Hope for living, loving and caring with no regrets!
This week, Rayna Neises, your host, talks with Jane Daly. Jane is an award-winning author with two published books and two more in progress. She serves on multiple boards and regularly teaches writing at workshops and conferences. When she is not teaching, speaking, or practicing writing, she can be found in the financial district, where she is the Branch Officer at a bank. Jane cared for her parents and shares the following insights from her season:
- We often slip into the caregiving role without realizing it.
- Take a step back and remember that your parent may have lost his/her independence, but that does not mean they have lost their ability to make choices of things they want. Chocolate cake for breakfast is okay!
- We need to learn grace and to be able to give ourselves grace too.
- Grace can help with the guilt.
- Part of self-care is knowing yourself and what rejuvenates you.
- Do not hesitate to reach out to others for help. It is okay to let other people in.
*Transcript is an actual recount of the live conversation
Welcome to A Season of Caring Podcast, where there’s hope for living, loving and caring with no regrets. This is Rayna Neises, your host and today I have special guest Adrienne Glusman. Adrienne’s a professional speaker, ambassador, advocate on the topic of Millennial caregiving. Sharing her story and journey as the only child caregiver to her mom, Hetty, who passed away in 2020 after living with Multiple Systems Atrophy since 2010. Adrienne’s story, as Hetty’s caregiver, was featured in the Wall Street Journal article The Call to Care for Aging Parents Comes Sooner Now. Her story has also been featured in Health Magazine, Toronto Sun and Vox.com to name a few. In addition to keynote speaking, national conferences for Leading Age, National Church Residences and the Multiple System Atrophy Coalition. Adrienne has also been involved with various caregiving campaigns including serving as a Caregiving Ambassador for E M D, Serrano’s: Embracing Carers, Leading Ages: Carrying the Convo and the Scan Foundations, Do You Give a Care? You can follow her on Instagram and Facebook at Journey Caregiver, where she is lending a voice to her journey so other millennial caregivers can feel seen, heard, and supported. And if you are a millennial caregiver, join her free Facebook group, Millennial Caregivers Corner. Welcome, Adrienne. It’s so good to have you here today.
Thank you. It’s an honor to be here. I look forward to chatting.
So let’s start off and just share some of your journey with us of caring for your mom, Hetty.
Sure. So I started my caregiving journey, although I wouldn’t necessarily have called it caregiving back at age 29. When my mom was diagnosed with Parkinson’s disease which in turn at first I didn’t feel very affected by it. It wasn’t like potentially someone getting a cancer diagnosis. I knew a little bit about Parkinson’s but not so much that it was like this life-altering news when my mom told me and I didn’t notice anything really different about her. So I kind of just went about daily life at the time I was living in New York City. I had moved there in 2004 after college and mom was back home in Florida. So when I would come home to visit, I started noticing little things that were just kind of off. And I would always tease my mom because she had recently retired and I was like, Oh, you’re just being lazy. Cause you know, you’re retired, you know, just little things like cleaning around the house or, taking out the garbage, we lived in a condo that was on the second floor and just little things, but still just attributed it to retirement laziness. Then all of a sudden I got a call from my mom’s friend who was supposed to be picking her up to go to dinner that night. And she called and she said, mom’s cars out front. I’m knocking and she’s not answering. And I talked to my mom multiple times a day since I lived long distance. And she hadn’t answered the phone that day and I just kinda got busy with my Workday. So didn’t really think twice come to find out that what happened is that mom had passed out. She was unconscious on the floor of her apartment for, we think maybe 12 hours, without knowing. And that was that pivotal moment that I knew that my life was about to change forever. So fortunately she was all right, but I knew at that point, it wasn’t going to be safe for her to live alone anymore. So I flew home from New York and we set up arrangements to move her into independent living. A community so that she could still have her independence, but she would have more of a watchful eye over her. So she was doing pretty well in independent living. I went back to New York, but as the time was passing there would just be more instances where I would get a call from the independent living that mom fell, or mom had to be taken to the hospital and living, you know, in New York City, more than 2000 miles away. I would just drop everything at the drop of a hat book, a one-way ticket to fly home to Florida, to help care for her because I’m an only child and my parents are divorced and we don’t have any family in Florida. So the responsibility all fell on me. After doing that for a while to be perfectly honest, the anxiety and the number of times that I just had to pick up and leave. It was just all getting way too stressful. In 2015, I made the decision to leave New York City after living there for a decade, you know, that’s where I truly came into being the person that I am today. It’s where I got my career started, had this amazing base of friends. I actually had just gotten accepted to a dream job that I obviously couldn’t take because I knew that I was called to go back to Florida and care for mom. So I picked up and moved, which was a huge transition for me, to be closer to