attorneys. You know that it's possible they might need to consider assisted living, all the things. Whatever your situation is, as you're gardening and planting the flowers, you might say, "You know, mom, I talked to my friend Sarah the other day and her mom just moved to assisted living and you wouldn't believe the fun she's having there. Do you know that they had a luau last week?" And you start in that direction. You're kind of just casually mentioning those things.

00:16:58 Liz: Now obviously, if there's an emergent situation present, you basically just have to bite the bullet and say, "Look, I love you, you're my world, I want good things for you, I want quality of life for you and I want you to be safe. And unfortunately, your current situation is not safe. And so let's talk about that and figure out how we can achieve a safe living situation for you so that we both feel at peace." And then you can start the conversation. And a lot of times they're just going to completely resist and there are times when you are going to have to put your foot down. Most families are able to talk through it, but if you have somebody who's just completely stubborn , you might have to make a decision and ruffle a few feathers. But I promise you, if you handle the transition with a team of people, let's say, for example, it's assisted living that's going to happen. Go and visit over a period of a few weeks. Go have a meal there. Go enjoy some of the activities and parties that they do. Go on one of the field trips that they go on to go see a show or go out to dinner and help them to start to acclimate to some of the people that makes a transition like that a whole lot easier.

00:18:11 Liz: If we're talking about bringing someone in to provide in-home care, there are a lot of great ways to do that. You can say, "Hey, my friend Susan wants to come over and play cards with us. Would you be okay with that, mom?" And have Susan come over. That's a paid caregiver, but she doesn't need to know that and start to build that relationship with Susan. Or maybe it's, "Hey, I'm going to have someone come in a couple of days a week to help you with the laundry and the dishes and the cooking to take that off your plate. That way you can remain independent in your home." And if you communicate with the home care agency and whoever's coming in and let them know, don't treat her like you're a caregiver, treat her like a friend. Treat her like someone you enjoy spending time with. Those kinds of things help an awful lot.

00:19:02 Liz: Also, spending time to get to know them because it's all about relationships, isn't it? In almost anything in life. If we create the relationships and that feeling of security and safety for our loved one, then chances are those transitions are going to be better but they take a lot of time. And if you have an emergency situation, unfortunately, you just need to dive right in.

00:19:24 Tony: Toni, I have another question, just shifting gears just a little bit .

00:19:29 Toni: Sure.

00:19:30 Tony: My mother had dementia. She dealt with that before she passed away. Are there any new researches out there on how to handle dementia and Alzheimer's? When you're dealing with a loved one, that can be very strangeful because she didn't argue with me, but she fought with my sisters. I mean, she would yell at them and say all kinds of things and they were the primary caretakers, so they took a lot of the brunt of the yelling and weird.

00:20:03 Liz: And that can be, can it? It can be really intense for someone with dementia. First of all, we need to remember that they are not the person that we grew up with and they're not the person that we've loved for all of those years. And it is not their fault. They have absolutely zero control over what's happening to them. Literally, parts of their brain are dying and that's why you see behaviors change. And somebody who's never said a cuss word in their entire life can let them off in a string at the drop of a hat. And that happens. There's also on their part, an awful lot of frustration and fear.

00:20:45 Liz: My father in law also had Alzheimer's and he was one of the most self aware people that I've ever known. And early on in his Alzheimer's journey, we were sitting in a waiting area at a restaurant, waiting to get seated, and he said, "I always wondered what my mother went through when she had Alzheimer's." And I said, "Did you?" And he said yes. And he said, "But you know what? I think I understand now." And I said, "Really? Well, tell me more about that." And through his eyes, I really experienced a lot of his Alzheimer's journey. And all the way to the end, he would say to me, "Oh, I went away for a little bit, didn't I?" And it became a joke for us. And I would say, "Well, I hope it was a great vacation." And he was self aware enough to handle that. But he was miserable and he was scared. And when he would be a little bit testy, it's because he could tell what was happening to his brain and he knew that he had no control over his life anymore. And so understanding that helps as a caregiver.

00:21:51 Liz: Now, let's get back to the day to day and where to find the resources. Alz.org Alz.org is somewhere every single dementia caregiver needs to go. This is the Alzheimer's Association. They have local chapters in every community. I can't say enough about them. They have ongoing training and learning and support. They have a 24-hour support line that you can call. If you're frustrated and you're in one of those situations where mom or dad is just being so belligerent and you don't know what to do next, there are trained professionals who will get on the phone with you and talk you down and help you cope with that situation. There are local in-person support groups you can take advantage of. Events of all kinds. There are constant educational events both virtual and in person. So I'd highly recommend anybody dealing with that to plug into that. That's super, super important.

