Episode Transcript
[00:00:10] Hi. Welcome to Louis body and mindful caregiving. This episode is a personal episode and I needed to give you a really quick header.
[00:00:23] I record these episodes in batches. I'll do two, three, sometimes four at a time when I have time and when it works out for me, and then I am able to release it over the next couple of weeks. This one is a personal update. I recorded this about a month ago, and since then, I had already been releasing a bunch of other things.
[00:00:48] I relistened to this episode. I was feeling like I didn't want to release it to you because it's a very emotional episode for me and it's very raw. But then I decided that I needed to release it and I needed to give it to you guys because lewy body dementia in general is a roller coaster. It's really difficult. It's a real challenge. And so I want you guys to see that sometimes it's really hard. And even I am in the depths of challenge, really struggling to get through life. And then there are times when you're just fine, and I'm fine right now because I'm doing self care and I'm really working on me. And things have changed and improved since that episode.
[00:01:37] So instead of hiding it in the archives and holding it back, I decided I'm actually going to let you guys see where I was.
[00:01:47] Now. Remember, this is four weeks ago compared to now. So you will get to see the vast difference in how life changes and the weighty depths and the. You know what? I'm okay. I've got this. So without further ado, I give you the next installment of Louie body and mindful caregiving. Take care. Hello and welcome back to Louie Body and mindful caregiving. I'm Crystal Jaikowski, your host, and thanks for coming back. I always start with self care and I've been trying to do a lot of self care.
[00:02:21] I've been playing pickleball and my husband signed us up for ballroom dance classes. And I drink tea and I have been watching some funny movies. And yeah, I've been working at in this episode, I really want to tell you just where I'm at and talk about the challenges of this caregiving thing. I went into being my mom's caregiver fairly eyes wide open. I did a ton of research.
[00:02:56] As soon as I suspected that something was really wrong, I went to the books and I went to the Internet and I looked up the savvy caregiving course and went through that course. And I went through that course twice because I really wanted to make sure that I had all the information that I needed. And I knew that I would get different stuff each time that I went through it.
[00:03:20] Light bulbs would go off each time. And one time my brother, the second time, my brother and his wife and two of his kids took it as well. And I found that very comforting and helpful because it meant that they understood, they knew what I would be going through as well and they would be able to support it meant that if I needed to call them into town so they could help me out, I would feel more at peace with them doing that because they had the course and because they were in alignment with me or whatever, I don't know. But episode, I gave you guys an update on where my mom is at, and I recorded that episode a week and a half before it went out, almost two weeks before it went out. And so it has been about three weeks since I recorded that episode. And things have changed dramatically. They have really shifted to the point where she's constantly in pain and she's having a hard time sleeping, and she's been having a hard time sleeping for the last two months. And I know that this is supposed to be about me, and it's going to be about me. I just have to tell you that over the last two months, every day, every morning, it's a check in. How are you doing? How did you sleep? What do we need to do to adjust? And then it's been me touching bases with doctors saying, hey, this didn't work. What should we do now?
[00:04:49] We try it out for three or four days to see if maybe it just takes more than one night. And after three days and it doesn't work, then I end up emailing the doctor and through the patient portal, and it might take a couple of days to get back, and then you have a weekend and whatnot. And so this has been a long, drawn out saga, and her mood has steadily declined to the point where now she admits that she's depressed and she's very much completely withdrawing. She doesn't necessarily want to come watch movies. And she had me lift up any pots and pans that were low so that she didn't have to bend over and bring down the glasses so she didn't have to reach gets. She just doesn't even want to get off the couch. I took her for a pedicure and she was really disappointed that I wanted to run to Walmart really quick, too. She didn't want to walk through Walmart, so she's steadily doing this. She's steadily declining. And it's been amazing to watch the speed and depth of the decline. And they tell you that it'll go fast. They tell you that when it starts to really go that they'll decline super fast and you'll go, oh, my gosh, what happened here?
[00:06:04] And intellectually, I was ready for that. But emotionally, I have really been struggling for the last couple of months. And actually, it's been a little bit longer than that. When I think about it, I've noticed I've stopped wearing jewelry. I very rarely ever put a necklace or my earrings on. My hair is often not as clean as it could be, stopped wearing lipstick and like my own personal, make myself feel better. And I recognized that even though I'm doing all of the things, even though I'm going to my talk, doc, even though I'm being active, even though I did the research and worked to understand what I would be going through, you're still just not fully prepared for that.
