Episode Transcript
[00:00:02] Speaker A: I also think it's nice to say to the caregiver, hey, I would love to take your loved one for a walk and why don't you have that time to take a nap? So proactively offering some respite care if possible is also a lovely thing to do if you have the capacity for it, rather than waiting for that person to ask you for it.
[00:00:36] Speaker B: Welcome to the Age of Aging, a.
[00:00:38] Speaker C: Podcast about living well with an aging.
[00:00:40] Speaker B: Brain produced by the Penn Memory Center.
[00:00:43] Speaker C: I'm Jake Johnson.
[00:00:45] Speaker D: And I'm Terrence Casey.
[00:00:47] Speaker B: Hey Terence, how's it going?
[00:00:49] Speaker C: Good, good.
[00:00:49] Speaker D: How are you today?
[00:00:51] Speaker B: Pretty good. It is a 75 degree day in November so it's not feeling like the holidays are coming up, but they are approaching. Do you have any plans for the holidays this year?
[00:01:03] Speaker D: Well, we're, we're lucky to have both my family and my in laws in this area. And so we, we tend to have some time in our own home with our immediate family and then with both sets of grandparents. So we're pretty lucky that way. How about you? Any travel plans or.
[00:01:23] Speaker B: Being in my mid-20s, it's a little weird to figure out the holidays cause now I have a long term partner and it's become a discussion about which holidays we do for which. So I think Thanksgiving seems like it's going to be with her family and then we might split up, do Christmas. My family, you know, it's a whole, it's a whole thing you have to work out. But luckily a lot of our family lives in a very similar place so that makes that a lot easier. Do you ever do the, the whole hosting thing?
[00:01:53] Speaker D: We don't. And you know, it's funny, we, when we moved into our house more than 10 years ago, we inherited my wife's grandmother's china set. And I'm looking at it while we're recording here and we have never used but maybe three or four pieces from that set because we don't host holidays. My wife and I are each one of five kids and we are the children of mothers who still want people to come to them. And so our holidays are almost exclusively at our parents houses.
[00:02:29] Speaker B: I also think getting older, it's still a really nice time of year to get together with family. But I get a little bit more dread going into this time of year now with figuring out travel plans, getting people gifts. So that was kind of our thinking with this episode was that we wanted to address the holidays as like a time that is both really special and important, but also one that is very Stressful. Stressful for everybody, but especially stressful for caregivers who, on top of figuring out travel plans and hosting and shopping, they also have to take care of a loved one, make special accommodations for them, communicate with their family about a person's condition and what that might entail. It's a lot to navigate socially. So I reached out to director of Social Work at pmc, Allison Lynn to just talk about some general tips for this holiday season and things to keep in mind for the next few months as you're planning ahead as a caregiver.
[00:03:35] Speaker D: Yeah, I can appreciate that. We, we've talked in previous episodes about some of the, the parallels of caring for older adults and caring for young children. And I think one of the areas of overlap really is sort of the logistical challenge of planning out a holiday or any sort of get together. Someone has to take the lead about timing and navigation and what the itinerary is when we're there. One of the things I recall, you know, I mentioned we've been in this house now for a decade. When we first bought our house, I was very excited to have my grandfather, who was in his 90s at the time, come to visit. And one of the first questions he asked me was, do you have a first floor bathroom? And that had not even crossed our mind when we were buying our house as, you know, a couple in our 20s. And I was sort of heartbroken. He was saying, you know, I don't know that I'll ever be able to come to your house because of that. And that was a real eye opener for me that, in that moment. And so, yeah, that would have been a challenge for just a quick visit and maybe a small dinner, just getting pizza and watching the Eagles game or whatever it was we were talking about at the time. But the holidays turn that up to 11. You know, all the dinners have to be fancier and the guest list is longer and the needs are increased. But Alison is a great person to talk about this. She has been navigating care issues for older adults at Penn Memory center for, I think about a decade now. So I'm looking forward to hearing what she has to say.
[00:05:17] Speaker C: The holiday season is quickly approaching us, and on the one hand, this is a time for family and celebration, but on the other, it can also be a chaotic and often stressful time. You may be hosting, traveling and or navigating complicated family dynamics. The holidays are also a time of year when you might interact with someone older in your family who has memory loss or a condition like dementia or maybe You're a caretaker having to consider what this holiday season will look like for you and your loved one. And right now you're trying to figure out what's going to be possible for you both this year. To help you make a plan and hopefully lower some stress in the next few months, I spoke with Penn Memory center social worker Allison Lin about some tips for the holiday season.
