When it became clear that Eddie was failing, we thought about how to Make a legacy for this wonderful sweet special man, and I became aware that the Autism Brain Institute had a program to collect brain tissue for research and contacted those people ahead of time, which you must do in order to contribute his brain for scientific research. 

Are you caring for others while working and trying to live your own life, wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy Caregiver podcast, which is part of the Whole Care Network, is the show where real family caregivers share how to be happy and healthy while caring for others. Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care advocate, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers integrate self-care and caregiving into their lives. Each episode has an accompanying show notes page.

If you’d like more detail about the topics, products, and resources we speak about, or you want to see any of the related photos, you’ll find the show notes by going to the website, happyhealthy Caregiver. com, and underneath the podcast menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode.

Thanks for being here and listening to the podcast. Supporting and educating family caregivers is at the heart of what I do, and this show allows me to share helpful, accessible information with those who are gonna need it most.

With 63 million family caregivers in the US juggling so many things, I want this podcast to be a tool that helps them reduce or prevent or recover from caregiver burnout and feel connected to the supportive community. One of the best ways that you can help grow. This podcast is by sharing it. Tell a friend, a family member, a neighbor, a co-worker, or even post it to your Instagram story. You never know who might benefit. Every share helps expand our reach and strengthens Happy, Healthy Caregiver, making it more appealing for new collaborations and sponsorships.

Thanks for helping to make our community grow. And if you’re interested in sponsoring an episode, opportunities are available and affordable. I’m happy to share download numbers and. Listener demographics, this platform is a meaningful way to reach the caregiver community with your product or service. Speaking of sponsors, I want to thank this episode sponsor, Crazy Compression. Do you ever feel like your feet and your legs are exhausted by the end of the day, or maybe you’ve noticed a bit of swelling after sitting or standing for too long?

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I want to talk about the book. That I read called The Honey Don’t List by Christina Lauren or Lauren. Is it Lauren or Lauren? Who knows? Well, The Honey Don’t List is a fun, charming rom-com about two overworked assistants trying to keep a famous home renovation couple’s crumbling relationship from going public. Carrie and James are forced to join their feuding bosses on a book tour, doing everything they can to keep the chaos under control while protecting their own jobs at the same time. As they team up on the road, unexpected sparks fly between them, giving them a chance to build something real, if they’re brave enough to grab it.

I kept picturing Chip and Joanna Gaines, although I know, I think their relationship is really good, but maybe with like a Rachel and Dave Hollis element to it when I was reading this. It’s a light, entertaining read with humor, heart, and plenty of behind the scenes drama. I’m giving it 4 out of 5 stars, and I’ll link to it so that you can check it out. I want to share one of my current favorite things with you. This is something that I have been incorporating into my healthy diet routine, I think for a year.

Now, normally we have the sugar-free groons version, but the one I’m here is not the sugar-free because my husband bought the wrong one, but we love him anyway. And he bought these at, at Target, and you can also order them online. But what I appreciate about these funny named Prunes is how practical and thoughtfully designed it is. It’s one of those products that seamlessly fits into my day without adding a lot of work, which as caregivers, we know is the real test. These are just a grab and go type of things.

You eat the whole packet of them. They are superfood greens, gummies that are meant to fill the gaps in your nutrition. They claim to support gut health, energy, immunity, recovery, beauty, and cognition. One of the things that my husband and I believe is that we do feel like the gut health for sure helps with that, and we also feel like it definitely helps with the immunity because we find that we just are not, you know, missing as many days of not feeling well. We think maybe it’s because of the groons, Frank Lazy.

I’m gonna link to it so you You can check out all the vitamins and minerals and stuff in here. It’s 9 g of net carbs, 60 ingredients, whole food, vegetables, fruits, vitamins, minerals, super mushrooms, antioxidants, adaptogens, gut health, prebiotics, and clean ingredients. So it’s vegan, gluten-free, nut-free, dairy-free, no artificial colors, no artificial flavors. Doesn’t get much better than that. They have this cute little, I’m gonna Open up a pack so y’all are watching on YouTube can see here is they look like little gummy bears, and I’m not gonna eat them because I’ve already had my pack for today.

I would start with the sugar-free ones because I don’t think we need the, the sugar, sugar in this necessarily. So check it out, groons, and let me know what you think.

Let’s meet our caregiver in the spotlight. Cathy Stein spent decades as the legal guardian and devoted advocate for Her younger autistic brother, Ed. After Ed’s passing in 2024, Cathy and her siblings chose to donate his brain to scientific research, a powerful act of love that supports future breakthroughs in autism and neurodegenerative disorder understanding, and also leaves a legacy for his family.