[00:06:54] And I am still struggling with the concept of being depressed, the concept of being really tired and exhausted. There are times when I just want to sit on the couch. I just don't want to function. And yet I know that I can't do that because if I do that, then I'll just get even more sad and more frustrated.
[00:07:15] So I get up and I go play pickleball because I know that I'm going to laugh when I go play pickleball. And I'm going to have a good time because my goal, my intention is literally to have a good time and be that person that people will want to play with. I want to encourage all of those newbies who are insecure and nervous about playing with other people. I want them to love it so that they keep playing it.
[00:07:41] So I enjoy that. I enjoy dancing because I enjoy watching my husband's eyes light up when he gets the step and he feels confident and it's just amazing in that moment. But personally, I'm struggling with all of the things that I know and all of the tools that I have.
[00:07:59] I'm still struggling.
[00:08:03] I do seek out the good, I do seek out the positive, and yet I'm still struggling. If I'm struggling and I'm having a hard time, you're going to have a hard time, too. That's just the way it is. It is not a breeze. It is not something that you can just say, yeah, I did that, and move on.
[00:08:23] And you have to understand that there will come a point where it'll just be a lot. It's really frustrating because when you are in the depths, when you are in the trenches, and somebody asks, how can I help? What can I do?
[00:08:40] Before this point, I had things that I could tell people they could do. Call mom.
[00:08:46] Call her and spend time with her, because just talking to you will buoy her spirits. And if she's a little bit more up, it makes things easier on me.
[00:08:56] Call me and check in on me. See how I'm doing. Ask me what's going on.
[00:09:04] I don't want people to ask me anymore, because if they do, inevitably they're asking me about mom. And if they're asking me about mom, then I have to talk about how frustrating and upsetting it is, how difficult things are, how she's constantly in pain. And that breaks my heart because I feel like I haven't been able to be successful in having the doctors help and get her the right medications so that she can sleep, so that she can have some rest, so that she cannot be in pain.
[00:09:38] There's nothing I can do to make the dizziness and the weakness go away. My hands are. There's nothing I can do. There's nothing the doctors can do. And so your heart breaks, watching your loved one struggle this way.
[00:09:54] There have been a couple of times that I have been in this space of, have I done enough? If I had done something more, then would things be better? If I had been able to get the doctors to respond sooner, if I had had this, if I've had that, I've played the if game.
[00:10:09] And the problem with the if game is that that's not reality. Reality is what you have done, and so you have to sit in a space of what have I done?
[00:10:23] Remembering, reminding yourself that you've put a lot of effort into loving and understanding and supporting. You have put a lot of effort into being that liaison with the doctors.
[00:10:39] If it wasn't for my efforts, my mom would have been gone a long time ago because she wouldn't have gone to the doctor to get that random pain checked out that turned out to be a kidney stone, or she wouldn't have had the chest pains checked out, or she wouldn't have worried about the swelling and just said, yeah, well, I noticed that I'm swelling. It just is what it is and let it go instead of getting it treated and taken care of.
[00:11:11] The simple fact that I have been here and helped her has improved her quality of life longer and ensured that she survived longer.
[00:11:25] And this was an inevitable outcome.
[00:11:29] This is an inevitable outcome for every person who has lewy body or a terminal disease, they are going to decline to the point where you are now wondering, what are you doing next? Now, in just the last three weeks, we have now moved to putting my mom on palliative care. I will do an episode on the difference between palliative and hospice, but basically, hospice is actively dying and palliative is somewhere between when you've stopped treating everything and now you're actively passing.
[00:12:09] That's where my mom's at.
[00:12:12] And I'm hoping that the palliative team can make it a little bit easier on me because I can say, hey, guys, she's still not sleeping. She hasn't slept in three nights. We need to do something and that they'll be able to help me out immediately instead of waiting for two or three more days for the doctor to respond through the patient portal. If she's in pain, I can say, guys, we need to do something about the pain, and they will be able to help me much faster, much sooner. And yet, putting her on palliative care in and of itself brought up an amazing amount of emotion that I could not put words to.
[00:12:55] I was unable to describe.
[00:12:58] All I knew was that it zapped my energy that I had felt like a failure, that I had somehow missed something in taking care of her, even though logically I knew that palliative was the next step. I have been talking about palliative to my family and siblings for the last several months, saying, there's going to come a time, and I don't know when that is, I don't know how soon that is, but I know that there will come a time that we will put bomb on palliative. And so logically, I knew this, but emotionally, it was a completely different story.