[00:06:01] Speaker A: My name is Alison Lin. I'm a licensed clinical social worker, and I am the director of social work at the Penn Memory Center.
[00:06:08] Speaker C: Allison began with her most important tip for caregivers during the holidays that she said to keep in mind throughout your planning, adjust your expectations for what's possible this year.
[00:06:18] Speaker A: So a lot of families have traditions that they've been doing for years and years and generations, and I know that those traditions are important and meaningful, but you might need to get a little bit more flexible with them than in other years and choose sort of where your priorities lie. So, for example, if you have always taken a flight from the east coast to California every year, is there a chance that that family could actually come to you this year to cut down on your need for kind of stressful air travel?
[00:06:46] Speaker C: If you need to travel for the holidays, Allison said, there's a few things you should keep in mind. One is that the person you're caring for is going to be most likely more disoriented than usual for a few days until they settle into a routine or you return home. The only thing you can really do for this, Allison said, is to try not to worry too much about it and know that this is normal for someone with dementia. Traveling.
[00:07:08] Speaker A: I would say consider also that if you're flying or even if you're driving, there's a lot of sensory stimulation in these spaces. So especially in the airport, there's a ton of people, there's really bright lights, there's announcements piping up all the time. So that's going to impact someone's sense of overwhelm and disorientation as well. And so you just want to keep a closer eye on the person you're caring for, regardless of what stage of disease they're in. So, for example, let's say you are caring for your wife, and it's always been that when you go out in public together, maybe you go to a restaurant and she says, I'm going to go to the bathroom, and you say no problem, and you can stay at the table and she can navigate her way to the bathroom and then back to the table. I would say with travel with A disruption in routine with a change in environment and with a lot of sensory stimulation, that might not be such a sure bet anymore. So I would be a little bit more overly cautious than you are perhaps in your day to day life in terms of escorting someone to the bathroom and maybe waiting outside or walking with them to get a snack instead of sending them out on an independent errand. So for air travel, one thing that I would definitely do is I would go to tsacares.gov and report that you're traveling with someone with cognitive impairment. And usually this will allow you, if not to go to the front of the security line itself to request a sensitive screening. So if, for example, you're traveling with someone who can't respond to oral commands like put your arms up, time to walk through the metal detector, TSA will know what's going on and won't escalate the situation further. For people who need a wheelchair assist, you can also get a wheelchair to be pushed through the airport into the gate. I would also say for traveling, especially for air travel, to have some kind of identification bracelet on the person that you're traveling with, on the person with dementia, it doesn't have to look like a medical alert bracelet. There's lots of really nice, more aesthetic medical jewelry options available now online. And I would make sure that it has the caregiver's name and the caregiver's phone number in addition to the person with dementia's name. I would also consider putting some tracking either on that bracelet, on that person's phone, phone, if they carry a phone, or even on something like an Apple airtag that you can stick in a shoe or clip to a belt loop just in case that person gets separated from you and you need to find them.
In terms of travel in a car, like a long road trip, I would try and pre map out your route ahead of time and decide where you're going to stop. So even if you and your spouse or you and your parent used to drive eight hours without stopping, no problem. I would plan to make frequent stops and maybe even to break the trip up into two chunks. So, for example, drive halfway there, stay at a hotel overnight, and then drive the rest of the way the next morning, I would pre map out where the rest stops are and I would try and figure out where the ones with family bathrooms are. If you need to help your loved one in the bathroom, I would bring lots of food in the car, more food than you think that you need, so that if you're not at a good Place, place to stop, you don't have to stop. And for all travel, I would say leave much more time than you think you need and much more time than you use to leave for travel so that you don't feel like you're in a rush. People with dementia are very sensitive to the affect of their caregivers. And if you feel stressed out and if you feel like you're in a rush, they're going to start getting stressed out and anxious and it's going to become a negative feedback loop. Sometimes people, caregivers specifically, or people with dementia don't share their diagnosis out of a sense of shame or embarrassment or even privacy, which I certainly understand. But in my experience and in the experiences shared with me by caregivers I've worked with over many years, when you disclose that diagnosis in a setting such as travel, airline travel, a rest stop, what have you, people are really generally pretty kind and patient, but they can't be kind and patient if they don't know what's going on. If it feels hard to verbally acknowledge, the memory center has little business card size cards that are discreet that say please be patient. The person I'm traveling with has a memory disorder. We have a couple different verbiages of that and you can print those out and hand them to someone. Most people have had some interaction with someone with dementia before, especially in families, and will be kind if you give them the opportunity to do so.
