Can't Even Choose to Die with Dignity

Morning meditation complete. It's time to check my cell phone to see text messages and emails. What's been going on in the world overnight? Ding, ding, ding,ding, alert, alert alert! Literally wveryone, personal friends and Google wanted me to know about Amy Blooms book In Love, A Memoir of Love And Loss. She was talking about her husband, who recently passed away. Why did it matter to me? Well, her husband had Alzheimer's and chose to die with dignity. Here's the catch, dude was an American. So as Amy Blum, a famous author, they had to go all the way to Switzerland, because apparently, you can't choose to die easily, even with the die with dignity laws that are on the books because with Alzheimer's it is not acceptable. You mean to tell me that if Zetty looks me in the face and say "that's it JG I'm out of here. I'm ready to go. I want to die." And I'm strong enough to accept said wishes, that y'all trying to say I can't do it. We can't do it. You ain't gonna let me, let me tell you some you got to find out you're gonna learn a day uh hu. Let me tell you some you got to learn let what Hello. Parenting Up is the caregiving adventures with comedian J Smiles. It is the intense journey of unexpectedly being fully responsible for the well being of my momma. For almost a decade I've been chipping away at the unknown, advocating for her. and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler Alert- I started comedy because this stuff is so heavy. Be ready for the jokes! Caregiver newbies, OGs, village members trying to just prop up a caregiver you are in the right place.

Hi this is Zetty. I hope you enjoy my daughter's podcast. Is that Okay? Speaker- J Smiles

Parenting Up family, did you know that in the United States the Dying with Dignity laws that are on the books in about 15 or so states do not include Alzheimer's or dementia sufferers, period, end of story. I had no idea. I thought pretty much anybody who's terminally ill which means you cannot beat the disease that you have, you gonna die, and if you want to go ahead and die a little bit earlier than your heart and your lungs go kaput; you sign some paper and they give you a shot or some morphine, a hammer to the head. I don't really know how it works. I've never witnessed it, but I thought you could do it. Apparently, you cannot. I didn't go digging for 18 years, or 40,000 hours on all the internet searches of the world. Amy Bloom is a New York Times best seller. She has written quite a few books and she is highly respected. If all her connections and her money and her rarefied air couldn't figure out a way for her husband to have his wishes met in the United States and they had to go to Switzerland and that was her only choice. I'm gonna go ahead and say that me and you, your cousin and your mom or two. As a shout out to a hip hop reference song, I won't go into that. We probably only have the option of Switzerland, which for many of us means we have no options and I was some kind of hot about it. Which gets me back to the first premise on what made me want to start this podcast. Alzheimer's and dementia related diseases do not have enough shine. We don't get enough media hype. There's not enough awareness for these diseases and what the family members go through and what the people who had the diseases go through. Not only that you have the diagnosis and you're living with the complexities and the parameters that suffocate you, but then do you know how hard it is to decide, alright, you know what, I'm gonna go ahead and die because what I haven't hit ahead of me sucks. And then somebody tells you know what you can do it. I'm about to go ahead and break down why they say you can't but talking about being pissed. NPR.com had a great quick audio read on it, y'all know I don't like to read words with my eyeballs and so this is how I digested the majority of this information. But Amy's husband was diagnosed with Alzheimer's and he did not want to lose his mind, that's a straight answer. Okay, let me Yeah, I promised y'all I would tell it to you as clearly as I could. His name is Brian Ameche and he said, "What I don't want to do is forget your name or where we live or how to tie my shoes." He ain't want to do it. He was diagnosed early onset. He knew enough about the disease. He did extra research. They gave him his options. He said I uh huh, that ain't for me, like the way Zetty currently exist. Even though to most people Zetty's quality of life isn't that bad as Alzheimer's goes. She's still walking and talking and sitting on the toilet and standing up and doing a little bit of calisthenics on a treadmill, hugging cute boys differently then she hugs ugly boys. I should have said she's hugging cute boys differently then she hugs women that she loves. Yeah, okay, that sounds better. But Amy and her husband