Amy Goyer, author of “Juggling Life, Work and Caregiving” and is a nationally known writer, speaker and consultant specializing in caregiving and family issues. Amy serves as AARP’s national family and caregiving expert, columnist, and spokesperson, and moderates AARP’s Facebook Family Caregivers Discussion Group. Her columns and caregiving YouTube series share her personal caregiving journey as well as practical, actionable tips for caregivers.
Amy is often quoted, and a recognized media authority and frequent guest on NBC’s Today show with 35 years of experience in the field of aging, she began her career as a music therapist. She is also a Certified Aging in Place Specialist. Amy’s work is the perfect fusion of her professional and personal experience.
Amy is a passionate champion for family caregivers and has been one her entire adult life, caring for her grandparents, parents, sisters and other family members and friends. Learn more about AARP resources for family caregivers at https://www.aarp.org/caregiving/. Connect with Amy at http://www.amygoyer.com/ and https://blog.aarp.org/author/amy-goyer and in Facebook, Twitter, Youtube, Instagram, Pinterest and LinkedIn.
- How Amy’s current work is the perfect fusion of her personal caregiving experience and professional experience
- Caregiving during the holidays in the middle of a pandemic
- Mental health issues for caregivers
- AARP Facebook Group and other resources for caregivers
More of Amy’s Links:
AARP Blogs: https://blog.aarp.org/author/amy-goyer
Company Website: https://www.aarp.org/caregiving/experts/info-2019/amy-goyer.html
Today’s guest is Amy Goyer. She is an author speaker, a consultant who specializes in caregiving and family issues, as AARP’s National Family and Caregiving Expert, a frequent guest on the Today Show and a certified “Aging In Place” specialist. So Amy certainly has, uh cast a wide net in her career. So I’m really excited to talk to her; her journey and, and Amy Thank you so much for being here today and Boomer Living.
Thank you. Thanks for inviting me to join you.
I know that you are a music therapist which is very different from what you’re doing right now. So can you walk us through your career path and how you, I guess, get to this point?
I did. I started my career. I have a degree in music therapy and I started out working in adult daycare centers and nursing homes in Columbus, Ohio. I grew up in Ohio. And went to Ohio university. And as I began working in the field, eventually one thing leads to another. I got a little bit more into the administrative side of things. And then I worked for the Ohio department of aging as a field representative and got really involved in intergenerational work, which I had done hands-on in the adult daycare settings. but I started doing more statewide training, helping others create programs. Americans act programs and a And monitoring the older variety of things for the state. And then I went to a RP and I was intergenerational coordinator there. I was older adult learning liaison. I was adult daycare and a variety of different things for AARP. And I eventually ended up the grandparenting program, which had a a big focus on. Grandparent caregivers, grandparents who are raising their grandchildren or people raising nieces and nephews, et cetera. what I did was about 11 years ago, I quit my job so that I could care for my own parents. And I moved to Arizona from Washington DC area. And began really doing a lot more work around helping people understand caregiving. I say it’s a perfect fusion of my personal and my professional life because all of these years during that time, I was caring for my grandparents. First, my grandmother had Alzheimer’s. My parents had moved to Arizona and I was in Ohio. My grandparents were in Indiana. My dad was an only child. And so my sisters and I, who I lived close by six hours away, but closer than he did, and my sisters were all over the country. So I played a big role in driving over there. A lot, checking getting them services and supports, signing them up for meals on wheels and making sure my grandfather learned how to care for my grandmother. And eventually he needed care too. And and then my mom had a stroke when she was only 63 years old. So my dad became her primary caregiver again, and then my sisters and I did a lot of supplemental work. I went immediately when my mom had the stroke and helped get her into a good rehab program, because again, I was working in the field and I knew a lot about those things. And eventually my sister also became ill with Cushing disease and I was her primary caregiver. And then of course my dad developed Alzheimer’s disease. So when I moved across the country, my mom was dealing with increasing health problems and she had lived 25 years without with the stroke damage, but she was having more complications and other things, and my dad’s dementia was increasing. So at one point I was caring for my sister in Maryland and both my parents in Arizona and traveling back and forth to DC because. AARP put me on contract. Then I became an independent consultant and work with a number of clients, but continue to do a lot of work with AARP and really, um the, my heart is in it because I get to help other family caregivers benefit all of my experience. I understand the local services for older adults, understand the aging network and, the various supports and services that caregivers need.
