Episode Transcript
[00:00:10] Welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, your host, and thanks for joining me. Today I'm going to talk about finding a companion. And before I do that, I want to talk about self care and what I did for self care this week. I spent a little time with a women's group, and I went for a hike to a beautiful place with a girlfriend. And that's just lovely. That's. It was a way to remind myself that I am so small in this universe and there's so much more out there.
[00:00:43] Grateful for those connections and those times.
[00:00:47] As far as my topic today, finding a companion, this kind of falls underneath self care. This falls underneath the need to find support for yourself so that you can continue doing your thing and living your life and still know that your loved one is taken care of.
[00:01:09] There comes a point that you cannot do it all yourself.
[00:01:14] There comes a point where your loved one just needs a little bit more care than what you are actually able to give.
[00:01:23] And so you have to find somebody. Now, my mom is not in that space physically, largely, yet my mom is still largely able to take care of herself. She. She can still do her own laundry, pick out her own clothes, make her bed. Hygiene is still there. She can make generic, you know, very easy generic kind of foods. I talked about it a few weeks ago when I said I have a teenager and all the things that my mom can do. My mom is kind of capable on a lot of levels, and I recognize that. That is, I'm.
[00:02:04] I'm in the early stages and I'm grateful for all that she can do, and yet there's a lot that she can't do. And my mom gets very anxious and very emotional and she struggles.
[00:02:14] Part of Lewy body is, is the challenge of regulating their emotions and anxiety just happens to be one of my mom's anxiety and suspicion of others.
[00:02:29] The suspicion is a new one, and it seems to be growing, and that's also very common with lewy body. Now, I can't be with my mom 24/7 most of us are not able to be with our loved ones 24/7 that's just not where we can be. And I've had some new developments in life where I have to be away from my home a little bit more overnight once a week. And I know that my mom is a little anxious about that because anxiety is one of her issues.
[00:03:03] I had to figure out how I was going to support my mom so that I could support myself.
[00:03:12] This meant that I needed to find somebody who could be a friend and come by once a week, twice a week, and just say hi and maybe bake with her or do a puzzle with her, or maybe she wants to run an errand here or there. Like, what.
[00:03:32] What does mom want to do?
[00:03:35] And that was, that's, that's. That's different. And I think that that's a hurdle that a lot of people have to jump over. Most of the time, our loved ones don't want somebody new in their house. They don't trust them. They don't think that they need help. Um, and it's. It's in the way that you present it to your loved one. Well, this person's coming in so that they can clean. Well, I don't need a cleaner because I'm capable of cleaning. Even though they haven't picked up a dust rag in years. I can clean. Um, well, they could vacuum your floors. I don't need somebody to vacuum my floors. I can do that. They haven't vacuumed in a long time, but they're offended. It's like their pride.
[00:04:18] So I think we all have to kind of find out what works for if we're keeping our loved ones in their own space or in our space, and we need that extra help, that it's all in how we present it to them so that they can more easily accept that this is what's going on. Now, I've been very open with my mom about Louis body. We have had very candid conversations about where this disease is going and what she will end up dealing with so that she.
[00:04:57] She can be prepared if she wants to, so that she can be a part of it if she wants to. And I know and recognize that she is not going to remember the majority of those conversations, but I'm also not going to hide any of it from her. And I'm. When we do talk about it, I soften it. So I'm not harsh in saying, well, you're just going to get belligerent, and you're going to get this and that and the other. With me, it's, well, you know, sometimes people get forgetful, and sometimes, well, all the time, people get forgetful. But sometimes people are less forgetful, and sometimes people get suspicious and worried, and sometimes there's just a myriad of all these things that could happen, and we don't know what'll happen, because it's so unique and different that you're going to be different than anybody else, and we just kind of have to deal with it. And she'll say, well, if. If I get mean with you, then I want to figure out how we can. Let me go, because I don't want to be mean to you. I'm grateful for everything you've done. So let's, um.
[00:05:59] Let's talk about that.
[00:06:01] Or I don't want to be incontinent, or I don't want somebody to have to help shower me. Okay, well, that doesn't happen to everybody, but okay, if you need that, then what do you want to do? And how would you like to deal with that? Like, you know, so we're, we're pretty open. And I do that intentionally because she's asking those questions. Now, some people can't handle those answers and can't handle those conversations at all. And I understand and respect that.
[00:06:30] With my mom, I knew that I was going to go on my girls trip last weekend and that I would need a little support.
[00:06:39] I am planning a trip with my husband so that we can reconnect because we haven't been away together from the pressure cooker. And I know that we need to remove ourselves so that we can rekindle our relationship a little bit more.
[00:06:57] If I'm going to be gone, somebody needs to check in on mom, and I can't have it be a stranger. It needs to be somebody that she's met a few times that she already knows and trusts so that it's a much easier transition, so that if I'm not around, she can call them and say, hey, crystal's not here. But this weird thing happened. Can you. Can you come over or. My tooth hurts and I need to go to the doctor. I need somebody that can do that. Now, some places have what are called volunteer visitors through palliative care or through the senior centers, that kind of thing. They will have people who volunteer and they come and they visit like once a month, and they try to match your person, your loved one, with somebody that would be a really good companion to hang out with. Like, if. If your mom likes to. My mom, for example, likes to bake and she likes to do puzzles and she likes to, you know, I just tell them she likes, she likes to watch movies and she loves Mash and whatnot. And so then they try to find somebody who also likes to do puzzles and who might like to bake, and maybe these two would be good together because they have something in common that's very simple. On the dementia patients, rage.
