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Dr. Tim Johnston, 0:00
Some of the things that we've seen is that the person with dementia becomes unable to remember if their child is LGBT. So for example, if the child, let's say the child identifies as transgender, and as a part of their transition, they've had surgeries or hormone therapy, that might mean that they look very different than the person with dementia is remembering. So they might be confused as to who this person is, and where their child is, and that conversation can be difficult to navigate. They also might not understand who the caregivers partner is, because they're not remembering that their child has come out as gay. This person of the same sex is now kind of always around and who is this person? Is this your roommate? Is this your friend? And I think that questions like that might be perceived by the caregiver as being really hurtful if they're thinking that the parent is doing this because they don't accept them.
Dr. Regina Koepp, 0:55
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the Psychology of Aging podcast to answer some of the most common questions I get about aging questions about mental health and wellness, changes in the brain like with dementia, relationships and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult or caring for one, you're in the right place. Let's get started.
You know what's so awesome about pride? It lasts all month long. So this week is part two of a two-part series on LGBTQ older adults. Last week, I interviewed Dr. Tim Johnston about the unique needs of LGBTQ older adults. So if you missed that episode, listen to this one and then go back and listen to that one. Today, I'm delighted to interview Dr. Johnston again about LGBTQ caregivers.
If you're a caregiver, you know that caregiving can be rewarding and incredibly challenging, all at the same time. If you're an LGBTQ caregiver, you'll have some unique challenges that straight caregivers don't typically have to face, which when I'm thinking about straight off the bat, is that there are still healthcare laws that privilege biological families over your chosen one. This is improving, but we're still not there yet. So LGBTQ caregivers also have some unique statistics. More than half of all LGBTQ people who are receiving care are receiving care from their partner, and almost a quarter 24% receive care from a friend. But sadly, LGBTQ caregivers are more likely to be isolated while providing care and have poorer physical and mental health outcomes than straight caregivers. This is why it's so important that there are programs like SAGE, which is a national advocacy and services organization that's been looking out for LGBTQ older adults since 1978. So what does SAGE do? SAGE builds welcoming communities and keeps LGBTQ issues and the national conversation. And this ensures a fulfilling future for all LGBT older adults and caregivers. Like I mentioned just a minute ago. Today I'm going to be interviewing Dr. Tim Johnston again. And let me remind you about who he is and what he does. So Dr. Tim Johnston is the Senior Director of national projects at SAGE. In this role he oversees SAGECare Cultural Competency training programs, and national partnerships with other advocacy organizations. Tim is author of Welcoming LGBT Residents: A Practical Guide for Senior Living Staff, which is the first comprehensive books on how to create a positive and safer experience for LGBT older adults in senior living settings.
Can you start by telling us a little bit about LGBTQ caregivers?
Dr. Tim Johnston 4:32
Absolutely. So we know from the research that LGBT people are more likely to be caregivers for a family member. We don't know exactly why this is the case. But my suspicion is that it's because LGBT people are less likely to have children. So their family might perceive that they then have more space and capacity to be providing care, even though that might not necessarily be the case. But the caregiving relationship is very intense. It's very intimate, it's very draining, and it's a tricky relationship to navigate. So if you are both figuring out how to care for, for example, a parent, and then also your LGBT identity is a factor in that relationship. It could be even more draining. We also know that LGBT caregivers are less likely to reach out for respite care and other services. In our last podcast, we talked about some fears around accessing services and not being sure how people will treat you. So for example, an LGBT caregiver might not feel comfortable going to a general caregiving support group, because they won't be sure how open they can be, or if their identity would then make them feel isolated within that group. So it's a group of folks who there's both unique dynamics in the relationship with the person they're caring for, but also then how they're situated within the larger system of support networks.
Dr. Regina Koepp 5:59
Yes, so there's the quality of the relationship of the party they're caring for. And then there's the quality of the relationship with society, and the resources available in the healthcare system. So not only does the LGBTQ caregiver have their own health providers, they're also helping their loved ones. To navigate the health system. Yeah, that is a layer of complexity. Now, last time we spoke about older LGBTQ folks with dementia, can you speak a little bit about the caregiver relationship when caring for somebody with dementia?
Dr. Tim Johnston 6:35
Absolutely. I think that some of the things that we've seen is that the person with dementia becomes unable to remember if their child is LGBT. So for example, if the child, let's say the child identifies as transgender, and as a part of their transition, they've had surgeries or hormone therapy, that might mean that they look very different than the person with dementia is remembering. So they might be confused as to who this person is, and where their child is, and that conversation can be difficult to navigate. They also might not understand who the caregivers partner is, because they're not remembering that their child has come out as gay. This person of the same sex is now kind of always around and who is this person? Is this your roommate? Is this your friend? And I think that questions like that might be perceived by the caregiver as being really hurtful if they're thinking that the parent is doing this because they don't accept them, or because they're trying to be hurtful intentionally. So a lot of times when I'm working with caregivers, one of the most important things you can do is really give them a sense of what dementia does to a person and the disease process so that they can help take a step back and think, what is my parents reality right now? And they're not doing this to hurt me. They're doing this because they're living in a different time. And they're not remembering things in the way they would if they were with us here and 2020.