figured out that all of the laws now mind you out of 50 states in the United States only 15 even have the Dying with Dignity laws, but get this there are three parameters that pretty much all 15 of the jurisdictions agree upon. You have to be dying in six months or less as agreed upon by the medical industry. You have to have decision making capacity at that time. And you have to be able to self administer the legal dose or whatever it is that's gonna take you out of here. Okay, seriously, they're not even trying to let anybody under the dementia umbrella apply. It's like all of the isms. It is racism, sexism, bigotryism, whatever. This is disease bigotry. Did y'all know that? Like, I didn't even know that you could have classism, and sexism and all the isms in diseases. Seriously, are we about to be hypocritical and we're gonna choose who can decide to die. I'm sorry, your disease, you're not good enough to decide to die. Wow, really, I'm over here, snatching their yard. I'm snatching there and I would do the thot pop, but I think that might hurt some people's ears and I also can't do it very well. So I'm not gonna do that. Whatever like go watch The Housewives of Atlanta, or look it up on YouTube and do thought T H O T pop with the lips and you will see what I wish I could have done because it is disgusting. How are you going to discriminate on which disease recipient gets to decide when they want to die? What's the most ridiculous in this entire scenario is that Amy's husband technically died sooner than he wanted to in order to fit the parameters. Because in Zurich, you needed to have a level of cognition and awareness, that really meant he might have had a couple of months left or maybe even a year that he would have enjoyed living in being with his family. But technically, if he had waited any longer, he would not have had enough brain power to say, Yep, I'm me. I'm Brian. I'm ready to like, cut my lights out forever qnd I can go ahead and take this sip of this lethal poison and hold my wife's hand and I want to listen to Beethoven, right? Isn't that jacked up, though? I think y'all nodding your heads with me. I started thinking about Zetty and I was like, wow, she already doesn't qualify for Switzerland, even. I am sure that they would say oh, yeah, you know, if she doesn't know what day it is, what season we're in, what state we're in, she can't righteously say I'm ready to die and that's appropriate, but wow. Why didn't y'all tell me this earlier? Nobody said when my mom was diagnosed, "hey, just so you know, if you think that she might not want to live until the wheels fall off, so to speak, and to the point where she can't walk or talk or feed herself and she's laying in the bed like a vegetable. If that is not her goa you all need to go see an attorney and write up some new paperwork, or maybe go to Switzerland in a month." Like nobody even said that, that right to live might be taking from her, or shall I say right to that will be taken from her. Or maybe I need to go move to Oregon because shout out to Oregon who knew other than giving us Nike. Oregon also was the first state in the United States to codify make legal, dying with dignity. In the United States, Dr. Kevorkian made news and got in trouble a bunch with assisting a lady who wanted to die. It was called assisted suicide at the time, and it was a big mess. Morally should he do it? Was he breaking his hippocratic oath to help a person stay alive? But he said "hey she wants to die. She doesn't want to stay here anymore." And they thought, well, but should you help her or should she have to take her own life in another way? And the doctor at the time thought wow, why would you want her have to like shoot herself or cut herself and do something painful when I could just give her some sleeping pills or a solution through a syringe and in a night, night, night, night. Parenting Up family you have to know that your girl J Smiles is hot. I am white flame fire hot. I am being your body hot, I am wasp hot. I am whatever is coming out to you that wants to bite your ankles and make you mad hot. I am Woah! That these are limitations and options that I now don't even have. As a general principle, I do not appreciate options being removed from my palette. I want all the options that are available to any other human to also be available to me. I think that is fair. I know fairness doesn't always rise to the top in this world, but I look for it and I expect fairness to find me. And now I'm clear that Dying with Dignity is not a legal option for my mother. I don't know that she wants to do it, but that ain't the point. What if she does or what if I decide that's what I want for her in a moment where if she has zero cognitive ability abilities, but I can tell or I believe that she's in pain and I have full rights over her my power of attorney