00:22:49 Liz: Another resource I'd like to point people to is Teepa Snow. Now she's a renowned expert on Alzheimer's and dementia. She's been an Alzheimer's caregiver, I believe, three or four times personally within her own family. But she has studied it intensely and she offers a lot of training for caregivers and role models. And she does modeling. So let's say that we're talking about mom says she's not hungry and she hasn't touched her soup. She models for you with role play, how to handle that situation. Loved one won't go get in the shower. Well guess what? Let's have a little dance, turn on some music. And she kind of models for you strategies and how to handle yourself in order to get that situation back under control. She teaches what's happening with your loved one and she teaches how to handle that from your own perspective and how to see it from their perspective. Her name is T-E-E-P-A Snow like snow that falls to the ground. And if you look her up online, you'll find a whole lot of YouTube videos and lots of video training. So I'd highly recommend plugging in there.

00:24:07 Liz: For someone who's dealing with dementia, I also highly encourage plugging into the support system of some kind, whether it's a virtual support group or an in person support group. You can sometimes find them at churches, at local home care agency offices, sometimes at assisted living communities. They are always open to everyone. So I'd encourage you to reach out there and befriend some people because sometimes you just need a shoulder to cry on and somebody who will understand what you're going through and that's where you're going to find that.

00:24:39 Toni: That's awesome. Wow, that is so good .

00:24:45 Liz: So good. Yay!

00:24:50 Toni: I worked in the industry for about four years and I had a senior care franchise and it grew and I had ended up with 43 employees but my heart wasn't there and I ended up leaving. But I want to just say that the trend back then, and that was about twelve years ago, was aging in place.

00:25:13 Liz: Yes.

00:25:13 Toni: And that is still the goal for everybody. And I think when people think about help, they think of in terms of at least my experience was they thought in terms of extremes. Like if I call somebody, they're going to come, they're going to take my loved one out away and they're going to put them in a nursing home. And all the rumors and the bad reputation that nursing homes have that come it is scary. It's scary for a caregiver. So what I want to do is I want people to know that aging in place is always the primary goal and that what professionals can help you do is figure out strategies so that your loved one can age in place. And that's really what it's all about. But tell us Liz, what your company is and what you do, how you help people and how to get in touch with you.

00:26:14 Liz: Okay, well, first let me say you're right. Aging in place. I believe the last statistic I saw, AARP does a great job of collecting data and always putting that out there for us. 90% of older adults say they want to age in place. And to your point, the communities that people would go to when they were aging of yesteryear are not what is there today. There are a lot of really awesome and wonderful places if you choose or if the situation warrants for you to go live someplace else other than your home.

00:20:48 Liz: So there are a lot of different options out there. Home is always best, but there are cases where there's nobody present to help someone or they just are not able to live on their own without help that an assisted living community can be a really good thing. A lot of them are very resort-like and an awful lot of fun to live in. So I just want to encourage people, don't shut your options down before you see them with your own eyes. Take the time to do that. And that's a great segue into what do I do.

00:27:19 Liz: So my husband and I have been publishing a senior resource guide in the central Florida area. We're in Polk County. It's called Sage Aging ElderCare Guide. It is a very comprehensive guide to all things senior care and living options. And the best part about it is that although the directory itself, which is a very small part of the guide that lists all of the things available in Polk County, there's also a ton of education and information in there. So anybody with an aging loved one should go to eldercareguide.com and you are going to find a plethora of information about everything from financial and legal and what does assisted living mean and what can I expect? What is home care and what is home care versus home health care? Because there's a difference. What is hospice and what do I expect with that? And what is nursing home, long term care? And what's this thing they call SNF? Sniff? Does that mean smell? No. Skilled nursing facilities.

00:28:19 Liz: So there are lots of acronyms that are used and lots of things that people are expected to know that you just don't know and you just don't know what you don't know. And so this is a great place to start to go and plug in there. We've got a blog. We're always putting new information up there. We also have a podcast, the Sage Aging Podcast, and we do biweekly episodes there. And our guests come from all over the country. So no matter where you live, it's a great resource. I hope you'll plug in. And if you have questions, even if you don't live in the central Florida area, feel free to reach out to us. I would be happy to help dig and find the resources in your own area with you.

00:28:58 Toni: You are gem.

00:29:00 Liz: Thank you. I'm happy to do it. It's my heart. My paycheck is to help people.