Wow. Well, they’re blessed to have you,
when I was caring for my dad, he passed away two years ago. And when I was caring for him, he lived with me for six years and every day. All day, we used music because music is wonderful tool with people who have dementia and it literally helped get them out of bed in the morning, helped him wake up, helped him calm down. got him to exercise everything. we literally sang or listen to music all day long.
Wow. the AARP very lucky to have you because you carried some real life situations and heavy responsibilities that you can speak firsthand. So that’s great. now, how are you able to juggle all these roles and responsibilities over the past? It sounds like 10 plus years.
Yes. Yeah. I mean I, and I’ve been a family caregiver, my entire adult life, but the last dozen years or so have been incredibly intense. And since my dad died the last two years, I’m going through this post caregiving phase. Now my mom passed away in 2013. My sister passed away in 2014 and then my dad in 2018. So It’s been a big transition for me because it has been such a huge part of my life. And it is so much a part of my professional life as well. I learned a lot of lessons while I was caregiving. my boyfriend, the whole time was in Baltimore, so we’ve had a long distance relationship too. So we all have complicated lives when we’re. Caregiving. one of the biggest lessons I learned was I had to take care of myself in certain ways, or I was unable to take care of everyone else. And I looked at it as I compare myself with my car. I can’t run on empty and neither can I. And so I started looking at ways to fill my tank, whether it was quick little things, get him a good cup of coffee or more premium Philips. Time away from caregiving where my tune-ups and then routine maintenance was my sleep and eating well and exercising and, you know, to the best of my ability I do those things and I kept coming back to that. You know, when I start to get burnt out, I’d say, Oh, I’ve got to do something to fill my tank more. And so I really urge caregivers to do that.
Very much important during this time, particularly right. To take care of yourself, your own mental health and do overall wellbeing because you really can’t give something. If you don’t have.
Exactly. Yes. And, and, you know, the pandemic has only made it more complicated.
Absolutely. So you obviously have a passion for serving older adults, and I’m sure this passion is a big motivator for you. So do you think that you could juggle all these roles if you weren’t, if it were in something that you’re so passionate about?
Oh, that’s such a good question. You know , um, I do think that. This is, it is a mission, a passion for me, I think from the time I was young I felt compelled to look out for others and especially for older adults, but. I think, it’s amazing what we do when we, I have to, I think we all sometimes rise to the occasion. when we think I could never do this, I’ve done things I never thought I could do. And I’ve done a lot of complex medical and nursing tasks, which many caregivers do. and I think it’s just, you do what you have to do when you have to do it. And. many caregivers did not have a good relationship with their loved ones that they’re caring for. they may have had a terrible relationship with them, but they are choosing to step up to the plate. And I always went back to that. You know, what motivated me was love for my family, whether it’s responsibility or duty or whatever your motivation is, people are choosing to step up there. And I think that’s empowering. I don’t see any benefit in feeling like a victim and it doesn’t help me. It doesn’t help the people I’m caring for. it just makes it harder. So I think that’s one of the reasons why once we make that choice we somehow find a way to get through these hard times.
Wow. I love your attitude and I hope. We believe that aging getting older, it’s all part of life and biology’s biology. So as our health decline, there’s still a lot of living to take place. So let’s focus on the living part as much as our health might be declining over time. so I think. I think we all as humanity need to embrace that journey of aging and what an honor , uh, and what a blessing it is, right? Because part of aging comes, wisdom comes relationship in, comes with all the stories that you can pass on to your loved ones, and to your neighbors. So I think ageism is alive. but I think we all can combat that, then be a part of that shift.
Yes. And I think that one of our roles as a caregiver is not just managing healthcare, finances. It’s also quality of life. And as you say, there’s a lot of life to be lived. and I feel really good about that with my mom, for example, right up until the week she died, she was getting her nails done once a week and getting her hair done once a week. And I made sure she had those things. My dad got them. Right up until the last week he passed away. I had someone come to the house eventually, and those are those quality moments. And obviously being with people that we care about or connecting with them on the phone or other ways of connecting those are. Quality of life moments. Having my dad had a wonderful dog who was his service dog who gave so much quality to his life. I think those things are so important and such a part of our role as caregivers to make sure that our loved ones have access to those things.
