S1: It's time for KPBS Midday Edition. On today's show , The Challenges of aging in Southern California and resources to help family caregivers. I'm Jade Hindman with conversations that keep you informed , inspired , and make you think. With National Family Caregivers Month behind us , the reality of aging will always be in front of us , whether we do it gracefully or not. Often depends on our family caregivers. We'll hear from the Southern Caregiver Resource Center and Alzheimer's Family Centers on the best ways to care for an aging loved one. That's ahead on Midday Edition. In the next 15 years , the population of Californians 65 and up will jump more than 50%. That reality creates a distinct need for caregivers , many of whom are family. Here in San Diego , nearly 500,000 family caregivers regularly provide that care. It's a role which comes with low pay , no sick days , and compound stresses on family members. Today , I've got a panel of guests to talk about support and resources for family caregivers. Martha Runyan is the vice president with the Southern Caregiver Resource Center , which works with family caregivers across San Diego County. Martha , welcome to Midday Edition.
S2: Thank you. Pleasure to be here.
S1: So glad to have you. And Shannon Patel also joins us. She's a social worker with the George G. Glennon Alzheimer's Family Center. Shannon , welcome to you.
S3: Thank you so much.
S1: And Lily Reber is also here. She is part of the sandwich which generation. She takes care of her mother and also has kids of her own. Lily , welcome to Midday Edition.
S4: Thank you so much.
S1: I so appreciate all of you being here. Um , Martha , I'm going to start with you.
S2: Some are caring for their other family members , like children or spouses. Others are working full time. And caregiving can take many different forms. It can be taking care of someone with a cognitive decline like dementia , or maybe caring for someone who is frail and elderly. So there really is a variety of caregivers that we work with. Mhm.
S1: Mhm. And Lily , you know , firsthand , um , how caregiving is you take care of your mother. and tell me a bit about that situation.
S4: Yeah , well , I am a mother of two young kids of my own , and I am also a caregiver for my mother who has Alzheimer's. And we live next door to my parents. So caregiving is really woven into my everyday life. Hmm.
S1: Hmm. And , um , can you tell me more about your caretaking journey and what that's been like ? Because , uh , you know , being in this sandwich generation , so to speak , taking care of your kids , um , working and taking care of your mother. Um , tell me a bit more about that.
S4: Um , I think it's a journey that no one is quite prepared for. Um , it's there's a lot of grief that comes with it. You know , you step up because that's what. That's what we do. And it's. I'm so glad that we can be here and be present for this. I think it's one of the greatest gifts we can give. It's also one of the greatest challenges. and there's been a lot of grief in what I thought this chapter of my life would look like versus what it actually does. And so I'm so grateful to be here , and I'm so happy to give my kids the opportunity to have that time with my mother while she is where she is. But it's also incredibly heavy emotionally. Mhm.
S1: And with that , the need for support for caregivers is huge. Shannon. And you offer that support. Tell me a bit about what it is you do. Yeah.
S3: Yeah. So my primary role at the Gleaner Alzheimer Family Centers is caregiver support. So working with caregivers like Lily just kind of helping be that person in their corner , not only referring them to resources like Southern Caregiver Resource Center and so many other wonderful community partners we have in San Diego County. But just really allowing them to have that space in that place to feel safe and talking about the sad stuff and talking about the things that maybe the rest of society don't quite understand , or maybe aren't really ready to sit and listen to. Um , and so the combination of that individualized support , you know , on phone calls , zoom in person , but also group support groups where they can connect with others that are on this same journey can really make a big difference. And just helping them feel less alone and helping build a community around them in this time of need.
S1: One of the things that struck me that Lilly mentioned is the grief that can come with caregiving.
