Boosting Joy: A Conversation with Eunice Sykes

What about when you are lucky enough to find love the second time around? Everything is going great, swimmingly well. A blended family they all get along. Or the people that don't get along at least stay away from each other Enough for the two of you to get on the good foot, the sugar foot. You know what I'm saying. You traveling, you golfing, you loving on each other, your friends like each other, and then retirement you swinging with it, and I don't mean swinging like what you're doing sexually. Don't stop. Don't stop doing all of that. You're having a great time and then a few weird things happen, Something more than age, and you notice that your boo, this person that makes your life and your world really work, ain't quite right. What you gonna do about it? Do you pass it off, as maybe this is just a bit of senility, or do you really go to the doctor? Lean in, let's figure out and find out what you're missing? Alright, Come on. Come on, it's gonna be worth it. Parenting up caregiving adventures with comedian Daysmiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler alert I started comedy because this shit is so heavy, so be ready for the jokes. Caregiver newbies, OGs and village members just willing to prop up a caregiver. You are in the right place. Hi, this is Zeddy, I hope you enjoy my torsors podcast you okay? Boosting Joy a conversation with unit Sykes. Our parenting up community is growing so fast I can't put out a episode as fast as we're growing. So text podcast to 404-737-1449 for updates, exclusives and suggestions on topics. While you're at it, share an episode with a caregiver you love. Review on Apple Podcast and follow us on social media. Subscribe to our YouTube page, please. It really helps. Welcome Eunice to the Parenting Up podcast. It was such a pleasure to meet you. We actually met at a function AARP and Alzheimer's Association of Georgia. We were at the function and I was the host. I was wearing a dual hat, I was a caregiver and a comedian that day, and you and I spoke a few times. We had a few words and then you were kind enough to let me get a copy of your book. You autographed it for me and now you are being a guest here. I'm not a family, though. After having your book, reading it and you being a having a conversation here with me, I'm like no, no, no, now your family. And what I really appreciate about your book is how much it reads and feels like I'm going through a memory album of a cousin or an auntie or something you know, like a photo album, journal, rather than a book that I grabbed off of a shelf of a bookstore. So Parenting Up family. I want you all to know that Eunice Sykes went out of her way, I believe, to open up her heart and share some very intimate details around her journey as a caregiver for her husband. Don, let me know what made you decide not only to give a book but to give us pictures and so many snapshots of the nitty gritty.

Well, the title of the book is Boosting Joy and of course, we've had Don and I over 26 years. We've had a wonderful marriage, a wonderful relationship, a joyful time together. I often say he was the best husband I ever had and certainly the snapshots of our lives during my caregiving with him illustrate that we had some wonderful moments. We had some down moments. I questioned what hope was. I didn't know what hope was because I was in this disastrous terminating kind of role, watching my husband turn into someone that I didn't know. And yet it was a boosting joy affair and I wanted to share with others who were going through that it doesn't have to be all doom and gloom, that you can capture some moments that you will relive forever. I still relive many of those moments and I smile. In fact, there was a Facebook memory that posted yesterday on my Facebook page and it was Don and I going to a jazz club having a date night. Keeping it real that's what I called it date night keeping it real and it's he and I in a darkened jazz venue just having a great time, and he had Alzheimer's then. And so I want folk to know that there are some joyful moments along this journey. You have to often find them, sometimes you have to create them, sometimes your loved ones will create them, and those are the joyful moments that will boost you forward and keep you going.

Thank you so much for that. I want to back up a little bit and say you all were married when he was diagnosed. What was it that was happening, what was going on that let you know? Or let your husband know? Okay, you know what. Something's happening. We got to go to the doctor. This is not a normal part of aging where he just can't, you know, tie his shoe or he can't find his wallet.

