Episode Transcript
[00:00:02] Speaker A: And then the month later I got noticed that I got a full ride to Brown University and I had to choose between staying home and being a full time caregiver or taking the full ride to Brown.
[00:00:24] 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.
[00:00:32] Speaker C: And I'm Terrence Casey.
Before we jump into today's story, we want to address some Alzheimer's news that broke since our last episode.
On May 16, the U.S. food and Drug Administration approved a blood test that can be used to assist with the diagnosis of Alzheimer's disease in adults over the age of 55.
Before this, expensive PET scans were required to measure amyloid and tau, hallmarks of the disease in the brain. We'll talk blood tests more thoroughly in a future episode. For now, we'll leave you with some excerpts from a recent Science Friday episode where Age of Aging executive producer and Penn Memory center co director Dr. Jason Karlowish explained why this is a pivotal, transformative moment for the.
[00:01:21] Speaker D: The FDA has approved a blood test to diagnose Alzheimer's disease. It's the first of its kind, and it measures the levels of amyloid and tau proteins in a patient's blood, two major biomarkers of the disease.
The test is approved for patients over 55 who are experiencing cognitive impairments. Until now, getting an official Alzheimer's diagnosis was costly and out of reach for many patients. So here to tell us more about this diagnostic and what it means for patients is Dr. Jason Karlewish, professor of medicine, medical ethics and health policy and neurology at the University of Pennsylvania's Perelman School of Medicine and co director of the Penn Memory center, based in Philadelphia, Pennsylvania. Jason, welcome back to SCIENCE Friday.
[00:02:03] Speaker E: Great to be here.
[00:02:04] Speaker D: Hi, Flora, will you put this in context for us? How big of a deal is this new blood test?
[00:02:11] Speaker E: This is big.
It's revolutionary. And I like that word. It's a word, you know, maybe is a little overused in science. Everything's a revolution, just like every kid's, an honor. But this truly is revolutionary.
[00:02:23] Speaker D: Why? Why is it revolutionary?
[00:02:25] Speaker E: Well, once upon a time, but not too long ago, a diagnosis of the cause of a person's dementia was hedged with awful uncertainties, you know, probable Alzheimer's. And the answer could only occur until you died. And then the pathologist would get all the brain tissue, slice it up and say, this is what I'm seeing. It was kind of gruesome, you know, and no wonder people, you know, kind of avoided Seeing me, perhaps. Because if you can't tell me really what's wrong, what's the point of seeing you? I disagreed with that then. I still do now. But these test suddenly say, allow me, within a matter of days after presentation at the Penn Memory center, to tell a patient the cause of your cognitive impairments is Alzheimer's disease or is not Alzheimer's disease. That's huge. That was. I was not doing that a year ago.
[00:03:10] Speaker D: That's amazing. I mean, what is the blood test measuring exactly?
[00:03:14] Speaker F: Yeah.
[00:03:14] Speaker E: So the blood test measures a.
A fragment of the tau protein that is broken off and is in the blood. And the tau protein is one of the components of what we call the tau tangles that are one of the pathologic hallmarks of Alzheimer's. The test also measures a fragment of the beta amyloid protein, which is another one of the pathologic hallmarks of Alzheimer's. And we can measure it in blood and then made into a little ratio, which kind of takes out some of the noise that occur inherently. In all these measures, you can set a cut point that gives a clinician such as myself decent confidence that, you know, this patient's brain contains levels of amyloid protein and tau protein that are consistent with the pathologic presentation of Alzheimer's. It's a test for pathology. It's not a test for dementia.
[00:04:02] Speaker D: Explain that distinction. It's a test to say something has happened in your brain, but not the effects of what those changes are.
[00:04:10] Speaker E: Exactly, exactly. And, you know, a very important point you made was this is a test for people who have cognitive impairment. Impairment that now needs an explanation. When many people think about Alzheimer's, they think, oh, you mean dementia. And when I think of Alzheimer's, I think of, no, the pathology that can cause dementia, just like Lewy body pathology causes Lewy body disease, et cetera. And this test measures the pathologies that explain why a person has cognitive impairment. And so it's not the test that you start with. When I see you in the clinic at the memory center. The test I would start with would be a detailed history and exam to determine whether there is cognitive impairment and if there is, is Alzheimer's in the differential. And if it is, I might order this test, of course, after we talk about it.
