Support Groups with Allison Fine
Allison Fine, Executive Director and Founder of the Center for Chronic Illness, talks about support groups.
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*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.
The following is a podcast from a qualified senior care provider, hurt, on the answers for elders radio show. And Welcome back to answers for elders radio everyone. I am here with a first time very special guests by the name of Alison Fine and Alison, you were with the center of chronic illness. Alison, welcome to the program thank you so much. Thank you for having me see Sam. You know, Alison, what you do, I think, is really important and so obviously Phillis in a little bit about what your mission is. Sure. Yeah, so again, an organization is called the Center for chronic illness and we offer free, professionally led support groups and health education programs for anybody living with some kind of ongoing health challenge and their loved ones. M You know, and that is can be so stressful and you know you don’t think about it, like we’ve discussed earlier, that there’s so many aspects when you’re chronically ill. Not only just people don’t understand, they don’t get it. There’s this overwhelming feeling of having to face every day with this huge challenge and whatever could loom on the HIRIZON. I’m sure too is is a factor. Tell me a little bit about you know, what do families deal with it this time, or what do people deal with in a chronic situation? Absolutely so. I think some of the biggest challenges that families face is that the patients are dealing with their own emotional process of the illness, you know, and that might be just feeling lots of loss and grieving those losses, or it might be feeling depressed or anxious, you know, about all the unknowns and what’s going to happen next? What will happen to my body? So there’s just, you know, an emotional process there. And then with families, they’re going through their own emotional process. You know, it’s sure loss of you know what I thought, you know, mom or dad, you know, could do or they what they were capable of. You know, they might feel angry or frustrated at times. You know where you did this yesterday. Why can’t you do it today? You know, and and so that’s just this whole mix of emotions floating around and I think families don’t always know how to communicate about that and, you know, aren’t even in touch with their own emotions. Well, very true, and I’m sure you know there’s unexplained anger because I’m mad at mom or dad because this is you know, they don’t understand, you know, or I don’t understand. I’m trying to reach them. And of course in the life of a senior there’s so much pride and as they start to lose their faculties. I know the families that I work with, I always talked about concepts of pride and denial. They don’t really realize how really bad it is and they don’t really how much of a burden it is on the entire family. Absolutely, and then the next part is just that pride factor that there could just going to dig in. You know, what have you found? Yeah, I’ve seen there’s there’s so many role reversals going on. You know, an adult child taking care of an aging parent. You know all of us on and you know they’ve been able to rely on their parent for most of their life, maybe for advice or for help with different things, and as their parent is losing their abilities, you know all of a sudden that adult child is taking a lot of those things over and so it’s this role reversal and, you know, having to be more in a parent role with their own parent, and so that can be really challenging. And then I’ve also seen a lot of difficulty asking for help and difficulty with acceptance around what those losses are and what needs what people need help with. And so yeah, again, I think that communication piece is huge among families and being able to just talk about, okay, well, what are the things that we can’t do anymore or we can’t expect to have done in the same way, and how can we all pitch in together and talk about this in a way that can get it done? And so what you’re really talking about is sometimes maybe even a whole family solution in many cases, of people understanding what the process is. Is that correct? Elsa? I mean I think in an ideal world, absolutely, you know everybody in the families involved. People are communicating about, you know, how to best help, you know, a mom or dad or husband or why? If you know whoever the the individual is who needs that help, you know, and not in a way that you’re taking their power away, true, you know, but in a way that it’s open and loving and supportive and involves them in the conversation. So yeah, and an ideal world, obviously you know. Yeah, so many people involved in that process. But you know, as you and I both know, that’s not always the case. It’s the ideal world and not only case. So what kind of programs would you offer to somebody that needed your help? Absolutely so. Right now we offer a variety of in person support groups all around the city of Seattle that provide not just emotional support but also tools for managing some of these things that we’re talking about. So, for example, we have a caring for chronic illness support group. So anybody of any age living with an ongoing health challenge can attend that support group and get, you know, again, not only the Camaraderie of meeting other people who are dealing with family members who have ongoing health challenges, but also, you know, benefit from our professional facilitator, who’s fantastic and leads them through meditations and kind of teaches some self care and education around what it means to be a caregiver. Wow, that’s important, for sure. For sure. And then how what’s the process that you go through? D is it basically how large the groups? What are the what is kind of the ideal scenario? It’s a good question. Yeah, so, of our six groups, so we just started as an organization in two thousand and seventeen with our first programs. And so, you know, our groups are new and they’re kind of still growing and people are still learning about them, and so some of them are smaller than others. You know, I’d say our biggest group right now has been around twelve people. HMM. Then our smallest group, yeah, it’s a maybe more like three or four. So you know, really just depends on the kind of group and the population and and really, you know, the process for people to join the group is about, you know, them contacting us, you know at the Center for chronic illness, and they can