Episode Transcript
[00:00:09] Hello and welcome back to Lewy body and mindful caregiving. I'm Crystal Jakowski, and thank you for joining me today. I want to talk about keeping a loved one around. Who are you doing it for? Why are you doing it for? And I always start with self care.
[00:00:29] So what did I do for self care? For myself, I withdrew from the drama.
[00:00:37] I found a way to allow myself to be a human being instead of a human doing and saying, you know what?
[00:00:44] That is your experience. That is your experience. That is not my experience. So I do not need to be as, um, angry or frustrated as you are while you're telling me that story. I don't need to get pulled up into it. I can let it go and say, you know what? Not my monkey, not my circus, not my pasture, not my bullshit. That I can let it go, um, and not carry it, which is a big deal because I carry it for a lot of people, and there's no reason for me to carry anybody else's stuff. So I worked on withdrawing from the drama, sitting with my own stuff, and what needs to happen today instead of all the others. So that was really, really great.
[00:01:33] There's been this interesting strain of conversations that I've had of late, and.
[00:01:42] And I want to talk about it here because I think this is the safe space to talk about it, or it's one of the safe spaces that I create to talk about it, and I think that more of us need to talk about it.
[00:01:56] There's this gal at work, and her husband had a major heart. Not her husband. Her dad had a major heart issue. He's in his eighties, so he's up there in this medical issue that he had.
[00:02:14] They were in the hospital. The hospital wanted to do all of these tests. They wanted to fix this. They wanted to fix that. Um, some of them were invasive. Some of them weren't invasive. Um, she didn't want to do any invasive stuff, but she also wanted them to keep her dad alive as absolutely, humanely long as possible.
[00:02:34] Um, eventually, dad comes out of the hospital and she has him at home, and she's still like, how can I make him as safe as possible? I need him to be around for a couple more years. I can't let him go. I am not ready for. For that. And those were her words. I need to keep him around. I need this. And her dad had been very clear. I don't want all of this stuff, and I don't want to be kept alive.
[00:03:02] This is just one of several examples of people who have talked to me, or stories that I have heard of people who are just like, I just. I'm not ready to let them go.
[00:03:14] I'm not ready to let them go now.
[00:03:19] Every time I hear this, I just want to give them the biggest hug ever. I really feel for the fear of not having a loved one around, that they can go visit physically, give them a hug, hold them, laugh with them, talk to them, hear their voice, hear them call you that nickname that they've called you since you were a little kidde.
[00:03:48] I understand the fear of losing a loved one.
[00:03:53] I really do.
[00:03:56] Going through this experience, though, my question becomes, to what extent and why?
[00:04:07] Who are you keeping them alive for?
[00:04:11] Did they say, keep me alive at all costs? Did they say, I want to be here no matter what. I don't care what it looks like, even if I'm a vegetable, do not let me die? Like, did they actually say, I'm okay with this?
[00:04:26] Most people that I talk to will say, if I'm a vegetable, six months. Give me six months, and then it's okay to let me go. Other people will say, if there's not brain activity or if I am going to have a greatly decreased quality of life, then let me go. I don't want it. I know other people who just say, just let me go. I'm a DNR. I don't want to be around. I'm good. I could die tomorrow and be okay.
[00:04:58] I think that this goes back to our upbringing and our first experience with death, whether it was scary and upsetting or calm and soothing. Like, what was your first experience with a funeral? Were people weeping and wailing and that just made you go, oh, this is a bad thing. This is a sad thing.
[00:05:24] When someone died, was it more like a family reunion? Like my family? And all of these people that you haven't seen in years and years and years now magically come together and you talk about the person that passed, and then you catch up on each other's lives and you laugh and you joke and you reconnect in a positive way, even though it's sad that you've lost someone and then you move on with your life. My grandparents had all put together their funerals. They knew who was going to talk and who they wanted to talk and what songs would be sung and where they were going to be buried and how. I mean, everything from soup to nuts.
[00:06:06] I don't know if my grandparents had put together an end of life, detailed thing like, do you want to be intubated? If you can't breathe on your own.
[00:06:27] Do you want to be fed through a feeding tube?
[00:06:32] The other life saving or life extending measures that can happen. You know, if I'm in a coma, if I have to be put into a coma for a head injury or whatnot, like have. I don't know if they actually went through those types of things. And those are things that I strongly advocate for people to go through.
[00:06:54] Let people know where you're at and how you feel and what you think.
