WEBVTT - Finding Community and Combating Caregiver Isolation 0:00:03.720 --> 0:00:08.640 Hi everyone. I'm Holly Robinson, pete actor, author, advocate, do 0:00:08.800 --> 0:00:12.399 it all mom, and I'm also a caregiver. And this 0:00:12.480 --> 0:00:16.960 is care Walks, a podcast from iHeartRadio and Voltaian Arthritis 0:00:17.000 --> 0:00:20.520 Pain Gel. It's a show for family caregivers who give 0:00:20.600 --> 0:00:23.520 everything to everyone and need to make time for themselves 0:00:23.800 --> 0:00:27.360 through movement. Every episode is designed for you to walk 0:00:27.400 --> 0:00:29.560 as you listen, so just think of me and my 0:00:29.600 --> 0:00:33.720 guests as your weekly walking buddies. We'll hear stories from 0:00:33.720 --> 0:00:37.040 caregivers and gain tips and insights from health experts and 0:00:37.080 --> 0:00:40.000 advocates who know how important it is to take care 0:00:40.040 --> 0:00:43.320 of yourself and manage joint pain due to arthritis that 0:00:43.440 --> 0:00:48.400 often accompanies being a caregiver. We'll discover community ourselves and 0:00:48.520 --> 0:00:51.320 maybe even alleviate some joint pain due to arthritis in 0:00:51.360 --> 0:00:54.800 the process as we walk together and connect to the 0:00:54.800 --> 0:01:02.240 best parts of being a caregiver. So thanks for joining 0:01:02.360 --> 0:01:05.760 us on what will be another great episode of care Walks. 0:01:06.720 --> 0:01:09.600 How has your week been? Were you able to take 0:01:09.640 --> 0:01:13.119 some time for yourself? Don't forget to lean on your 0:01:13.120 --> 0:01:16.959 support systems and find ways to connect and reconnect with 0:01:17.080 --> 0:01:21.840 the people and activities you love outside of your caregiving responsibilities. 0:01:22.720 --> 0:01:25.440 Just a reminder. Right now you're listening to the full 0:01:25.520 --> 0:01:27.839 version of this episode, but if you don't have time 0:01:27.880 --> 0:01:30.320 for a full walk today, then go check out our 0:01:30.440 --> 0:01:33.800 bridged version of this same episode. It's like cliff notes 0:01:33.840 --> 0:01:38.120 for podcasts. I asked earlier about connecting with others, and 0:01:38.200 --> 0:01:42.080 that's because today's episode is all about the importance of 0:01:42.160 --> 0:01:46.360 finding and maintaining a community as a caregiver. It's so 0:01:46.520 --> 0:01:49.080 easy to become an island and feel like you're all 0:01:49.120 --> 0:01:52.560 by yourself in this role, and that isolation can lead 0:01:52.600 --> 0:01:55.880 to depression. When I was younger, I didn't realize how 0:01:55.960 --> 0:01:59.520 much caregiver isolation was affecting me. And that's why I'm 0:01:59.560 --> 0:02:02.920 so glad that we can share care walks together, because 0:02:02.920 --> 0:02:06.080 you don't have to do this all on your own. Today, 0:02:06.200 --> 0:02:10.160 I'll be joined by caregiver Lakita Castin. Lakita has served 0:02:10.200 --> 0:02:13.840 as a caregiver to multiple family members. In her first 0:02:13.840 --> 0:02:17.920 two caregiving experiences with her aunt and uncle, Lakita frequently 0:02:17.960 --> 0:02:21.600 felt alone and without any support. When another aunt of 0:02:21.639 --> 0:02:24.639 hers became ill, she was determined to make sure her 0:02:24.680 --> 0:02:27.200 cousin didn't go through the same sense of isolation. 0:02:27.440 --> 0:02:27.960 She did. 0:02:28.560 --> 0:02:31.960 Lakda volunteered to help her cousin and her aunt, and 0:02:32.000 --> 0:02:34.760 she is now taking on a new mission with her organization, 0:02:35.280 --> 0:02:39.600 caring for caregivers. Before we get to my conversation with Lakita, 0:02:40.639 --> 0:02:48.959 let's get walking. A great mantra for today's conversation will 0:02:48.960 --> 0:02:54.160 be I am stronger when I ask for help. Whenever 0:02:54.240 --> 0:02:57.000 your to do list pops up during this walk, say 0:02:57.040 --> 0:03:00.239 that to yourself, I am stronger when I ask ask 0:03:00.440 --> 0:03:04.960 for help. Feel your feet connecting with the ground on 0:03:05.160 --> 0:03:08.880 each step. What do you notice about the way each 0:03:08.960 --> 0:03:12.320 part of your body works together to keep you in movement. 