Love Means Building A Care Plan Before Crisis Hits

The hardest caregiving questions usually show up at night: What happens if I get sick? Who steps in if my child has special needs for life? Who advocates for my parent when I cannot? We go straight into the reality that many midlife families, especially in communities of color, carry quietly: long-term care is love, but love without planning can turn into overwhelm. 

We talk about the sandwich generation pressures of caring for older adults while still supporting children, including adult children with disabilities or ongoing mental health needs. We unpack why stigma and silence keep families isolated, and why that isolation makes care harder than it has to be. Then we shift the frame: planning is leadership. It is advocacy. It is building a system so the people you love are protected even when life throws you a broken ankle, a job change, or burnout. 

You’ll hear a practical care planning starter checklist we use ourselves: identify a future guardian or advocate, start financial planning for long-term care, document medical needs and routines, research community programs and support organizations, and write down your current needs so you can finally have the family or network conversation. We also talk about patience, dementia, changing capacity, and why checking in on your own needs is essential to staying kind and steady. 

If this topic hits close to home, share it with someone carrying the load, subscribe, and leave a review so more caregivers can find real help.

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💃🏽Stacy M. Lewis
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🎩Wayne Dawson
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Transcript

Opening Questions And Purpose

Coach Stacy 0:05

Let's be honest about something many families don't talk about out loud. What happens when the people we love will always need care? For many families, there are parents quietly asking themselves questions like, Who will care for my child when I'm gone? Who will care for my aging parents if something happens to me? What do I plan for long-term support without feeling overwhelmed? And perhaps the hardest question of all is what conversations have I been avoiding? Today, the conversation is about love, leadership, and planning. Because love isn't just emotional, love requires planning.

Coach Wayne 0:59

You found the midlife revolution unleashed, the space to embrace your wisdom, reignite your passions, and move boldly into what's next. I am Coach Wayne, the VIP coach.

Coach Stacy 1:12

And I'm Coach Stacy M. Lewis. We're here with insights, stories, and strategies to fuel your midlife journey. So take a breath, lean in. Your revolution starts now.

Coach Wayne 1:29

Yep, we're here again. Good afternoon, good morning, good night, good wherever you are, whatever time it is. This is Midlife Revolution Unleashed. Your weekly dose of helping men and women of color navigate midlife. Stacy, good afternoon. How are you?

Coach Stacy 1:53

Wayne, I am doing well, and I too want to welcome our listeners and viewers to Midlife Revolution Unleashed. I'm Coach Stacy. I'm a nonprofit executive, a midlife woman's coach, a lover of God and his people, and Wayne's co-host. Wayne, introduce yourself to the people.

Stigma Around Special Needs

Coach Wayne 2:17

Yep, I'm Wayne Dawson, the VIP coach. I help men of color navigate midlife so that their second half can be their best half. Stacey, today we're talking about something really personal that hits home to many folks, and that is long-term care and for the elderly and caring with folks that may have special needs. This really rings yesterday, we last time we talked about a sandwich method, and we talked about it because we were saying that you know at midlife, you have children, whether they're adult children or younger children, that you're feeling still responsible for. And then you have those above you, the generation above you, the elderly or those that are seniors, that you're also feeling responsible for. And you feel a little stretched. We want to get a little bit more into it today and talk about how and what requires to care for the elderly and those with special needs.

Coach Stacy 3:21

Yeah, Wayne, it really is not only a personal, but I believe a timely conversation. We don't talk enough about folks in our generation that have special needs children that, you know, are likely adult children, but they have special needs, so they may need care for their entire life. I think also just because of some personal things I'm experiencing, thinking about, you know, when you're in a partner relationship or even it could be your siblings when, you know, when there's illness in the family that requires extra care giving of adults that may be in your generation. And then, as you referred to earlier, this being the sandwich generation, you could have those parents that you, or those grandparents, or those, you know, aunts, the godmothers, what whatever they may be, that you are also responsible for taking care of. And all of that creates weight that we need to to that we need to carry. And I think really talking about it is one way to help lighten the load a little bit.