Dr. Regina Koepp 8:02
Yeah,well, but I can imagine it hits some of those wounds like the last time we were talking about how unsafe it is and how vulnerable it is to come out, depending on what they're coming out process was like, and then if they were with a parent who didn't recognize them or validate their, their identity, and then had to come out all over again, over and over, I mean, just how complicated that must be. I'm starting to get stressed out for that person.
Dr. Tim Johnston 8:31
I mean, you know, it can be very difficult when you're caregiving for someone with dementia when they, you know, for example, are asking the same question every three minutes. But if that question is loaded with your experience of their reaction to your first coming out, that's a very different interaction to be having. And I think, as caregivers, you just have to figure out different strategies to handle it. You know, on one day, you might be fine saying, Oh, that's Larry, my roommate, but on a different day, you might really want to correct the person and figuring out what is going to be distressing for the person with dementia and what is going to get them to a place where they're feeling calmer and less agitated.
Dr. Regina Koepp 9:13
Yeah, there's a lot of selflessness there.
Dr. Tim Johnston 9:15
Dr. Regina Koepp 9:17
For Larry too. He might be like uh no, we're actually married. I pay the mortgage. So I pay the mortgage for the house that you're cared for in. So we're gonna have to acknowledge me a little bit.
Dr. Tim Johnston 9:28
Dr. Regina Koepp 9:31
Just but just the level of selflessness. And then I wonder, you know, I wonder about also then the boundaries there. And I work with a lot of reluctant caregivers or resentful caregivers. And especially I can imagine if the coming out process was traumatic and painful, or there was a long period of estrangement and then reunion when the parent parent is sick, just how complicated that can all be. And then so you might not have the answer for this because I haven't really thought about how to ask it... but I just am thinking about the room for boundaries like how important boundaries are and, and even emotional boundaries with that. So maybe you just have your blanket statement that you give your parent with dementia or your loved one with dementia and but just to find a way to protect your own sense of self and integrity if it had not been protected in the past by the your parent who needed to have protected it. I mean it I think it just... for me, it conjures up so many of the attachment injuries that can happen in family with the coming out process. And I don't know, there's no question in there. It's just to reflect on how complicated it all is.
Dr. Tim Johnston 10:43
Well, and I think, you know, in terms of boundaries, there could be some relatively clear boundaries that could be set, for example, like I know that I can only be a caregiver for four days in a row without a day off. Like I'm just setting boundaries in terms of time and capacity. But you know, I want to recognize that a minute ago I said, an important thing is to educate the caregiver, that this is not intentional. It's a symptom of the disease. But I also want to affirm that you can recognize that rationally but still experience it as hurtful and kind of setting that boundary with yourself to say, I get that this isn't happening on purpose, but it's still really causing a lot of hurt for me. So my boundary is that like, I need to tag my sister in for a week to come and act as a caregiver or this is just like too overwhelming and to be sensitive to that.
Dr. Regina Koepp 11:35
Thank you for saying that. Yes, I think there's an intellectual understanding and an emotional truth. And, and that recognizing your limits and when you need when you need a break.
Dr. Tim Johnston 11:49
It's nice when those two things match up. But I think we all know that it's not a one for one.
Dr. Regina Koepp 11:55
Oh, and especially with a person with dementia, because their brain is constantly changing. And so you could have a new normal and then in two months from now, it's completely different. And, and so you always have to be calibrating and changing and recalibrating.
Dr. Tim Johnston 11:54
Dr. Regina Koepp 12:11
What recommendations do you have for LGBTQ caregivers for managing stress? Promoting wellness for themselves. So we talked a little bit about boundaries, what else would you suggest?
Dr. Tim Johnston 12:23
So I think one thing is to really keep track of if you're starting to feel isolated in your role as a caregiver. So I think one, people might be isolated because they feel as though they can't leave the person they're caring for. So it becomes difficult to maintain social ties or being able to get a break. But I also think there's a kind of stigma around caregiving as well, and people might not want to talk about how tough it is, or they might, there could be some embarrassment about their family member and some of the behaviors that they're exhibiting so they just try to kind of keep it in the family. And those can be really isolating feelings. So being able to recognize when you need a break and reach out to talk to other caregivers who can affirm your experience, I think is going to be an important way to avoid burnout. And to think creatively about what your network looks like, we have some care planning guides and some information for caregivers that I can give you the link to that really get you thinking about, okay, what are the local services that could help me out? Is there a community center? Is there an LGBT Center, a friendly visitor program, and we've also in these guides that I'll provide to you given some sample language about how to ask for that help, and how to create a care schedule and a care plan so that you don't feel as though the entire burden is on you all the time. And then I would say, you know, general advice that's always given to caregivers, which is to try to maintain a healthy diet, you know, maintain exercise routines that you're accustomed to and try to keep some sense of normalcy while you're also navigating the caregiver relationship.
