Episode Transcript
[00:00:10] Welcome back to Louis Body and mindful caregiving. I'm Crystal Jakowski, your host, and I'm glad that you're here. I really hope that you are benefiting from the information that I'm sharing, that you are learning from my experience with my mom, and that you're finding to tools and tips that really help you.
[00:00:28] This week, I want to talk about the phrase of the long goodbye and how the long goodbye can actually be a gift. So we'll dive into that in a moment. But first off, I always start with self care because it is the most important thing. If you don't take care of yourself, you will not be able to take really good care of your loved ones. So what did I do for self care? And to be honest with you, I cried. I cried and I took a nap because there were some rough moments and that's perfectly fine. So I allowed the emotion to flow through me as I worked through this experience that is before me. So the long goodbye.
[00:01:10] Dementia and its myriad of forms. There are over 400 types of dementia. They're all under that same umbrella, including Alzheimer's and whatnot. So frontal temporal and vascular dementia, they're all dementias. They're all issues with the brain and memory.
[00:01:32] A lot of people say that this is horrible and it's not fair. And you watch your loved one die twice because you watch them slowly lose their mind and they die to you that way. They forget you, and then they die a second time when their body finally gives out and they are released from this world. And that's very sad.
[00:01:56] It breaks my heart to think of it that way because I don't want to look at it that way. And I totally understand why people look at it in that light because it's hard. It's hard to go talk to your loved one and have them not remember you or treat you more like a caregiver than a family member or a servant, like somebody who's.
[00:02:24] You need to take care of this. You need to take care of that. It's hard to watch them be incapable of functioning and remembering things and planning things, their cognitive decline, their physical decline.
[00:02:42] It's really sad and upsetting and frustrating. And there are times that you rail against the whole experience because you're so angry. You have no control. The thing is that this is actually a huge. It can be a huge gift if you choose to look at it that way.
[00:03:03] Doesn't make things a ton easier, but it does make it a little bit easier. And I want to explain why, because this is in my experience, when somebody dies, suddenly they're gone. They are just like that, no longer here. You can't call them, you can't check in on them. You can't see them.
[00:03:31] When somebody has dementia, you know that you have a little bit of time, you know that you can preserve things.
[00:03:42] You know that you can maybe create a new relationship with them. Now compared to what you've had in the past, they change a lot.
[00:03:56] There's those old recipes of grandma's, right? And grandma's gone now, so you can't ask her what she did with those recipes. And maybe the family, after she passed, tried to make grandma's pumpkin bread or the chocolate chip cookies or whatever it is that grandma made. And everybody wishes that they could get again. But when you make it, something's just a little bit off, something's not quite right and she's not here, so you can't ask her. But my mom, here's a perfect example. My mom loved to bake and she loved to experiment and have fun with things. And so my mom has all of these recipes. Well, I could go and I could get my mom's applesauce dairy recipe and I could try to make my mom's applesauce dairy recipe, and it's not going to turn out the same. You know why? My mom doesn't use applesauce.
[00:04:53] She uses peaches that she's pureed or she uses pears, but she doesn't use applesauce. And I wouldn't know that and I would be frustrated after she left. But I have the opportunity to say, hey, mom, you know that pumpkin recipe that you had that you used to make all the time? I want to know, what did you do different? What did you do different? Because if I had my grandma's recipe, my grandma's recipe would only call for three cups of sugar, but my mom puts four cups of sugar in it.
[00:05:23] There's another recipe that my mom has and it actually calls for a can of condensed milk. And my mom says that's just stupid. I'm not going to use a can of condensed milk. I'm actually going to use milk and water because you're just reconstituting the condensed milk with the water or whatever else that you're adding. So she does it differently. And the condensed milk would give it a slightly different flavor. The extra sugar is going to give it a slightly different flavor.
[00:05:53] I can learn these things because I have the long goodbye.
[00:05:58] There have been people who have mentioned that they wish that they had, like their dad always called them a certain name and referred to them in a certain way.
[00:06:09] Or their mom had a phrase that she said all the time, and they wish that they had that recorded, or they wish that they had their parents handwriting. I've known some people who do get their parents handwriting, and then they have it tattooed on their body somewhere. I love you or to the moon or whatever it is on them so that they can then look at it. Other people don't necessarily have the handwriting, but they have the phrase, so they have somebody else write it, and then they get it tattooed on. Well, with the long goodbye, guess what? I have the opportunity to record my mom in any way I want to.
[00:06:49] I can have a conversation with her and just kind of discreetly have my voice memo app open and chat with her about her past, chat with her about what she really loves and what makes her sad.
[00:07:05] I can hear those things, those phrases that she said forever. My grandma, before she passed, she passed very suddenly, but before she passed, it was somebody's forethought. And they recorded this birthday song that my grandma sang to every one of us every year.
[00:07:26] So now I have this recording of my grandma singing that song because somebody thought to record them. Somebody said, hey, mom, we'd like to record you, grandma, we'd like to record you singing that song so that we have it forever and ever and ever. And grandma wasn't really happy about it. She was like, but she did it anyway. Well, I can do that with my mom.
