Episode 3: Should They Stay or Should They Go?

In this episode, Hilary and Lisa dive into one of the toughest care decisions you’ll face – should they stay or should they go? Truly understanding what’s involved with caring for your parents as they “age in place” versus moving them to a senior living community is the key to making the best decision for your whole family. Among the important considerations they share are determining your capacity to manage your parents’ household and caregivers and setting realistic expectations about costs and logistics.

We'd like to thank our parents for inspiring us to pay it forward. And thank you to Adam Rochelle for creating our musical vibe. Like what you hear, check his music out at prndlmusic.com

Transcript

 Episode 3: Should They Stay or Should They Go

Hey, welcome back. Let's keep talking about Trading Places, our podcast that dives into all the issues that come up when you swap roles with your aging parents. In this episode, we're gonna talk about one of the toughest decisions to make. It's whether they should stay. Or go. 

Yeah. When we asked our parents about leaving their home to downsize or go to kind of a senior living community, we figured we'd get some pushback, but not as bad as we got.

Nope. 

No, our mom actually said she wouldn't leave her home until she was in a pine box, but that's 'cause her home reflected her entire identity. She was an interior designer and she was also the matriarch and had always hosted all of our family gatherings. And then our stepdad. Remember him and all of his books?

Yeah. 

He was a writer and professor. He was a business futurist, and he just couldn't imagine leaving the comfort of his office and being surrounded by all his beloved books and. And then neither one of 'em really wanted to watch their beautiful home being taken apart. 

I know. I remember standing in his office and looking at his shelves and thinking, oh my gosh, how are we gonna do this?

I think I got hives! 

Yeah. Then, and later on. 

Yeah. So, um, I'm Hillary. Hi and Lisa here. We're sisters back at our kitchen counter, and we're ready to continue our discussion about caring for the parents who've always cared for you. Now that you've broken the ice by having the initial conversation with your parents – we talked about that in our last episode, and now you know, kind of what the landscape looks like. You have a better sense of their health, their financial resources, what kind of control or agency they wanna have, or you wanna have. And your caregiving capacity. It's time to figure out where care will actually happen…and address…should they stay? 

Or should they go? 

So, and that is an incredibly emotional decision and we've talked a lot so far in this podcast about having your eyes wide open. Um, if ever there's a place to do that, it's here, 'cause this is where we made some really big mistakes. 

So we're hoping maybe our experience is gonna help you do a little better than we did. Um, so we'll start by talking about staying. I mean, if your parents wanna age in place. Do you really understand what that means? I mean, do you think we did? 

No. 

Um, I mean just 'cause you've got the space and you can put in-home care in place, that doesn't mean you're equipped to handle it.

Right. 

That was a huge mistake. It was really hard, ‘cause I think we had a false sense of security, that they had space to accommodate someone if they needed to live in. And there was so much more to think about. So you wanna really consider the amount and type of care that's needed.

Um, and this is where you really need to talk to your parents. And you have a ton of questions to ask. Um, you know, how much support do they need? How many hours will someone be in their house? Will the caregiver move in? Can they cook for them? 

Will they have one caregiver or are they gonna have a lot?

Yeah. Is their home set up to age in place? 

Yep. Do they have the room for the caregiver to stay overnight or, you know, and here's the big one. Who's gonna take care of their home and work on the repairs? ‘Cause guess who did it in our case? 

Yeah. Well, and that was a huge blind spot for us. Oh yeah.

We had no idea. We were so busy dealing with other things. Yep. You know, ultimately when they were gone and we discovered all the things that hadn't been maintained. Yep. It was really tough. That was a lot more work than we planned. 

Yeah. 

There was food, taking care of their food and, you know, and, and chauffeur service.

Yes. How do they get to their medical appointments? 

Right. How do you get them just out of the house? Um, you know, do they have all the right equipment in the home? Yep. Um, do you need to make changes? You know, one of the things that we had to do is to pick up rugs. Oh, I know. 

That was a killer. They had, they had pretty rugs, runners and stuff, but there was such a tripping hazard.

Yeah. And then bars in the shower. And, um, you know, one of the things you might consider doing as you think about the kind of care you need, and we did this, we had a geriatric care professional come in and kind of do an audit of the house. 'Cause they'll look at things in ways that you might not necessarily, um, you know, like are the hallways wide enough?

