Protection or Paranoia: Sharing Your LO's ALZ Diagnosis

Zetty has always been extraordinarily popular. Even as a young kid, she had that rare knack of a nerd who had friends. She was voted most popular, Miss Freshman, Homecoming Court, all that kind of stuff. As Alzheimer's progressed, naturally she was not out and about as much. She retired and people didn't see her. I started getting text messages, emails, social media DMS, "Hey, Jay. I was looking for your mom after church. I normally see her on Saturdays at the 530 mass. I haven't seen her for a few weeks. Can you please give her my number? I've been calling her cell phone, but a voicemail is full." An email, "Hi, Jay. This is Miss Jackson, I worked for your mom about 20 years ago at the state of Alabama. Blah, blah, blah, blah, blah. Can you please give me her new number because her cell phone is full. But I know she would love to hear from me. We go way back." I'm sorry, Miss Jackson. I am for real! What am I supposed to say? Then there's the DM messages, "Hey, Jay, you don't know me. And I'm pretty sure your mother will remember me, but I have a quick question to ask her. I stopped by her office and they were closed, but she's the best around when it comes to utility regulatory consulting. If you could just ask her this question or get her to call me. We went to high school together." Flowers coming to the house, greeting cards, birthday messages, on and on. Smoke signals coming through distant relatives, family friends. Hey, Jay, your mamma's all bosses second cousin's mistress said they used to work for your mom and they really have been trying to get in touch with her. But every cell phone number and email hasn't worked. They're worried about her. Can you tell us anything or let us know what's going on? They're accustomed to being able to find her. Yvette Smiley Smith is a fixture at the annual Martin Luther King Jr. Day parade. And certainly at the women of the universe, yada yada, blah, blah. Y'all what am I supposed to do? My mom is not around because she has Alzheimer's, is that what I'm supposed to write back in a little post it note, hey, everybody in the world my mama has to Alzheimer's. That's why you don't see her. And if you really want me to answer your little email and your little DMS she don't know you no more Ms. Jackson. Parenting Up is the caregiving adventures with comedian J Smiles. It's the intense journey of unexpected you 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. Caregiver newbies,OGs, and 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?

Today's episode- Protection or Paranoia, Sharing Your LO's ALZ.

Don't worry Parenting Up family I did not say anything that crass, but boy did I think it. I don't know about you, but the second most stressful thing to hearing that my mom had Alzheimer's was deciding when to tell other people that she had Alzheimer's. And who to tell, who deserves to know this very precious, very private information. And when in the world am I suppose to let the cat out of the bag unlike other life altering things, positive or negative, buying a house, having a baby, getting married, getting divorced, there just has not been enough literature or examples as to how do you tell somebody that you're ello has this degenerative cognitive disease? The tricky part is no one understands it. There's such a stigma around Alzheimer's still, that we don't know what to say, right? It's so scary. The doctors don't really understand it. Our ellos don't understand it. Hell, we don't understand. So how do we expect that whoever we're going to share this with will digest it and then handle our ellos properly. Anywho, let's unpack this thing. I found out from personal experience that many caregivers choose not to tell for a very long time and by longtime I mean, months. I'm not going to try to get statistical on you, but let's just say a bunch of months and everyone has a different reason. I've read a lot of literature, I've interviewed a lot of caregivers, and I've been an advisor and confidant to many more, then I've lived it. Three things keep coming up as themes in my world that describe why family caregivers lean into the secrecy of my ello has Alzheimer's and I'm not about to tell anyone yet. We cloak it under protection, privacy, or paranoia, that's what J Smiles believes. I did not get this from any expert.com thing. Protection- we think often that we are protecting our elbow. Maybe we are maybe we are not. But we hype ourselves up into that. We don't want them to be embarrassed. Maybe we don't want to be embarrassed. But because of that stigma that Alzheimer's is a mental illness with the air quotes we're crazy, or some debilitating, unraveling of behavior, that's going to change how our ello is treated, we don't want to tell. We don't want people to stop inviting them to events, or to start having pity on them and treat them like a child. Or we don't want them to get fired from their jobs or to maybe have their boyfriend or girlfriend or spouse want to get a divorce or put them out the house. So we're going to protect them. We're not going to tell anyone. But are we really protecting them? That's what my question is to everybody