Right right. Well, a number of things were happening that we initially excused, for example, my husband. When he was driving early on in this journey, he would get out on the county roads and he would pull in the traffic and then he would take his foot off the accelerator and then oftentimes he would accelerate and he was slow down and when he got to a four-way intersection, for example, and was going to turn, turn left, he'd be over in the right hand lane trying to turn left. Of course I was white knuckled all the way when I was riding with him, but who knows how many times he did this on his own, trying to maneuver the traffic. So maneuvering traffic was one incident. Another incident was he did not recognize things that he should have recognized. For example, there was one occasion when he was eating in our little eating area and I said you know he was having a salad, and I said well, there's a tomato in there on the counter. Maybe you want to put some tomatoes in your salad. And so he got up and he went into the kitchen and he couldn't find the tomato. And you know, he was in there the second or two too long. So I got up and I went in there and I said what's wrong, babe? And he said you said there was a tomato in here. I said yes, and he said, well, I don't see it. And the tomato was in clear sight on the counter to his right and he did not see that, so he was not processing as he should. That was not a memory issue, that was a processing issue. I think the the incident that really triggered me that something was wrong, because who knows how long Don was going through these I call them episodes about himself trying to figure them out. And I know that he was trying to figure them out We'll talk about that a little later. But the incident that triggered me. We were having a conversation. I was at the kitchen sink and he was in the master bedroom and we were talking back and forth and he came around the corner, out in clear view, and in the midst of that conversation he lost all his vocabulary and, instead of responding to what I said, he went into a bug, bug, bug, bug, bug, bug kind of spill. He had no language from which to capture and say what he wanted to say. That triggered me and I said I don't understand why you didn't respond. What's going?

on how old was he at this time? About. How old was he?

Don was probably in his early 70s. He had been very active all his life. My husband was an athlete golfer. He was a music closet musician. I call him a closet musician. He played the soprano saxophone, introduced me to the game of golf, walked every day Exercise, went to the gym the perfect picture of health. He was an electronic engineer by trade and by degree, and electrical engineer. We were having a normal retirement life. I had not quite retired, I had left the workforce, but he was retired. My husband was retired probably eight or ten years before I was. We were just having a great time and then all of a sudden, these things.

I saw the pictures and all I could think when I was looking at the pictures was why didn't I run into them in some of these places? Because, as we say where I'm from, y'all were putting on a show, putting on the dog. It was pictures of airline tickets and luggage. Y'all were at parties. Y'all were in fancy cars and fancy clothes. I was like, okay, you and this, and that Y'all were getting it in. I'm gonna tell you what. You all did not leave any stones unturned. So why I am? I know you would prefer for him to be here on earth with you. It is certain that you all had a very good time on your, the time that you all did share, and that is one of the things that I am hopeful that anyone who puts their hands on your book boosting joy, they're able to see that, even after the diagnosis, y'all kept it moving. I mean, you all kept moving, and that's my the next thing I want to ask you about how were you able to champion that was it? Was it mostly you're doing, was it Don's doing? And say, okay, we got this diagnosis, we are not about to shrivel up in the corner, we're gonna keep going out. You mentioned that Facebook post was of you going out on the date night after his diagnosis, but to keep that active and to remain alive and living. What did that take? How did you do it? Whose idea was it?

I think it was both of our ideas. Don was a funny man. He was a jokester, he loved having fun, he loved being in company of others. We took three cruises before he went in two cruises and to went to a jazz vest shortly before he went into assisted living. We knew that that was on the horizon when I was in my care partner role early on, we talked about a lot of things about what was to come after the diagnosis. We both admitted that it was going to be terminal, but we wanted to live our best lives better. That's the way I put it living our best lives better. And so, while he could and while he was able, we did that. Now we we went on a cruise and I'm telling you I had some very challenging moments, but we did that cruise and we would have went to the Bahamas on a cruise. I went to Alaska with some of our golfing buddies on a cruise and then we went to the Panama City Jazz Fest. Because he loved music, loved music. He loved playing it, love listening to it. He has all kinds of jazz videos showing you how to do this and how to do it. He was a constant learner. I enjoyed that about him. You know he wasn't giving up he was fighting, he was gonna fight it, and that's amazing.

