Transcript for Episode 7
Mindy: Welcome to The Shape of Care. A podcast that explores the world of caregiving. I’m your host and the creator of this podcast, Mindy Fried. In this series, we look at who does the caregiving in the U.S. and why this work is so important. At the end of each episode, I asked you to call or email us. We wanted to hear your questions about caregiving; your stories about the challenges you face, or the lessons you’ve learned in navigating the care system.
Today, I’m thrilled to welcome Karen Wasserman. Karen is a Licensed Social Worker and over 20 years ago, she founded Your Elder Experts. It’s one of Greater Boston’s leading Care Management Practices. Karen and I will address the questions and comments that you sent to us. It was great to see the kinds of concerns you have. And we’ve done our best to select the ones we felt were the most universal, in terms of caregivers’ experiences and concerns. I’ll share a couple of quick responses first and then we’ll ask Karen for her expert advice.
One person asked me where she could find resources that I referred to in each episode. They’re on our website: www.theshapeofcareorg. Each episode has a page with caregiving resources and articles, a relevant blog post and more information about our guests.
A few people wrote to say that they’d like to be a guest on the show. They want to talk about their work or a book that they wrote. So here’s what I’d say. Feel free to contact us if you’re interested in being a guest in our next season. There are no guarantees. First of all, we need to raise the funds to do a next season. And secondly, we need to see if your story matches our focus.
And finally, one listener said that they were caring for a spouse and they found a small national group that has been very helpful to them. It’s called Wellspouse.. Now, let’s talk to Karen!
Karen, I’m so happy you could join us today. So let’s get right to it. I’m going to start with a question from someone who signed their note “Reaching My Limit”. So here’s what they said. “I’ve been taking care of my mother for two years and I’m totally burned out. She’s 93 and she insists on living in her home alone. The other day, she fell. Luckily, she was okay, but I’m worried. Do you have any suggestions for the kind of support I can find for her?” She added a second question. She said, “Do you have any idea where I can find a group of caregivers for support? I need some help”. So here you go. ‘Reaching my limit’. What do you say, Karen?
Karen: Reaching my limit – you are in good company. Sadly, there are so many people out there struggling as caregivers to provide the care that they would want to give. Their parents and their parents are not interested in accepting it right now. For lots of different reasons. But sometimes you have to accept the fact that people are going to do what they want. They might make bad decisions and you might have to just wait until that moment when there’s a crisis that allows you to jump in, and try and make things safer for your parents.
And there are caregiver support groups everywhere. They’re based in hospitals, in senior centers, town Councils on Aging, and human service agencies in the area. Caregiver support groups are everywhere. Even if you were to Google them, you would find them in your neighborhood.
Mindy: So, Karen, how does she know that a particular caregiver support group is the right one for her? Because what I know is that there are some for people who are caring for somebody with Alzheimer’s or for Parkinson’s disease. So how does she figure that bit out?
Karen: There’s usually a leader’s name and contact information. It’s always a good idea to call and speak to that person and make sure it’s going to be a good fit, because if you’re frustrated and stressed out, you don’t want to get yourself to one of these support groups and find out it’s not the right one for you.
Mindy: Do they cost money or are these caregiver support groups free? What do you think about that?
Karen: Most support groups are free.
Mindy: What about somebody who wants to kind of shop around? Do you have to commit for a certain period of time? And maybe there are huge variations across the country.
Karen: There is a variety. There are support groups where you are making a commitment for a series of group meetings. And there are lots of them that are also drop ins. You know, sometimes adult children can arm themselves with knowledge. Even if your parent is not in a place where you can convince him to accept help, at least you can learn about what there is out there that could be helpful when they change their mind. Or when the situation changes and they are more open. Or maybe sometimes it’s finding the right person to discuss it with them. But knowing what the resources are can make a huge difference, when that opportunity arises.
Mindy: What that reminds me of is when my father was about 95 or so. My sister and I were living in different cities. He was in Buffalo and we were in Boston and Pittsburgh. And we started thinking that it might be time for him to move into a facility or at least to check it out. So we started looking at different places and then we started bringing him around to different places. Oh, my God. Anyway, I mean, we went to one place we thought was amazing and we walked out and he said, “I feel like I could jump off a cliff and that would be the same as living here.” So that was not the right match. And the one that we eventually moved him into, we had visited three times. Initially we went on our own just to see what the place looked like. And I was pretty negative about it. I went again another time with my sister and I started seeing some benefits – and then he had a serious fall which precipitated him moving into the place. And I mean, oddly enough, there were a couple of things that were threads that transitioned him there. One happened to be a guy who was like a handy man who worked at his house when he was living alone. And that guy had a full-time job in this institution. We had no idea. So I feel like there really is some advance work sometimes that you can do in checking out different resources before somebody you love is willing or interested in pursuing the situation.
