Captivate Podcast: The Unseen Side of Caregiving: Advocacy After Loss with Dr. George Ackerman | EP042

Welcome everyone. I'm excited today to have as my guest, George Ackerman, who wears a lot of hats. He's a very multi talented, multi occupied person who also has time, a lot of time, dedicates himself to finding a cure for Parkinson's. So George, I want to welcome you to the program. Would you like to say a few words about yourself? Yeah,

Dr. George Ackerman: I want to thank you and your audience for the time. I was excited to have this discussion. Anytime I can help advocate for a cure, it's really means the world to me and so many battling the disease, but also in memory and fortune of those we've lost, like my mother due to Parkinson's disease. A little bit about myself. I'm a police officer and lawyer in Florida. My PhD is in criminal justice, and I'm an author. I've published several books lately on Parkinson's disease, just for awareness, all the money donated directly to different organizations like the Michael J Fox Foundation, and I found that some topics maybe we'll get to, that aren't being touched on, that I thought were very critical. So that's why we did that, and we made we started together for sharon.com and memory of my mother. I was hoping to get two or three people to see it about six years ago, but we've had over 40,000 visits. So I don't know if that's because of the work we're all doing, or unfortunately, the disease is growing and more people being diagnosed daily.

I remember when I was growing up, we didn't hear the term very often. You know, I'm talking about the 50s and 60s, but it's only more recently, you're right, that that it has come up. Would you like to tell us a bit about your mom, how all this started?

Dr. George Ackerman: Yeah, my mother was my best friend even now almost six years later, it's not always easy to talk about but I do this because she had Parkinson's for 15 years. But she passed very young, in my opinion, at 69 and I feel like she lost 15 years of her life alive with Parkinson's, and then 15 likely after she passed due to Parkinson, so I didn't want her to be forgotten. So that's why we started the website. And unfortunately, you know, I thought we some days it's hard because, as you know, in any disease, you advocate, and sometimes I don't sleep just posting on social media or just trying to reach one person a day to change the world. But then I see a story a few weeks ago. Currently, we have 1.2 about million people in the US, which isn't a lot, unless it happens to affect you, and then 10 million people around the world. But there was a statistic and a news story which was shocking, that said in about 15 to 20 years, it's going to go from 1 million people to 20 million. So some days I feel like I'm not doing enough or not doing the right thing. But I feel that through your show and all your viewers, the main goal is that no one is ever alone in this fight. I felt alone. We didn't know all your incredible people like yourself and your audience were out there at the time, I was so busy trying to care for my mother, it couldn't even take a minute to breathe. And then also, my mother didn't even meet someone, shockingly, who had Parkinson's. So we really did feel alone.

That's really a stunning story, and I know that a lot more people are going through it. Now, all the 20 million seems like a huge escalation to me. I can't even fathom how fast things are changing on that before all this happened, what was the main focus of your life?

Dr. George Ackerman: I think family, work again, I actually went to law enforcement and to be a lawyer, because I advocated for victims and specifically family members who lost a loved one due to crime. And my dissertation on my PhD was aiding African American mothers in South Florida who lost a loved one due to murder, because a lot of time, obviously, sadly, we lose a loved one, but then the families become secondary victims, and I kind of correlate that to the Parkinson's community, because it's not enough awareness, and sometimes they're also forgotten by society. And that's why I decided, when my mother went through this, that I would kind of switch my whole life towards advocacy. But this is certain point I'm finding now, six years later, you get to a point which we discussed earlier, where you kind of don't know what else is left, you know, I've kind of did the website, I've done books, we've done speeches, I've done podcasts, but it's kind of at the point where it's like, you can only, you know, you're kind of limited. So hopefully there's others out there that see this, and they start joining in and advocating too, because unless we have everybody in this family towards the cure, we'll be further from it.