mom. And at that point, I knew that independent living probably wasn’t right for her anymore. Her disease was starting to progress. So I made the hard decision to move her into the next level of care, which was assisted living. I moved mom down to Miami, which is where I moved. When I came back to Florida, there were more job opportunities here. I knew people here and to be perfectly honest, there wasn’t really anything left for mom in Tampa anymore. She had become disengaged with friends. She wasn’t working anymore. And it just made more sense to have her close to me. So when I brought her down here and we found a new movement disorder specialist, he actually rediagnosed her to having MSA, which is Multiple System Atrophy P- Parkinsonism So that was a whole new layer of, you know, what is MSA. I’d never even heard of it. But so many more things that were happening with mom made sense, like the drops in blood pressure, the passing out, her inability to swallow, you know, certain things just for making a lot more sense. So caregiving from a distance is obviously a beast, but caregiving, when you’re right here has its own set of challenges. When I first moved back, I was working a nine-to-five job and I was realizing that getting off at five, o’clock having to drive an hour and a half in traffic to get to mom’s ALF to be able to be with her and care for her. It was just getting to be all too much. So I decided to quit my job and start a business of my own. I’ve always, definitely been an overachiever. I go the extra mile. So I started my own project management business in 2017. Which I thought I was crazy to try to start a business and caregive because as we all know with caregiving, the shoe can drop at any time. But I must say that despite all the challenges, it definitely afforded me the means to be able to show up for mom more. I would work from her apartment. I joke and say that my laptop has seen the inside of emergency rooms and hospital rooms more than anywhere else, because it definitely allowed me to be by her side through kind of all the ups and downs. So, it’s a neurodegenerative disease. I knew she was never going to get better. She would just continue to decline and fast forward to 2020 obviously the pandemic hit in March and she was in an Assisted Living Facility. Fortunately, because I was a 20 to 25 hour a week caregiver for her pre COVID. I was able to come into the facility as I did before to continue to care for her during COVID, which my heart goes out to everyone who has loved ones in care facilities during the pandemic because just seeing what it was doing to mom, to other residents, it was just, it was just heartbreaking. During this time I started noticing more decline, mom, losing weight, not wanting to eat as much, not wanting to have as much fluid, but, you know, I kind of always thought that, whenever I was there, she would always eat. She would always drink. She would always be more peppy. So I was kind of in denial that she was slowly getting worse. And then it was August, 2020, Mom got a UTI, which she’d had a thousand times over because she was incontinent and wore pull-ups. And it’s very common in the elderly to get UTI. And I was of the mindset that she would take her little antibiotic and she would whip back into shape. But unfortunately, one thing led to another, the UTI wasn’t getting any better and It got to the point where mom stopped eating. She stopped drinking. So I made the decision to put her into hospice and we put her into hospice on a Friday. I decided to have her go, hospice inpatient, that following Tuesday. Cause I was so convinced that we as caregivers, we’re always fixers. We’re always in research mode, you know, trying to figure out what the next best step is. And my next best step was, well, if she’s not drinking, then let’s get her on an IB of fluid and see if that helps revive her. So she went into hospice inpatient, unfortunately, that did not do anything. And she ended up passing the following Wednesday. So I’m, I guess about five months out from her passing and it’s been a really interesting journey to say the least. I always say that caregiving itself is an interesting journey, but I think self-identifying as a caregiver for over a decade and then all of a sudden not having that identity is really, really hard. And I was, very conscious about maintaining my own identity outside of caregiving as much as possible when I was going through the journey because I always knew that there was going to be a day that I didn’t have my mom and I didn’t want to be left with nothing at that point. But despite that it’s been an interesting process grief. I knew nothing about it. Although I did learn about anticipatory grief, which in looking back, I realized that I went through cycles of anticipatory grief for 10 years as I watched my mom decline and decline and decline, but yet I never recognized it as grief. So here I am just kind of going through grief, trying to give myself grace for its many ups and downs. It’s many stages. I feel like I’m slowly coming out on the other side of caregiving. But it, you know, it’s definitely, I guess part two of what I like to call my caregiving journey.
I’m sorry for your loss. I know. So I know that grief can be really overwhelming at times. So you did an amazing job for your mom. I love that you guys were so close and were able to share that long journey together. And I like to say that our goal is to walk them all the way home. And have a life to walk back into. I think you’ve done that well, and I love that you’re continuing to have the heart for others, and I’m really glad that you’re able to share your journey so openly and have done that through the whole process. What do you think some challenges for millennial caregivers are that might be different than other caregivers?