Or, you know, if your parents need a walker or a wheelchair. You know, so putting together in-home care is not a one and done. It changes. And it's also um, like having a third party come in and saying this needs to be changed. That needs to be changed. Yep. It's less about you as their child telling them what to do.

And it's more from a space of safety. 

Yep. I think we actually had the geriatric care manager back, you know, another time because things will change. You know, you, you might get a model set up at one point and then, you know, um, things change. Your parents' health changes. Caregivers don't always stick around.

So, um, so just be prepared for that. And also think about what's affordable. I mean, can they afford at-home care with or without long-term insurance? Um, and if they have it. You know, chances are as we found out, it was more than one caregiver. 

Right? And because if you have, you know, someone staying overnight, there are regulations; they need to sleep, right?

So there's a lot to think about. And, you also have to think about, um, you know, what you specifically have to manage. Yeah, we didn't know that. Because it's not enough just to say, oh, we've got care. Doesn't mean it's all done. There's a lot to manage because there's communication about medications and things that, you know, with multiple people coming in and out.

What happened during the shift before? And I think one of the things that really helped us, oh, this was you, you did this, is we created a log. Yep. Just like a handwritten log. Yep. So that they could even put questions on it or things to think about, like what might have come up during the day, what medications happened?

I actually created the medication log as well, so that there's a place to record where issues or incidents may have happened. So the next person coming in, or even if we came in, we'd know what was going on. 

And yeah, you need those transitions. I mean, 'cause that's part of, um, well you need to know what's going on with them, but also it helps connect the caregivers, you know, 'cause harmony among the caregivers is really important.

And that isn't something that we thought about. And it may sound trivial, but we had caregivers with different philosophies and, we found out the hard way that, you know, um, if they, if they. Have different philosophies and they don't get along, that could kind of blow up your household a little bit.

[00:07:33] I mean, we actually had a caregiver war that we weren't expecting. You know, they weren't on the same page. We had a housekeeper that was not getting along with one of the caregivers, they were at odds. So, you know, that kind of tension and having to manage that. That's something, remember we never planned.

Yeah. It was really hard. Yeah. Like I remember a thing that blew me away was talking on the phone, driving to work like, oh my gosh, are we really dealing with this? 'cause you know, everybody has great intentions, but they have to understand what their roles are, and we got involved right in talking about their roles. And at certain times it was important to have everybody in the same room, right, or on the same page, to really understand who's doing what. 

Well, and also to understand what kinds of things the caregivers will do. And this is, again, this was a blind spot for us. You know, food, we, we talked about this a lot, but, you know, caregivers are not cooks.

So if your parents are at home, you're gonna have to provide food. They can serve. I mean, and we did have one caregiver that kind of got a kick out of those meal box delivery services and she would help put those together. But, that's not a requirement.

[00:08:47] Right. And not all of them will do it. Somebody still has to go out and get the food. Oh yeah. So who's gonna do the grocery shopping? 

Yep. 

And we were doing a lot of the grocery shopping 'cause the caregiver was not gonna leave them. 

Right. And speaking of leaving, who's gonna do transportation? 

Right. 

Parents are gonna have to get to places, whether it's medical appointments or social engagements. I mean, are they gonna drive your parents around? Do they have a car that will work? 

Do they have a car that will fit two walkers? Right? Like I remember taking them, this all happened sort of during COVID.

Yep. And taking them to get their COVID shots. Yep. And putting in two walkers. It's a lot, a wheelchair in the car and managing that. So can that person do that? And um. You know, are you responsible for their transportation? Yeah and expenses. I mean, we had a caregiver that actually got a new car and then kind of expected us to help with payments. So, it's totally fine to pay for expenses while they're transporting your parents. But that went a little overboard. 

That was a little overboard. 

Well, and so where are you gonna find these people? You know, you wanna understand what they can do, but where do you find good caregivers?

I mean, and we found that pretty much the options are to either hire an agency or find them on your own. And there are definitely pros and cons to each. 

Yeah. I mean, I think, um, if you are going with an agency, um, we did a little of both, but yeah with an agency, the pros of that is you have better coverage.

Yep. Because if somebody gets sick and they do, or somebody needs to take a vacation, yep they’re responsible for covering you. 

Right. 

