Transcription

• Speaker #0

  Hi, listeners, and welcome to another episode of Unseen Heroes, a podcast by a caregiver for caregivers. My name is Aliette, and I was once my mother's caregiver. Today we have two best friends, Carla and Sharon. Now this is very special for me because I met Carla a year ago in New York after being invited to watch. the premiere of a documentary about Lewy body dementia, which was a disease that my mother had. And the title is Facing the Wind, in which Carla's story was one of two stories that were followed. And it was after I watched this documentary that I was both inspired and driven to create this podcast for caregivers. Carla, would you mind sharing with us a little bit about your caregiving journey?

• Speaker #1

  Hi, Elliot. Thank you for having me. Yeah, so I was a caregiver to my husband that had Lewy body dementia. The journey was eight years long. He was an operating room nurse, loved his job, loved caring for people. And then the tighter turn is where I took care of him. It was a journey that... Of course, no one expected. He was such a provider and turning that into caring for him was totally different. Different, you know, when I was used to him caring for me. He was, you know, he was the caregiver, even when there wasn't a need for caregiving. I was just totally who he was. And during that time, I had to learn to care for him in a way. I remember that he was an adult, but the parts of him still that was declining. And during that time also, I had also lost like 25 people in the midst of that. You know, my parents, my social media director, my first cousin, my aunts, you know, significant people that I leaned on. So I had to learn how to really hone into my faith. And just really be in tune and taking care of myself, self-care, which is, you know, it's hard to do that when you're caring for someone else. I survived. I'm still here, you know, and still on the journey of recovery, as you well know. So now, you know, I'm moving forward and helping others do the same.

• Speaker #0

  That is quite a journey right now.

• Speaker #1

  Oh, yeah. And actually, yesterday marks three years since his passing.

• Speaker #0

  Wow.

• Speaker #1

  Yeah. So today is a special day. We scheduled this. Yeah. It's like, okay, girl, you got this.

• Speaker #0

  It's like they're still around us.

• Speaker #1

  Oh, yeah.

• Speaker #0

  And so, Sharon, you are Carla's best friend.

• Speaker #2

  I am. One of the honored ones to be a best friend. Yes.

• Speaker #0

  And so, yes,

• Speaker #2

  I am.

• Speaker #0

  Tell us a little bit about yourself. So the listeners understand why the two of you are doing this podcast together.

• Speaker #2

  Gosh, there's so many parts of that. It's a big pie and we take slices from that pie, but me and Carla and. I kind of wrote my story about our friendship and our relationship and we've been friends 30 plus years and you know we're both successful business women um we're faith-based women we have so many things in common and as much as we love hard we fight hard too oh yeah we do we do love that we love that We're like two kangaroos. They got boxing matches. That is kind of our story as far as that is concerned. But through the thick and through the thin, no matter, even if we're not even speaking to each other, we're there for each other.

• Speaker #1

  Literally, we have been angry with one another, but something come up and we had to be there because no matter what,

• Speaker #2

  just got to go through.

• Speaker #0

  I love that about you too. And I know that people can't see you, but I just want to explain that you're also kind of wearing matching outfits. I think it's fantastic.

• Speaker #2

  You know what? I just realized. The twinsies. Yeah. But encouragement is awesome. Very important.

• Speaker #0

  So for people who are just joining us or this is the second podcast, just to give context, what I ask the guests to do is to take a prompt that I give them and they take 20 minutes where they sit and they just write. So this way we sort of dig into emotions as opposed to maybe having a larger scope of a caregiver's story. we are more, or at least I am more interested in connecting caregivers through the emotional experience, because I find that that experience has limitless boundaries. The prompt that I gave these two fantastic fighting kangaroos was the me that nobody sees. And I'm curious to hear, now, neither one of them have read or heard the other one's story. Everything on this podcast happens when you hear it so that we all live it together. So who would like to go first?

• Speaker #1

  I'll go first.

• Speaker #0

  Okay, Carla. So it's Carla reading.

• Speaker #1

  Nobody sees me. Why don't people see this is a painful and grueling journey? Is it because I show up smiling and I make it look so easy? I need help. I'm tired, scared. I don't understand what Lewy body dementia is. I'm agitated because I didn't have, I didn't have, it did not have to be this way. We could have done better. We could have had the house paid off. This fear is crippling. How will I take care of my husband? Who is going to look after me? Hope is a struggle. I'm ashamed because I can't fix this, but I'm not God. So how can I fix this? Why do I feel I have to keep a smile on my face? Why do I have to be the one to keep everyone up? I need encouragement too. I'm thankful for the people who have shown up. I am learning too, I am learning too much. I'm leaning too much on them. I don't want to be a burden on anyone. But with that, but with that thought, I'm left with angry thoughts because you don't call. You didn't call. Why can't you read my mind?