In this episode, Kathy shares what lifelong advocacy really looks. Looks like, how compartmentalizing your day can protect your energy as a caregiver, and why navigating state by state care systems can be so challenging for families. She also walks us through the brain donation process, her idea for a compassion pill invention, and the creative way she stays active through her beloved big box walking routine. I hope you enjoy the show.

Hi, Kathy. Welcome to the Happy Healthy Caregiver podcast. I’m so happy to be here, Elizabeth. Thanks for inviting me.

Yes, I’m excited to get talking to you. Uh, we start out all of our shows, Cathy, with some words of, uh, wisdom, empowerment, encouragement from the happy, healthy caregiver jar. So I want to get your thoughts on what we’re going to pull out here for you today. OK. It says, be imperfect. is to be human. Your best was and still is enough. Did you ever need to hear that as a caregiver, that you were enough, that you were doing enough? All the time, you know, I think one of the things that being a caregiver reminds us is that we’re working on something really important, even though there are some imperfections or missteps along the way, that the goal is noble and worth doing.

I like that. The goal is noble. Yeah, I know there’s no perfect, right? Like even we just recently moved my brother into a community. So I care for my brother who was born with intellectual and developmental disability and is on the autism spectrum, so can certainly relate as sibling caregivers there. And we just recently made a really big, you know, year in the year, over a year into making a decision to move him into the community. People are like, how is he doing? Doing? And I’m like, well, there, there really is no perfect solution for him and for our family.

So you kind f are like, it’s got to be enough. Like you look in, you trust the process, you make the best decisions with the information that you have at the time and, and you, you pivot as you need to, but certainly we, we do our best, right? We do our best with what we’ve got available. Well, I want to dive into your story, Kathy, with your brother Ed and You know, talk about, talk about how you and Ed grew up and, and, you know, what you did together and maybe even how your parents prepared you in some way for being a sibling caregiver.

Did they prepare you? I’m interested kind of in hearing about your relationship with Ed in your, in your, in your early years in particular. Yes, good, good. Well, uh, Ed. And I were fortunate to be part of a big family. There are 5 siblings. Eddie is the youngest child and the only boy in the family, so he had 1 mother and 4 big sisters along with our dads. There was a lot of love and affection and companionship coming his way from a host of people. It was pretty clear when Eddie was a toddler.

that he was different, but we didn’t really understand the dimensions of that. And in fact, back he was born in 1956. Back in the 1.53s and the 1960s, as I’m sure you know, people didn’t know about autism. It wasn’t part of the lexicon, and he was not accurately diagnosed, not that that made a big difference in the scheme of things. Until his mid-thirties, so growing, Eddie was always part of all the action. He wasn’t one of those people who got hidden away, and we, uh, enjoyed his quirks and differences.

He had loads of personality. Even as a young child, I remember him bouncing around in his crib and figuring out a way to move the crib around the room by jumping up and down and pushing against the edge. He was like a kid on wheels before he had them. Nice. We spent a lot of time with him, going to the playground, around the house, many, some years before our family was in Austria for a year when my dad was studying there. So when we got back and we had the happy news that we had a new baby brother, when he got old enough to talk, we taught him how to count in German and how to say v gates and things like that.

So he was, uh, he was loads of fun and we enjoyed him from a very young age. I can see you all like doting on him. I’m one of 6 kids and we have 3 daughters, 23 girls, 24 boys in my family. But yeah, I can see where you, you’ve are just, you know, making sure that all his needs are met and that you have like a live baby doll in, in some ways. Yes. And I also appreciate how you said that, you know, the autism diagnosis was, was not something that existed.

We just recently got my brother diagnosed at 21 years of age. We weren’t, we weren’t surprised by it. Um, and we knew he had an intellectual and developmental disability, but in school years, he was put in kind of learning disabled is, is kind of where he was categorized. What did, what did the school years look like for you and Ed? Like, how was he? He went to regular kindergarten at the local school, and then they tried a bunch of different things to see if they could help him to learn.

For a while, he was in a Montessori school. For a while, they tried him. In a school for the deaf, which didn’t seem to be particularly helpful. Then when he was 240 years old, basically we lived in Massachusetts at the time, and the state had a provision where if there were not appropriate facilities for young people in the state, they had a program where they would provide for care more appropriate in a Different locations. So Ed at the time went down to the Devereux schools in Pennsylvania and was there until he got to his late teens and then he lived in group homes in Connecticut where our parents were living at the time.

There were issues around that, but then happily in 230 we were able to move him up to. New Hampshire, where it’s much more a family-based program, it’s much more intimate, much less institutional and bureaucratic. It was a wonderful, wonderful thing for him. Good, good, good, good. And, and what, at what point in your life did you really start to take on more of a caregiving role? And how did your parents prepare you and your siblings for that? We all knew from a very At a young age that we were all to take care of each other, the sisters caring for each other and also caring for Ed. But our parents in particular wanted us to become actively involved in Ed’s care and advocacy, and they said do it while they were still around because we’d have the inevitable questions, mistakes, lack of information.