[00:11:36] Speaker C: As for preparing the person with dementia for the holidays, Allison said, to make sure you don't overwhelm them and pick out a plan beforehand in case they need to get away from the group.
[00:11:45] Speaker A: In general, not just for holidays, but in general, I suggest, especially if they have short term memory loss as one of their symptoms, not telling them about an upcoming event too soon in advance gives people a lot of time to perseverate about it, to feel anxious about it, maybe even to worry that they're going to miss it or that they're missing it. So I would tell them no more than a few days in advance, unless they're specifically asking you what are we doing for, you know, Thanksgiving or Christmas or what have you. I would also pre identify wherever you're going, you know, if you're going to a relative's house or a friend's house or even a restaurant. I would pre identify a quiet space that's private that you can go to with the person with dementia if they get overwhelmed, so that if they're getting overwhelmed, you don't have to then scramble in that moment and identify like a coat closet somewhere, you know that you know so and so's adult child's bedroom is empty on the second floor. And you can go up there, turn down the lights, turn up some relaxing music and kind of decompress and reset. And if the person you're caring for with dementia is able to participate in that conversation about where that space is, I think that's a great conversation to have. What will we do if you start feeling overwhelmed and how will you tell me? Or if you're not able to tell me, what will I notice about you that will clue me in that you're feeling overwhelmed?
[00:13:03] Speaker C: Preparing friends and family can be trickier, Alison said, because we don't have control over how people act or what they say. But prepping people and asking for help can be super helpful. Start by choosing how much you feel comfortable sharing about your situation and the people you feel comfortable sharing that information with.
[00:13:20] Speaker A: You can disclose as much or as little information as you want, so you can say as much as, my husband has Alzheimer's disease and here's when he was diagnosed and here's what stage he's in. You could say as little as, my husband is suffering from a little bit more confusion than normal, a little bit more short term memory loss and leave it at that. And then I would tell people how to respond to common behaviors or common communication challenges.
[00:13:46] Speaker C: An example of this might be that a person with dementia repeats themselves in conversation often, and you can tell them that your strategy for that is to not draw attention to it and repeat yourself in the same way each time. If they have a reoccurring question, you can always tell someone to come get you if the conversation is too difficult or the person with dementia seems distressed. A common activity that Allison sees families do with people with dementia is quizzing them, which can actually be a stressful experience for a person with memory loss.
[00:14:14] Speaker A: It might seem like a good thing to bring out the family photo album and say, do you remember this? Or who's this? Or who's that? But that actually causes a lot of pressure. It's not fun for anyone if you want to bring out the family photo album and reminisce. A better way to do that is to bring it out and say, hey, point to. Point to something that you like. Point to your favorite photo on this page and see what comes out of that person after asking a very open ended question. Without that pressure, people aren't trying to be harmful by asking questions like, do you remember when? Do you remember when this do you remember when that. Because we tell caregivers and family all the time that reminiscence is great, but you can reminisce with more open ended questions. So tell me about a time when you felt really excited or tell me about a time when you felt really scared or what was your favorite trip that you ever went on rather than remember when we went to Rome, do you remember what we saw when we were in Rome? What was that restaurant that we went to in Rome? So you want to invite the person with dementia to set sort of the scene for you.
[00:15:14] Speaker C: If you're not the primary caregiver, Allison said, the best thing you can do is to ask the caregiver how you can help and also try to offer specific ways you can help them.
[00:15:24] Speaker A: I think it's great when people offer options of how they can help rather than just saying, is there anything I can do to help? That's like a pretty vague statement. And a lot of the time caregivers feel uncomfortable making specific requests. So I would say something specific to the kind of event you're having. So for example, if you're having a meal on Thanksgiving, I might say to the caregiver, are there any special accommodations that your loved one might need at the dinner table? Is there any special cutlery they need? Is there any food that they don't like anymore? Because people's tastes can change in the context of diseases that cause dementia. Is there any like assistive device that you might need? Do I need to, you know, pre cut the meat up for him or her? So it will happen situationally, but basically you want to think about any accommodations that you would offer someone with a disability who's coming to your home for an event or for a meal. I also think it's nice to say to the caregiver, hey, I would love to take your loved one for a walk and why don't you have that time to take a nap? So proactively offering some respite care if possible, is also a lovely thing to do if you have the capacity for it rather than waiting for that person to ask you for it.