Yeah, I can understand there's a little bit of frustration, because every day there's a new cause that needs help, and yet the one that you. Started with is, is the one that that's keeping keeping you passionate and keeping you focused. So

Dr. George Ackerman: the shocking thing, which is, again, not really here to plug poke something, but it just happened this, I wrote this just last year, and it's called an empty seat at the table. And why I wrote it is the frustration and struggles with awareness, like a lot of people, don't talk about the bad stuff or the negative side, because everyone we know we want to be positive. But doing this is not always easy. I say regular person may have given up or quit. I've had some weird stories and crazy tales that you wouldn't think because, number one, I don't have Parkinson's today. Number two, I'm no longer someone who's a caregiver, someone living with Parkinson so I'm in a weird category, in a way, not weird, but in reality, I'm a character, former caregiver, someone who had Parkinson's. And I was shocked to realize that lot of time I don't have a seat at the table a conversation. A lot of organizations and foundations are great, but there's really no division for people like me. So I feel, and my experience is, a lot of people, when they lose a loved one in Parkinson's, they not saying they move on, but they give back to their life. You know, they don't have to care anymore. I wish we had more for people like me, because I think we need everyone together to keep fighting. You know, why would you just kind of close a book and move on when we still have people battling? And I always think my kids and their kids, I don't want them to have to go through this too.

Yeah, we often talk about a a fifth stage or a sixth stage, depending on how we formulated of caregiving where a person is moving away from the direct experience of caring because their person is no longer here. But what happens during that transition? Because many people aren't sure where to go with that. So I respect that and and I have experienced it myself in a couple of caregiving situations where suddenly my hands were empty. I want to ask you, I remember that you just said how you had been an advocate for victims in your criminal justice career. Do you think there's something that prepares a caregiver, a family caregiver, best for entering that, that phase of life,

Yeah, it really contributes, I think, to the isolation of the caregiver as well. Because just listing all of those symptoms, you know, it's breathtaking how many different concerns you have to watch for, be alert to, and try to mitigate somehow, and taking care of another person at that level of intensity really cuts into your self care. Could you tell talk to me a little bit about how you handled that when you were caring for your mom your own self care?

You're so welcome. I really feel that caregivers are often isolated, and they need a community, not just during the process of caregiving, but after as well, because people who have not survived that the caregiving part don't really know how to be helpful sometimes. So so it is important for all of us to stick together. Could you tell me the top three things that you think a caregiver should be aware of, or should anticipate and plan for, if they're as they're entering caregiving for the first time, what would you recommend

Dr. George Ackerman: versus again? Immunity followed, you know, their own health. That's very, very important, because if you're not taking care of yourself, might not be able help others. The other one is really just, you know, research, if you can find the right people to support you, that's very important. The third is become an advocate too, even though you might not have time, if you are out there advocating, you might find somebody else going through the same thing. So two and three kind of are in hand in hand, and I know my mother wasn't doing well. I went to a little conference and got to learn a little bit, and saw there are people out there like us also walking, and you know, the walks, or the 5k runs. I'm not as healthy as I used to be due to a lot of back issues, but I used to love going to those events, because not only you raising funds for the cure for every disease or any disease, you're also a part of the community, and you're not alone to you know, after COVID, we're all so virtual, even today we are. I love it, but being there live is something even more special, and some of those events I will never forget,

yeah, there's a certain solidarity, I'm sure, in walking with other people who are walking the same path with you, who would be some of the important influences or forces in your life while you were being a caregiver, after after mom, who would some of the other people be?

Dr. George Ackerman: Yeah, I wrote in my book, and it's funny, because a lot of times I talk more about Parkinson than my mother, and I forgot about that I'm a caregiver because we never have time, but my wife and my children, I wouldn't have been able to publish books to advocate today or even be with you sitting here if it wasn't for their support, though they were big, plus my mother and my wife were best friends too. So that's not just rare, but important. And I always joke with my wife. Wife, and wrote about it in this book, which is behind me, but it's a son journey. And that's I picked this picture of my mother because that was when we danced in my wedding. And I think that was one of the my favorite memories of my life, besides when I met my wife and had three children. Because in that moment, in that dance, the mother and son dance, the Parkinson disease didn't exist and didn't matter, and I couldn't take those kind of memories from us. But think I was lucky to have my wife. You know, while I was helping my mother, I was running back and forth a lot and working, she would take care of the kids, and they all understood. And it's not an easy thing to do just yourself.