[00:13:48] My siblings are wonderful. My siblings have been very, very supportive, and I am beyond grateful for all of them, all of their love, all of their understanding, all of their patience.
[00:14:03] I know that my siblings are a little bit frustrated because they don't know how to help me and there's not anything they can do to help me because they live out of state and they're already doing what I've asked them to do. They're already calling mom, which has been a benefit on both sides because it means that the sibling gets that time with mom, they get to connect with her a little bit, and it helps my mom because she gets to be the information hub, and she'll say to me, hey, Crystal, I talked to Eric today, and this is what's going on in his life, lets her feel very important. And it's beautiful, and it helps me because it does lift her a little bit. It does make things just a little bit better because she feels loved by her kids. They are giving her that additional love that I don't have the bandwidth for all of them.
[00:15:02] But we're down to the point where I need to be here.
[00:15:13] I'm the one that she most trusts. I'm the one that she will actually admit that things are going wrong, too.
[00:15:20] I am the power of attorney with her doctors, and I am able to advocate on her behalf, and she needs that advocacy.
[00:15:31] So how do you help someone long distance when they're in the trenches?
[00:15:44] Now, as a life coach, I've told people think about it ahead of time and have answers for people so that when they want to help, you can tell them what to do to help. And the truth of the matter is that you can't.
[00:16:06] They can keep calling mom.
[00:16:08] They can check in with me.
[00:16:11] They can talk about update things with me, because, sure, I want them to talk. I want them to call me, but I don't want to talk about mom. I want to talk about life and the things that are going on out there so that I can be reminded that something else goes on other than just this difficult zone that I'm in.
[00:16:40] My husband has been fabulous, and I've been very grateful for him because he sees it and he's like, hey, honey, can I draw you a bath?
[00:16:50] Hey, would you like to go dancing with me so that we can just kind of get out of the house and shake off the weightiness that's here?
[00:16:58] Hey, I would really love to have some really good food for dinner. Do you want to cook together because we enjoy cooking together, or you want to go play pickleball? He's getting me out of the house, and that is something that I have requested of him. I let him know that, being down, I just want to sit on the couch. And I know that if I'm out with people, that I will be reminded that there is joy out there and it will lift my spirits, even if it's just for the time that we're out.
[00:17:24] And so he is making an effort to do that.
[00:17:28] I've had a couple of very dear friends and a couple of new friends ask me how they can help and what they can do, and I don't have an answer for them because I'm like, I don't know. I'm in the trenches, but I've realized that let's go out for ICE cream and french fries.
[00:17:51] Let's go on a drive. Let's just go on a drive to hang out and be together for a little while.
[00:18:01] Let's watch a movie together, or let's do a puzzle together and be okay with it. If I'm just emotional, there are things that people can do, and they may go against what you think you want because you may want to sit on the couch. You may just want to drain that battery on your phone and check out for a while because your mind is constantly running with what your loved one needs and how to support them.
[00:18:40] And yet, you might almost also remember that friendship and community connection is super important to you and it feels really good.
[00:18:53] You might remember that there are other activities that would bring you a little bit of joy.
[00:18:58] Maybe it's a poker game. Maybe it's going to see live theater. Maybe it's working in the wood shop or some other creative outlet.
[00:19:09] Invite someone to do that with you.
[00:19:13] Let people know that that's what they can do. Make time to hang out.
[00:19:18] You have the ability to let people know and then accept them and take them up on the offer when somebody says, hey, you told me to do this, so when are we going go? Don't make excuses not to know that it is them reaching out and pulling you out of the trenches for just a little while before you have to go back into them.
[00:19:46] I honestly thought I'd be fine.
[00:19:49] I honestly thought that because I read up and studied and educated myself, that I prepared myself intellectually, that I would be okay and that I would be like, I got this and I can move through this and that I would be able to work with the emotional side.
[00:20:14] I tell you, it's harder than I expected it to be. It is so much harder than I expected it to be.
[00:20:25] I sit with the logical side because I need to be with the logical side. I need to remind myself that I have worked hard, that I have done a really good job, that I have kicked butt at being that liaison.
[00:20:45] And yet that emotional side is still right here. And it's so close and it's double sided. It's absolutely double sided. Because on the one, like, I can say, I did so good being an advocate for my mom and I gave her more time, and that makes me emotional just thinking about the fact that I gave her more time.
[00:21:06] And then I'm also emotional that her time is coming to an end. It's like, no matter what, both gratitude and sadness are right there together, that grief is right there together all the time.
