This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you ever thought, I wish I knew how to have a constructive conversation with my manager about how to align my work responsibilities and my caregiving responsibilities? Yes, I have. In this episode, we're talking about strategies to help working family caregivers thrive at both work and at home. We're sharing four tips. Music Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Caregivers often feel torn between their responsibilities at home and their professional responsibilities, which they're trying desperately to fulfill, often without support. According to the Alzheimer's Association, of the 12 million family caregivers for people with Alzheimer's and other dementias, approximately 7.2 million are working in paid employment outside the home. That's a lot. That is a lot. My own experiences when working full-time and also navigating roles of caregiving taught me how challenging this is because I was on these caregiving journeys for many years. I never self-identified at work. The company culture that I was in was never supportive of that. So I really can relate to what it felt like. And I know that I'm not alone. You're right. This leads us to tip one, which is to self-identify and strategically disclose. Yeah. We want to learn how to explore safely. Right. Sharing what we're navigating and being able to advocate without fear. So it's really important because we can't get support if the company doesn't know we need it. That's true. So we need to try to figure that out if at all possible. Yeah. And so one of these statistics, and in this episode, we're actually sharing a variety of different kinds of statistics. One of these is from the National Alliance for Caregiving, often known as NAC, and then also AARP. And they've both identified that fewer than 20% of employees who are also family caregivers actually self-identify in the workplace. And that is, that's really, really challenging. It's got a lot of problems that are associated with it, but it's challenged because they've got fears for job security. They've got fears for privacy concerns and also stigma that might go along with it. So there are a variety of different kinds of reasons that people don't self-identify, none of which are very helpful at a time when you really need the support as possible. So, true. Safe disclosure begins with each of us. One of these is assessing our company culture, learning how the company already addresses temporary seasons in our lives. Some companies through their Family Medical Leave Act, or FMLA, some of it through how they handle different kinds of maternity or paternity leaves, or bereavement. Right. An example. Examples of this are companies who've already implemented policies, one of which is Deloitte, and they implemented a family leave program that provides up to 16 weeks of fully paid leave for caregiving purposes. And this includes elder care. They, this policy allows employees to take time off for caregiving without sacrificing their income or job security. Wow. Yeah, that's huge. It is huge. And another company who's done this is Microsoft. And Microsoft has a family caregiver leave policy. And it provides up to four weeks of paid leave for employees caring for immediate family members with serious health conditions. Wow. So it's great that companies are seeing and recognizing this. And it also helps when we're figuring out how to have a conversation because there are examples that can already be modeled. You can say, well, this company has figured it out and there are companies of different sizes who have done it. So what we want to do beforehand is evaluate how supportive our workplace is with embracing these work life issues of other temporary seasons. And you can do that with having conversations with other people, learning what they've been talking about and see if other employees are sharing openly about their caregiving responsibilities. Right. Well, and like you said, it's less than 20% are doing that. Yeah. I was fortunate enough to be in a company culture. The last company I worked for, what I worked for 26 years. So I was very well aware of the company culture, but I was fortunate enough to work for a company that had a very supportive company culture. So I disclosed immediately. And this included with my father's Parkinson's, which he had for 25 years, my husband's dementia and my father had lost dementia. And I think the real advantage to disclosing so to this tip in terms of how do we figure it out is that if you disclose early, by default, it's not affecting your job as much. So you're disclosing at a time where yes, there might be some effect, but you can start to build that collaborative path together with the organization, with your management team, with your supportive, your support team. So as it builds up and it does start to affect things more, you've created a path that works or at least a collaborative culture with your team to where everybody can work together. As opposed to waiting until it's causing huge problems. And now you've got a big gap between what you can do at work and what you need to fail for caregiving responsibility. What I think is so important about what you're saying, Nancy, is it's really counter to what people have traditionally done. Right. They've tried to do it on their own until the very last minute. They didn't want to burden anybody else. They didn't want anybody else to know all of these other things. And you're actually helping flip the consciousness of it to say, no, instead of waiting till it's really, really a big deal and you're going to need to take a lot of time off. Gradually start when people are just aware of it and then they can be building policies or they can be practicing and saying, OK, well, if I'm not here, then what would be and it's kind of like when you think about someone who is pregnant. Well, they're not going to go out on the turn. You leave town. It