[00:07:00] When we have a loved one that's sick, we are afraid of losing them, and we have a choice because they can't make that choice for them.
[00:07:18] They can't make their own choices.
[00:07:21] What do you choose?
[00:07:26] I was recently in the doctor's office.
[00:07:31] My doctor happens to be my mom's doctor. I made it that way on purpose so that I could talk to her about either one, my stress level, my whatever, that I had better access.
[00:07:49] And it is a concierge type medicine where I pay $2,000 a year, and they respond faster. And I decided that self care wise, it was smarter for me to do that so that I would have faster answers and my mom wouldn't have to suffer for five days waiting for a different doctor to make a decision on what needed to happen for her and how we were going to help her.
[00:08:13] So I was in her doctor's office, and her doctor knows where my mom's at. She knows that she's got dementia. She knows that my mom is in pain, and she's anxious.
[00:08:24] And back in January, this doctor is the one that took my mom off of this one medication.
[00:08:38] And in taking my mom off of that medication, my mom bounced back in January. My mom was declining greatly, and I didn't think she would be here by the middle of the year. Her blood work supported that until we changed her medication, and that medication fixed the issues. And now my mom could be with us for another three years, five years, whatever.
[00:09:08] So when I went to the doctor for my annual exam, another little bit of self care, even though I don't like them, I went in and she said, what do you want to talk about, and how is caregiving going? And I let her know that at that point, I was a little bit sad that we had changed my mom's meds, because in changing her meds, we have lengthened out the amount of time that my mom is going to suffer from this disease.
[00:09:40] We had the possibility of letting her go so that she didn't have to go through some of the uglier stages, but we changed things, and we fixed them so that she was around. Now. My doctor was shocked that I would say this. She was absolutely shocked that I would say this.
[00:10:00] She couldn't believe that I would be a little upset that my mom hadn't passed until I explained to her that now my mom has anxiety and she's got wrist pain, and she's starting to fail just a little bit in personal hygiene, that her life quality of life, on some levels is better from changing meds and on other levels is not. And now we have a longer decline.
[00:10:37] When she looked at it from that point of view, she was like, oh, I get where you're coming from.
[00:10:43] A lot of people look at me this way.
[00:10:46] They look at me as though, how can you be so callous?
[00:10:51] How can you be so horrible to say that you want your loved one to be released from this world until they really understand the behind the scenes? So many people want to keep their loved one around because they don't want to lose their loved one. But what is it doing to your loved one?
[00:11:11] What is your loved one suffering through? How does your loved one feel about still being alive on this plane?
[00:11:22] My mom, multiple times over the last three years.
[00:11:30] It's been before the diagnosis that my mom would tell me, I wish I would just go to bed and not wake up.
[00:11:41] She's been feeling this way for years before this diagnosis. She is done with life. She doesn't care anymore. Her body keeps going, keeps trucking along.
[00:11:57] But mentally and emotionally, my mom is exhausted and done with this world.
[00:12:04] In that vein, do I continue to keep her alive because I want her around or my siblings want her around, or because there's this mental, societal block that I'm supposed to keep, like the preciousness of life at all costs?
[00:12:26] What's the reality when our pets are no longer thriving?
[00:12:32] When our pets are really struggling to walk, to eat or drink, to get around and enjoy their lives?
[00:12:43] We take them in and we find out what's wrong with them.
[00:12:46] And if there's something bad, many of us say, let's release them from their suffering.
[00:12:54] Let's let them go.
[00:12:56] We do a humane thing and let them go over the rainbow bridge.
[00:13:05] But we can't do that with human life.
[00:13:10] When they are in pain, when they are confused, when they are angry, when they can no longer feed themselves, they are in diapers, they are laying in a bed, unable to move and function, we continue to force keeping them alive.
[00:13:29] Now, there are a myriad of ways that our loved ones can pass. It's when they're dehydrated and they're just not drinking. You can go to the hospital and have them get an iv to give them more fluids so that they will live longer.
[00:13:51] That is extending their life. Do you want to do that?
[00:13:56] Your loved one is in a nursing home or a memory facility and they say they're not really eating, so we're going to give them esure.
[00:14:07] Esure is giving them nutrients and vitamins to extend their life.
[00:14:16] We don't think about the little things that can help them, help their bodies let go, be released and allowed to move on from the pain, from the confusion, from the challenge that they are going through right here, right now.
