Episode Transcript
Welcome back to the next episode of Lewy Body and Mindful Caregiving with me, your host, Krystal Jakosky. And thanks for choosing to come back.
I hope that you are able to report that you did some self-care and how much it helped support and fill your cup. Today, I really want to talk about the importance of end-of-life documents. I'm a huge advocate for end of life, and I'm a huge advocate for putting your affairs in order well before that time comes.
I've had loved ones, very close loved ones, who have planned everything. Well before they passed, they had already paid for their coffin, they had already bought their plot in the cemetery, and they had planned out their memorial service down to who was speaking, what songs would be sung, and by whom, who would preside over the whole thing. Who would say the prayer at the graveside to dedicate the grave? Everything was already written down and taken care of. And as far as their possessions, they had completely listed it line by line. You knew exactly what was going to happen.
And then I've known of people, close people who have passed very suddenly, and in passing very suddenly they didn't have any documents done. There was no will; there was nothing with their passwords. There was no way to know what subscriptions they had. 'cause “they're young.” “ I'm only 35; it's not a big deal.” Enter a blood clot that takes them like that. <finger snap> And now the loved ones were left trying to pick up the pieces, trying to figure out how to deal with this. They've had some of that conversation, and they've kind of mentioned it and talked about it. So we knew kind of what they wanted, but there was no, there was nothing written. There was no definite; “this is what I want done and when.” So on the one hand, we kind of knew, and on the other hand, we kind of had to fill in the blanks and make it as honorable to them as possible.
When my husband's grandparents passed away, his grandfather passed away five weeks before his grandmother passed. They were very sweet. They'd been married forever, forever. And during those last five weeks with his grandma, he was able to make sure that everything was in place and learn where is the will? Where are the documents? Where are your passwords? Where are your accounts? What do I need to do to take care of this? What do I need to do to take care of that? And those five weeks were absolutely precious because she was lucid. She was, you know, she was 89 years old and her brain was there basically. And so she was able to guide and help through that because her husband had passed. She was able to help with his stuff, and then we were able to take care of her because of the way that things went.
All of these experiences leave me with this drive, this unbelievably strong desire to spread the word that we don't know if we’ll pass tomorrow. We don't know if we'll be in a plane, it'll go down, if we'll be in a bus accident, if we'll have a blood clot, if we'll just collapse on the toilet. We don't know when it will happen or what will happen. And at minimum, at minimum, somebody needs to know what you want and what you need. The problem is if the people who find you don't know who that person is, then what are they supposed to do? And how are things supposed to get moving forward? I tell everyone it's time to take away the stigma and the fear of talking about death and start talking about how we want to celebrate each other.
When my mom moved here before the diagnosis, before everything else, I sat down with her, and I told her that I needed to know because I knew that I would be the one taking care of it when the time came. My siblings, like I just said earlier, live in different parts of the country. And so it's on me. They want to help, meaning my siblings, they want to support, and they would be there if I called them. And yet, I am boots on the ground. I am right here. So when she passes, who do I need to call? What friends does she want me to notify? What family members? And who's going to do all that calling? Because I'm going to be dealing with the fact that she's passed and the coroner and anything else in that vein. So my mom and I sat down, and you can do this too. You check in with your state to find out what your state requires. Here in Colorado, most of the stuff did not need to be notarized. However, I notarized it as an additional security. I wanted to ensure that this was signed, dated, notarized and that people knew for a fact that this is what my mom wanted.
I had a witness there that could say, yeah, that woman was absolutely of sound mind when she said that. This is what she wants. You need to have someone who can be your medical power of attorney. Who do you want to make those medical decisions for you? Should you be unable to? And there are a ton of different scenarios that you might want to go through and think about. Do you want CPR or not? And if you don't want CPR, why is that? If you do want CPR, why is that? You need to have someone who is a financial power of attorney so that if you are incapacitated in a hospital, somebody can still pay your bills. Somebody can still help you out. What if you're in the hospital for two months? You still gotta pay for your phone and your house and your car and your insurance and all of the bills that come up.
How do you want your body to be dealt with when you pass? And there are a ton of different ways, from the traditional putting you into a coffin and putting you in the ground to cremation. There's also water cremation. There is composting. There are different types of natural burial where your body is simply wrapped in a shroud and placed in the ground. There are a ton of different ways that your body, this vessel that you're living in, can be honored and respected at the end of this life. But if you don't share that with anybody, they don't know, and they're just going to have to guess. It might be that you absolutely hate the idea of being stuck in a coffin because the idea terrifies you. But if you don't tell anybody and they don't know, they may decide that that's where you're going. A different loved one. A parent a family member, may step in and say, “Oh hell no, you're not cremating. You are absolutely preserving that body, and you are putting them in the ground.” If you don't verbalize it, if you don't have it written down, if somebody doesn't know what you want, your wishes will not be honored. Nobody can honor what you have not spoken into reality.
My mom and I went down this, we went through absolutely everything, and I felt pretty good about what she wanted. My mom's a DNR and she's a DNR because she's 73 years old and her body is slowly shutting down already. And CPR chest compressions, breaks ribs, just a part of what happens to be able to push your heart enough to pump the blood. My mom has no desire to heal from both. Whatever ailment made her collapse in addition to broken ribs and whatever else happens due to the CPR, my mom says, “No, I don't want that anymore.”