What about This or that, and they wanted to be around to help us, but also have us get accustomed to the role that we would be carrying out in later years. That was really forward thinking of them. Like, I’m very grateful my folks have did a special needs trust for my brother, and that they got his, you know, documents together as far as power of attorney and, and things like that. But I really feel like there wasn’t a lot of The transition in the other ways. Did you feel like you got all your questions answered?

Well, never all of them, but the vast majority, and we were fortunate that our mother lived to the ripe old age of almost 240, so he was around for a long time. But when it came time for guardianship, I asked our parents if I could be named Eddie’s guardian because I just adored him. And uh they were happy to have me do that. One of my sisters is a lawyer, so she assumed responsibility for that aspect of his care, but I was really happy to be named as the guardian by our parents, and then our mother was around for a good number of years, 143 more years while I was doing that job and seeking her advice regularly, and also my sisters, all, all 214 of us.

Always collabrated when we had a question or concern, the best approach or whatever. Yeah, we have not gone through the guardianship process for my brother, which is interesting. We have the trustee process. Was there a reason why you, your family felt like the, the guardianship was the right move? Absolutely. First, he needed that. He was not able to make decisions for himself in things like medical care, for example, at one. He developed prostate cancer, so I had to make the important but very difficult decisions about what was the best course of treatment for him there.

And I would say also the role of guardian is not just to, in my view, is not just to do what is right and good for the person you’re guarding, but also to think what would Eddie want, what would he do, and to incorporate. that very personalization of decision making. Well, it sounds like they got the right, the right person for the, for the job. What did, what did caregiving look like for you and your siblings? Like, what roles and responsibilities did you do and were you doing them remotely or nearby?

Eddie, how did, how did that work out? When Ed lived in Connecticut, I was in New York and then in Massachusetts, but I was very actively engaged in Advocating for him, so I would regularly be down in Connecticut to take him out for the weekend, to go to quarterly meetings, to meet with his case manager, to talk with the staff, to determine if there were issues or concerns that we had about his living situation or his engagement in the community. So it was very much a big part of my life, very much a big part of our parents’ lives as well, and my sister’s two very Degrees.

Yeah, I feel like, so you probably know this too, in a family, everybody’s got different strengths and weaknesses. And a lot of times people are like, Oh, great, you’ve got all this support. We’re like, well, everybody’s, you know, got their own things going on and a little bit of that. And I know for me early on, I had to give up the, that I knew, I understood that it wasn’t going to be equal. Like everybody’s work on this was like, how did you come to terms with that, maybe with your siblings and that, how you all were going to divide and conquer, how you were going to Be OK with, you know, how they could show up in the way that they could show up.

I, I don’t think it was so much as a game plan. Maybe that would have been helpful or would have made things a little bit easier, but we each, I think, did what we could. We stepped forward. It was chiefly voluntary, you know. We, we all understood that, uh, for example, one of my sisters who had little kids had a lot of her time spoken for. And therefore had less time and capacity available. And also it was just for me very much a personal decision. I adored my brother and I wanted to take care of him and be engaged and it was, it was just something that was a really, really big and positive part of my life, I think.

That’s amazing. And you know, I know not everybody feels that way. So to have that, you, you feel like it was an addition to your life and not taking away from your life is a gift. What are and were some of the unique joys of and challenges, maybe even of supporting a sibling with autism and I think he had other things you mentioned prostate cancer and some other health things going on, but what were some of the unique joys and challenges, I think, of, of your relationship with, with Ed?

The joys were just very much involvement in his life in a personal way and in small ways. You know, going out for a cup of coffee, listening to him make, um, enjoy funny sounding words like he’d say broccoli at ta ta, and we always got a kick out of that looking at his favorite movie, which was Chitty Chitty Bang Bang. He loved to travel, so we spent a lot of time, including 265 cross-country trips in the last 2300 years or so between Arizona and here, and he’d loved to travel.

He’d get very involved in collecting postcards and anything related to the mail, so that was always a source of engagement and camaraderie between us. We’d drive around and see what time the mail went out of the mailbox on such and such a street here in Concord, New Hampshire. I think the challenges are, I think the biggest challenge overall was advocacy for him. It is an endless job and it requires constant vigilance, and things that you don’t think would be an issue or a concern come up, so you just have to constantly be on your toes in order to best serve his interests.

I think that was a, that was a big challenge. then. Yeah, about 5 years before he died, uh, he passed away last year, but about 5 years before he died, he got a terrible and quite rare devastating neurological condition called multiple system atrophy, and it’s just exact name sounds like it’s essentially. A combination of Lou Gehrig’s disease or ALS, Parkinson’s, and dementia all rolled into one. He was declining from that before we actually could put a name to it, but that was heartrending and also physically very challenging and challenging in terms of the advocacy to see that he got the care that he needed. Wow.

