A podcast that listens, hears, and offers wisdom & hope from caregivers who have lived the experience.

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Finding A Little Peace of Mind

Finding A Little Peace of Mind

00:00:02 – 00:05:19

Welcome to fading memories, a podcast with advice, wisdom, and hope from caregivers who have lived the experience and survived to tell the tale. Think of us as your caregiver, best friend. When I learned that despite eating as healthy as possible, we can still have undernourished brains, I was frustrated. I also live in a farming community, so I’m aware that our food isn’t grown as well as we need. Learning about neuro reserves releve and how its formulated to fix this problem convinced me to give them a try. Now I know many of you are skeptical as was I. However, I know it’s working because of one simple change. My sweet tooth is gone. I didn’t expect that and it’s not something other users have commented on, but here’s some truth. My brain always wanted something sweet. Now fruit usually did the trick, but not always. One bad night’s sleep would fire up my sugar cravings so much they were almost impossible to ignore. You ever have your brain screaming for a donut? Well, for me, those days are gone. It’s been about 6 months since I started taking the supplement and I have no regrets. I believe in my results so much that I’m passing on my 15% discount to you. Try it for two or three months and see if you have a miraculous sweet tooth cure, or maybe just better focus and clarity. It’s definitely worth a try. Their link is in the show notes. As of caregiving weren’t full of enough responsibilities, coordinating with others adds an entire layer to an already complicated process. I’m sure you’ve asked yourself if there was an easier way that perhaps you were just overlooking? Today I’d like to introduce you to our little piece of mind, started in honor of a grandma with Alzheimer’s and the sun with autism, their primary focus is creating medical binders and portfolios that help you coordinate with the vast number of people who need to understand each person’s specifics. These portfolios and binders are custom assembled for you and offer unique solutions for keeping your loved ones home as long as possible. By helping you make doctor visits, family coordination and other appointments easier, our little piece of mind helps you have one less thing to worry about on your caregiving journey. With me today is Christina pickerel. She is with our little piece of mind. She has a son with severe autism, and she had a grandmother with Alzheimer’s and she also had a an incident with her mom that jump started our little piece of mind. So we’re bringing that story to you today. So thanks for joining me Christina. Thank you so much. Jennifer. And I am honored to be on your show today. Oh, thank you. So tell me about your caregiving journey and having to neuroatypical family members. There has to be a little more challenging than some of us experience tell us tell us a little about your journey. Well, my journey is been I have been fortunate that I have seen many different scenarios with different family members and through training that I’ve received my son is severely autistic and non verbal. He’s an adult now. And my grandmother was diagnosed with Alzheimer’s and my mom, we were afraid at one point, might have dementia a couple years ago, which, you know, so I’ve kind of been able to use my experience with my son and my training. To create bridges and connections that help, you know, everybody, and my mom and my grandmother, you know, coordinate, you know, whether it be coordination of care, or, you know, making connections for them so that they felt heard and understood and not lost. Yeah, it’s definitely an unfortunate byproduct of our medical system is we have to we have to advocate for ourselves, you know, we have to like learn things that probably we shouldn’t have to learn, but tell us a little bit about what our little piece of mind is all about before we confuse everybody that’s listening to us this afternoon. Well, our little peace of mind creates medical binders and portfolios. For any individual that needs coordination of care over a multitude of caregivers or family members or is at the beginning of a significant diagnosis that impacts their ability to track and organize and care for themselves.

