Episode Transcript
[00:00:03] Speaker A: If you have someone with Alzheimer's out in public, what I've noticed is that people are actually not very kind or very graceful about it. And so that was a moment where it just kind of helped remind me that there were good people out there who were willing to share these beautiful moments with a stranger.
[00:00:37] Speaker B: Welcome to the Age of Aging, a podcast about living well with an aging brain, produced by the Penn Memory center. I'm Jake Johnson.
[00:00:44] Speaker C: And I'm Terrence Casey. This is the third episode of our inaugural season. In episode one, we talked about how genetics and biomarkers can help reveal our risk of developing age related brain diseases such as Alzheimer's disease. And in episode two, we talked about living well with a purpose. If you haven't heard those episodes, go back and check them out before you jump into today's. Today we're going to talk about the caregiver experience.
There's a story that we tell often in our clinic about a caregiver who came in with his wife. Frustrated while talking about her disease experience. He pounded on his own chest and said to the doctor clearly and loudly, I have Alzheimer's. And he was right. He didn't have a clinical diagnosis, but he had to live with all of the consequences of his wife's disease. She had the symptoms. He had the burden as well. Our caregivers live with emotional, physical, and financial burdens, and yet are often left out of the conversation of Alzheimer's disease and related dementias. And so episode three is dedicated to the caregiverse.
[00:01:52] Speaker B: In our first segment, social worker Kate Leeds will share some self care tips for caregivers. In our second, we have a selection from our friends at the podcast Bob Marathon about support groups available to caregivers. And in our final segment, a conversation with poet and caregiver Alexandra Martinez. Social workers caring for persons with cognitive impairment often tell caregivers that in order to be a good caregiver, you first have to take care of yourself. So to kick things off, for our third episode, we're going to hear some self care tips in order to make sure you're doing just that.
[00:02:32] Speaker D: Hi, my name is Kate Leets. I'm the social worker in Penn Medicine's FTD center, and these are my top three self care tips for caregivers.
My first tip is to get comfortable asking for help. So often, caregivers are searching for support and assistance from their own friends and family members, but aren't sure how to get it. In my experience, I found that asking for specific tasks or specific time periods to be covered is the best way to get consistent support. So for example, instead of saying to your friend, ugh, I really need help, I'm so overwhelmed. I wish someone would support me. You might more directly say to them next Tuesday I have a doctor's appointment at 02:00 p.m. it would be really helpful for me if someone could come stay with my loved one so I can take care of my own needs.
By saying this clearly and directly, I tend to see that people have more luck in getting what they want and getting the support that they need, because oftentimes people don't know how to help. And as demanding as it may seem, when you first start doing it, a lot of people will actually be really grateful to be getting specific asks that they can fulfill to help you and your loved one.
My second tip for caregivers is to keep a journal, and this journal can have a few different purposes. One of the purposes might be to record behaviors you see in your loved one. You might record when the behavior happened, what preceded it, what happened after, and this can help you create a log of potential patterns. You might start to learn what is triggering some of their behaviors or what time of day is better for them in a way that allows you to better ask for support for your loved one and for yourself.
You might also use this journal to document your feelings around some of these behaviors or changes again so you can start to see patterns and figure out when and where you need the most support.
My final tip is to be gentle with yourself. For most people, this is their first time being a caregiver to a loved one with dementia, and unfortunately, there's no rulebook, there's no perfect way to do this, and a lot of folks get discouraged feeling like they're not doing enough or they're not doing things correctly, and that can just lead to a downward spiral. I really encourage folks to acknowledge that they are doing the best they can, that not every day will be perfect or filled with the most perfect activities. And that's okay. You need to take care of yourself and to have some grace in the fact that this is likely a new experience from you and you're also learning as you go.
[00:05:48] Speaker C: I'll start off by saying that I am not a caregiver for an older adult, but I am a caregiver for young children, and I'm often struck by how much of the advice that is given to the former is helpful to the latter. I was thinking about asking for specific help on specific days and realizing that would be much more effective than what I have done in the past. And so it's nice to see that this is generalizable advice, I think for anybody who is caring for another person and not necessarily limiting it to caring for an older adult with cognitive impairment.
[00:06:25] Speaker B: I'm also not a caregiver, but I can imagine that it's easy when you're a caregiver to put self care at the bottom of your priorities when you're taking care of somebody else. But it really is so important. And I think Kate Leeds gives some great tips for making sure that you are prioritizing yourself and are at the best of your capacity, not just for you, but for taking care of another person.
