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What Families Need to Know Before a Long-Term Care Crisis · Groove with Portia

• 0:07
  Speaker 1: Welcome to Guru Portia, the podcast that uncovers the hidden
• 0:09
  Speaker 1: treasures within grief. I'm your host, Portia, the producer, and
• 0:13
  Speaker 1: I'm inviting you to join me on a transformative journey
• 0:16
  Speaker 1: where we will exchange laughter. Of course, the best medicine
• 0:18
  Speaker 1: of them all. Reflect on cherished memories. Remember that time
• 0:22
  Speaker 1: that the little boy grabbed my hand instead of his
• 0:24
  Speaker 1: mother's at the amusement park?
• 0:25
  Speaker 2: Yikes.
• 0:25
  Speaker 1: And of course, discover gratitude while navigating one of life's
• 0:30
  Speaker 1: hardest challenges, loss. So get ready to grew with me, Portia,
• 0:34
  Speaker 1: the producer. Let's dive in. Why hello everyone and welcome
• 0:46
  Speaker 1: back to grew with Portia I'm your host Portia Booker
• 0:49
  Speaker 1: and as always don't forget to like share and subscribe
• 0:52
  Speaker 1: to keep it with all things grew with Portia It's
• 0:54
  Speaker 1: been a little while since I've done a live, but
• 0:56
  Speaker 1: that's all good One of the things I want to
• 0:58
  Speaker 1: talk about today is part of my mom's transition journey
• 1:01
  Speaker 1: one of the things that some of you may or
• 1:03
  Speaker 1: may not know is that we Did not choose to
• 1:06
  Speaker 1: put my mom into a nursing home or a skilled
• 1:09
  Speaker 1: nursing facility or anything as she progressed in her health
• 1:13
  Speaker 1: and And the reason being is because my mom really
• 1:16
  Speaker 1: touched on how she wasn't a fan of nursing homes
• 1:19
  Speaker 1: or anything of that such. She wanted to be at home. Now,
• 1:22
  Speaker 1: one of the things that I did was I actually
• 1:25
  Speaker 1: quit my job. Yes, I quit my job to take
• 1:28
  Speaker 1: care of my mom at home. And I know everybody's
• 1:30
  Speaker 1: situation is a little different. So you have to go
• 1:32
  Speaker 1: with what works for you. But the beautiful part in
• 1:35
  Speaker 1: that of me being able to be at home with
• 1:37
  Speaker 1: my mom was being able to see her off into
• 1:40
  Speaker 1: our next destination a year later. So for all of
• 1:43
  Speaker 1: you today, each and every one of us is going
• 1:46
  Speaker 1: to reach that milestone of aging. And what is our
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  Speaker 1: plan and course of action for who's going to care
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  Speaker 1: for us? Let that sink in. So today, I'm joined
• 1:59
  Speaker 1: by a panel of individuals from different states, some here
• 2:02
  Speaker 1: also in Cleveland, to focus on ROAR, which stands for Respect, Oversight, Advocacy,
• 2:08
  Speaker 1: Reform for Long-Term Care. So without further delay, let me
• 2:13
  Speaker 1: bring on my guest today. We have Ms. Lindsay Friedman
• 2:16
  Speaker 1: and also Nicole Lennon and Jacqueline Ryan from Arkansas. So welcome, everybody,
• 2:23
  Speaker 1: to Guru and Portia. How are you today?
• 2:26
  Speaker 3: No, great. Thank you so much for having us.
• 2:29
  Speaker 1: Excellent. Jackie, can you hear us? Jackie, are you able
• 2:33
  Speaker 1: to hear us?
• 2:34
  Speaker 4: Okay.
• 2:35
  Speaker 1: I'd say leave and come back, and we'll keep going
• 2:37
  Speaker 1: with the conversation. No worries. So, Nicole and Lindsay, one
• 2:41
  Speaker 1: of the things that I want to touch on today
• 2:44
  Speaker 1: is a lot of people don't realize the importance of
• 2:48
  Speaker 1: long-term care and what that actually means. So, for our
• 2:52
  Speaker 1: audience today, why are we waiting until there's a crisis
• 2:57
  Speaker 1: to really have these conversations, right?
• 3:00
  Speaker 3: So I have a couple of theories on this. I
• 3:02
  Speaker 3: run a company called LT Care Now where we help
• 3:04
  Speaker 3: families plan for long-term care because we are seeing this
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  Speaker 3: in the industry that people are waiting for this moment
• 3:11
  Speaker 3: of crisis. Mom had a fall. You get a call
• 3:13
  Speaker 3: from a hospital. Mom can't go home. What does that
• 3:16
  Speaker 3: look like? And these are the moments where people are
• 3:18
  Speaker 3: realizing that long-term care is not healthcare. And I think
• 3:23
  Speaker 3: that is the big difference that people are really unaware
• 3:26
  Speaker 3: of is that long-term care is not covered by insurance.
• 3:30
  Speaker 3: It isn't most likely an out-of-pocket expense or like Portia,
• 3:33
  Speaker 3: like you, or it's falling on the daughter who in
• 3:37
  Speaker 3: some cases, if you can take that time to be
• 3:40
  Speaker 3: off and do that full time, most people don't have
• 3:43
  Speaker 3: that opportunity. And so we get hit with it in
• 3:46
  Speaker 3: a crisis. And I have a couple theories of why
• 3:50
  Speaker 3: I think this is happening. One longevity is, 20 years ago,
• 3:55
  Speaker 3: our loved ones weren't living into their 90s where they
• 3:57
  Speaker 3: needed that kind of care for an extensive period of time.
