May 6, 2025
Caregiver Advocacy with Medical Sociologist Amanda Gengler, Ph.D
Send us a text In this episode of the Ask Dr. Mia podcast, Dr. Mia interviews Amanda Gengler, a sociology professor and author, about her personal experiences as a caregiver for her mother with Alzheimer's and her young son. They discuss the complexities of navigating the healthcare system, the emotional labor involved in caregiving, and the challenges of family dynamics. Amanda shares insights on advocacy, the impact of her mother's recent fall, and the strategies she employs to manage stres...
In this episode of the Ask Dr. Mia podcast, Dr. Mia interviews Amanda Gengler, a sociology professor and author, about her personal experiences as a caregiver for her mother with Alzheimer's and her young son. They discuss the complexities of navigating the healthcare system, the emotional labor involved in caregiving, and the challenges of family dynamics. Amanda shares insights on advocacy, the impact of her mother's recent fall, and the strategies she employs to manage stress and communication within her family. In this conversation, Amanda Gengler shares her experiences navigating the complexities of caring for a parent with dementia while also raising her child. The discussion delves into the emotional challenges of family dynamics, the importance of communication with children about illness, and the unique burdens faced by the sandwich generation. Amanda reflects on the surprises and difficulties encountered in her caregiving journey, emphasizing the need for open conversations about death and dying.
About Amanda Gengler, Ph.D
An associate professor of sociology at Wake Forest University who completed her PhD in Sociology at Brandeis University and a Masters degree in Social Work at the University of Wisconsin-Madison. She is the author of the book, "Save My Kid" How Families of Critically-Ill Children Cope, Hope, and Negotiate an Unequal Healthcare System, and her current research examines the emotional dynamics of routine pediatric care. She regularly teaches undergraduate courses on the Sociology of Health and Illness, the Sociology of Birth and Death, and the Sociology of Care Work.
Video on
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Transcripts on www.miayangmd.com. Transcripts are automatically generated and may contain minor inaccuracies.
Email: ask@miayangmd.com
Opinions expressed are exclusive of Dr. Mia Yang and not reflective of her or guest speaker's employers or funders.
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Welcome back to Ask Dr.
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Mia podcast.
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Today I have a special guest with me, my friend, Amanda Gengler.
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Dr.
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Gengler is an associate professor in sociology at Wake Forest University.
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She is also the author of the book, Save My Kid, about how families of critically ill children can cope, hope, and negotiate an unequal healthcare system.
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I asked Amanda to come on to today's podcast.
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to also talk about her personal caregiving journey, both in terms of her partnership with her family in regards to her mom's Alzheimer's journey, as well as she has a young child as well.
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So let me turn it over to Amanda to see if you wanted to add more to the folks that you're caring for right now.
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Yeah.
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So, um, so yes, I am a solo parent and I have a second grader who turns eight next weekend.
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So we are in, um, birthday mode over here right now with that going on.
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and I am currently, yes, my mom was diagnosed with Alzheimer's, well with amnestic mild cognitive impairment that led to a PET scan that says, Alzheimer's, um, about a year ago.
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Um, so, and things have been sort of, you know, challenging, but not really acute with that situation until about six weeks ago when she fell and broke her leg.
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Um, and so that has really shifted that situation, um, pretty dramatically, which I can talk about.
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Um, and then prior to that, um, before my son was born, my father was diagnosed with a glioblastoma brain tumor.
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Um, so at that time, that was another time in which he was my parents.
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grew up in Minnesota.
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So that's where my parents were.
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I was living in North Carolina during both of these situations.
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And so sort of trying to like help navigate the medical system and help guide medical decision-making and all of that, mostly from afar.
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Um, since I didn't have a kid yet when my Dad was ill, I had a lot more flexibility to go back and be physically present.
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And now with my mom, that's a lot more challenging.
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I have a kid in school and so my brother's doing a lot of the on the ground work, but trying to do as much sort of logistical support as I can from behind the scenes.
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Yeah, that's definitely complicated.
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I certainly know from personal experience and also talking with other sandwich generation caregivers that the two parents are different in terms of their needs and your relationship with them.
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So tell us a little bit about this recent fall and what kind of things have changed.
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Yeah, she, Valentine's Day night, she had actually gone over to babysit for my brother that night and came home and just went into the basement to get something.
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I don't think I was paying a lot of attention to the fact that she also had an osteoporosis diagnosis, but of course, as a medical sociologist who teaches about aging, I'm very well aware that a fall is often sort of the beginning of a big new phase in aging and end of life care.
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So when I got the call from my brother that she had fallen, she had broken her tibia, she was going into surgery pretty immediately, I sort of braced myself for what would be ahead.
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And we started, you know, the first few days, you know, you're just sort of dealing with the immediate like surgery, she's in the hospital.
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trying to figure that out.
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And then pretty quickly we were in the situation of like, what's gonna come next?
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And so I think that, initially my brother thought he might just need to stay with her for a few nights.
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And I was pushing a little bit more for like, can they get her into a transitional care unit?
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And...
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So there was a lot of sort of complications at that time.
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But ultimately she was sort of deemed not eligible to go to a transitional care unit.
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And so, you know, my brother has already been missing a lot of work, just being at the hospital and dealing with things.
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So I started trying to coordinate like other relatives, like, so at least for the first five days, who could stay at home with her and trying to pull that schedule together.
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And then it was just sort of like, what will this look like when she goes home?
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What will she be able to do?
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What won't she be able to do?
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So that period of uncertainty, I can say, was rather difficult for me as a planner to want to kind of figure out what's the long-term plan here.
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And I would say there was sort of a lot of back and forth during that period about what's going to be workable and...
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you know, she probably does.
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Even the hospital, you know, I finally reached a social worker at the hospital, like, why can't she get into transitional care?
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And like, what are we supposed to do?
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She also has dementia.
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I don't know how safe it is for her to be home alone with a broken leg.
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If we can trust that she won't try to do things that she, you know, wouldn't be safe for the leg and so on.
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And, you know, they encouraged us to start looking into assisted living.
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I don't think that's quite where my brother was at with things at that point, but he started to shift in that direction.
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So I then started trying to coordinate with a local organization that's kind of, I think it's similar to a place for mom, but it's sort of a twin city, a specific version of that.
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So I spoke with them about options.
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We were trying to find somewhere that would be really close to my brother's house to make it easier for him to check on her a lot.
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So we found a pretty good option.
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And then there was a lot of, it was tough to sort of deal with a lot of, not everyone was on the same page with whether this was the right path.
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She should go there, what the cost, know, concerns about what the cost would be.
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Whereas my perspective was that we don't really have a choice.
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need to get her there.
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This is how much these things cost.
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Yes, there's a lot of sticker shock, but this is what it costs.
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so long story short, we did ultimately get her in to, know, she agreed to go to the assisted living facility.
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My brother really framed it as, um, you know, like we're just doing this for while your leg heals, you know, we need you in a place where you can.
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Have there, you know, the apartment in assisted living is much more accessible.
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There had been a day the week before that we had started to leave her alone for longer periods of time, but she had gotten.
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her wheelchair jammed in the bathroom.
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So she was kind of stuck in the bathroom until my brother could get there and help her get out.
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really trying to say, yeah, sort of in the background of all of this is that she's not really willing to admit that she has dementia and that that's another reason that she probably shouldn't be in her home in addition to the broken leg.
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So.
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Both the social worker I spoke with and, you know, of course the marketing director of the assisted living facility really encouraged us to think that, you know, just once she gets there, you know, she's going to love it.
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We've got all this great stuff.
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Our residents are so welcoming.
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It's going to be great.
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And that is not how things have played out so far.
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She is pretty insistent that she's going to go home as soon as her leg is healed and she's It really has a hard time understanding how long that's going to take.
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We have to continually reinforce.
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It's three months of non-weight bearing.
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It's three full months.
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And she'll think, you know, look, the incision is healing.
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It's going to be better soon.
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So, and then one other wrinkle right before, and one of the reasons I think my brother...
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sort of was willing to say, yes, we need to go to assisted living is that he and his family, and he has two young kids, had a vacation planned that they really wanted to be able to go on.
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And so there's really no way I could have managed the situation from afar while they were gone without her being somewhere that she at least has a pendant with a button to push if she falls down or she gets stuck or otherwise has a need.
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but she did get an infection right before her incision got infected.
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A few days before he left, she had to have a second surgery to have it cleaned out.
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He was able to take her that just before he left, but now I've been sort of trying to make sure she takes all her medications during this week that he's gone, which has led to some resistance, to put it mildly.
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Yes, and I'm already impressed that you have been able to do so much coordination from out of state.
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And I don't know how much of your sociology medical sociology background helped or, you know, what kind of things would you say were things that you think perhaps others who are not sociologists or medical professionals need to know in terms of this type of care coordination.
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Yeah, so.
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Mia, you're really breaking up right now.
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no, I'm sorry.
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I've tried my, I have a Wi-Fi hotspot and I have my internet, but are you able to hear me now?
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Now you're better.
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Yep.
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Now you're better.
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But can you repeat the last question?
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It was getting pretty bad.
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Yeah, no problem.
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just gonna, I was saying that with your sociology background and the fact that you've done a lot of research into how to navigate this terrible healthcare system, what do you think are things that you're doing that perhaps others who don't have sort of the sociology or the medical professional background need to need to know.
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Yeah, so I am not myself a medical professional, but because I have done so much research in the medical arena, you know, my book is about families who are coordinating care for critically ill children.
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And so and I was interviewing families, but I was also just spending time with them.
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both sort of at the Ronald McDonald House where many of them were staying and hearing them talk about plans of care, but also going to the hospital with them, spending time on the stem cell transplant unit.
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So I sort of became immersed in the world of medical terminology.
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And so I'm able to sort of communicate with my moms and earlier with my dad's healthcare providers.
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sort of at a different level than maybe some of my other family members are.
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And I think that certainly comes in handy at times that I'm able to do that.
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But I think more useful even really is just sort of like understanding how advocacy within the healthcare system works and the importance of communicating and speaking up and sort of what you can cobble together when you're able to do that.
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So.
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In my book, I actually talked about that in terms of the families that I studied as that some of them became really involved in what I call care captaining for their children and really connecting that to that being sort of an emotion management strategy that like when there's a lot of fear and uncertainty, you have anxiety as a result of that and you can sort of channel that anxiety into like, well, what can I do and doing more research and working to sort of direct even like pretty micro level aspects of care.
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Like what should we be going up on the dose of steroids?
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Should we be going down on the dose of steroids and really like expressing strong opinions about that?
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And so certainly in the situation with my dad, I was really following that path pretty extensively, you know, finding out like, okay, well, here's what the options are.
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glioblastoma is unfortunately a pretty cut and dry fatal tumor.
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There's not a lot that can be done.
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It's about 14, 15 month life expectancy.
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But I did, you know, like, well, what clinical trials are happening about this?
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Who is understood to be the experts?
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And I was able to sort of shake the trees a little bit.
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you know, we, he did travel from Minnesota to two other medical centers to sort of explore other options and you know, that did lead to some, if nothing else, it sort of gave us the reassurance that we were doing everything that we possibly could.
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And that was something I heard a lot from families too, that they felt better when they knew, when they could feel confident that they were doing everything possible on behalf of their loved one.