00:05:21 – 00:10:09

Our medical binders are designed as a basic current for an out record of your working medical documents. They they have tracking logs. They have medicines, non prescription medicines. They have just if you can think about anything that you need to track are a little peace of mind will put a binder together to make that happen. And our portfolios are designed, so that they create a storybook about the loved one meeting there. For my son, we create, you know, likes and dislikes and behavior patterns and stories about what his life is like outside of school or outside of therapy so that they get a clear picture and not just a piece of paper with a list of diagnosis for my grandmother and for other clients that I’ve worked with. It’s a way to make them at ease. And to demonstrate that, you know, you would put likes and dislikes and conversation starters in that. Portfolio that a caregiver that has no family history with the family would be able to have meaningful conversation with the one they’re caring for. That’s actually my favorite movie. Yeah, well that’s actually really important. And it helps maybe friends or distant family members that don’t see the loved one as frequently as others. It helps them be a better care partner. You know, you’re not just like uptight and nervous and which I’m sure you know is not the best way to approach somebody who’s got a brain disease. I had to always approach my mom just happy and friendly and smiley. There’s times I felt like a clown, but you know, that way she knew it was like, oh, something good is gonna happen instead of, oh, why is this chicken my face? Yeah, I have a couple stories that, you know, might be interesting to your viewers. One of them was a story about my grandmother when she had lost the ability to speak. And they had to transfer to the nursing home. I went up for a week and spent a weekend with her at the nursing home to give my parents and my dad’s sisters a break from being there. We didn’t want her alone. And I, at mealtime, the first meal time, there was a controversy with her, you know, trying to put food under the table. And it finally dawned on me as they’re trying to get her to stop. Wait a minute. She is in the era in her mind. She’s feeding kitty Todd, her cat. And as soon as I was able to communicate that with the staff, it was a simple matter of giving her a paper played at meal time. No more conflict, no more anybody getting upset and she was able to feed kitty Tom. And that made her happy. So that’s those are the things that we try to communicate through the portfolio. My dad with the binder, my mom was over medicated and we didn’t realize it and we thought that she might be at the beginning of dementia. And that’s kind of what kicked my button here to start peace of mind. Is I went up and I created her medical binder for my dad. He had no idea what medicine. He had no clue what the allergy he knew she had a list, but didn’t know what they were. And I knew that mom, I knew a lot of it, and then I knew where she kept lift. So I went up and I could pile that all into a medical binder and we’re very blessed that it wasn’t dementia that it was just a simple medication.

00:10:10 – 00:15:06

But that binder really helped my dad get through and communicate with the doctors and find the right balance. Well, and that also could have prevented them from assuming she was having dementia and Medicaid in her with even more stuff, which is just yeah. It was it gave the neurologist that the emergency room and, you know, the psychologist that we’re testing her, kind of a clear picture of what all she was taking. And how to make those determinations. It was just a matter of waiting for some of them. Or, you know, treating dementia. So it was it was a great resource for my dad. I had a conversation for another episode and I don’t remember where you two guys are in the rotation with each other and hurt. We were talking about healthcare advocacy. And she said, you know, patient charts are not they don’t read like a book. They don’t. They’re not, she didn’t say she did kind of reference that they’re kind of a mess. I think it’s because you’ve got this report, the doctor’s notes. It’s not, I don’t think it’s easy to organize them. I’m a super organized person and when I think about what is probably in a medical chart, I don’t think it’d be very easy to organize them ’cause that was one of my frustrations was having to constantly remind my mom’s general physician and his staff, my mom has advanced Alzheimer’s. Stop asking us to do stuff that’s not gonna happen. Like, oh, that just makes me insane. And so go ahead. Oh, what I was going to say is you’re on the right track. One of the other things that we found is how many times our doctors on different my charts or portals, not all of the doctors use the same software. And so they don’t communicate, which means you’re going into one portal for one thing and another portal for the other and trying to tell this doctor, that doctor and our binders kind of think them together. You know, it is you’re working medical history right there at your fingertips. It is, you know, quick references. In the case of an emergency with a paramedic, it is a quick reference if you’ve forgotten the doctor’s number. We even once we get that information, you know, what doctor and their phone number will reach out to the doctor and say, hey, you know, what’s your office hours and, you know, so you don’t have to do that research and we’ll put it in the binder. And so you have the doctor’s name and his specialty and his contact information and then it’s his office closed from this point to this point. And so that’s just kind of one of the things that we do to make your life easier. You know, just give us the doctor and the number and we’ll figure that all out for you. And it’s all printed right there for easy reference. Well, for those of us who’ve had those emergency room runs, we know that unfortunately, your first instinct is not, oh, let me gather all the medical documents they might need in the emergency room. Now, that generally isn’t in the top 5 things that you’re thinking about. So it’s very handy to have a binder like this. What has been your experience because we’ve already demonstrated why all of us should do this. Regardless, I’m a healthy person. My husband’s on blood thinners. That’s about the only issue he’s got, but it’s, you know, it would be helpful for him to for his doctors or emergency room to know what he’s on in case we’re traveling and we don’t end up in our health system this is finger quotes on health. You know, so it’s not just for people who have like an illness. But what’s been your experience like do you hand the doctor the binder or is it mostly so you have references to answer their questions or combination? My experience with my son personally, recently, as he’s made the transition from pediatric to adult doctors, is that every new doctor has a list of paperwork a mile long for you to fill out.