• 4:01
  Speaker 1: Right.
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  Speaker 3: Cost of care has changed drastically. I equate long term
• 4:06
  Speaker 3: care planning to college funds of today.
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  Speaker 5: Remember, right.
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  Speaker 3: So we all most people who are planning for their
• 4:12
  Speaker 3: kids to go to college, we are like we need
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  Speaker 3: a college fund because we're looking at two hundred thousand dollars,
• 4:17
  Speaker 3: three hundred thousand dollars. That was not the case. 20,
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  Speaker 3: 30 years ago, when you went to a good college,
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  Speaker 3: it was like five grand, right? And parents figured it out.
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  Speaker 3: What is happening now is people don't realize that their
• 4:30
  Speaker 3: long-term care can cost over $ 120, 000 each year, especially for
• 4:38
  Speaker 3: that nursing home that your mom didn't want to go to, right?
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  Speaker 3: So what can we do to now understand that we're
• 4:45
  Speaker 3: going to live longer, we're going to need care longer,
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  Speaker 3: and the costs have risen exponentially? And that is what
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  Speaker 3: we're facing. This is this long-term care crisis that we're
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  Speaker 3: all facing. And we are just tiptoeing into it in
• 5:00
  Speaker 3: five years from now when these baby boomers are aging
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  Speaker 3: even faster. Our generation, the ladies sitting here, we're the
• 5:08
  Speaker 3: ones that are going to really wake up. Portia, you
• 5:10
  Speaker 3: already have and went, oh no, what are we going
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  Speaker 3: to do? And I think we're going to see that
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  Speaker 3: change in how long-term care planning occurs.
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  Speaker 2: Wow.
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  Speaker 1: I mean, Nicole, just my the hair on my back
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  Speaker 1: stood through my shirt when you said one hundred and
• 5:27
  Speaker 1: twenty thousand a year for long term care. And Jackie,
• 5:32
  Speaker 1: the question that I asked Nicole and Lindsay was, why
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  Speaker 1: are we waiting until we're in a crisis to have
• 5:39
  Speaker 1: these conversations? And Jackie, you have your own story. So
• 5:44
  Speaker 1: if you want to weigh in on that before we
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  Speaker 1: pivot further.
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  Speaker 5: Well, just real quick, I think, Portia, because nobody wants
• 5:50
  Speaker 5: to deal with it. Nobody wants to deal with the
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  Speaker 5: last quarter of your life and how you're going to
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  Speaker 5: get out of here. We don't get out of here alive, people.
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  Speaker 5: What are you going to do? And my parents thought
• 5:59
  Speaker 5: they had it all figured out, and they did not. Now,
• 6:03
  Speaker 5: when I connected with Susie is because she was about
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  Speaker 5: nursing homes, but I'm about home care, but it's all
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  Speaker 5: under the long-term care umbrella.
• 6:11
  Speaker 4: Right.
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  Speaker 5: Yes, and I even authored a book about five years ago,
• 6:15
  Speaker 5: Caregiver Scaretakers, Exposing Fraud in Senior Care, because my dad,
• 6:20
  Speaker 5: we hired a home care agency.
• 6:21
  Speaker 4: He paid for it, fine, whatever. No, she didn't confide.
• 6:27
  Speaker 5: She let me know and a neighbor about two and
• 6:29
  Speaker 5: a half years into employment of her six-year employment that
• 6:31
  Speaker 5: she'd been in jail for meth. No wonder her teeth
• 6:34
  Speaker 5: were pretty because they were not real.
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  Speaker 4: And so.
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  Speaker 5: She financially exploited my dad for like about $ 100, 000. She
• 6:41
  Speaker 5: bought a house three days before he died. Where'd she
• 6:45
  Speaker 5: get that money? Or if you want to smoke, go
• 6:47
  Speaker 5: ahead and smoke because she smoked. He would buy her
• 6:50
  Speaker 5: cartons of cigarettes, which was not cheap. Then my mother
• 6:53
  Speaker 5: was bedridden with cancer and I hired a different home
• 6:57
  Speaker 5: care agency. And that one sold my mom's narcotics, Oxycontin,
• 7:02
  Speaker 5: Hydrocodone in the first.
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  Speaker 4: Week and was coming in late, showing up late.
• 7:08
  Speaker 5: Sleeping on the couch, and I had her fired and nothing.
• 7:11
  Speaker 5: She did a written confession to the police department, and
• 7:13
  Speaker 5: nothing was ever done about it. So it's full, full, full.
• 7:18
  Speaker 4: Load, yeah.
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  Speaker 2: Jackie, I'm so sorry. That sounds just like my story
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  Speaker 2: in so many ways. I mean, my mother-in-law, who had
• 7:29
  Speaker 2: long-term home, she had a stroke over 30 years ago,
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  Speaker 2: and I've been married to my husband for 16 years.
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  Speaker 2: And we've really watched home care almost take us down financially.
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  Speaker 1: Yes.
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  Speaker 2: Exploiting her, taking her medications.
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  Speaker 5: Yes.
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  Speaker 2: Taking her jewelry where you can't really, you know, say
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  Speaker 2: it was them or it wasn't. I mean, and there's,
• 7:57
  Speaker 2: you know, we had 18 people in the house at
• 8:01
  Speaker 2: one time. And then we had to move her to
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  Speaker 2: long-term care.
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  Speaker 5: Wow.
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  Speaker 4: Cause it wasn't possible, you know?