Well, And I’m sorry, sorry for your loss, Kathy. I know he was, he was a big part of your life and I love the little stories that you have with him. You probably never look at broccoli the same. I don’t know if you’re still watching Chitty Chitty Bang Bang and watching how the mail gets delivered, you know, all of these little things that you’d said he’d had a quirky personality and I can relate to that. My brother’s got his own things that he’s hyper focused on. And then, so, you know, for you as a caregiver in all of these years of caring for him, where did you find support for you?

Not necessarily on how you could better take care of Ed, but how you could mitigate burnout and how you could feel energized and supported and connected to your community. Certainly it was family. OK, good. Then when Ed was up here in New Hampshire, he lived with a wonderful family, and Joshua Brown, Saint Joshua Brown I would call him, was his primary home provider, caregiver, and Josh and his family were also a, a fountain of support and it’s like a group, a smaller group home, or Let Eddie, what he called his apartment in their house, basically he had a little living room, a bedroom, and a bathroom right adjacent to their kitchen and living room, and he lived there with the family.

New Hampshire is very different than than Connecticut, where Eddie was previously. There he was in a group home which was basically a smaller version of an institutional setting here in New Hampshire. Sure he was part of a family, felt that, so that was key. I must say also that the autism community was helpful and the research that was going on in the exchange among family members and physicians and researchers about autism, that was a good source of where, where was that happening? Was that a certain group or online or conferences, both going back.

And also following, uh, following the research, the Autism Research Institute was a good resource for me for information about developments in scientific and medical understanding of, of the causes and treatment of autism, of the Autism Society, so that, that was all very important. And I should also mention here the autism Brain net, that, that was a resource when it became clear that Eddie was failing. We thought about how to Make a legacy for this wonderful sweet special man, and I became aware that the Autism Brain Institute had a program to collect brain tissue for research and contacted those people ahead of time, which you must do in order to contribute.

his brain for scientific research. So that not so much a resource in the moment, but a resource going forward for the future to better understand autism and make the lives of autistics and their caregivers better. That, that’s a wonderful resource. Yeah, I, I, I don’t think people think about that necessarily. It’s a special trait that you and your siblings have to think, like, how do we want to improve the world after The one that we’re in. And like you said, he got this, do they call it MSA for short?

MSA, which was this whole other layer of things on the autism as well. So there’s certainly a lot of neurological findings that they could glean from, from Eddie’s brain. And I, I just, you know, how did you first get introduced to them? Was it one of these other foundations that you just kind of came across them? Was there a pamphlet somewhere? Was it like serendipitous in some way? You know, I can’t exactly recall how I first learned about it, but I, I believe it was through the, the autism research community.

And in particular, though, when, when he had an episode. Where he had to be on a ventilator and because he had aspirated food and gotten pneumonia, then we were faced with the decision that he was going to continue to have issues with swallowing and eating, and that was around the time when we needed to make a decision about whether or not we should have a do not resuscitate order. And so we were struggling with that. We did put in place a DNR and that was the time at which I reached out to the autism brain net and I said, what do we need to do ahead of time, knowing that this sad event was going to be upon us before terribly long?

Yeah. And what, what was the, what were the steps? Because, you know, that’s a very trying time. You’re in a point of transition and even after somebody passed away. Like, grief is super exhausting with all of the details and the things that you have to do. So, what was the process like, Kathy? It’s really quite extraordinary. Uh, and I would say it’s not like if you want to donate your kidneys or your heart or something like that, where you sign up for organ donation when you say, register your car or I mean, get a new driver’s license.

Why don’t they do that? I’m curious, like, well, you have to plan. I don’t know. OK. I do know that you have to plan ahead for the brain donation because it needs to be done in a timely fashion, so. I called the autism Brain net and talked with them about my brother, and they gave us the information. So basically they have a 24/7. Phone number where you can call and say, my brother just died, and they have arrangements for, they have a system where people can come and collect the brain tissue and take it to one of, I believe they have 3 repositories around the country.

I know Mass General here in the New England area is one of them, and then they, so then they carefully store and preserve the brain tissue and remarkably, It can be shared with researchers around the world for decades to come to do research, so it’s just, it’s really an extraordinary program, and it’s done, by the way, at no cost to families. I was going to ask you if there was arrangements, and beyond that they are deeply grateful because it is a rare gift. I would say also just by way of reflection that scientists have learned so much about Parkinson’s and Alzheimer’s from examining the brain tissue of people who have died of those afflictions, so the idea of fundamental.