S3: A very big part of the caregiving journey is grief for a lot of things. Grief of what you thought this chapter would be , um , grief of watching the person you love , you know , change in front of your eyes. They're still here physically , but you're seeing parts of them , potentially. Go away , whether that's cognitively or physical abilities. Um , and there's a lot of disenfranchised grief , which means society isn't really wanting to acknowledge it. Well , they're still here. You're so lucky that your mom is still here with you. Well , yes. And it's still really sad to watch this happen. Right. Or what we call ambiguous loss , which is it's hard to put a finger on what could have been. But you're still watching these small , small losses on a daily basis , and those can really pile up. Hmm.
S1: Hmm. Martha. Aside from your work , you also were a family caregiver yourself.
S2: They just kind of step into the role. There is no training , right ? None of us really grew up saying , I can't wait to be a family caregiver. We just kind of step in and do what needs to be done. And of course , we find ourselves that increasingly it gets harder and harder. Um , when I was caring for my great aunt , that's who I was a caregiver for. She was elderly , she was frail and had dementia. But I didn't know that. I kind of learned it in the process. And at first I thought , I'm young. I was in my 30s. I can get a pick up a brochure , call a number , I'll be fine , get some resources. But it was really the emotional aspect of caregiving that was really difficult to manage. That's what really got to me and I needed that support , that emotional support. So I turned to Southern Caregiver Resource Center and became a client because I needed someone to guide me through all of this , you know , just day in and day out , the emotional , the turmoil , the roller coaster. I called it the emotional roller coaster that I was on on a daily basis.
S1:
S2: I seriously , honestly thought that I was just going to go and visit her and make sure she had milk , and maybe make her some dinner and wash her dishes. What I didn't realize is that when I left and I would leave her at her house , I would come back and she was in the same spot. So I thought , was she there all day ? Um , you know , did she know to eat ? I didn't know what was happening. And so I had to become almost like a detective and try to figure out what else does she need. And that's why it became so overwhelming. So daunting that I needed someone to help me at least validate what I was feeling. Right ? Like Shannon was saying , we love these individuals.
S1:
S4: Everything that's being said is is very much my lived experience. And , um , it's it does. It comes on. We often don't know what's happening. And so it's a slow a slow roll into what becomes your reality. And , um , the emotional support has been tremendously valuable for me as is , because especially just at the age that I am and being in the sandwich generation , um , it's very isolating. And , you know , when I looked around , there weren't a lot of people that were going through similar things. And so it's been so , so helpful to , to see , um , that it does exist , that I'm not alone in it and that there are resources available and people to talk to , to , to really help validate my experience and , and hold me through this. Yeah.
S1: Yeah. I mean , because one thing that we don't hear about is resources for caregivers. There's there's a ton of resources out there for so many other things , whether you're going through a chronic illness or , uh , or so many other things , but but not necessarily for Caregivers. Shannon , tell me about the the the support that you are providing for people who find themselves in this position. Yeah.
S3: Yeah. So the Gleaner Alzheimer Family Centers , we are primarily an adult day health care program. It's a unique space where if your loved one maybe isn't safe to stay home alone anymore , or they just need more stimulation , you need a break. They can actually come to one of our three centers in San Diego County , have meals , have the care of a nurse , have activities , and have their own socialization , um , which is really beneficial for them as well. And then it's a win win because you as a caregiver can know they're safe and you then get access to supports , like me , a licensed clinical social worker who's actually going to call and check in on you about once a month. You can call me when you're having a hard day. I have a team of interns from San Diego State's social work program in the master's level that also work to check in on as many caregivers as we can each month. Really trying to take that off their to do lists. Sometimes it's hard to even just pick up the phone and ask for help because you are so overwhelmed with all the tasks. So we kind of our slogan is like , let's take something off their to do list. You know , let's , let's take help getting help off their to do list and really just saying , how are you ? How are things going at home ? And through their stories and checking in , we can actually then , you know , refer them to resources and provide that emotional support in real time.
S1: Well , and as I would imagine , sometimes caregivers don't know what they need help with. Yes.