[00:16:39] Speaker C: People with dementia are also prone to being overwhelmed in large social groups. So if you're hosting, one thing you could do is organize some one on one or even two on one time for family members and the person with dementia. This could be in the hours before or after dinner and a quieter location.
[00:16:55] Speaker A: So saying, well, uncle so and so is going to sit down and have some catch up time by the fire before dinner for an hour during cocktail hour and aunt so and so is going to sit at a maybe the end of the table where things are a little bit quieter and have dessert with him. So giving people specific roles.
[00:17:15] Speaker C: Finally, if you're a caregiver and you're the one hosting, Alison said to remember that first rule and adjust your expectations for yourself and what is possible this year.
[00:17:25] Speaker A: Again, please relax the rules for yourself. A lot of caregivers that I work with, and this is actually one of the things that comes up the most around the holidays, get incredibly stressed out, especially if they are, you know, the matriarch or patriarch of their family and they are regularly the person that hosts 12, 20, 30 people at their house. I think loved ones don't always understand the level of stress and overwhelm you might feel as a caregiver and might not understand that, you know, their expectations of what kind of event or what kind of dinner you can put on should be lowered. So you're going to need to set that boundary for yourself and think about ways that you can relax the rules. So if you have always made every single thing from scratch for Thanksgiving, is it okay if this year you make the turkey and then you get all the side dishes catered, or is it okay if this year you make the turkey and you make it potluck style and everyone who's coming has to bring a dish? So, like in my own family, you know, my. My mother loves to have a perfectly set table and she would never put, you know, the butter or the margarine out in the original plastic container. She has to decant it into something fancier. But we might say, can we relax the rules and just put the butter out in the butter holder this Thanksgiving? Like, we have more pressing priorities right now and you have to conserve your energy. I'll also say the holidays are a really emotional time for people. They can be really joyous, lovely, wonderful times. They can also be really, really stressful, painful times that trigger people's grief. And so I always like folks to be mindful of that and to know that it's okay. Because I think a lot of people that I work with feel even a sense of shame if they're not joyous and happy around the holidays. If instead they are struggling and grieving and having a very hard and just excited for the holidays to be over, that is also okay. You don't have to be excited about all of this. It can be incredibly stressful to coordinate, and it's often stressful to see family members who don't quite Understand what your life is like as a caregiver. That can feel really isolating. So go easy on yourself and reach out for support if you're feeling overwhelmed.
[00:19:37] Speaker D: So Alison's beginning and her end really came back to the same recommendation of adjusting your expectations around the holiday. And that really stuck with me because I think a lot about that around every Thanksgiving, Christmas, so on. When people are struggling to make the perfect dish or time everything perfectly, or there's too many people in the kitchen, or there's not enough people in the kitchen, and at some point the stress level hits ahead and somebody has to remind everyone else, like, this is a holiday, this is an occasion for joy. The appeal of these holidays, at least for me, is gathering so many family members or other loved ones in one space and dedicating time to remove the distractions outside of your relationships. One of the things that my family has been kicking around in recent years is not having Thanksgiving dinner on Thanksgiving, because my mother always says that that date is of no importance to her, and she would much rather have her kids gather in a time that they're not stressed about trying to compete with in laws, invites, or any travel plans. She was like, you know, the time around the table is a whole lot more important than November 27th or whatever it is this year. Adjust your expectations is a solid rule. My take on it essentially is consider your priorities. Is your priority to finally break out all the china that's been in that cabinet for a decade, or is it to have people as relaxed and joyful as possible?
[00:21:26] Speaker B: Yeah, I agree. I think one thing that kind of. That struck me while I was talking to Alison was that to be a caregiver, you have to be really on top of things and really be paying attention to the details, paying attention to another person, and that might translate over into wanting to have a perfect holiday situation. And if you're the one taking care of a parent, you might also. I don't know if this is true broadly, but personality wise, might be the person that's hosting or is doing a lot of the family caretaking and socializing.
And I think it's important to remember to be easy on yourself and to kind of take a break from that and to lean on other people, because.
[00:22:13] Speaker C: There are a lot more people around.