0:03:13.919 --> 0:03:17.160 Your feet can't do all the work. They connect with 0:03:17.200 --> 0:03:21.919 your knees, your arms, your lungs, all working in harmony. 0:03:23.440 --> 0:03:26.359 Let's take a couple of deep breaths together, In through 0:03:26.360 --> 0:03:34.440 the nose, out through the mouth, one more time, In 0:03:34.520 --> 0:03:43.240 through your nose and out through your mouth. If you're 0:03:43.280 --> 0:03:46.200 someone who is responsible for the care of someone in 0:03:46.240 --> 0:03:51.240 your life, you know that sometimes it can feel incredibly isolating, 0:03:52.240 --> 0:03:55.800 but you are not alone. With each step you take, 0:03:56.720 --> 0:04:00.120 think about someone who has been there for you. How 0:04:00.120 --> 0:04:02.440 do you feel when you let someone support you the 0:04:02.480 --> 0:04:07.720 same way you support others? Now, as you start to 0:04:07.720 --> 0:04:11.640 settle into your pace and your breath, remember to stay 0:04:11.680 --> 0:04:14.839 present in this moment. And when you start to think 0:04:14.880 --> 0:04:18.760 about your daily to do list again, remember today's mantra, 0:04:19.520 --> 0:04:26.080 I am stronger when I ask for help. Keep moving 0:04:26.480 --> 0:04:30.200 and give yourself time to recharge. I'm going to be 0:04:30.320 --> 0:04:33.839 there in your ear, keeping you company. Alongside our guest 0:04:33.920 --> 0:04:42.200 and fellow caregiver, Lakita Castin. I'm here with Lakita Castin. 0:04:43.040 --> 0:04:47.320 Lakita is a family caregiver based in Detroit. Lakita first 0:04:47.360 --> 0:04:50.800 began her caregiving journey when her aunt reached out looking 0:04:50.839 --> 0:04:55.719 for help caring for Lakita's uncle. Shortly after, her aunt 0:04:55.760 --> 0:05:00.039 passed away from cancer, but Lakda stayed in Baton Rouge 0:05:00.120 --> 0:05:03.520 and cared for her uncle alone for five years as 0:05:03.520 --> 0:05:08.240 you battled Alzheimer's disease. Today, Lakita is still caring for 0:05:08.279 --> 0:05:11.960 her family members, but no longer alone. She supports her 0:05:12.000 --> 0:05:15.640 cousin as they care for his mother together and build 0:05:15.640 --> 0:05:19.960 the organization Caring for Caregivers, which provides support and respite 0:05:20.160 --> 0:05:24.000 to family caregivers. Lakita, Welcome to care Walks. 0:05:24.320 --> 0:05:26.440 Thank you, thank you. I'm so happy to be here. 0:05:26.880 --> 0:05:29.839 I'm happy to have you, so could you tell us 0:05:29.920 --> 0:05:31.760 about how you first became a caregiver. 0:05:32.800 --> 0:05:37.440 It was the most extraordinary thing. My aunt was ill. 0:05:37.720 --> 0:05:40.839 I didn't know how ill she was, and she called 0:05:40.880 --> 0:05:42.960 me one day. I was living in Illinois. She called 0:05:43.000 --> 0:05:44.920 me one day and said, you know what, I need 0:05:44.920 --> 0:05:47.880 somebody here. Your uncle and I are getting a little 0:05:47.920 --> 0:05:50.760 older and we need somebody staying in the house. Could 0:05:50.760 --> 0:05:52.919 you come down and help us out? And so I 0:05:52.960 --> 0:05:56.599 came down and two weeks later she passed away. She 0:05:56.720 --> 0:06:01.120 had stage four lung cancer. She was singer, so she 0:06:01.240 --> 0:06:04.360 sounded so strong over the phone. No one knew she 0:06:04.440 --> 0:06:07.279 was as ill as she was. And when I got 0:06:07.320 --> 0:06:10.320 down there, I saw her how emaciated she was. It 0:06:11.160 --> 0:06:14.200 kind of a It scared me a little bit, but 