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  Speaker 2: So, and then I took her out of everything that
• 8:10
  Speaker 2: was familiar to her, put her into a place that
• 8:14
  Speaker 2: was unfamiliar with unfamiliar faces. And I, we have to
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  Speaker 2: hope and pray that those people are going to take
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  Speaker 2: care of her. And all it is, is endless phone
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  Speaker 2: calls and sleepless nights. It's really, really hard. It's really sad.
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  Speaker 2: They don't take her, you know, she doesn't have a leg.
• 8:32
  Speaker 2: She doesn't have the use of one side of her body.
• 8:36
  Speaker 2: And they'll leave her on the port-a-potty or the bedpan
• 8:43
  Speaker 2: for an hour and take her to Melbourne. And, you know,
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  Speaker 2: that's just the little things.
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  Speaker 3: Yeah.
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  Speaker 2: So it's just it's so hard to how do we keep,
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  Speaker 2: you know, the people that gave us life, how do
• 9:01
  Speaker 2: we take care of them? and then take care of
• 9:03
  Speaker 2: our own lives at the same time and trust people.
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  Speaker 4: I just, that's where I'm lost.
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  Speaker 5: Yeah.
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  Speaker 4: Trust it.
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  Speaker 5: And this is the thing because we do with, you know,
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  Speaker 5: I don't know the businesses a little bit of Nicole
• 9:16
  Speaker 5: a little bit, but the business I'm in is real estate.
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  Speaker 4: You hire me.
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  Speaker 5: I have been fingerprinted a background check in two states,
• 9:24
  Speaker 5: Texas and in Arkansas. Actually, I did have a Pennsylvania
• 9:27
  Speaker 5: license too, but fingerprint and background check to sell you
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  Speaker 5: a piece of dirt.
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  Speaker 4: Never been in your house.
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  Speaker 5: And these caregivers in the state of Arkansas are not
• 9:35
  Speaker 5: required to be fingerprinted. And they might be background checked
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  Speaker 5: maybe once in five years. Well, yesterday, you know, I
• 9:43
  Speaker 5: feel entitled to shop around in the house, don't they?
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  Speaker 1: Well, and that's the the the sad part in reality
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  Speaker 1: of what, Nicole, you and Jackie both have experienced.
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  Speaker 4: Right.
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  Speaker 1: You invite these people into your home with them. trust
• 10:00
  Speaker 1: and faith that your loved one is going to be
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  Speaker 1: taken care of they're going to be turned over if
• 10:05
  Speaker 1: they need to be turned over they're going to be
• 10:08
  Speaker 1: cleaned up after they use the bathroom right and and
• 10:11
  Speaker 1: i'm curious lindsey nicole and jackie let's talk about trust
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  Speaker 1: And with people, right? I'm curious for our audience, what
• 10:24
  Speaker 1: should families know about trust and what should they be
• 10:28
  Speaker 1: paying attention to when their loved ones are being placed
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  Speaker 1: under the care of someone else who does not know them? Jackie,
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  Speaker 1: you want to start?
• 10:39
  Speaker 4: Well, I would start.
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  Speaker 5: I mean, in my book, I have questions to ask
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  Speaker 5: the independent caregiver or the independent or the agency, like,
• 10:49
  Speaker 5: have they been background checked?
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  Speaker 4: When were they background checked? Are they insured, bonded? What
• 10:56
  Speaker 4: is their past history?
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  Speaker 5: And I didn't do that with any of the agencies
• 11:01
  Speaker 5: because we were in a crisis. Dad broke his hip.
• 11:03
  Speaker 5: Mom was at home with hospice care. You know, I
• 11:06
  Speaker 5: just go for referral and go. I don't have time
• 11:09
  Speaker 5: to interview three or five agencies. And so we've got
• 11:13
  Speaker 5: to ask these important questions of their qualifications and their
• 11:16
  Speaker 5: experience and not just watching videos and being hired by
• 11:19
  Speaker 5: a home care agency.
• 11:23
  Speaker 3: So I would take that. This goes back to your
• 11:24
  Speaker 3: first question, Portia. You should interview home care companies before
• 11:29
  Speaker 3: you need home care, because when you're in crisis, like
• 11:32
  Speaker 3: Jackie said, you can't interview five or six. And it's
• 11:36
  Speaker 3: really important to note, and I did not know which
• 11:39
  Speaker 3: states exactly, but I know like Michigan doesn't have it,
• 11:41
  Speaker 3: but obviously Arkansas doesn't have it either. There are states
• 11:45
  Speaker 3: in our country that don't have regulations and certifications about
• 11:51
  Speaker 3: home care company, which means like Jane, the meth head
• 11:56
  Speaker 3: who decided she's sober today, can go and start a
• 12:00
  Speaker 3: home care company, tell you she can take care of
• 12:03
  Speaker 3: your loved ones and come into the home in these unregulated,
• 12:07
  Speaker 3: uncertified States. So I would tell anyone listening, figure out
• 12:12
  Speaker 3: if you are in one of those States, because if
• 12:15
  Speaker 3: you are, you need extra due diligence because there are
• 12:20
  Speaker 3: agencies in those unregulated States that have still gone above
• 12:24
  Speaker 3: and beyond. And you can see some of the, like
• 12:27
  Speaker 3: the franchise ones. I think there are some amazing non-franchised
• 12:32
  Speaker 3: home care companies across the country. Again, in regulated states
• 12:36
  Speaker 3: that are doing beautiful jobs. If you are in an
• 12:39
  Speaker 3: unregulated state, I would take that approach of let's look
• 12:42
  Speaker 3: at visiting agents, visiting angels. Let's look at home instead.
• 12:45
  Speaker 4: These companies that.