Um, they're gonna go out and find the next person to take a shift. 

Well, they have backups. They do background checks. Yep. They do training checks.

Yep. They look at credentials. They pay taxes, they have insurance. Um, you know, they're more keyed into certifications and doing all sorts of the payment stuff because if you do it on your own, you are responsible for that. 

Um, you know, the one place I would have a caution there is, you know, just because they tell you a caregiver has been trained a certain way, I mean, keep an eye out and do your homework, because we did have one. And, look, the woman was lovely. Yeah. And our parents loved her, but she really wasn't equipped to handle emergencies. Our mom had a fall and she didn't know what to do. Um, and she should have used the, we had an emergency alert system.

She didn't use it. So just be really clear. You know, if, if you're told they have a certain kind of training, can they actually put it into practice? 

Right. And I, um, you know, I wouldn't just go with the first agency. Exactly. And you wanna, I mean, obviously word of mouth is really helpful. If you have, you know, friends who have used certain agencies and you get some feedback, that's a really important thing.

Or if you read reviews, I mean, there are so many agencies around. Um, but it's, it's really good to just make sure you talk to a few. 

Yeah, and it's also ok if you go with a particular agency to ask if they have references. 

You can have references, and you can ask for the person, the actual caregiver to come in for a visit to see if they connect with your parents.

Like if they, you know, have good camaraderie with your parents. Yep. It's important. 

Well, but one thing to remember with agencies is the caregiver works for the agency. They don't work for you. And, you know, there are good things and downsides to that, but the agency's definitely gonna monitor and limit the number of hours they work.

You know, there are, like Hillary mentioned before, there are requirements, you know, if you have a live-in, you hire a live-in, they are required to sleep at night. So then the agency is gonna say, okay, they have to sleep at night. Now you're gonna have to pay for an extra person to come in at night if your parents are up in the middle of the night.

Which ours were. 

Yeah, I mean at first it was fine. Yeah. But then there were some falls then, um, they needed help in the middle of the night. So, um, eyes wide open.

Yeah. Maybe another person comes in and then sometimes, um, you know, they have minimums too. Sure. So like you, your parents might just need, you know, help for an hour or two in the morning.

Yeah. And then, you know, an hour and two in the evening. But an agency won't do that. They're not gonna do that. So most caregivers aren't gonna do that. Yeah. You have to kind of be clear. And maybe there's some other things that the caregiver could do. Yep. Like maybe they're okay to be left and they could go do some of the shopping if they need that or help with laundry or you know that’s between you and the caregiver. Right? So I think, um, you know, then your other option is finding your own caregiver. Yep. And, um, you can find some wonderful people. 

Yeah. 

Um, doing that, especially with word of mouth. Um, but you know, the pros of that are it is less expensive. Yep, 'cause you pay them directly.

[00:13:55] Yep. And the agency isn't taking a big cut and you have some more flexibility with them. Yep, and they're working for you. So the communication is different. You're the first line of communication. Um, and so you have some loyalty there. Yep. But the cons are, you know, if they get sick there's no coverage. I mean, you are on the line and you have to do background checks.

Right. You know, another thing that's important to know is, you know, you can do a background check. Um, an online background check and you might not find anything but recognize that, you know, a caregiver if they got into any kind of trouble, um, they're not gonna have a police record unless they were convicted of a crime.

So you, you really do have to do a lot of digging. 

Right. 

You also have to realize there's no insurance. You know, if you hire them on your own and you have to pay employment tax and you really don't have any control over what their certifications are. 

Right, right. And there, unfortunately, there's a lot of elder abuse out there. Yeah. And it's not, you know, physical abuse or anything like that, but it's just like people taking advantage of a situation and being in a home. So, you know, that was hard. 

Some of the things you see are really kind of, it's tough. So, you know, you need to um, whether you've sourced a caregiver from an agency or you're bringing them in on your own, just have your eyes open when somebody comes in. Um, and be clear about the limits on what they can't do, like, um, for medications. They're not organizing your parents' medications or pills. 

No. That was you. 

So I came in every two weeks and you know, I had to create a whole like visual spreadsheet.That was printed and on the counter because inevitably something got messed up. Yep. And you're on the hook for the medications. 