Brain research is relatively new for autism, but you think of the remarkable insights that can only be gained through, through tissue research, you know, you can’t, can’t do it in the same way that you can do research, say, about the behavioral aspects of autism. Yeah, I mean, your brother’s brain had a lot of things going on with it. So, um, you know, I guess autism was the one from birth and then all of these other kind of things layered on. Um, so I appreciate you kind of sharing logistically and The whole process of the brain donation.

How does it make you feel now? Like, you know, I feel wonderful. In a way, it’s like a part of Eddie is alive, not only in my heart, but out there in the world that people can understand. Autism better? What are the biological and structural causes of it? Not necessarily even to cure. I’m not sure Eddie would have wanted to be cured of autism, as he said, autism is a good thing because I was born this way, but I do think he would have treasured the idea that people would understand him and his fellow autistics better as a result.

of studying his brain. Is that your hope, I guess, or of this research, you know, if you could wave the magic wand on autism research, like what would you want to be true? Or what would Eddie want to be true? I know you’re really good at thinking about what would Eddie want. Uh, I think the first thing he would want is deeper understanding of why. Autistic people are as they are, and as you know, it’s a spectrum, it’s huge, so there are all sorts of variations among people with autism.

Some people have very profound issues because of autism, are not able to speak. My brother could speak, he could read and write, so he could travel, but many people with autism Autism are not able to do those. So I think the first piece would be deeper understanding. The second piece would be greater care and compassion. And I suppose the third wish, this might not have been Eddie’s wish, but it would be mine, that there would be a cure for autism, because I, I wish that he, we, we worked hard, and I think.

By and large, successfully for him to have a full and rich life, but I also would have liked for him to be able to drive a car. He used to say to me, can some people with autism drive a car? I said, some people can and some people can’t. Uh, but I think he would have made a wonderful father. Uh, you know, but that wasn’t in the cards for him. In any case, I, I have a, my wish list would be quite long. Yeah, thanks for asking.

Yeah, my wish list is long for, for Tom too as well. And, you know, Tom does drive. I think sometimes it’s a good thing, sometimes it’s not such a good thing. He does not drive right now in his community because of the liability of it, which has been a little bit of a, a transition for us. But I too would wish that he would, you know, I know he would like a relationship with somebody and maybe that will happen. Mm. But yeah, to be, to kind of have that, that, you know, he’ll say things sometimes about like us having our house and our, you know, units and things.

So I, I definitely think that there’s things that they’ve had to kind of grieve in their own way, frankly. Mhm. Yes, yes, yeah. And I, I don’t know if you would include the information in the, in the notes and follow up, but I certainly should mention autismbrainnet.org. Yes, and their phone number 877-653. I think I’ve got that correct. Let me just double check because I don’t wanna make a mistake, and we’ll certainly link. Yeah, linked to them and some of the others that you mentioned, the Autism Research Institute, Autism Society.

And then I’m, I’m curious, like, in this whole like community, finding the right fit for my brother’s living situation, and it sounds like New Hampshire, and I know every state is a bit different and Georgia may not be one of the best ones for sure, but like was there somebody who helped you with that? How did you find these places that you all and your family found? I would say first is dogged determination, it’s persistence, but then in particular for making the move from the group home in Connecticut up to New Hampshire, one of my sisters was totally instrumental in bringing that about because she’s a psychologist who was very much involved in child and family care.

And she said New Hampshire is much superior and so we worked very hard to find a place for Eddie up here. I must say one thing that would be a tremendous improvement would be if there were reciprocity between the states. For example, when we wanted to move Eddie from Connecticut up to New Hampshire. I had to find a family that had someone in New Hampshire that wanted to move their family member to Connecticut. Now, if you can think of a crazier situation than that, you know, and I was even to the point where I said if I need to do a three-way swap, there’s somebody in Nebraska who wants to move to New Hampshire.

What’s the thought process behind that? I think it’s because the institutions develop within states on their own, and once people settle in, they’re loath to change, you know, because of, because of the scarcity of care for people with needs like your brother and mine. Yeah, it’s so challenging. For a while, you know, what worked in my family is for my brother living in Michigan with my sister and living in Georgia with my brother. I have another brother nearby, so that was the situation before we moved him into the community.

And there was also a struggle in like, there’s not reciprocity of the services, you know, like Medicaid and Medicare, we were having to start all over. On, on the Medicaid process, which, you know, anyone listening that has gone through that is, knows that. The paperwork, I would say, you know, back to the challenges which we talked about a few minutes ago, just keeping up with the paperwork is daunting. And the other thing I found really challenging in the last few years of Eddie’s life was trying to work with care providers who were, who were not particularly comfortable dealing with people with complex needs.