or what have you and I'm like man she is really hurting. And you're telling me that y'all just gonna let her sit there and keep hurting and I don't have anything to say or do about it. Because somebody in Congress or a state legislator, who never met my mama, who don't know nothing about Alzheimer's and the pain that it rains down, wrote some stupid law with some bad intentions, likely out of ignorance, because the awareness is laughable when it comes to this disease. Enough of my ranting. So what can we do about this? Well, this points out what I started talking about in season one, episode 14, about legislation, and really pushing Congress in the United States or your state legislators or wherever it is you live in the world, going to your lawmakers and letting them know what it is you would like them to improve. Also, in season two, episode 15, we talked about advocacy, advocating for your LO, not expecting that the doctors or nurses or hospitals know what's best, or even know what it is that's missing in the system. As the caregivers we know what we need. They only know what the disease is and is not. They don't know how it impacts the daily lives of the family members, or those who are suffering with the disease. They're not around everyday figuring out what's going on, we are. There's a horrible gap that exist in the dignity with dying options, and those who have dementia, Alzheimer's, and things like that. Because currently, if you choose to die on your own terms, with medical intervention, you're going to have to die why you still have cognitive awareness and man that means you get not here little earlier, then you have to. According to J smiles, who has no medical degree, but I'm telling you, if you are clear enough to say, yep, this is my name, my birthday, this is where I live, this is the date and the time, and the Earth's hemispheres on this axis, and the sun just went up and the moon's about to come out and snowflakes are cold. Hell, if you can say all that you got probably a year or two left to live up that will be enjoyable to you, and those you love. Why the hell are we making them have to die that fast in order just to not end up a vegetable or invalid, drooling and licking the wall? I know that's a little bit extreme, but that's what has to happen, like why it's had to be either or ain't nothing in the middle. Like, can't we find some in the middle of the road for our LOs and in steps and organization call endoflifechoice.org. They give us a few options. They say one thing is while your LO is a very coherent early after the diagnosis of Alzheimer's, write an advanced directive to voluntarily stopped eating and drinking. I never even thought of that. I never heard of that, but that is very specific. If at a certain period in time, your LO has said I want to stop eating and drinking then obviously, any of us if you stop eating or drinking, you're not going to be here too long. And you're to stop eating and drinking, the VSED, D Victor Sam, elephant dog, which means it is a supervised fasting that ends a person's life in two to three weeks; hat's a medical term. I don't know anything about up that however, those in hospice and palliative care should be very aware, a standard nurse or doctor, according to endoflifechoice.org may not know. Okay, so be prepared don't just go running around talking about this at any hospital or to your family member who may have been a nurse 30 years ago, they may not have heard of it. That's why we are the advocates for our LO but that's a big deal. Your LO could write this down. This is a way that your LO can be on earth through their cognitive days, but not until they really have become one with the mattress if you know what I mean. Seniorsmatter.com does a great job breaking down Dying with Dignity, what you have to prove, who it can really benefit, and who it leaves behind. It breaks my heart how much it leaves dementia sufferers behind. I mean do they really need discrimination in the law? Hiyiyah, but it exists so we got to be prepared. I didn't see this written anywhere, suggested anywhere on a podcast, or from a medical legal expert, this is strictly J Smiles talking. I think I'm about to go add to my own advanced directive and to my will- should I get Alzheimer's, should I get anything that causes cognitive decline this is how far I want that thing to go. And this is when I want y'all to stop feeding my but, stop feed my butt and given me liquid because this is where I don't want to be here no more. If it is written and you have done said paperwork and had it witnessed while you were cognitively sound whoever's around caring for you and loving on you has a solid day in court to push through how it is you want to leave this earth. Everybody is so busy running around but I want to live on my own terms, "I am woman hear me roar and dudes all