Coach Wayne 4:48

Yeah. And unfortunately, oftentimes in communities of color, this business of caring long-term care and caring for folks with special need, including mental health, is not spoken about. In Jamaica, many years ago, when I was in Jamaica, I know that it was not uncommon to find families, may have changed, that had special need kids, for example, that you never met, you never saw on the street. They were always like in the back room when guests came, when folks came, or they would sometimes send them to the country, you know, to be raised. So there was this stigma around that.

Coach Stacy 5:33

Yeah, yeah.

Coach Wayne 5:34

Not a good look.

Coach Stacy 5:36

Yeah, I'm glad that we're seeing less of the stigma now. I too, growing up in New Jersey, had a neighbor and they had a special needs child, and you never saw the child. Could be a beautiful day outside. You never saw them sitting on the steps, nothing. You just you just happened to know that they were there. And I think that I've seen a shift. I know a couple of people that have special needs children, you bringing in the nuance of mental health, right? We also we often think about special needs folks as those maybe that that are born with a disability, diagnosed with a rare disease, that type of thing. But in the age of acknowledging and amplifying the profile of the reality of mental health needs, right, you could be caregiving for a child or a parent that has some mental health needs that require ongoing care.

The Cost Of No Planning

Coach Wayne 6:52

Yeah. There's a bit of a tension, I think, too, Stacey, between the fear of not knowing perhaps how to care and love. You know, you want to demonstrate love. And at the same time, there's this fear, this uncertainty about future planning and how you move. And sometimes selfishly, folks are bottled down and worried about how it impacts their own progress, you know, when you have to take time out to care for somebody else like that.

Coach Stacy 7:27

Yeah, I think one of the things I'm noticing is that often we don't plan. You know, we're we're busy, almost in this heroic mode of caring for those that we love without a plan and or without paying attention to how we're doing. So, you know, we're we're going through the motions, going through the motions and making it all happen, not paying attention to how we're doing, and and maybe not thinking about how more of a planned approach might help us through the season.

Coach Wayne 8:10

And to be player, there are many families of color that are doing really tremendous work, making a lot of sacrifices, committing to part-time work so that they can care. And to your point, if if we're not planning, then it brings on more duress on us. And, you know, without a plan, sometimes we're more likely to fail at giving the proper care and most appropriate care. So planning is very much a part of it, and educating ourselves too, Casey, Stacey.

Family Systems And Guardianship

Coach Stacy 8:47

Absolutely, and recognizing that a plan can help to reduce stress. And I'll say when you alluded to the word that talks about, you know, where there is no plan, the people perish, right? When we're not prepared. And so there really is value in the plan. And I think one of the questions that I posed in our opening is, you know, what is the conversation that I'm avoiding as it relates to how I'm doing and how there may be a need for a plan.

Coach Wayne 9:26

And this is where I think family systems come in. You know, I I keep going back to my trip to Ghana a few months ago, where I was so impressed with the idea that I'm sure they had homes, long-term care homes and facilities for the elderly. Uh but for the most part, culturally, the family took care of the family. So, family systems, I think, is very important when you know we're we're doing this kind of uh supportive work. And even if it's work with someone that we love, it's still work, you know, it takes a toll on us, and we have to have the energy and make time to make this happen.

Coach Stacy 10:21

Yeah, I think one of the interesting things, Wayne, thinking about you know, your experience in Ghana, in this country, in the United States, where both you and I are, um, we don't do societally a good job of training, of educating, of supporting people to take care of their families outside of, you know, the eight weeks, twelve weeks that someone might have for maternity or paternity leave. I think that there really needs to be more conversation about guardianship, right? If you are caring for an adult child or a loved one, and you have some concerns or really are just thinking practically about how things might go, how things ideally could go, and how things might not go according to plan. I think considering a guardianship and really understanding what that could mean to you and your sense of comfort as part of your planning is worth considering.

