Episode Transcript
[00:00:10] Welcome back to Louis Body and mindful caregiving. I'm Crystal Chakowski, your host, and thank you for joining me today. In this episode, I'm going to talk to you about a large family gathering that we had, why we had it, how I prepared, what I did right, maybe what I could have done better, and how my mom fared throughout the entire experience. So it's going to be a wonderful episode, and I hope there are some gems and nuggets that you can take from it.
[00:00:45] We always start with self care, and this time for self care, I allowed myself to take breaks. I set boundaries. That is the big one.
[00:00:56] I set some boundaries, and those boundaries were definitely a gift to myself. So let's move on to the meat of the matter. So one year ago, I asked my siblings if they would all get together.
[00:01:15] We were looking for it for the entire year. We wanted to get together as an opportunity to spend time with mom. And at the time, we thought that her diagnosis was going to give us anywhere from three to eight years.
[00:01:32] But that diagnosis was one year ago.
[00:01:36] And throughout this year and watching her decline, it became steadily more apparent that I don't think she has another year with us. And so getting together was a huge, important thing to all of us.
[00:02:01] At the time, mom was better off than she is now. At the time, we thought that it would be an easy thing and not that big of a deal, that she would be with it and able to really enjoy everybody and having her grandkids around and whatnot. And so she was more mobile and she had more energy. She was baking, and she was physically able to function at a much higher level than she is right now. So there were some major changes in that.
[00:02:34] As you heard from my last podcast from last week about mom's prognosis or her diagnosis and her decline, like giving you an update on her decline, there's a dramatic change in this last year.
[00:02:50] So embracing this opportunity to be with her, to connect with her and have her with her whole brood around her, was a big opportunity and a huge gift. That meant we had 27 people in one space for four days.
[00:03:14] 27 people.
[00:03:17] I was aware that this would drain my mom dramatically.
[00:03:22] I want to explain something to you called a window of tolerance. Wo t for short. Window of tolerance. A window of tolerance is the window in which we are able to navigate normal life. We have this window where you can bounce around and deal with the ups and downs and deal with the outside world that's there. And if there's too much stimulation and too much going on, then you can move into a hyper awareness spot where hyper stimulation, and you can be anxious, you can be angry, you can be frustrated, you can be super happy, and just kind of all over the place.
[00:04:05] It's kind of this manic space, the hypo space, when you go out of the window of tolerance is one of depression or shutdown, general overwhelm, and inability to function whatsoever.
[00:04:23] So there's everything in between that, right? And many people have a wide range of a window of tolerance. Some people can go from morning, as soon as they're out of the bed, all the way until nighttime, and they can be with people all the time, and they never get out of that window of tolerance because it really fuels them. There are other people who maybe you're more of an introvert and you can handle the outside world for so long before you need to come in. Recluses have a much shorter window of tolerance.
[00:04:51] When my mom went to Switzerland with us in August, September, in July, August of 23, she had about a five hour window of tolerance. We had about 5 hours where we could go out and go sightseeing and take in the world before she was completely exhausted and could not function anymore and was kind of stumbling, and we were using a wheelchair to get her around most of the places that we went. So my mom's window of tolerance in July, August when we went, was four to 5 hours.
[00:05:33] My mom's window of tolerance now is more like an hour and a half where she can have somebody in her house and for an hour and a half, like me going into her house, and I am her comfort. I was there, and I was sewing some curtains for a friend. And at the hour and a half mark, she started to get agitated and kind of annoyed, and she didn't know what to do and was kind of trying to figure out how to function. And I could tell she really wanted her space back, that I was impeding on her security. In that moment, she had come over to my house, and we were wrapping presents, and an hour and a half was all she could handle, and she needed to go home. She just couldn't handle that. So recognizing this concept of the window of tolerance and going into a 27 people, four hour day thing, I knew that we were going to have a very exhausted, crashed mom, which meant that I needed to prepare in such a way that I could be available for her, available to support her and not worry about anybody else.
[00:06:50] So the question became, how do I ensure that everyone has a good time and that mom is adequately taken care of? How will I get her to take naps and personal time to recoup and not be completely wiped out every single day or when we get home? And not only that, but how will I take care of myself so that I can continue to adequately take care of my mom while there are so many people around? Like, what am I going to make happen so that this will be okay? Now? We went to an inn that had plenty of space, plenty of bedrooms, and had a full kitchen for us to use for the entire group.
[00:07:38] I was very familiar with this place, which meant that I was able to assign rooms to absolutely everybody that came. And I got to pick which room my mom was going to be in. And I chose this room that was right off of the main living room because this room had the bed area. This room had a little couch sitting area, and then the bathroom. And we took up her computer. We took up her tv and her roku. We took up her living room blanket that she likes to curl up within the living room and keeps her warm. We took up the blanket that she likes to use on her own bed. We took up her own pillow.