[00:06:51] Speaker C: Yeah, in a vacuum, it's easy to think that martyrdom is the best course of action, that you are being selfless in caring for another person, that you're prioritizing others above yourself. It all sounds very noble, but it's helpful to frame it as in fact you are a better caregiver when you follow tips like this, that you are more effective in the short term, you are more resilient in the long term, and you and your loved one will ultimately have a better experience if you are prioritizing self care in this. And I think some of that martyrdom mentality comes from the lack of open communication about and among caregivers that people really only have their own experience to talk about. And it's why I was really pleased to hear that our next story was going to be about support groups, because support groups are a really good way to combat ignorance and to create a sense of community and understanding in a time that can be really challenging for a lot of individuals. To help tell that story, we worked with our friends over at Bob's last marathon. Bob's last marathon is a podcast created by Lena Chao, who is a caregiver of her husband who was living with Alzheimer's disease, and the podcast brings in expert voices to talk about research, clinical care, and caregiving experiences.
The episode that you're about to hear features Felicia Greenfield, who at the time of recording was the executive director of the Penn Memory Center. Felicia describes the role and importance of support groups in helping caregivers navigate their challenging experiences.
[00:08:48] Speaker E: It goes without saying that receiving a diagnosis of Alzheimer's disease or a related form of dementia is a life changing event, and not only for the person with the diagnosis, it affects each person in the family system.
Hearing a dementia diagnosis can bring on feelings of shock, denial, sadness, anger, isolation, and more. For patients and their families, these feelings are normal, but that doesn't mean you have to bear them alone.
Very few people are able to get through the Alzheimer's journey without support. And while finding good support in your community might feel daunting, it does exist.
Getting the help you need can make all the difference in your well being. As you embark on this new road, support can take many forms, and you may feel the need for more than one type.
Some people welcome the supportive community through their religious affiliations.
If you have a strong religious community, they might refer you to other types of support for help processing your feelings. You might consider seeing a therapist with expertise in aging, dementia or caregiving.
Psychology Today has an online directory that can help you find someone with these qualifications and identify a good fit. Your primary care physician may also be able to provide a referral.
If you feel the need to get educated about Alzheimer's disease, your local Alzheimer's association is a great place to start. In addition to volumes of information about Alzheimer's disease and caregiving, they also offer a free 24 hours helpline.
An occupational therapist specializing in dementia can help you learn how to engage your loved one in meaningful activities and also how to modify your home to help the person with dementia more easily and safely navigate it.
You can tap into a number of creative support networks through Alzheimer's disease research centers or ADRCs at academic institutions. The Penn Memory center where I work is one example. The Penn Memory center at the University of Pennsylvania offers a wide range of helpful services for families living with dementia, and our memory cafe is among the most popular.
Its main goal is to provide a safe, stigma free zone for social engagement and connection.
Once a month, patients and their family caregivers gather in a community space to enjoy pastries, coffee, games, and conversation. We bring in artists and performers for a 30 minutes interactive activity such as live music, dance plays, or painting.
Another of our programs, called Time out, is a respite and companion program that pairs families with college students trained in dementia care.
During scheduled visits at the family's home, students spend time with the person with dementia simply as a companion, while caregivers get a much needed break.
The Penn Memory center also offers expert lectures on a variety of topics ranging from occupational therapy to hospice and palliative care to elder law. But without question, our most popular and in my opinion, most helpful programs are our caregiver classes and support groups.
Caring for the caregiver is a class that teaches people about memory loss and neurodegenerative disorders, with an emphasis on the caregiver's self care. For 2 hours, once a week for seven weeks, we bring dementia caregivers together to learn about the disease, how to optimize their caregiving skills, and how to best take care of themselves while they adjust to their ever changing role as caregivers.
I should note that the label of caregiver can be a difficult one for folks to identify with. We sometimes hear, I'm not a caregiver, I'm her husband. To which we respond, that's right, you're both her husband and her caregiver or care partner. The class includes a lesson on the truly extraordinary role of Alzheimer's caregivers. It's a role that involves providing exceptional care, exceeding usual family relationships. It involves significant expenditures of time, energy, and money over long periods of time, and it involves tasks that can be unpleasant, uncomfortable, psychologically stressful, and physically exhausting.