That's amazing and I think that makes a very big difference. I've noticed that with my mother, like we're I mean we're in year 12 with my mom and she recently had a stroke wow, about six months ago, and then about one month ago she had two seizures and this lady just keeps fighting. It gives me the courage and the energy to fight for her and for myself. You know, when I'm having a bad mood or when things don't go quite right with you, the IRS, or with a man I thought I was gonna date, that I decided I should not date either way, I'm thinking what hell, if she can fight through a stroke and two seizures on top of Alzheimer's, wow, I can probably Finish my taxes. You know, I can probably go ahead and Get this joke written. You know, get this podcast up and out the, because if she's doing all of that Wow brain is trying to fail her. Let me Put, put my, my butt in gear and keep it moving. You know, that's, that's, that's the least I can do, actually, also in her honor, right, I'm her kid and Let me live in a way that honors how she is choosing to fight, because this is a choice, her spirit is in there and she's fighting, and so let me, let me be a fighter too. Shit, I let's let her be proud of me in the way I'm Going about this, this thing called life and she is something else that I noticed about your Book is that you start out saying I'm scared. I'm starting this journal, I'm starting this journey. Again, I like I'm sharing with the viewers and the listeners. It's very much a journal, these pictures. I Appreciate that you change the script, like there is, it's an italics and then it's in standard text. It's for you to people to be able to tell, I believe, when you're given Almost exact words versus your opinion and your thoughts. I'm appreciating that the pictures are in color. I was like, oh, this is fancy and and it's nice, nice font size, so people should be able to really read it easily. Well, you take us through the diet, the pre diagnosis. Oh, go ahead.

I just wanted to explain that I Kept. I've been a writer just about all my life and so writing for me is cathartic and it's also a learning lesson, it's an education. And so I kept notes In a journal what was happening, how I was reacting. Was that a good reaction or should I change? Should I get me out of the way? There are so many times and I was in the way and I was. I was blocking my joy, and so the italics Come straight from my journal entries, that stuff that I wrote down in the moment. And then, of course, the Regular text is what was happening and how I was organizing and telling the book. Some of the italics were Don statement verbatim. You know, at one point he said I think I'd rather have cancer or have a limb cut off than to have All timers. When he didn't feel that way early on because he thought he could beat this disease, he was in a very positive mood of trying to beat this disease. My husband offered to do a clinical trial. Of course he wants to do a clinical trial. I'll do the clinical trial with him because you loved one. Someone has to be along 24, seven when you're doing a clinical trial. Very, very free, emptive about what to do and how to do it. And I mean, he was a fighter, he wanted to live, he wanted to live. He didn't want this disease to overcome him, and of course it is.

Yes, you are. You take us in the book. You take us through pre-diagnosis, through his transition. Did you all actually discuss and plan in Whether or not hospice and assisted living would would be a part of his journey prior to His cognitive decline?

Yeah, what I was care partnering and not caregiving. Done took the initiative to say we need to go San attorney, we need to get that paperwork in order. I, I, he said I want to do a clinical trial. He said when I get to the stage where you can no longer take care of me, I want to go somewhere where I can get 24 seven care. He specified we're kind of caregiver. He wanted and All of that and so From my perspective he was very helpful to me in making those decisions. I didn't have to make them, thinking that it would be okay, because when he was still in reasonable Cognitive shape we had those discussions. I was shocked that he would want to do a clinical trial here already reached research that and you know, I don't know that it prolonged his life, who knows. But it was something that he wanted to do. In addition, he wanted to do that so that he can Contribute. He wanted to contribute to the science of people of color, because those statistics are as Large as the statistics for the general population. You know things that affect us that mainly to cognitive decline, like that needy, these hard problems, those things High cholesterol, those things are Are in a greater percentage For those of us that are in the communities of color. So he wanted to contribute to that body of knowledge as well.

He is. So I Say, is because I I believe that our loved ones remain with us. So I'm saying he is so thoughtful, so intentional I'd, so I have you remember, I'm a comedian. I have to ask Do you all have a son that happens to be unwed? Listen, honey, I need a man that might have some dawn in him. And I'm not playing. And if your husband and if your son is married, you just keep my number if he gets unmarried, we were a blended family.