• 12:46
  Speaker 3: Have structure around them as a first step if you
• 12:50
  Speaker 3: are in an unregulated state. And then the next piece
• 12:53
  Speaker 3: is even if you think your mom has three years out,
• 12:56
  Speaker 3: start those interviews. Start those calls. And say, you know,
• 12:59
  Speaker 3: I don't need you now. This is just a preemptive.
• 13:02
  Speaker 3: I can see where my mom's headed. I'd like to
• 13:04
  Speaker 3: have this conversation. So when that crisis moment hits, you
• 13:07
  Speaker 3: know exactly who you're going to call and you're going
• 13:09
  Speaker 3: to know your decisions why. And you've done it reasonably
• 13:11
  Speaker 3: and rationally and you've asked all the questions and checked
• 13:15
  Speaker 3: all the boxes.
• 13:16
  Speaker 4: Excellent. I like that.
• 13:18
  Speaker 1: Yeah, I mean, being proactive, right? And this goes into
• 13:22
  Speaker 1: kind of, you know, why we're having this conversation and
• 13:25
  Speaker 1: the importance of advocacy, right? Let's think about the word advocate, right?
• 13:30
  Speaker 1: I think we throw it around loosely, like a lot
• 13:33
  Speaker 1: of trending words these days. But I'm curious for the
• 13:36
  Speaker 1: three of you, what does advocacy really look like today
• 13:41
  Speaker 1: without infringing too much on someone's dignity? And also, Being
• 13:49
  Speaker 1: that person who's not trying to, if I want to
• 13:52
  Speaker 1: call it, try to be Superman, but also is somewhat
• 13:56
  Speaker 1: causing more harm than good. Jackie, do you want to
• 13:59
  Speaker 1: touch on that first?
• 14:01
  Speaker 5: Well, I call myself a senior care advocate. I have
• 14:04
  Speaker 5: no initials past my name in those regards, unlike in
• 14:09
  Speaker 5: real estate, that I care about. And some of these
• 14:15
  Speaker 5: people I visit with, I can tell whether somebody's with them.
• 14:19
  Speaker 5: There was a hundred, she'd been on my show, Mary,
• 14:21
  Speaker 5: 102 year old woman. And I went to her house
• 14:25
  Speaker 5: with my friend and.
• 14:26
  Speaker 4: There was mold all over her door inside.
• 14:29
  Speaker 5: And Mary, who's 102 is on oxygen.
• 14:33
  Speaker 1: That's crazy.
• 14:34
  Speaker 4: And so I started cleaning the mold.
• 14:37
  Speaker 5: I've got, I'm going to post it later, but before
• 14:39
  Speaker 5: and after 30 minutes cleaning her door on the inside
• 14:42
  Speaker 5: of her house.
• 14:43
  Speaker 4: How nasty. Oh, okay. So let's, let's talk about that
• 14:46
  Speaker 4: because well, this is a home care agency. Well, they're
• 14:50
  Speaker 4: paid to take care of Mary. Okay. Is it her
• 14:52
  Speaker 4: job to clean the house?
• 14:53
  Speaker 5: Well, I guess we need to be more specific about
• 14:56
  Speaker 5: what a caregiver needs to be doing. Yeah.
• 15:03
  Speaker 4: It's, it's, it's, it's a wild West out here. It
• 15:05
  Speaker 4: really is.
• 15:06
  Speaker 1: Yeah. And I, Lindsay and Nicole, do you want to
• 15:09
  Speaker 1: comment on that? Um, Yeah.
• 15:12
  Speaker 3: I think one, I want to talk briefly about when
• 15:15
  Speaker 3: you're talking about cleaning the door, those are ADLs. When
• 15:19
  Speaker 3: we talk about home care versus home health, home care
• 15:23
  Speaker 3: is doing all the things that allow you to live
• 15:25
  Speaker 3: independently on your own. If your 102-year-old client isn't able
• 15:32
  Speaker 3: to clean a door that has mold that is making
• 15:34
  Speaker 3: her sick, that is part of a home care person's job.
• 15:37
  Speaker 3: We have We have to ensure wellness. We have to
• 15:40
  Speaker 3: ensure longevity. We want to give them the best life
• 15:42
  Speaker 3: they have while they're here. And it's much independence. And
• 15:46
  Speaker 3: I would tell anyone who is looking at senior care advocacy, one,
• 15:52
  Speaker 3: you're advocating on the part of someone you love. So
• 15:55
  Speaker 3: there should be conversations. You are a care partner, not
• 15:58
  Speaker 3: necessarily a caregiver. We all use the term caregiver, but
• 16:01
  Speaker 3: about being that partner and actually having these conversations with
• 16:04
  Speaker 3: the person you're going to advocate for about what are
• 16:06
  Speaker 3: you looking for? What do you want to do this?
• 16:08
  Speaker 3: Have these questions early. So you're set with that person.
• 16:13
  Speaker 3: But also, if you're really having a hard time as
• 16:15
  Speaker 3: a loved one navigating this, there are senior certified senior advisors.
• 16:20
  Speaker 3: There are geriatric care managers. These are people who can
• 16:24
  Speaker 3: help you navigate that as a family member, even if
• 16:28
  Speaker 3: it's just for a short period of time. Having some
• 16:30
  Speaker 3: experts in the room to help either have the conversation
• 16:34
  Speaker 3: with your loved one to make sure you're all on
• 16:36
  Speaker 3: the same page. Or to have it with the home
• 16:38
  Speaker 3: care companies to make sure everything is established in a
• 16:41
  Speaker 3: very neutral and calm way.