in the Parenting Up family. Or is that more of a form of denial as the family caregiver as if this Alzheimer's is going to go away or we're going to be able to hide it and it won't impact their lives ultimately, anyway. Maybe your ello says to you, I don't want to tell anyone, please help me keep it a secret. I don't want the sympathy, I don't want to be a burden. Man, if I had a nickel for every time that has been shared with me, J smiles, I don't want to be a burden therefore, I don't want to tell anyone. I offer anyone who can hear this now, the opposite of that, I firmly believe that it's more of a burden when people who are going to be around your elbow, frequently, are left in the dark. Because they are going to be able to tell, they can tell a difference in your ello's speech, behavior, patterns, walking, conversation, eating. And if they're left trying to determine why your ello is late to functions, why they may not be as engaging, or as loving, or as touchy feely, or they may not be wanting to consume as much of dinner as they used to, or stay on the phone as long, that could be more burdensome, worrisome, or offensive. So just think about those kinds of things. Privacy- often for our ellos, we think you know what, it's none of their damn business. I'm not telling Mr. Williams next door, because it's not his business and maybe it's not. There's nothing wrong with a reasonable amount of privacy. Some people are just nosy and they're gossipy and they want to start mess. And they may want to actually do harm to your ello or to you. You're going to have to stay prayed up and meditate and let intuition guide you. Because some people do not deserve to know the specifics of your ellos health. When you're considering privacy as your rationale for not telling, I caution you to think about who should fall on that list. I doubt if the entire world should be kept from knowing that your ello has Alzheimer's. If that's what you come up with, then I think you should, you know, relax for a couple of days. Let things settle down, get over your initial shock of what has happened and the information that you've been given, maybe even a week, go on a small vacation, have a glass of wine, go for a jog, and then decide who are the people that are critical to your sanity, and to the sanity and the health of your ello And let them be the ones that can know even though privacy is very important to you. A lot of that will depend upon what your ello's stage of life is, is your ello 50 years old and still working, or are they 85 years old and already retired. As I've stated many times in previous episodes, Zetty was diagnosed with early onset Alzheimer's, a CPA, she was still working, therefore her privacy meter was high. There were professional considerations that we needed to consider until we fully understood her diagnosis, how advanced the disease was, and what she would be able to manage professionally so that her clients and her staff would receive the very best ethical considerations possible. Paranoia- be honest with yourself, potentially talk to a therapist, someone in the clergy, if you are so spiritually inclined. Are you tripping? Are you going too far over and above inside of your own ego? Are you being led by ignorance of the disease, because if you break down the word disease, it is dis ease. You are having a lack of ease because of this diagnosis. And if it is causing you to act outside of yourself with an unnecessary abundance of caution, that's putting you into a paranoid state that you think everyone is out to get your elloor you and harm your ello, or do ugly things and dastardly things; then you are going to need help, potentially medication to get you over the hump of the diagnosis so that you can settle in to this new normal. It will always behoove you to stay fortified in the facts. Know as much as you can about Alzheimer's, understand the disease, the myths, and the truths so that when individuals may talk in error around you, you can correct them. Oftentimes, what makes people uncomfortable, is what they don't understand. We see that in all of the isms- racism, classism, sexism, ageism, discrimination across the board. When you're thinking about who to tell, and maybe who to leave off of the must know list. Start with what would they have to gain or lose by knowing that your ello has this disease. To me, this was very private, very sensitive, yet very special information about my momma. So the people who knew it, it needed to matter to them in a big way, I wanted it to impact the way they would behave around my mom, how they would treat her, how they would treat other people with the disease, how they would donate to Alzheimer's research, how they would change their attitude around Alzheimer's and other dementia related diseases. What I did not do was just go down my contact list letting people know or tell everyone in my mother's friendship circle or professional colleague, circle. Hey, just wanted you know, my mom has Alzheimer's.Absolutely not. That's not how this was going down. Why do you deserve to know? Why should you know? What do you have to gain or lose from it? Is it going to matter to you that you know? How much