Coach Wayne 11:45

That's really wise advice, Stacey. Having the support by pulling on resources that may be available to you. And sometimes, again, people just don't know because oftentimes they keep it to themselves and because they're not extending themselves and and and and putting it out there, they don't get the information of what's available. You know, when we talk about family systems, which is important to engage other members of the family, siblings, for example, I know oftentimes, you know, if you're talking about, say, long-term care, for example, you may have the firstborn sometimes just assuming the responsibility of taking care and or the one who makes the most money. But what we must recognize is that it's so important to spread the love and the responsibility, try to get siblings involved, and and in many cases, extended families too can be called.

Coach Stacy 12:53

Yeah, I think it's as I mentioned in the beginning, this idea of love is planning, right? That love is an action word, and planning is an action that we can take as a demonstration of that love. And, you know, some of our listeners are only children, right? And so it falls, it falls on them. They don't have necessarily that that sibling support that others may have. And I think in that case, planning is even more crucial to your mental health and your physical health, really thinking about the financial supports that might be needed. If something happens to me and my adult child with special needs, or my elder parent or elder person is living with me, if something happens to me, what are the housing options that we have to really explore? What's what's gonna happen to this person that is relying on me if something happens to me? And I think that that's one of the conversations that we avoid having in these situations.

Coach Wayne 14:16

Yeah. Again, another home run, Stacey, that uh mentioned, because when we talk about planning long-term care, planning for folks that may be dealing with some sort of a incapacity or a disability, we have to also plan for ourselves, to your point, for continuous care or or legacy care, so to speak. We don't know. There's no certainty about what will happen to us in terms of our health and and ability to care for that person or those persons. And then also our finances. You know, we could wind up having some financial blocks or challenges. And then what happens? If if there's nothing set up for continual and continuous care, what happens if we're out of the game? So it's it has to be more than the one person trap that we deal with when we plan. And I think too, if we start reframing what it means in terms of the responsibility to see more than just that, but also leadership. You know, that kind of care is also an extension of leadership.

Coach Stacy 15:37

Yeah, I I I love that idea because it is employing or engaging our leadership skills, even in this very personal and intimate setting. One thing we would likely do if we were coaching someone, or if we're talking to a good friend that's in this situation, we would inquire what are some of the support networks that you might have access to? What are some of the community resources that could be available? Your your mention of the financial stress is so very real, you know, and thinking about how how the if there's stress now and I'm able to work and I'm able to pay for child care, adult care, the level of care as a caregiver, and something happens to me, and I mean something happens to me could be as I was gonna say simple, it's not painless, but it could be breaking an ankle.

SPEAKER_01 16:57

Yeah, right?

Coach Stacy 16:58

Like something that just takes you out even for a little while.

Coach Wayne 17:02

Yeah.

Coach Stacy 17:02

How how can we begin to prepare, plan with that leadership mindset, you know, to be a caregiver that it's not as stressed out?

Coach Wayne 17:15

Yeah. There's some tough, tough questions that oftentimes we don't pay attention to medically. You know, we don't have a plan for decision making. You know, we don't have a plan for, as you said, who is responsible for for uh picking up some of the bills for uh for facilitating space. It's just a lot of that for decision making in terms of again back to the medical stuff. We we just leave it to be, which puts a lot of stress on on folks. And uh, you know, we talk about uh Stacy, it it's not easy oftentimes to have these discussions. And I think again, one of the things that I encounter with black men as they uh get in the business of protecting and preparing and producing for their families, they think it's a sign of weakness oftentimes to say this is a lot and I need some time for myself, some mental health time, some time to to step back and take care of me because they are carrying the world on their shoulder like atlases. And it's important that you know, again, we check in and be honest with ourselves in terms of how much can we hold up.

Coach Stacy 18:47

I thought reflect on, don't know if it was last episode, but last couple of episodes, and we were talking about these types of conversations and the experience of the inability to articulate what you need. And so often, and and so what I just heard from you, you know, about men is just that, and I think that women experience that as well from this standpoint of, you know, I got it, or I'm always making it happen, you know, no one else is taking care of it, or you know, I'm alone in this, and so I'm going to carry it, I'm gonna move through, I'm gonna persevere, I'm gonna press through, and we don't take a moment to acknowledge that maybe we're not okay, to acknowledge our need or that we have a need, even if we are can't get the words to articulate it. But it's so important that we begin to articulate our needs so that we can create a plan that helps us begin to feel better, even if we don't need to implement the plan, right? But having a plan and not needing a plan is much better than needing a plan and not having a plan.