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So in the situation with my mom, it's a little bit more of a standard, she has Alzheimer's, she has a broken leg, there's not a...
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lot of extra care captaining that I need to do sort of on the medical side, but certainly being able to communicate the importance of taking the antibiotic.
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you know, so just sort of like a, if, if I sort of think about this past week when I've been sort of the only one in, in charge, so to speak, of my mom's care, you know, just figuring out like, okay, why is she only getting showers once a week?
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She should probably be getting bathing assistance more than once a week.
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So figuring out like, okay, I need to figure out who the nurse coordinator is so that she can then contact the physician to get an order put in for her to have twice a week bathing assistance, you know, through the home health agency that has been coming to the home.
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When she was in the hospital, knowing like I would, you know, I was really having a hard time.
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sort of getting information without being there and my mom not really being a reliable person who could convey that information.
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So I would call and then anytime someone would come in the room, I'd say, put me on the phone with that person.
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And then I can sort of start figuring out like, oh, okay, yes, we wanna put in an order for home house.
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Yes, that is what we need, right?
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So in terms of what...
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someone else, you know, kind of without that medical background can do, I think it's asking a lot of questions and feeling comfortable speaking up.
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And I think from my perspective also of teaching a course on care work, what we know about care work is that it is very emotionally intensive.
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It involves a lot of emotional labor.
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It's invisibilized, so people don't pay much attention to all those little details, like the number of phone calls involved in getting a second shower added to the schedule, right?
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It's undervalued because it's it's deemed women's work and women's work has historically been undervalued.
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So it's undervalued both from like sort of a symbolic standpoint and certainly from an economic standpoint of what we.
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what we pay and recognize of people who are doing the work.
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And it comes with this really heavy mental load.
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So there's a lot of balls to keep in the air.
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I would say within many families, the research tells us care work tends to fall on women or daughters when we're talking about aging parents.
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And that's a little bit different in the situation.
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Yeah, yeah, yep.
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Or daughter-in-laws, absolutely.
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Um, and so that's a little bit different in my personal situation, since my brother is the one in Minnesota and he has had to do certainly much more of the care work than I have.
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But, you know, I have really felt a pretty strong obligation to try to minimize the load on him by taking on much more of that mental load and really trying to make sure that I'm doing the behind the scenes stuff and I'm doing the communication.
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you know, I'm going into my chart and I'm messaging the neurologist.
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So she's receiving Lecanomab infusions for the Alzheimer's.
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You know, her next appointment, you know, would have been a few days after she came home from the hospital.
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Should she be continuing to receive the infusions right now, or should we just focus on letting the leg heal?
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So all those sorts of little pieces of communication are sort of the kinds of things that I've tried to take off his plate.
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I would say as a result, we're both carrying pretty heavy mental loads right now.
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And then that just becomes a lot to juggle when you're also trying to juggle, you know, getting your kid to soccer and parent conferences.
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And we both work full time, both my brother and I, right?
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So it's, you know, I think we're both hitting a breaking point pretty, pretty quickly here.
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So how have you been able to, what are some strategies that you have used to manage your own stress and your own mental load in terms of the, you know, this is very emotionally charged type of interactions, especially with your mom who's actively resisting your help and your care.
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Yes, that has been particularly challenging this week.
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I have a different relationship with my mom than my brother does.
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I was closer with my dad than with my mom.
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And she's suspicious of anything that I have to say.
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I don't know if suspicious is quite the right word, but...
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She doesn't trust you as much.
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for instance, to go back a little bit further.
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Oh, sorry.
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I jumped in.
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I was going to say just that she doesn't seem to trust you as much as trusting your brother.
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Yeah, I'm sorry.
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It's getting garbled again.
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So I think I understand the question if you want me to just try to respond to it.
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Yeah, I just was just validating that it sounds like she doesn't trust you as much as she trusts your brother.
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Yeah.
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So, so, so when it comes to the medication, she, you know, he has been, he's probably been a little bit less, um, strict about it than, than I would be, but you know, he's checking now every day to, know, he's kind of setting her up with a plate of pills and checking to see if they've been taken at the end of the day.
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And before she got the leg infection, He thinks that like she, first of all, she was on a three day, three times a day antibiotic.
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And at one point she just said, I don't wanna take medications three times a day.
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I'm only gonna take medications twice a day.
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And well, that's not the way a three times a day antibiotic works and your incision is not looking good and the doctor wants you to take this three times a day.
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Um, so he was the one kind of dealing with that.
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Once the infection happened, the second surgery happens.
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became pretty strongly suggesting that we need to make sure she is taking this now four times a day, stronger antibiotic on a very regular schedule, um, suggested that perhaps we should have the assisted living facility, administer it.
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She was very resistant to paying the extra costs that would come with them administering the medication.
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So before my brother left on his trip, I proposed that she take the take her medications four times a day with me on FaceTime.
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And she sort of, you know, was like, oh, sure, fine.
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Like anything to avoid having to have having to pay the money for the facility to administer it.
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So the first time that I called, she seemed surprised and a little.
00:21:54.462 --> 00:21:59.703
not thrilled about it, but my son was on FaceTime with us and so she did it.
00:21:59.704 --> 00:22:05.026
I sort of knew that the bedtime phone, the 10 PM phone call was not going to go well.
00:22:05.266 --> 00:22:08.326
And boy did it not go well.
00:22:09.867 --> 00:22:16.279
The level of animosity expressed towards me in that phone call was pretty stunning.
00:22:16.279 --> 00:22:19.131
And my brother's flight, I think, hadn't even taken off yet.
00:22:19.131 --> 00:22:20.578
He was still at the airport.
00:22:20.578 --> 00:22:25.621
Um, and I was like, Oh, how are we going to do this for another week?
00:22:25.621 --> 00:22:38.237
So, um, so I had to kind of regroup after that because there was no way I could subject myself to that sort of situation four times a day for the whole week.
00:22:38.237 --> 00:22:43.163
So I spoke with an aunt who was going to visit her on Monday to kind of check in.
00:22:43.163 --> 00:22:51.519
And we sort of decided that, you know, this might be a situation where we just have to kind of let the chips fall as they may.
00:22:51.699 --> 00:23:00.224
And maybe that will provide some clarity over like what really, structurally needs to be in place.
00:23:01.346 --> 00:23:18.698
So, but from the standpoint of sort of coping for myself, I would say I've really just had to talk to a lot of friends who sort of understand the dynamic that I'm dealing with and how frustrating the situation can be.
00:23:19.238 --> 00:23:23.721
Luckily, I have a therapist who's very helpful as well.
00:23:23.721 --> 00:23:33.236
So, it's, you know, and then kind of figuring out when I'm gonna hit my limits or where in this case, I sort of did hit my limit, right?
00:23:33.236 --> 00:23:36.978
I'm like, okay, I can keep doing X, Y, and Z.
00:23:36.978 --> 00:23:37.917
I can communicate.
00:23:37.917 --> 00:23:42.615
She wanted her meal plan canceled with the assisted living facility because she hates going down to dinner.
00:23:42.615 --> 00:23:45.116
She says she's fine eating what Justin left in the fridge.
00:23:45.116 --> 00:23:49.861
So this is not ideal long-term, but okay.
00:23:49.861 --> 00:23:51.842
Everyone wants me to cancel the meal plan.
00:23:51.842 --> 00:24:03.211
I can email with the folks at the place and adjust her health service level that's taking her to meals and cancel the meal plan for the next month and so on.
00:24:03.211 --> 00:24:12.707
And so I think I might need to shift my lane once my brother returns as far as possible towards behind the scenes effort.
00:24:12.707 --> 00:24:23.217
and the person who has the less complicated, less contentious relationship to be the one to do the interactive care work.
00:24:23.217 --> 00:24:24.738
yeah.
00:24:24.738 --> 00:24:25.469
That's great.
00:24:25.469 --> 00:24:49.912
And I think I think that takes so much self awareness to know like when to push and when not to push and also accepting that a bad outcome of potentially a worsening infection may be the outcome that has to happen because you cannot physically go there to check on and make sure she takes it four times a day.
00:24:51.080 --> 00:25:03.060
And I know you mentioned earlier that when your son was on FaceTime, she sort of had a slightly better behavior than when she was later in the night when you called her.
00:25:03.601 --> 00:25:09.760
tell us, how is your son's relationship with your mom?
00:25:09.760 --> 00:25:12.500
How does she think of your son?
00:25:13.861 --> 00:25:15.401
Tell us more.
00:25:15.627 --> 00:25:16.413
Mm-mm.
00:25:18.144 --> 00:25:19.255
Yeah.
00:25:19.935 --> 00:25:27.420
So, you know, she is my son's only grandparent because I'm his only parent and my dad died before he was born.
00:25:27.420 --> 00:25:35.355
So, you know, he's he's pretty invested in his relationship with her and he knows that she can be.
00:25:35.684 --> 00:25:41.258
He was on Sunday, he was saying, you know, because he heard me telling some friends about what had happened the night before.
00:25:41.258 --> 00:25:45.410
he said, Grandma, Irene is really being quite jerky.
00:25:45.410 --> 00:25:49.740
And I was like, you know, Yeah, she is kind of being a jerk.
00:25:50.740 --> 00:25:54.701
We can't say that to her the next time we talk to her though.
00:25:56.083 --> 00:26:01.971
And when she first broke her leg and I told him, know, Grandma Erin broke her leg, he did start to cry.
00:26:01.971 --> 00:26:03.652
He was very upset.
00:26:03.652 --> 00:26:10.209
He was, you know, he was really worried, like when we visit this summer, will she be able to play with me?
00:26:10.209 --> 00:26:15.570
And I said, I'm not sure yet completely, but I'm pretty sure yes.
00:26:16.803 --> 00:26:28.242
And now since she has moved to this assisted living facility, unfortunately, I really do fear that that is going to be not a long-term plan.
00:26:28.242 --> 00:26:32.462
She is pretty insistent at this point that she is not going to stay.
00:26:32.942 --> 00:26:36.063
She's very insistent that she's going to drive again.
00:26:36.063 --> 00:26:42.182
I personally don't think she should have been driving from the dementia standpoint before the broken leg.
00:26:42.762 --> 00:26:51.942
I unfortunately was the one in the hospital who broke the news to her that she wasn't going to be driving with a broken leg, which I'm not quite sure why that wasn't apparent.
00:26:51.942 --> 00:26:54.584
It is her right leg that is broken.
00:26:55.846 --> 00:26:57.987
But I got to deliver that news.
00:26:58.586 --> 00:27:01.949
Well, you certainly won't be driving with the broken leg.
00:27:02.910 --> 00:27:08.338
But she is, you know, when my aunt went to visit, she was very, I will be driving again.
00:27:08.338 --> 00:27:10.013
I will be driving.
00:27:10.858 --> 00:27:11.625
So.
00:27:11.625 --> 00:27:18.037
At any rate, back to my son, you know, he also would like to think of her going, he likes Grandma Irene's house.
00:27:18.037 --> 00:27:25.538
So he would like for her to be back at her house when she, when we visit in June.
00:27:27.299 --> 00:27:36.582
So I've had to, you know, there's been a couple of times on FaceTime where he starts to ask and I'm going like making the hand motions like, stop, do not ask this question.
00:27:36.582 --> 00:27:38.755
Do not bring up this topic.