Right. And, and then, you know, there's like the whole, you know, our stepdad had diabetes. Yeah. And so he was insulin dependent. He was able to do it on his own for a while, and the caregivers can cue, 

They cannot give shots though, and they cannot give injections or anything. So they can help, you know? They can technically, you know, remind your parent to check their blood sugar, they're, they're just not responsible for that. Right, right.

And if you have some mobility issues, can they handle a Hoyer lift? 

Yeah. Can they move your parent from one place to the other? Yeah. And that was a concern for us. 

Yeah. Um, we talked about certifications, what they're capable of? You kind of need to have an idea of what the credentials are. I mean, there are different kinds of caregivers. You know, there are CNAs, which are certified nursing assistants. And they're, they're qualified to do a little bit more. There are HHAs, which are home health aides, and kind of depending on what your parents need, understand what these credentials mean. Yeah. Like CNAs go through a training and certification process and they provide hands-on healthcare.

They help their patients with activities of daily living, like bathing and dressing and home health aide are less credentialed. 

Right. But a CNA can do, like they can check vitals. 

Yes. They can check vitals, they can tell, like they can check blood pressure. Right. They can check, um, you know, numbers.

They can just give  a sense of what's happening. Right. They can't solve any problems.

No. The home health aides are less credentialed. You know, they're more, yeah, they can help with bathing and dressing and stuff, transferring light housekeeping. But they're not, you know, they're not credentialed the same way as CNAs.

They're more of a companion. 

Um, so that's the stay, 

That's the whole stay equation. Let's talk about going, 

If they're going. You know, our parents ultimately stayed in place. Yeah. But we did a tonof research because we were trying to get 'em to go, 

We were trying to get them to go 'cause it got to be really difficult to manage it all. Um, and so when you think about them going again, there's a lot of homework and there's also a lot of resources out there. I mean, you see things advertised all the time. Sure, for different resources in your community to help you find the right place for your parents.

But nothing works better than visiting them, though. Yes, you do need to go, um, for a visit. Um, and some of the things you wanna think about are like, are your parents mostly independent? Yeah. What do they need? And do they just need some scaffolding? Um, or do they need help with their daily activities of living like getting dressed and eating in the morning, or just getting themselves up and moving? 

And think about what they want. I mean, if they're even considering moving, do they want more community? Do they want more social interaction? You know, do they wanna cook for themselves or do they wanna go to a dining room?

Do they have cognitive issues and memory loss? How mobile are they? 

Yeah. 

Are they in a wheelchair? Yeah. Um, that’s all gonna affect the kinds of communities you look at. 

Um, and if they do have a long-term illness that requires daily medical intervention. Yep. Um, that's a huge thing to consider.

Cause a lot of the, um, you know, senior communities, they're not set up for managing any kind of ongoing medical intervention in that case.

No, the only kind of place that does that is skilled nursing. Right. If they have a skilled nursing facility. If they have that as a step. Yes. Um, another thing we were looking at is, is there space for them to be together?

Yeah. Because you might have one parent like we did – one parent that has very different needs from another, you know, one might be more ambulatory, the other one might not be. You know you don't wanna separate them, if you don't have to. Um, and what is the cost of that? God!

[00:20:01] Because some of it, it's just oh my god, doubling the expense and sometimes it’s more of an add-on for a second person.

Could they have their pet? 

Yep. 

In a lot of places they may not be able to have their pet. 

Yeah. Cost is a big thing. Yeah. I mean, we looked at that too. Sort of what you pay for kind of depends on the level of care and also its, you know, your geography and the type of insurance if your parents have it.

Um, but just to run through them kind of generally the different kinds of communities. There are, um, care homes which are…those are small, um, and not regulated private facilities. Um, they usually have 20 or fewer residences, and they, basically provide personal care and meals.

There is 24 hour staff support, but there's no onsite medical care. Um, they can be lovely, but you know, again, they are not regulated.

And might have limited services. 

Yeah. And then there's like, there's, um, independent living. Yep. And these are residential communities that are designed for older adults who can live independently, but want a maintenance free lifestyle with access to social activities and convenience amenities.

And they don't have to take care of their home. They might also offer, um, housekeeping and meal services and transportation and recreational programs. 

Yeah. A lot of 'em had a lot of really nice enrichment things. Enrichment opportunities. Yeah. And, um, they, but they can be expensive. Yes. And, um, you know, they could be, you know, an apartment or a cottage and, you know, some of them are in different conditions. But, um, you know, it is definitely more independent. 