[00:05:04] Speaker F: Huge thanks to Science Friday for letting us use that excerpt from their interview with Dr. Karlewish. If you want to listen to the whole thing, it is linked in our show notes.
So at the Penn Memory center and clinics across the country, the average age that people come in with memory issues looking for a diagnosis is around 70 to 75.
And that usually means that caregivers are often spouses, which means they're usually around the same age or an adult child about 20 to 30 years younger than them. But there's something referred to as early onset dementia, and this was something I didn't know about before we started this episode. And this is a kind of dementia that impacts people younger than 65, and it often results in caregivers that are much younger than we typically expect from a caregiver. Instead of a middle aged adult child taking care of their parent that's retired in their 70s or 80s, you can have 20 somethings or even teenagers taking on that caregiving role and caring for their parent who might be in their 50s.
So that comes with it. As you can expect a lot of different complications, a lot of younger caregivers are going through a time of life that they didn't expect to be taken care of a parent. In fact, many of them might be distancing themselves from their parents, as young people often do.
So for today's episode, we wanted to cover early onset caregiving for two reasons.
First, it's an incredibly intense and unique experience that does not get covered enough. The challenges that young caregivers face is almost impossible to imagine. And the second reason is that early onset caregiving also gives us a window into caregiving. Generally, how traumatic a dementia diagnosis can be, the thousands of decisions you have to make as a caregiver, the confusion, the feelings of loss that you experience as a caregiver, are all exemplified in the two young people that I talked to today. I really appreciated them sharing both of their stories, and I hope they resonate with you just as much as they did with me.
Paige Sonsale, originally from Washington State, returned home from a two year fellowship in Germany to find her mother's house in disarray.
[00:07:27] Speaker A: She had indebted taxes for two years. She was behind on the mortgage. She didn't pay any bills in general. A lot of things in the house were broken. She just never fixed them. It was just super apparent that she was really losing her memory on almost everything. She did leave her contacts in her eyes for a couple months, and she had a huge eye infection because of that, too.
[00:07:48] Speaker F: During her fellowship, Paige had received concerning calls from her mother, but assumed it was due to grief from her father who had passed. Right before Paige had left on her.
[00:07:56] Speaker A: Fellowship, I would get phone calls from her and there would be some questions that she's already asked me, and then she would call back again maybe 10 minutes later and ask me the same questions. I thought that my mom was obviously just like in a bunch of grieving moan and so she was like kind of losing her memory on certain stuff. She's always been kind of like a quirky lady. So I didn't really make a jump to say, oh, she's sick, something's wrong with her. I just kind of thought like, I don't know, she's just acting a little off. But nothing to be concerned about.
[00:08:27] Speaker F: After a year of going to different doctors, Paige's mother was diagnosed with Alzheimer's disease and at 21 years old, Paige became a caregiver.
[00:08:37] Speaker A: It took us about a year to find finally get a diagnosis and she was diagnosed with early onset Alzheimer's at the age of 59. It was almost to the day of when my dad passed.
[00:08:49] Speaker F: Early onset or younger onset Alzheimer's is a form of Alzheimer's disease that occurs in adults younger than 65.5-6% of those diagnosed with the disease will have early onset Alzheimer's.
Just as a reminder, Alzheimer's is a neurodegenerative disease which often results in dementia. Dementia is a more generalized term to describe loss in memory, language and reasoning.
So early onset dementia is the more all encompassing term I will use going forward.
Early onset caregiving presents with it unique challenges because it often puts the partners or the children of those with dementia in a caregiving role at a time they didn't expect.
But in many ways, early onset caregiving amplifies the caregiving experience, revealing the many complexities, subtle tragedies and painful decisions caregivers have to face on a daily basis.
Only a month after her mother's diagnosis, Paige was confronted with one of the hardest decisions of her life.
[00:09:50] Speaker A: And then the month later I got noticed that I got a full ride to Brown University and I had to choose between staying home and being a full time caregiver or taking the full rights of Brown.
[00:10:03] Speaker B: Developing a condition like dementia is a chaotic life altering event that reverberates through the people that surround it. Nowhere is this more clear than the children of those with early onset dementia already experiencing a time of life that is vulnerable and turbulent. Paige's loss of her father and her mother's development of dementia left her in a truly tragic position.