like you know grabbing their mother jewels or family jewels or whatever I'm man, this what I'm gonna do this how I'm living respect me." A great deal of respect to is how you let me leave this space. Don't keep me here for 20 years if I don't want to be here. But yo we also owe it to the people that we love to make it easy on them. Write it down, write it down better yet leave a voice note so much technology now there is no reason why they can't be a whole video of you looking at the camera saying what it is you want. Have a video last will and testament advance directive that goes along with the paper. Hey, act out I might just do that , this is a whole J Smiles skit. If I get to the point where I'm drooling like this, (noise) start the non eating and drinking that next day count from now my two weeks get all my family come back and kiss me and hug me because I'm out of there. It's very personal. Everyone should be able to do it on their terms, but you got to know what those terms are. Honestly, knowing Zetty's preferences has made my strategy and caregiving much easier emotionally. Now physically and spiritually it is hell watching my mom decline, especially watching her lose her mind, because that was the strongest thing on her. The lady was brilliant period end of story. But she always told me keep me with you. I don't care if we live in the back of a U haul truck, sleeping in an alley. I don't care if my environment is plush. I want to be where you are. My spirit and my soul will be most comfortable if I am where you are. I don't care if I am losing my mind or dying, regardless of what the doctors say you keep me with you. Do you hear what I'm saying to you JG? Yes, I do. So while that was never written down anywhere, she started telling me that when I was in middle school, and it continued every time, someone close to us died, and there was trepidation over what to do with the parent, or the spouse that was left. My mom will look at me and say you remember, something happens to your father first. I was like, yep, you go with me even if we're living in a tent. She said yes, I was like, all right, that was clear. Yep, dying with dignity has a little bit of disease discrimination in it. Do what you can to make your LOs end of life clear, concise, and go the way your LO would want, the way you want. Remove as much confusion as you can now, thank me later.

Do you have a comment about today's episode? Is there a topic that I've never covered that you want me to handle in a future episode? Cool, text of purple heart two, +14047371449? Of course, I'm gonna put that in the show notes.

There Snuggle Up- Number 1- Plan how you want the end to look for your LO. If your LO can still help you create a strategy, that's even better, but if not, start thinking it through. Are there other family members you need to consider? Do so, but if it's all on you put it together. Do you want to involve hospice, some other type of palliative care treatment? Don't let it sneak up on you have it written down. Determine what resources you will need, what organizations do you want to call on, will it be other family members, neighbors, church services? Don't wait until you need that, emotionally you will be too drained. Trust me on that. Even if you think it's years away, have the plan in place. Number 2- Be prepared to teach and train the medical team or the legal team that you're using on what your needs are. They may not know about the end of life choices that you want to use. Because Alzheimer's doesn't really have a seat at the table legislatively, you may have to create documents that they've never seen before but it doesn't mean you're wrong. It doesn't mean that what you're doing is illegal. It means that you're an advocate and that you're an innovator what you're doing will make it easier for another family for another caregiver Number 3- Breath, relax! Planning this in advance ain't gonna make your LO die sooner. Why do we do that? I don't want to talk about it. I don't want to talk about dying or death, they just go happen faster. No, it ain't! Get your stuff in order to take the pressure off of you. While you at it, maybe think through how you want the end to look for yourself whether you have Alzheimer's or not. How do you want your end to look? Do you want to be sitting in a bubble bath with strawberries or you want to be at the beach? Tell the people around you. Write it down somewhere. Don't leave it up for shits and giggles, nope.

We keep the Parenting Up caregiving content coming on YouTube, Facebook and Instagram. As well go to www. jsmilescomedy.com and sign up or Parenting Up newsletters. That's it for now, thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends, and truth. Pretty pretty please with sugar on top share and review it too. I'm a comedian, Alzheimer's is heavy, but we ain't gotta be