[00:08:17] We took everything that we possibly could to turn this little room into something similar to our own home.
[00:08:24] Something that meant that she would be able to do her own routine life, her day to day life, as much as possible and still be really close.
[00:08:36] It was beautiful.
[00:08:38] This place didn't have this room that I put her in, did not have stairs. She didn't have to go outside and then come inside. She was right in with everybody else that was present.
[00:08:52] Outside of her room was a love seat couch. And this love seat couch faced a fireplace. And this turned out to be absolutely perfect because my mom would come out of her room, and she would sit on that couch, and then she had this beautiful opportunity to have people sit with her throughout the day. Somebody else would come and sit with her, and she was able to connect with them, and they would either talk, or they might just sit on their phones together, or people would sit around and sing and play the guitar. It was a beautiful opportunity for her to just sit and rest and listen or connect. She could hear the kids laughing and playing, but she wasn't necessarily having to interact with people. She was also just a few steps from the dining room. So it was very cozy, it was very tight. So it was easy for her to go from one space to another space.
[00:09:56] And there was also another room where the kids could play, and they could be loud if they wanted to. They could play games, they could do crafts. They could do puzzles, whatnot. So it was a beautiful setup. It meant that if my mom wanted to go into her room to rest, that she could. If she wanted to go into her room and watch tv, then she could.
[00:10:18] With so many people, I knew that not only did I have to think about my mom and think about where she was at and where she would likely be at, I also needed to take care of myself. So, like I mentioned earlier, in my self care, I set up boundaries. I brought up a bunch of food and I said, hey, guys, I'm giving you the food. You guys cook it, you guys clean it. And I'm just going to make sure that my priority is mom.
[00:10:49] Now, how did my mom do? That's one of the questions. How did my mom do the first day? She really wanted to be present for everything. She wanted to be in the same room and watching and actively a part of that.
[00:11:08] By about 05:00 that day, she was beyond exhausted.
[00:11:13] She was so tired. She was so emotional. So we ate dinner. Then I encouraged her to take a shower and go to bed.
[00:11:26] And since this was an unfamiliar place to her, every night, I helped make sure that she had what she needs. She took her meds and was there to help her crawl into bed and just pull the covers over her to make sure she was okay. And I tell you that that first night, she crawled in and she just cried for a minute because she was so exhausted, so very exhausted. And I knew that was just too much. So how do I fix this? So I left her room, shut off the light, made sure that there were nightlights around so that she was comfortable. And then I went into the kitchen and I asked all of my siblings to help me out the next day. And I said, hey, guys, this is what needs to happen.
[00:12:15] Mom's exhausted. A full day is too much. But she has fomo.
[00:12:21] She really doesn't want to miss out on seeing everybody and everything. So what I would love is if tomorrow after lunch, everyone just kind of takes a nap or disappears for a little while, and we can encourage mom to lay down and take a nap, too. It was beautiful because that next morning, we got up and had breakfast, and mom went to her little spot on the couch and had her rotating cast of characters. And at one point, people were like, I'm going into town. And mom said, well, I want to go, too, because I want to go to this one shop and get this one specific thing. So they were talking about taking mom, and I was able to steer her and say, hey, mom, if everyone's going to be gone. This might be a really good time to take a nap.
[00:13:17] And she looked sad. But then my siblings caught on, and they were like, oh, we could totally go to that place for you, and we will send you pictures and you can tell us which ones you want, and everything's going to be great. And she was like, oh, okay. My mom took a two hour nap. My mom took a two hour nap that day. And then when she got up, she was good for the rest of the afternoon through dinner and able to take a shower and go to bed. Now, that doesn't mean that my mom was actively participating. Often she was simply sitting on the couch. She might be playing on her thing on her phone while somebody was sitting next to her and playing on their phone. She may have been sitting there enjoying people singing and playing guitar. She may have just been enjoying the fireplace that was right in front of her, keeping her nice and toasty warm.
[00:14:11] She wasn't actively participating necessarily, and yet she wasn't quite as exhausted that second day as she was the first day. And the third day, we were able to do the same thing. And the fourth day, we were able to do the same thing. It was really good to get her to take that extra nap, and I was so grateful that everybody else jumped in. Yeah, we're going to help it out. We're going to help her out. We're going to make sure that everything is okay and that she's okay. And they could see how tired she was. It was obvious how hard it was for her to get off the couch or how hard it was for her to move from one area to the next area because she was physically unable.