[00:08:17] So I got a couple of referrals and had a couple people come in and they'd spend some time with us together with me and mom. And then I'd excuse myself, and I'd say, oh, I've got a. I've got a run.
[00:08:37] I'll talk to you. Meaning to the person that was visiting mom a little bit later. You can just let yourself out. And, mom, are you good? If I head out of. And mom would say, sure, but that would give my mom some one on one time with them and me some time with them to see how. How it went. And then after that person left and I came back to moms, I'd say, hey, what did you think of that person? Did you like them? What do you think about maybe baking with them, or would you like to have them come over another time and see how things go? Now, these people that come in are people who have been around the aging population have generally dealt with dementia in some way, shape, or form. They know to watch for the shakiness and whatnot. Um, I talk to them about everything about my mom so that they are completely aware before they come and visit some of them, I have to pay for that first initial visit and say, hey, you know, let's just see if it works out now for my mom. I. The way that I put it to my mom is I said, you know, mom, you keep telling me I should go on a vacation with my husband. And so we want to go, but I want to make sure you're taken care of. So I want to see if I can get somebody that you really like, and they can be like, your friend, they can be your buddy, and this person could just come and hang out with you, or you could go run errands, or maybe if you want to bake with them, you could try that. What do you think about that? Now, the first time I brought it up to her was months ago, and she was uncertain. She was like, I don't need somebody.
[00:10:09] But then a couple weeks later, when I brought it up again, she was like, yeah, let's try that. Let's see if we can find somebody that'll come say hi.
[00:10:20] It took a couple people, and now we have two people that my mom is like, yeah, I'd kind of like to bake with her. Or one lady came over and she was like, would you like to go get a burger?
[00:10:34] And mom was like, yeah, let's go get a burger together.
[00:10:39] By finding somebody that can come by, somebody that I trust, somebody that is well versed in any of the things that my mom might end up dealing with, that gives me more support. It means that I am building my safety net. It means that as my mom declines, I will be able to pull them in and say, hey, look, I need a break. Can you come by three times this week? Because I'm going to slip out and do this or this. Hey, mom's a little anxious this week. Would you mind coming and just being an additional support? I'm still here, but I feel like she just needs people around.
[00:11:24] I'm breathing a little bit easier because I know that I can call on somebody else. I know that I can take a break and remove myself and it'll be okay because my mom has someone she can trust, and trust is a big deal with Lewy body. They just don't trust a lot of people.
[00:11:45] A girlfriend of mine, her mom and dad were declining. They were in their own home. They were not really cooking for themselves or doing well that way. And it took a while for her to be able to introduce somebody that could come in and make simple meals that they could just eat fresh out of the fridge or that they could pop in the microwave for a minute or two. Well, then they learned that their parents couldn't do the microwave anymore. So this person would simply do cold meals that the parents could grab out of the fridge and she would do little household chores just while she was there meant, you know. Yeah. Hey, while I'm chit chatting with you, do you mind if I da da da dust over here or can I vacuum the floor for you? Because I really love to clean and it's just one of the things I like to do. And, um, they became friends, like, the person that they were able to bring in, the mom really became friends with her and trusted her and allowed her to do more things.
[00:12:45] I was really reluctant in the beginning to bring somebody in. I was like, no, I've got this. I don't need that help. I don't need that extra support. And yet, when I stopped putting those barriers up and started acknowledging, yeah, this would be nice, I can breathe easier, I can breathe deeper.
[00:13:06] I am less reluctant to give myself a break and add a little more self care because I have somebody that I can trust and that my mom can trust.
[00:13:19] I encourage you, if you're just feeling like it's too much, if you're feeling like you need a break, and even before then, maybe it's a good thing to look and see if you have volunteer visitors that you don't have to pay.
[00:13:35] I actually just saw a flyer the other day, and they were pre med students that were looking for ways to get clinical hours and they were finding ways to do that by serving the elderly community. And I don't remember where this was located at, but there are a programs out there that you can help find people to come in and be with your loved one. Maybe you have a friend that just likes to do that kind of thing. Maybe you talk with a bunch of people and somebody knows somebody who knows somebody that can get you hooked up. Go to your senior center and find out what programs they have and how they can help support you in your needs.
[00:14:17] Because there are people and there are ways to do this and it will help you out tremendously. I had to find it for my mom.
[00:14:27] I had to do that because I couldn't be her end all, be all on every plane.
[00:14:37] And in order to let myself be the best me I can be for her, less irritable, less stressed, less put upon. Letting somebody else be her friend as well just really lightens my load that much. So look for a companion and maybe look for one before you need one, because it'll make that transition easier when they already have a companion and they start needing a little more extra support. More extra and make a lot of sense. Guess I'm rambling now, so I think I'll let you go. Um, companions. It feeds into self care. It feeds into support for you in what you're doing. And they will be happier too. They're socializing and they get to do something different. They get to talk to somebody else other than just you, which is a beautiful thing, and just opens up possibilities. So self care, self care, love on yourself and then come back next time for the next installment of Lewy body and mindful caregiving. Until then, take care.