• Speaker #2

  You should have known what I needed.

• Speaker #1

  Don't tell me this dementia is a hard thing. Don't you know I'm already scared? Shut up. If you don't have anything good to say, all I need is a hug. I'm angry. My husband won't give me a hug. It's because he doesn't know who I am. Walking down the street wanting to take off running anywhere, but I cannot run. I might hurt myself. I haven't run for a few years. I feel like a little girl with no voice. I don't want to do this anymore. It's hard. I love one moment and I'm totally living in anger the next. You look at me like I have it all together, but I don't. But I don't want to tell anyone. I choose not to be angry at God, but I do question why you created love just to take it away. At the end of the day, I realized I was chosen for this journey. but I don't like it.

• Speaker #0

  That was powerful is an understatement. It was moving. And I think every caregiver out there can relate to every single one of your words.

• Speaker #1

  I tell you, you know. And I think about. You know, those was real. Those are my thoughts. You know, people, you're so strong. You're so strong. I was so tired of hearing that. You know, strength is overrated. You know, people really don't know. They're used to seeing the smile on your face. You didn't understand the blows that it takes on the body. I didn't understand the blows it takes on the body as I'm going through it now. I mean, when last summer I was, my doctor. insisted I go to emergency room because they thought I was having a heart attack. And I told them, I'm pretty sure it's grief. And on the phone, they couldn't find anything. You know, it was definitely grief. But I showed, I realized how I show up and I realized it's up to me to ask for help. It's up to me. And I have been in therapy, been in therapy long before. Patrick passed away because I knew it was too many things happening that I knew I definitely needed. I needed help. I knew I was going to need someone to lean, you know, because along with everything else, everyone else that passed away were people that I genuinely leaned on, my elders,

• Speaker #2

  you know.

• Speaker #1

  So it's it's it's a journey that, you know, is coming, but you really can't prepare for. You wake up day after day. And just say, hey, just let me get through this day. And then the next day comes. Let me get through this day.

• Speaker #0

  And one of the people you leaned on was your wonderful friend Sharon, who's sitting there, which is why I sort of asked the two of you if people are wondering why the friend, because caregivers don't go through this journey alone. There were people watching us, trying to help, trying to do their best while we are in that tunnel of survival.

• Speaker #1

  And so true. I mean, and even with that, because the pain can be so grueling, you do tend to forget who is there.

• Speaker #0

  Now,

• Speaker #1

  she moved herself in my house when we sold the first house when he got sick. She turned my whole garage. to a Macy's furniture store for the garage sale, you know, and her brain never turns off, but she was able to, you know, make sure we had food. She made sure, you know, but even with that, you get so consumed in your own self pain. You do be like, well, where is everybody? You're so much in pain. You don't even realize who is there.

• Speaker #0

  Yep.

• Speaker #2

  So, but I'm thankful for my sis.

• Speaker #0

  Sharon?

• Speaker #2

  We haven't picked up our kangaroo gloves in a while. Wow, I think I sent you a kangaroo video. You do it.

• Speaker #0

  All right. Will the next kangaroo please step up?