00:29:09 Tony: Proactive people. How do they plan for something and what stages do you recommend ? Because you have all kinds of living situations out there. You can age in place in a mansion and one bedroom, a three bedroom townhouse, a condo. What is the ideal or what will you recommend someone who doesn't have any issues with finances or anything like that? They have long term care, they have insurance, they have the means. How do you phase into a comfortable lifestyle for someone who wants to be proactive and not wait for things to get too late.

00:29:52 Liz: Boy, that is just the smartest thing you can do. And frankly, I believe those discussions start when you're very young. I have two grown daughters who are 28 and 30 who've already had those discussions for themselves. You want to know what you want your future to look like, and for them, it was about planning for that future and being able to put those things in place. For someone who does have that in place but hasn't had that discussion, first of all, you're going to want to sit down with your significant other, if there is one there and make sure you're on the same page because a lot of times you'll find out this person has one idea and this person's idea is completely different. So we got to find ourselves on a common ground there. And then you have that discussion with your kids and say, "Hey," kids, or loved ones or whoever it is, "This is what we want for our life and this is how we've provided for it." And some of the questions to ask are do I want to age in place? Do I want to stay in my home? Maybe after my kids are grown, do I want to go to a senior living community, an independent living community, 55 plus type environment where there are tons of activities and lots of other people my age to hang out and play with? And in Florida, that's a big thing and they have so much fun. Some really cool things happen in those areas and people make really great lifelong friends.

00:31:15 Liz: And so, is that what you want your life to look like? When you get to that point that you need assistance, do you want to live close to your children? Do you want to move? Do you want to downsize? Do you want to bring care into the home? Or do you see yourself living in an assisted living community? A lot of people choose to live in a CCRC, which is a Continuing Care Community. So it basically goes from independent to assisted to nursing care, all the way through the end of life. And some people think that that's the route that they want to go.

00:31:48 Liz:  It is such an individual decision. The best way to prepare if all of the finances and everything else are in place is to have the discussion and communication is absolutely key and also making sure that all legal documents are prepared well in advance. Frankly, if you're 18 years old, you should have certain legal documents in place because parental authority goes away at 18. So if something happens to you, we don't always have the ability to make decisions for you unless you've designated a parent proxy. So I think that every individual should have an estate plan, even if it's just minimal documents in place from the time they're 18 up. And that should be regularly reviewed. Once you reach the age of, say, 50 ish, I would say consult with an elder law attorney to make sure that all of the things that you have in place are appropriate for your age and that you're cared for and all of your T's are crossed and I's dotted before you get to an emergent situation and so that we know who's going to make decisions and what you want those decisions to be, all those things should be in place.

00:33:00 Toni: I think that's the first step, really, what you just said, as long as you're cognizant and you're in a place where you can start planning for it. What would be an average cost for a consultation with an elder care attorney ?

00:33:14 Liz: It's going to depend on your community. Usually, I'd say maybe a couple of $1,000, depending on what you're going to have them do. That would include your documents and such. But some elder law attorneys will do a free consultation just to meet with them and see what your situation is and what they might suggest you do, and then add services from there. But if nothing else, if you're still employed and your company has legal shield or there are a lot of insurance programs that companies will buy into for their employees, most of them will offer a retirement document package. And so you can get your power of attorney and you can get your will and you can get all of those things in place.

00:34:01 Liz: So  I would say at the very least, seeing a state attorney who can get those documents in place. And as you creep up there in age, contact an elder law attorney. Now, an elder law attorney can help anybody you don't have to be older in order to have them on your team. And some like to stay with the same person for long periods of time. That would be something that I would consider. And here's the thing with my father in law, we did use an elder law attorney, and they were phenomenal, but they were able to help us structure his assets to make sure that he would be cared for through his whole life so that we wouldn't spend through all of the assets right now. And when you're with Alzheimer's, you don't know you could live a long time with Alzheimer's disease. And so they can do some long term care planning with assets that are in place and protect assets. That's especially important for a married couple.

00:34:59 Liz: If you have one person who is ill and going through a lot of the finances, that leaves not a whole lot for the spouse or maybe nothing. We want to prevent that from happening and the best way to do that is to consult with an elder law attorney and let them walk you through the process of protecting assets and making sure both are provided for.

00:35:19 Toni: Wow. A lot of great information, Liz. A lot of great information.

00:35:25 Liz: I am so happy to help.

00:35:27 Toni: That's Black Family Table Talk.

00:35:29 Tony: That's what's up. That concludes this week's talk. We hope you found some tools to add to your strong Black Family toolbox, and be sure to sign up for a free subscription at blackfamilytabletalk.com for special discounts and product offers reserved exclusively for you.

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