0:06:15.720 --> 0:06:17.760 if you knew her life, you would know that she 0:06:17.800 --> 0:06:21.680 had lived a wonderful life. It was just amazing to 0:06:21.680 --> 0:06:24.359 see the love that she had for her husband. She 0:06:24.520 --> 0:06:28.400 told me that he was suffering from short term memory loss, 0:06:29.120 --> 0:06:33.719 but I found out that it was Alzheimer's and he 0:06:33.839 --> 0:06:37.280 was doing pretty well, pretty good at first, but it 0:06:37.320 --> 0:06:39.600 became worse and worse, of course as years went by. 0:06:40.560 --> 0:06:42.919 I'm so glad you got that chance to be with her. 0:06:43.480 --> 0:06:46.760 She sounded like an amazing woman, your aunt, just the 0:06:46.760 --> 0:06:48.960 fact that she reached out and you were able to 0:06:49.000 --> 0:06:51.960 come and connect with her, and then you shifted your 0:06:51.960 --> 0:06:53.719 focus to her husband, your uncle. 0:06:54.360 --> 0:06:59.400 Yes, my uncle was a very very intelligent man. He 0:06:59.560 --> 0:07:06.159 was a of engineering at Southern University, and I was 0:07:06.200 --> 0:07:09.320 not used to him being the way he was, so 0:07:09.440 --> 0:07:13.080 to watch him decline that way was a bit unnerving, 0:07:13.160 --> 0:07:15.120 But every day you have to get used to a 0:07:15.120 --> 0:07:17.640 new normal. But I got to know him in a 0:07:17.680 --> 0:07:21.320 way that I I don't think anyone else knew him, 0:07:21.760 --> 0:07:25.920 and that was a consoling thought for me. 0:07:26.920 --> 0:07:33.000 Oh wow, what would you say that caregiving means to you, Lakita? 0:07:33.840 --> 0:07:36.960 Caregiving means giving back to the people and your life 0:07:36.960 --> 0:07:39.920 who have given so much to you. My aunt and 0:07:40.000 --> 0:07:44.160 my uncle were amazing human beings. They didn't have children, 0:07:44.440 --> 0:07:48.640 so they gave to us. I would get tickets to 0:07:48.680 --> 0:07:52.160 her show she sang in Porking Bess at the Metropolitan Opera. 0:07:52.480 --> 0:07:54.920 He traveled the world, and there were always little gifts 0:07:54.960 --> 0:07:58.600 and things that they would send to us as nieces 0:07:58.640 --> 0:08:02.160 and nephews of their sisters and brothers. And they gave 0:08:02.280 --> 0:08:06.000 so much of themselves to everyone else that you have 0:08:06.080 --> 0:08:09.200 to give back to those people. And that's what family 0:08:09.240 --> 0:08:11.760 caregiving means to me. Even now I have a cousin 0:08:12.320 --> 0:08:16.960 he is the only child, and watching him trying to 0:08:17.040 --> 0:08:20.720 care for my aunt, I really said, no, I can't 0:08:20.720 --> 0:08:24.000 have him go through what I went through by myself. 0:08:24.320 --> 0:08:27.600 So I just kind of moved back here. 0:08:28.640 --> 0:08:32.400 What do you wish that you knew before you became 0:08:32.440 --> 0:08:33.359 a caregiver. 0:08:33.960 --> 0:08:39.480 Miss Holly, Let me tell you. I wish that I 0:08:39.640 --> 0:08:43.800 knew things that I still don't know. I want to 0:08:43.840 --> 0:08:46.880 know everything about the disease I'm still learning. I want 0:08:46.880 --> 0:08:48.560 to know everything about the disease. I want to know 0:08:48.600 --> 0:08:50.400 what the elements. I want to know where doctors. I 0:08:50.480 --> 0:08:53.920 want to know everything, and I still don't know everything. 0:08:54.679 --> 0:08:57.680 What I will say is self care is important. That 0:08:57.760 --> 0:09:01.120 you make sure you take care of yourself. That's one 0:09:01.160 --> 0:09:04.520 thing that I wish I had done a lot better. 0:09:05.280 --> 0:09:07.839 Make sure that I take my walks, make sure that I. 0:09:08.000 --> 0:09:11.000 Get to the gym when I can, make sure my 0:09:11.120 --> 0:09:15.080 doctor's visits are scheduled and that I keep them. Those 0:09:15.080 --> 0:09:17.280 are the things that I want to tell other care 0:09:17.360 --> 0:09:18.599 care for as family caregivers. 