doesn't just happen without anybody knowing. It's like, oh, no, we had no issues. She was going to have a baby. Oh, really? So if you think of it like something like that, we're in the ramp up in the beginning, but when you've got months and months to say, hey, when I'm not here, you know, let's do this. So you'd have the ability to adapt. And that's really kind of the opposite of the way many family caregivers have thought about introducing this at work. So that's it. Really, really powerful. Another thing is to plan your conversation. Think about it beforehand and to kind of walk through what it might look like so that you've really been able to kind of consider all the components of it before you go either to your direct manager or to your HR representative. And that's going to vary by company. And whoever you feel the most comfortable with. That's what I think. You know, some people are more comfortable with their manager. Some more comfortable with HR. It really doesn't matter. Somebody, you need to have that initial conversation. Have the initial conversation. And yet, especially if they do what you've talked about, about bringing it in early, you're talking about your commitment to working with the company and you language it. So it's like, I'm navigating this caregiving season. I am fully committed. So you're able to collaborate together from the very beginning and do that. And then also focus on solutions. Right. You know, you've already thought through kind of kind of think through some of the things and you may have already talked in support groups with other people who have had caregiving responsibilities and what they've done at work and things. So when you go in, you already have identified solutions and potential things you can be bringing and you can have meaningful conversations. I think that's really important. You know, it's a much easier conversation with your manager or even HR. If you and don't get married to the solutions. Let's put it that way because they may or may not work for your company. But people would much rather hear about a challenge that comes with potential solutions than just a challenge that you, you know, put in place in their lap. Right. So I do, I think that's a great plan. Come with a solution. And then the other thing is when you're having these conversations, go ahead and document them. And you're documenting the conversations, the boundaries, the accommodations, the things that you're thinking about. And it's not to protect yourself. It's so that you can all be on the same page as you go through this journey and it makes it easier for everyone. So when you come into this thinking of it collaboratively. Right. Right. And when you document it, write it down and send it back to every other conversation with so make sure that you're on the same page. Absolutely. So, you know, sharing it with everybody. Because you may miss you may miss understood something too. So best to find that out sooner rather than later. So from the very beginning, make sure when you're having the conversations that we're going to collaborate and we're going to share all the information together so that you're modeling it. Yes. And they're being transparent. transparency. You know, it's all how you put it together. You can look like you're protecting yourself or you can look like you're being transparent. I want to make sure I understood what and that I have it right. What we agree to. That's a great point. Check your time. Alright, so you want to go to tip to yes ma'am tip to is about building flexibility and we all know dementia caregiving. What do I even want to say? It's not there's no consistent pattern. And I would not say that's consistent. There's no it's consistently not consistent. Yes. And you know, unfortunately, your loved one is not going to follow your schedule the way you would like them to that is a very true. Because dementia is on its own timeframe in its own path. Yes. So obviously the more we can build in flexibility, the better off will be just some some facts from the Alzheimer's Association. 57% of dementia family caregivers report having to go in to work late, leave work early, take time out the time off or even reduce their hours. So, you know, it's going to happen 57% of the time. So, I mean, it is going to happen. It's a lot. Yes. So, and so what you want to do is just make sure that you back sort of back to God and with solutions is explore flexibility options in your organization. Does your organization allow remote working? Do they have allow flex hours? Or do they have even some people create shortened work weeks? So maybe you've got somebody who can help care get for your loved one, you know, four days a week, but you're going to be responsible for three days a week. So you can, you know, upload, you can front load your work week into a stacked week. So you have more work hours on certain days. And many companies have already implemented these kinds of arrangements. So explore. Because you may have them and you're not aware of them because you haven't needed them for any other very good reasons. So it's not that that companies don't already have that. This is why we're identifying. Raise your level of awareness to what already exists because if you haven't ever needed it, you may not have explored that they have it. Exactly. And then if you find an arrangement that you think is going to work and soon after giving this advice before with other things. So you need to propose it as a pilot solution because you need to try it and make sure it works before everybody gets all bought in that this is the way it is. So propose a pilot arrangement. Give it a shot. See how it works. Observing of just as you get through the process and see if you need to make changes to it. And when everybody's bought into this being a pilot, everybody's like, okay, well, let's figure this out. This is a project we're working on right now. Everybody can be part of