00:27:38.755 --> 00:27:43.315
about going home because we really do not think that's feasible.
00:27:43.315 --> 00:27:47.494
But yeah, she's pretty insistent that that's what's going to happen.
00:27:47.875 --> 00:27:53.355
yeah, so it's been interesting.
00:27:53.755 --> 00:28:08.098
And then just as I sort of consider my own position and things, the extent to which I can set boundaries is limited when I'm also trying to facilitate.
00:28:08.098 --> 00:28:30.719
their relationships, their ongoing relationship and understanding that it is, and maybe being one of the few people in the situation who recognizes it to be very time limited at this point, that there's actually not many months or years left where he'll be able to, where she'll even necessarily recognize him.
00:28:30.739 --> 00:28:36.098
So really wanting to kind of protect that for him a little bit right now.
00:28:36.490 --> 00:28:39.713
It's obviously made me really have to rethink our summer plans.
00:28:39.713 --> 00:28:41.575
We were planning to visit for a week.
00:28:41.575 --> 00:28:46.310
Being in Minnesota is not always the easiest situation for me to be in.
00:28:46.400 --> 00:28:51.344
And now possibly I'll be cleaning out the house and will need to be there for longer.
00:28:51.344 --> 00:29:04.674
Or even if that's not the situation, this just is a window of time for him to spend with her before she continues down this path of dementia where his time with her will be even less.
00:29:04.832 --> 00:29:06.709
you know, rewarding for him.
00:29:06.961 --> 00:29:07.882
So.
00:29:08.142 --> 00:29:08.907
Yeah.
00:29:08.907 --> 00:29:34.424
thing for you to hold in your heart and mind because even though your relationship with your mom is complicated as my relationship with my mom was complicated, I also had a similar awareness that my children's time with my mom was limited and I was right and that we made a lot more trips than I...
00:29:34.739 --> 00:29:38.172
probably would have otherwise made if it was just myself.
00:29:38.413 --> 00:29:39.273
Yeah.
00:29:40.276 --> 00:29:44.559
And what have you told your son about your mom's memory problems?
00:29:48.682 --> 00:30:01.479
Yeah, so one of the maddening things about Aldis for me is that both of her parents had dementia, whether it was both Alzheimer's, I think is an open question.
00:30:01.479 --> 00:30:05.470
She also had a sister who had frontal temporal dementia.
00:30:05.470 --> 00:30:08.132
So there's a lot of dementia in this family.
00:30:08.132 --> 00:30:10.502
Her mom actually died before I was born.
00:30:10.502 --> 00:30:13.294
She had it even earlier than her.
00:30:13.493 --> 00:30:22.762
But my grandfather had had dementia when I was, he was in his eighties, but I was in elementary school.
00:30:22.762 --> 00:30:28.423
So I had known him as sort of like a sweet, loving guy who knew me when I was little.
00:30:28.423 --> 00:30:33.522
But by the time I think he died, I was maybe in middle school when he died.
00:30:33.522 --> 00:30:36.623
And for several years before that, he was in the nursing home.
00:30:36.623 --> 00:30:39.563
He had absolutely no idea who we were.
00:30:39.563 --> 00:30:45.987
He thought that horses were outside the nursing home waiting to come get him for.
00:30:45.987 --> 00:30:47.907
and go meet his parents or something, right?
00:30:47.907 --> 00:30:51.568
Like he had absolutely no orientation to the present.
00:30:51.608 --> 00:31:04.263
So I have used that experience to sort of try to explain to my son that this is the path that we're on and that this is sort of what we're preparing for.
00:31:04.263 --> 00:31:08.775
That there might come a time when Grandma Irene won't know who we are.
00:31:09.090 --> 00:31:20.351
Um, we're not there yet, but right now she, you know, the place that we were at even a year ago, actually I'd say a year and a half ago, she would ask us the same question over and over again.
00:31:20.611 --> 00:31:30.530
You know, she was here around, um, think it might've been Thanksgiving break and, know, so Matthew, when do you go back to school or no, it was new years.
00:31:30.530 --> 00:31:31.490
It was the January.
00:31:31.490 --> 00:31:32.590
So when do you go back to school?
00:31:32.590 --> 00:31:33.711
Do you go back to school on Monday?
00:31:33.711 --> 00:31:35.730
Like, nope, I don't go back to Wednesday.
00:31:35.730 --> 00:31:38.595
And then five minutes later, the same.
00:31:38.595 --> 00:31:40.994
question and he did start to get impatient.
00:31:40.994 --> 00:31:46.595
Like I just told you that I'm not going back to school until Wednesday.
00:31:46.755 --> 00:31:50.815
So I would, you know, I would try to encourage him like, nope, that's, that's not helpful.
00:31:50.815 --> 00:31:54.154
You know, we just are, we're just going to keep answering the question.
00:31:54.154 --> 00:32:01.414
We're just going to keep calmly answering the question and you know, to just kind of try to help him understand that trajectory.
00:32:01.414 --> 00:32:02.855
Like here's where we're at now.
00:32:02.855 --> 00:32:07.414
Right now she's asking us the same question many times in a row.
00:32:08.269 --> 00:32:13.020
we're gonna get to a point where she might not know who we are.
00:32:13.260 --> 00:32:16.602
And that doesn't mean that she doesn't love you anymore.
00:32:16.602 --> 00:32:21.003
That just means that this disease is taking over her brain.
00:32:21.663 --> 00:32:31.147
And she, think he's has a little bit extra foundation for understanding that because of what I've told him about my dad and the brain tumor.
00:32:31.588 --> 00:32:40.789
that was one of his, hers very early exposures to understanding what death is was, understanding like where, why is Grandpa Dale not here?
00:32:40.789 --> 00:32:41.390
What happened to him?
00:32:41.390 --> 00:32:42.009
Well, he died.
00:32:42.009 --> 00:32:43.172
Well, what does it mean to die?
00:32:43.172 --> 00:32:44.472
Your body stops working.
00:32:44.472 --> 00:32:45.894
Why did his body stop working?
00:32:45.894 --> 00:32:49.237
There was a disease in his brain that made his body stop working.
00:32:49.357 --> 00:32:55.815
So really kind of trying to use that same framework to help him understand the situation with my mom.
00:32:55.815 --> 00:33:12.763
Yeah, that sounds like it must be hard to also talk about sort of over and over and kind of break it down into very, very concrete terms in terms of, you know, that she may not recognize you.
00:33:13.035 --> 00:33:14.596
How did he respond to that?
00:33:14.596 --> 00:33:22.210
Or does he seem like he was okay because you made it sort of an expected future?
00:33:25.227 --> 00:33:34.250
Yeah, I think, you know, we've always from a pretty young age talked really, you know, I teach a class on death and dying.
00:33:34.291 --> 00:33:36.643
I write about this stuff in my research.
00:33:36.643 --> 00:33:57.579
So I'm pretty committed as a person to trying to make space for these kinds of conversations and to try to destigmatize sort of the taboo around talking about you know, death or other hard things or grief and so on in, you know, our otherwise death phobic society.
00:33:57.579 --> 00:34:02.874
So we've always had these sorts of conversations.
00:34:02.874 --> 00:34:09.458
And so I think he's used to them being pretty just matter of fact, there's no questions that he can't ask.
00:34:09.458 --> 00:34:12.130
There's no feeling he's not allowed to have.
00:34:12.150 --> 00:34:18.235
And so, so luckily this was not, yeah, this was not the first time that we were.
00:34:18.572 --> 00:34:34.492
having a, we'd had so many other conversations like this about my dad, about, you know, what could happen, you know, any fear that he has about what could happen to me and why it's very, very unlikely that that will happen to me at any time in the near future.
00:34:35.094 --> 00:34:42.268
But then being able to introduce like, okay, well now we are on this path with Grandma Irene, but it's not happening right now.
00:34:42.268 --> 00:34:43.804
It will happen in the future.
00:34:43.804 --> 00:34:44.407
Gotcha.
00:34:44.407 --> 00:34:48.068
So yeah, so I'd say he was able to roll with it pretty well.
00:34:48.068 --> 00:34:55.626
kids in general, like when she broke her leg and I delivered that news, he became extremely upset for a little while.
00:34:55.626 --> 00:35:11.514
And we just kind of sat in that space and I let him cry and validated how upsetting it is that this happened and that he might not be able to have exactly the same kind of engagement with Grandma Irene this summer that he's had in previous summers.
00:35:11.954 --> 00:35:12.795
And...
00:35:13.835 --> 00:35:17.422
I mean, within probably 20 minutes later, he's off playing again.
00:35:17.422 --> 00:35:25.478
So, which of course is what we know about how kids process hard things is that they don't stay in it for super long.
00:35:25.478 --> 00:35:25.934
Yeah.
00:35:25.934 --> 00:35:26.914
that's good.
00:35:26.914 --> 00:35:41.248
think as adults, we forget that kids have, you know, just a short attention span and that they're not constantly necessarily thinking about grandma dying, which we might be thinking about.
00:35:41.248 --> 00:35:47.894
But thankfully, they're able to, you know, refocus on to something that's more fun and play.
00:35:48.476 --> 00:36:06.744
So I think that Perhaps the last question that I have for you is that, what did you find surprising about this recent journey or recent changes in terms of her care or your relationship and being her care partner?
00:36:11.648 --> 00:36:13.940
Yeah, oh, that's a big one.
00:36:13.940 --> 00:36:23.097
think there's, you know, it's sort of both and like, you know, that everything that's surprising is really not surprising or shouldn't be surprising.
00:36:23.097 --> 00:36:26.681
But I would say, you know, then I sort of beat myself up for letting it be surprising.
00:36:26.681 --> 00:36:37.998
I would say one thing that comes to mind is just in general as somebody who it's been really challenging as somebody who studies.
00:36:38.391 --> 00:36:47.954
death and dying and aging and just medicine from a social standpoint in general and help other people.
00:36:47.954 --> 00:36:53.516
You know, in my death and dying class, my students have to engage in end of life planning.
00:36:53.516 --> 00:37:00.300
like, you know, they don't actually have to go get paperwork notarized or anything, but I strongly encourage them to do that.
00:37:01.119 --> 00:37:12.958
So when my mom was first diagnosed with Alzheimer's about a year ago, I started pushing really hard on is the power of attorney updated?
00:37:14.219 --> 00:37:15.418
What's with the will?
00:37:15.418 --> 00:37:18.159
I think actually we need everything to be in a trust.
00:37:18.159 --> 00:37:26.039
And actually, when you have a diagnosis of dementia, you might require many years of long-term care.
00:37:26.039 --> 00:37:28.338
Memory care is very expensive.
00:37:28.938 --> 00:37:33.099
What is our, you know, what's the financial situation around that?
00:37:33.179 --> 00:37:51.543
My mom, owns this little farmhouse that she grew up in that, you know, was passed on to her that she's, you know, up until this happened, she still enjoyed going down and spending weekends at my brother enjoys going down and spending weekends in this little farmhouse in the middle of nowhere.
00:37:51.543 --> 00:38:10.532
I don't know that it has any real value economically, but I do know that we could be forced to quote, sell this farmhouse before she would qualify for any long-term care support if we didn't take financial strategies to protect that house.
00:38:11.213 --> 00:38:17.556
So I tried to raise that early on and that was, you know, a year ago and none of that is in place.