0:09:19.520 --> 0:09:23.480 Yes, aimen to that. That's you know, as I'm asking 0:09:23.480 --> 0:09:26.120 you these questions, I'm answering myself in my head. And 0:09:26.520 --> 0:09:28.840 that is the number one thing I wish I knew too, 0:09:29.520 --> 0:09:31.640 just to take a little bit better care of myself 0:09:32.720 --> 0:09:36.559 while I was caring for my dad. It's so difficult 0:09:36.720 --> 0:09:40.160 and if you can't hold up, you can't hold up others. 0:09:40.440 --> 0:09:43.079 So you need to hold yourself up and care for yourself. 0:09:43.800 --> 0:09:48.080 If you know anything about caring for anybody, you know 0:09:48.160 --> 0:09:50.000 that that person needs to get out the house. You 0:09:50.080 --> 0:09:52.520 know that person probably has laundry that needs to be done. 0:09:52.960 --> 0:09:57.240 Don't wait for them to ask. Just come over, drop 0:09:57.280 --> 0:09:59.080 off a meal. I was telling somebody, just drop off. 0:09:59.120 --> 0:10:00.760 It would be nice if somebody. 0:10:00.480 --> 0:10:04.400 Would just drop off ham, you know, some chicken. Just 0:10:04.480 --> 0:10:06.200 drop it off, so maybe I don't have to cook. 0:10:06.800 --> 0:10:10.760 Yes, that is true, That is true. But I think 0:10:10.800 --> 0:10:14.280 my takeaway is that I should have asked. Even though 0:10:14.280 --> 0:10:16.880 I felt like my brother should have known he saw 0:10:16.920 --> 0:10:19.320 what I was dealing with. I should have picked up 0:10:19.320 --> 0:10:22.280 the phone and said, I need help? Can you bring 0:10:22.280 --> 0:10:25.720 me some food? And I think that we have to 0:10:25.760 --> 0:10:29.280 self advocate because we can't expect other people to That's true, 0:10:29.520 --> 0:10:30.400 just you know, just. 0:10:30.920 --> 0:10:34.040 To have that mindset. Yeah, that's true. That's true. 0:10:34.280 --> 0:10:37.000 You mentioned that you were on your own as a 0:10:37.000 --> 0:10:40.320 caregiver in Baton Rouge, and since then have you been 0:10:40.320 --> 0:10:42.640 able to talk to your friends and your family about 0:10:42.640 --> 0:10:44.040 your feelings and your experience. 0:10:45.520 --> 0:10:47.680 Yes, I have, And as a matter of fact, my 0:10:47.800 --> 0:10:50.320 daughters would come and visit me when they could. We 0:10:50.400 --> 0:10:52.760 all live in separate states, so they came and visited 0:10:52.800 --> 0:10:54.559 when they could, and they would give me a break 0:10:55.080 --> 0:10:57.439 or let me go for a weekend just to get 0:10:57.480 --> 0:11:03.359 some rest, because that's what's needed. I started Caring for Caregivers, 0:11:03.559 --> 0:11:07.160 a foundation where I want to supply respee care for 0:11:07.679 --> 0:11:11.400 family caregivers and that's it. Maybe they need a massage 0:11:11.600 --> 0:11:14.480 in home massage or hair done, just something to make 0:11:14.520 --> 0:11:19.760 them feel like themselves. They're not always a caregiver every 0:11:19.840 --> 0:11:22.720 single moment of every single day, because that's what you 0:11:22.800 --> 0:11:24.319 are as a family caregiver. 0:11:25.040 --> 0:11:29.319 Absolutely well, Caring for Caregivers sounds like an awesome resource, 0:11:30.240 --> 0:11:32.720 just an opportunity just find community. 0:11:32.880 --> 0:11:34.600 And yes, that was. 0:11:34.559 --> 0:11:39.000 Something that I wish I had. I found it was 0:11:39.120 --> 0:11:44.920 very difficult to find resources for caregiver support. Yes, I 0:11:44.960 --> 0:11:51.400 felt very isolated. So how would you suggest caregiver's best 0:11:51.400 --> 0:11:53.239 combat feelings of isolation? 