of a gap is it in your life that Zetty is now missing? If it doesn't really matter to you that you haven't seen or heard from my momma, then you don't have to know that she has Alzheimer's you'll be alright. For transparency, when Zetty was initially diagnosed, I did not believe that there was no cure for Alzheimer's anywhere in the world. I thought, no way, no way that there's zero cure and zero treatment on the hole globe. I said, Ha, I'm going to find it. I have the stamina. I had the tenacity. I know a lot of people. I went to Howard, I went to Stanford, I've lived in Africa, I've lived in Europe, and I've been all over the Far East.; let me go. Initially, I didn't bother to tell everyone I knew about her diagnosis because I thought I could beat it. I thought I'm gonna find somebody in Swaziland, that's what it was at the time, Switzerland, the Serengeti, the Amazon and they're going to give me a special elixir and we're going to stop this thing didn't happen. Once I realized that Alzheimer's was not a game, and that I was going to need help and by help, I meant all hands on deck, anybody that's not in total idiot. out to get me and a monster, please apply within jobs open. These are the kind of questions I asked myself around who I would tell and who I would share my story with. Jay, will it help your lifestyle? The responsibilities that you now have will it ease your responsibilities financially? Your time, your schedule, your stress, who can help in any of those categories? If they can help in those categories, then they can know your mama has Alzheimer's. I don't care if I knew the person one month or 20 years, if the answer was yes, snuggle up, buttercup, you bout to find out. My mood Jay will tell him this person buffer, your mood, your shifts in your patterns, the decisions you are making? Can they help soften the edges just a little bit? Put a little bit of sugar in this sour lemonade. I don't care if I just met this person on an airplane 20 minutes ago, if my intuition is telling me that they can take the edge off, honey baby, you're about to hear this story about my momma having Alzheimer's and you might get a picture of her, my cell phone number, email ,and a security code to my house alarm. Listen I had to get rid of myself too, Jay, do you really think that Zetty's closest confidants those who were around her frequently didn't notice anything? You weren't living in Montgomery Jay, surely some of her colleagues or staff members or church members likely noticed something. They may not have thought it was a big deal, but they probably picked up on something. So you may not shock them as much as you think when you give them the ALZ news. They're not gonna like it, but hell, you may be the one who shocked everybody else may say oh well, you know what? That's sad to hear, but you know, I remember that time. That thought ease a bit of the stress off of my chest. Thought well you know perhaps they won't take it that badly Jay. I was surprised by how hard it was for me to decide when to tell. Who, who to tell actually kind of came fairly easy. And why I needed to tell was fairly intuitive too, but that when oh my goodness in the pit of my stomach, like okay, tomorrow, next month, next week. oh my goodness! Okay J Smiles, so what do you think now about when to tell of your ello's ALZ? HA, I never thought you'd ask, after a positive diagnosis from a neurologist from a neurologist, who has actually said your ello has Alzheimer's, or some other dementia related disease, not before that. Anything before that, you're just guessing and it's not really worth claiming it and running all around the town and telling it, in my opinion. The other parameter is, if and when your ello can't fake it anymore. They're trying to go to the bathroom in their own house, and they end up in the laundry room, people are going to notice that. They're trying to drive, they turn the car on and get back out the car and they don't go anywhere. Take the keys, everybody notices that they're no longer driving, it's time to say something. But if your ello is maintaining enough independence to live alone maybe you keep your lips shut. That's a personal preference, that's your call. The experts at mayoclinic.org say we should consider the relationship to our ello, when deciding the tone and tenor of the conversation about Alzheimer's. Are we about to tell it to a child, a family member of friend or co-worker someone from church, for instance, if we're telling a child that our ello has Alzheimer's, they suggest saying, hey grandmama has a sick brain. So she has a really, really bad headache and she's not going to really remember our names as much anymore. So we have to talk quietly and slowly. If it is an adult that frequently visits your ello, and has had a lot of access to their home in the past, the suggestion is that you set very clear boundaries, parameters, and expectations around how those visits will go in the future. What time of day would be best to visit? How long the visits will go? What topics they should cover? Are there certain topics they should never talk about again? Can they watch TV? Should they only read magazines? Are there certain words that