Episode Transcript
[00:00:10] Hello and welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, your host, and I'm glad that you're here. Thanks for joining today. I want to talk a little bit about the balance between being a caregiver and being a loved one for your loved one who has dementia, Lewy body, whatever it is that they are dealing with, or maybe you're dealing with and helping you understand and maybe work with help.
[00:00:36] Self care. We always start with self care. And what did I do this week? You know, I gave a spiritual talk at a church and I was their guest pastor for the day. And afterwards I went on a date day with my husband. So we went to lunch and then we went to a show. And it was lovely to just let the world fade away and for me to just embrace the moment and enjoy being together with my husband and, yeah, so that's what I did for self care, connected with my sweetheart.
[00:01:10] Um, moving on to the topic of today. This has come about for me. It's one of the things that I have struggled with off and on a lot because my mom lives 100ft out my back door in a family care give family care assisted dwelling unit. It's an ADU.
[00:01:30] It's 700 sqft. It's nice. And. And it's perfect size for her. And I built it, designed it with the intention of who she was and the fact that I knew that she would decline. I knew that she would be aging in that place and I wanted to make it so that she could be there as long as absolutely possible. So, um, so there's extra squishy carpet in the bedroom and thick pad as well. So if she falls out of bed, it's not going to be as painful or hurtful as if she would fall out of bed onto a hardwood floor. For example, the living room and kitchen is big enough, but it's also small enough that the way that things are arranged, she can do what they call couch surfing. She can reach from thing to thing to thing to give her stability. She does not want to use a walker. She doesn't want to use a cane. She has that insecurity and belief that if she's using a walker or a cane, that means she's old, she can't take care of herself.
[00:02:46] So she's fine couch surfing. Because, see, I can do it and I can live on my own and I'm still independent and I don't need the extra support from something else. So she goes from couch to end table to her dining room. Table to the kitchen counters, whatnot. So she's able to, as she has these dizzy spells or the hallucination, the crawlies that she calls them, intensify. She can still get from place to place if she needs to.
[00:03:20] As she is 100ft out my back door, it means that I can be out there every single day. I can be at her beck and call. I can be right there if there's a problem, if she's in pain in the middle of the night, she could call me and I could be right there.
[00:03:42] On the one hand, this is great because I am right here. I am present, and I am able to help out. On the other hand, it means that I am right here, which means she can call me anytime. Now, there are some people that deal with their loved ones in a home or a facility, whether it's their own home or a memory care facility that call relentlessly anyway.
[00:04:09] They may not realize that they continually call. The loved one just picks up the phone and constantly needs something.
[00:04:19] And I understand that this can be an unbelievably frustrating thing, having your loved one continually call and interrupt your day.
[00:04:29] The only advice I have in that instance is allowing some of those calls to go unanswered. It's okay. You're not neglecting your loved one.
[00:04:40] You're actually doing a little self care by taking care of you. And if there's really something that's a big problem, if she's living in a facility, they're going to call you. They're going to let you know that something is up. So, um, being right here with my mom, she knows when I'm at home, and she knows when I leave. She watches my car drive off. And sometimes she calls me and says, hey, where are you going? What are you doing today? And sometimes she just waits until I come back and touch base with her and she's like, so what did you do? I saw you leave. So I have this little. This little bird over my shoulder, watching my moves, watching what I'm doing. It's like a teenager. I have to sneak out of the house if I want to go somewhere and not let her know, which it really doesn't matter. She can watch that I'm leaving, it's okay. But sometimes I do feel a little bit like a kid being watched. And every now and then, some of her comments come off as, you're not spending enough time with me, you're not here often enough. She'll say to me, you're so busy. And this is a comment that she has used time and time and time and time again. And I know that it's because she's lonely and she wants me to be there and present with her.
[00:06:05] And yet, I also know that it is something she tells herself so that she doesn't latch on and take up a ton of my time because she wants to remind herself that I have other things to do.
[00:06:18] I work on my relationship with my mom all the time. I want to make sure that I'm giving her what she needs. I'm making sure that I meet her basic, everyday. Make sure she has food, make sure that she's got her meds set up, make sure that she is safe.
[00:06:39] I ask her how she's doing health wise so that I can help manage her medications and make sure that she's doing all right that way. In that way, I am absolutely a caregiver because I am caring for her well being. I am caring for her basic needs, shelter, food, clothing, safety, medications.
[00:07:02] I fill that caregiver role a lot. And that caregiver role can drain you. It can drain me and leave me just exhausted and frustrated in trying to understand what she needs, in trying to continually decipher everything that's really going on because she tells you some of everything, but you have to draw it out of her to get the full truth and really understand the whole situation.
[00:07:37] I know that as the caregiver, I need to fill that role, but my mom needs connection as her daughter as well.