Dr. Regina Koepp 14:13
Yes, thank you for saying that because that also reminds me of the preventive health care recommendations that you had for helping older LGBTQ folks as well, for caregivers, prioritizing your own health as well. So going to your own doctor's office and using the tips from the last podcast on how to check out if your providers offices are affirming for you. Can you talk a little bit about the initiative? So so there are those resources that you were talking about? And those are guides care guides, you're saying that we can link to in the show notes?
Dr. Tim Johnston 14:48
Yeah. So we have a couple of different informational guides. The two that I'll focus on one of them is a kind of general state of caregiving within the LGBT community. And it also has some information specifically about some of the stresses that LGBT care providers face that others may not. The second guide is really kind of focused on let's say, I know that I'm going in for surgery and I'm going to need some care after the fact. What can I do beforehand to set up that care relationship and care network so that after the fact I'm able to feel supported? So that's something that's a little bit more like a tool to empower the LGBT older adult. But I think there's a lot in that guide that a caregiver could think about in terms of building out a broader care network for their loved one.
Dr. Regina Koepp 15:41
Oh, sure. And caregivers get sick, sick and have surgeries too. So, caregivers often ask, you know, I'm the one who gives care. So who's going to care for me when I need it? And so this guide helps you as a caregiver to find your care community when you need it.
Dr. Tim Johnston 15:56
Dr. Regina Koepp 15:57
Great. What are some of the unique Do you know offhand? Tim, what some of the unique concerns of caregivers are? So you're saying that there was a guide with some of those unique concerns?
Dr. Tim Johnston 16:10
Yeah, we've discussed some of them before (previously) but it's fear of discrimination when they reach out for supportive services, being unsure how people will react to them, if they disclose as an LGBT person, the family dynamics that we spoke about, one additional thing that I'll point out is that there is definitely ageism within the LGBT community, and there's ageism in our society at large, but I think some LGBT folks might really not have thought a lot about aging and caregiving in the past, and suddenly they're put into this role, and might be kind of doubly than hesitant to reach out and talk about what's going on because there isn't really a community space to do so. So if you think about it, like I'm, I live here in State College, Pennsylvania, and one of the main places that LGBT folks congregate is the one gay bar downtown. And it's often like a lot of undergraduates and graduate students kind of a young vibe. It's a great space. But is that going to be a space where as a caregiver I go to try to connect with someone to talk about my mom's dementia? Probably not. So recognizing that the resources LGBT caregivers might have already created for themselves may not be places they would automatically turn to for help in the specific part of their life.
Dr. Regina Koepp 17:38
Mm hmm. That's great. Are there LGBTQ specific caregiver groups do you know?
Dr. Tim Johnston 17:45
So there are definitely LGBT specific support networks out there. So places to look would be an LGBT community center. There could be local caregiver support organizations that have LGBT subgroups. I know a lot of chapters of the Alzheimer's Association have both groups that are explicitly welcoming to LGBT members and some of them also have LGBT subgroups that meet. So it's really just a matter of looking at what's available to you in your area. And then kind of, as we talked about before vetting it to see if it would be a safe space. And there are an increasing number of support groups online. So there are a number of Facebook groups for LGBT caregivers. I would imagine people are starting to do this over zoom as well. So that really could help reach folks who might not have access to a physical center or meeting group.
Dr. Regina Koepp 18:41
Great, thank you think that will help so many people honestly. And and what we know is that older adults are caring for their older adult parents. So there are plenty of 65 to 75 year old LGBTQ folks caring for their much older parents. So that's a phenomenon we're seeing more in the caregiving structure as well as older adults caring for older adults.
Dr. Tim Johnston 19:07
Yeah, and that's particularly true for LGBT older adults. For a lot of these folks, especially if they're not in touch with their biological or legal families. Their main support network are often people in their same age cohort. So as those folks are also experiencing illness or declines in health, it makes it more difficult for them to be providing that informal care.
Dr. Regina Koepp 19:31
Mm hmm. And partners who've been together a long time, I've done plenty of therapy at end of life and with caregivers with one member of the partnership who's ill, or unwell, or end of life and the other who's more vital, and doing a lot of end of life work even with couples who've been together for decades, and are now more open about their couple-ship.