0:11:54.280 --> 0:11:57.800 The way I did it was going back to something 0:11:57.840 --> 0:12:00.840 that I loved when I was younger. I went to 0:12:01.480 --> 0:12:04.160 cast Tech here where I majored in performing arts. And 0:12:04.240 --> 0:12:08.200 of course I couldn't do that there in Bad and Rouge, 0:12:08.240 --> 0:12:11.720 I couldn't really do a lot of theatrical things. But 0:12:11.920 --> 0:12:16.040 I became a costume designer for community theater there, so 0:12:16.280 --> 0:12:18.000 I did a lot of costume design and then I 0:12:18.120 --> 0:12:20.280 ended up acting. And that was the one thing that 0:12:20.320 --> 0:12:23.040 my uncle would stand still for. He would love to 0:12:23.080 --> 0:12:25.120 go because my aunt was not O for sinker. He 0:12:25.120 --> 0:12:27.400 would love to go to the theater and just sit 0:12:28.040 --> 0:12:29.839 and watch. It doesn't matter whether it was rehearsals. And 0:12:29.880 --> 0:12:32.440 that was one thing that was constant. And then isn't 0:12:32.480 --> 0:12:37.680 it wonderful? Your theater community is amazing. They're all family, 0:12:38.040 --> 0:12:40.920 so they would sit there with them. He became everyone's 0:12:40.960 --> 0:12:44.600 uncle and it was amazing how they treated him. The 0:12:44.679 --> 0:12:48.080 first role that I played in was Dot by Coleman Domingo, 0:12:48.760 --> 0:12:52.200 and it's about a woman who has Alzheimer's. 0:12:52.840 --> 0:12:57.520 Wow, And it was so prophetic. It was amazing. 0:12:58.120 --> 0:13:01.240 I was able to like channel some things from him 0:13:01.559 --> 0:13:05.400 and totally understand where that character came from. So I 0:13:05.440 --> 0:13:08.680 loved how everyone rallied around my uncle, and I loved 0:13:08.679 --> 0:13:10.719 how I was able to do that and he was 0:13:10.760 --> 0:13:12.920 able to see it. I don't know whether he understood 0:13:12.960 --> 0:13:16.160 everything about it, but he always had a kiss on 0:13:16.160 --> 0:13:19.319 the cheek from me when I came off stage, and. 0:13:21.640 --> 0:13:23.040 Man, I'm cheering up from that. 0:13:23.400 --> 0:13:28.959 Wow, Oh that's so emotional. That's that's a great memory. Though, 0:13:29.160 --> 0:13:35.439 that's a great memory. We'll be right back with more 0:13:35.559 --> 0:13:46.880 from Lakita Caston. And now back to my conversation with 0:13:46.960 --> 0:13:53.400 Lakita Castin. So let's talk a little bit about self care. 0:13:53.920 --> 0:13:56.160 Tell me what you do, what's your me time? What 0:13:56.200 --> 0:13:56.920 does that look like? 0:13:58.360 --> 0:14:03.400 My me time is is writing and reading to my end. 0:14:03.920 --> 0:14:09.520 And actually I just wrote a screenplay called Decline about 0:14:09.559 --> 0:14:13.880 a woman's decline while she's being a caregiver, and it 0:14:13.920 --> 0:14:18.359 got selected into film festivals, so hopefully I'll be able. 0:14:18.120 --> 0:14:20.400 To get it produced. 0:14:20.440 --> 0:14:22.920 And it's just a short film, it's nothing major, but 0:14:23.640 --> 0:14:25.640 I want to be able to show that to people, 0:14:26.640 --> 0:14:31.040 the effects that caregiving has on a person when they're 0:14:31.080 --> 0:14:35.480 with another person who needs the constantly every single day. 0:14:36.360 --> 0:14:40.360 And Lookita, how has that writing? How is writing decline? 0:14:40.520 --> 0:14:44.200 How has that been cathartic or therapeutic for you? It 0:14:44.280 --> 0:14:44.760 got so. 0:14:44.880 --> 0:14:45.720 Much out of me. 0:14:45.960 --> 0:14:49.480 It got so much out I was able to write 0:14:49.520 --> 0:14:53.760 down in words the things that I was feeling, the 0:14:53.800 --> 0:14:58.280 things that I was going through, and hopefully when people 0:14:59.080 --> 0:15:02.000 see it or read it, they can identify with. And 0:15:02.040 --> 0:15:05.720 even people who are not able to identify with caregiving 0:15:05.960 --> 0:15:10.600 now family caregiving now they can look at it and say, Okay, 0:15:10.880 --> 0:15:14.840 I understand and I will be able to do better 0:15:14.880 --> 0:15:18.120 with my own family or my own person that I'm 0:15:18.160 --> 0:15:18.760 caring for. 0:15:19.600 --> 0:15:22.040 So that has helped me. 0:15:23.280 --> 0:15:26.400 You mentioned that finding a community theater when you are 0:15:26.440 --> 0:15:29.080 taking care of your uncle, and then you've also written 0:15:29.080 --> 0:15:33.160 this screenplay as well. How has art made you feel 0:15:33.200 --> 0:15:34.800 less isolated as a caregiver? 