So when Eddie go to rehab after he was on the ventilator and then getting back and recovering, we had to Worked very hard with the rehab facility to convince them that Eddie, they needed to care for Eddie, the whole person. They were just comfortable dealing with people who had had typical rehab needs because of strokes or amputations or things like that. The idea that Eddie had challenges with relearning how to walk and had autism and had multiple system atrophy, they could almost couldn’t be bothered, right? That was the, the.

The dogged determination in me served served him well. I think hopefully in my lifetime, I’d like to see where there are, and maybe some exist already and I’m just not aware of them, but specific neurodivergent providers and places like you’re saying where they’re equipped dentists even, like all of them, you know, it’s, it’s so interesting how they do try to kind of push them towards a typical neurotypical path. And you know, I’ll get that sometimes when I’m making a doctor’s appointment for him. They’re like, Oh, well, he, he could see so and so.

And I’m like, We need, we need the continuity and the consistency, like constantly, like you said, advocating for somebody. And so I hope that that changes. I hope I wish. Yeah, for sure. For sure. Well, what kind of self-care practices, Kathy, like while you were caregiving, you know, doing the guardianship, what, what were you doing to just make sure you didn’t burn out? A couple of things. One, and I learned this from our mom. She had a great capacity to Compartmentalized. So when she was into caring for Ed or one of us or focusing on something else, she would focus on that.

But when she wasn’t doing that, she would do her things that she enjoyed. For me, that would be going fly fishing or hiking, you know, being all into caring for Eddie and then being all into fishing or whatever. Uh, the other thing I found, uh, was that I made the decision that Uh, a big goal in my life was to outlive Eddie so I could care for him all his life. So if he’s that, I mean, he’s 10 years younger than me, so I thought, oh, so I’m gonna be 95 and he’s gonna be 85, and that kind of seemed overwhelming.

But if I tried to focus on smaller steps here now, I’d say, Well, get your ass down to the gym and work out for half an hour because that’s gonna keep you healthy and strong. And it’s going to relieve stress. So baby steps, I would say compartmentalizing, accepting your imperfections, the fact that I wouldn’t do a perfect job, that I’d screw things up occasionally. And I guess the other thing is that I would, um, I took very seriously. The the lofty goal of saying I am living my values.

I am putting what I believe into action in the here and now. And to me that was tremendously affirming in a almost a spiritual kind of way that it said this is a good thing to do, and it made hard things worthy of the effort. Yeah, like when you were, when you were kind of put in a position of having to choose and pick things, you would revert back to your values and Um, I’m assuming family was up there. Absolutely top of the list, yeah, and your own personal health, was that somewhere in the top of the list too?

Absolutely. You know, I, I knew to be able to take care of him, I would need to be a strong, healthy, spry old lady. Yeah. What motivates you now, now that he’s not your motivator to Age well and age powerfully. I love that. I just learned that aging powerfully. Um, what, what’s your motivator now? Um, I think joy in, in life and family, the simple things, the small things bring me great pleasure. I like making a good loaf. Of bread. One of the things that I’ve found since Eddie died is I have a ton more time available, just the time I spent on paperwork and filling out forms for Medicaid and arguing his case for X, Y, Z. All of that is now the gift of time for me.

So I have the luxury and the motivation of time opening up so I can learn how to do not very good watercolors, but they’re still fun to kind of slop brush in the water and the colors and all, more time out in nature, bird watching, hanging out with my sisters. I’m a pretty down home. Gal, I don’t need big fancy things to make me happy and fulfilled and motivated. Yeah, I love that. I mean, when you said I’m making bread, I’m like, I’m making bread. Like I’m there’s something very therapeutic about, are you making sourdough bread or a different kind of bread?

Both, you know, OK, I have a gifted a sourdough starter from somebody. Good for you. Yeah, so I think I’ve made, I’ve made 3 or 4 loaves now and I’ve done 1 discard recipe. So yeah, it’s been exciting to just kind of explore. It’s a whole like world that opens up. Yeah. I know, and then there’s like part of me like I’m, I’m not sure I should be eating all this bread, you know, we talked about like the more protein and things like that, but then I’m like, well, I think it’s supposed to be good for our gut health, and we certainly know what’s in it, which makes me feel better about it.

Well, the other thing with a good loaf of bread is you can always cut it in half and give half to somebody you love. So I’m regularly trotting over to Josh and his family’s home with a half a loaf of bread. So I invest here and half for them. So that makes me, that’s a good because I always think like it’s so precious, but to your point, there’s just Jason and I in the house, so we could give a half a loaf of bread. Like I always think like I don’t have a whole loaf.

I’m not making that much bread. I’m not a factory here, but I have, you’re right, I can cut that in half. Yeah, yeah. Half a loaf is better than none. Half a loaf, it’s fine because you can only eat it for a few days anyway, or freeze it for sure. Uh, well, I love that. I love that you’ve, you know, aligned your life with values. You’re still learning new things. You’re taking care of yourself. I wrote this book, Cathy, called The Just For You Daily Self-care Journal with, it’s a prompted journal.