[00:07:48] I can do so many things with my mom because I know that I only have a little bit of time, but I have more time than somebody who passes suddenly.
[00:08:01] When my mom was diagnosed in November of 22, I waited until January so that my siblings and everyone could have their holidays.
[00:08:11] And then in January, we had a sibling Zoom call, and I let them know what was going on with mom and the prognosis and how things would look. And every one of them said, thanks for letting us know. And every one of them needs to process it in their own way. Now, one sibling immediately started. She had already been calling my mom every week.
[00:08:36] Every Wednesday, my mom knew the first thing in the morning, she was going to get a phone call from this sibling, and she would talk to her, and they would have their little thing, and then they would go on with their week. But every Wednesday morning, mom knew she was going to get a call. Well, that sibling is thrilled that they had already established this routine with my mom, and it has just continued. And so she's gotten to know my mom a little bit more on a different level and been able to really see and connect with her in a new way over the last year. It's, oh, I only have this much time with you, so what can we do with that?
[00:09:19] Another sibling started calling her a few months ago on a regular basis. So now she has one sibling calling her on Tuesday, one sibling calling our on Wednesday. And my mom delights in giving me the update on both of them. Well, this family's doing this and this family is doing that. Did you know that? This family is doing whatever. But those siblings have a new relationship with her and a new understanding, and it means that in some way they're able to heal some of the past upset and frustration because they have a new understanding and a new way of being with her. They get to see her in a new light. That's a gift that they would not have had if she was just magically gone.
[00:10:05] They are able to make a little bit more time. They may live out of state, but they can still have a relationship with her.
[00:10:15] It doesn't have to be a negative thing when they say it's the long goodbye and I'm going to jump on my soap opera, my soap box again to remind you that end of life planning is paramount, especially in the early stages when they still have more of their cognition and they're more of their ability to think. And it's actually even better to do this way before somebody gets sick. You should do it absolutely right now. My mom, I know that she does not want to get all the way to the end where she is incontinent, unresponsive in bed, just laying there. I know that she really wants to have more of her autonomy.
[00:11:05] I know at what point she says no more. We're not treating anything anymore. We're just keeping me comfortable. We're there, right here, right now. My mom is 70% of the way with it. Not really.
[00:11:27] She's kind of independent in her own house as long as she's just there.
[00:11:33] I'm doing her meds, I'm taking her to all of her doctor's appointments. I'm managing so many things on her behalf, and yet she is still able to heat something up for lunch. She takes care of personal hygiene. She still takes a shower every night, and she's religious about brushing her teeth. She changes her clothes in the morning. She does her laundry.
[00:11:52] There are over learned behaviors, behaviors that she has done all of her life that she is still able to do right now. So in this long goodbye, I know that my mom's long goodbye will not be as long as it could be because of her choices. We've made that decision together. She knows and trusts that I will manage it for her. I have a shorter amount of time because my mom is adamant. I'm not treating anything else. I just want to be comfortable. Treat the pain. Don't try to understand why I have the pain. Don't fix the underlying issue. Just keep me comfortable.
[00:12:38] The long goodbye I've had this last year with her where I could preserve her handwriting, I could preserve her recipes, I could preserve some of her traditional statements that she says all the time and that you're like, yes, that's so totally mom.
[00:12:59] So that when I hear her voice in my head, I could actually go play a little thing and say, yeah, I hear mom. That's totally her right there.
[00:13:10] I can look back at this time in gratitude because I will be able to. I've largely been able to say pretty much everything that I wanted to say with a different light in it and with a different compassion. Knowing that she's really struggling.
[00:13:27] This is the way it is. It's not going to get any better.
[00:13:31] The long goodbye, while it is difficult, it is frustrating and emotional and overwhelming. It is a gift. What can you do in this time that you are gifted with your loved one so that you can make things better, so that when they leave, you know, I had that time with them.
[00:14:02] I had that time with them. And I'm so grateful for that opportunity.
[00:14:07] I'm so grateful for that gift. When they passed, I didn't feel like there was a huge chasm between us anymore because I took that opportunity.
[00:14:19] What is it that you would like to do?
[00:14:24] To heal, to fix, preserve. Whether your loved one has dementia or not.
[00:14:34] Now, those of you who have loved ones, or if you have dementia, there may be things that you want to preserve. Maybe you want to write letters to those people that you'll leave behind.
[00:14:46] Maybe you don't have dementia, but you recognize that it's better for you to preserve and save for those that will still be here and that will miss you and love you.
[00:14:59] Take a moment and think about it. What do you want to save? What do you want to gift to your posterity, your friends, your family, your loved ones? And turn it around. Turn it around. Yes, it can be get difficult. However, the long goodbye, I believe, is absolutely a gift that you can embrace and run with.
[00:15:23] Thanks for listening. Have a wonderful day. Preserve something that you can do, a little self care, and I'll see you next time here on Louis body and mindful caregiving. Take care.