0:15:35.880 --> 0:15:39.080 Art is something that I don't know how anyone else 0:15:39.120 --> 0:15:44.360 feels about it, But in my lowest moments, in the 0:15:44.440 --> 0:15:49.880 days when I'm down, I can look at beautiful dance, 0:15:50.680 --> 0:15:53.400 read a wonderful book, see a painting that just makes 0:15:53.400 --> 0:15:57.000 you want to cry, and it opens up a whole. 0:15:56.760 --> 0:15:57.600 New world to you. 0:15:58.120 --> 0:16:03.960 Not only that art as therapy music something that is 0:16:04.120 --> 0:16:08.160 wonderful for people with Alzheimer's and or dementia. When I 0:16:08.160 --> 0:16:10.760 couldn't relate to my uncle in any kind of way, 0:16:11.480 --> 0:16:14.880 I would put on some classical music and oh that man, 0:16:15.120 --> 0:16:17.600 he would calm down. And he was a big man too, 0:16:17.720 --> 0:16:21.240 he is about six foot six foot one. And when 0:16:21.280 --> 0:16:22.760 he didn't want to do something, he didn't want to 0:16:22.800 --> 0:16:24.400 do it, or he didn't want to eat something, he 0:16:24.440 --> 0:16:25.200 didn't want to eat it. 0:16:25.280 --> 0:16:27.200 But when I would put on music. 0:16:27.440 --> 0:16:31.560 His whole demeanor would change. And that's just what art does. 0:16:31.880 --> 0:16:35.680 Art moves people, no matter what frame of mind you have. 0:16:36.320 --> 0:16:40.600 It can move. Yes, for my dad it was Ray Charles. 0:16:40.880 --> 0:16:43.520 If I put some Ray Charles on, he would perk up, 0:16:43.960 --> 0:16:48.520 Oh my god, everything about Ray Charles Andy and listen 0:16:48.560 --> 0:16:53.200 to it. Yes, it was, I mean Ray Charles was everything. 0:16:53.240 --> 0:16:57.880 And so I totally understand how that music in the 0:16:58.000 --> 0:17:01.880 arts can really penetrate all of these situations that are happening. 0:17:01.920 --> 0:17:05.800 And I love hearing that. And so, how has your 0:17:05.840 --> 0:17:10.240 approach to caregiving and being a caregiver evolved and changed? 0:17:10.760 --> 0:17:14.240 We talked about, you know, letting people know what you need, 0:17:14.320 --> 0:17:17.080 and that was certainly something that if I could go 0:17:17.200 --> 0:17:20.960 back and be in that situation again, I would have 0:17:21.080 --> 0:17:24.440 maybe advocated for myself a little more. But what would 0:17:24.480 --> 0:17:28.399 you say how your approach has changed from the time 0:17:28.440 --> 0:17:29.840 you first became a caregiver. 0:17:30.680 --> 0:17:33.560 Don't feel like I have to take everything on and 0:17:33.760 --> 0:17:37.840 don't take things personally. There is always a little bit 0:17:37.880 --> 0:17:41.480 of ego in everything that we do. It has to 0:17:41.520 --> 0:17:43.680 be done this way, it has to be done that way. 0:17:45.400 --> 0:17:49.280 Just let things go. Don't feel like you have to 0:17:49.400 --> 0:17:53.960 do everything. And that's how I feel now with my 0:17:54.040 --> 0:17:59.280 aunt and with my cousin, who is wonderful. That's one 0:17:59.280 --> 0:18:01.520 thing I'll invite more people in. 0:18:02.440 --> 0:18:06.080 Yes. And the patience, right, So patience is Yes, it's 0:18:06.160 --> 0:18:10.520 something that I learned. I didn't think I had the 0:18:10.560 --> 0:18:15.240 patience to be a caregiver, no long term, but you 0:18:15.320 --> 0:18:18.920 develop it, you develop it, and it's something that is very, 0:18:19.080 --> 0:18:22.240 very tangible. You don't know how impatient you are until 0:18:22.240 --> 0:18:25.320 you have to be patient. Yes, that was another thing 0:18:25.359 --> 0:18:29.320 that did you find that you had to really develop 0:18:29.359 --> 0:18:30.399 your patience muscle. 