Oh, yeah. So, I mean, I know some of the more specific challenges first and foremost is when I came into caregiving. As I mentioned at first, you, I think when you’re younger, you just, you don’t even identify with the caregiver or carer a care partner, whatever you want to call it, it’s, it’s like, I think you see your parents caring for their parents, but that’s not until later in life, that’s not until you’re married and you have kids and you’ve established a lot of these kind of pivotal milestones that people go through in their twenties and thirties and forties. So it was really, really hard because nobody that I knew had gone through something like this. It’s not something I could just talk to my friends about. Like when I went through a breakup with a guy or, you know, I was having problems at work .It was a whole different ball game. So. It was a bit of social isolation in terms of who do I turn to? I feel so alone in this, the only people that I knew that were caregivers were my mom, my cousins, who I saw care for their dad, but they were so much older that even though there would be aspects that they could relate to. Here I am and most millennial caregivers, you’re not only caregiving, but depending on your age, like you’re trying to make it through college. You’re trying to get that first job, or you’re trying to establish a career. You’re trying to date, you know, you’re trying to find your life partner and it’s like caregiving mixed in with all of these other things that we go through in our twenties and thirties, it was just, you feel lost. You feel lost, you feel alone and you feel unsupported. I would say are probably some of the biggest things for millennial caregivers.
And I love that your voice is out there and helping others that are finding themselves here to realize they’re not the only one. I think all of us as caregivers have a tendency to feel like we are the only one. And so finding that voice, that sounds like my voice can be so encouraging. So I love what you’re doing. And I really appreciate that you’re differentiating those challenges that you experienced at that age. Tell us a little bit about some of the things that you’re doing with the Millennial Caregiver and how you’re helping others?
Sure. So when I was still in my care journey, I randomly one day just decided, let me just start an Instagram account. Like, let me just kind of document the realities of the day to day caregiving of my mom. Not thinking, Oh, I’m gonna. Help other people, like, I really just thought it could be cathartic for me. Like it could really be a way for me to come to terms with what I was going through to help kind of deal with the grief and the everyday struggles. And it came to pass that I had millennial caregivers who were finding my Instagram and they were reaching out to me and saying, Oh my gosh, I feel like a weight was just lifted off of my shoulders, finding you. I didn’t even know there was anyone out there going through this, like reading, you know, seeing your posts and, and, and going through your journey with you is just so relatable. And that just really struck a chord. It really, really struck a chord in that even through my care journey. I there’s so many resources that exist for caregivers in general, but for millennial caregivers, it was it. I found a lack. I just found that there was just not a lot out there specifically to cater to the needs of millennials as caregivers. To help support their care journey, but then also to help support all of the other things they were going through as a by-product of their age. So. I decided, kind of getting some amazing feedback from my Instagram handle. I started reaching out to be on podcasts, to write blog posts, to be included in different articles. And now that my care journey is behind me, I’m finally coming out on the other side and recognizing that helping to serve millennial caregivers is truly my purpose and passion. I always had this little nudging feeling inside of me during my care journey that my intuition was saying, you got to do more with this. There’s a need, there’s a pain point. Like use your voice, use your voice, use your story. And it’s just at the time it was just between caregiving and everything else it was just too overwhelming to imagine trying to do anything more. But now I have started a Facebook group, Millennial Caregivers Corner which I welcome any and all millennial caregivers into whether you’re in your journey. If your journey has ended, it’s really a place for the community. It’s really a space that I feel millennial caregivers can come home to, to help find support, to help find validation. And just knowing that they have this home base of friends. Who really get them, but they can be seen and they can be heard. And, and just, just to get them, it’s, it’s kind of like these friends that you’ve never met in person. But that quickly becomes your family because you all know and can relate to the other things that the other person is going through. So I look forward to expanding that group and creating more offerings in terms of resources and support. Just anything that I can do to really help to address the needs of millennial caregivers, advocate and continue to support them on their journeys.
I love that you’re building that community that you didn’t find for yourself, where you can have those conversations, the other people will go, Oh my gosh, I’m there too. Or I’ve been there and you’ll survive it, that kind of thing, because I think that is one of the things that’s so difficult is that finding the common person that you really can, you feel less weird. And so finding your group that makes you feel less weird. So I love that you’re being able to do that. And then just having the opportunity. To do some speaking to raise the awareness in the general population about this situation that’s happening. Our number one, growing group of people that are stepping into these caregiving roles are millennials It’s so important for everyone to be aware, employers, to understand the needs of family members that need to take care of their loved ones. I just love your voice in that.
Yeah. Well, thank you. Yeah. I feel like it’s you know, years ago when I first started my journey, it’s just, there just wasn’t a lot out there. The media wasn’t covering the topic. It was really, really hard to find anything. But in recent years really kind of high-profile publications. I mean, Forbes.com just published an article saying that 60% of first-time caregivers are of the millennial or gen X generation. I mean, the media is starting to bring it to light. And the more light that gets shed on caregiving in general, of course, but specifically millennial caregiving the more that we can try to advocate for you know, more support in the workplace, more government support paid leave all of the things that are just the recurring patterns and themes of young caregivers in terms of needing help and needing support on a higher level.