Journaling was a big part of my. Especially early caregiving, where it felt like I just need to process like so many different emotions, and I probably could certainly benefit from doing more of that now with, as I kind of in this new season of care with my brother. Um, and I have been going back to my closet of tools and seeing like, what’s in here that could kind of help me now in this, in this part. But wrote this with caregivers in mind, but certainly not just for caregivers.

And I picked out a couple prompts for you. No, no wrong answers here. OK. Is there anything currently keeping you awake at night? Are you sleeping pretty good, or do you get up and think about stuff? Sleep very well, and if I have trouble sleeping, I turn on a podcast and listen to it or turn on some classical music, and pretty soon I’m back to the land of nod. The other thing too, and, and I think this is important, is to say, I’m just going to follow the lead.

of my body. If it’s not sleepy now, that’s OK. It’s kind of brilliant to not fight it. It’s hard. I, I’m having trouble with the 40 a.m. hour. I’ve got an older dog that is getting us up. And so every other night it’s my shift to take him out. Um, and those days are, are sometimes hard to get up. But yeah, we make the best of it. What’s one of your, I’m curious what your go to podcast, what’s a, what’s a podcast you’re enjoying? These days, uh, I listen to, what are the ones I enjoy the most?

Well, I’ve been really intrigued by Heather Cox Richardson and her commentary. She’s a historian and she does just wonderful podcasts reflecting on the lessons of history. OK. They pertain to the present moment. So that’s my new favorite. Did you spend your career, did, what did you do for your career? Transportation planner. Transportation planner for like a a OK, it’s kind of a logistical job which has probably made you really good in your paperwork. Actually. The part of it that I really enjoyed the most was getting communities involved in helping to make decisions about transportation infrastructure.

The idea of, of community voices and community needs rather than simply engineering prerogatives should be the basis for public investment. And that’s what I enjoyed most. Getting communities to help shape themselves in and, and reflect what their needs were. That’s a big thing. I mean, I think about that in Atlanta, like we needed, we need some good community transportation planners down here because we’ve been growing and growing since I’ve lived here. But I’m going to turn my husband on to your, the podcast you mentioned, because history is definitely his, his thing.

Oh well it’s just so lucid. She’s absolutely terrific. OK, good. We’re always looking for a good podcast. Is there anything you would invent? I’m not very good at at inventing things. That’s OK. What would I invent? I mean, you mentioned the cure for autism, so if you put that in there, yeah, yeah, we could certainly kind of make, make a case for that. I didn’t invent, I didn’t invent a compassion pill. That’s what I would do. Interesting. If we could give people a little dose of compassion, it would make the world a lot better place.

Do you think that’s the sign of the political times and things, or is there, has it, have you come across that in other ways where you feel like people are lacking? I think it’s particularly apparent now in, in our current political environment, but I’ve felt it more generally. You know, in the last 30 or 40 years when I’ve been actively involved in my brother’s life and advocating for him, I find some of the callousness about the needs of people who are neurologically divergent or with, you know, different abilities.

just pretty stunning. I think it’s shameful that we invest so little in caring for people who have such great needs. Compassion pill. Yeah, certainly. Let’s, yeah, that, that sounds like a good idea. What’s the last new thing you’ve tried? Hm. Oh well, it’s real cold up here in New Hampshire and I have been spoiled by spending some time in winter out in Arizona. So in order to keep up my healthy, active me, I have started to do what I call big box walking. So instead of going around, what, what I usually do is go out in my neighborhood and walk for an hour all around, but it’s just too blasted cold right now.

So I have been going to my local low. Lowe’s. In fact, this morning after I had breakfast with one of my sisters, I marched over to Lowe’s and did half an hour, 1.5 mile of my walking. The staff would ring and say, Ma’am, can I help you find something? I say, No, just getting in my steps. So I’ve been doing big box walking. Do you always go to the same store? Do you kind of use it? I, I vary it. So far I’ve done Lowe’s, Home Depot, and Sam’s Club.

I thought about doing other places like a big, a big. Grocery store or something, but then there are all those carts and everything else, and I started out doing it in a very sort of systematic way up and down. And after a few days of that, I said, Now wait, mix it up. So now I go from the tool crib to the paint department to the doors to the lumber section to the refrigerators to the Christmas decorations. Oh my gosh, you’re gonna be, they’re gonna be hiring you to be a greeter and a volunteer to help.

You’re gonna know where everything is 14B. But what a, what an amazing thing that was that something you learned about or you just were like, no, I gotta find it. I just said I can’t stand the cold and I don’t want it to deter me from getting my exercise. So I thought, where can I go? There used to be a big mall here which is closed, and people all the time in the winter would go do mall walking. So I said, what’s the alternative mall walking? Big box store.

