Episode Transcript
Welcome back to Lewy Body and Mind Caregiving. I'm Krystal Jakosky. I'm delighted that you're here and, yeah. I encouraged you at the end of last time to do a little bit of self-care. So the question is, what self-care did I get to do today or this week? I cleaned out a storage area that has needed to be cleaned for a very long time, and I just didn't have the energy to do that. I had family in town and that family offered to help, so I was able to spend time with loved ones and clean and organize in the same breath. And that was like the biggest gift because it was a huge weight off of my shoulders and I could breathe deeper. So I'm very grateful for that. I love it.
I'm very appreciative. Huh? Yeah, very appreciative of that relationship. Oh, those family members, and relationships, is what I want to talk about this week. Yeah, I want to talk about the fact that things are going to shift. They're going to be different. They're going to change in ways that will be helpful and inspirational and disappointing in the same aspect.
When you become a caregiver for someone, in the beginning, you don't feel that much like a caregiver because, I don't, I didn't, let me correct that. I didn't feel like much of a caregiver because it was so gradual. It was so like, “Okay, well, this is a shift for now, and this is a shift for now. Okay, maybe this one…” Now kind of like the old saying that if you put a frog in cold water, it'll just hang out in the cold water. But if you put a little bit of heat to that water, the frog will just sit in the water until it boils to death.
So I was just sitting in the water and I was just enjoying that. And then all of a sudden it's like, this is a hot tub and now I'm a caregiver. Over time, I look back now and I see that I've been helping my mom for the last five years. It's 2023, and I've been helping her navigate her health since 2018. And I tell you, I can see how, and COVID absolutely it was in there as well and contributed to this a little bit, but I can tell you that I have pulled back from social stuff and from hanging out with friends a little bit because I just don't have the extra bandwidth or the time.
Time is one thing because you've got all of your other obligations on top of being a caregiver. But then, and there's only so much time in the day. But bandwidth is something completely different for me because I may have the time to sit on my couch and just read a book, but that doesn't mean I have bandwidth to spend time with friends and be social and have that “I'm here” kind of energy with everybody else. Bandwidth is my ability to do something outside of what's already on my agenda, on my schedule. There's this crazy thing, when you go through something really difficult, that's when you find who your true friends are.
As as someone who helps a lot of people as a nurturer, as a healer, so to speak, there are a lot of people that I call friends. But there are friends and there are acquaintance friends and then there's a deeper level of friends where they know more of your life. And then there are the deep friends that can see you at your worst and still love you and support you. And I have found, over this timeframe, this experience up till now, that some of the friends that I considered closer friends are actually distancing [themselves].
I believe they're distancing because when they ask me, “Hey, how are you doing?” I don't have as much to say because it's like, “Oh, I'm doing okay. I'm kind of tired.”
“How's your mom?”
They don't really want to know everything about how my mom is. They just know that that is one of the biggest parts of my life right now. And constantly listening to someone say, “Yeah, well, Mom's struggling and this is what's going on and this is where we're at and this is how it affects me.” They don't always want to hear that. And so they have started selectively choosing out because it's easier to choose out and avoid having that conversation of “How are you doing? You know, how are you really doing?”
So I'm finding that some people are choosing out. Some people are kind of fluttering around the peripheral and there are some new people choosing. I have found some new people who are going through similar things, united in similar experiences and challenges. I've found a few friends who are dealing with their own aging parents. How do they navigate that and how do they work with that weight and that challenge? I can be with them and we can say, “So how are your parents?”
“Okay, How's your mom?”
“Oh, okay.”
So now what would you like to do? Because we both got the blech out of the way. Now let's try to find a little bit of joy or a little bit of peace in the moment that we have together. Because life goes on, even though everything is a little bit different, even though it doesn't feel like it's necessarily going on and growing for your loved one, you yourself still need to be out there and do something.
I was listening… I was reading on this Facebook, Lewy Body Support Group and one of the, one of the posts was talking about “What is your greatest fear?” And most of the people that posted on there were caregivers who said, “My greatest fear is losing myself. My greatest fear is how I come out the other side of my loved ones disease” and other people posted on there and said, “Yeah, I've never been the same.I've lost my joy, I've lost my happiness, I lost a ton of friends. I don't know what to do and trying to find my life again. Now that theirs [loved one] has ended and I don't have that weight of caregiving has left me at a loss.”
I can see and I thoroughly understand how that happens, how losing yourself in the caregiving can happen. And then when are you, where, how? What was at the end? What are you left with? What do you do? How do you move forward? And that's why I continually say self-care, self-care, self-care, self-care, self-care, because you have to fuel into YOU. As long as you're doing some kind of self-care, then you're at least acknowledging that you have value, you have worth, and you're finding something that will bring you at least a little bit of joy and peace.