We put names and definitions on the concepts that are unique to being an Alzheimer's caregiver, creating a framework for demystifying their experience.
Caregiver burden is a term that describes the interplay between the emotional, physical, social, and financial stressors involved in caring for someone with dementia. The phrase ambiguous loss describes the singular challenge of caring for someone who is here physically, but also not here psychologically or emotionally. Introducing these concepts helps dementia caregivers make sense of their new roles and helps caregivers understand why they feel the way they do and perhaps move toward a more positive way of thinking about their situation.
Participants learn how to integrate pleasant activities into their daily lives, how to become behavioral detectives, and how to modify the home environment.
They also learn ways to effectively communicate with the person they care for as well as others in their support network. Through mindfulness exercises, participants practice being in the present moment rather than getting stuck in the past or fretting about the future.
The most valuable aspect of the class is in its shared experience, creating a conduit for connecting. By the end of the class, participants have often developed a strong bond and as a way to stay connected to one another, they often opt to enroll in a caregiver support group.
Support groups focus on the emotional and relational aspects of Alzheimer's caregiving rather than the intellectual. In support groups, the professional serves as a facilitator who defers to the collective group to take the lead, which means deciding together on the topics and providing mutual support.
There's a natural arc to a support group hungry for information. At the beginning, members tend to be fact seekers. They're eager to hear each other's experiences and to learn from each other. They pursue solutions to problems and strategies for planning the unknown steps ahead.
Sticking to the facts is helpful, but from a therapeutic perspective, expressing and understanding the painful emotions that arise is important, and the group setting can help with this process. It's the facilitator's role to take the members to a deeper stage by helping them reach for their feelings.
As groups evolve and members feel more comfortable with one another, sharing and expressing feelings becomes more natural. And this is where the healing happens. As the loved one's dementia progresses, friends and family members may drift away, but the support group friends are always there. Deep friendships can form. They can share sorrows of yet another loss in their loved one's function as well as the joys of becoming grandparents.
Its immensely rewarding to bring strangers together and watch them develop a bond that enables them to nurture and love one another, sometimes to the point where they refer to their support group members as family.
If you feel unsure about joining a group, I do encourage you to try one to get the most out of the group. I also encourage you to actively participate. After all, you have a lot to offer and the point of the group is to both give and receive support.
Keep in mind that as with any emotional relationship, the chemistry matters. So if the first one you try doesn't feel right, please don't give up. Keep trying until you find the right fit. Seeking and finding a group of people going through a shared experience can be a lifeline.
No one chooses an Alzheimer's diagnosis. It's a turning point that can shatter your assumptions about the way the world works. The journey families must endure is long and unsure, and it can be lonesome. Finding connection and support during this difficult time can make all the difference in the well being of the person with dementia and their caregiver.
[00:17:58] Speaker B: I really like hearing this story right after the self care tips because, well, I think there's so many little things that you can do for yourself to make sure that you are feeling your best and being the best caregiver you can be. I think ultimately, finding community is one of the best things you can do in any circumstance. But especially when you're going through something as intense as caregiving, this is an extremely isolating scenario and I think it's really great to remind people that there are a lot of people out there that you can talk to about your experience and are having very similar experiences to you and that you are not alone in this.
[00:18:40] Speaker C: Yeah, it's really easy for anybody to follow advice the day that they read it. In our first segment, we had very practical, simple advice and you can imagine someone hearing that and that day, going home and journaling about how their loved one reacted that day, and then maybe the next day they're still inspired and they do it again. Maybe third or fourth day, they forget about it. And then after that, you're like, well, I've missed my opportunity here. And if you are surrounded by others who are continually offering you this advice or this support and reminding you that you're doing the best that you can, and don't forget you wanted to try to journal. And I don't forget to be specific about your needs once you have that community built in, whether from a professional who's providing the advice in a caregiver class or a peer who is going through a similar experience, that constant reinforcement is how you get into building positive habits that ultimately support you and your loved one.
[00:19:37] Speaker B: I think by going to support groups, a lot of people find that they are relaying an experience and hearing experiences that are often hard to communicate to people that haven't gone through them. And I think that ties really nicely into our next story about someone who expresses her experience with caregiving for her mother through a creative outlet in poetry.
[00:20:02] Speaker C: We first heard about Alexandra Martinez a couple of years ago, and she caught our attention for a couple of different reasons. One, she's younger than a typical caregiver at the Penn Memory center, and two, she was choosing this creative outlet to talk about the caregiving experience. And I'll admit, when we first heard about a young poet talking about a disease of the old, we weren't sure what to expect. And we were really, truly quite moved by her poetry as we were reading it.