[00:07:49] So I need to make sure that I fulfill the caregiver role and say, all right, I have done that. And then recognize when I'm shifting over to being her family member, her loved one, her daughter. So her daughter looks like hanging out and watching a movie together. Her daughter looks like sitting on the couch and chit chatting about whatever's on her mind, whatever she's thinking about. Who has she talked to lately? And let her give me the update on that being her daughter is helping her. She has these games on her computer and there are five a day that she needs to do in her mind. She has to get them done. And if she doesn't, then she doesn't get a check mark for the day. And at the end of the month, she wants a check mark on every single day, which is great because these are, are mahjong, solitaire, kind of games that make her brain function and work and process. So I really highly encourage that. But sometimes the games are just too hard and she tries them for four or five or six days and she just can't get them and so she'll ask me if I can help her. That is a daughter thing, a mother daughter together, hanging out, trying to play a game. Because I, too, am a gamer. And I have to recognize that I have to pull out of the caregiver and be that loved one, that daughter, so that, number one, I can have a connection with my mom so that I can be there, be loved, and give love on that level as a loved one. Because if I don't take off the caregiver hat and set it aside, then coming into it as the caregiver and then sliding into the loved one and not paying attention, I get a little drained and a little annoyed, like, okay, well, I know you want me to be here with as your loved one, but I just took care of caregiving things and I'm a little irritable. So I need to. I need to leave. I need to go. I need other. I have other things that I need to take care of. And yes, that falls into her you're so busy category. But I have to make time to be both. I have to make time to be a caregiver and I have to make time to be a daughter. Because, yes, the caregiver meets her needs, her physical needs, but the daughter is the one that meets her emotional needs.
[00:10:23] The daughter is the one that meets the touch, the connection, the mental feeling, those needs that can't be necessarily met as well by a caregiver role.
[00:10:43] There are the two now. As a daughter, I can go out there and be like, phew, I don't have to caregive at all. Today.
[00:10:52] I get to just go out and take a break, maybe hide out from the world for an hour and enjoy whether we're watching mash together or one of her other CSI or whatever they are shows or we're chit chatting, and often we'll actually watch a show and chit chat during the commercials. And then watch a show and then chitchat during the commercials.
[00:11:17] I know that she needs that part of it. There have been several times that I go out and I take care of the caregiving part of it. I make sure that her meds are taken care of. I change her bed, check in on all of her systems and see if there's anything that we need to adjust.
[00:11:35] I ask her if she needs any food because I'm going to the grocery store. Sometimes I can pop in really quick and I can deal with the caregiving thing and it doesn't matter. It's just a quick thing. But I don't have time to sit and stay as a loved one. So I have to make sure that I make that time later.
[00:11:54] I hope this makes sense to you. If your person is in a care facility, are you going there as a caregiver or as a loved one? Because they fill different roles. If you visit your parent or loved one at their home more frequently, how are you going in? What hat are you wearing? Because on the one hand, you think that the caregiver is meeting their needs, is taking care of things, and they are, but they're not taking care of all of the needs because the caregiver doesn't necessarily take care of that emotional reassurance, hey, I love you, and everything's okay. And I know that this is hard and rough, but we're getting through it together.
[00:12:41] What hat are you wearing, and how can you balance that out? The caregiver is draining. Maybe being a loved one isn't so draining. Maybe being the loved one actually fills your cup a little bit and you get to laugh and joke around with them. Maybe being the loved one is going out for dinner or going and getting a pedicure or going for a drive just because you want to see the colors and the baby calves that are showing up in the fields. The loved one is a different role, and it fills other needs that the caregiver doesn't necessarily do. And I know that that sounds. That might sound a little weird, um, splitting them out, but personally, it helps me a lot. And because it helps me, I'm sharing it with you because my hope is that it will also help you. And you go, oh, my gosh, this makes a lot of sense. And now I'm going to pay attention to which role I'm playing and how I can energy, energetically feed into that.
[00:13:41] My caregiver role is all mental and analytical. It's get in, take care of the issues, make sure that they're taken care of, and good to go. But that's only mental. I think I've told you guys that I believe that there are four bodies. There's our mental body, which is our mind, processing everything. There's our physical body that feels the world. There's our emotional body, which is how our. We, our emotions process all of the input that's coming in. And then there's our spiritual body, which is connected to our higher power.
[00:14:16] Your caregiver role largely feeds the intellectual aspect of things. It will also feed because it's intellectually processing through all of their symptoms and what's going on. It will be able to say oh, you've got these physical needs. And I'm going to help make sure that these physical needs are taken care of. But it's more clinical. It is not as touchy feely, lovey, emotional, physical, spiritual. So the two roles serve different meanings, different purposes. They help your loved one in different ways. They also drain you or fill you in different ways. So take a minute, step back, look at where you're at. Look at how you are helping your loved one, what you are working on, what you are giving to them.
[00:15:08] And see if paying attention to that hat, which one you're wearing, helps to shift the drainage a little bit. Helps to make you say, you know what? It's okay. I've got this. Not a big deal. I'm going to put this one aside and put this one on.
[00:15:27] I think that's everything I have to say.
[00:15:31] I hope you have a wonderful day. I hope that you take care of yourself. I hope you give yourself an extra hug. And I just take a pause and be in the moment. Give your loved one an extra hug. Because human touch is so very important for every human being.
[00:15:49] It really does help people thrive instead of decline. And I'll see you again next week on Lewy body and mindful caregiving. Until then, take care.