should be limited? Are there certain foods they should no longer bring over for your ello to eat? Can they take your ello out to go to lunch or is that not a good idea? It is better to remove variables than to leave it up for speculation. Parenting Up family, it sucks finding out that your ello has Alzheimer's, PERIOD! There's no way around it. And then it sucks again, actually having the burden of passing that awful news on to other people. And these are probably people that you like, or you care about, or at least you believe your ello cares about them are used to like. Don't get me started on that. Let's be honest, if you're even considering telling a person about your ello's Alzheimer's diagnosis, that person matters in your sphere. We have to be prepared about how they're going to respond. I've had people break down crying on me about Zetty. I'm consoling them. I'm thinking, Well, it's my mama. I'm sorry. Are you really having a panic attack? And you haven't even seen her in two years. Okay, so I pat your back now. All right, you need a tissue, I hope you can pull it together. You gotta be ready for them to make suggestions. Have you got a second opinion? Are you sure? Have you done everything you can. Maybe she's just depressed. Maybe it's something she ate, she could just be getting older. Maybe it's the pandemic, maybe it's diabetes. After you get through listening to their forms of denial, you still have to settle them into Hey, my ello has Alzheimer's. I wanted you to know, because of your importance in their life, or in my life in our lives. Once you decide who you're telling, when you're going to tell them, why you're going to tell them, you also have the right to let them know- "Hey, don't do take it upon yourself to go and tell the rest of the neighborhood or the remaining cousins. I'm going to do it. I told you please give me the courtesy of telling others that we know or love in common in my own time, and in my own way. This is very personal, and is very sensitive. And if I hear that you told anyone else you're going to break my trust. And I'm not going to keep you informed and up to date with how my ello is progressing." I, J Smiles believe you have the right to handle it like that. I know I did like that was that. There are some people who got the first bit of diagnosis with Zetty who have since been what snip, snap, slow blammo cut off from subsequent updates on her health because they broke the rules. Ask your ello if they would like for you to share their diagnosis. If they're unable to give you a response, be very thoughtful about it. I'm sure you know your ello well enough. Think back 5, 10, 15 years previously, do they have the kind of personality where they would prefer their close friends or family members or neighbors to know that they are going through the fight of their lives? Would they want people to know and be able to support and love on them and hold their hands and put lotion on their feet or not? Or would they rather do it in isolation with only one or two people around? What is their basic personality, once you digest all of that, do the best you can to honor it. Take a deep breath and let it go. Whenever you decide to share it, recognize that it will be a weight off because the more you talk about your ello's diagnosis, the more freedom you will have. You will recognize that there will be a, it will be cathartic for you. You will find companionship in others, other caregivers, people with like stories, there will just be support from the universe, generally speaking, from the plight that you are having in your human experience as a family caregiver, and you deserve that. You deserve to be seen, to be supported, to be loved on to be celebrated. So figure out when and how and where and to whom you can share your ello' diagnosis.

The Snuggle Up- Number one, Alzheimer's is one of the most feared diseases in the world, why? Because of the stigma attached to. There's this mental health discrimination component. There are jokes about it. There's a ignorance about the disease that still exist. There are studies and statistics that say seniors would rather have cancer, a heart attack or stroke, HIV or AIDS than to have Alzheimer's. Number two, don't rush to tell the whole world about your ello's Alzheimer's diagnosis. Be thoughtful, be intentional. Who needs to know, who deserves to know, who will actually gain something by knowing, who will benefit you and your ello by knowing, who will benefit the world of Alzheimer's research in the battle for cure by knowing? Number three, if you find yourself continuously shying away from the truth of your ello having Alzheimer's, look in the mirror and ask yourself why. Is it your ego? Are you embarrassed? Do you feel that your ello did something wrong? Are you afraid that you may also get the disease? Are you afraid of retaliation by family members, by your neighborhood, by your job? Seek help, seek counseling, clergy someone professional. That's a burden you should not bear.

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 a purple heart to +1-404-737-1449, of course, I'm gonna put that in the show notes. 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!