Episode Transcript
[00:00:00] Foreign hello and welcome back to Lewy Body and Mindful Caregiving. I'm Krystal Jakowski and I'm glad that you're here. This is, you know, the week before the week of Christmas and things are moving really fast. And so I wanted to touch on the holidays today and how the holidays are different before I dive into that. We always dive into self care. So what did I personally do for self care? I've been really increasingly more tired lately. I'm not really sleeping well, so as you might be able to tell. And so I have allowed myself naps, daily naps. In fact, my nap yesterday was an hour long and I never take an hour. I always sleep for like 10, 20 minutes. If I sleep for longer than that, you know that I'm pretty exhausted. So that was a big deal. Slept for an entire hour yesterday, so that was good. And today I'm going to go play pickleball because that'll make me happy too. So self care, giving myself a boost. That's fantastic.
[00:01:19] Holidays with a loved one that has a dementia diagnosis, this is huge. This is big. And it's challenge, it's different. You know, some of us have our holiday traditions that we do every year.
[00:01:38] Sometimes we gather together with friends, we might go caroling you, whatever your holiday traditions are, sometimes those are you easily maintained with a loved one that has dementia. And sometimes these are not so easily maintained with your loved one with dementia. It could be that your loved one is now extremely challenged by large groups and that large groups are triggering and upsetting for them. So instead of doing a large family gathering, you now have to find a way to do something a little bit more intimate. Or perhaps you need to find somebody that can come and sit with your loved one so that you can go join in the festivities.
[00:02:33] We have to make these adjustments. We have to make these changes because on the one hand, we want to honor them and their needs, their emotions, their fears, their struggles, their new challenges and limitations that are there. And on the other hand, we also need to love and honor ourselves.
[00:02:52] Do you love going to those parties and you want to be out there and. And joining in whatever is going on? How can you make it so that you can still do that? Can you have somebody else sit with your loved one? Is your loved one in. In a place that is taking care of them and it's okay? It already frees you up, loosens the reins so that you can go and enjoy that? What can you do with your loved one's room to feel the spirit without Being overwhelmed by the spirit. For my mom, we have a small Christmas tree that we put up in her house every year.
[00:03:34] It's simple. It's only like a little three foot thing that sits on this ottoman chest that she has.
[00:03:43] It's enough. It's just enough to let her feel the holidays. My mom also loves to watch movies. There are specific movies that she's like, oh, we've got to watch the Christma Chronicles and we need to watch Elf and we need to watch the Pearl Express and we need to. And if she gets to watch those, then she feels like it's the Christmas season even though she's not out and about and experiencing the stores and the chaos that's there. When I talked to her yesterday, I, I asked her about that and she said, oh, on the one hand, I feel like I should be out there, but that's scary. I don't want to be with all those people. So she was relieved that she didn't have to shop and instead we just went over and watched a movie at my place.
[00:04:28] We curled up and we watched the first Christmas Chronicles. It got her out of her house. She was feeling a little bit depressed and melancholy. So getting her out of her house, out of her surroundings and giving her something different, even though we weren't chit chatting together, we were sitting right next to each other and laughing and giggling and you can just feel that presence that helped bring her spirits up boon a little bit so that she wasn't as down. And when I took her home, she was like, thank you. That was so nice. I feel so much better.
[00:05:03] We have to find ways that work, ways that help us celebrate and help them celebrate.
[00:05:13] Now my mom is going to be with my sister for Christmas because my sister is going to host her and I asked for help and this is the help that I'm receiving.
[00:05:25] So traditionally, for the people that are in my realm for Christmas, on Christmas Eve, everybody gets to open one package and it's always a pair of pajamas. And so I went shopping and I bought pajamas for the people that will be here. My mom knew about the pajamas and the next day she said to me, where are my pajamas? I need some pajamas in my brain. I was like, you're not going to be with me. You're not opening it on Christmas Eve. You don't need pajamas.
[00:06:00] But to my mom, it was, you're not including me in the celebration.
[00:06:07] I want the gift too. I want the love and joy that you're spreading to other people to come to me.