That’s right. I know that while you’re. I’m an expert in caregiving. You’ve also been a caregiver yourself. So can you talk to how your current work is almost a perfect fusion of personal caregiving experience and a professional experience?
I’ve. Been a caregiver in many different roles across my life. And I think that’s an important point is that caregiving is across the spectrum. And you may be just checking on in, on someone periodically. like with my other grandmother, I was the respite person. I would drive over to Indianapolis from Columbus, Ohio, and I would take her to the grocery store and church, but my cousins and my aunt and uncle were. Mostly doing that when I wasn’t there, I was gave them a break. And that was a role for me with my parents was. Very much on the other end of the spectrum, where I cared for their every personal need and bathing, toileting, eating, everything and managing the finances and all of that. So there’s a lot in between that spectrum. So I think it’s important for people to identify the fact that they are a caregiver, because it helps us reach out and get supports and things that are available to us. So for me, having that wide range of roles as a caregiver helps. I really empathize and connect with caregivers now because I’ve played so many of those roles and no two journeys are exactly alike, but we can all have similar experiences. My perc my professional life, as I said, I’ve worked at the local level and the state level and the national level and understanding that an aging network and services that are available and and the need for caregiver support. So that’s where I think, my work now is just, it really is a perfect fusion of my personal experience and my professional experience.
Wow. Wow. I love your story. I look your, yeah. Impact. and I believe that we all eventually will become caregivers. All of us.
in one way or another, either way we’re going to be a caregiver. We’ve been one in the past. We’ll be one in the future we are when now, or we’ll be the recipient of care. You know we’re, it’s all a part of that circle. I’ve had so many different caregiving experiences and I’m sure I have more to come in my life. And I think that’s why this is an issue that affects every human being.
I agree with that. So in your life, you’ve been a caregiver for your grandparents and parents and your sister. So how is the dynamic of caregiving different across these three groups of family members?
Oh, that’s an interesting question. Yes. I do think that our relationship with the person that we’re caring for is makes the experience different. And part of it is your role and the responsibilities that you have. For example, I just spent several weeks helping a neighbor. Um my neighbor passed away and her sister came from California to take care of. Entering her house and everything. And I found myself in a caregiving role because her sister became ill and went in the hospital and she was completely unequipped to manage, emptying a house that was very full of things. And a lot of things that hadn’t been done and, 25, 35 years in that house. so my role in that situation was to, make sure she had a safe place to get her a bed set up. I got her medications for her. I had never met her before those two weeks, but I found myself in that role and I helped empty the house, go through things, everything. And then my role is pretty much over. I’m still helping her with some of the follow-up cause she went back to California and then my role ends. Whereas with a family member, it tends to be a longer term. role and connection. And I think that type of experience is different. even the difference between caring for my sister and caring for my parents. my sister was while I was her power of attorney, she. Was much more with it, unable to make decisions for herself and and get get some supports in place. But there were times when she was so ill, she just could not do that. And when she had a hard time driving, she lived a couple hours from my DC home and I would. Go over and try and help her do some things and just check in on her frequently. I didn’t have the responsibility of setting up every single service that she had and helping her with every detail. I wish I could have done more really for her, but I was so deeply involved in caring for my parents, whereas for them, my feeling as a daughter was a much deeper responsibility and a longer term commitment as well. my boyfriend’s mother is older now and. I guess you could say in a sense, I’m a caregiver, cause he’s a caregiver and I help him. And she’s very independent and, but she probably wouldn’t be in her home if he wasn’t helping, you know, take care of it. you know, I go and I help with yard work and things like that. That’s a caregiving role. but most people wouldn’t recognize that as a caregiving role because of what I do. I see it more that way. but it’s just a, it’s a minor caregiving role in that sense. So the relationship does somewhat dictate your role as a caregiver.
Absolutely. So now while caregivers provide an essential service for their loved one, the work can take a toll on them. So what are some of the mental health issues that care givers experience?