the solution, which is what we really want. Yes. And it does. And same thing speaking to everybody. Once you've come up with an arrangement and it's either pilot or you think it's going to work. Discuss with your manager about whether or not they'd be okay with you talking to the rest of the team that you're on. And the reason being, sometimes those people can help you come up with even a better arrangement because they're willing to job share or to flex hours with you on different times or cover. They've been needing to make a change and haven't had an opportunity until now to do it. So it would be great if you could be open about it and have a team conversation and just see if there are other options that maybe you guys haven't even thought of. Or at least set expectations that this is how you're going to be working for at least the near future. I do have a lot of respect though that you said, you know, consider it because it's not necessarily something that is going to work in every company to have that kind of exposure. Right. Have that kind of open conversation. So you'll need to understand back to understand your company culture if that's a good way to do things. And then create backup plans because we know that there's going to be emergencies. That is the nature of dementia family caregiving. And so now that it's out in the open at a minimum with your manager and hopefully with your whole team, you can do a better job of having a backup plan in case something goes wrong. Right. Another idea in terms of building and flexibility is leveraging technology. So you probably already have collaboration tools. You know, COVID did that to most companies. You know, you probably already have remote working tools like zoom collaboration tools, Google drives, lots of different places where you can work with other people and not necessarily be in the same room. So leverage those also leverage technology platforms for doctors appointments. Not every doctor appointment requires you to get in the car, drive to the appointment, have the appointment and drive home. So a lot of telepresence these days, telehealth where you can actually go in and have a doctor appointment over a zoom meeting or something like that. So that would save a lot of time and disrupt your work day less if you did that. Right. And then there's also technology around care plans because part of being a family caregiver is all the people you have to update every time something happens. Right. Medication change or have that doctor appointment go or what do we need to do now. If you leverage a tech technology for care planning like Ella plan in episode 33. We actually talked to Amanda Luke off from Ella plan about how to create a care plan. You can do that manually in a binder, but one of the options that Ella plan provides is you can do that in an app. So you could have the doctor appointment update the app and then everyone knows that after the doctor appointment to go to the app to look and see what's happening. AARP also also has something called caregiving companion that seems very similar where you can people learn to expect their updates via a piece of technology and not you happen to call everybody. And then soon as this is my soapbox. It's a great soapbox. It's my soapbox. When I say building flexibility on tip two, I also mean your own flexibility with your career. So this isn't a permanent situation. Just think through for a minute. Maybe you're an outside sales person who has to be on the road a lot and that's no longer practical. Does that mean that you can't work at that company anymore? Well, you probably can't be an outside sales person anymore and travel if your loved one can't stay alone. But maybe you can leverage the opportunity to be an inside sales person might be the same job. But for now, it might accommodate what you need in terms of flexibility. So just think about your career options. It doesn't have to be a permanent change. But maybe you change the role your role for this season of of your work life. And to your point of earlier about making sure that you're raising the awareness early in the journey. When you raise the awareness early in the journey and say, Hey, you know, right now I'm an outside sales person. I'm on the road five days a week. I've got all these things. I'm not sure when this is going to change, but I believe that there will be a time. Let's talk about what this could look like. How could I be training someone else and doing some other things and so that it becomes almost transparent. So, you know, what are ways where we transition where we can be working together on this. Yeah, agree. From my experience, I started off. I moved to working from home when my husband really shouldn't be at home alone by himself, but he was actually okay to do most things by himself. I eventually had to become part move part to part time and then I eventually retired. But you know, that's really where we are in terms of understanding the flexibility in your role and what you might want to be doing. Nancy and I both strongly encourage you not to manage dementia care alone. Yes, we do. This leads us to tip three. Leveraging your resources. Find support. And we learn to find support out in the community outside work. There are a lot of support we can find at work. We can connect with fellow colleagues who are also caregivers. And one of the things that we can do to give us that the practical advice and some emotional support is. We can either look at they are, if they already have employee resource groups often known as an ERG that are specifically for caregivers and if they don't already have one. Create one and then you'll have another support mechanism and work with other caregivers in the in the organization. One of the other things that a lot of people have learned is that if somebody else is in a caregiving season and they've got some time. They'll help you and you can help them and you can swap. So