00:38:18.838 --> 00:38:28.847
And that's been hard for me because my identity is kind of invested in like, I'm someone who knows how this works and I know what should be happening.
00:38:28.981 --> 00:38:31.692
And I should be making that happen.
00:38:32.432 --> 00:38:46.842
But again, she's not, mean, and I have raised it many times and it has led to contention in which, you know, she ultimately just gets a little ornery and says, I am perfectly competent to make all my own decisions and you know, so on and so forth.
00:38:47.262 --> 00:38:58.451
you know, and then I think my brother just gets, you know, in this tough spot where he's, you know, like he agrees with me that it should happen, but he's not really going to take on, he's not going to himself make it happen.
00:38:58.451 --> 00:38:59.130
So.
00:38:59.574 --> 00:39:00.556
We're at a different moment.
00:39:00.556 --> 00:39:19.331
I think it'll happen now, but it is, you know, it might happen now, but it's going to be a lot harder because it is way harder to get people to talk about the end of life when they have to actively accept that they are dying than when you're talking about as just in case.
00:39:19.570 --> 00:39:29.398
And so that's why I always encourage my students have these conversations with your parents now when there is no immediate reason to think you would need these documents.
00:39:29.409 --> 00:39:35.262
because it becomes a lot more harder and threatening to people when you're having the conversation in the moment of need.
00:39:35.262 --> 00:39:46.594
So I shouldn't be surprised that that's been so hard for me to accomplish in my own family, but it's, you know, emotionally just, you know, you're still surprised.
00:39:46.594 --> 00:39:49.097
You're like, how can this be happening?
00:39:49.277 --> 00:39:52.260
So that's one thing.
00:39:52.260 --> 00:39:55.443
And then I would say just, yeah, just in general.
00:39:56.257 --> 00:40:04.391
You know, shouldn't be surprised that my mom was so upset about the medications, but it's like, wow, that was a really, really big pushback.
00:40:04.391 --> 00:40:08.711
Shouldn't be surprised about the level of denial around the dementia.
00:40:09.373 --> 00:40:11.373
But you know, there'll be a moment of acknowledgement.
00:40:11.373 --> 00:40:15.945
I guess she did say to my brother at one point the week before he left, like, my mind is just gone.
00:40:15.945 --> 00:40:17.927
Since all of this happened, my mind is just gone.
00:40:17.927 --> 00:40:21.878
And so then I get hopeful that like, okay, she recognizes the situation.
00:40:21.878 --> 00:40:23.659
We're gonna make some progress.
00:40:23.690 --> 00:40:30.054
And then we immediately wound up in the medication situation of, nope, I've never forgotten to take a pill ever.
00:40:30.054 --> 00:40:34.335
am completely able to, you how dare you challenge my competency.
00:40:34.335 --> 00:40:41.927
So intellectually, it's not surprising, but the embodied experience of it is still, it's still jarring.
00:40:41.927 --> 00:40:43.315
Yeah.
00:40:43.315 --> 00:41:03.932
think that is such a I resonate with that as well, because during my mom's journey with ovarian cancer, there were there were things that I was like, I was surprised that she would even want to do like she she really wanted to try.
00:41:03.932 --> 00:41:18.407
the anti-parasitic for cancer treatment and no amount of convincing and me saying that this is not real science, please don't, was convincing, was able to persuade her not to.
00:41:18.753 --> 00:41:26.516
And I think that especially for us who probably rely on our logic.
00:41:27.003 --> 00:41:44.021
in our day to day world, that it's very difficult to deal with someone who's illogical, or that they kind of change from day to day and hour to hour, you know, sometimes they're very reasonable and self aware and other times they're not.
00:41:44.021 --> 00:41:55.431
So and that's, that's, that's another additional challenge, I think, with dementia compared to say, some of the other, you know, terminal conditions that does not affect your mind.
00:41:55.431 --> 00:42:00.356
So But I really appreciate you joining us today.
00:42:00.356 --> 00:42:02.298
Yeah, go ahead, Amanda.
00:42:05.777 --> 00:42:11.592
I was just going to say the devaluing of expertise.
00:42:11.592 --> 00:42:22.300
I think that's been another thing that's been really, like I have some expertise in this arena and it's completely devalued within my own family.
00:42:22.300 --> 00:42:25.713
And that's just a hard rock to hit up against.
00:42:25.713 --> 00:42:30.347
So yeah, I can very much resonate with that.
00:42:31.409 --> 00:42:34.143
The very last thing that I wanted to ahead.
00:42:36.798 --> 00:42:38.271
Oh, no, go ahead.
00:42:38.271 --> 00:42:53.164
going to say that I think for some reason our parents always think of us as their child who perhaps did not have this expert knowledge from the time that we spent with them and as in childhood.
00:42:53.164 --> 00:42:58.206
So in their mind, we're probably still 15 and know nothing.
00:42:58.206 --> 00:43:07.329
And so even though we have accumulated all this knowledge since then, they're like, no, no, no, you don't know what you're talking about.
00:43:07.369 --> 00:43:18.856
You Right, yeah, it's like I only earned a PhD in this, you know, like, yeah, fine, I know nothing, let's just go with whatever.
00:43:19.677 --> 00:43:37.875
But yeah, I think the last thing I wanted to say just from the Sandwich Generation standpoint, that's been really hard for me personally is just, you I think losing a parent or going through the end of life phase at any point in life is a really hard transition for anyone, but I think it's...
00:43:37.875 --> 00:43:43.735
extra hard when you're crossing that threshold before most of your peers are.
00:43:43.920 --> 00:43:49.068
And, you know, I was 31 when my dad was diagnosed with glioblastoma and 32 when he died.
00:43:49.068 --> 00:43:50.706
I am 43 now.
00:43:50.706 --> 00:44:07.739
And most or at least very many of my friends and colleagues have healthy parents who are still providing childcare, who are going on vacations with their grandchildren, who are visiting, you know, they are just inhabiting a completely different universe.
00:44:07.840 --> 00:44:11.592
then I have inhabited and that my son will inhabit, right?
00:44:11.592 --> 00:44:19.175
And I know you have had that same experience, Mia, and that that is just really hard.
00:44:19.175 --> 00:44:37.666
And so I think that just makes it even more important to find other people who are in this sort of unfortunate club at a younger age to just really sort of like lament and grieve what you lose when you are going through this.
00:44:37.666 --> 00:44:43.527
at this age, my therapist asked me when I said, I do not want to spend the summer cleaning up my childhood home.
00:44:43.527 --> 00:44:45.467
And she's like, well, when do you want to?
00:44:45.467 --> 00:44:47.786
And I was like, when I'm 57.
00:44:47.786 --> 00:44:50.387
I want to do it when I'm 57.
00:44:51.186 --> 00:44:54.487
That's when I want to do it.
00:44:56.907 --> 00:45:02.507
I will not have any, no childcare responsibilities, right?
00:45:04.451 --> 00:45:05.130
when I want.
00:45:05.130 --> 00:45:08.590
That's when I'll have the time and space and mental energy to do that.
00:45:08.751 --> 00:45:26.391
So, but on the flip side of that, I do think it has put me in a position to that even when colleagues who are 10, 15, 20 years older than me, and they are going through that transition when they're 57, that I'm able to provide support to them that I otherwise wouldn't be able to about just what it is like to lose a parent.
00:45:26.391 --> 00:45:33.490
And certainly for other people who are going through it at this earlier stage to really kind of know how to provide.
00:45:33.568 --> 00:45:39.722
you know, not perfectly or anything, but be a little better positioned to feel like, you know, I can really reach out and provide that support.
00:45:39.722 --> 00:45:49.625
And that has deepened relationships with, you know, colleagues that, you know, I otherwise would just have professional relationships with, but, you know, oh, I feel for you.
00:45:49.625 --> 00:45:50.735
I just went through this.
00:45:50.735 --> 00:45:59.068
Let's, let's have a cup of coffee or get drinks or something and really just talk about what it's like, because we, put, we spend a lot of it.
00:45:59.068 --> 00:46:03.414
We put a lot of attention on other life transitions, marriage, parenthood.
00:46:03.414 --> 00:46:15.539
becoming an empty nester, but we really don't talk about this sort of milestone transition in life, what it's like to face your own mortality at a younger age when you have lost parents at a younger age.
00:46:15.599 --> 00:46:23.143
So I think that's, you know, one sort of, yeah, that's just another component of this experience of being in that sandwich generation.
00:46:23.143 --> 00:47:00.505
Yeah, yeah, no, I think thank you for bringing that up because I don't think I necessarily realized that the difference in terms of decade that you you and I are are dealing with and how young our children are versus perhaps some of the, I guess, more older, older sandwich generation folks who might have their own grandchildren at a time that they're losing their parents, which was definitely the case for say my grandparents had me, I was already born at the time that my great grandmother died.
00:47:00.505 --> 00:47:08.376
And that's just such a different stage of life compared to losing your parent young.
00:47:09.117 --> 00:47:14.028
And I think it's a uniquely vulnerable transition.
00:47:14.028 --> 00:47:18.190
And I'm really glad that we're able to have this conversation today.
00:47:18.190 --> 00:47:20.871
And we're going to wrap it up here.
00:47:20.871 --> 00:47:29.041
But if you Feel like this conversation has helped you or validated your experience as a sandwich generation caregiver.
00:47:29.041 --> 00:47:37.242
Please share this episode with others and leave me a review on your podcast platform and talk to you next time.
00:47:39.389 --> 00:47:40.123
Thank
00:00:01.389 --> 00:00:03.031
Welcome back to Ask Dr.
00:00:03.031 --> 00:00:04.472
Mia podcast.
00:00:04.472 --> 00:00:09.775
Today I have a special guest with me, my friend, Amanda Gengler.
00:00:09.775 --> 00:00:10.236
Dr.
00:00:10.236 --> 00:00:15.878
Gengler is an associate professor in sociology at Wake Forest University.
00:00:16.000 --> 00:00:27.067
She is also the author of the book, Save My Kid, about how families of critically ill children can cope, hope, and negotiate an unequal healthcare system.
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I asked Amanda to come on to today's podcast.
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to also talk about her personal caregiving journey, both in terms of her partnership with her family in regards to her mom's Alzheimer's journey, as well as she has a young child as well.
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So let me turn it over to Amanda to see if you wanted to add more to the folks that you're caring for right now.
00:00:59.134 --> 00:00:59.915
Yeah.
00:00:59.915 --> 00:01:07.102
So, um, so yes, I am a solo parent and I have a second grader who turns eight next weekend.
00:01:07.102 --> 00:01:12.945
So we are in, um, birthday mode over here right now with that going on.
00:01:14.548 --> 00:01:28.239
and I am currently, yes, my mom was diagnosed with Alzheimer's, well with amnestic mild cognitive impairment that led to a PET scan that says, Alzheimer's, um, about a year ago.
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Um, so, and things have been sort of, you know, challenging, but not really acute with that situation until about six weeks ago when she fell and broke her leg.
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Um, and so that has really shifted that situation, um, pretty dramatically, which I can talk about.
00:01:49.471 --> 00:01:57.174
Um, and then prior to that, um, before my son was born, my father was diagnosed with a glioblastoma brain tumor.
00:01:57.355 --> 00:02:03.739
Um, so at that time, that was another time in which he was my parents.