Well, you know, caregivers have a lot of pressure. I think one of the hardest things is the fact that we are in a position to advocate for our loved ones. And so we feel a sense of. Responsibility to make sure they get the right medications and they’re not getting, having medication side effects and are they getting the best treatments and the best care and what’s right for them and are they safe? That’s a lot of pressure. And the more intense that responsibility is, the more you feel that sense of their life is dependent on me in some ways. And that’s. That is intense. at the same time we have other things that come on and make it even harder. So for example, now the pandemic has made people more isolated. Many caregivers can’t see their loved ones. They may live in a facility that is not allowing visitors or limited, very limited visitation. And they have loved one to live in their own homes, but they’re staying away just to try to stay safe and reduce their exposure to the virus. And and it may be that you’re living with someone that you’re caring for and you’re not going anywhere because you don’t want to expose them. And so you’re even more isolated at home with them, which many caregivers who are caring at home have stopped getting outside surfaces because they want to protect their loved ones. So they’re not getting as much support. So it these other things have really. Affected how the caregiving experience AARP just recently did a survey to find out how the pandemic is affecting people and how they’re feeling about the holidays coming up. And it’s interesting. 44% of the caregivers surveyed felt negative effects on their mental health because of the pandemic and slightly more of the care recipient felt that way as well. So I think it was 60% of. People who responded to the survey said they felt like their mental health was fair or poor. That’s not great. So we need to really be aware of that. That’s a red flag that there’s more support, needed, more connections, less isolation.
I agree. in the beginning I was worried about my mom who is in the latest stage of dementia.
then as time progressed, I was worried about the school aged kids, because during that window, school, age, high school, middle school that’s a time when they grow through those experiences of being
yeah, the socialization.
And. So I worry about the school aged kids, And then honestly now, even as adults, mine and perhaps your mental health pretty shaky at times, Because we’re not meant to be locked down. We’re meant to have that socialization that one-on-one don’t get me wrong. Technology is great. It’s allow you and I to have this conversation.
But we’re just meant to, to hug and we meant to shake each other’s hands and, face to face. So I just hope that as time progress I’m in Michigan. So we’re still in a heavy lockdown. Uh I’m hopeful that as time progress, January, February, safety first, but that will ease back into a new life and adapt in some form of normalcy just for the sake of everybody older
children, you and I.
It’s so hard because there’s no perfect answer. we have , uh, people in nursing facilities who are not doing well because their families were coming every day and, or very frequently to help care for them to visit them, to be their anchor, and be their connection. And then that lack of interaction, and many of them are going downhill rapidly because of the lack of that. And so we’re really trying to help find ways to make those connections. AARP has done a lot of work on advocating for those who are living in nursing homes. And as so many have passed away because of the pandemic and at AARP.org/nursinghomes, you can find more information there, but just being creative about ways to make those connections, whether it’s window visits or outdoor visits, or, the different ways that various facilities have come up with to make it safe, without exposing people to the virus that they cannot fight, that are, they’re not well-equipped to deal with because of their health conditions.
Very true. So going into the holiday and during the pandemic, caregiving is going to look. Very different and more difficult this year. Do you have any tips for people caring for a loved one in this difficult time, whether it’s at home aging in place, whether it’s at a community skilled nursing, do you have any suggestions?