[00:21:18] So I go to my talk doc and I work through it, and I'm like, this is where I'm at. I'm struggling, and let's talk about it and let's be okay. I am applying all of the things that I know that I can apply.
[00:21:31] There will come a time where you will apply all of the things that you know and can apply so that you can be better and you will still feel like it's just not quite there and that you are still struggling, and that is okay.
[00:21:46] It is okay to not be okay. It is okay to struggle and be down and be all over the place. It is okay to have both of the feels, all of the feels at the same time.
[00:22:01] I encourage you to find that self care that works.
[00:22:06] I encourage you to open up and seek out something different to remind you that while this life is coming to an end, yours will still go on and you need to be semi okay.
[00:22:33] You cannot fully lose yourself in this person as they pass, because then what kind of life are you living? And you know that that's not the kind of life that they would want for you. You know that they love you and they care for you and that if their mind was all there, they would be so sad that this had affected you in such a deep, deep way.
[00:23:00] Even for me, I wanted to make sure that I would still know me after my mom passed. And yet, here I am. She's going into palliative, and I'm having existential crises, and I'm struggling with myself and where I want to go with my business and what do I want to do in life and what does it all mean and why are we working so hard?
[00:23:32] I know that I will get through this.
[00:23:36] And I know that because so many other people have gone through this, I know that you will make it through this. I know that it will be a challenge. I know it might be difficult, and yet I know that you will make it.
[00:23:50] Question is, what do you want to be on the other side?
[00:23:54] How do you want to be on the other side?
[00:23:58] I don't want to be lost. And I don't want to have regrets.
[00:24:03] And so far, when I look back, I can say I have no regrets.
[00:24:09] I have done everything in my power to take care of her and take care of myself at the same time.
[00:24:20] That's the wish I have for you.
[00:24:23] The wish I have for you is that you are able to pause and acknowledge all of the efforts that you have made. Acknowledge all of the things that you do, all of the ways that you love and support your loved one.
[00:24:38] Write them down, make a list, and then I want you to pause and write down all of the things that you do to take care of you as well, all of the things that help you out. And if you're not in the depths where I'm at right now and you're still a little bit more above that, I encourage you to really look at the things that help you manage your energy because those are the things that you can ask other people to help encourage you to do as well. Going for a walk, painting, petting a dog, those things that will help buoy you up.
[00:25:21] So what have you done for your loved one? What have you done for yourself? And what can you ask friends to help you with later? Because it's not going to be necessarily taking care of them. It's definitely going to be taking care of you. You may need some meals. Just, I have no energy to cook and I don't have anyone else to help me. So if you don't mind bringing in a meal here and there, that would be unbelievably fantastic. And thank you for your support.
[00:25:52] It's a journey, and this is a marathon, not a sprint. It's going to take a while, so give it a while.
[00:26:03] Give it that time and that space and that respect. Knowing that it will be hard, that even though you plan and prepare and study and do everything you can to be ready, you're still going to get knocked sideways.
[00:26:26] You're still going to be overwhelmed on occasion. You're still going to struggle. And that's okay in those moments. Go ahead and give yourself a break. And after you've given yourself a break, say, okay, now what? Now what am I going to do? How am I going to change this and how am I going to put myself in a better state of mind? The emotion will still be there. The emotion is not going to go away. That is emotion. But you can also say, I see you sadness, I see you despair, I see you grief. I see every bit of what you are, and I acknowledge that you're there. And yet, I'm still going to live my life. I'm still going to function. I'm still going to go and do things. I'm going to play pickleball and I'm not going to stand on the court just crying. I'm going to play pickleball and I'm going to put my everything into that moment because it is a beautiful moment.
[00:27:16] I'm going to go dancing and I'm going to let the world fall away. Because going dancing, because I get to be with my partner, enjoying this beautiful moment of life.
[00:27:30] Take care of yourself.
[00:27:32] Keep learning. Keep giving yourself a break. Keep being patient and compassionate and understanding, knowing that this is a disease, not your loved one. The disease is what's causing all of these symptoms and all of these challenges that are going on. And your loved one is just as frustrated. Your loved one is just as challenged as you are. And that's okay.
[00:27:59] Give yourself a hug.
[00:28:03] Take a nice, deep breath. Take a nap, whatever it is that helps Buoyans support you. Play a game. Find somebody to play a game with. That's a good one.
[00:28:13] And come back for every other installment of Louis body and mindful caregiving.
[00:28:19] Take care.