Grieving for her father, caring for her mother, and choosing how much she should prioritize her own life and goals. And on top of it all, she was doing it alone.
Paige began looking for support groups and found Lorenzo's house An organization created in 2021 to support the children and families of those with early onset dementia. Here's founder Diana Coase, who began Lorenzo's House as the partner of someone with early onset dementia.
[00:10:54] Speaker G: So the, the story really started with love. I met my husband Lorenzo the night I moved to Chicago. And some 30 years later, we had built a family, had two young sons and what I call a diagnosis of the family. My husband Lorenzo was diagnosed with younger onset Alzheimer's. I was in urban education for years, so my world was building schools on the south side of Chicago. And I thought, well, maybe that skill set needs to be used someplace else and maybe what I need to do is bring that to the dementia space. Because what I found is that there were just no resources for us. I couldn't find anyone who matched our profile. So I founded Lorenzo's House out of our son's bedroom in 2021. And it was really so that I could find people who were like our family. And now, five years later, we are now serving families across this country and this globe in so many beautiful ways.
[00:11:52] Speaker B: Programs lead Patti LaFleur came to Lorenzo's House after her mother developed early onset dementia.
[00:11:58] Speaker H: We heal in community and build connections and connect other families with each other. And we advocate for dementia justice. So we work to dismantle the stigma that can be so thick. Us as a Lorenzo's House team, but mostly our young people, our sons and daughters. So they're looking for a space, space for community, but they're also looking for a place to fight back and raise awareness.
[00:12:23] Speaker F: Lorenzo's House offers various programs to accomplish this, including a one on one match that connects peers of similar profiles that live nearby where they're able to chat and even meet up. There are also all girls and all boys virtual support groups as well as virtual support groups for different ages that go as young as 4 and up to 17 years old.
Each group tackles the topic of their parents brain change in different ways suited to their particular age.
[00:12:52] Speaker I: For many, many years I would ask my mom, is there any other kids? Can we find any other kids?
[00:12:58] Speaker F: Sierra was 8 years old when her father was diagnosed with early onset dementia.
[00:13:03] Speaker I: I'm Sierra. I live in south pasadena, California. I'm 16 and I am a sophomore in high school.
Most of the kids at my school like if I tell them their first reaction is not really like very understanding. I always felt like these people will care about me and try to understand but never fully understand.
My dad was a producer, so he was very like his day to day life before then was like going and doing all these things and like having a ton of things to do. So when he did get diagnosed and then all those things kind of stopped. It was hard for him to really settle. He. He couldn't really just sit down and do nothing, so. So we would give him call sheets and things and then we would give him, like, drawing things and then he would walk our dog and stuff like that.
[00:13:47] Speaker B: Her father's dementia put Sierra in a position most kids her age will never experience.
She was a daughter, but also often had to step in to be a caregiver.
[00:13:56] Speaker I: My mom was working at the time, and so we had a bunch of different people come in to both take care of my dad and then also be with me.
But then it was also really difficult because sometimes even though these were like trained professionals, there was a lot of instances where my dad would like, lock them out of the house and then I would have to come home and then kind of calm the situation. And I think I would also feel like a lot of time I wanted to step in because this is my family and my dad. My mom also tried to, like, have me live a so called, like, normal life and tried to not shield me from it, let me see it, but then also let me live my own childhood. But I definitely feel like with her being away, I would kind of come home and have to, like, help a lot.
[00:14:43] Speaker F: One of the most common and difficult aspects of having a loved one develop. Dementia is a concept known as ambiguous loss.
These are feelings of loss that are not associated with a person's death.
For the children of those with early onset dementia, these feelings can often come about during big life moments.
Here's Patty again.
[00:15:03] Speaker H: I was graduating from college, I was getting married, I was navigating these early parts of my career, and I needed my mom as this best friend and advice giver. But she was changing and she needed me to show up, to offer her advice, to support her, to be that shoulder to cry on for her when she had been that person for me. And I didn't realize at the time, but I was experiencing some really deep grief. I was experiencing, experiencing anticipatory grief while she was still here.
[00:15:33] Speaker B: Support groups like the ones at Lorenzo's house also allow for the children of those with early onset dementia to work through their particular circumstances.
Paige, who was offered a full ride to Brown after her mother was diagnosed, was encouraged by her group at Lorenzo's house to pursue her college education, even if it meant being on the other side of the country from her mother.