Big box store walking. Big box walking. You, you’ve heard it here, folks. Cathy is inventing it and you’re gonna start a new trend in the Northeast and beyond where people need to, yeah. But what I love about it is like no excuses. It would be really easy to just be like, oh, it’s too cold today. I’m just not gonna go. But too cold today is, is, is a whole season. Yeah, yeah. And I, I, do you incorporate any weights into what you’re doing? I’ve just did a podcast on scar scarcopenia and, and how we as older adults need to, um, uh, and, and starting in our thirties, how we lose muscle mass.

So you might want to, maybe you need some ankle weights or some hand weights with that. Uh, I love weightlifting. I started that. When I decided that I needed to outlive my brother, that’s when I got seriously into it, and I’ve got to tell you, weightlifting just makes me feel like a million bucks. It is so, I think it’s physically empowering and it’s emotionally empowering. Well, you were gonna like this. There’s a podcast that It’s not out yet, but it’s going to be out before yours is out with Eric Levitan.

He is the creator of an online Zoom strength training program called Vivo Fitness, um, particularly for older adults, and encourages them to work out with their siblings, with their parents, with everybody to, to help make that kind of, you know, nothing replaces the in-person, but for some people that is a a Really hard thing to do. So I’ll link to that previous show too, so people can check that out. And you know, there’s also a lot going on in chair yoga, and I know that’s done like here in continuing care communities and senior facilities.

A lot of emphasis on that. And you can get some good workouts doing things like chair and, you know, stuff at home with just pushing against the wall. Amazing. Yeah, there’s a lot, a lot of options out there for folks. Any parting words of wisdom from you, Kathy, for caregivers? And how do people, how do people reach out to you? I know we’ve got the autismbrainnet. org, but is there a way, um, through LinkedIn or something that people could reach out to you as well? I’d be happy to give you some contact information.

And I’ll give you an email address. I think that probably would be the best. I try to steer away from a lot of the social networking stuff just because it can be overwhelming. So, and I’m kind of a private person, but I would be more, more than happy to give you an email address where people could reach out to me, and I would be happy. People can connect to me and I can connect them to you. That, that works for me. Um, well, any, any party wisdoms for caregivers, I guess I would say love the Eddies of this world and be good to them.

Be kind to your and forgiving to yourself, and think about brain donation, a priceless gift that will keep your loved one in your heart and in the world for decades. To come. Well, you’ve inspired me and when this episode comes out, I’m going to share it with my siblings, Kathy, to see if we are all can get on the same page about looking into donating Tom’s brain. I’m sure that that would be very interesting brain tissue for people to explore. It would be, um, yeah, everything it’s it’s kind of like with one person with dementia, you met one person with autism, you’ve met one person with autism.

Like they’re just so unique individuals. Absolutely. Yes, it’s a price gift, priceless gift. Well, you have been a gift to talk to today, Kathy, and I really appreciate you carving out the time in your day. Applaud you for the work that you did and the care that you’ve given, the priceless care that you gave to your brother and how you’ve made this great decision to have his brain and his legacy live on. So thank you so much. Thank you, Elizabeth, and, and I appreciate so much what You do not only for your brother and your family, but for those of us in that almost 65 million of us unpaid family caregivers.

Your work is just a tremendous help to us. Thank you. Thank you. That means a lot. Those are like little tiny tips in my tip jar. So I appreciate that, Cathy. Thank you so much. Bye-bye. Hello, podcast listener. If you’re caring for a loved one with Alzheimer’s or dementia, you don’t want to miss All Authors podcast, Untangling Alzheimer’s and dementia. I’m your host, Mary Anne Chuuco, a registered nurse, author, and dementia daughter. In each episode, I interview one of our 300+ authors about their personal dementia story and why they chose to write about it, sharing intimate details and painfully obtained knowledge to help you on Your own journey.

We share a variety of stories across all diagnoses and from a range of caregiving experiences. You can find us on your favorite podcast platform and the Whole Care Network. Remember, you are not alone. One can sing a lonely song, but we chose to form a choir and create harmony. Find us at allsauthors.com. See you soon. Thanks for listening to the Happy Healthy Caregiver podcast on the Whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at happyhealthy Caregiver.com.

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com to join. Until our next episode, I’m Elizabeth Miller with a reminder to take care of you. Are you still here? Well, it’s time for the disclaimer. I am not a medical, legal, or financial professional, and I am not providing medical, financial, or legal advice. If you have questions related to these topics, please seek a qualifier. Professional. I have taken care to spotlight family caregivers and experts, but their opinions are theirs alone. This podcast is copyrighted and no part can be reproduced without the written permission of Happy Healthy Caregiver LLC.

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