• 16:45
  Speaker 1: Yeah. Yeah. I mean, I think even taking it further,
• 16:50
  Speaker 1: why not start shadowing some of these places early? I mean,
• 16:55
  Speaker 1: I would even take it to I'm 34 now. Right.
• 17:00
  Speaker 1: And I'm looking at the rest of my life instead
• 17:04
  Speaker 1: of right. Waiting until I'm God forbid, I'm 80. I'm
• 17:10
  Speaker 1: on a walker. I have oxygen.
• 17:13
  Speaker 3: Right.
• 17:14
  Speaker 1: Why not be more proactive today and and really assess
• 17:19
  Speaker 1: what am I going to need?
• 17:21
  Speaker 4: Right.
• 17:21
  Speaker 1: I mean, Jackie, you're talking about Miss Mary and it
• 17:23
  Speaker 1: breaks my heart because I know you've interviewed her a
• 17:26
  Speaker 1: few times on the show. And she I mean, she
• 17:29
  Speaker 1: has a lot of wisdom to share about life. Right.
• 17:33
  Speaker 1: And we need these people to I had to say,
• 17:36
  Speaker 1: keep us in line. I just did a recording earlier.
• 17:42
  Speaker 1: And we talked about the importance of grandparents and what
• 17:45
  Speaker 1: they instilled in us young. And I said, I'd give
• 17:49
  Speaker 1: anything to have my great grandmother here for a little
• 17:52
  Speaker 1: while longer because of what she showed me about life,
• 17:56
  Speaker 1: what she instilled in me. And I'm curious for the
• 18:00
  Speaker 1: three of you, I brought up about ROAR in the beginning,
• 18:03
  Speaker 1: which stands for Respect, Oversight, Advocacy, Reform for Long-Term Care.
• 18:09
  Speaker 1: And for our audience, I believe this is going to
• 18:11
  Speaker 1: be the first ever ROAR walk happening nationwide. So I'd
• 18:17
  Speaker 1: love for the three of you to touch on that. Lindsay, Nicole,
• 18:22
  Speaker 1: did you guys want to start first?
• 18:25
  Speaker 3: I'll start by just saying that this is the brainchild
• 18:28
  Speaker 3: of Susie Singer-Carter, who, if your listeners don't know, should
• 18:33
  Speaker 3: go and look her up. She did a beautiful documentary.
• 18:36
  Speaker 3: This came out of her story with her mother.
• 18:38
  Speaker 1: Yeah.
• 18:39
  Speaker 3: And No Country for Old People?
• 18:41
  Speaker 5: Yes.
• 18:41
  Speaker 3: Right. It is the most beautiful documentary. I had actually
• 18:45
  Speaker 3: watched it and reached out to her like a little fangirl.
• 18:49
  Speaker 3: And she was as gracious and wonderful and kind.
• 18:53
  Speaker 5: Yes.
• 18:54
  Speaker 3: And she had this amazing idea to kind of start
• 18:58
  Speaker 3: to change that. And I'll let Nicole talk about the
• 19:01
  Speaker 3: walk here, but I just didn't want her to make
• 19:03
  Speaker 3: sure we did not leave Susie out of this because
• 19:06
  Speaker 3: she is so fantastic and deserves a world of credit
• 19:10
  Speaker 3: for what is going on across the country.
• 19:11
  Speaker 2: Yes. No, yes. And Lindsay, Lindsay had asked me, like,
• 19:17
  Speaker 2: you know, I've just always been wanting to do something
• 19:20
  Speaker 2: to help Lindsay while she's been doing this because I've
• 19:23
  Speaker 2: been working with my mother-in-law and we just lost my
• 19:27
  Speaker 2: father and my father-in-law.
• 19:29
  Speaker 3: So it's been a rough time.
• 19:31
  Speaker 2: And so we've been through it, my family and I,
• 19:35
  Speaker 2: and I've just wanted to help in some way I could.
• 19:38
  Speaker 2: And when this opportunity came available, Lindsay said, Hey, listen,
• 19:43
  Speaker 2: I need a little help. Would you like to join
• 19:45
  Speaker 2: me in doing this walk for Ohio for Susie? And
• 19:49
  Speaker 2: then she introduced me to Susie and I was like,
• 19:51
  Speaker 2: Oh my gosh.
• 19:51
  Speaker 4: What can I do?
• 19:52
  Speaker 2: Like, how can I do this? And, um, you know, I,
• 19:55
  Speaker 2: and trying to do the best I can, I just feel, um,
• 20:00
  Speaker 2: that it's just, it's so important because, um, like Susie's story, like,
• 20:05
  Speaker 2: you know, every, all of our stories, like, I mean,
• 20:07
  Speaker 2: it's right here and everybody's going to, we're all going
• 20:10
  Speaker 2: to have it if we haven't.
• 20:12
  Speaker 4: And, um, I just want it to.
• 20:15
  Speaker 2: Maybe build a platform so that people can start really
• 20:18
  Speaker 2: digging into this. And, you know, nobody told me my
• 20:22
  Speaker 2: fifties was going to be taking care of my child
• 20:25
  Speaker 2: while I'm watching my parents die. You know, I didn't,
• 20:28
  Speaker 2: I didn't know that that was what fifties were about. And, um,
• 20:33
  Speaker 2: So I'm learning that now. And during that process, I
• 20:36
  Speaker 2: want to make sure that, you know, my daughter and like,
• 20:38
  Speaker 2: and Lindsay's daughter and our kids' generations can also like
• 20:42
  Speaker 2: be able to take care of us without having to
• 20:45
  Speaker 2: do this. Because it's been a lot of tough choices
• 20:49
  Speaker 2: that you shouldn't have to make for your parents or
• 20:52
  Speaker 2: you don't want, you know. So that's why the walk
• 20:56
  Speaker 2: has been really important to me and why I jumped
• 21:00
  Speaker 2: at the opportunity.