[00:15:56] Speaker A: And they told me to live my life and you'll figure out the rest of how to help your mom. And I. I kind of also thought on my own too, that I could help my mom and I could help more families if I went to school. Because I started making Alzheimer's and platforming voices of young caregivers an objective of mine while I'm in college. And I think if I were to stay at home and be a full time caregiver, my mental health would have completely dropped and I'd rather deal with the stress from far away rather than deal with it at home. One thing about my mom is she's incredibly stubborn and also incredibly in denial about her disease.
So she was in the room when the doctor told her the news and she just kind of brushed it off and said that's bullshit. And so she never has accepted that she has a memory issue.
[00:16:44] Speaker B: Paige's unique situation with her mother's dementia puts her in a constant place of stress that her mother will hurt herself or someone else.
Especially as Paige is now studying abroad in Spain and is even further from home.
[00:16:58] Speaker A: I've tried getting things in place of like, hey, like you could have a caregiver that just comes by in the mornings and makes sure that you take your pills and can watch the dog. She says that she doesn't need a babysitter. So any sort of thing I put in place, she'll also completely throw it away or say that she's fine. So the advice that I got from a elder law attorney is to wait for the explosion. Because of how stubborn my mom is, most people who meet her don't think there's a problem because of how charismatic she is. Like, she's done this all her life. Like she can talk her way out of everything. Basically. She still has a lot of that personality, but on top of choices that are just a danger to herself and a danger to others. Like she got scammed two weeks ago by a online dating site and she sent a guy $5,000. Like I'm the person who's like calling the police with a nine hour time difference to make sure that this doesn't happen again. I'm calling the banks to lock up all her accounts. So there's fires that I put out not every single day, but like pretty frequently.
[00:18:02] Speaker B: At 23 years old, Paige is in charge of her mother's finances, calls friends frequently to check on her, and manages doordashes so that her mom doesn't eat rotten food in the house.
At one point, Paige said her mom was convinced someone was stealing her food and started telling Paige that she wanted to buy a gun. So Paige had to file an extreme risk protection order to make sure she couldn't purchase a firearm.
[00:18:26] Speaker A: The first time I went to court I actually had to skip class for it too. They denied the request because there wasn't sufficient evidence. So then I had to redo it again and get more evidence from neighbors of who she talked to that she was looking to buy a gun. And the next court date that I had, they finally did it and she's theoretically banned from getting a firearm. But I don't really know how the process would work if she went to Walmart.
[00:18:50] Speaker B: Paige manages all of this stress so far from home in an attempt to live a semblance of a normal college student's life.
She said she's been loving going to Brown so far and studying abroad in Spain.
Her freshman year she took an Africana Studies class where she made a documentary about products for Black women's natural hair that went to the Brown Film Festival and showed in New York and Los Angeles.
She said she's interested now in documentary filmmaking around early onset Alzheimer's and dementia.
[00:19:21] Speaker A: I did a whole ethnography project last semester that asked young caregivers from the Lorenzo's house to join me for a series of weekly zoom calls to talk about when do young caregivers choose to live their life versus put it on hold for the parent with dementia and then what do these choices mean for the trajectory of the rest of our lives? I think next year I want to start diving more into the five year look back rule with Medicaid because that's something that's hurting my family right now and it's hurting thousands of families across the US where Medicaid basically says that if your parent needs long term care such as like a memory care facility or an in home caregiver and you can't afford it because it's $100,000 a year, then Medicaid will put a lien against your home for the sticker price, the memory care facility or the cost of the caregiver. And that means that people's houses are getting dispossessed all across the country to pay for the care of their parent. And it wouldn't be an issue if my dad was still alive because Medicaid says that the spouse needs somewhere to live. But Medicaid doesn't recognize that two young kids who are in college also might need somewhere to live and so we don't qualify because of that.
[00:20:32] Speaker B: Paige said ultimately it's her friends and her support groups at Lorenzo's that keeps her grounded through all of it.
[00:20:38] Speaker A: These can be people who are like best friends from growing up or mentors from my high school now, people from support groups, people from organizations that deal with Alzheimer's. I feel like I've built a circle where I can turn to several different people for support. Even when the whole scammer thing was going on too. I first called two or three people to help me talk to the police because my phone wasn't reaching the US Right now. And so when I'm in trouble, like, I have a ton of people who I can turn to. I think part of the culture in the US Too is we feel there's a burden of asking for help. And I feel like when I'm living here in Spain, I'm seeing more people take care of other people, more I'm seeing just there's more of a community based support group. So I think just ingraining this, it takes a village to really help somebody with Alzheimer's and somebody with dementia is something that's really, really crucial for caregivers.