contact do that by email or phone and, you know, let us know, hey, we’re interested in attending a group. And we get a lot of people at contact us that don’t know what what group. They don’t, you know, maybe have any shared at our website yet don’t know what we offer. And so some of it’s just educating them and what the options are and learning more about their situation to try to help place them in the right group. And then sometimes people just show up to the groups and don’t contact us first, and that’s actually okay too. That’s awesome. That’s awesome. So we we are talking to allison fine and you are the executive directors. That correct, the Center for chronic illness. And Alison, where you located? Yeah, good question. So we actually we do not have a brick and mortar space. We it. We’re kind of those. Part of our idea the very beginning and starting this organization that, you know, rather than try to have people with physical limitations try to come to our space, that’s convenient for us, you know, instead, we would offer programs all over the Greater Seattle areas. Wonderful. So we actually we have a couple programs up north. We’ve got one on Capital Hill, we’ve got one down in south Seattle, we’ve got one over on the east side that we just started our most resident. Great, that’s Great. And what kind of when you say chronic illness, what kind of illness you know, conditions do you do? You primarily work with absolutely so it’s really any kind of physical or emotional health challenge. And so it can be something like multiple sclerosis or Parkinson’s disease or irritable bowel disease like Crown’s disease or all sort of Colitis, or it can be in the arthritis, family rheumator arthritis, lupus. It can be more of like a bacterial disease, like lyme disease. We have a rare support group that meets, that brings people together who live with different kinds of rare diseases. Wow, so really the whole gamut. And even if you don’t have a diagnosis, this is actually pretty common in the chronic illness world. You know, somebody’s been struggling with health challenges for a while and they don’t have a specific diagnosis. Yet that’s partly in welcome, I was going to say. And many if you don’t even have a die GNOSIS, I can imagine that’s stressful in itself. That’s a whole whole other conversation yet. Yeah, and obviously cancer. I’m we didn’t mention that, but I’m sure that that’s an issue. Heart disease, congestive heart failure, CP. Yeah, so to understand that. So we in these tell me a little bit about the support groups. What happens in the support urts? Sure, yeah, so it depends on the group. So we have two programs that are called living mindfully with chronic illness and you know, we hear these kind of words like mindfulness and meditation. You know what of those mean, and so there’s been a lot of research around the benefits of meditation and mind practicing mindfulness for those dealing with chronic pain, and so, you know, we decided that that would be a fantastic evidence space model to incorporate into some of our first programs. And so two of our groups, are east side program as well as our northgate program are focused around people coming to the group, you know maybe sharing just briefly what’s going on with them, what their chronic illnesses, and then our facilitator teaches strategies for managing that, for coping, for, you know, living as well as possible, as he would say, and so you know, it’s really allows for the patients to not only again be in a shared space of other people who understand what they’re going through, but to be able to learn some tools that they can take home with them. So that’s one example. And then some of our other groups like are we have just a general living with chronic illness group. That means on Capital Hill and actually has a lot of younger folks who attend that one. We have the rare disease group and really those groups. It’s more of an open setting where they can come share their stories, you know, talk about what living with chronic illness is like for them. You know, troubleshoot things like how do you manage, you know, difficult relationships, you know, how do you communicate to the people in your life? And I’m assuming to that that your facilitators and things, they have resources that they can help or recommend that you may not know exists out there. So coming to a group like this, not only are you going to connect with people that probably aren’t going through the same kind of challenges, but you’re going to walk away with tools. Absolutely that’s one of the big differences in the programs that were offering versus what’s kind of already out there as far as support groups go. You know, the majority of the support groups that are out there for people dealing with ongoing health challenges are disease specific and they’re also not professionally led or led by by patients. So peer let groups and that models great and it works for a lot of people, but there are a lot of people who really need more, and so, you know, our professional facilitators are at this point. They’re all going social workers, Glinn, riotial workers and there all trained to trained in chronic illness. You know, different areas of working with folks with chronic illness. Some have pains, you know training, chronic pain training, and some have caregiver training. So good. So, Alison, I’m so glad you want on the show today. And how do we reach you? Yeah, great question. Yeah, thank you so much for having us. So if people would like to reach us, our website is www dot the center for chronic illness dot org. So that’s one way can sign online and check out our programs. If you’d like to email us, you can email us at Info at the Center for chronic illness dot org. And if you’d like to just give us a call, it’s four to five, two nine, six, two, seven, hundred and five. Alison, thank you so much for being on the show today. Thank you so much, Susanne. Really appreciate it. Answers for elders radio show with Suzan Newman hopes you found this podcast useful in your journey of navigating senior care. Check out more podcast like this to help you find qualified senior care experts and areas of financial, legal, health and wellness and living options. Learn about our radio show, receive our monthly newsletter, receive promotional discounts and meet our experts by clicking on the banner to join the Senior Advocate Network at answers for elders, radiocom. Now there is one place to find the answers for elders.
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Originally published August 11, 2018