S3: Yes. And that's why we have sort of this meaningful check in process at the Gleaner centers where we've gotten these questions that we know they're going to elicit valuable information for us clinically to see what they might need help with , because they may not know what resources are out there. And sometimes they don't even know that. What they're telling us is , is kind of a red flag. We know because we are basing it off of our , you know , decades of experience and hundreds of clients we've served. So then that's when we're able to provide some of that education of what you're sharing is is actually pretty , pretty tricky. Let's work through this together. They may have thought that that was just what they had to work with , and that might not be the case once they share it.
S1: Right ? Because not only are you a caretaker , you're also coordinating doctor visits. Yes , and spearheading the communications on all of that. And so resources I would imagine are very important. You know , what can those who are close to caregivers do to help them.
S3: Don't back away ? I think a lot of our family caregivers share stories about how they feel like people start fading into the background as their loved one progresses and needs more help. People get uncomfortable , they get scared. They don't want to say or do the wrong thing , and they stop calling. They stop inviting them over to holiday dinners and really , they feel like they lose that whole community. So just keep showing up and maybe even educate yourself on what they might be going through.
S1: Martha , you got something to I.
S2: You know. Listening to you saying that that happened to me when I was caring for my great aunt. Like I said earlier , I was in my 30s , so a lot of our friends were starting to have children and get togethers and parties. And many times I'd find myself saying , oh no , sorry , I can't. And it's because I couldn't really bring someone with dementia who was elderly and tired to a kid's birthday party. It was it was just going to be too much. And so what started happening with me is I started becoming more isolated. Right. The invitations kind of ceased to to come. And so I wasn't as more of a part of their group anymore. And so that's why we are noticing with the clients who come to us that there is an incredible decline , um , in their mental health , they exhibit really high levels of clinical depression , of isolation , of feeling burdened. And that just leads into a vicious cycle of , um , you know , just not asking for help. And so we do want to make sure that anyone who's listening , the first step , it's okay to ask for help. We actually say asking for help is not a sign of weakness. It's a sign of strength. And we are all here to support them. Yeah.
S1: Yeah. I mean , because you mentioned it's isolating. It's also probably this feeling that you're not doing enough. You're not enough , you know , to especially if you're in that sandwich generation where you're taking care of both your aging parents and your children. Lily.
S4: Yeah , yeah. This is absolutely the I agree , it's I think being a parent of , of young kids on its own is incredibly challenging and a full time job. And to add on to that , becoming a parent for your own parent , um , is a tremendous load. And on top of that , I'm also concerned about my father , who's the primary caregiver and worried about him. And is he taking good care of himself ? You know , I'm losing one parent , but am I going to be losing both ? Um , it's it's it's a tremendous amount of worry that I go through , and I often say wonder , you know , am I am I doing enough ? Am I showing up in the right ways ? Um , and so I do put a lot of burden on myself , I think , and pretty tough on myself.
S1: A lot of pressure there. Yeah. Well , know that you are. And we're going to continue that part of the conversation when we return after the break. Um , up next , we will continue our conversation on family caregiving and the challenges that come with treating those with dementia. Hear more when KPBS Midday Edition returns. Welcome back. You're listening to KPBS Midday Edition. I'm your host , Jade Hindman. Today we're talking about some of the challenges that come from family caregiving. My guest today are social worker Shannon Patel , the Southern caregiver Resource centers , Martha Runyan and Lily Brebner , a family caregiver herself. Um , to start this part of the conversation off , I want to talk about culture and the expectations , or lack thereof , of taking care of our family members as they age. Um , how have you all dealt with the challenges of that ? Martha , I'll start with you.
S2: I think there is an expectation that because in certain cultures that if you are the oldest or that if you are the daughter , that it's your responsibility to take care of your parents. When I became a caregiver , I kind of fit that Description , except that I was taking care of my great aunt. So she wasn't my mother. She wasn't my grandmother. She was my grandmother's sister. And so that's separation of next in line I didn't have. What happened was , is that people did not want to step up. And so I found myself unable to talk to other family members to help me in this caregiving situation. And I've noticed that it's not I'm not an isolated incident. There are a lot of people who are facing the same situation where the family doesn't really you know , they say that you have all this family support , but when it comes down to it , it's not there.