• 21:02
  Speaker 4: Yes.
• 21:05
  Speaker 5: You know, Portia, it's so easy to just close the
• 21:09
  Speaker 5: chapter and say, I'm glad that's done. You know, get
• 21:15
  Speaker 5: on with my life. And that's what the majority of
• 21:17
  Speaker 5: people do. And what we warriors are doing is reliving
• 21:22
  Speaker 5: the heartbreak that we lived from our past experiences, from
• 21:28
  Speaker 5: our experiences, to bring it to the forefront. Because The
• 21:32
  Speaker 5: majority of people just want to close a chapter and.
• 21:34
  Speaker 4: Get on with their life.
• 21:34
  Speaker 5: And it's a lot easier doing that. And I do
• 21:37
  Speaker 5: have the vision and mission statement written out here. And
• 21:41
  Speaker 5: if I may read that on behalf of Susie is
• 21:44
  Speaker 5: the vision statement is Roar envisions a world where long-term
• 21:48
  Speaker 5: care ensures every resident is treated with dignity, compassion, and respect,
• 21:53
  Speaker 5: as well as the highest quality of care. A world
• 21:56
  Speaker 5: where every generation can look forward to the future without fear.
• 22:01
  Speaker 5: Our mission statement is to use the power of storytelling
• 22:05
  Speaker 5: to expose systematic failures in long-term care and transform public
• 22:09
  Speaker 5: awareness into action through film, TV, podcasts, social media, and
• 22:15
  Speaker 5: lived experiences. We amplify the voices of our families, of
• 22:19
  Speaker 5: our residents, and frontline workers to make injustice visible, to
• 22:24
  Speaker 5: inspire advocacy, and drive meaningful reform. Our mission is to
• 22:28
  Speaker 5: awaken the public Galvanize effective oversight and build a compassionate,
• 22:33
  Speaker 5: accountable system where dignity and high-quality care are the standard
• 22:38
  Speaker 5: for all. And her motto is, I am a warrior.
• 22:43
  Speaker 5: We are warriors. We use our voice for those who can't.
• 22:47
  Speaker 5: Respect oversight, advocacy reform. We roar for change.
• 22:52
  Speaker 4: I pledge, we.
• 22:53
  Speaker 5: Pledge your roar to end neglect, ageism, and ableism. Aging
• 22:58
  Speaker 5: with dignity is our future. Our voices together are stronger.
• 23:02
  Speaker 5: Let's roar for justice.
• 23:06
  Speaker 1: Hey, I hear that. I feel like I just went
• 23:08
  Speaker 1: to church today and that's what it is, right? I mean, we,
• 23:12
  Speaker 1: you know, lions roar, right? When you hear a lion roar,
• 23:17
  Speaker 1: you know what it is. It sends a chill up
• 23:18
  Speaker 1: your spine. And why are more of us not doing
• 23:23
  Speaker 1: that same approach with long-term care reform? I'm sure Lindsay
• 23:29
  Speaker 1: and Nicole, you've seen the various stories here in Northeast Ohio, right?
• 23:34
  Speaker 1: about different nursing facilities that have, you know, neglected individuals.
• 23:40
  Speaker 1: There's a woman on my Facebook page right now that
• 23:44
  Speaker 1: is very vocal about her experience inside of a nursing
• 23:49
  Speaker 1: home right now. Hello, Corey Miner-Smith. Thank you for tuning in.
• 23:53
  Speaker 1: I appreciate it. And when I read her post, it's heartbreaking, right?
• 23:59
  Speaker 1: it breaks my heart because she watched me grow up
• 24:01
  Speaker 1: as a little girl and she doesn't have family.
• 24:06
  Speaker 2: Right.
• 24:06
  Speaker 1: And so, you know, what are we doing as a
• 24:09
  Speaker 1: community to ensure that this isn't the same outcome, just
• 24:15
  Speaker 1: like what you experienced, Nicole, what you experienced, Jackie. And
• 24:19
  Speaker 1: so can both of you, so Nicole and Lindsay, I'm
• 24:23
  Speaker 1: going to go back to both of you. Can you
• 24:24
  Speaker 1: share with our audience today that, where the walk will be.
• 24:28
  Speaker 1: And also, um, if they need to sign up how
• 24:31
  Speaker 1: that works and Jackie, then you'll be able to share
• 24:33
  Speaker 1: where it's going to be in Arkansas.
• 24:36
  Speaker 4: Um, I think there's a link, right.
• 24:38
  Speaker 2: And there's a Facebook or, um, so where's the walk
• 24:43
  Speaker 2: going to be at? Let's start with the walk's going
• 24:45
  Speaker 2: to be at the, um, Northeast Ohio, um, sports arena. Okay.
• 24:52
  Speaker 2: So it's in Euclid, Ohio on Sunday, um, With everyone else.
• 24:57
  Speaker 2: And then we're just going to, it's a sports facility inside, outside.
• 25:02
  Speaker 2: We're going to have some music and have some Browns
• 25:05
  Speaker 2: game on. We're going to have a couple of raffles.
• 25:08
  Speaker 2: And then if the weather is good, we can walk outside.
• 25:10
  Speaker 2: If it's not, we can walk inside.