Dr. Tim Johnston 20:01
Absolutely. And I think one thing we can all do to make caregiving better for everyone is to use that more expansive definition of family. So for example, there's a older woman in my community here, she's not LGBT, but she doesn't really have any family in the area. And she has done such a great job of cultivating people in the community who now really are her family. So, you know, I'm part of a group of people who visit her regularly and advocate for her with the staff of the skilled nursing facility. And it's interesting because sometimes people will react to us like, well, who are you like, you're just her neighbor. And I think as long as we can all move past thinking that this is only an appropriate role for biological family, but could be an equally appropriate role for community members, I think that will strengthen all of our care networks, frankly.
Dr. Regina Koepp 20:54
Yes, I totally agree. Then how to protect people from exploitation. So then if we start to shift our thinking that we can all be a part of, you know, we can all be chosen family, then how to as providers. So this is the question and I would imagine as providers I work in a medical system. Then, how do we protect the person from exploitation? If we don't know the history of this relationship and everybody's family?
Dr. Tim Johnston 21:14
Yeah, that's an excellent question. What I first thought when you asked that very good question was, you still you choose your chosen family. So, you know, encouraging us to like, be careful in who we invest that kind of time in. But the responsibilities shouldn't only be on the shoulders of the older person. So I think, you know, something like signing over durable power of attorney that's got to be really serious. And I think that there should be people involved to really know who that person is. And yes, it's the older adult's choice, but I think providers could ask questions to make sure that this feels right to them and that it is a trustworthy person. But otherwise, I think it's, it's the same you would do if the person was primarily being visited by a son or a daughter, where you also don't know if that person is trustworthy. So you just look for the signs you see if there are any red flags you check in to make sure that it appears that the boundaries are appropriate and healthy. And then if you see something that is alarming, you would intervene in the same way.
Dr. Regina Koepp 22:32
Mm hmm. Great. What can allies and health professionals do to create more affirming spaces for LGBTQ identified caregivers?
Dr. Tim Johnston 22:42
Yeah, I think the first thing is closely related to what we were just discussing, which is to make sure that you have a broad definition of family, and that you're clear that you know a person's family is who they say it is, and that they deserve that support and respect. I think if you are a provider of supports for caregivers, you can really make it clear that LGBT folks are welcome. And you could think back to some of the suggestions from our previous conversation to really lower any barriers or fears that someone might have when reaching out.
Dr. Regina Koepp 23:15
So that includes like having some symbolism in the office of rainbow flags or rainbows or safe spaces or an anti-discrimination policy, being prepared if people ask you, do you treat other LGBTQ folks?
Dr. Tim Johnston 23:31
Precisely, yeah. And in this context, organizationally, you could decide if what the community needs is for you to just make sure that people are aware that your services are really affirming, or is there enough demand for an LGBT specific online posting board or community event or something like that, that would help draw people out?
Dr. Regina Koepp 23:52
Or a caregiver group if you're a local Alzheimer's Association that doesn't have a caregiver group yet for LGBTQ folks.Yeah. SAGE has a really great caregiving page actually on your website. So I'll link to that in the show notes. And there's some fact sheets and some resources. Maybe this is where the care guides might be if they're not there, then we'll I'll have another link to them in the show notes as well. But I really appreciate your time and attention and helping to educate me and all of our listeners about what we can do to improve the lives of LGBTQ caregivers, because they have an important role and a valued role in caring for older adults who are more vulnerable places in their lives. So I just want to give a big shout out to all of the LGBTQ caregivers out there who are engaging in acts of selflessness, and hopefully honoring their own boundaries with it all, too. So thank you, Tim. I really appreciate it. Down the road when COVID has kind of lightened up a bit. I would love to have you on to talk about creating affirming communities for senior living communities. The book that you wrote, that would be so cool.
Dr. Tim Johnston 25:10
Yeah, absolutely. Thank you very much for having me on the podcast and for helping to raise the topic of LGBT aging, really appreciate it.
Dr. Regina Koepp 25:19
And Happy Pride Month
Dr. Tim Johnston 25:21
Happy Pride, yeah.
Dr. Regina Koepp 25:23
Rainbows and high fives and virtual hugs. If you like this episode be sure to subscribe and leave a review subscriptions and reviews help people to find this show. And here's why this is so very important. Older adults and LGBT older adults and LGBTQ caregivers are often left out of the conversation when it comes to mental health and wellness. So do your part to include them by subscribing and leaving a review. When you subscribe and leave a review, it makes it easier for people when they're searching for resources on caring for older adults and their family. So take a minute, just a minute and do it. I really really appreciate it. As always, the information shared in this episode is for educational purposes only and should not take the place of licensed medical or mental health care. I'll see you next week, same time, same place. Lots of love to you and your family. Bye for now.
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