[00:14:37] We have to come to a balance and a space of saying, I am okay if my mom passes today, tomorrow, next week. I am also okay if my mom lives for five more years.
[00:15:00] It is what her body is going to do and it is what she wishes for in this life or death as it would be.
[00:15:11] It's what your loved one wants.
[00:15:17] Yeah. It's hard to let them go. Yeah, it's scary.
[00:15:21] You're not going to have them around anymore, and yet it is their wishes, their life and choices.
[00:15:31] Would they really want to stay around when somebody else has to wipe their bum, somebody else has to give them a shower, somebody else has to take care of so many of their basic needs.
[00:15:46] Human dignity at that point, why can't we have the discussion of how can we allow them to pass? How can we allow their body to take over and shut down in the most kind, gentle way possible?
[00:16:11] We love our loved ones. That is why we are choosing to care for them. That is why we have chosen into this unbelievably difficult experience.
[00:16:26] If you love your loved one that much, can you love them into their end?
[00:16:38] Instead of forcing them to stay for us? How do we come to peace and allow them to go for them, for their ease?
[00:16:49] I would encourage you to do your research and look at it.
[00:16:55] The first time I said, I wish that we hadn't changed my mom's meds, I felt like an asshole.
[00:17:04] I felt horrible for saying, I wish that I had allowed her to be released.
[00:17:15] But now I know it's okay.
[00:17:22] And I would rather verbalize it to people and help them know and see and think ahead. The next time we talk about changing her meds to improve her quality of life or improve this or that, or to reverse her heart failure.
[00:17:45] No, we want this to be okay.
[00:17:54] It's all right.
[00:17:56] I want to be ready and prepared for the next time so that I don't have those regrets that, gosh, she could have avoided all of this if I hadn't done that one thing, if I hadn't extended her life further with that one thing, if I had been smarter about how I was helping her through this life.
[00:18:19] Our loved ones will not die from Lewy body, from dementia, from Alzheimer's. It is always a different complication that will finally release them from this world.
[00:18:34] Always a different complication.
[00:18:38] Starving because they can't eat, they might asphyxiate. When they try to swallow, they can't drink, so they're dehydrating. Some kind of heart failure, diabetes, an infection, a million different ways that the body finally succumbs and lets go. But it is never the disease that is never said it was. Well, dementia is what took them. No, it wasn't. It was a different way that their body finally shut down. In the moment.
[00:19:12] We have to see that, be aware of that and embrace that possibility so that when that time comes, it's less upsetting and more aware. There was a lady. I was told of a lady. Her husband had been in memory care for ten years with dementia. He had stopped eating and drinking. He just kind of roamed the halls. There wasn't anything.
[00:19:40] He was just a calm, sweet old man.
[00:19:43] He was on palliative care, kind of waiting for hospice to start.
[00:19:50] He'd been there for years, years and years and years and years. He finally stopped eating. And they asked her, do you want to start doing esure? To give him nourishment? And she initially said yes, until a friend of hers who is very well versed in end of life reminded her that Esur is adding nutrients, which is extending his life. So how do you change that? She took him off Esur and allowed his body to choose to stop eating, to choose to stop drinking, and then they could release him. He had been in this state for ten years, slowly declining, slowly needing more and more assistance.
[00:20:36] I'm super grateful for these stories. I'm super grateful for these experiences, because it lets me prepare for me with my mom. And not only that, it lets me express it to you guys, too, so that you guys can start thinking about what do I really want, and how am I going to support and nurture my loved one as they move forward? As sad as it is, how am I going to get to a space of being okay, letting them go, being sad that they weren't here, but being so very grateful that they are no longer held in the confines of this body and this brain that are no longer working for them.
[00:21:15] It's a challenging conundrum of emotions to be on both sides of that fence, and yet I pray. But that peace and relief that they have been released outweighs some of the sadness, pain and anger that's there.
[00:21:41] Well, thanks for being with me today.
[00:21:49] Give yourself some extra self care. Give yourself some extra love. Give your loved one some extra love. And just know that life is good.
[00:22:01] It is okay. It is exactly the way it's supposed to be.
[00:22:05] You will navigate this. You will do a beautiful job, and they love you for it, even when they cannot express it.
[00:22:15] Give yourself a little love, a little extra compassion, and a little peace, knowing that you are doing an amazing service to those loved ones.
[00:22:26] Do the same thing for you. And until next time, take care.