[00:21:31] Speaker B: Lorenzo's House will hold their Youth Summit this year in Chicago on June 20 and will feature hundreds of young people impacted by early onset dementia, as well as experts in the field.
Both Paige and Sierra will be youth leaders this year.
If you want to learn more, more information will be in our show notes. Thanks for listening.
[00:21:59] Speaker C: There's a lot to get through from this episode. So Jake and I thought that this would be the perfect time to bring back a familiar voice on the Age of Aging podcast. Our friend and colleague, Allison Lin, director of social work at the Penn Memory center, to help answer some of these questions. Thanks for joining us, Allison.
[00:22:14] Speaker J: Thank you for having me again.
[00:22:17] Speaker C: So we heard early in this episode that early onset dementia is less common than late onset dementia, which is what we typically see in the Penn Memory center clinic. But you had said before this is something that you as a social worker have seen in your profession.
[00:22:33] Speaker J: Absolutely. We see a lot of folks who get diagnosed with early onset Alzheimer's disease specifically because we're a specialty center. So people who are having a hard time getting a diagnosis elsewhere will come to us to seek a second opinion. And those folks tend to be people under 65 who might have been told by their primary care doctor that it can't be Alzheimer's disease because they're too young. Or maybe they went to a psychiatrist or a marriage counselor or someone else seeking to solve the issues they're figuring out before they actually make their way to us. So we do see it with relative frequency.
[00:23:13] Speaker C: And the two young women that were featured in this episode, Paige and Sierra, how do their stories align with the caregivers that you've worked with?
[00:23:21] Speaker J: I think that as children of someone with early onset Alzheimer's disease, they highlight the unique struggle that these children or that these caregivers experience that are different than the struggles that a fully grown adult child caregiver might experience.
So, for example, Paige was talking about her dilemma of do I go to Brown? Do I forge my own life, or do I stay home and serve as a full time caregiver for my mom? And I think that's like a perfect representation of attention that many young adults experience.
It is a important developmental task for them to go out into the world and forge their own identity and forge their own life. And it's difficult for them to feel that pull back home. It goes against most teenagers and young adults natural instincts. And so there's going to be a lot of angst and pain and tension and conflict for, for those folks.
[00:24:21] Speaker B: That was something that really struck me about talking to both Paige and Sierra, because I'm closer to their time of life than I usually am to the.
[00:24:31] Speaker F: People I'm talking to.
[00:24:32] Speaker B: And I can imagine more clearly how difficult that would be to have a parent that is reliant on me at this age when I am like, still trying to figure out who I am and what I want and how I'm going to like, live the rest of my life.
[00:24:48] Speaker J: I too think of myself when I was 18, 19, 20. I mean, I know legally you are an adult at 18, but socially, at least I'll speak to just myself. I was still calling my mom to ask things like, what's wrong with my checking account? What's wrong with my health insurance? What is a copay Calling her frequently to ask for these things that we need to learn to function independently in the world. And I don't know what I would have done had I not been able to call her my dad. I think also there is a role reversal that is more pronounced with early onset caregiving. So when I work with an adult child in their 40s, 50s, 60s already, they might be saying to me, part of what's been really difficult about this experience is that I am now telling my parent what to do instead of the other way around. And there's a lot of conflict and reorganization in the family structure that needs to happen.
So imagine that amplified if the person who is providing the care or telling their parent what to do is 18, 19, 20.
It's going to be even more uncomfortable, even more foreign, and often even more hard for the parent to accept that this young child who's not even quote, unquote, done growing up, is now having to take the reins and make really big, important, life altering decisions for them.
[00:26:09] Speaker C: We heard from multiple children of persons living with cognitive impairment in this episode, but not their parents themselves. But I imagine you have both in sort of one on one therapy sessions, in support groups, and so on.
What kind of things do you hear from those parents?