[00:14:53] Now, on day four ish, much of the group left, and another small group arrived, and we stayed at the inn for two nights before we decided that we would come down to our house here at the farm.
[00:15:11] You could see the relief in my mom. You could see she was so grateful to be in her own space. And my mom took four days to recover.
[00:15:24] We would go get her for lunch or go get her for dinner, call her up and say, hey, do you want to come eat with us? She would come eat with us, and then we would take her straight home because she just needed more rest. It was so draining for her. And yet, when you talk to her about it, she's so grateful that she got to see everybody, and she loved every minute of connecting with every person.
[00:15:52] She loved listening to the laughter and the singing and the joy that was there. She loved seeing the little kids all of the younger grandkids and how they got along so well. There wasn't a single fight. My family is so amazing. There was not a single fight, which blows me away. I was in awe watching how everyone got along and connected. It was so beautiful, and I was so grateful for that opportunity.
[00:16:30] Once we came back down from that inn and we were here at the house, I noticed that my mom was less emotional. Every night when I tucked her into bed, she cried. She was so tired.
[00:16:49] Part of it was tired.
[00:16:52] Part of it was the understanding that she just didn't have the stamina to be able to connect with everyone.
[00:16:58] Part of it was that she hurt, and she didn't want everyone to know that she was in pain.
[00:17:04] There was so much to it. So much to it. But once we got down here, she was less emotional. Now, whether she was less emotional because she was back in her own space, and that just gave her so much peace and relief.
[00:17:21] Or maybe she was simply so exhausted that her emotions were drained and not online for use, I don't know.
[00:17:31] But I do know that I have no regrets in encouraging people to come in and do this gathering for her.
[00:17:46] No regrets in her being tired or anything else that happened.
[00:17:53] I am thrilled that we gave that to her because she is thrilled and grateful. It was such a gift. We even took a huge family picture with the big group, and then we took another picture with these other ones, and we're going to photoshop them all together so that my mom can have this beautiful picture of everyone that was able to make it there.
[00:18:16] It's a huge gift. It was an opportunity that we chose to grab onto.
[00:18:23] The questions I ask are, what did I do right? What did I miss? Or what did I need to pay more attention to? And then, how can I do better?
[00:18:35] When you are dealing with your loved one and a group gathering or going outside of their norm, what can you plan for ahead of time? And then afterwards, ask yourself these same three questions. What did I do right? How did I take care of my loved one? And how can I give myself a little pat on the back?
[00:18:58] What did I miss? What should I have done? Just a little bit better? And then, how did I do right?
[00:19:09] How did I do right? What did I miss? How can I do better? Okay, so what did I do right? First off, from personal experience, my boundaries, I was literally able to just focus on my mom and her needs. I was also able to let go when she was talking with other people and had people on her couch because I knew that she was okay and she was taken care of, and so that would give myself a break. So the boundaries that I set around myself and allowing myself to have a break, I did right, because it meant that I was really able to navigate everything that came on. I was really proud of that mom's room placement, I did that so. Right. It was absolutely perfect.
[00:19:54] The way that she was able to be right there next to the couch, the way that she had everything that she needed. She could do her regular routine without a problem. She had her own pillow, which meant that she was feeling even more at ease. She wasn't sleeping on some funky whatever.
[00:20:13] What else did I do right?
[00:20:20] I was very aware because of my boundaries, I was able to be aware of how she was doing. And anytime there was a problem, I was able to jump in and help in whatever interaction there was. But I also let other people step in. Like, my husband would say, hey, can I get your mom a plate so that you can just breathe and maybe eat and not have to worry about anything? And that was absolutely fantastic. So I did let him or other people jump in and help me out.
[00:20:52] Just knowing that they were with her and knowing that she was okay was a big deal. I only needed to jump in when there was a problem. And what else did I do right? I kept my siblings apprised on her progression and the challenges that she was having. So if she was super tired, I explained to them, and I would say, hey, maybe we can do this tomorrow, or maybe we can do that tomorrow, or, hey, let's make sure that we get her a nap kind of thing. And can somebody make sure that they're walking with her when she needs to go to the bathroom and whatnot, just to give her added stability kind of thing. So I did good in keeping everybody updated and aware. And I want to say I did really good because I prepared long in advance. I did not leave anything to the last minute.
[00:21:38] I made sure that I started thinking about best case scenarios and worst case scenarios long before this event came up. And I made sure that I thought about what she would need and how I could help her and what the siblings and their kids would need and how I could help them, like, how I can support everybody else and support myself in this entire thing. So I didn't leave anything to the last minute, which meant that when the time came, there weren't any, oh, shoot, I forgot about this, or I forgot about that. There were no last minute freak outs. It was all, yeah, it's fine. And we were in a place where if we needed anything. We just go to the store. Didn't matter. We just go to the store and everything's fine.
