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, but I took a little bit of a break and it was wonderful. It was really, really good. I did that part for self care because my mom was doing really well, and I did that part because my cohort had a little baby and we wanted to give her a little bit of time. So we are back, and this first episode is going to talk about my mom as a teenager. And it's, I think it's kind of fun, and I think it's a really great analogy for us to think about. But always, always, always, before we go into that, I want you to do self care. And what have I done for self care? Well, for me, I've been puzzling lately. I've been puzzling a ton. I normally don't puzzle in the summer, and yet this week I think I've done three or four of them. So that's something I do when I really need a break and I want to just zone out and meditate because puzzles are really something that I enjoy and gives me some peace of mind, lets everything calm down and I can just be in the next piece.
[00:01:25] Today I want to talk about my mom being a teenager.
[00:01:29] This is my new analogy, and it is unbelievably helpful and unbelievably illustrative for anybody that I'm talking to. My mom will meet somebody new and they will afterwards look at me and say, wow, your mom is so normal. I say, yeah, yeah, she is.
[00:01:51] But she's also not. She's very much not. My mom is 72 years old.
[00:01:58] My mom, if you think about a 13 year old, a 13 year old cannot make a doctor's appointment.
[00:02:10] They can't get themselves to and from the doctor's appointment. They may want to be social, but they're going to need a ride to get to and from. They kind of think they know after absolutely everything, but that kind of gets them in trouble a little bit.
[00:02:25] They can make food simple, easy stuff, but nothing super complex or overwhelming.
[00:02:35] If they go to the store, they're going to grab a bunch of kind of junk food and easy stuff, but not necessarily go for the healthier fruits and vegetables, that kind of thing. They're really going to go for more like chips and cheese and juices and favorites. In that realm.
[00:02:58] They can kind of shop like, if you said, here's $20, I want you to go get this and this, they could probably go do that if you drive them to the store kind of thing, they don't necessarily know their way around, so they might get lost, they might have a hard time getting from point a to point b. They may have a friend that can drive. And then you question their safety and you wonder if they're going to be okay and if they're going to come home on time or if there will be an issue.
[00:03:29] They probably have an allowance, some kind of income. Maybe they mollons or pet sit or whatever it is.
[00:03:41] Maybe they just have an allowance from doing chores around the house. But that means they have their own money and they get to spend their money however they want to spend their money. And sometimes they save and they do a great job and sometimes they just spend it because they can. And you try to nurture and guide them in where they need to go with that money, but that's not always the greatest thing. And sometimes weird things come into the house because they have their own money and they can buy whatever they want to buy.
[00:04:12] I think this is painting a pretty good picture of a teenager, but in the same aspect, it's very much my mom.
[00:04:21] My mom can absolutely, definitely go to the store if I take her and pick out her own food.
[00:04:30] But it's probably going to be more on the sugar side and she has diabetes than it will be on the protein and vegetable side of things. It's going to be more in the vein of cheese and carbs than it will be in the vein of something that's really hearty and going to stick with her for a while. So, um, she has her own money and that can be a challenge. And I've really, honestly actually taken over a portion of that. I've really started overseeing it. And she only gets so much, kind of like an allowance wherever she can spend this. But when that's gone now, what are you going to do? And you actually have to go to mom and say, meaning me, and say, hey, I need some more cash because I'm out. So I, you know, and, um, then we can talk about where she spent her money and I can look at what's going on because I do have her financial stuff in order. And, um, I can go, well, we, you know, you've spent a lot of it, lot of stuff on Amazon. Maybe.
[00:05:36] Maybe we'll hold off on refilling your, like, giving you your next week's allowance, um, your next chunk of change before we move on with a teenager. They are, they can be very emotional. One day they're fine and they think everything is great and they are the king of the world. And the next day, they might be a little insecure and struggling and needing your reassurance and your love and your guidance. Um, they might be a little bit clingy, and then they might be a little bit adamant that you leave them alone and make them, let them make their own choices. This is absolutely my mom.
[00:06:13] My mom gets anxious and nervous, and there are times when she desperately needs to cling to me and hold on, and then there are other times she's like, you told me to do that. I am going to do the exact opposite of that because I don't care. There are times when I catch her lying.
[00:06:33] She has severe pain in her wrist right now, and we found out that it's mild arthritis, but as a dementia patient, it is really blown much, much bigger.
[00:06:45] And she was given some very, very, very gentle move it side to side. That's all I want you to do. I want you to pull it this way a little bit, and then I want you to pull it that way a little bit.
[00:06:58] Just little tiny movements. And she, I'll ask her if she does them, and she goes, yes, I do them. And she gets a little defensive and stuff. The reality is she's not doing them. She doesn't want to do them.
[00:07:15] She says they hurt or makes other excuses, but she'll tell me initially that she's already done them.
[00:07:21] Her back was hurting and she had physical therapy that she could do for back. And I was like, mom, let's do the physical therapy. I've already done it. Have you really? Well, I don't want to lay on the bed in the middle of the day. Then I need to take a nap. But then when I walk in the door, she's napping a lot and I'm waking her up and I'll walk on the door and her eyes will barely open and I'll go, oh, did I wake you up? No. I've been awake as she's struggling to open her eyes.