Yeah, it's a big impact on the family, although it's maybe only one person who's doing all that work, the rest of the family is waiting for you to come home, and that's often a big issue for for families during the caregiving sequence. Are there other people who helped you along the way? Well, how did you feel, for example, about the medical community? Did you did you get a lot of support or assistance or information that was helpful?

well, at least the look back gives you some peace, knowing that you did everything that you could. However, I know certain diseases leave a person feeling like a chemistry experiment, because we really don't know what works or why it works for one person and not for another. So that's often a big frustration in terms of caregiving and watching a person so dear to you suffering. So I remember when my dad was a physician, and when I was growing up, there were only a few diseases that he felt challenged by. Otherwise he felt like he could fight everything, and Parkinson's and cancer were were two of them. He if he had to say a patient was suffering from one of those, he would always say it in hush tones, and we knew in the family that meant there wasn't going to be much of an answer, and that was a long time ago. So we've come a long way with cancer, but it seems that Alzheimer's and Parkinson's and a few others are still great mysteries, and if, if the treatment they have doesn't work, they a lot of doctors lose interest in you, and that's when a caregiver is really challenged to to try to figure out what else to do. Did you find you met the. Yeah, hospital at home. Movement. It sounds like you tried to care for your mom at home for as long as possible. Did you have to do medical treatments at home at any point?

Dr. George Ackerman: Yeah, towards the last year, they started something new in Florida, and was actually long term hospice, which was not always the best, but it did bring real doctor, real nurses in to help. It had a 24 hour hotline if we had an emergency, which was great. Also, they would help refill medicines and kind of teach us a little. But the negative side is they don't allow or believe in physical therapy. And as you know, at least with the motor disorder movement disorders, the only thing someone has is hope. And when you take away physical therapy, they lose that and then it's too late. So that was a very tough thing for my mother to hear that they wouldn't help her anymore. Sometimes she couldn't physically do things, but as long as you have physical therapy, you can still try and feel a little better about yourself. But so it was like a win lose situation, and it was a very tough, probably the toughest year of my life, her last year. So, and I don't have a lot of great to say, also, the costs are ridiculous. Most people don't have long term disability because they don't realize they're going to be, you know, declared having Parkinson. So we had to pay a tremendous amount of money. She didn't really get to ever retire? She i We bought our brand new home. Thought she was gonna live on this little, beautiful, quiet Lake and see her grandkids grow up. But a year after that was it shouldn't even get to enjoy it so, and I'll never forget, and I had one of the hardest days also cleaning out our home, which never, no person should ever have to do that young, but so I remember throwing out five of those huge black contractor bags of medicines. It was like shocking that that was so much medicine in her house and she was taking. So even today, again, I doubt a lot of the people and what they prescribed, how much it was prescribed, and like you said, it seems a little bit like it was just a science experiment. Gone wrong.

Yeah, were there people along the way, during the care journey, who were inspirational to you, who helped you get through

Dr. George Ackerman: this, really just my wife again, that's it, because without her, I don't think I would have made it. She always would bring my mother loved again, being with the family, and even though my three kids were young and screaming and crying and shouting, we built a little room in her house. They're called the playroom, where we're really clean people and orderly. I was brought up like kind of semi military and police, so I am really, you know, strict and liked to have things, at least not chaos in the house. And we allowed that one room to be chaos just for fun. And she would just, you know, even when she was very sick in the wheelchair, we put her in the room with them, she would just watch them and smile. So that was really what got us through the toughest days. But not really, unfortunately, anyone that brings a different topic that's important. She didn't have a husband, so it was just really me and my brother, but we didn't really, he couldn't help her. So it was just me alone, and I'm a boy, man, and helping a female, even though it's my mother, is not always easy to bring the whole world of other challenges for another show, being a male caregiver, and a lot of male caregivers, there's an epidemic that they aren't either speaking out or stepping up. We didn't. We swore to her, and I'm glad that we didn't put her in a home. But there was days where I said to myself and my wife, we have to go look at a home, because I couldn't handle it, because with the delusions, hallucinations, towards the end, she was calling the police, she thought all the caregivers were harming her, so I had to install video cameras, because I believed everything she said. She's very honest. And my whole life, we always told each other the truth, and I didn't want her to be in trouble, but I knew if I put her in a home, I wouldn't be able to see or know anything, so I kept her home that I had to monitor things all the time. Thankfully, no one really harmed her at all. No one did. I did see one that neglected when she woke up, because she didn't sleep much, she called for help, and no one came. So we fired the person the next morning, there was again, like a revolving door where we had to keep looking for companies and people and just horrible. Every experience I had was just terrible again, till we met the great last two people. But again, it was like the last month. So she finally felt safe when they were with her. And she felt safe I could live and do my own thing, work and be at least seen for a moment in my book, a sun journey, I put literally the last year of her life and my caregiving by times and date stamp, and you'll hear the calls, or you'll read the calls that we had, and what I was thinking, it's almost like I had a journal the last year and I couldn't share it till I put this book together. Is I wanted people to know what it's like. Sometimes it's hard to read because you. Don't want to know what might be coming, but I thought it was important to put out there. Can you believe there's not a book? And I always challenge everyone to write me if I'm wrong, but as of today, for four or five years, there isn't one other book in the world. I'm talking about the whole world, from a son who lost his mother due to Parkinson's. This was needed, and that's why I wrote a lot of these books. I wrote one on police and Parkinson's, I'm a cop, and there's not enough, if anything, for understanding training to help awareness with police and Parkinson's. And again, each of these topics is a different show, but it's a movement disorder, so if someone has Parkinson's, they're pulled over by the police, and the police officer is unaware of what's going on, and this is the book police in the park within, but it's gonna end very bad, and that's what I'm hoping never happens. So sometimes in our society, you probably aware and everyone listening. There's just not enough attention. So something very, very bad happens, and then all of a sudden everyone listened, like examples autism and law enforcement. No one really understood autism or cared. And then all of a sudden, an officer in some state or city shot and killed someone with autism, and then they added the training for autism in every Academy and all different things. So it's a shame that I hope you know no one would park it that never has this, but they read this book, they'll be able to understand what to do and how to avoid some of those situations.