Right. You know, about three quarters of people in the recent AARP survey of the caregivers felt that there is at least some ex risk of exposure. If they visit with a loved one over the holidays. And, you know, many are planning to do so most will do that with some changes, they’ll be wearing masks. They’ll keep a distance. Many are going to have much smaller gatherings and not the 25, 35 people all gathered together, but a very small gathering trying to avoid physical contact. So the first thing is to look at how you can maximize safety and find the best ways to connect with your loved ones without putting their health and safety or your own health and safety. the lot of people are going to travel, but it’s really only about a third of caregivers who are going to travel. And if they are, they’re really trying to. To again, look at the safety factors. Many will drive instead of flying because they feel that will be safer. some will quarantine around the holidays. You, they won’t go anywhere for two weeks before they see their loved ones, because it’s worth it to them to be able to see them. And then afterwards, again, if they’re traveling or they’re been around more exposure, then they’ll quarantine app. Words, they’ll just do that on their own. So look at the different kinds of safety protocols that you can find and maximize that as much as possible. Han you know what I, I tell people is try to avoid that all or nothing. viewpoint. It’s not that we cancel the holidays or we go full blast. There’s some in-between here. And I think it’s important to acknowledge that it’s different this year. It is different and not to try to gloss over that. And if people feel sad about that or angry or resentful or depressed or whatever, Get it out there, talk about it and say, this just really is not the way I want the holidays to be my sisters and I, as I said, are separated from around the country. My sister is ill in Arizona and I am not able to get there. And it’s been really hard because again, that caregiving role for me is different with her than my other sister or with my parents. But. She needs support, so we’ve had used tech, as you said, we wouldn’t be talking if it weren’t for technology, Find ways to adapt your traditions. And it may be using technology. It may be having an outdoor gathering with the fire pit. it may be finding ways to do window visits. if your loved ones are living in a facility, ask if you can decorate their windows. Or decorate, put things outside their windows. you might, put a temporary Christmas tree outside their window and then promise that you’ll clean it up after the holidays. You know, facilities, I think are being very creative. If they’re, if you’re living in a senior community right now, they understand. The mental health needs of their residents, and they’re trying their best to do things and be safe at the same time. So find ways to do that. I know one caregiver that I know who’s in the AARP family caregivers discussion group on Facebook that I moderate, she said she got a bunch of Christmas cards and she addressed them to her brother. Who lives in a memory care facility. And she signed them from different family members and different people, and then gave them to the facility and they are giving some to him every day. So that every day he’s getting something, a connection, a reminder that this is the holiday season. I connection with the outside world. He’s taping them up around his room. that’s what I thought that was really creative. She also was going to get some friends and go caroling outside his window and that’ll bring him some Christmas joy. So find ways to adapt that. I don’t know. What are some of your favorite holiday activities?
I love it. I love what you said. Be creative make, do with what you have, but be creative and it’s not all or nothing.
find some humor in this mess. If you can write it and it is a
Yes. my sisters and I, one of the things we do is we watch, um our family has a tradition of watching holiday movies, Christmas movies new year’s movies, you know, and any holiday and. So we get on the phone together, we do a video call. Um we use FaceTime, you can use zoom, you can use Skype, any kind of platform. And then we viewed our phones and we S we all have the movie cued up and on our individual TVs. And we hit play at the same time, and we watched the movies together and we can unmute and make comments and laugh, or, whatever.
like an E party. And we do this, we’ve been doing we’ve, we’re scheduled do this three times a week until Christmas. And we’re enjoying it. We laugh, we cry, we enjoy those things and we have a tradition of wearing Christmas headgear in our family. And so really any holiday had gear. And so we were. Are different head gear like lights or antlers or whatever, while we’re watching the movies together because you’re right. You got to have a sense of humor on some level and find ways to enjoy it. The other thing we’re going to do is Christmas crafts together. We’re each going to take the same little craft, a packet of things that I’m sending them and we’ll get on video and we’ll make them together at the same time, even though we’re not in the same room. We can still do it and show ours and laugh at them, et cetera. You can do that with baking or you could bake things and send them to your loved ones. You can find with help with decorating, again, you can decorate outside for someone and not have to come in the house where you might not feel as safe. just yeah, just be adaptive and creative and really focus on what’s meaningful in the end. That’s what it’s all about is what’s meaningful. And what are the things that are. Deepest in your heart that you really want to do, talk with your loved ones, what’s a priority for them and what will make them feel like it’s the holiday, whether it’s the religious services, can you watch on TV? Can you get on a video call and say, things together the music that you can watch online or on TV, finding ways to do that and make it meaningful for everyone. And that’s really what the holidays are about.
Very true. I’m with you on me. I’m going to be doing some of that myself. I think the
is yeah. Yeah. I think the key here is, let’s face it is a mess along the way. We’re going to have to adapt and we’re going to have to find a sense of humor and just make new with what you have. and just be hopeful that a year from now, we can be face to face one-on-one next to our level.
And one caregiver sent to me and you know what, it’s going to be such a sweet reunion next year. It’ll make it all the better. when we have had a break from these things and the other thing I should point out is that some caregivers are actually relieved. They are exhausted anyway, they’re, regular caregiving, you know is tough on them and then trying to make it a perfect holiday on top of that is really exhausting. So some of them are glad to get a break this year and not try to make it a huge thing and they’ll enjoy it next year. But this year focus on, the few things that really make it right. I tell people, put on a holiday. A tablecloth or sheets on your bed, or tell us something little get a poinsettia flower, something that makes it feel like it’s Christmas-y or it’s holiday or it’s Hanukkah time or Kwanzaa or whatever, a new year’s, whatever holiday yourself celebrating. we’ve already had Thanksgiving do the little things that work for you, and don’t take quite so much effort in terms of time or mental energy.