It's so difficult to find people that you can talk with because they don't fully understand what you're going through and it would really take an hour or two to even try to get across to them. What that is, how it feels, the constant mental stress of thinking about them, wondering if they're okay, wondering if they need help, wondering if the doctor's appointments coming up is going to be beneficial. When you ask them how they're feeling and how their digestion is it's not just, “Are you constipated or runny?” it lets you know if they need a different kind of food, if one of the medications is being a problem for them. You are constantly deciphering everything they say. It's not just, “How did you sleep last night, Mom?” You know that if she didn't sleep that all of her symptoms will be worse. You know that if she had dreams, what kind of dreams were they? Were they stress dreams? Okay, she's stressed out. What's going on? What is she worried about? What is she nervous about? Is there any way that I can support her and ease things? Your brain is constantly going on this problem that is a constant stressor. Even when you're not with them, you're thinking about them because you're concerned about them and you feel responsible for them.
So yeah, you may be working and you may be reading. And yet how many times when you read that book did you pause and think,
“I wonder how they're doing?”
“I wonder if they need anything?”
“Oh, yeah, I've got to take care of that drug or I've got to take care of that doctor's appointment.”
People don't understand the constant need to know and adjust and shift and the weight that comes from that. And it's impossible to explain it, and it's impossible to impart that weight and that stress. And yet it's there, always. Some of these new people that have come into my life, in my realm, understand it a little bit more. They are more aware and we can… it feels good to know that I can sit with somebody else who has that they understand me and I understand them and we don't have to talk if we don't want to. We can watch a movie, we can read a book, we can just hang out whatever works for us. And there's nothing else expected, nothing else. It's a gift to find those people.
Your friends that see you starting to shut down and pull back, they aren't aware of all of the things you're going through because they just can't know and they don't know what to do and they don't know what to say and they don't know how to support you and it just feels weird.
So things will shift.
I recently had a friend come up to me and say, “You don't call me anymore. You don't reach out for us to hang out and that's really upsetting to me.”
And I just looked at her. I, I was flabbergasted. But in the same aspect, there was this part of me, I was split in multiple parts. There was part of me that was angry because they know that I'm a caregiver for my mom. They know that I've got a lot of weight on my shoulders. So where's the compassion for that? And then there was this part of me that felt like I needed to apologize and soothe them and make things better and promise that I would make more of an effort to call, which would take away from my self-care bandwidth because now I have more of a responsibility to tend to that friendship when I really don't have much bandwidth to tend to any of my other friendships.
So why should one friendship be any more important than all of these other people? But you're standing here telling me that you should be so for now what do I do?
I stopped and I took a breath and I looked this friend in the eye. And I've been friends with them for years and years and years. And I said, “I don't have the bandwidth. I love you. I cherish our friendship and for this season in my life, when I am caring for my mom and trying to be okay for myself, if you want to hang out with me, you're probably going to have to be the one that calls. And to be honest, if you want to help me and support me in this challenge, that's probably the best thing you could do for me. Encourage me to go to tea and have a little self-care. Encourage me to go for a walk around one of the lakes, encourage us to spend time together and be willing to listen to the challenges that I'm facing.” And if that's not something that she can do, and I didn't say this part, if that's not something she can do, then personally, I don't think that that friendship is going to serve me at this time in this way.
I believe that people come into our lives for a reason, a season or a lifetime. A reason is, they're going to learn something from us or we're going to learn something from them. They are here for a purpose. Whatever that purpose is, whether it's you, them or together.
Then there's a season, and a season is a longer period of time. This might be a job, you know, it's high school. The kids from your childhood. A season is a longer period of time that somebody is in your life and you're in and out and you have fun and you laugh and joke and this is life and you affect each other during that season.
And then there's lifetime. And those are the people that you have forever and you just keep coming back. Even when you haven't spent any time together in a really long time, you still, when you do get together, it's like you were never apart. A lifetime, people that you know forever and you keep coming back.
Now I am in a season right now and this season, I am developing new friends for this season because things will need to change. I need to find the support that will give me the self-care and the boost that I need through this season of my mom's life. And at the end of this season, we'll see how many of those people for the season stay for a longer season. It could be that they're here for a reason. It may be a season in my lifetime, my mom's lifetime, but it's a reason for me. It's a reason to help me get through being a caregiver. And we may love each other and support each other in that kind of an arena. And then not talk again. Because the reason we came together was to support each other within the caregiving arena.
There's a reason people are there. There's a season and then there's a lifetime.
Now, I have no doubt that after this season of my mom's life that some of those friends that have kind of gone by the wayside may come back in because I will have more bandwidth to be more reciprocal in a friendship, in a relationship with them. I have no doubt that some of them, I will say “I just don't really need to go back to that.”It actually feels better not to.
Your relationships will change. They will shift. People will not understand what you're going through and why you can't be that positive, bubbly, energetic, outgoing person that really had a good time all the time. They may not understand why you're so exhausted, why can't you just take the weight of caregiving off your shoulders for a night and come out. It doesn't work that way.
There are people who don't understand and they won't understand until they have to go through it too. And then there are people who will understand and will support you and will be of an immense help through this challenge. It's okay that things will change. It's okay to let things go. It's okay to not put quite so much effort It is perfectly normal. It is really fine. And I encourage you to find the people who support you, the people who can encourage you, who can invite you out, who can say, “Hey, let's do a little self-care together.” I encourage you to find people that help acknowledge the challenge and you guys can find your way with light through what is in front of you.
Give yourself a break, give yourself some love, do a little self-care and come back for the next installment of Lewy Body and Mindful Caregiving.