there are a lot of benefits of that. And then almost every business has employee assistance programs. They're different for different companies. Explore what they are. We often don't explore them. I've talked to a number of HR leaders and they say, I don't think 10% of the employees know what our EAPs are. So explore what those are and they provide counseling. They provide a variety of different kinds of resources and support services. And if the company has already gotten some of these in place, but none of them are specific to what you want. They've already got the model for it. They've gone through all the processes. It may be very easy for you to have that included. Research resources in your community. Yeah. And this is outside of work, local respite programs. Another one. And let's share this one because this has been huge for us. Take things off your plate. Yeah. We think, you know, we have to do it all. Well. No, yeah. So in some cases it is look at things were hiring a paid caregiver even earlier in the journey to do some of the things that are some responsibilities would give you more capacity. That's a great thing. Something else is consider professional care management. And whether this is an individual who does this or their companies that have created solutions for this. One of those is called wealthy and organizations like Best Buy and Hilton and Salesforce have incorporated these because they will help make the appointments. They'll help navigate insurance. They'll help do some of these things that can often take so much of your time and they've got processes and people who do that to help you maintain your productivity. And those are things that will take things off of your plate. Yeah. Yeah. You know, so I am one of the guilty people. I never looked at what my EIP are in places program offered. So, you know, don't be like me. So I wish I had, you know, because that's a resource that I could have at least looked into. Well, we've learned from what we have and what we have done. Yes, we have. It's really valuable. And I've I've looked at employee assistance programs that other companies have had. And there are some really great even in small organizations. They've got some really good plans. So take a look at that. Anyway, how about tip four? Tip four. Tip four is to plan for the unplanned. Sadly, we know this is required when it comes to dementia. And that really where we're talking about this, we're thinking about how do we protect your finances? Because unfortunately, Sue and I both know caring for someone living with dementia is expensive. Expensive. And it's and it's and it's not predictable in terms of how you're going to spend the money. Each journey is different. It sure is. And so, you know, protecting your finances, understanding what your benefits package is, what insurance is going to pay for, what kind of paid leave you can take. Those are always you can protect your your finances. It's helpful to create a caregiving budget. Understand what you know you're going to spend money on and make sure you understand where that income is coming from. It doesn't always have to be you. There may be other family members who are willing to pitch in and your loved one may have long term care insurance or other things that that are on their income like so security if they don't take disability yet. So there's lots of ways to to understand where you can get income, but but you know, create a budget with where those things are coming from. If you've never been on a caregiving journey and you don't really know what that budget looks like, there are a lot of people who can help you. True. True. There are financial advisors that specifically focus on elder care as well. Another good example is export tax credits or really tax deductions. But caregiving for paid caregivers is a tax is one of those things that goes into medical expenses. So you talk to your tax advisor and understand make sure you understand what all your tax deductions can be. And build an emergency fund as best you possibly can early in the journey where it's not costing you as much because of that whole income disruption we already talked about. You know, I ended up eventually going part time. You may have to take a different role that doesn't pay as much. You know, you want to you may have to leave. You may have to you may have to become a full time caregiver. So as much of that as you can plan for ahead of time and say for ahead of time is really important. And I know you did that soon. I did. There came the time when it was the right the wisest choice the right thing to do for me to step away from my professional career. But you planned for it in terms of you put money away specifically to help. I had I had already planned for it. I had also shifted our finances to be more conservative. And that was what we needed to do at the time. I think that's what was the wisest choice. So let's summarize in this episode. We talked about strategies to help you thrive at both work and at home. We shared four tips. Tip one self identify and have a strategic plan on how to do that. Number two, build in flexibility. Don't be caught up in the way things are. Think about all the different options you could possibly have. Three, leverage your resources. Understand what's all around you that you can take advantage of to help. Don't feel like you have to do it all yourself. And four, plan for the unplanned and protect your finances. Now, if you have tips for working caregivers, please share those on our Facebook page or Instagram page. The links are in the show notes. Just like all of our podcast, you can go out to the caregivers journey.org. Find this podcast number. There's a matching blog with the exact same number. We've effectively taken notes for you. Yep. If you like this podcast, please share it with others. Please subscribe to it. Follow it. We really, really appreciate it because we're all on this journey together.