0:18:31.280 --> 0:18:34.919 Yes, and did even more so than you do with 0:18:34.920 --> 0:18:35.359 the children. 0:18:35.440 --> 0:18:37.439 I know you have children that I have three girls, 0:18:38.080 --> 0:18:43.359 and children are different than grown adults. You know, of course, 0:18:43.400 --> 0:18:47.680 they're setting their ways and we're setting our ways. 0:18:48.200 --> 0:18:50.440 But so there's. 0:18:50.280 --> 0:18:51.720 Always a conflict. 0:18:51.760 --> 0:18:54.199 There's always a little bit more of a conflict, I 0:18:54.200 --> 0:18:58.240 think when you're dealing with adult family who needs more assistance. 0:18:58.400 --> 0:19:01.639 So, yes, patience is more than a virtue. 0:19:01.840 --> 0:19:03.439 You have to work at it. You really have to 0:19:03.440 --> 0:19:04.720 work at it. And it's a process. 0:19:05.000 --> 0:19:05.280 Yes. 0:19:06.240 --> 0:19:11.480 So on top of the emotional dedication that caregiving requires, 0:19:12.400 --> 0:19:17.920 there's a lot of physical work. You're lifting, you're you're walking, 0:19:18.040 --> 0:19:22.399 you're running, you're chasing, You're doing so much stuff. I 0:19:22.440 --> 0:19:25.120 wanted to know how how has that affected your body 0:19:25.600 --> 0:19:28.439 and furthermore, how has it affected your joint pain. 0:19:29.280 --> 0:19:30.200 It's been a struggle. 0:19:31.600 --> 0:19:36.440 Some days are are better than others, but still I'm 0:19:36.440 --> 0:19:39.720 a little up there in age, so it's more of 0:19:39.760 --> 0:19:40.280 a struggle. 0:19:41.640 --> 0:19:43.119 And that's where self care comes in. 0:19:43.320 --> 0:19:45.720 Of course, you have to exercise, you have to keep 0:19:45.720 --> 0:19:48.720 on your routines that you do for yourself in order 0:19:48.720 --> 0:19:49.920 to keep your body in shape. 0:19:50.320 --> 0:19:52.280 In order to do these things that you need to 0:19:52.320 --> 0:19:55.199 do for your loved one. 0:19:54.320 --> 0:19:58.040 You really do you push through the physicality, right, So 0:19:58.119 --> 0:20:01.840 if you're hurting and your joints are hurting, or you're 0:20:01.880 --> 0:20:06.400 not feeling good physically, you just push through it. And 0:20:06.440 --> 0:20:09.639 that's that's where we have to stop as caregivers and 0:20:09.760 --> 0:20:12.919 really recognize that we have to take care of ourselves 0:20:13.320 --> 0:20:16.760 in a real tangible way as caregivers. We just have 0:20:16.840 --> 0:20:17.560 to pay attention. 0:20:18.320 --> 0:20:21.919 Fifty nine percent of family caregivers they suffer from, like 0:20:22.000 --> 0:20:25.680 you were saying earlier, isolation and depression. And if you're depressed, 0:20:26.200 --> 0:20:30.720 you don't know how to push through sometimes, so getting 0:20:30.720 --> 0:20:34.760 that outside to help, the therapy, the support groups, if 0:20:34.800 --> 0:20:37.320 you can find one, it's very important so that you 0:20:37.320 --> 0:20:39.160 can push the isolation and depression. 0:20:40.160 --> 0:20:45.119 Yes, the isolation is something that rarely is talked about 0:20:45.240 --> 0:20:49.480 in our caregiver community. I don't ever remember talking about 0:20:49.520 --> 0:20:52.879 isolation or feeling isolated and during my caregiving years, and 0:20:52.920 --> 0:20:55.840 I started caregiving at very young age at nineteen for 0:20:56.000 --> 0:20:58.960 my dad. Oh wow, Yeah, I was nineteen years old 0:20:59.000 --> 0:21:03.360 when he got parking since disease. And I never discussed 0:21:03.600 --> 0:21:09.000 the isolation. Now I was young, you know, fifty seven now, So. 0:21:09.200 --> 0:21:11.440 I bet you