[00:22:15] Speaker B: Now for the holidays. There a lot of family that would be more than willing to help you. And I know that it's like Allison said, it's not easy to ask for that, but I do think it is, like a really great opportunity to actually take some of the load off the caregiver during the situation because there are so many other people around. And take the pressure off of yourself for it to be this perfect, special thing. Because just having family around is the whole point.
[00:22:44] Speaker D: Yeah, I'd love to see if what would happen if I pitched to my mom, if we just did a Thanksgiving dinner, you know, two weeks before Thanksgiving, but we all just get pizza, you know, see what happens now. I think the other recommendation that really stood out to me that you referenced as well is being specific in either asking for help or asking to help. And we referenced this back in season one when talking about caregiving help. One of the recommendations was if you could use support, don't just ask people to help out sometime, but say, are you free on Thursday afternoon for two hours while I go grocery shopping? And I think that that asking for specific help or asking to help in a specific way could be really impactful. I liked identifying key people to sort of have social shifts either before dinner or after dinner.
[00:23:42] Speaker B: Something that felt really relevant to me personally was were some of the tips about going to the holidays. Because I think as a younger person, this is a time of year where I interact with the older people in my family and actually get a sense of what aging actually looks like in my own personal bubble. And one that really stood out to me was the quizzing, which I didn't even think about, but I've definitely seen so many times and didn't really think much of it. And it's always with good intentions that people do that. But I can't imagine that that would be very stressful for somebody that is having trouble remembering things. And I thought Allison's suggestion of open ended questions was really great. It reminded me of the beautiful questions from the Arts on the Mind episode, Kind of allowing a space for older adults to reminisce and think more broadly. That makes a lot of sense to me and it's definitely something that I'm going to implement for the holidays this year. When I'm talking to the older people.
[00:24:50] Speaker D: In my family, I listened to that part with a certain sense of shame, recognizing how many times I had done that with older relatives in my family. And very well intentioned. Even if we were of an age where we were aware of their cognitive decline, thinking, oh, this is an opportunity to sort of rev up the cognition engine a little bit. And I can recall specific instances of saying, who is this person in your, you know, your wedding photo or something like that, and realizing it pinned more like, do you. Would you like to tell me about your wedding day or would you like to tell me about your marriage or something about. Or do you have any advice for a young married couple that where it's much more open ended? You know, I wish I had had a chance to do some of those again. But you know, I look forward to hearing about what, what approaches you. You learn as you go.
[00:25:46] Speaker B: Yeah. I thought that Allison did a great job of just giving a lot of examples. Like even beyond giving tips, really painting a picture, it really helped me understand a lot of what she was saying. Such as if you're in an airport and you usually let somebody go to the bathroom by themselves, you might want to rethink that. Or thinking about finding a place in the house where if a person gets overwhelmed, you can go to. I would imagine as a caregiver, you're so in a routine and a schedule with a person that going to a different place is first of all going to be really overwhelming. But second of all, it may be hard to think of new ways of doing things or to try out something different now that you're in a different environment. So I think really giving concrete examples and concrete tips like that is super helpful for people to understand them better.
[00:26:43] Speaker D: The last point that stood out to me was that in general, people will choose to be kind and patient if they are aware. And Allison referenced some of these cards that we had created in the past that just say the simple message of my loved one has memory issues. Please be patient. Just something that you can subtly hand to someone while you're engaging with them without drawing too much attention to the interaction. And it can really change for the whole foundation of the conversation. I think ultimately Allison is right that people will choose kindness when they know they are dealing with someone who needs help. And that goes for strangers in airports or rest stops. It goes for aunts and uncles and cousins and children. The main takeaway is seek kindness by asking for it. If people can verbalize the ways in which they need help and the ways in which others actions can lead to joy rather than stress and can open up opportunities for decompression instead of escalation or positive reminiscence instead of quizzing that, it's a great recipe for a holiday season that is centered on joy and gathering rather than stress and administrative planning.
[00:28:16] Speaker B: I think that's really true. I love that point as well.
[00:28:19] Speaker D: Well, with that, I wish you safe travels and a joyful Thanksgiving later on this week.
[00:28:26] Speaker B: You too.
Thanks for listening to this episode of the Age of Aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD Center.
[00:28:44] Speaker D: Contributors include myself and Jake Johnson, as well as Nicolette Calcovecchia, Dalia El Sayi, Marie Ngineri, Jason Karlowish, Emily Largen, Meg McCarthy, and Megan Sharp.
[00:28:58] Speaker B: More information on the stories you heard today can be found in our show Notes and on our website, pennmemorycenter or.