All the kids were grown and out of the house. So I have a son and two daughters and he has a son and two daughters, and they were rarely part of our family unit because they had their own lives and they were grown when we, when we, married. But We've had some good times.

I I see what you mean by the best husband you ever had, because you got experienced. There was one before him. Well, you can say with all honesty he is the best.

And my, my children know that too, because my children have their own father and they know as well that, you know, I say it's nothing wrong with the truth, honey.

It is nothing wrong with the truth. It is nothing wrong with the truth. You also share with us how the pandemic, the pandemic of 2019, 2020, with the COVID-19, covid-19 that came around in 2020 how that impacted you. You, when I yo, I'm telling y'all bad enough. Family, when I'm telling you Eunice lays it down, especially for those who were Caring for a spouse. You even talk about how to move on. What do you do? The thought of dating? It is rare, honey. When I say rare, I mean rare, like a piece of beef that you just got from the butcher shop, rare, or someone to be willing to talk about that in a written form. I it's hard for me to get Someone like yourself to discuss it with me off Line, so to speak, let alone in a book. So first, again, kudos to you. Thank you for that awareness and that growth. Talk to us a little bit about what it was like just in coming to terms with Yep. I gotta go ahead and take this step and I want to tell the world about it.

Yeah, two things. First of all, I I consider it moving forward. When a loved one dies, I consider that you move forward. You don't move on because you got that with you, so you're moving forward. And and the second thing is, when you're in an Alzheimer's journey with a loved one, you grieve every day Because you see your loved one losing more and more of themselves to this disease and you're often not recognizing your loved one, so you're grieving through the journey. And Then, when the journey transitions when, when Don passed, covid hit Don passed in May of 2019. Covid was right there with us in March of 2020. I Was right in the midst of post transition grief. I Couldn't hug anybody, I had to wear mask, I couldn't have my children around me, I Couldn't go anywhere. That was tough. That was very tough. On the one hand, I feel like I was blessed that Don passed in May of 2019, because to have had him With me here on earth through Covid, that would have been a whole new journey. Because, as you know, long-term facilities shut down. Love ones weren't allowed to go see their loved loved ones. You know, they had windows and partitions in front of them. They had to wear mask. And when you're in a in a dementia kind of state that all hinders everything Because your loved one can't see you. So I feel like I was blessed that he passed before Covid hit. But then I was left to deal with my grief by myself and that was tough. I would hug myself at Night. I'm a yoga Practitioner. I have been for years and I would do some of the yoga poses. I think I described them in here, and one of them is to Put your right arm over your left shoulder, left arm over your right and hug yourself. That's a hug. I talk about that when I do my sessions. That's a hug, and those were the only hugs that I could get and they felt so good. They brought me to tears. They still bring tears.

Um hold on you this way. You can't go past self-hugging so quickly on the parenting up podcast. I mean you can't just fly by that. I mean that is so powerful that, Okay, let me. Let me back up a little bit. Where did you grow up? I?

grew up in in the, in Western Pennsylvania and in West Virginia, northern West Virginia. In Northern West Virginia, the state of West Virginia is shaped like a frying pan, and the handle of the frying pan Sets between Ohio and Pennsylvania, and so Pittsburgh was 30 miles east of us, so I could be in three states within. That's Okay.

That's where I grew up well, let me just say that it being a practitioner of yoga for years, growing up in Any part of West Virginia or any part of Western Pennsylvania, and then finding yourself in any part of Georgia, a Woman of color, and practicing yoga enough to then lean on it during the pandemic and having the comfort to hug yourself into a state of comfort that brings about tears is there, I say, miraculous and heaven sent, and A preparation of a spirituality that not only did you need, but I believe that will be very useful To many others that here and view this podcast episode because, as simple as it sounds, the magnitude of the power because we will always be with ourselves and, yes, the more we learn how to care for ourselves, but better that's. The only. The only person you're guaranteed to be with every day for the rest of your life is you, and so, when you can have those type of tools, yeah, yes, go ahead.