[00:22:26] What did I miss?
[00:22:31] Feel like when I think of this question, it might sound prideful, but in this instance, I am so attuned to my mom and her needs, and I planned so far in advance that I don't feel like I really, truly missed anything. Like there was anything that I should have paid more attention to.
[00:22:59] The one thing when I look back on this time with everyone that I lament a little bit is that it's more of a personal note because I was so focused and attuned to mom's needs and where she was at and whether people were with her and what was going on.
[00:23:25] I don't feel like I allowed myself to connect with my siblings or my nieces and nephews, my siblings, as much as I would have liked to. I don't feel like I was as light hearted as I wish that I was.
[00:23:43] And I know that part of that is simply being a caretaker, that it is a mantle that you carry, and so it makes it a little bit more challenging. And yet, that's the one thing that I kind of lament, that I didn't play cards with them more, that I wasn't more in the group, that I was kind of more on the outskirts.
[00:24:12] And yet, at the same time, when I recognize that this is what I wish, that this is what I missed out on, I'm also so unbelievably grateful because I got to witness the connections, I got to witness the joy.
[00:24:36] I got to be in awe of my siblings and my siblings.
[00:24:46] I got to see what a rare gift this closeness is that they all have and they got to experience. There wasn't a single fight, and it was such a gift. So I did puzzles, and I would do a puzzle in the big room where everybody else was sitting so that I could still be a part of it without being in it kind of thing.
[00:25:13] Overall, I'm proud of how I navigated the whole experience. I don't really have any regrets or upset other than wishing that I had played cards with them and been a little happier.
[00:25:32] So that's really good to feel that way. How can I do better? And here again, I have nothing.
[00:25:48] I had already played out all of the possible solutions, all of the possible issues that would come up in my head. I had prepared so much for it. I gave myself downtime.
[00:26:04] The foreplanning went a really long way.
[00:26:10] We all wanted to give this time to her.
[00:26:15] Additionally, it was a stark reminder for all of us, she's not well.
[00:26:24] Like my sister said on the phone, she sounds like a healthy, coherent person. You wouldn't know that she's really not well. But then you see her in person and you see how this was, and it's amazing.
[00:26:40] The decline and the challenges.
[00:26:45] My siblings, everyone got to see that.
[00:26:52] They got to see the decline from the last time that they were here or the last time they saw her to now.
[00:26:59] So it was a stark reality and reminder. It was heartbreaking. And in the same aspect, you're just so grateful that you do get that time and that opportunity to be there, to be present and to give that gift to her.
[00:27:15] It truly was good for my mom, it was truly good for them, and it was really, really good for me.
[00:27:26] I'm so glad that we gathered. If I'm honest, I'm actually sad that it's over because it was such a beautiful opportunity and moment.
[00:27:42] Dementia sucks.
[00:27:48] You know your person best.
[00:27:51] In the beginning, they might be okay with family gatherings, and as they decline, those gatherings might be more and more and more difficult.
[00:28:02] More and more challenging.
[00:28:05] The planning for it, it's not just in the food, it's not just in the activities, but the planning for your loved one will get you a really long way.
[00:28:22] Making sure that you take their needs and their comforts into consideration is huge.
[00:28:28] Making sure that you, as their main caregiver, has the support that you need is huge.
[00:28:37] Ensuring that you have boundaries. Ensuring that you have self care and downtime just as much as your loved one does. Bake it in.
[00:28:49] Let somebody else do the planning of the other stuff if you need to. You plan for you and your loved one. How can you best make it through? If this happens, how will you react? If that happens, how you react. What can you do to help yourself and your loved one enjoy this as much as possible without being too, too much.
[00:29:19] We may have been close to the too, too much for my mom as her caregiver. We may have been hitting the ceiling, and yet, I know that she wouldn't have wanted it any other way.
[00:29:35] We could have come home a day earlier and that might have helped.
[00:29:43] But in her coming to her own space and being able to rest today, she's doing good.
[00:29:56] She's a little needy, which is just fine.
[00:30:01] She's doing really good and she's so grateful. And when people ask her how it was, she just goes on and she lights up about how great the whole experience was and how much she loved being there.
[00:30:15] It's beautiful to be able to do that. It's beautiful to watch her. It's beautiful to know that as her kids, my siblings and I were able to give that joy, that light, that gift to her. Right now, you can do it, too.
[00:30:39] If that's what your loved one can handle, find a way to make it work.
[00:30:46] If they can handle it.
[00:30:49] Thanks for listening and I hope you come back next week for my next topic on Lewy body and mindful care getting. Until then, do some self care.
