Episode Transcript
[00:00:10] Hello and welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, and I'm glad that you're here today. I want to talk about the uniqueness of every single person's journey on this horrible ride that we end up going through.
[00:00:27] We always start with self care. And today my self care is I've spent more time in the pottery barn, which is great because I let the world go and I just settle in with the clay and I get to just create this, that or the other. It's fantastic and I love it. So that was my self care has been my self care, a lot of pottery.
[00:00:55] I spend a little bit of time here and there on support group, on Facebook, there are tons of support groups, and I highly encourage that you get into one or two of them.
[00:01:12] For me, I don't post very often. In fact, rarely do I post.
[00:01:19] Instead, what I often do is read what's going on.
[00:01:24] I read what other people are dealing with.
[00:01:28] In some of them, I'm able to say, okay, this is how I personally would deal with that situation.
[00:01:34] In other ones, I'm like, oh, my gosh, what do people suggest that they do in that situation? Because I wouldn't know. And then I just dive into all of the comments to understand it.
[00:01:45] It is. It's a boon for me because there's these, there are these moments where I am relieved that I'm not dealing with the stuff that some of these people are dealing with. And then there are moments that I am heartbroken and can really connect because I'm there and I get it and I see it. And so, and then there are other times that I'm like, I wonder if I'm going to end up being in that spot and at least I know what to do when it comes up. So I'm loving this group. But of late, there have been a few comments and posts that have spurred this particular topic. Every.
[00:02:33] Every journey is unique.
[00:02:37] Nobody knows exactly what you and your loved one are going through.
[00:02:43] Nobody else can make the decisions that you're making. Nobody else has the ability, the knowledge, the connection to know what is right for you and what is right for your loved one.
[00:02:59] And I wish that everyone knew this to the core of their being. And even I trip up on this sometimes. Even I, every now and then, I'm like, oh, I don't want to tell anybody about that one because I don't want people to think that I'm a horrible person for saying, feeling, thinking that thing that I just thought or I'm dealing with.
[00:03:26] Last week, I talked about medications, and I talked about embracing the medications, and I talked about Narcan and how that is a medication that can help if somebody's overdosed. And some people may not think that I'm a very good daughter.
[00:03:45] Doesn't matter. It's not their journey. They don't know what I'm going through. They don't know my abilities, my strengths, my weaknesses. They don't know anything about me other than the fact that I am so stinking open everywhere else.
[00:04:00] They don't know.
[00:04:02] And what I put out to you guys is a strong person. But I tell you, I cry, I struggle. I have a really hard time just like everyone else. It is not easy sailing. Just because I'm able to put this out here and share with you does not mean that off camera. I'm not having my own challenges as well.
[00:04:25] One person put their dad in memory care, and somebody got angry with them, saying, how can you do that to your loved one? They just want to be with you.
[00:04:38] Okay. But if you were dealing with the anger and the outbursts and the violence, and you needed to be safe, then might. Maybe you would be in the same position. You don't know the old adage. You don't know what someone's life is like until you've walked a mile in their shoes.
[00:04:58] We just don't know.
[00:05:00] The choices and decisions are yours to make.
[00:05:08] It breaks my heart when I talk with a friend, a client, a stranger, and they tell me about everything that they are going through and all of the challenges that their loved one is dealing with.
[00:05:23] And then they tell me about how they can't take time off and they can't take care of themselves because other people are judging them.
[00:05:33] Other people have said that this is the way it needs to be. Other people.
[00:05:40] One person was like, I can't put my mom on this specific medication because somebody else said it was horrible. And I was like, well, my mom's been on that medication, and it worked. So what's right for you? What's right for your parent, your loved one?
[00:05:59] You are different. You are unique.
[00:06:02] Don't let someone else tell you otherwise.
[00:06:06] When it comes to loving a loved one, they don't know the outside world has no relation, no concept of what your history is, of the dances that you have danced, of the experiences that you have had together.
[00:06:31] If putting someone in a home is the best thing for you and your loved one, then that's what you need to do. It's entirely possible that your loved one will get better care in a home than what you're able to give. Especially if you're burned out and struggling, especially if you're already spread too thin and it's really just difficult to do.
[00:07:02] Yes, it's sad. Yes, it's heartbreaking. No, we don't really want to do that. And yet it could be what's in the best interest of everyone involved.
[00:07:13] Is it difficult?
[00:07:15] Hell yeah. Is it scary?
[00:07:19] Yeah.
[00:07:24] If it's the best thing for you and your family and that's what you do. If you happen to be able to keep them at home, that's what you do.
[00:07:34] If you end up having to quit your job but you're still able to manage, great. Congratulations. That's fantastic. And I'm so excited for you. Don't let anybody else make you feel bad or guilty for being able to do that, because their situation is different.
[00:07:54] If you do in home care, if you choose one med over another, if you choose to stop feeding them through a feeding tube because they just can't anymore, that is you and your loved one's decision. Hopefully you have talked with them about what they want and what their directives are before they get to that place so that, you know, hey, they don't want to be artificially kept alive, whether that's by a feeding tube or an iv or any other way.
[00:08:28] This is what they want.