Very true. I’m going to take some of those advice too, I really think, if within your circle of your family, if they’re healthy and they’re near you, those are basic things in life and what a blessing it is. If your loved ones are healthy and not in a hospital right now.
Right, right. I feel, I do feel very lucky that technology has advanced to the place where we can do these things. and I do recommend that you try to schedule. Connections, especially if you’re doing things virtually this year, because a lot of times families come together for a week at Christmas time between Christmas and new year’s and they it’s very intensive time together. And now we’re not going to do that necessarily. So if you spread it out and say, okay, once a week, Heading up to the holiday, we’re going to have some kind of a connection, whether we’re going to do a zoom thing or we’re watching a movie or we’re doing a craft or we’re baking, or we’re doing, you know, whatever is meaningful work. We’re looking at old scrapbooks together. We’re watching home movies, whatever those things are and and schedule it. Because I think if sometimes if we just think, Oh, this will happen. And it doesn’t happen. I think it gives us something to look forward to. And that’s a lot of what the holidays are about.
Schedule it, you’re not scheduling the one-on-one visit, but you certainly can schedule a call via some form of technology. So that’s
Some type of connection.
so now can you tell us about the AARP Facebook group and any other resources that are available for caregivers?
Yes, we have a FA a group on Facebook that you can join it as a closed group, which means that you asked to join the group. and unless you’re a scammer or a spammer or something, pretty much, we will accept you, but it makes people feel a little safer than it is a closed group and that they can express themselves and their frustrations and people are, they talk about, their triumphs and their joys and their caregiving. Yeah. Things that work, give each other tips. they vent and talk about how hard it is sometimes or how angry they are, or they’re frustrated. you can do that too. we share a lot of good information and tips. I do a Facebook live chats in there with various guests and, just we try, we’re just there for each other and it’s a very supportive community and that we’re building and we have almost 5,000 members now.
Nice. Nice. And what is the name of the Facebook group? Caregivers.
So if you go on Facebook just search AARP Family Caregivers Discussion Group. And and look under, when you do a search, be sure you click on groups. So you see the groups that come up. So it’s AARP family caregivers discussion group. And if you want, the link is just facebook.com/groups/aarpfamilycaregivers
Okay, great. I’ll make sure to include that in the show notes as well.
Great. And please do, checkout AARP.org/caregiving where we have all kinds of resources for caregivers. We have videos and tips and articles and tools and from a long-term care calculating tool to all sorts of. Of resources on finding local resources, services, and supports in our community resource finder. And you’ll just be amazed at the connections that we have there for you.
That’s great. That’s great. So do you have any other thoughts that you would like to share?
you know we start out talking a little bit about the mental health aspects of caregiving and just what caregivers should be aware that, it’s not uncommon to have changes in your mental health situation and to not feel as good about things. When caregiving, and then you add the pandemic on top of it, and then you add the holidays on top of it. be aware of yourself, watch for those red flags. Are you sleeping more or are you not eating as well? Are you letting things go? Maybe not keeping up with the mail or the finances are your other relationships suffering? Are you heading into burnout? are you suffering with anxiety and depression? Be aware of those things, pay attention to those red flags, do some things to fill yourself up, get medical support if you need it and connect with other caregivers. and that’s one of the things that. We find gives us all hope because a, we see others who are going through similar things and be that they get through it. And we will too. So look at AARP.org/mentalhealth where we have a lot of great resources for caregivers and others all around the mental health aspects and supports that are out there for you.
Great. Great. gee we’ll thank you. Thank you so much for the opportunity to talk and learn more about caregiving in the Facebook group and just your wealth of knowledge
Thank you so much. Thank you for having me. And you can always learn more about my story and a lot of great tips in my book. Juggling life work and caregiving.
Awesome. It’s been a pleasure
You too, Hanh. Thank you so much for what you’re doing and stay safe there in Michigan.
Yes. Yes. Thank you so much.
You’re welcome. Take care.