00:02:03.739 --> 00:02:04.650
grew up in Minnesota.
00:02:04.650 --> 00:02:06.301
So that's where my parents were.
00:02:06.382 --> 00:02:09.524
I was living in North Carolina during both of these situations.
00:02:09.524 --> 00:02:19.572
And so sort of trying to like help navigate the medical system and help guide medical decision-making and all of that, mostly from afar.
00:02:19.572 --> 00:02:29.128
Um, since I didn't have a kid yet when my Dad was ill, I had a lot more flexibility to go back and be physically present.
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And now with my mom, that's a lot more challenging.
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I have a kid in school and so my brother's doing a lot of the on the ground work, but trying to do as much sort of logistical support as I can from behind the scenes.
00:02:43.598 --> 00:02:46.437
Yeah, that's definitely complicated.
00:02:46.518 --> 00:03:02.818
I certainly know from personal experience and also talking with other sandwich generation caregivers that the two parents are different in terms of their needs and your relationship with them.
00:03:02.978 --> 00:03:08.397
So tell us a little bit about this recent fall and what kind of things have changed.
00:03:11.393 --> 00:03:24.413
Yeah, she, Valentine's Day night, she had actually gone over to babysit for my brother that night and came home and just went into the basement to get something.
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I don't think I was paying a lot of attention to the fact that she also had an osteoporosis diagnosis, but of course, as a medical sociologist who teaches about aging, I'm very well aware that a fall is often sort of the beginning of a big new phase in aging and end of life care.
00:03:45.146 --> 00:03:58.567
So when I got the call from my brother that she had fallen, she had broken her tibia, she was going into surgery pretty immediately, I sort of braced myself for what would be ahead.
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And we started, you know, the first few days, you know, you're just sort of dealing with the immediate like surgery, she's in the hospital.
00:04:08.288 --> 00:04:09.460
trying to figure that out.
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And then pretty quickly we were in the situation of like, what's gonna come next?
00:04:14.693 --> 00:04:23.250
And so I think that, initially my brother thought he might just need to stay with her for a few nights.
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And I was pushing a little bit more for like, can they get her into a transitional care unit?
00:04:31.396 --> 00:04:32.317
And...
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So there was a lot of sort of complications at that time.
00:04:42.692 --> 00:04:48.817
But ultimately she was sort of deemed not eligible to go to a transitional care unit.
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And so, you know, my brother has already been missing a lot of work, just being at the hospital and dealing with things.
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So I started trying to coordinate like other relatives, like, so at least for the first five days, who could stay at home with her and trying to pull that schedule together.
00:05:05.091 --> 00:05:10.911
And then it was just sort of like, what will this look like when she goes home?
00:05:10.911 --> 00:05:12.170
What will she be able to do?
00:05:12.170 --> 00:05:14.110
What won't she be able to do?
00:05:14.771 --> 00:05:25.350
So that period of uncertainty, I can say, was rather difficult for me as a planner to want to kind of figure out what's the long-term plan here.
00:05:25.951 --> 00:05:33.216
And I would say there was sort of a lot of back and forth during that period about what's going to be workable and...
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you know, she probably does.
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Even the hospital, you know, I finally reached a social worker at the hospital, like, why can't she get into transitional care?
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And like, what are we supposed to do?
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She also has dementia.
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I don't know how safe it is for her to be home alone with a broken leg.
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If we can trust that she won't try to do things that she, you know, wouldn't be safe for the leg and so on.
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And, you know, they encouraged us to start looking into assisted living.
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I don't think that's quite where my brother was at with things at that point, but he started to shift in that direction.
00:06:04.511 --> 00:06:16.110
So I then started trying to coordinate with a local organization that's kind of, I think it's similar to a place for mom, but it's sort of a twin city, a specific version of that.
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So I spoke with them about options.
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We were trying to find somewhere that would be really close to my brother's house to make it easier for him to check on her a lot.
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So we found a pretty good option.
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And then there was a lot of, it was tough to sort of deal with a lot of, not everyone was on the same page with whether this was the right path.
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She should go there, what the cost, know, concerns about what the cost would be.
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Whereas my perspective was that we don't really have a choice.
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need to get her there.
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This is how much these things cost.
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Yes, there's a lot of sticker shock, but this is what it costs.
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so long story short, we did ultimately get her in to, know, she agreed to go to the assisted living facility.
00:07:06.197 --> 00:07:15.925
My brother really framed it as, um, you know, like we're just doing this for while your leg heals, you know, we need you in a place where you can.
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Have there, you know, the apartment in assisted living is much more accessible.
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There had been a day the week before that we had started to leave her alone for longer periods of time, but she had gotten.
00:07:27.084 --> 00:07:28.735
her wheelchair jammed in the bathroom.
00:07:28.735 --> 00:07:33.480
So she was kind of stuck in the bathroom until my brother could get there and help her get out.
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really trying to say, yeah, sort of in the background of all of this is that she's not really willing to admit that she has dementia and that that's another reason that she probably shouldn't be in her home in addition to the broken leg.
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So.
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Both the social worker I spoke with and, you know, of course the marketing director of the assisted living facility really encouraged us to think that, you know, just once she gets there, you know, she's going to love it.
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We've got all this great stuff.
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Our residents are so welcoming.
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It's going to be great.
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And that is not how things have played out so far.
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She is pretty insistent that she's going to go home as soon as her leg is healed and she's It really has a hard time understanding how long that's going to take.
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We have to continually reinforce.
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It's three months of non-weight bearing.
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It's three full months.
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And she'll think, you know, look, the incision is healing.
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It's going to be better soon.
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So, and then one other wrinkle right before, and one of the reasons I think my brother...
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sort of was willing to say, yes, we need to go to assisted living is that he and his family, and he has two young kids, had a vacation planned that they really wanted to be able to go on.
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And so there's really no way I could have managed the situation from afar while they were gone without her being somewhere that she at least has a pendant with a button to push if she falls down or she gets stuck or otherwise has a need.
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but she did get an infection right before her incision got infected.
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A few days before he left, she had to have a second surgery to have it cleaned out.
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He was able to take her that just before he left, but now I've been sort of trying to make sure she takes all her medications during this week that he's gone, which has led to some resistance, to put it mildly.
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Yes, and I'm already impressed that you have been able to do so much coordination from out of state.
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And I don't know how much of your sociology medical sociology background helped or, you know, what kind of things would you say were things that you think perhaps others who are not sociologists or medical professionals need to know in terms of this type of care coordination.
00:10:15.105 --> 00:10:16.647
Yeah, so.
00:10:19.346 --> 00:10:21.610
Mia, you're really breaking up right now.
00:10:21.706 --> 00:10:22.636
no, I'm sorry.
00:10:22.636 --> 00:10:32.934
I've tried my, I have a Wi-Fi hotspot and I have my internet, but are you able to hear me now?
00:10:36.427 --> 00:10:37.158
Now you're better.
00:10:37.158 --> 00:10:38.210
Yep.
00:10:38.792 --> 00:10:39.714
Now you're better.
00:10:39.714 --> 00:10:41.427
But can you repeat the last question?
00:10:41.427 --> 00:10:42.841
It was getting pretty bad.
00:10:42.841 --> 00:10:44.081
Yeah, no problem.
00:10:44.081 --> 00:11:09.818
just gonna, I was saying that with your sociology background and the fact that you've done a lot of research into how to navigate this terrible healthcare system, what do you think are things that you're doing that perhaps others who don't have sort of the sociology or the medical professional background need to need to know.
00:11:13.770 --> 00:11:30.691
Yeah, so I am not myself a medical professional, but because I have done so much research in the medical arena, you know, my book is about families who are coordinating care for critically ill children.
00:11:30.691 --> 00:11:36.370
And so and I was interviewing families, but I was also just spending time with them.
00:11:37.143 --> 00:11:48.254
both sort of at the Ronald McDonald House where many of them were staying and hearing them talk about plans of care, but also going to the hospital with them, spending time on the stem cell transplant unit.
00:11:48.475 --> 00:11:52.418
So I sort of became immersed in the world of medical terminology.
00:11:52.418 --> 00:11:59.886
And so I'm able to sort of communicate with my moms and earlier with my dad's healthcare providers.
00:11:59.948 --> 00:12:03.591
sort of at a different level than maybe some of my other family members are.
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And I think that certainly comes in handy at times that I'm able to do that.
00:12:08.403 --> 00:12:24.130
But I think more useful even really is just sort of like understanding how advocacy within the healthcare system works and the importance of communicating and speaking up and sort of what you can cobble together when you're able to do that.
00:12:24.130 --> 00:12:24.931
So.
00:12:25.096 --> 00:13:03.080
In my book, I actually talked about that in terms of the families that I studied as that some of them became really involved in what I call care captaining for their children and really connecting that to that being sort of an emotion management strategy that like when there's a lot of fear and uncertainty, you have anxiety as a result of that and you can sort of channel that anxiety into like, well, what can I do and doing more research and working to sort of direct even like pretty micro level aspects of care.
00:13:03.080 --> 00:13:06.472
Like what should we be going up on the dose of steroids?
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Should we be going down on the dose of steroids and really like expressing strong opinions about that?
00:13:12.488 --> 00:13:21.734
And so certainly in the situation with my dad, I was really following that path pretty extensively, you know, finding out like, okay, well, here's what the options are.
00:13:22.711 --> 00:13:27.615
glioblastoma is unfortunately a pretty cut and dry fatal tumor.
00:13:27.615 --> 00:13:29.316
There's not a lot that can be done.
00:13:29.316 --> 00:13:33.399
It's about 14, 15 month life expectancy.
00:13:35.260 --> 00:13:39.754
But I did, you know, like, well, what clinical trials are happening about this?
00:13:39.754 --> 00:13:41.826
Who is understood to be the experts?
00:13:41.826 --> 00:13:44.408
And I was able to sort of shake the trees a little bit.
00:13:44.408 --> 00:14:00.104
you know, we, he did travel from Minnesota to two other medical centers to sort of explore other options and you know, that did lead to some, if nothing else, it sort of gave us the reassurance that we were doing everything that we possibly could.
00:14:00.104 --> 00:14:10.789
And that was something I heard a lot from families too, that they felt better when they knew, when they could feel confident that they were doing everything possible on behalf of their loved one.
00:14:10.789 --> 00:14:19.304
So in the situation with my mom, it's a little bit more of a standard, she has Alzheimer's, she has a broken leg, there's not a...
00:14:19.304 --> 00:14:28.001
lot of extra care captaining that I need to do sort of on the medical side, but certainly being able to communicate the importance of taking the antibiotic.
00:14:29.024 --> 00:14:48.427
you know, so just sort of like a, if, if I sort of think about this past week when I've been sort of the only one in, in charge, so to speak, of my mom's care, you know, just figuring out like, okay, why is she only getting showers once a week?
00:14:48.427 --> 00:14:51.999
She should probably be getting bathing assistance more than once a week.
00:14:51.999 --> 00:15:10.211
So figuring out like, okay, I need to figure out who the nurse coordinator is so that she can then contact the physician to get an order put in for her to have twice a week bathing assistance, you know, through the home health agency that has been coming to the home.
00:15:10.350 --> 00:15:15.778
When she was in the hospital, knowing like I would, you know, I was really having a hard time.