Dr. George Ackerman: Yeah, I'm on probably every single social media in existence, which I don't know how, because it's just me and but it's together for Sharon, it's spelled out together, F, O, R, S, H, A, R, o n.com. Everything again, is free on the side. One way to support us is if you go to store under books, you can purchase any of the books. And it's getting big on 40 and I'd rather close the whole shop down, stop this all and say there's a cure. But until then, we realize can't stop yet. Still have worked to still have people to reach. Just the other day, I received an email on Tiktok, which I never thought I'd be on, thanking me for all that I'm doing. And those are the kind of emails that keep me going, even though some days are tough, my own medical issues and I want to give up, but I, you know, appreciate today tomorrow, and I think together, the future is bright because of you the show and everyone listening. And I have a little statement I always say at the end of my show, we love you all. We support you. We care about a lot you and you never alone. I, along with your incredible guests, our incredible host here today will advocate for you, and together, I feel voices or some. Stronger now he's closed my show with him just getting started. Because although I'm not just getting started on those tough days like we just mentioned, where I feel like I've done enough, and I hit a ceiling, and I realized that maybe that's it. Then I meet you and all your listeners, and then maybe someone new just got diagnosed, and they feel alone, and then I realized that I can't stop because until there's a cure and everybody's doorsteps around the world, we still have to keep fighting together and always be side by side with everyone out there who needs some support. So I'm just again so grateful for your time and friendship and to all your listeners. We sent out love

that is so wonderful to hear, and I feel like we have a partnership here on both sides of the equation, that there are conditions that we need to take a closer look at and start putting some more energy behind resolving for people, and also we need to take better care of the caregivers themselves. So I want to thank you, George for being my guest. Today, we are going to put all of your links into the show notes so people will be able to find you, and I hope they will pay close attention to your books, which are tremendously helpful. So I'll close by asking you, if you have anything else you'd like to tell listeners before we end our interview today.

Dr. George Ackerman: Tell me that some days are tough. Others are even worse, but you have to keep your head up, cherish all the good moments. Don't fight with each other, because it's not worth it. Now I look back, we have a quick joke, funny story, but every Sunday, when we did get together with family, we would all argue, like, literally fight over what kind of food to eat. And it was like, I've been talking about fights like horrible screaming, and then it's like, now Sunday comes and it's silence and it's sad, and I actually miss those terrible arguments. So just like I said, always keep your head up, try to keep smiling and know that you're doing your best and that you're not alone. Because that's the how I felt, and I hope, through the books, through the advocacy. That's really what keeps us going. Also, if you go to together for shin.com scroll down on the main page, the little looks like a Christmas tree, but it's a LinkedIn. I mean, a tree link thing, but you click that, you'll be able to go to all my exact accounts on Facebook, Instagram, texts, everywhere, and I'll add you all right back, because again, we just have to keep if we even reach one person today, we might have changed our world for the better.

That's it, one person each day, and we might have a remarkable community of people who are thriving instead of wondering where the help is going to come from. So thank you so much, George for being my guest today. Thank you. See you soon. Bye, everyone.