[00:07:52] This is mom. My mom's a teenager now.
[00:07:56] I've already raised my kids.
[00:07:59] I have a 25 year old and a 26 year old. I have three grandkids. My kids are raising their own kids.
[00:08:08] I didn't want another kid. I didn't.
[00:08:13] I didn't.
[00:08:17] I really wasn't aware of what I was signing up for. Like, I was aware because I had taken the classes and I knew that this was going to be a big deal. I knew that mom would decline and that she would need increasingly more help. As time went on, I was aware of that. Like, on some levels, I was very much aware of what this would take. But this is one of those things. Being a caregiver is one of those things that you really don't know what you're signing up for until you're really in it, until you're really doing it. You can take all the classes in the world and say, yep, I'm educated. I'm good to go. I know what's going to happen. But really, until you are down in the thick of it and you are working through each little challenging thing and the emotional upset and the roller coaster that comes along with that, you don't know. You can say, yeah, I've totally got this. My kids have said, mom, when you get that age, we're going to take care of you. We've totally got this. And I'm like, you don't know what you're signing up for, and I don't want you to sign up for that. That's not where I want to be.
[00:09:28] I want to choose out of this world on my own terms, in my own way.
[00:09:33] They don't know there is this love and there's this beautiful intention of, I intend to take care of you. I intend to help out. I know that it'll be difficult. I know that there will be challenges. I know that it will be hard in certain areas. But until you've actually walked through it, until you've actually experienced it, you do not know beyond a shadow of a doubt what you are going to be going through and how challenging and trying this experience will be.
[00:10:09] We are caring for children.
[00:10:15] I say that because as the disease progresses, they become more and more childlike and young.
[00:10:27] They become more afraid, they become less verbal, they become less able to take care of themselves. Feeding, getting dressed, taking a shower.
[00:10:45] A teenager, you might have to remind them about personal hygiene, brushing their teeth, taking a shower, being clean in general, using deodorant and whatnot.
[00:11:00] As they progress, you'll be reminding them, did you brush your teeth today?
[00:11:07] Forget flossing. That's going to be really hard to get them to do.
[00:11:15] Did you take a shower?
[00:11:17] Those clothes seem. I think those are the same. You don't say it, but I think those are the same clothes you wore yesterday. So, hey, let's pick out a new outfit today. I have the blue one or the green one. Which one do you want to wear?
[00:11:33] Because looking at their closet is overwhelming and they shut down and they can't do the whole thing, which is like a very young toddler, two, three, four years old. Do you want this one or this one? It's not a choice of the whole array of options.
[00:11:56] When we look at it this way, I think that it makes it not easier. I don't want to say it makes it easier, but it makes it clearer for me when I'm frustrated with something, oh, yeah, she's like a teenager right now. And as the disease progresses, then I can say, oh, she's moved from a teenager in this route to she's more like a nine year old.
[00:12:23] She's more like an eight year old.
[00:12:26] As she declines, I can compare that to where my kids were or where my nieces and nephews are and say, oh, yeah, okay, that's where we're at.
[00:12:36] She's not going to travel by herself because I don't trust her getting from point a to point b, and I'm not going to put that on a flight attendant. There's just no way that's really going to happen.
[00:12:48] So I hope that it helps you, too, to be able to look at it and say, oh, yeah, that's where we're at when we are in it. Sometimes it's hard to see the slow, gradual decline. It's hard to say, wait, is that, is that different than it was a month ago or is that still kind of the same? I'm not quite sure where she's at. If I look at it in this manner and I say, yeah, she, a month ago she was able to walk around by herself and she was more steady, but now she's, she needs a lot more support. She needs somebody with her all the time, I think is what she's buying from Amazon. You know, like, what's going on here and where are we at? And have we declined in that realm? My husband says to me, Crystal, she's declined. And I say, really? I can't, I can't tell. And he says, that's because you've been so deep in it. But absolutely, from March to now, it's different and there's more to it. So give yourself a break.
[00:13:59] Give yourself some love and compassion. Recognizing that they are reverting back into childhood, they are losing a little bit of the adultness and the autonomy and moving more into the younger realms of life.
[00:14:19] Coming at it in that way, you can't tell a nine year old, go make cookies.
[00:14:30] They are not going to know how to step, how to do the multi step process, getting the ingredients out. You've got the eggs and the butter and the sugar and you got to mix that together. And then you add the vanilla, and then you add this. They're not going to be able to follow all of those steps.
[00:14:50] They need somebody with them to help them cook a multi step process. Make a ham and cheese sandwich. They might not remember all of the steps because that is the age range that they have regressed to. And now you need to help and step up. So I hope that helps. As always, please remember to give yourself self care. Know that you are not alone. There are so many people out here also doing the same thing, struggling, trying to navigate the challenge that is here. There are resources, there is support, there is help. And I'm rooting for you. Take care. Until next time. We'll see you again on Louis body and mindful care.