00:15:15.778 --> 00:15:23.359
sort of getting information without being there and my mom not really being a reliable person who could convey that information.
00:15:23.359 --> 00:15:28.538
So I would call and then anytime someone would come in the room, I'd say, put me on the phone with that person.
00:15:28.698 --> 00:15:36.259
And then I can sort of start figuring out like, oh, okay, yes, we wanna put in an order for home house.
00:15:36.259 --> 00:15:38.839
Yes, that is what we need, right?
00:15:39.278 --> 00:15:43.619
So in terms of what...
00:15:44.136 --> 00:15:54.009
someone else, you know, kind of without that medical background can do, I think it's asking a lot of questions and feeling comfortable speaking up.
00:15:55.571 --> 00:16:08.764
And I think from my perspective also of teaching a course on care work, what we know about care work is that it is very emotionally intensive.
00:16:08.764 --> 00:16:10.894
It involves a lot of emotional labor.
00:16:11.870 --> 00:16:24.481
It's invisibilized, so people don't pay much attention to all those little details, like the number of phone calls involved in getting a second shower added to the schedule, right?
00:16:25.163 --> 00:16:31.869
It's undervalued because it's it's deemed women's work and women's work has historically been undervalued.
00:16:31.869 --> 00:16:39.034
So it's undervalued both from like sort of a symbolic standpoint and certainly from an economic standpoint of what we.
00:16:39.062 --> 00:16:42.323
what we pay and recognize of people who are doing the work.
00:16:42.323 --> 00:16:45.166
And it comes with this really heavy mental load.
00:16:45.166 --> 00:16:49.366
So there's a lot of balls to keep in the air.
00:16:49.787 --> 00:17:00.051
I would say within many families, the research tells us care work tends to fall on women or daughters when we're talking about aging parents.
00:17:00.552 --> 00:17:04.272
And that's a little bit different in the situation.
00:17:04.453 --> 00:17:06.023
Yeah, yeah, yep.
00:17:06.023 --> 00:17:08.214
Or daughter-in-laws, absolutely.
00:17:08.403 --> 00:17:20.248
Um, and so that's a little bit different in my personal situation, since my brother is the one in Minnesota and he has had to do certainly much more of the care work than I have.
00:17:20.248 --> 00:17:35.734
But, you know, I have really felt a pretty strong obligation to try to minimize the load on him by taking on much more of that mental load and really trying to make sure that I'm doing the behind the scenes stuff and I'm doing the communication.
00:17:35.894 --> 00:17:38.787
you know, I'm going into my chart and I'm messaging the neurologist.
00:17:38.787 --> 00:17:43.900
So she's receiving Lecanomab infusions for the Alzheimer's.
00:17:44.961 --> 00:17:49.785
You know, her next appointment, you know, would have been a few days after she came home from the hospital.
00:17:50.145 --> 00:17:54.808
Should she be continuing to receive the infusions right now, or should we just focus on letting the leg heal?
00:17:54.808 --> 00:18:02.673
So all those sorts of little pieces of communication are sort of the kinds of things that I've tried to take off his plate.
00:18:03.424 --> 00:18:07.179
I would say as a result, we're both carrying pretty heavy mental loads right now.
00:18:07.179 --> 00:18:16.067
And then that just becomes a lot to juggle when you're also trying to juggle, you know, getting your kid to soccer and parent conferences.
00:18:16.067 --> 00:18:19.711
And we both work full time, both my brother and I, right?
00:18:19.711 --> 00:18:26.998
So it's, you know, I think we're both hitting a breaking point pretty, pretty quickly here.
00:18:26.998 --> 00:18:49.881
So how have you been able to, what are some strategies that you have used to manage your own stress and your own mental load in terms of the, you know, this is very emotionally charged type of interactions, especially with your mom who's actively resisting your help and your care.
00:18:52.724 --> 00:18:58.439
Yes, that has been particularly challenging this week.
00:18:59.174 --> 00:19:04.122
I have a different relationship with my mom than my brother does.
00:19:04.934 --> 00:19:08.726
I was closer with my dad than with my mom.
00:19:09.006 --> 00:19:17.731
And she's suspicious of anything that I have to say.
00:19:18.835 --> 00:19:21.480
I don't know if suspicious is quite the right word, but...
00:19:21.480 --> 00:19:23.318
She doesn't trust you as much.
00:19:23.318 --> 00:19:26.105
for instance, to go back a little bit further.
00:19:26.894 --> 00:19:28.565
Oh, sorry.
00:19:28.779 --> 00:19:30.176
I jumped in.
00:19:30.176 --> 00:19:35.971
I was going to say just that she doesn't seem to trust you as much as trusting your brother.
00:19:43.221 --> 00:19:44.355
Yeah, I'm sorry.
00:19:44.355 --> 00:19:46.471
It's getting garbled again.
00:19:46.471 --> 00:19:50.150
So I think I understand the question if you want me to just try to respond to it.
00:19:50.150 --> 00:19:58.396
Yeah, I just was just validating that it sounds like she doesn't trust you as much as she trusts your brother.
00:20:01.684 --> 00:20:03.195
Yeah.
00:20:03.214 --> 00:20:28.308
So, so, so when it comes to the medication, she, you know, he has been, he's probably been a little bit less, um, strict about it than, than I would be, but you know, he's checking now every day to, know, he's kind of setting her up with a plate of pills and checking to see if they've been taken at the end of the day.
00:20:28.390 --> 00:20:39.304
And before she got the leg infection, He thinks that like she, first of all, she was on a three day, three times a day antibiotic.
00:20:39.304 --> 00:20:42.965
And at one point she just said, I don't wanna take medications three times a day.
00:20:42.965 --> 00:20:45.586
I'm only gonna take medications twice a day.
00:20:45.948 --> 00:20:57.515
And well, that's not the way a three times a day antibiotic works and your incision is not looking good and the doctor wants you to take this three times a day.
00:20:58.067 --> 00:21:01.147
Um, so he was the one kind of dealing with that.
00:21:01.147 --> 00:21:04.548
Once the infection happened, the second surgery happens.
00:21:04.548 --> 00:21:20.073
became pretty strongly suggesting that we need to make sure she is taking this now four times a day, stronger antibiotic on a very regular schedule, um, suggested that perhaps we should have the assisted living facility, administer it.
00:21:20.073 --> 00:21:25.734
She was very resistant to paying the extra costs that would come with them administering the medication.
00:21:26.371 --> 00:21:39.255
So before my brother left on his trip, I proposed that she take the take her medications four times a day with me on FaceTime.
00:21:39.255 --> 00:21:42.405
And she sort of, you know, was like, oh, sure, fine.
00:21:42.405 --> 00:21:49.376
Like anything to avoid having to have having to pay the money for the facility to administer it.
00:21:50.057 --> 00:21:54.462
So the first time that I called, she seemed surprised and a little.
00:21:54.462 --> 00:21:59.703
not thrilled about it, but my son was on FaceTime with us and so she did it.
00:21:59.704 --> 00:22:05.026
I sort of knew that the bedtime phone, the 10 PM phone call was not going to go well.
00:22:05.266 --> 00:22:08.326
And boy did it not go well.
00:22:09.867 --> 00:22:16.279
The level of animosity expressed towards me in that phone call was pretty stunning.
00:22:16.279 --> 00:22:19.131
And my brother's flight, I think, hadn't even taken off yet.
00:22:19.131 --> 00:22:20.578
He was still at the airport.
00:22:20.578 --> 00:22:25.621
Um, and I was like, Oh, how are we going to do this for another week?
00:22:25.621 --> 00:22:38.237
So, um, so I had to kind of regroup after that because there was no way I could subject myself to that sort of situation four times a day for the whole week.
00:22:38.237 --> 00:22:43.163
So I spoke with an aunt who was going to visit her on Monday to kind of check in.
00:22:43.163 --> 00:22:51.519
And we sort of decided that, you know, this might be a situation where we just have to kind of let the chips fall as they may.
00:22:51.699 --> 00:23:00.224
And maybe that will provide some clarity over like what really, structurally needs to be in place.
00:23:01.346 --> 00:23:18.698
So, but from the standpoint of sort of coping for myself, I would say I've really just had to talk to a lot of friends who sort of understand the dynamic that I'm dealing with and how frustrating the situation can be.
00:23:19.238 --> 00:23:23.721
Luckily, I have a therapist who's very helpful as well.
00:23:23.721 --> 00:23:33.236
So, it's, you know, and then kind of figuring out when I'm gonna hit my limits or where in this case, I sort of did hit my limit, right?
00:23:33.236 --> 00:23:36.978
I'm like, okay, I can keep doing X, Y, and Z.
00:23:36.978 --> 00:23:37.917
I can communicate.
00:23:37.917 --> 00:23:42.615
She wanted her meal plan canceled with the assisted living facility because she hates going down to dinner.
00:23:42.615 --> 00:23:45.116
She says she's fine eating what Justin left in the fridge.
00:23:45.116 --> 00:23:49.861
So this is not ideal long-term, but okay.
00:23:49.861 --> 00:23:51.842
Everyone wants me to cancel the meal plan.
00:23:51.842 --> 00:24:03.211
I can email with the folks at the place and adjust her health service level that's taking her to meals and cancel the meal plan for the next month and so on.
00:24:03.211 --> 00:24:12.707
And so I think I might need to shift my lane once my brother returns as far as possible towards behind the scenes effort.
00:24:12.707 --> 00:24:23.217
and the person who has the less complicated, less contentious relationship to be the one to do the interactive care work.
00:24:23.217 --> 00:24:24.738
yeah.
00:24:24.738 --> 00:24:25.469
That's great.
00:24:25.469 --> 00:24:49.912
And I think I think that takes so much self awareness to know like when to push and when not to push and also accepting that a bad outcome of potentially a worsening infection may be the outcome that has to happen because you cannot physically go there to check on and make sure she takes it four times a day.
00:24:51.080 --> 00:25:03.060
And I know you mentioned earlier that when your son was on FaceTime, she sort of had a slightly better behavior than when she was later in the night when you called her.
00:25:03.601 --> 00:25:09.760
tell us, how is your son's relationship with your mom?
00:25:09.760 --> 00:25:12.500
How does she think of your son?
00:25:13.861 --> 00:25:15.401
Tell us more.
00:25:15.627 --> 00:25:16.413
Mm-mm.
00:25:18.144 --> 00:25:19.255
Yeah.
00:25:19.935 --> 00:25:27.420
So, you know, she is my son's only grandparent because I'm his only parent and my dad died before he was born.
00:25:27.420 --> 00:25:35.355
So, you know, he's he's pretty invested in his relationship with her and he knows that she can be.
00:25:35.684 --> 00:25:41.258
He was on Sunday, he was saying, you know, because he heard me telling some friends about what had happened the night before.
00:25:41.258 --> 00:25:45.410
he said, Grandma, Irene is really being quite jerky.
00:25:45.410 --> 00:25:49.740
And I was like, you know, Yeah, she is kind of being a jerk.
00:25:50.740 --> 00:25:54.701
We can't say that to her the next time we talk to her though.
00:25:56.083 --> 00:26:01.971
And when she first broke her leg and I told him, know, Grandma Erin broke her leg, he did start to cry.
00:26:01.971 --> 00:26:03.652
He was very upset.