S1: Right ? But and that's that's that culture. But like , what about the mainstream culture in which the which is very much more individualized ? Yes.
S2: We are seeing that society is in San Diego County specifically. We are seeing multi generations living together. And it could be because of the price of housing and everything else that's going up. But really , just because it's easier sometimes to just have different generations living together. But that with that comes the need to have caregivers within those family members to step up , to care for those individuals and is not very much supported by society. Right. You have people who are questioning why are you always taking off at work ? You have this responsibility at work and they don't understand that. Well , my mom is living , uh , she has dementia. I can't leave her all day at home , so I have to take. And so even with our employers , there really needs to be a conversation about supporting family caregivers.
S1:
S3: Um , usually when people find a resource , they always say , I wish I would have found this years ago , or I needed this a decade ago. So not being afraid to to start young and figuring out where you live , what's there. We're lucky in San Diego County to have a lot of resources available , but we just have to make sure people know about them and making sure that the community is being vocal about what's out there to help others when they see someone in need.
S1:
S4: Initially coming in , I felt I did feel very isolated and I felt very alone in my situation. And the more that I spoke up and reached out and asked for help. The more that I saw that , I actually was not so alone in my experience , and it's been so incredibly helpful to have access to these resources to to both really educate me. So I understand , but also just to be connected to community and to to to feel like I'm not alone in this and I'm not the only one that is , is going through this journey. Um , and also like when I have questions , especially about , you know , I'm living with my kids and my mother and that's a lot. It's a lot for my kids to see my aging mother. And so I'm really , really working hard to , you know , show them what this part of life looks like and that it's not it's not the easy part of life , but it is so important and it's so important for us to get to be here for her , for her to be here for us. It's it's a gift , but it's also a challenge. And so having access to resources to help bridge that gap , too , has been tremendous for me.
S1: Taking care of someone who is dealing with living with Alzheimer's. That is an added layer , an added challenge.
S3: They can't control different elements the way that we can , and still kind of trying to piece together how we can prevent triggers in the future , but also how we can really make sense of things that sometimes don't seem like they make sense. Right. So someone accusing someone of stealing something , it's it's easier for them to think they didn't lose it. Right. Why would I have lost something ? Someone must have taken it , right ? And that can be really frustrating for a family. But knowing not to argue , to meet the emotion. Right ? To really try to figure out where we can still help them feel safe , loved and supported in a space where their brain is often very confused and scared. Mhm.
S1: Mhm. How can you tell ? Um , you know , if you're a caregiver , how can you tell the difference between just forgetfulness and aging and then signs of dementia.
S3: So a great rule of thumb is is it affecting their ability to get through their daily routine. Are they forgetting to pay bills on a regular basis where they're now getting , you know , foreclosure notices ? Are they becoming accustomed to not bathing and not realizing that their hygiene is slipping ? Um , maybe they're forgetting to eat and they're losing weight. Everyone forgets things every once in a while , but when it's really starting to impede their ability to function on a daily basis without cues and reminders from others , that's really when we start to be concerned about dementia or major neurocognitive disorder. Hmm.
S1: Hmm.
S3: Unfortunately , I think society is getting better , but oftentimes it's coming at it from a place of love , right ? Um , dad , I've noticed that you seem like you haven't been eating a lot lately , you know ? Is everything okay ? Trying to address maybe underlying medical concerns. First , let's go to a checkup and make sure everything's good with your mouth. You know , your your teeth , your your your GI health. And then when all that's ruled out , it's it's kind of like , okay , let's let's continue to move on through the different specialists to see what might be happening here. I love you , I want to make sure you're okay. Right. Coming at it from that angle , um , often works best.