[00:20:33] Speaker B: Yeah. So for this next story, we'll hear Alexandra tell her own story through an interview that we conducted with her last year, as well as a selection of three of her poems, which she recorded independently with some music throughout.
[00:20:54] Speaker A: My name is Alexandra Martinez and I am a library worker and poet living in Joshua Tree, California.
My mom was a mexican immigrant. She came to California in the late eighties, and that's where she met my dad. She kind of bounced around from being a stay at home mom to working as a teaching aide at my elementary school. She was always kind of around growing up, even when she was working, because she was working at whatever school I was at. When I got older and moved out to New York for school, she moved out there with me for a while.
That is kind of where the signs of Alzheimer's started coming through.
It was kind of just really stereotypical, I guess is a way to say it. She accused me of stealing money from her, and she would get lost trying to get either to work, come back home. And I didn't really take it as seriously as I probably should have because Alzheimer's isn't really a thing you're thinking about in your mid twenties at all, let alone with your own parents.
She did see a psychiatrist, but the neurologist actually didn't really happen until much later on. She had gone back home to Mexico, and that's when her brothers and sisters also noticed something's not right here. And so they took her to a neurologist in Mexico, and that's when they said she had the amyloid plaques.
I feel like if we had been able to advocate for her when symptoms were showing a little more, then maybe we would have been able to help her out a little bit sooner.
Learning to fly as the sun beat down, I drove my mother to check on the hawks.
She kept staring straight at the sun until I told her to stop.
I asked, what are you doing? She said, learning clouds. I asked, what are you? She said, I'm a road I'm the learning?
I'm you beat down I'm world.
I'm clouds.
So, thankfully, my husband and I made the decision at the end of 2018 to move back to California so I could help take care of my mom. And we had already kind of started being more isolated just because it was just me and my sister kind of trying to take care of her as she was declining. But then the pandemic happened, and there wasn't as many outward distractions. Poetry has been a thing that I have always been kind of doing. Even when I was younger, I was always mostly excelling at writing in school and nothing else. I don't really do pages every morning or anything like that. I really just have these lines and thoughts that pop into my head, and I kind of walk around with them for a couple of weeks or a month, and then it kind of just gets to the point where I feel like all those thoughts and all those lines are something that I need to put down. And then it took eight days to really just sit down and just put on some Tom petty and just really go for it.
I mean, every single poem title is his song titles, but I think for the most part, it's more about the simplicity of it, I think is where he really excelled in his lyrics. So many of them aren't flowery, per se, but they get the point across in a way that is so deep and so that's kind of. I think a lot of people that read the poems kind of tell me, you know, they're so direct, and it really is just a heartbreaker because of the directness.
Walls.
Sundowning is a term used to describe the agitation a person with Alzheimer's experiences in the late afternoon, evening hours.
When my mother first started sundowning, my sister and I rearranged our furniture to crush the big shadows she would see.
I guess it is called sundowning and not sunsetting because one paints a pleasant picture.
Three years ago, she had enough cognition to recognize a sunset, to smile as the sun went over the desert. Even then, she could name a Joshua tree, a yucca, a rabbit. Now her words are slipping. They sound made up, like sundowning.
I don't want to say the nice thing, but, you know, with the pandemic, it did force us all to kind of pause, reset. And so with that time, I would take my mom out to a lot of different botanic gardens around the area, or we would come out to Joshua Tree, which she loved, and just kind of be out in nature with her.
I feel like there's this stage in Alzheimer's where people just become very childlike. And so in some ways, that was very positive because I got to see a sunset through her eyes as almost like this child that I was taking care of, or, you know, these giant trees through her eyes, or even a bird through her eyes. Everything was always so fascinating and beautiful to her during that time, and I really appreciate it and, you know, still do appreciate being able to see the world through her eyes at that point.
A moment that stands out for me is we went out to the California botanic garden, and there was a gentleman who had his binoculars, and he just kind of called us over, like, you have to see this. And so we wandered over, and there's just this giant hawk atop this giant tree. And he put up the binoculars to her, and we both just were able to see this hawk that was pretty far away, but close up through his binoculars. If you have someone with Alzheimer's out in public, what I've noticed is that people are actually not very kind or very graceful about it. And so that was a moment where I. It just kind of helped remind me that there were good people out there who were willing to share these beautiful moments with a stranger.