• 25:13
  Speaker 4: So, but yeah.
• 25:15
  Speaker 2: All right.
• 25:16
  Speaker 4: What time is that? 12 o'clock.
• 25:19
  Speaker 2: All right.
• 25:19
  Speaker 1: So 12 o'clock.
• 25:20
  Speaker 5: Yep.
• 25:21
  Speaker 3: And just because Nicole did such an amazing job of
• 25:23
  Speaker 3: setting this up, this is, we, it's a rain or
• 25:26
  Speaker 3: shine because we have an inside option.
• 25:30
  Speaker 1: All right. So the, the Euclid's Euclid sports complex, correcting
• 25:35
  Speaker 1: you could Ohio at 12 o'clock. So I'll, I'll put
• 25:38
  Speaker 1: the link back up where if you want to register
• 25:41
  Speaker 1: for Northeast Ohio's walk, you're more than welcome to Jackie.
• 25:46
  Speaker 1: What about in Arkansas for people who want to attend?
• 25:49
  Speaker 4: Yes, I'm in Northwest Arkansas Fayetteville. My poster, which.
• 25:54
  Speaker 5: Is we're going to be at the Old County Courthouse
• 25:57
  Speaker 5: at 4 South College Avenue in Fayetteville. It's just a
• 26:01
  Speaker 5: two-block walk.
• 26:02
  Speaker 4: My husband's going to be in his lithium battery wheelchair.
• 26:07
  Speaker 4: Walkers and wheelchairs, come on. And we're going to walk just.
• 26:11
  Speaker 5: Two blocks and have line dancing and Some speakers, we've
• 26:16
  Speaker 5: got a house representative to speak, legislator to speak, got
• 26:20
  Speaker 5: a county judge to speak, and a local county JP
• 26:23
  Speaker 5: to speak. I'm trying to find somebody from the police
• 26:25
  Speaker 5: or sheriff's department to speak. And then we'll wrap up
• 26:28
  Speaker 5: with yoga for seniors. So that's what we're going to do.
• 26:31
  Speaker 4: You can go. Yeah.
• 26:33
  Speaker 5: And we're going to have a pigeon, homing pigeon released
• 26:37
  Speaker 5: before the speakers.
• 26:38
  Speaker 4: This gentleman, he's going to release homing pigeons. Yes. And
• 26:40
  Speaker 4: then it'll come back.
• 26:42
  Speaker 5: So, you know, you never know what you're going to
• 26:44
  Speaker 5: get into with something like this. I know it's all
• 26:46
  Speaker 5: of our first time. We've never done anything like this before.
• 26:49
  Speaker 5: But on the website, wherever you are listening, go to ROAR,
• 26:54
  Speaker 5: the number four, LTC.org. Go to get involved and find
• 26:59
  Speaker 5: your state. And because we've got about 30 states, about
• 27:04
  Speaker 5: maybe 36 walks. We've got different walks in different states.
• 27:08
  Speaker 5: We don't have the whole 50 this year, maybe next year. But, yeah,
• 27:12
  Speaker 5: just go. Go participate.
• 27:14
  Speaker 4: Get involved. Donate, whatever, because you're not getting out of
• 27:18
  Speaker 4: here alive. Who's going to take care of you later?
• 27:20
  Speaker 1: Okay, that part. So, Lindsay, Nicole, and Jackie, I want
• 27:26
  Speaker 1: to thank each of you for coming on and sharing
• 27:28
  Speaker 1: with our audience, number one, the importance of being proactive.
• 27:32
  Speaker 1: Number two, that long-term care reform is essential, especially now.
• 27:37
  Speaker 1: Everybody think about that $ 120, 000 price tag that Lindsay brought
• 27:40
  Speaker 1: up in the very beginning. That is a college degree
• 27:48
  Speaker 1: from Case, just so you guys know. So think about that.
• 27:53
  Speaker 1: Before we conclude for today, I want to ask the
• 27:55
  Speaker 1: three of you a final question. We go to the
• 27:59
  Speaker 1: walk on Sunday. We endure ourselves. We make it known.
• 28:03
  Speaker 1: We roar, right? But what happens Monday? What can individuals
• 28:09
  Speaker 1: do to continue the conversation and continue advocating for long
• 28:15
  Speaker 1: term care reform? Jackie, I'll let you start.
• 28:19
  Speaker 5: Oh, excellent question, because I'm getting postcards made right now
• 28:23
  Speaker 5: is on our WhatsApp postcards. The walk is over, but
• 28:27
  Speaker 5: the work has just begun. So to contact your legislators.
• 28:32
  Speaker 4: Find out.
• 28:33
  Speaker 5: What divisions committees your legislators are going to be on.
• 28:37
  Speaker 5: Talk to your legislators and see if they have an interest.
• 28:40
  Speaker 5: There's a legislator in the state of Florida that will
• 28:42
  Speaker 5: not pass the bill for cameras in nursing homes. There's
• 28:45
  Speaker 5: a legislator in the state of Texas that will not
• 28:48
  Speaker 5: pass a bill for people to be signing in to
• 28:52
  Speaker 5: show their ID into living facilities.
• 28:54
  Speaker 4: So it's these senators and congressmen. Contact our congressmen.
• 29:00
  Speaker 5: This needs to be federal laws. We all need to
• 29:03
  Speaker 5: be on the same page, fingerprinting background checks. I mean,
• 29:08
  Speaker 5: just like getting your driver's license. I mean, what is
• 29:10
  Speaker 5: the problem here? Actually, I do touch on FBI wrap back,
• 29:14
  Speaker 5: ongoing real-time background checks.