00:26:03.652 --> 00:26:10.209
He was, you know, he was really worried, like when we visit this summer, will she be able to play with me?
00:26:10.209 --> 00:26:15.570
And I said, I'm not sure yet completely, but I'm pretty sure yes.
00:26:16.803 --> 00:26:28.242
And now since she has moved to this assisted living facility, unfortunately, I really do fear that that is going to be not a long-term plan.
00:26:28.242 --> 00:26:32.462
She is pretty insistent at this point that she is not going to stay.
00:26:32.942 --> 00:26:36.063
She's very insistent that she's going to drive again.
00:26:36.063 --> 00:26:42.182
I personally don't think she should have been driving from the dementia standpoint before the broken leg.
00:26:42.762 --> 00:26:51.942
I unfortunately was the one in the hospital who broke the news to her that she wasn't going to be driving with a broken leg, which I'm not quite sure why that wasn't apparent.
00:26:51.942 --> 00:26:54.584
It is her right leg that is broken.
00:26:55.846 --> 00:26:57.987
But I got to deliver that news.
00:26:58.586 --> 00:27:01.949
Well, you certainly won't be driving with the broken leg.
00:27:02.910 --> 00:27:08.338
But she is, you know, when my aunt went to visit, she was very, I will be driving again.
00:27:08.338 --> 00:27:10.013
I will be driving.
00:27:10.858 --> 00:27:11.625
So.
00:27:11.625 --> 00:27:18.037
At any rate, back to my son, you know, he also would like to think of her going, he likes Grandma Irene's house.
00:27:18.037 --> 00:27:25.538
So he would like for her to be back at her house when she, when we visit in June.
00:27:27.299 --> 00:27:36.582
So I've had to, you know, there's been a couple of times on FaceTime where he starts to ask and I'm going like making the hand motions like, stop, do not ask this question.
00:27:36.582 --> 00:27:38.755
Do not bring up this topic.
00:27:38.755 --> 00:27:43.315
about going home because we really do not think that's feasible.
00:27:43.315 --> 00:27:47.494
But yeah, she's pretty insistent that that's what's going to happen.
00:27:47.875 --> 00:27:53.355
yeah, so it's been interesting.
00:27:53.755 --> 00:28:08.098
And then just as I sort of consider my own position and things, the extent to which I can set boundaries is limited when I'm also trying to facilitate.
00:28:08.098 --> 00:28:30.719
their relationships, their ongoing relationship and understanding that it is, and maybe being one of the few people in the situation who recognizes it to be very time limited at this point, that there's actually not many months or years left where he'll be able to, where she'll even necessarily recognize him.
00:28:30.739 --> 00:28:36.098
So really wanting to kind of protect that for him a little bit right now.
00:28:36.490 --> 00:28:39.713
It's obviously made me really have to rethink our summer plans.
00:28:39.713 --> 00:28:41.575
We were planning to visit for a week.
00:28:41.575 --> 00:28:46.310
Being in Minnesota is not always the easiest situation for me to be in.
00:28:46.400 --> 00:28:51.344
And now possibly I'll be cleaning out the house and will need to be there for longer.
00:28:51.344 --> 00:29:04.674
Or even if that's not the situation, this just is a window of time for him to spend with her before she continues down this path of dementia where his time with her will be even less.
00:29:04.832 --> 00:29:06.709
you know, rewarding for him.
00:29:06.961 --> 00:29:07.882
So.
00:29:08.142 --> 00:29:08.907
Yeah.
00:29:08.907 --> 00:29:34.424
thing for you to hold in your heart and mind because even though your relationship with your mom is complicated as my relationship with my mom was complicated, I also had a similar awareness that my children's time with my mom was limited and I was right and that we made a lot more trips than I...
00:29:34.739 --> 00:29:38.172
probably would have otherwise made if it was just myself.
00:29:38.413 --> 00:29:39.273
Yeah.
00:29:40.276 --> 00:29:44.559
And what have you told your son about your mom's memory problems?
00:29:48.682 --> 00:30:01.479
Yeah, so one of the maddening things about Aldis for me is that both of her parents had dementia, whether it was both Alzheimer's, I think is an open question.
00:30:01.479 --> 00:30:05.470
She also had a sister who had frontal temporal dementia.
00:30:05.470 --> 00:30:08.132
So there's a lot of dementia in this family.
00:30:08.132 --> 00:30:10.502
Her mom actually died before I was born.
00:30:10.502 --> 00:30:13.294
She had it even earlier than her.
00:30:13.493 --> 00:30:22.762
But my grandfather had had dementia when I was, he was in his eighties, but I was in elementary school.
00:30:22.762 --> 00:30:28.423
So I had known him as sort of like a sweet, loving guy who knew me when I was little.
00:30:28.423 --> 00:30:33.522
But by the time I think he died, I was maybe in middle school when he died.
00:30:33.522 --> 00:30:36.623
And for several years before that, he was in the nursing home.
00:30:36.623 --> 00:30:39.563
He had absolutely no idea who we were.
00:30:39.563 --> 00:30:45.987
He thought that horses were outside the nursing home waiting to come get him for.
00:30:45.987 --> 00:30:47.907
and go meet his parents or something, right?
00:30:47.907 --> 00:30:51.568
Like he had absolutely no orientation to the present.
00:30:51.608 --> 00:31:04.263
So I have used that experience to sort of try to explain to my son that this is the path that we're on and that this is sort of what we're preparing for.
00:31:04.263 --> 00:31:08.775
That there might come a time when Grandma Irene won't know who we are.
00:31:09.090 --> 00:31:20.351
Um, we're not there yet, but right now she, you know, the place that we were at even a year ago, actually I'd say a year and a half ago, she would ask us the same question over and over again.
00:31:20.611 --> 00:31:30.530
You know, she was here around, um, think it might've been Thanksgiving break and, know, so Matthew, when do you go back to school or no, it was new years.
00:31:30.530 --> 00:31:31.490
It was the January.
00:31:31.490 --> 00:31:32.590
So when do you go back to school?
00:31:32.590 --> 00:31:33.711
Do you go back to school on Monday?
00:31:33.711 --> 00:31:35.730
Like, nope, I don't go back to Wednesday.
00:31:35.730 --> 00:31:38.595
And then five minutes later, the same.
00:31:38.595 --> 00:31:40.994
question and he did start to get impatient.
00:31:40.994 --> 00:31:46.595
Like I just told you that I'm not going back to school until Wednesday.
00:31:46.755 --> 00:31:50.815
So I would, you know, I would try to encourage him like, nope, that's, that's not helpful.
00:31:50.815 --> 00:31:54.154
You know, we just are, we're just going to keep answering the question.
00:31:54.154 --> 00:32:01.414
We're just going to keep calmly answering the question and you know, to just kind of try to help him understand that trajectory.
00:32:01.414 --> 00:32:02.855
Like here's where we're at now.
00:32:02.855 --> 00:32:07.414
Right now she's asking us the same question many times in a row.
00:32:08.269 --> 00:32:13.020
we're gonna get to a point where she might not know who we are.
00:32:13.260 --> 00:32:16.602
And that doesn't mean that she doesn't love you anymore.
00:32:16.602 --> 00:32:21.003
That just means that this disease is taking over her brain.
00:32:21.663 --> 00:32:31.147
And she, think he's has a little bit extra foundation for understanding that because of what I've told him about my dad and the brain tumor.
00:32:31.588 --> 00:32:40.789
that was one of his, hers very early exposures to understanding what death is was, understanding like where, why is Grandpa Dale not here?
00:32:40.789 --> 00:32:41.390
What happened to him?
00:32:41.390 --> 00:32:42.009
Well, he died.
00:32:42.009 --> 00:32:43.172
Well, what does it mean to die?
00:32:43.172 --> 00:32:44.472
Your body stops working.
00:32:44.472 --> 00:32:45.894
Why did his body stop working?
00:32:45.894 --> 00:32:49.237
There was a disease in his brain that made his body stop working.
00:32:49.357 --> 00:32:55.815
So really kind of trying to use that same framework to help him understand the situation with my mom.
00:32:55.815 --> 00:33:12.763
Yeah, that sounds like it must be hard to also talk about sort of over and over and kind of break it down into very, very concrete terms in terms of, you know, that she may not recognize you.
00:33:13.035 --> 00:33:14.596
How did he respond to that?
00:33:14.596 --> 00:33:22.210
Or does he seem like he was okay because you made it sort of an expected future?
00:33:25.227 --> 00:33:34.250
Yeah, I think, you know, we've always from a pretty young age talked really, you know, I teach a class on death and dying.
00:33:34.291 --> 00:33:36.643
I write about this stuff in my research.
00:33:36.643 --> 00:33:57.579
So I'm pretty committed as a person to trying to make space for these kinds of conversations and to try to destigmatize sort of the taboo around talking about you know, death or other hard things or grief and so on in, you know, our otherwise death phobic society.
00:33:57.579 --> 00:34:02.874
So we've always had these sorts of conversations.
00:34:02.874 --> 00:34:09.458
And so I think he's used to them being pretty just matter of fact, there's no questions that he can't ask.
00:34:09.458 --> 00:34:12.130
There's no feeling he's not allowed to have.
00:34:12.150 --> 00:34:18.235
And so, so luckily this was not, yeah, this was not the first time that we were.
00:34:18.572 --> 00:34:34.492
having a, we'd had so many other conversations like this about my dad, about, you know, what could happen, you know, any fear that he has about what could happen to me and why it's very, very unlikely that that will happen to me at any time in the near future.
00:34:35.094 --> 00:34:42.268
But then being able to introduce like, okay, well now we are on this path with Grandma Irene, but it's not happening right now.
00:34:42.268 --> 00:34:43.804
It will happen in the future.
00:34:43.804 --> 00:34:44.407
Gotcha.
00:34:44.407 --> 00:34:48.068
So yeah, so I'd say he was able to roll with it pretty well.
00:34:48.068 --> 00:34:55.626
kids in general, like when she broke her leg and I delivered that news, he became extremely upset for a little while.
00:34:55.626 --> 00:35:11.514
And we just kind of sat in that space and I let him cry and validated how upsetting it is that this happened and that he might not be able to have exactly the same kind of engagement with Grandma Irene this summer that he's had in previous summers.
00:35:11.954 --> 00:35:12.795
And...
00:35:13.835 --> 00:35:17.422
I mean, within probably 20 minutes later, he's off playing again.
00:35:17.422 --> 00:35:25.478
So, which of course is what we know about how kids process hard things is that they don't stay in it for super long.
00:35:25.478 --> 00:35:25.934
Yeah.
00:35:25.934 --> 00:35:26.914
that's good.
00:35:26.914 --> 00:35:41.248
think as adults, we forget that kids have, you know, just a short attention span and that they're not constantly necessarily thinking about grandma dying, which we might be thinking about.
00:35:41.248 --> 00:35:47.894
But thankfully, they're able to, you know, refocus on to something that's more fun and play.
00:35:48.476 --> 00:36:06.744
So I think that Perhaps the last question that I have for you is that, what did you find surprising about this recent journey or recent changes in terms of her care or your relationship and being her care partner?
00:36:11.648 --> 00:36:13.940
Yeah, oh, that's a big one.
00:36:13.940 --> 00:36:23.097
think there's, you know, it's sort of both and like, you know, that everything that's surprising is really not surprising or shouldn't be surprising.