I might add that the yoga studios and the gyms they were all closed to during COVID, and so I took two online sessions and I practiced yoga just about every day, and so the online sessions were helpful to me, just knowing that there were other people out there in the class and that the instructor was Sensing what we needed and gave it to us, and so I mean, it was a very it could have been a very isolating time, but I reached out by way of the virtual Environment and that was very helpful to me. I still I go, actually go to the yoga classes these days, these days, but I still do that hug Because I'm trying to magnificent trying, I think, that hug still Magnificent.

A few times you have made the distinction between caregiver and care partner and. I would like you to Going to a bit more detail, for those who may not understand.

Okay, okay, okay. I think there's a definite distinction between a care partner and a caregiver. The care partner Part of it comes early in the disease, probably before the disease is diagnosed, and into some of the early stages of the disease, when you and your loved one can have these conversations about what's going to happen going forward and what are some of the options. Going forward, and my husband had, I believe he knew that he had Alzheimer's, he had dementia, I believe, before he was diagnosed, because after the diagnosis he would give me all of these articles from John Hopkins, no papers, white papers from, you know, the the major hospitals, minnesota, the Mayo Clinic. He would. He gave me all of that when we got the diagnosis and he felt assured that I was not going to leave him, that we were going to go through this together. He gave me all of the resources that he had gathered up and they were quite a few. So that's why I believe he knew that this is, this was coming. And and when I said to him when we had that Boba, boba, boba day, we need to find out from the doctor what this is all about and if you don't mind, I'll go with you, yes, and he didn't give me any flak about that, and that's kind of when we started With this diagnosis, and so that part of the journey was absolutely care partnering. But when Don started losing his cognitive abilities, when he needed a partner to go through the clinical trials, to do the paperwork, to answer the questions, when we saw the psychiatrist, the social worker, whoever we were visiting, then I became his caregiver, because one of the first things that happened to my husband was he lost his ability to speak. That's what that? He lost his ability to speak, and so one of the first members of our medical team was a speech therapist, and she is the one that made it clear to me that my husband Was having a processing issue. It was not a memory issue, and I thank her well to this day. Yeah, well thank you. So you know, and from that point on I was a caregiver, I Got you.

Wow, this has been such a powerful conversation with you, eunice it you have such a dynamic viewpoint of how to you and on had such a dynamic way of managing a tough diagnosis, managing it with grace and and community. It's a pleasure From my perspective to have met you, to have been exposed to your book, to know your husband through you. I am grateful that the parenting up community now knows about you, about him. Before we wrap it up, is there maybe One moment or one story or one incident that you remember that kind of makes you chuckle or Did you consider humorous that occurred after his diagnosis?

Yeah, I have a couple of them. One of the things that I Did as his caregiver I went to all of his medical appointments with him. He my husband was a veteran, so he had access to the VA services. We use the services of the Alzheimer's Association. We use the services of art. We reached out. When you get this kind of diagnosis, in my opinion, you need to learn all you can about the disease and you need to reach out to your support services and to tell you the truth. When I learned about this disease, I couldn't even spell dementia. I Couldn't spell it, I didn't know what it was.

But I have to Use. I have to tell you I was trying the way I spelled Alzheimer's honey, they would have put me back in first grade and dementia I was putting C's and H's in it.

Well, that takes me to my little, my little story that I want to share. We were in in a conversation With with one of his medical Practitioners, and she was asking him you know, the depression is very much a part of this disease, both in your loved one and in you, the caregiver and so she was asking Donna series of questions to try to determine if he was depressed. And so when she was asking him and he was, he was reciting his, his responses. I was kind of doing down my responses too. And so she said to him she said Well, it looks like, you know, there there might be some depression going on here. And he said yeah, she's got some too. He was pointing to me. He said yeah, I believe she's got some too. I said I do, we both need some help. But my husband sent a humor, you know, while it was there. It was there, you know. He said to me at one time he did not want a woman caregiver, and when we put him into assisted living, he had numerous caregivers but his preference was to have a male caregiver. And so One of the things that happened that they the staff shared this with me and I cracked up. They said I'm miss so-and-so went in this morning at six o'clock to give your husband a bath and he swung at her and I had to hold. I had to hold the laughter back and I said, because I had already told them what kind of caregiver he wanted. And and so I said, did he hurt her? He said no, she ducked. I said well, good for her, she had no business going in there to get him up at six o'clock first of all in the morning, but what's taking sure, six o'clock in the morning?