S1:
S4: And so I was kind of seeing this from a distance. And in other words , not seeing a lot of it or it was it was very difficult for me to sort of assess what was happening. Um , and it's I'm lucky that my mother is in good spirits and has positive mood because that's not always the case. Um , but she was very open to when I did come back and started to witness what was happening. I was pretty direct about it with both her and my father and said , hey , this looks like it's it's progressing , you know , your forgetfulness. Let's go to the doctor. And I was like I said , very lucky that she was open to that. And there wasn't a lot of struggle. But it's really been a lot of communication that has been to happen and difficult , just so difficult to have those conversations and to to be given this news and to process it together as a family , you know , sitting with my mother as she finds out that she has this devastating disease is , um , a moment that , you know , will will be with me forever.
S1: And what do you say to someone who is newly in that position to their just finding out about this diagnosis ? Martha.
S2: We always say education is the key. The more information you can acquire , the more questions you can make the better informed and therefore prepared you will be for this journey. Unfortunately , there is no cure for dementia. Alzheimer's disease. I know that there are researchers working on that , but currently there isn't. And so we really invite caregivers everywhere to find out where they can go for information , resources education. You know , we're really lucky in California. We are the only state in the nation that has a system of caregiver support. We at Southern Caregiver Research Center , we are one of 11 , um , organizations throughout the state that provide very similar resources , information , support , direct programs in the nation. And so it is really imperative that people , first of all , recognize that they are caregivers and as such , that they need to know that they're not alone and therefore start looking at their situation as how else can I create a network of support ? We talked a little bit about earlier about families and how sometimes we might think , well , I'm the only daughter or maybe I'm the only child , so I guess everything falls on me. But you don't have to look at your network of support as family. It could be organizations. It could be your your church group. It could be your neighbor. It could be your friend. It really could be anyone that you rely on for support. And the more you create this network , the more you can rely on them for what you need.
S1: And the need for these resources is growing so much because people are living longer. Absolutely , but not necessarily healthier. No.
S2: No.
S1: Talk to me a bit about that.
S2: We are saying that with longevity comes a great responsibility. Right. We are talking to families about incorporating some wellness and health , you know , healthy outcomes that they can utilize not only for themselves but for the person that they're caring for. Right. Taking time off , uh , maybe enjoying some social time with individuals , but it's also taking care of your health needs. How is your blood pressure ? Is your diabetes under control ? Have you been sleeping well ? Are you managing your stress ? These are all risk factors that collectively combined can lead to very negative health outcomes. And that doesn't help when you're a caregiver , because now there are two of you who are going to need support.
S1:
S3: Please , I hope this helps someone , um , you know , call or click on a website today and really start that next step in your journey. If you feel stuck. You're not alone. We're here to help. Martha.
S1: Martha. Absolutely.
S2: Absolutely. You know , there are more of us caregivers than you realize. A lot of individuals who are your friends , your coworkers. If you start talking to them , you might realize that they're also caregivers. So you're not alone. We are here to support you.
S1: And , Lily.
S4: I echo all of the sentiments that you've both shared. I think that it's it does. It has always felt isolating to me as I've come in , but the reality is that this is much more prevalent than than most of us know. And in talking about it and opening myself up , I'm getting to see what exists and support others around me and get support back from them and share these resources with them as well.
S1: I've been speaking with Shannon Patel. She is a social worker with the George G. Gleaner Alzheimer's Family Centers. Shannon , thank you for being here.
S3: Thank you for having me.
S1: Also , Martha Rendon , she joins us and she is vice president of the Southern Caregiver Resource Center. Martha. Thank you. Thank you. And Lily , who is a family caretaker of her mother and a mother herself. Lily , thank you for sharing your story and experience with us.
S4: Thank you so much.
S1: And we'll have links to some of those resources on our website , KPBS. That's our show for today. I'm your host , Jade Hindman. Thanks for tuning in to Midday Edition. Be sure to have a great day on purpose , everyone.