[00:26:28] Speaker J: So for people who I've spoken to who have been diagnosed with early onset Alzheimer's disease, they feel often helpless to do the kinds of things that they wanted to do with their child. If they have insight into their disease, they feel like I, I should be the one who is providing this experience, or I should be the one who's providing this wisdom, but I'm not able to anymore. And it can really mess with their sense of identity and their sense of purpose and usefulness in the family. And then for their spouses or caregivers. I think the tension that I hear most often is very much, how do I try and protect my child's childhood? How do I keep things as normal as possible for them and preserve some semblance of a normal childhood or a normal adolescence when there's gonna have to be some compromises made?
Maybe I'm still working and sometimes my child is gonna stay at home with my partner who has Alzheimer's disease.
I think this experience of a teenager, young adult, or child with a parent with Alzheimer's disease can be traumatic. Not that someone who is older can't experience caring for someone with dementia as traumatic, but there's a real tragic element to it that comes into play when someone's diagnosed so young and so much of their life is cut short.
The flip side of trauma, though, is post traumatic growth. And one of the things that I was so impressed by, especially with Paige, is how she has used that traumatic experience that she's not even done with yet. She's still in the thick of it, and turned it into something that brings great meaning for her. By advocating for other families who are going through this.
[00:28:17] Speaker C: Representatives from Lorenzo House talked about this concept of ambiguous loss and sort of preparing to grieve or preparing to lose your loved one. How. How does that relate to what you've seen in your. Your work?
[00:28:30] Speaker J: So ambiguous loss is a concept that was coined by a psychologist named Pauline Boss, who is still around as is incredible. And she started her career studying families who had a loved one who was either missing in action or prisoner of war, and studying the phenomenon of someone being present psychologically or spiritually, but absent physically. They had to grieve this person who maybe was still alive, but they didn't know what happened to them.
And then she started getting really interested in the opposite. So what is it like for a family to experience the loss of someone who is here physically but absent or changed psychologically, spiritually, in their personality?
And that is what most of our caregivers who are caring for someone with dementia experience.
There's also something called anticipatory grief or anticipatory loss, which lots of different people can experience. Whether you're caring for someone with dementia or not, it happens a lot with chronic illness or chronic terminal illness, where you know that an end is coming and you're kind of bracing yourself for that end and doing a lot of pre grieving before the grieving actually happens.
And often that anticipatory loss can feel even more intense sometimes than the loss itself because you're putting a lot of pressure on yourself to live life to the fullest and have these experiences that you want to have with your parent.
But in the context of dementia caregiving, it's really hard to fulfill those expectations because the person with dementia. You know, I'm thinking of Paige's case where her mom had some, some she called it denial, a nose, agnosia, lack of insight, whatever we want to call it, her mom wasn't able to participate in that meaning making with her because she doesn't think there's anything wrong with her.
So it can really complicate the anticipatory grief. That ambiguous loss, I thought that also.
[00:30:25] Speaker B: Ambiguous loss and Paige's story and Sierra's story just to me show how complex and distinct somebody's experience is going to be. Like what Paige is going through is similar, but so different than what Sierra went through with her father. And that every case is going to be unique and the feelings that come about from it are going to be unique as well.
[00:30:49] Speaker C: So what, what are the options then? When, when you have these teenagers and 20 somethings that are trying to sort of come up with their own identity, trying to get started their collegiate experience or early stages of their career, while also balancing being a caregiver and the trauma that can come from the experience of living through the diagnosis, living through the loss of their loved one. There were some references to some of the support groups. What other recommendations do you make to these children.
[00:31:26] Speaker J: I think a support group is a fantastic idea. This can be really isolating for young adults because it is still relatively rare.
So they might not know or be able to find anyone in their immediate social circle who's also going through this, and that's going to lead to that sense of distress. So joining a support group with other teenagers, kids, young adults who are coping with a parent who has Alzheimer's disease or dementia is crucial for finding a sense of community and finding a sense of validation and not feeling completely lost in a drift. I also think therapy is really, really important, and family therapy in particular can be really helpful in this case. Because if we think of the family as a system or a unit, or you can even think of it as a cell, when one part of that cell or one part of that family unit changes, the rest of the family unit has to shift and change around.
And that does not come naturally to most people. Often people need a professional to help them work through. What are the new rules and norms of our family?
What are the new ways that we communicate with each other? How are we making sure that people's needs are met if they're not being met by the person they used to be met by?
So individual therapy, family therapy, and support groups are all crucial and also going on to continue to live your own life.