Like you said, when you started your journey, you didn’t even realize you were a caregiver. I think most of us listeners that I have identified at this point that you are a caregiver that’s why you’re here getting this support through our podcasts. But I think so many times we don’t realize that, but when we actually take on that hat and embrace the caregiver hat. It helps us to find that there are resources for us. So tell us a little bit about how that impacted you.
Yeah. When I first started this journey, I was 29 years old and I always knew that I was going to have to care for my mom one day. But I always thought one day would come 30 years down the road. So at that time in my life, it was just like, okay, well, I’m stepping up to do what my mom did for her parents and what so many do for their parents. So I didn’t even know what to do. I didn’t know where to turn. I didn’t seek out support groups or resources or caregiving organizations. I just kind of did it all on my own. I mean, Google is everybody’s best friend, but Google really was my best friend at the start of my journey. I, I don’t even know why I don’t even know that I’d formally heard the term caregiver to be honest at 29 years old. Why would I have heard the term caregiver? I mean, none of my friends were caregivers. Like no one had gone through it. So it was just a term that was not relatable. And it wasn’t until 2015 that I kind of turned a corner and I like to call it coming out of the caregiver closet. All of a sudden I was like, Oh, wow. Okay. I am a caregiver. I’m a caregiver. Okay. Well, what is that? And it wasn’t until I started Googling caregiving and then I started digging down deeper and I started Googling Millennial Caregiving, younger caregivers, and I’ll never forget. The first thing that I came across was an article. I think it was from Cosmopolitan Magazine. And it was about a girl and she had cared long distance for her father. She was around my age. She was living in New York, but she had to go back and forth from New York to California to care for her dad, which was very similar. Cause I was going back and forth from New York to Florida. And that was the first time that I was like, Holy Cow. I am not the only one out there. And that got me even more motivated to really start drilling down and looking for resources and looking for more millennial caregivers out there. So I find that it’s so important, whatever you want to call it. I know that caregiver is not always the best fit, so carer, care partner, care person. But I think it’s so important for people to start identifying because I truly wish that I would have reached out much earlier in my journey for support and resources. I, I truly think it would’ve made a world of difference.
Coming out of that closet. I love that because it really is a process. And once we embrace that, it does bring us to so many resources that are available. I think also just shifts our own mindset to help us understand that this isn’t just taking on a little bit, helping out here and there. This really is a responsibility that is going to tax you, is going to bring things into your life, needs are going to be significant and you need to make some adjustments and realize how to do that so that you can live your own life and have joy for yourself as well as love and honor the person you’re caring for. Well, great to have you here. And I’m so excited to be able to share with my listeners your resources. Again, you can find her on Instagram and Facebook under Millennial Caregiver, and that reminder of that new Facebook group facebook.com/groups/millennial caregiver corner. So I love to have you connect and thanks again for being here today.
Just a reminder. A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please consult your local professionals and take heart in your season of caring.
*Transcript is an actual recount of the live conversation
Speaker & Christian Author
Jane is an author/speaker/teacher based in Oregon. She has served on the boards of Inspire Christian Writers as well as West Coast Christian Writers and regularly teaches the craft of writing at workshops and conferences up and down the west coast.
An award-winning author, Jane’s first two books, Because of Grace (Hallway Publishing, 2015) and The Caregiving Season: Finding Grace to Honor Your Aging Parent (Focus on the Family, 2016) established her as a moving nonfiction voice.
Jane navigates all genres effortlessly, having written articles, essays, flash fiction, and a regular blog. She is nearing completion on two novels-in-progress and has been anthologized in several publications.
When not teaching, speaking about, or practicing writing, Jane can be found in the financial district, where she’s the Branch Officer at a community bank.
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Your turn, share your thoughts . . .
- How to Keep Your Sanity While Caregiving - Jane S. Daly - […] https://www.aseasonofcaring.com/2021/06/09/learning-grace-caregiving/ […]
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Meet Your Host
Rayna Neises, ACC
Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Podcast Host & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.
Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected
Thanks for having me!
Thank you for this wonderful podcast with Jane Daly. I have read her book – I need to take it out again because Mother is now 100 years old last January and lost her independence only about two years ago but I am number one go to person. Her hearing and memory are all vastly disappearing and it is getting more and more trying to be graceful in her presence. But God is good and helping me. My “me time” is Zentangle drawing Which I found while reading a little mystery novel. Never was an artist or thought of anything art before last November but this has truly been a lifesaver for me as I can totally Zen out for the time being for mental health.
Polly, I’m so glad you enjoyed the episode, it was wonderful getting to talk with Jane. I am excited to hear you have found something for you that brings you joy. It is difficult to watch our parents age, I’m thankful your mom has you to call on when she needs to. Blessings, Rayna