cried about it. I bet you cried 0:21:11.480 --> 0:21:11.880 about it. 0:21:11.960 --> 0:21:15.000 I did, And it manifested itself in other ways, right, 0:21:15.040 --> 0:21:18.159 it came out in other ways and other conversations. It 0:21:18.240 --> 0:21:20.480 was really more about the frustration and the sadness I 0:21:20.520 --> 0:21:23.159 had about my father and how he was. His body 0:21:23.240 --> 0:21:27.240 was degenerating and with his punkinsins and he also had dementia, 0:21:27.280 --> 0:21:31.200 so that was difficult at the same time. But being 0:21:31.240 --> 0:21:34.720 so young, you know, I absorbed a lot of it. Wow, 0:21:35.160 --> 0:21:38.479 But I did. I did emotionally feel that I probably 0:21:38.480 --> 0:21:41.159 could have really used some help and be able to 0:21:41.200 --> 0:21:43.280 find somewhere in the community that I could talk about 0:21:43.280 --> 0:21:44.600 the isolation I was feeling. 0:21:45.160 --> 0:21:48.119 I remember your father, I remember him. 0:21:47.960 --> 0:21:54.720 On Oh my Daddy, the og the original Gordon on Street. Yeah, 0:21:54.760 --> 0:21:56.760 you have to be you'd have to be a certain 0:21:56.800 --> 0:22:01.520 age to remember my dad's Gordon from sixty nine to 0:22:01.560 --> 0:22:06.919 seventy three. But yes, he was like America's father for 0:22:06.960 --> 0:22:10.000 a while. It was really an amazing time. He was 0:22:10.040 --> 0:22:13.439 a remarkable man and got Parkinson so young in his 0:22:13.520 --> 0:22:18.720 forties and it was just pretty difficult, Yeah, really difficult, 0:22:18.760 --> 0:22:22.680 And I didn't There was no no search engines back then, 0:22:22.840 --> 0:22:27.000 so I couldn't really get much information about it. My 0:22:27.160 --> 0:22:30.359 question for you is when when do you know you 0:22:30.560 --> 0:22:33.280 need to reach out to others for help or support? 0:22:33.480 --> 0:22:35.440 What are what are the signs. 0:22:36.480 --> 0:22:40.879 I think when you're angry, the frustration kicks in. I 0:22:41.200 --> 0:22:44.000 think that's when you need to make sure that you 0:22:44.119 --> 0:22:47.720 reach out, because God bless them. There were some days 0:22:47.720 --> 0:22:52.679 that I was just like, would you please just do 0:22:52.840 --> 0:22:55.399 as I asked, Let's get this done. That's why I 0:22:55.440 --> 0:22:58.600 said earlier, I'm sure I'm not going to be that 0:22:58.680 --> 0:23:02.360 picky about things that need to be exactly the way 0:23:02.359 --> 0:23:04.000 you're gonna put on these socks, you're gonna put on 0:23:04.080 --> 0:23:06.399 these pants. You know what you want to wear, You're 0:23:06.480 --> 0:23:08.280 underwear outside your Jim shortz. 0:23:08.720 --> 0:23:10.080 We're not going anywhere today. 0:23:10.119 --> 0:23:14.880 Fine, but yeah, just when you start getting so frustrated 0:23:14.880 --> 0:23:17.400 that you're frustrated at your loved one and you're frustrated 0:23:17.400 --> 0:23:19.439 at yourself, that's when you need to go out and 0:23:19.480 --> 0:23:21.240 you need to talk, and you need to talk to 0:23:21.320 --> 0:23:22.200 someone quickly. 0:23:23.160 --> 0:23:25.840 And how important is it for you to talk to 0:23:26.520 --> 0:23:30.960 and connect with other caregivers like minded people. I mean, 0:23:31.000 --> 0:23:34.600 I'm just having a great time talking to you because 0:23:34.680 --> 0:23:37.560 I feel like we get each other right, We understand 0:23:37.880 --> 0:23:42.000 what we've been through, what we're going through. I first 0:23:42.000 --> 0:23:44.120 went to a caregiver support group when I was about 0:23:44.200 --> 0:23:48.440 nineteen or twenty and I felt so good after talking 0:23:48.600 --> 0:23:53.320 to other caregivers and other families dealing with Parkinson's at 0:23:53.359 --> 0:23:59.679 the time, I felt so heard and seen. Really felt 0:23:59.680 --> 0:24:03.120