I felt like I had a lot of good information and I felt very strong and confident about my mom's direction and the diagnosis until I took the savvy caregiver class. And then I was like, “Oh my gosh, how do I deal with her end of life now?” Because it's not gonna be that my mom collapses sometime. It's not going to be that random holy cow. She's not gonna be hit by a car because she can't drive anymore. I'm driving her everywhere. I'm taking care of this stuff and I don't want her to be, she doesn't want to be, kept alive by machines or feeding tubes, whether it's intubation, so that she can breathe. None of it. She doesn't want any of it. But through dementia, she's slowly going to decline. She's going to forget.
She'll slowly be unable to cook her own food. She will slowly be unable to walk around. She will slowly lose the ability to go to the bathroom. She will likely lose control of her bowels. She will likely think that I'm an imposter at the very end. Someone with dementia or Alzheimer's is bedridden, largely non-responsive. 100% reliant on somebody else doing whatever with their still living, breathing body. I didn't like the direction that was gonna go in. And then I held a death cafe.
Now, a death cafe is where people get together and they have coffee, tea, cake, and they talk about all things death. It's something that was started in England, in the eighties and kind of fell out of favor. But now it has this resurgence. And here in Boulder, there was a group that approached me. I am now a facilitator of this death cafe group here in Boulder County and in that group, one night we were talking about all of the paperwork that has to be done when it comes to end of life.
Somebody mentioned something called a dementia directive. Now, a dementia directive is just like any of your other medical directives, no feeding tube or is a feeding tube okay? No intubation to help me breathe. No respirators or is a respirator, okay? No CPR or is CPR okay? All of these questions, right, that you need to answer for yourself if you think you're gonna have a normal life. And then there's this other one that's a dementia directive. And the really cool thing about this is that it lists it out. It's three pages and the first page says, “If I am in the early stages of dementia….” And then it explains what those early stages are, what it will be like. You're a little bit forgetful. You're this, you're that. At that stage, do I want, “keep me alive at all costs?” Do I want “keep me alive, but no CPR. Or do I want, “Don't even worry about it. Comfort measures only.”So you pick one, and the next page is in the middle stages of dementia.
These are the hallmark signs of the middle stages of dementia. At this point in your life, do you want to be kept alive at all costs? Do you want to be kept alive with CPR, but no intubation and no feeding tube? Do you want to be comfort measures only?
And then the last page is in the late stages of dementia, what do you want to happen? And it tells you about what the late stages will look like. Do you want all lifesaving, life extending measures? Do you want everything shy of CPR and intubation in a feeding tube, or do you want just comfort measures?
Now, my mom has her answer. My mom let me know, “Hey, when I hit the middle stages, I'm shifting to comfort. Comfort measures only if I have a sharp pain. If I have what we think might be a kidney stone, I don't wanna go to the hospital. I don't wanna extend my life. I just want to be kept comfortable.” Now, the crazy thing about this is that she could get a urinary tract infection and they present differently in aging populations. They're not as painful and uncomfortable. She could get a urinary tract infection because she's incontinent, and that's just going to happen. And instead of treating with antibiotics, we're going to just keep her comfortable. And if it goes sepsis and she passes, then that's what she wants to do. If my mom has a kidney stone, give her pain meds, help her be comfortable. Let the kidney stone block the path from the kidney to the bladder, and it's okay. Let her kidney shut down.
My mom was able to verbalize this. My mom was able to let me know. And what this does for me is it means that I know how to honor her. I know how to respect her wishes, and I don't have to look at my siblings and say, “Hey, what do I do? This is where we're at.” I get to say, “This is what Mom wants, and I am upholding her wishes.” It's a completely different perspective and point of view. 'cause instead of me deciding that it's time to let her go, I get to look at this and say she wanted to go. She does not want to get this far. So we're going to allow her wishes to be respected.
Turning that around on myself, it means that if I go ahead and fill out those dementia directives now while I'm young and doing all right, then down the road, I've already got those out there, and my kids will both know that I want this. Mom was very adamant, and she knew exactly what she wanted. So we don't have to stress and we don't have to worry about it. It brings an unbelievable peace of mind.
This is where I ask you to be compassionately selfish. You want to know what the people around you want done so that when they pass, you can best honor them. And not only that, you want them to know what you want done so that they can properly honor you. It means that when my mom passes, yes, I will be mourning, and I will be struggling, and yet I won't be as bad because I'll know I take this step. Then this step. I call these people and then these people. Instead of stressing out, “Where are her passwords and how do I deal with this stuff?” I already have my answers. Your end of life documentation is so, I cannot tell you how desperately important it is for you to do it for yourself, but also for you to do it for your person. If they have a moment of lucidity, depending on where they're at in this disease, if you don't have this information, how can you help them do it early? If you're in the early stages and they're still largely lucid and they're still pretty dang capable, they can make those decisions and thoughts known, then do it. Figure it out so that when the time comes, and as things decline, you already know. It will bring you unbelievable peace knowing.
So thanks for listening today. That was kind of a big and heavy one. I encourage you to go do some self-care. Take care of yourself, and come back here again next time. For more on Lewy Body and Mindful Caregiving.