Karen: When someone’s in need of moving to an assisted living facility or a retirement community, it’s usually because they’re having a decline in their own ability in the safety of being independently living in their own home. Whatever the reason is, that they now need help. It can be overwhelming. Just the idea of moving, let alone going and touring all these places. So when I meet with adult children and they want to do some planning or they’re about to embark on a search for a new home or community, they want to take their parents with them. But it’s exhausting for people. So what I do is I say, okay, this is, the these are the places I think will meet their needs. You should go first because it’s exhausting and tiring and it will be overwhelming. Choose the places that you think feel like a good match, choose two. And then if it makes sense, bring them to those two. And from there, a decision could be made. But it doesn’t have to be so overwhelming and the legwork should be done probably without them.
Mindy: That sounds like good advice. Another note we received was from a woman who called herself “Frustrated from New Jersey.” She said, “My mother’s caring for my dad, who has advanced stage pancreatic cancer. I keep telling her I’d like to help, but she doesn’t want to burden me. He’s my dad, though, and I want to be involved. Do you have any suggestions?” What do you think about that, Karen?
Karen: I think there are many couples that have this sense that they have to be the only person to do for their spouse that’s ill, and that they don’t want to burden their adult children and they’d like them to go on with life as usual. But for adult children, that’s not the way it feels. It can be extremely important to be a participant in caregiving for your parent. And even if you’re being rebuffed by your parent, it’s important to keep reminding them that you’re there for them, to offer at least a continuous stream of support. Calling, maybe planning a trip. Making sure that they know that you’re there for them, even if they’re rejecting it at first. I think it’s important to know that they have support from their family.
Mindy: Right. So you let them know, but you’re not really pushing yourself into the situation.
Karen: Yes. I think it’s important that you let them know that you’re there. You respect their wishes to do things the way that they’re happening, and you continuously let them know that you care about them. You want to be able to assist them and you’ll be there when they need you.
Mindy: Yeah, that makes sense. A third question that I want to pose to you, Karen: “Where do you suggest I begin to find a caregiver for my elderly grandmother?” This is a question that we got from Susan in Arizona. ‘She took care of me for most of my childhood. I’m 34 now and she’s 85. She used to be very independent, but she’s having difficulty cooking for herself. And I’m pretty sure she’s not taking many showers. I visit her in her apartment every day. I shop for her. I bring her meals. But I think she needs some professional help, even though she says she’s fine.”
Karen: I feel like there are a few issues going on here. One is that the granddaughter, Susan, is doing as much as she can. And it’s also important to realize that her grandmother needs more than that. So bringing in people from the community to evaluate and assess to help determine what kind of care she needs is a good idea. There are outreach people at Senior Centers and Counsels on Aging. There are private Aging Life Care Managers. There are people in the community who can help support figuring out what her grandmother needs.
And then there are a couple of ways of finding good caregivers. People usually go in two directions: There’s going through a private home care agency where you bring in an agency that helps you figure out what kind of care you need. And then they vet the caregivers. They, you know, do a whole background check and train the caregiver. And then they are there to supervise and to fill in when there are issues, when the caregivers are unable to be there. They have the ability to bring in another caregiver. The other way to do it is to go completely privately. And you find people through networking, through friends. Sometimes if you meet someone in a community when you’re there for rehab, you might find a good caregiver and go to them to find out if they’re available. There are lots of ways of networking to find a private caregiver. The only issue with that is that you don’t necessarily have the vetting process or the supervision. It is less expensive to go privately than to go through an agency. If someone is particularly low-income, there are often state- subsidized services that exist and it’s worth going that route if paying privately is unaffordable.
Mindy: So, Karen, I know that in Massachusetts there are 27 one stop shop agencies that coordinate care and provide home care to frail elders. Can you just describe what that is? And is that a model that exists around the country?