Coach Wayne 20:24

Yes, better to be prepared always is insurance on us, right? Stacey, so that you're talking about re brings the conversation around to mindset. We we gotta have a mindset as advocates, as planners as well, and in in changing the mindset from this being a burdensome role or a challenging role, to a mindset of we're advocating and we are part of our responsibility is to move as planners.

Care Planning Starter Checklist

Coach Stacy 21:03

Yeah, yeah, you're absolutely right. I think we, Wayne, are in a position not just because of our coaching education and experience and all of that, but as midlife people, right, who have been in situations and served as caregivers to offer some practical planning ideas. So let's, you know, let's let's give our listener maybe a little bit of a starter checklist to begin to move through this, right? We're not just gonna say, like, okay, you should do this and not give you any tips to do so. So in your care planning starter checklist, I think first is to really identify who will serve as that future. future advocate or guardian for the person or person you're caregiving for.

Coach Wayne 22:09

And start now, not later, your financial planning for long-term care.

Coach Stacy 22:18

Yeah, and start can just be assessing, looking at where you are, right? We want to be very practical about this. You also want to document the medical needs and the care routines so that, you know, you break that toe, even if you're out of the home for a day, that those medical and care needs are documented and someone can jump in as best they can and follow your plan.

Coach Wayne 22:54

Yeah. It's also important to do your research, research community programs and support organizations or or or call on people, you know, people that can show up for you in terms of support.

Coach Stacy 23:10

Yeah.

Coach Wayne 23:10

Have a list.

Coach Stacy 23:12

Absolutely. And write down what your current needs are, even if they're small, so that you can begin to have those family conversations or that network conversations. Maybe you don't have family that's accessible to you. Have that network conversation that begins to articulate your needs so that in community you can begin to have those needs met.

Patience, Needs And Burnout

Coach Wayne 23:44

Yeah we're we're really focusing on planning today Stacey. We're not leaving this up for a chance. And you know we're talking about people that we love and care about and it shows up in many ways, right? It shows up in terms of our patience. I've seen it I've seen I've seen people lose patience with the elderly or with disabled children because they're not walking fast enough. You know they're they're not getting in the car and strapping on their seat belts fast enough or at all. And it's just a shame you love someone you have to to exercise some patience and sacrifice Stacey.

Coach Stacy 24:30

Yeah I do believe that it goes back to connecting with your needs right of times we run out of patience because our own needs are just not being met. And I've witnessed couples right where one couple elder couple where one partner has dementia and the level of patience required right when someone that you know used to be so very capable of certain things is now no longer capable. And you're saying to yourself why in the world are you doing these things that you know are not right but in part you know our frustration comes from the fact that we forget that they really don't know anymore what is not right and the level of patience that is required is hard to quantify. So powerful yeah it really you know I I'm a witness more than once the level of patience is hard to quantify and often it is that that taking that opportunity to step back take a beat have a breath and say what do I need right now maybe what you need is just that moment.

Coach Wayne 26:12

Yeah. Brings it home I've worked with a client two clients a couple and so the one guy is is diagnosed and he's going through some stuff and he's not moving like his usual self he's definitely having a mental health issue and his partner who is known him as a frisky go fun loving guy is pulling away. And it's very scary for the person who has loved and committed to the relationship in this time of need to feel unsupported and here's the kicker a newer psychologist in doing their testing has clearly said hey some of the responsibilities that you are expecting or used to see fulfilled are no longer in their capacity.