I also want to say that while I shouted out the remarkable advocacy of Paige, for example, I don't want teenagers, young adults, people who are working on forging their identity to put too much pressure on themselves to do that work right away. It's a long life. You can always come back to advocacy. You can always come back to connection. And if you are just surviving rather than thriving, that's perfectly acceptable.
[00:33:22] Speaker C: Thanks so much to Allison for joining us and providing her perspective as a social worker at the Penn Memory Center. Again, Alison is the director of social work for the Penn Memory Center.
[00:33:32] Speaker B: So it's time for the Beautiful Question. Last week, the beautiful question is, what is something that makes you laugh? And the answers to that question that will play today are from the thank you lunch that the Penn Memory center held last month in Philadelphia. So let's listen to those.
[00:33:51] Speaker E: My name is Ken Bope. Something that makes me laugh is my friends just their way. They are things they say, whether it's a joke or just an observation, that's humorous.
[00:34:00] Speaker C: My name is Vernon Lucas. What makes me laugh is people that are witty, that can come up with quick quips to suddenly do that because I can't do it. So I admire that, and it makes me laugh.
[00:34:14] Speaker A: My name is Kyne Essence. Okay. I lately have been busting my britches or looking at the reruns from Frasier. The sitcom is so intelligently written. The jokes, the timing, and the cast is well put together, and I just. I really, really enjoy it.
[00:34:33] Speaker B: And this week, the beautiful question is, what is something in your home that you treasure?
[00:34:39] Speaker C: I had to think about this a little bit because I have, much to my wife's chagrin, I. I keep some tchotchkes around the house, and there's a couple little pieces of memorabilia and so that. That stand out to me, even though they are sort of utterly worthless and in a capitalist environment. And one of them is a cork that I have. And when I was in college at Penn State, I was the editor of the newspaper, and it was the most intimidating job interview I've ever had in my life. The student newspaper at Penn State is an independent organization. It's a business. It has a board of directors, so on. And when you want to be the editor in chief, you interview with the entire board of directors in a public meeting. So full board in front of me, all of my peers behind me. It's a terrifying experience to have. But ultimately, I was selected to be the editor in chief for my senior year.
And there's a tradition where the outgoing editor in chief buys a bottle of champagne for the incoming editor in chief. You pop it, share it with all of your colleagues, and then you sign your bottle and you add it to the shelf in the editor in chief's office. And I.
I loved this display of these. There were probably two dozen different bottles of champagne on the shelf from over the years. Probably very few of them had been washed, but I kept the cork in my pocket that night. And that was now almost 20 years ago. And I still keep this cork in my drawer. It's a nice reminder, I think, one, that. That I can do hard things like have a public job interview with 12 people. Two, that. That was really my. My first opportunity as a manager and a communications professional.
And three, I think it values both tradition and social support networks. Two things which are very important to me. So, yeah, I have a worthless, you know, ancient little cork in my. My sock drawer upstairs. But that's one of the most valuable things that I have.
[00:36:47] Speaker B: Yeah, I love. I'm so sentimental. Like, I love keeping little things like that. I think it's so special.
[00:36:54] Speaker F: Well, following the theme of this episode, which is young loss, I lost my mom when I was about 18 years old. To breast cancer. So the thing I treasure most in my home is actually her diaries. I keep them in a closet in my room. I've read them only a few times. It's an intense experience, as you would imagine, and I'm not sure how she would feel about me reading her diaries, but I think for me it's just a reminder that even when somebody passes away, you'll still have a relationship with them that changes and grows as you change as a person, and that people can continue to reveal themselves to you even after they're gone, as you go.
[00:37:36] Speaker B: Through periods of your life and you learn about yourself.
[00:37:40] Speaker F: So those are definitely one of the most treasured things in my home, if not the most.
And if you'd like to answer that question, please call 571-449-6474. And the question is, what is something in your home that you treasure?
[00:37:59] Speaker C: Thanks, Nick.
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 center, the Institute on Aging, and the Penn FTD Center.
[00:38:17] Speaker B: Contributors include myself and Terence Casey, as well as Nicolette Calcavecchia, Dalia El Said, Jason Karlewish, Emily Largent, and Megan Sharp.
[00:38:27] Speaker C: More information on the stories you heard today can be found in our show Notes and on our website, penn memorycenter.org.