There's more independence, there's no direct care associated with it, right? If you wanted care for your parents and you put 'em in an independent living community, you'd have to hire care, right? Whereas the next step up, assisted living that comes with care.

So if your parents kind of need help, um, but not extensive medical support, you might think about assisted living. 'Cause you know, the residents again, typically live in either a nice little room or a private apartment. Um, and they get help with meals, personal care, medication management. They do get housekeeping and laundry and 24-hour supervision.

Um, the level of care, again, a lot of them, it sort of depends on what you pay for. Um, and some of the assisted living organizations are part of larger organizations where you might start in independent living and transition to assisted living, and then, you know, the community might offer skilled nursing as well.

But even with an assisted living, I remember there was a varying degree of support that each of these communities offered. I mean, I remember one was just, um, they said they could take care of our parents, you know, even if they were in a wheelchair. Yep. And some others said, oh, we only offer one or two hours of care a day. Right, right. So it varies. 

Yeah. And then, you know, if you, um, if they need more help during the day, again, you might be bringing somebody else in. 

Right. 

Um, and then if your parents get to the point where they really do have medical needs, they require medical care and supervision.

That next level of care is what we mentioned before. People refer to them as nursing homes or skilled nursing facilities. Um. And they offer 24-hour supervision, nursing care, they're medically supervised. You know, the meals, assistance, everything that an assisted living would, but with the medical care as well.

And, um, sometimes a lot of these places offer some sort of short-term rehab. Yeah. So sometimes if your parent, like our mom, had a fall and had to be at one. For the short term. And sometimes those are covered by insurance, but not long-term stays. Right. Um, so that's something to keep in mind.

But those are also like more of a medical setting. Yes. It's like, it, doesn't feel like a community. 

Some of them they try. 

Yeah, they try. But it is a medical facility. 

It's like a hospital. 

Yes. Yeah. 

Just a bedroom. 

It's rehab and it feels like rehab. Yeah. So it has, you're right, it has a very different feel.

And like we mentioned, you know, the whole idea of continuing care retirement communities that might allow you to transition from one to the next, right? That independent to assisted to skilled nursing. Um, but you know, really, so you say, okay, that's a ton of information and where do I even get started?

Go look at places 

And yes, absolutely. We did that well because, you know, you’re there. One of the things you also might consider, I wanted to circle back on the, um, assisted living. 

Yeah. 

There are assisted livings for memory care. 

Right. 

So just because you know, your parent has cognitive decline or dementia, but they're physically.

you know, very strong. Yeah. And mobile. They're wonderful communities. Yes. Where they can have their own little apartment and be a part of a community. But the care and the programming is, it's different and geared towards people with, you know, memory loss or dementia or Alzheimer's. Well, and the beautiful thing about that is that there's still enrichment.

Right? Right. 

You know, it isn't, oh, you know, your parent has cognitive decline and they won't have enrichment. I think a lot of the memory care places are very good about that. 

So we did, I mean, I think we saw a lot of places.

We did. We visited everything. And um, it was really helpful and very eye-opening because they have a vibe.

You get a vibe, you can vibe. Huh? You definitely get a vibe. Um, but you can also, um, like, you wouldn't ever think about this, but like, if they're going into a place where they're on a floor, is it set up like a neighborhood? Like are the rooms in a circular place around a common living area? And where's the elevator?

Yep. Like I remember, you know, our stepdad wanted to think about maybe downsizing and living in an apartment where there were a lot of seniors living there but there are also a lot of long hallways. 

Oh my gosh. 

It was not around the common living area. That was really eyeopening I think, for us, because that became like a central thing about, well, where's the elevator?

Yeah. And also where are the other people? 'Cause when we were looking at this place, like the, the hallways were empty and our stepdad wanted to be social. And with long hallways he got tired. Remember that? 

Yeah. And it felt like, um. You know, at one point, you know, the show, um, what is it? What is that show? It's, um. Where the long hallways are. 

Oh. Um, oh, Severance, Severance. 

With, like you're just wandering from hallways, trying to figure out where you are. Well, and he got exhausted. We had to have him sit on his walker and we were pushing him and he was big that was very stressful.