You got lucky.
It's hard to remember a time when we were free, when days were not structured around someone else who doesn't understand and can't understand how much of what we do is be like planets orbiting her disease. True love is hard to find like finding every single planet and every single constellation and every single galaxy.
Once, early on in her disease, we were all at the planetarium. I saw a placard that explained just how small humans are compared to the solar system.
I took my mom's hand and showed her. And you jumped to simulate an earthquake.
We have been suffering aftershocks ever since.
[00:29:14] Speaker B: I really. I mean, I liked hearing this story because it's. It's very different than some of the other ones we've done before that are a little bit more. Talking about caregiving in a kind of objective way. This one felt really personal. And that's kind of the beauty of art, is that when you get really personal, it becomes universal. And I really felt that way listening to her talk about her experience and talk about her poems. There's such a melancholy to it all. There's a sadness in her poems, but there's also a hopefulness and an optimism in her experience that I really appreciated hearing from her.
[00:29:51] Speaker C: Yeah, she approaches her poetry, but also the caregiving experience. As an artist, I appreciated that. While we've talked in previous conversations about all of these activities to keep your loved one busy and you can take them to this place and that one and have this coffee shop and this concert. Her idea of a caregiving moment is to travel through the botanical garden or Joshua Tree park. And just identify birds and trees and such. It's a very, I think, creative sort of artistic way to approach caregiving. It seems less like a to do list and more of an experience.
It's been a while since we last listened to her poems. But I forgot how much I got hung up on her comparison between sundowning and the sunset. And she said, because the sunset is a pleasant experience, even though you're essentially describing the same thing. But one thing I hadn't really noticed the last time we had listened to this. Is that she then comes back to this idea later on about seeing the sunset through her mother's eyes. So you're right, there's this melancholy, there's this sadness in her poetry. But as she's talking about it, she is, by her own words, pulling in the hopeful thing back into the experience of sundowning. We always hear sundowning as a uniquely negative emotional experience. And sitting and watching a sunset through her mother's eyes is a beautiful sentiment in a pretty challenging time. So it was nice to hear it framed one way and then sort of reframed with that fresh perspective.
[00:31:36] Speaker B: And I think in all of her poems, she has such great imagery. She describes in the last poem, how she'll never understand that there are like, planets orbiting around her. I thought that was just like a great visual to describe what it must feel like to be a caregiver. And to me, who's somebody who's never been a caregiver, that really resonates. Like, I understand that, that image. I think there's something very unique about the medium of poetry and the vividness of her imagery and the straightforwardness, as she said about her writing, that cuts through and anybody can really understand and.
[00:32:13] Speaker C: Connect with a common thread through each of the episodes in age of aging so far has been how we can improve the lives of ourselves, of our caregivers, of our patients, on an individual level and on a center level, through programs that the Penn Memory center has coordinated. But we keep touching on. Ultimately, the way that we can have societal change for healthy brain aging is by establishing communities that are supportive of caregivers and persons living with cognitive impairment. We heard about it when we talked about memory cafes and sort of the need for third spaces that welcome persons with all level of impairment. We talk about it with support groups and supported decision making, that these are initiatives that you really can have if you have the right network around you. And in our last story in this episode, what really stuck out to me was the stranger sharing his binoculars with her and her mother just sharing a beautiful moment with a stranger, as she had described it. I love that moment because we are no longer talking about institutions caring for patients, or even a daughter caring for her mother. We're talking about strangers caring for strangers, regardless of their cognition. And it was a beautiful moment, and to me, a glimmer of hope. That is the direction that we can head, that we're actually truly establishing a world that supports healthy brain aging for all.
And so these poems and others were published. Alexandre Martinez won a contest that would have all these published professionally and printed, and we'll have more information in our show notes about how you can read the rest of those poems or listen to an audio recording of all of them set to music, as the ones in this episode were.
[00:34:18] Speaker B: Thanks for listening to this episode of the Age of Aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD center.
[00:34:31] Speaker C: Contributors include myself and Jake Johnson, as well as Nicolette Kalkovecchia, Marie Engineeri, Jason Carlowish, Kate Kearney, Emily Argent, Meg McCarthy, and Olivia Vizzella.
[00:34:44] Speaker B: More information on the stories you heard today can be found in our show notes and on penmemorycenter.org dot.