• 29:16
  Speaker 4: I came across that when I was.
• 29:17
  Speaker 6: Renewing my Texas real estate broker's license six years ago
• 29:20
  Speaker 6: in the state of Texas to sell you a piece
• 29:22
  Speaker 6: of dirt. So FBI wrap back, this ongoing real-time background check.
• 29:27
  Speaker 6: Contact your legislators. Be active with the senior community.
• 29:33
  Speaker 4: And just spread the word spread the love.
• 29:37
  Speaker 1: Excellent. Thank you, Jackie. Appreciate you. Lindsay and Nicole, go
• 29:42
  Speaker 1: right ahead.
• 29:43
  Speaker 3: Yeah, I'm going to just kind of echo what Jackie
• 29:45
  Speaker 3: said on that one respect of like contacting your legislatures.
• 29:48
  Speaker 3: There's a lot of things that can get put in
• 29:50
  Speaker 3: place that are in place in some states that should follow,
• 29:54
  Speaker 3: like the background checks. the minimum ratio between resident and caregiver.
• 30:01
  Speaker 3: There are things that we can do that could just
• 30:03
  Speaker 3: become legislation that we could do that would just ensure
• 30:07
  Speaker 3: better quality care across from that. And that is a
• 30:10
  Speaker 3: big ask. And that is where the awareness comes in
• 30:13
  Speaker 3: because it's going to take a lot of us to
• 30:15
  Speaker 3: go to these officials and say, this has to happen.
• 30:20
  Speaker 3: And while we're doing this, I always feel terrible when
• 30:24
  Speaker 3: I have to come, but it's going to come back
• 30:25
  Speaker 3: onto ourselves until government and until society comes to a
• 30:30
  Speaker 3: place where we are making impact and you can just
• 30:33
  Speaker 3: know your long-term care is going to be covered and
• 30:35
  Speaker 3: taken care of in quality. We have to, as ourselves,
• 30:40
  Speaker 3: say it's not going to be. We are not there yet.
• 30:44
  Speaker 3: So how am I going to take care of myself?
• 30:47
  Speaker 3: And my family, because that's what making a long-term care
• 30:49
  Speaker 3: plan is really doing, is you are making your experience
• 30:53
  Speaker 3: for your family as you age better. And so I
• 30:56
  Speaker 3: would tell everyone, I hope we get to a point
• 30:59
  Speaker 3: where society changes, how we do this changes. But until then,
• 31:05
  Speaker 3: this is your moment to say, I'm going to do
• 31:08
  Speaker 3: this for myself and I'm going to do this for
• 31:09
  Speaker 3: my family, even though it's not fun. And even though
• 31:12
  Speaker 3: I might not want to talk about what it's like
• 31:15
  Speaker 3: to be toileted. I'm going to do this because this
• 31:18
  Speaker 3: is the option that's in place today.
• 31:21
  Speaker 4: I love that. Thank you, Lindsay.
• 31:23
  Speaker 2: And for me, I'm just going to get through Sunday
• 31:27
  Speaker 2: and then hopefully I just keep educating myself through you
• 31:31
  Speaker 2: all Monday, Tuesday, Wednesday, through the next couple of years.
• 31:36
  Speaker 2: And then I can have more to offer when it
• 31:39
  Speaker 2: comes to this. But I'm just jumping on board.
• 31:42
  Speaker 4: Yeah. Proud to be. Just jump in. Right.
• 31:46
  Speaker 1: Jump in, roar. I think that's the main piece, right,
• 31:50
  Speaker 1: is it takes a village.
• 31:52
  Speaker 4: It does.
• 31:53
  Speaker 1: My mother always used to say teamwork makes the dream work.
• 31:56
  Speaker 4: That's right.
• 31:57
  Speaker 1: So how many of us, we're all going to be,
• 32:00
  Speaker 1: I hate to say it, in this sports team at
• 32:03
  Speaker 1: some point. So whether you pick being the quarterback, you
• 32:07
  Speaker 1: brought up watching the Browns on Sunday, I'd say maybe
• 32:10
  Speaker 1: turn the volume down to keep the momentum up at
• 32:13
  Speaker 1: the events on Sunday because we know that they are unpredictable.
• 32:17
  Speaker 1: I think at the end of the day, the biggest
• 32:21
  Speaker 1: thing that each of us can do is be proactive.
• 32:25
  Speaker 1: Really take a minute to sit down and ask ourselves,
• 32:29
  Speaker 1: what do we really want? What do we need to
• 32:33
  Speaker 1: do today to protect our families? Because we can see
• 32:37
  Speaker 1: that things are so uncertain and also going to our legislators, right?
• 32:42
  Speaker 1: Being that voice of change because each and every one
• 32:46
  Speaker 1: of us has it within us to make things work. Well, everybody,
• 32:52
  Speaker 1: that was Lindsay Friedman, Nicole Lennon, and Jacqueline Ryan that
• 32:57
  Speaker 1: you heard from today on Grew Up Portia. Don't forget,
• 33:00
  Speaker 1: if you'd like to be a participant in the Roar Walk,
• 33:04
  Speaker 1: this is the website here, roarforlongtermcare.org. This will also be
• 33:09
  Speaker 1: in the updated show notes if you are tuning in.
• 33:12
  Speaker 1: And just remember, Think about the seat of occupancy that
• 33:15
  Speaker 1: you're going to be in at some point, okay? Well, everybody,
• 33:19
  Speaker 1: that concludes our conversation today. And until next time, everybody,
• 33:22
  Speaker 1: peace and hair grease, everyone.