Nobody and listen, he wasn't going to work. I try to tell the caregivers with my mom all the time they want to put her on a good schedule. A good schedule for horn. Yes, we go.

They want to put on their schedule. That's right. That's right and that's what this caregiver was this paid caregiver was doing. She was wanting to give him his shower so she can get to the others. Well, you know, nobody wants them to be touched like that any kind of way. I don't want to touch any kind of way at six o'clock anymore. I want to roll over. And when she talked it out of the lab I said well, that's what y'all get. I told you he wanted a male caregiver and you don't give him a shower on your schedule. If he wants to take a shower at two o'clock in the afternoon, that's when you need to give him his shower. That was a funny moment that I chuckled about.

I love you.

Apologize, but he did swing out.

Well, that you know what. That's their fault. That's their fault. That's their fault. He said look, he said what he said you can talk without words and Don did. Don talked without words and I love it. I love it Well. Thank you so much, eunice. This has been such a wonderful conversation. Let the parenting up community know where they can get your book and how they can stay in touch with you.

Okay, so for now my website is down for repairs, but you can buy the book out on Amazon at Barnes and Nobles. You can order it from me and save shipping and handling those of you that are in the Atlanta market. If you can just reach out to me by way of my email address or Facebook I'm on Facebook I can get you a book and save you some shipping and handling costs. The book comes in a hardback. This is the hardback version. It also comes in a paperback version and I enjoyed writing it and I feel Don's spirit every time I talk about it. Thank you so much. I hope the book is better comfort for you as well.

It has, it really has. It's comforting. Whenever I share the spirit of caregiving with another, the tagline of the parenting up community is Alzheimer's is heavy, but we ain't gotta be. And whenever I lock spirits with another caregiver, it's uplifting. And so your book did just that, and this conversation has reinforced it that much more. So thank you so much.

Good Thank you. Thank you, that's my hope. If somebody has helped, I'm pleased, and thank you for having me Hope to see you again soon.

Well, you should be pleased sweetheart, let's snuggle up. Number one care partner and caregiver it's not the same y'all. Care partner is when your LL still has enough cognitive function and ability to help, you think, to be involved with planning his or her life. They can help. But caregiver is what the hell I'm doing with Eddie? She ain't helping me at all. She loves me a lot in her spirit, but that's the difference. So keep that in mind. Care partner is in the beginning maybe really really mild, but they are not a caregiver, all right. Number two make intentional memories with your LL. I know it can be sad, it can be scary, it can just be pissed off that this disease, whatever the disease is in my case it's Alzheimer's, it might be cancer, maybe it's FTD, but Eunice and Don made such specific memories they chose to look Alzheimer's right in the face and say you know what, middle finger up. I'm not going to put the middle finger up, but middle finger up. We still going dancing, we going to the jazz club, we going to play golf, as long as we can. And so now she has pictures, she has video, she still has social media posts that pop up and remind her of those times where they battled and they fought and that can help. That'll help you down the road. It'll help you later. It will help your loved ones, after you aren't here as a caregiver, to know that battling and fighting is what we do in our lineage. We'll give up Hell no, just your LO to be frustrated and mad sometimes. Eunice said that there were times when Don said what the F is happening to me? Who am I? What is this going on? Can you imagine how many times he might have been thinking and feeling that, but he just didn't say it and we can tell that our LO is a little off or a little shaky. Wow, what might they be feeling on the inside? Give them grace, give them a pass, like pretty much every day, all the time. Just give them grace and give them a pass, because they are fighting literally every moment, every second, trying to understand why is this happening. How can I communicate what I'm thinking, what I'm feeling? It sucks. It sucks way more to be them than to be their caregiver or care partner. You know what I'm saying. What's up? Family? Share this episode right here with a caregiver you love. Review on Apple Podcasts. Follow us on social media and please subscribe to our YouTube channel.