Estate Plans Coaching And Sharing

Coach Stacy 27:33

It's because they cannot there is some stuff happening with their brain automatically and it's almost it's so sad it's heartbreaking to see that person being tossed aside when when they're not doing it purposely right right right right right and it is again tapping into your your needs what you might need at that moment and thinking about and and almost that reality check right of oh right this person is not who they used to be or you know this person is just not capable of doing what I want them to do right now right that is just not to your point within their capacity and acknowledging that and showing yourself some grace in the process. That's why we really believe that this planning can really be helpful it can be part of showing yourself grace. You know I don't know about you Wayne but for me as as a single parent I experienced a weight lifted when I prepared a will a living will you know when I did some estate planning just to make sure that those details wouldn't be up in the air right and that burden wouldn't be on my son to like figure out like I don't know where anything is. And so it is the relief of pressure that planning can provide so we are not being Pollyanna we are not saying everything is super easy and the plan will cure all but the plan will help to relieve some weight I see tied up all the time Stacey all the time you know it's so funny the regular legend Bob Marley was supposed to live forever I guess right he died in his 30s and do you know that his estates was tied up for more than a decade because there was no planning no plan no plan and how much time and energy right did that did the family right he had a a number of people there but how much time and energy did they did they spend not loving on each other not caring for each other but really trying to figure it all out and you know our hope is that this idea you know that many of you have created plans you're caring for someone and you have a plan and as you run into others consider suggesting that they have a plan too and I don't know about you Wayne but I would say that coaches you know that we're not only here to talk about mindset. You know sometime a coach can help you through just the practical to-dos that you need to do in order to alleviate some of the weight right to walk through it with you to partner with you to get some of these things done so that your mental physical emotional health is just a little better.

Coach Wayne 31:15

Yeah yeah we're your ride along buddies Stacy you know we we we can be your soundboard your reflector because again what we don't do is tell you what you ought to do we guide you and allow you to to figure it out with our support right and and we can be a source of resourcefulness and help you to to move along nicely and speaking of that Stacy how do the good folks find you and get some of your fantastic coaching skills I appreciate that Coach Wayne I can be reached however you are watching this episode whether it be live or the replay hey to the replay folks that I can be reached on the social channel or I can be reached at the T-E stacymlewis.com that's me how about you coach Wayne Stacy I'm going to be transparent just before we go and say that I've been in Facebook jail for this month and I I I violated I violated some rule and so we're not broadcasting live on Stacy it's gonna happen at the end of the month.

Coach Stacy 32:32

So we're here in LinkedIn and wherever else we show up but the replay will be dropped so just so you know they're feeding me well I'm in jail but they're feeding me well Stacy I get visitors and all that stuff well I will say that in if you're catching this as through one of your favorite podcast players please know that our contact information is always in the show notes.

Coach Wayne 32:54

We are here to be a resource what would you say is your final reflection here Coach Wayne I think you know it's so important and and a lot of times at midlife people come to you to us because of the wisdom the fact that you have lived through and you're you're not necessarily still kind of figuring out life and because you're at that place either you take on the responsibility or it's assigned to you to start taking care of folk especially as we said before those with special needs or those that need long-term care. And the most important thing is to recognize that we we can accept that with grace and pray about it, reach out for others to get support but plan for it. Don't just jump in blindly because then everybody could drown if you're the life support.

Coach Stacy 33:51

So make sure that you got your floaters on you've planned and then you dive in so true I I would add that love is planning ahead right that's what that's what you just said and consider if this is not the episode for you think about who you know that could use your support consider sharing this episode with them and encourage them along the way help them with some of these planning questions. You know sometimes we get caught in a little overwhelm and what a powerful resource you can be as you bring some of these questions some of these tips to someone you know is silently suffering under the burden of caregiving.

Coach Wayne 34:48

And Stacy before we go I would be remiss if I didn't say all month long we're celebrating you and all the most powerful women that are making things happen. And so I want to just wish all the women happy women's month more power prosperity and peace to you all here I'm cheering you on.

Final Reflections

Coach Stacy 35:14

And I will see ya at the top thanks for tuning in to Midlife Revolution Unleashed.

Coach Wayne 35:23

We're grateful you're part of this journey if you love this episode share it subscribe and hit that notification bell so you don't miss another episode.

Coach Stacy 35:32

I'm Coach Stacy and I'm cheering you on.

Coach Wayne 35:35

And I'm Coach Wayne and I'll see you at the top