So yeah, little things. So you visit, and we were ruling out long hallways visit when we visited, little things like that or big things like that. Or, where is the bathroom if they're gonna be in an independent living apartment? Yeah. Is the bathroom right next to the bedroom? Yep. Because some of 'em, they have to go out of their bedroom through a living space to a bathroom.

Yeah. That's not trivial. No. Especially as parents age. So 

That's why visiting is so important. Um. You know, and then, and then another thing to think about is, um, are, are the expenses covered or not covered? And unfortunately, most of the time it's not covered. But this, again, do your homework, be clear on what insurance might cover and not cover.

I mean, our parents didn't have long-term care insurance. Long-term care insurance, um, often covers the cost of at-home care or these communities. A certain percentage. Certain percentage, yeah. But you know, that was eyeopening for us 'cause our parents had Medicare in a really good supplemental Medicare plan and, and none of their, none of their expenses were covered. Only if there was an incident. 

Right. When we had, well, yeah, mom’s fall. Then as we mentioned, the one thing about the short term rehab stay - that was covered and medical equipment. 

Yeah. But, you know, so Medicare may cover the short term rehab stays, medical equipment, visiting nurses if, if they need follow up, but you know, understand what your parents have. Um, and, you know, things change all the time with respect to Medicare and Medicaid. So just sort of be up to date on that. 

[00:28:45] **Hilary:** Yeah, I, I think there's probably more that we, more financial assistance we could have had, but because we were in the heat of the moment 

Yeah. 

It was like we just tried to get done.We could have done more homework ahead. Yeah. Could've done. I mean, I did look into a fair bit. Yeah. And I, you know, more often than not, found that. Things weren't covered, but you never know. You never know. Yeah. So the more you can do your homework ahead of a crisis, yes.

Because doing it in a crisis is huge. That's a huge message. So, you know, for our parents, we made the decision, you know, as a family to let them stay at home because that's really what they wanted. Yeah. And, um, they couldn't fathom giving up the comforts of their home. And, um, it just was a better situation for them. It's what they wanted for the end of their life. And we loved them and wanted to do that, but it's not for the faint of heart.. And we found out, you know, the hard way. I think looking back, we may have tried to push them into a different situation had we really understood what it was gonna be.

Like for us. Yeah. And I think there were days you and I would be on the phone with our brother and we're like, this is just not sustainable. How are we gonna do this? How are we gonna cook? How are we gonna manage? And um, still be their kids. Yeah. It just is really, it's kind of hard. 

It was hard. I mean, should they stay or should they go? Neither is perfect. You know, it's really about priorities. So look, you know, we have gone through a ton here. Um, and we wanted to leave you just with some salient things to remember and the kind of whole, should they stay or should they go equation.

I mean, one. Make sure you're in, you're clear on everything involved. If they stay, you know, including the space, the home maintenance, finding caregivers, managing them, and managing food and everything else your parents might need. 

Yeah. And think carefully about the kind of caregiver you want. Based on, you know, who your parents are and you know what they're looking for.

Mm-hmm. And if you're thinking about moving them, you again want to think very carefully about what different facilities and communities might offer them in terms of, you know, space and engagement and levels of care, and the ability, you know, to transition from one level of care to the next. Yeah.

Because are you gonna be just getting them settled and then have to move them to a totally different place? Right. 

So, understand what the costs are that are involved. I mean, really do your homework, um, with your eyes wide open about expenses, with either having them age in place or moving to a community.

And, most important, be very clear about what you can handle because we didn't think about that as much, but that is a factor. I mean, so think about what you can handle in terms of providing care and managing your parents' caregivers and maybe their home.

Right? So my teacup is empty and I definitely need more coffee. And it's time for us to sign off. So we hope you'll catch us for the next episode as we continue to walk a little further down this road of trading places. 

Bye 

Bye.

Before we wrap up here, we just wanted to take a minute to level set about our conversation. Remember, this is just the two of us sharing our journey. Our comments are educational and shouldn't be taken as advice or as a prescription for caregiving. Instead, think of it as a starting point for your own journey as you figure out how to care for your parents.

We'd like to thank our own parents for inspiring us to pay it forward. And thank you to Adam Rochelle for creating our musical vibe. If you like what you hear, check out his music at adamrochelle.com.