00:36:23.097 --> 00:36:26.681
But I would say, you know, then I sort of beat myself up for letting it be surprising.
00:36:26.681 --> 00:36:37.998
I would say one thing that comes to mind is just in general as somebody who it's been really challenging as somebody who studies.
00:36:38.391 --> 00:36:47.954
death and dying and aging and just medicine from a social standpoint in general and help other people.
00:36:47.954 --> 00:36:53.516
You know, in my death and dying class, my students have to engage in end of life planning.
00:36:53.516 --> 00:37:00.300
like, you know, they don't actually have to go get paperwork notarized or anything, but I strongly encourage them to do that.
00:37:01.119 --> 00:37:12.958
So when my mom was first diagnosed with Alzheimer's about a year ago, I started pushing really hard on is the power of attorney updated?
00:37:14.219 --> 00:37:15.418
What's with the will?
00:37:15.418 --> 00:37:18.159
I think actually we need everything to be in a trust.
00:37:18.159 --> 00:37:26.039
And actually, when you have a diagnosis of dementia, you might require many years of long-term care.
00:37:26.039 --> 00:37:28.338
Memory care is very expensive.
00:37:28.938 --> 00:37:33.099
What is our, you know, what's the financial situation around that?
00:37:33.179 --> 00:37:51.543
My mom, owns this little farmhouse that she grew up in that, you know, was passed on to her that she's, you know, up until this happened, she still enjoyed going down and spending weekends at my brother enjoys going down and spending weekends in this little farmhouse in the middle of nowhere.
00:37:51.543 --> 00:38:10.532
I don't know that it has any real value economically, but I do know that we could be forced to quote, sell this farmhouse before she would qualify for any long-term care support if we didn't take financial strategies to protect that house.
00:38:11.213 --> 00:38:17.556
So I tried to raise that early on and that was, you know, a year ago and none of that is in place.
00:38:18.838 --> 00:38:28.847
And that's been hard for me because my identity is kind of invested in like, I'm someone who knows how this works and I know what should be happening.
00:38:28.981 --> 00:38:31.692
And I should be making that happen.
00:38:32.432 --> 00:38:46.842
But again, she's not, mean, and I have raised it many times and it has led to contention in which, you know, she ultimately just gets a little ornery and says, I am perfectly competent to make all my own decisions and you know, so on and so forth.
00:38:47.262 --> 00:38:58.451
you know, and then I think my brother just gets, you know, in this tough spot where he's, you know, like he agrees with me that it should happen, but he's not really going to take on, he's not going to himself make it happen.
00:38:58.451 --> 00:38:59.130
So.
00:38:59.574 --> 00:39:00.556
We're at a different moment.
00:39:00.556 --> 00:39:19.331
I think it'll happen now, but it is, you know, it might happen now, but it's going to be a lot harder because it is way harder to get people to talk about the end of life when they have to actively accept that they are dying than when you're talking about as just in case.
00:39:19.570 --> 00:39:29.398
And so that's why I always encourage my students have these conversations with your parents now when there is no immediate reason to think you would need these documents.
00:39:29.409 --> 00:39:35.262
because it becomes a lot more harder and threatening to people when you're having the conversation in the moment of need.
00:39:35.262 --> 00:39:46.594
So I shouldn't be surprised that that's been so hard for me to accomplish in my own family, but it's, you know, emotionally just, you know, you're still surprised.
00:39:46.594 --> 00:39:49.097
You're like, how can this be happening?
00:39:49.277 --> 00:39:52.260
So that's one thing.
00:39:52.260 --> 00:39:55.443
And then I would say just, yeah, just in general.
00:39:56.257 --> 00:40:04.391
You know, shouldn't be surprised that my mom was so upset about the medications, but it's like, wow, that was a really, really big pushback.
00:40:04.391 --> 00:40:08.711
Shouldn't be surprised about the level of denial around the dementia.
00:40:09.373 --> 00:40:11.373
But you know, there'll be a moment of acknowledgement.
00:40:11.373 --> 00:40:15.945
I guess she did say to my brother at one point the week before he left, like, my mind is just gone.
00:40:15.945 --> 00:40:17.927
Since all of this happened, my mind is just gone.
00:40:17.927 --> 00:40:21.878
And so then I get hopeful that like, okay, she recognizes the situation.
00:40:21.878 --> 00:40:23.659
We're gonna make some progress.
00:40:23.690 --> 00:40:30.054
And then we immediately wound up in the medication situation of, nope, I've never forgotten to take a pill ever.
00:40:30.054 --> 00:40:34.335
am completely able to, you how dare you challenge my competency.
00:40:34.335 --> 00:40:41.927
So intellectually, it's not surprising, but the embodied experience of it is still, it's still jarring.
00:40:41.927 --> 00:40:43.315
Yeah.
00:40:43.315 --> 00:41:03.932
think that is such a I resonate with that as well, because during my mom's journey with ovarian cancer, there were there were things that I was like, I was surprised that she would even want to do like she she really wanted to try.
00:41:03.932 --> 00:41:18.407
the anti-parasitic for cancer treatment and no amount of convincing and me saying that this is not real science, please don't, was convincing, was able to persuade her not to.
00:41:18.753 --> 00:41:26.516
And I think that especially for us who probably rely on our logic.
00:41:27.003 --> 00:41:44.021
in our day to day world, that it's very difficult to deal with someone who's illogical, or that they kind of change from day to day and hour to hour, you know, sometimes they're very reasonable and self aware and other times they're not.
00:41:44.021 --> 00:41:55.431
So and that's, that's, that's another additional challenge, I think, with dementia compared to say, some of the other, you know, terminal conditions that does not affect your mind.
00:41:55.431 --> 00:42:00.356
So But I really appreciate you joining us today.
00:42:00.356 --> 00:42:02.298
Yeah, go ahead, Amanda.
00:42:05.777 --> 00:42:11.592
I was just going to say the devaluing of expertise.
00:42:11.592 --> 00:42:22.300
I think that's been another thing that's been really, like I have some expertise in this arena and it's completely devalued within my own family.
00:42:22.300 --> 00:42:25.713
And that's just a hard rock to hit up against.
00:42:25.713 --> 00:42:30.347
So yeah, I can very much resonate with that.
00:42:31.409 --> 00:42:34.143
The very last thing that I wanted to ahead.
00:42:36.798 --> 00:42:38.271
Oh, no, go ahead.
00:42:38.271 --> 00:42:53.164
going to say that I think for some reason our parents always think of us as their child who perhaps did not have this expert knowledge from the time that we spent with them and as in childhood.
00:42:53.164 --> 00:42:58.206
So in their mind, we're probably still 15 and know nothing.
00:42:58.206 --> 00:43:07.329
And so even though we have accumulated all this knowledge since then, they're like, no, no, no, you don't know what you're talking about.
00:43:07.369 --> 00:43:18.856
You Right, yeah, it's like I only earned a PhD in this, you know, like, yeah, fine, I know nothing, let's just go with whatever.
00:43:19.677 --> 00:43:37.875
But yeah, I think the last thing I wanted to say just from the Sandwich Generation standpoint, that's been really hard for me personally is just, you I think losing a parent or going through the end of life phase at any point in life is a really hard transition for anyone, but I think it's...
00:43:37.875 --> 00:43:43.735
extra hard when you're crossing that threshold before most of your peers are.
00:43:43.920 --> 00:43:49.068
And, you know, I was 31 when my dad was diagnosed with glioblastoma and 32 when he died.
00:43:49.068 --> 00:43:50.706
I am 43 now.
00:43:50.706 --> 00:44:07.739
And most or at least very many of my friends and colleagues have healthy parents who are still providing childcare, who are going on vacations with their grandchildren, who are visiting, you know, they are just inhabiting a completely different universe.
00:44:07.840 --> 00:44:11.592
then I have inhabited and that my son will inhabit, right?
00:44:11.592 --> 00:44:19.175
And I know you have had that same experience, Mia, and that that is just really hard.
00:44:19.175 --> 00:44:37.666
And so I think that just makes it even more important to find other people who are in this sort of unfortunate club at a younger age to just really sort of like lament and grieve what you lose when you are going through this.
00:44:37.666 --> 00:44:43.527
at this age, my therapist asked me when I said, I do not want to spend the summer cleaning up my childhood home.
00:44:43.527 --> 00:44:45.467
And she's like, well, when do you want to?
00:44:45.467 --> 00:44:47.786
And I was like, when I'm 57.
00:44:47.786 --> 00:44:50.387
I want to do it when I'm 57.
00:44:51.186 --> 00:44:54.487
That's when I want to do it.
00:44:56.907 --> 00:45:02.507
I will not have any, no childcare responsibilities, right?
00:45:04.451 --> 00:45:05.130
when I want.
00:45:05.130 --> 00:45:08.590
That's when I'll have the time and space and mental energy to do that.
00:45:08.751 --> 00:45:26.391
So, but on the flip side of that, I do think it has put me in a position to that even when colleagues who are 10, 15, 20 years older than me, and they are going through that transition when they're 57, that I'm able to provide support to them that I otherwise wouldn't be able to about just what it is like to lose a parent.
00:45:26.391 --> 00:45:33.490
And certainly for other people who are going through it at this earlier stage to really kind of know how to provide.
00:45:33.568 --> 00:45:39.722
you know, not perfectly or anything, but be a little better positioned to feel like, you know, I can really reach out and provide that support.
00:45:39.722 --> 00:45:49.625
And that has deepened relationships with, you know, colleagues that, you know, I otherwise would just have professional relationships with, but, you know, oh, I feel for you.
00:45:49.625 --> 00:45:50.735
I just went through this.
00:45:50.735 --> 00:45:59.068
Let's, let's have a cup of coffee or get drinks or something and really just talk about what it's like, because we, put, we spend a lot of it.
00:45:59.068 --> 00:46:03.414
We put a lot of attention on other life transitions, marriage, parenthood.
00:46:03.414 --> 00:46:15.539
becoming an empty nester, but we really don't talk about this sort of milestone transition in life, what it's like to face your own mortality at a younger age when you have lost parents at a younger age.
00:46:15.599 --> 00:46:23.143
So I think that's, you know, one sort of, yeah, that's just another component of this experience of being in that sandwich generation.
00:46:23.143 --> 00:47:00.505
Yeah, yeah, no, I think thank you for bringing that up because I don't think I necessarily realized that the difference in terms of decade that you you and I are are dealing with and how young our children are versus perhaps some of the, I guess, more older, older sandwich generation folks who might have their own grandchildren at a time that they're losing their parents, which was definitely the case for say my grandparents had me, I was already born at the time that my great grandmother died.
00:47:00.505 --> 00:47:08.376
And that's just such a different stage of life compared to losing your parent young.
00:47:09.117 --> 00:47:14.028
And I think it's a uniquely vulnerable transition.
00:47:14.028 --> 00:47:18.190
And I'm really glad that we're able to have this conversation today.
00:47:18.190 --> 00:47:20.871
And we're going to wrap it up here.
00:47:20.871 --> 00:47:29.041
But if you Feel like this conversation has helped you or validated your experience as a sandwich generation caregiver.
00:47:29.041 --> 00:47:37.242
Please share this episode with others and leave me a review on your podcast platform and talk to you next time.
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Thank