[00:08:31] And then you can stand strong knowing that you did what your loved one wanted, not what the rest of the world thinks you need to do, or some judgmental ninny over there.
[00:08:46] This is your experience. This is your loved one's experience.
[00:08:53] What's right for you is right for you.
[00:09:05] My temper flares when I read the stories of people who are picking on other people because of the choices they made.
[00:09:15] When it comes time and I have to make those difficult decisions, it will be difficult for me to not be worried about what other people think. It will be difficult for me to say, this is right, and I have to stand on that truth.
[00:09:38] My mom has high blood pressure. It's a new development.
[00:09:43] And her doctor said, we need to treat this. And I said, we're not going to treat this.
[00:09:56] We're not going to treat this.
[00:09:59] And if my mom passes from a heart attack or something else because she has high blood pressure, then that's okay. Because we are at that point where she's declining again. She's more forgetful.
[00:10:18] She doesn't want to be. She doesn't want 24 hours care. We've talked about her directives. Now my mom doesn't know that she has high blood pressure and that we're not treating it. She just.
[00:10:32] She just doesn't know. And that's okay. She doesn't need to know because she would stress and she would worry. So what's best for me and my mom is for me to just manage this on her behalf.
[00:10:47] And anybody can add their voice and be cranky with me for what I'm doing. And yet, in the same aspect, I know I don't need to prolong this. My mom doesn't want to prolong this. My mom has told me several times that she wishes she would just go to sleep and not wake up.
[00:11:06] Why would I continue prolonging that?
[00:11:10] Why would I do everything I can to keep her on this earth? Why would I add more artificial life sustaining measures?
[00:11:22] Let her go.
[00:11:24] But that's my choice, and your choice might be something completely different.
[00:11:31] And that's okay.
[00:11:33] Do what's right for you. Do what's right for your loved one and hold firm.
[00:11:40] Knowing that you are doing the best that you can with what you have, with the support system that you have around you, and with the knowledge that you have, if you haven't already and you're early on this journey, I highly, highly, highly recommend that you talk to your loved ones about what they want and why.
[00:12:03] Why do they want that? Because understanding the intentions behind those thoughts are just as important.
[00:12:11] For example, if someone says, if I'm a vegetable, keep me alive for six months, and if I don't come back, then you can go ahead and pull the plug. Okay?
[00:12:21] Got it.
[00:12:23] My husband said, if I end up in a wheelchair and I can't, like, if I end up paralyzed, as long as I can still help people with my mind, as long as I can still contribute to society, and my mind is 100% functioning, then I want to be kept alive. That's what I want. If I am in a coma and it's most likely that I will come out of this and be okay, then that's what I want you to do to keep me alive. Even if I'm going to be paralyzed, because I want to contribute to society. Okay, I understand why that is.
[00:13:04] Someone else says, I am a 30 year old DNR. I do not want to be resuscitated. If I end up dying, for whatever reason my body has chosen to give up, then fine, I'm fine with it. Other people don't like that. Says, you're too young, you shouldn't be a DNR. You know what? That's how I feel.
[00:13:23] Why do you feel that way? Because if my body is shutting down, I don't want to force myself to stay alive. If I am without oxygen long enough and I'm going to be mentally or physically impaired, I don't want to be here on this earth. I don't want to be a burden to other people. I just don't want to deal with it. So I would rather you let me go than be a DNR and then I have to.
[00:13:50] I would rather you let me go than bring me back. I don't want to deal with the broken ribs and all the crap that I'm going to have to deal with if you do CPR to bring me back.
[00:13:58] Why is that? Why doesn't my mom want to live in a diaper or be stuck in bed? I totally get that. There's no question about where that is.
[00:14:09] My mom, on many, many levels, feels like she has lived a good enough life. She's 20. She's 72 years old. 27. 72 years old. This is where she's at. She's like, I'm good. I wish I wasn't dealing with this. I'm angry about having to and I wish that I would just fall asleep and not wake up. I understand that. And if I can support you in any way, then I'm going to do that.
[00:14:36] Does it serve me, too? Sure.
[00:14:39] Because at one point, I will be released from caregiving for her, and that in and of itself will be a double edged sword that I will have to deal with.
[00:14:50] All of those other people out there that are judging, they're not the ones that have to deal with your choices. They're not the ones that have to deal with your decisions for your loved one, you are. So if you feel okay and you feel relief, and if you feel in your heart and in your gut that this is the path that you need to do for you, then I highly encourage you to do that.
[00:15:15] Know that I'm on your team. Know that I agree that this is a unique journey for each and every person dealing with it. And in that unique journey, you have to make unique decisions. There is no cookie cutter answer to this. There is no black and white.
[00:15:32] It's all gray. And what works for you?
[00:15:35] I'll get off my soapbox now.
[00:15:39] I'll send every one of you a ton of love and ton of support and a ton of encouragement because it's not easy. And you are a hero for doing what you're doing.
[00:15:49] You are a hero to that loved one who needs that extra support. And they can't do it themselves.
[00:15:55] You're amazing. And you are a gift.
[00:15:59] So thank you for being that person. Thank you for helping them out.
[00:16:06] Come back next week. Until then, take care.