Karen: I think most states have Area Agencies on Aging that provide some level of subsidized home care services. Every state is different in terms of the amount of care that’s available and the type of care. In Massachusetts, there is a an opportunity for you to have homecare services, personal care services, as well as there’s money for adult day programs and there’s a nurse who assesses what your needs are. There are caseworkers that manage and monitor your care.
Mindy: Is that for people who are low income or is that something that people can get across the board regardless of your income?
Karen: Traditionally, it’s a low income person who would be a good match for a state subsidized home care. But the home care agencies are branching out and they are now providing some private pay services to help fill in with the services that they don’t provide.
Mindy: Would health insurance pay for that? And I’m not talking about long term care insurance. Like would my insurance policy from Harvard Health pay for home care services?
Karen: It would pay for very little home care services. An HMO usually would pay for services for a short period of time after an acute illness or surgery. Most older adults do not have their home care services paid for by insurance unless you have Medicaid. Medicaid services provide an additional array of home care options and depending on what your need is and whether or not it’s safe to be getting those needs taken care of at home, Mass Health Medicaid will actually pay for that.
Karen: But just want to distinguish between Medicaid and Medicare because Medicaid has an income eligibility factor. Right? So Medicare is something that is universally available to people once they turn 65. So you’re saying that Medicaid will pay for home care services. So I guess, you know, it sort of goes back to… I’m thinking about Ai-jen Poo and Sarita Gupta in episode 2, who talked about how people who have a lot of money can pay for services. People who are low income have access to an array of services if they can figure out how to navigate the system. And then there’s a lot of us who are kind of in-between who are in a tight situation, where they’re really kind of stuck. And that’s where policy really needs to kick in.
Karen: There are very few resources for people in the middle. It is true the people who are lower income have an array of home care services that will enable them to stay at home longer. People with money can choose wherever they want to be.
Mindy: This one is from somebody who calls themselves Anonymous. “I live in Los Angeles and my father lives in Omaha. He’s 82 years old and very frail. My sister lives near him and feels like I’m not doing enough to help him. And she always seems annoyed with me. I worked full time and I have three children. So it’s not easy for me to just fly there and take care of him the way she does. Besides which, he and I never really got along. He had a terrible temper and I still resent him tremendously. But I feel bad that I haven’t done more to support my sister. Do you have any suggestions?”
Karen: I think family dynamics make every situation more complicated. So there’s the fact that there is a difference of experience in terms of how they feel, close or not, with their father. And it’s also obviously more difficult for the person who’s living at a greater distance to be involved on a daily basis. I’m sure the sister who lives locally does feel like they’re doing more because they’re right there. However, what I try to do when I meet with siblings is to really talk about what needs to be done. What would one be able to do versus the other? What could the daughter living in California do that would be useful? She’s further away. Would it be helpful if there were planned visits? How many would be necessary? Could she be providing respite for her sister so her sister wouldn’t feel like she was stuck and couldn’t ever go away or have a break?
So there are lots of ways of dividing and conquering. Sometimes it’s the person who lives further away who takes on the finances because everything is done on the computer these days. You don’t have to be there to pay the bills or to monitor what’s going on financially. Families that work really well together are the ones that are able to communicate about what their needs are, who’s going to do what. They divide and conquer. They know that sort of instinctually. But the families that don’t communicate as well have a harder time getting to that point. But there’s always some way to be able to share the burden in a realistic way.
Mindy: Yeah, I remember one time somebody who was an elder care manager said to me that the dynamic of the family is still the same as people get older. And so if it was a difficult relationship over the years, it can continue to be that, or if it was a great relationship, it can continue to be that. And some families are not that great about talking about things. So, I would hope that people can learn new skills and maybe get some help in talking about through these issues. But I’ve also seen that the complexity of sibling dynamics is really sometimes challenging.
Karen: I, however, believe that most families, even when they’re siblings that don’t get along, don’t see the situation the same, have years of angst with one another – that when you are able to say “what’s the goal here? Is the goal here to care for your parent and what are your parents needs and how can we do that?” I feel like that brings people together.
Mindy: That seems like a really wise insight. I’m just going to try and fit in one last question. What should people be looking for in a home care worker? And this is a question that came up a number of times.