• Speaker #2

  All right. You know, writing about two amazing people in my life, you know, I want to encourage, I want to uplift to be able to tell you some of the stories that we encountered in our 20 plus years of marriage life together, but as well as friendship life. Our friendship started before the marriage. So let me just tell you a little bit our story of friendship, faith and staying. There are moments in life when you don't get to be a fixer and I'm a fixer. That's what I do. You give me your problem. I'm going to fix it and I'm going to take care of it. And it's gone away. So you don't get to be an expert. A lot of times, I don't even know. I didn't even know how to spell Lewy body, dementia, Alzheimer's. I didn't know how to do any of those things. And then I'm a great talker. Sometimes you just cannot be a talker. But one thing I am good at and. I get to be a friend. I'm efficient in love, intentional in presence, and wise to know my place and know your space. And that was really important for me and Carla's relationship through the journey she was going through, is to know my place and to know her space. I learned that lesson while I was walking through my own journey with the disease rooted in my own household and my husband's father, which was my father-in-law. had dementia and he lived with us and his health was declining. So while my father-in-law that was living with us and then my best friend was going through this journey kind of had two double whammies. One I was living in and one that I went to. So while my heart was already cracked open, life asked me to love someone else without fully understanding. what they were going through, but not knowing what I was going through. And that was my girl, Carla. She's my girl. She's my Carla. I own that relationship. She's my Carla. That kind of friendship doesn't come from, you know, convenience. It comes from consistency. It really is. We worked really hard on our relationship. We met through church. We met through her rollerblading through the neighborhood. She became my personal hairstylist. I thought it was just getting my hair done. But what I got was a sister. We grew together. We prayed together. We laughed together. Then one day Carla met her big chocolate drop, Prince Charming. She didn't settle for less. And that's one thing I loved about Carla. You know, she was beautiful. She was single. She was just, she had her stuff together, but she did not settle for less. That Mr. Patrick Prayer came in here, took her ballroom dancing. It was over. It was over. So I knew I was going to have to share her a little bit more, but I was fine to share with Patrick. Carla checked off every box with Patrick. The man. who checked them was all patch of prayer he was such a good man i i could go on for hours to talk about who he was as a person but he was like my big brother he was a solid man he was a good man he was really like a gentle king that knew how to take care of his queen and carlo was his queen we traveled together we went to uh the dr we went to cancun we went to jazz festivals we danced together We laughed together, we cried together, and we did a couple kangaroo hops, too, through all that time. There were some kangaroo hops. And don't ask, we can't even show you some of the pictures. You know, one eye might be a little bruised, the other one might be droopy, but we always came back together. We always still loved each other. We bickered hard, we loved hard. Life was good until it wasn't. Carla began noticing changes in Patrick. Not all at once, but enough time to pause. But he always still treated her as his queen. As a friend, I choose to listen without an opinion, just love. Carla became an advocate, a learner, a voice. She sought out answers, joined support groups, helped raise awareness for dementia in Alzheimer's research. We were so blessed. to celebrate their 20th anniversary through this journey. We would do some crazy things. We would walk in the neighborhood. So I would have my father-in-law, which his name was John. He had dementia. Patrick had Lewy body. And they would walk the neighborhood to help each other understand what they were going through. That was a sight to see, but it was beautiful. It was absolutely beautiful. So those are the stories of our love, our friendship. But I just wanted to say how we were blessed. And I have to say, my husband had a big part of this as well, because he was going through his journey with his father, as well as his friends going through this journey. We were able to walk beside them, dropping off dinners, sitting on the patio, hospital visits, and just... understanding that we are there just to be there. No opinions, just love. Carla kept her love and faith steadfast. She knew she was made to be Mrs. Patrick Prager, and she never gave up. So when I ask, when the question is asked to me, How did it feel to be a part of her life? The answer is simple for me. I'm honored and privileged. I'm blessed to be the chosen one. We love you, Patrick.

• Speaker #0

  There are so many things I would love to sit and unpack, but you said there's something I want to go back to. Sure. Because I felt that it was a phrase that you repeated and that many caregivers and people who surround caregivers need to remember, which was how you gave her space, but you knew your place. Because so many people that surround caregivers do come in trying to fix. But what I have heard from your story was the consistency of showing up. There was nothing to fix. There was just support to give.

• Speaker #1

  A lot of times people want to help and they want to fix it, don't know how, and they end up doing more damage. He definitely showed up.

• Speaker #2

  Sometimes they don't know what to ask for. People say, what do you need? What do you need? I don't know what I need. So the job of us who can do is to do.

• Speaker #0

  Caregivers don't need another question. They just need someone to ring the bell. Hand them a cup of coffee and that's it. Get some extra things. Get some extra. You're at the grocery store. Pick up an extra carton of eggs. Hand them over to a caregiver. You never know. That might help them for dinner that evening. Stop waiting for kindness. Just be kind.

• Speaker #1

  Especially for me. I've never, ever, ever had to ask for help. So I had to learn how. to ask for help.

• Speaker #0

  I want to thank you both for the honor of letting us listen to your story. I know, I know it will resonate. There are so many caregivers out there that just need to take a breath and look around and you have support. You do have it. And if you don't have it, ask for it.

• Speaker #1

  You may not recognize it right out the gate.

• Speaker #0

  No.

• Speaker #1

  You won't recognize it because you're in so much pain and so much fear. But that next person that is within eyesight, that is support.

• Speaker #0

  That is support.

• Speaker #1

  That next phone call, that is support. And you have to hone in and purposely think of it as support.

• Speaker #0

  I think for caregivers, and sometimes it gets confused, asking for help is not a sign of weakness. It is survival. It is emotional survival. So hang on and hold on to those people around you. And for those around who know a caregiver, get a cup of coffee, knock on their door, get some eggs, walk their dog, stop asking, just show up.

• Speaker #2

  Just show up. I love it.

• Speaker #0

  What did you say, Sharon? It's consistency. Takes work.

• Speaker #2

  Yeah. Yeah, it is.

• Speaker #0

  What a beautiful example of consistency and love the two of you are. And I cannot thank you enough for sharing with us.

• Speaker #1

  Thank you for having us.

• Speaker #2

  Yes. Thank you. Honored.

• Speaker #0

  For those caregivers out there, we see you and we hear you. See you next month. Hello.