[00:06:16] So I Took her out and we went and bought her a pair of pajamas. She has worn those pajamas every night for the last three nights. And yesterday she goes, you gotta feel these. They're so soft. And she's pulling her shirt out so that I can feel it. They are very, very soft pajamas. And she's just thrilled that she has a spare. So she got to join in on my tradition without actually doing the tradition, if. If that makes sense. Because she'll be with my sister. We're finding those little ways. She's not going to be here the week of Christmas, so watching the movie White Christmas, we need to do that before I go and take her to. To my sister's house, because my mom will want to watch that.
[00:07:05] So we'll kind of shift some of those traditions forward a little bit so she can have her traditions with me, because that's fixated in her mind. She wants to know that that's happening. She wants to know that's what's going on. She is focused on what am I going to miss out on?
[00:07:25] And as she focuses on what she'll miss out on, she gets depressed and frustrated and disappointed and anxious about it. So I'm navigating, what can I do? And how can I make this so that she doesn't feel that upset, that disappointment? Now my sister is going to have her own traditions, and when I take mom down there, we're going to make gingerbread houses together and just have a good time. My mom is super shaky. She might have a hard time with the gingerbread houses. So maybe the rest of us just make our gingerbread houses crazy and zany instead of perfect lines to make her feel better. In this tradition that is going on, we find ways to adapt.
[00:08:13] For some of us, we've lost our loved ones. I hold a death cafe grief group here once a month, and this last one that we had, a lot of people were talking about how this is the first Christmas without a loved one.
[00:08:32] And they were having a very difficult time because there's loss and there's sadness. And with somebody with dementia, with a loved one that is losing their memory and their faculties, we are constantly grieving the loss of somebody that is still here.
[00:08:51] Or maybe you've lost your loved one and you're literally grieving the loss of their presence here on this plane.
[00:09:01] And to you, I say I love you, and I send support and healing. Take a moment, rest, close your eyes, think of that person and invite them into your heart. You will feel them.
[00:09:21] It may bring you a little bit of peace, knowing that they're still around, that they love you and that they are constantly present.
[00:09:34] Even though you can't see them with your physical eyes, you can still feel them and their energy around.
[00:09:44] It'll never be the same.
[00:09:47] It'll never be the same without them around.
[00:09:53] It'll be a new normal and you can find ways to love and honor them.
[00:09:59] Perhaps during this time of year, you bring out pictures of them and you display them in certain places so that you can bring them in on the festivities and remember the joy and love that they brought into your home. Perhaps you cook their favorite foods.
[00:10:19] Perhaps you play or sing their favorite songs. Maybe you go to a concert that you know that they particularly loved.
[00:10:27] There are ways that we can honor and bring those loved ones into our hearts and our homes during these holidays.
[00:10:35] There are ways that we can make it a little bit easier on the loved ones that are struggling and losing parts of themselves here on this plane.
[00:10:45] And there are ways that you yourself can give yourself a little bit more compassion and healing and support. I have called in a couple of other people to help support me during this time and moving forward so that if I want to go somewhere and do something, if mom just needs an extra somebody coming over and saying hi for an hour just so that she doesn't feel alone, then I can call him and say, hey, do you mind, like, I don't know, just coming and saying hi with mom so we find ways to support ourselves. I really sincerely pray that during this time when it can be so crazy and so frenetic outside and we're dealing with all of our emotions and all of our logic and everything else inside that you take moments to feed and fuel yourself, give yourself the gift of respite and love at the same time that you work to find ways that it'll be easier for your loved one. Because as you make it easier for your loved one, it also makes it easier on yourself knowing that they are more at peace because of the efforts that you have made so that they're not overwhelmed, so that they don't feel scared and anxious and worried because of all of the things that are going on, that you can make it more catered to them and their needs and their joy.
[00:12:12] Because it's the holidays, I'm going to give myself a couple of weeks off. So I hope that you take care of yourself, add extra bits of self care, an extra bath, an extra hot cocoa, a new book, a comfy blanket, whatever it is that really helps you feel more soothed and loved and then I will see you in January. Thank you so much for being on this journey with me. Thank you for being present and holding yourselves in love, for being a present caretaker for your loved one, for being that person that they really need that nobody else can really be for them.
[00:12:54] You are a gift. You are amazing. You are beautiful. Thank you for being you. Thank you for being here and have a wonderful holiday season. Take care.
[00:13:09] It.