Karen: Some people are natural caregivers. There are people who don’t necessarily have a ton of training, but intuitively understand what needs to happen. I feel like Tutu, when you spoke with her, she gave such a great sense of who she is as a caregiver and how she became such a great caregiver. And I think that when you meet people, you want to get an idea of what they’ve done before, what kind of work they’ve done, who they worked with. It would be really helpful to have some sense from somebody else who they worked for to get a reference. I think that it’s about how comfortable they make you feel and whether or not there’s someone who’s going to be dedicated, who’s going to be able to communicate, who wants to communicate back with you. There’s a give and take in hiring a caregiver. It’s like interviewing anybody else. But you’re more interviewing someone who actually is going to be part of your family. And so you want to make sure that you’re comfortable with them and that they feel comfortable working with you. It is a very personal relationship and it shouldn’t be something that you feel as though you can’t ask them. There shouldn’t be anything you feel like you have to tolerate. If it makes you uncomfortable.
Mindy: So, Karen, you’ve been referring to what you tell people and so on. So can we just kind of backup. Can you talk about a little bit about the kind of work that you do with Your Elder Experts? What is the role that you play with families and with people who need help?
Karen: So our title is Aging Life Care Managers. We come from different backgrounds, but we’ve all worked with people and their families and we understand the resources in a community. We can help evaluate and assess what people’s needs are. Connect them to the resources. Sometimes we just have consultations with people. We give them a roadmap for what’s going to lie ahead and what. Resources are available. Other people we work with over time, we help manage and monitor the care that they need. We are the eyes and ears for a long-distance caregiver. We become a team member with a family member or we’re working with a client who actually doesn’t have family and they need us to step in like a family would. Going to medical appointments, helping develop a care plan, meetings, making sure that a transition happens correctly from home to an assisted living, or maybe to a nursing home when there’s a couple and one of them needs to go to a nursing home. It’s helpful to have someone who’s going to go through the process with them, not to have to go to a nursing home all by themselves. These are really emotional transitions and an Aging Life Care Manager is someone who is knowledgeable and compassionate and able to help be with someone through the transitions and from a professional perspective, know when things are working well, when they’re not, and provide guidance.
Mindy: So if I if I’m low income and I can’t afford your services, let’s say I’m I have access to Medicaid, will that cover the costs of services from you guys?
Karen: The truth is that Aging Life Care Managers are expensive. However, many people can afford a consultation. And a consultation is really an hour of our time where we help people come up with the map of the care that they need. And sometimes that’s all an older adult or their family needs to go forward. That said, there are lots of resources in communities, whether it’s the local senior center Council on Aging. Each town usually has an outreach person who is skilled and knowledgeable about the resources for older adults in their community.
Mindy: Yeah, I mean, I have had conversations with a number of people who weren’t even aware of a resource that was around the corner from them and I just happened to have that conversation. So I think it’s really helpful for people to know that, you know, there are public agencies that can provide that kind of information.
Mindy: I think it’s always good to reach out to other people. Sometimes when you have an older adult in crisis, you feel like you just need to take care of it. But the truth is, the more you share with people, you know, the more they can share about the resources that they have found. You don’t always have to recreate the wheel.
Mindy: That’s a great segway to talking about what The Shape of Care is about, which is creating a platform for a caregiving conversation. So many people around this country are doing this sort of work and are very isolated. Actually, 17 percent of the adult population is caring for somebody 50 or older, and that number goes up to 30 percent of the adult population, if you take into account folks who are caring for somebody with a disability or with an illness. So, you know, we really encourage people to talk to friends and colleagues and other folks to find out about their experiences.
So, Karen, I just want to thank you for joining us today. I really am grateful that you could share your expertise. And if people you have any more questions, please contact us.
You can discover more about the series. You can connect with us on Facebook, Twitter and Instagram at The Shape of Care. If you want to find out more about the people we’ve interviewed, read their guest bios, read The Shape of Care blog, and see lots of caregiving resources, just check out our website, which is www.theshapeofcare.org.
This is our last episode for Season 1. This project has been a labor of love with the support of friends and family. We plan to continue, but that depends on our capacity for future funding, including support from you! If you like what you’re hearing, please support the shape of care financially at theshapeofcare.org.
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The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Helen Barrington is our Executive Producer. Our Mix Engineer is James Donahue and our Assistant Producer is Alex Birch. Special thanks to Podcast Advisor, Lisa Mullins. Sarah Wasco created our logo. Kate Krosschell developed our marketing plan, and Maggie Taylor is our marketing consultant. Our theme music is Breakout, written by Josh Rosen. He performs his composition on piano with Stan Strickland on sax and percussion. I’m your host and the co producer of this podcast, Mindy Fried.