00:15:07 – 00:20:00

I can I can walk into that doctor and open that binder and say, what are you looking for? And I’ll say, I need a I need a list of all his meds, prescription, non prescription. And I’ll hand them the piece of paper and they can scan it right in. Well, I need to know his general physician and I need to know who’s prescribing what here’s the piece of paper that says it all. Well, we need to know the baseline. It’s all right there. It’s all in your binder. And the binders are 100% customized to client me from the most basic, you know, you have to start tracking your sugar, your free buy diabetic. We have logs. You know, that help you organize that. To the advanced diabetes that needs to track what doses of insulin. We have those logs. I’m quite familiar with that. My dad had diabetes. So one of the things we pride out ourselves on is if we don’t have exactly what you need in, you know, in our little bag of tricks, we will create it for you. Makes sense. We’ll work with you. We will work with you to really say, what are you trying to track? And we’ll create that log and that document that you can easily flip to that section and track what you need to track. It’s unfortunate, we have to do that, but it’s not going to change anytime soon. So we’ll just have to get past the fact that, you know, we’re having to do maybe 25% of the work to help the doctor, but we’re going to have a better outcome if we do that hopefully. It’s definitely you’re setting yourself up for a better outcome. But you know, like most of my listeners know that I found navigating the healthcare system with my mom to just almost be more trouble than it was worth, especially in the last year of her life because her general physician, the original one left the practice was a multi doctor practice, and we had this very nice personable younger doctor, you know, I liked him at first, but after a while, I just, I got this real serious vibe that he thought or the vibe I got felt to me. Like, I can’t fix her. I can’t care her, why are you here? And there was also days when I just felt like completely disrespected that I was just, I was just the driver, you know, I was just, I was just like the helper, not the daughter, not the healthcare proxy. It was so frustrating. But what advice do you have as an ass, you want advice do you have to for caregivers to kind of make this process you’re obviously the binders are going to go a long way because you’re not now scrambling for a piece of information that is either not in your brain or maybe not in your phone or but what other advice might you have for caregivers? So one of the things that we like to really include in our products are pictures. I have found with my son. When he makes a transition or a new doctor or anything, they get a diagnosis. And that’s all they get. They get a piece of paper that is very in what’s the word I’m looking for is very generic just welcome. It’s very generic. It’s just, you know, it’s clinical. Well, with the binder than the portfolios, we put a human factor back into that with this. And we take the focus off of the diagnosis and try to switch the focus to connecting with them and showing what they can do, not necessarily what they can. That’s actually a really good idea because my mom walked with no aids until she fell and broke her leg, which was the last straw for her body as the pandemic started. And she spoke in full sentences with English words. There was no context. So it was like reading a sentence out of the middle of a story. And you understood the sentence, but you didn’t really understand the sentence. And it was very difficult for somebody that didn’t deal with her regularly to understand that. I mean, it’s almost hard to explain much less understand. I’m explaining it to you. You’ve experienced it through your grandmother and you know, so you you could probably wrap your head around it a little bit better than most doctors do. One of these days I do a thought experiment of actually trying to craft a sentence that makes sense that doesn’t make sense.

00:20:01 – 00:25:03

You know, in all my spare time, I’ll figure out how to mimic what she was saying. So that, you know, knowing that it could be very useful for the doctor because this general physician not having, you know, hardly any training in Alzheimer’s, which is not his fault. It’s just, that’s how the system is. He didn’t know that it didn’t make any sense. Because he’d ask her questions, which I didn’t mind him asking her questions. I minded that he never apparently. I never felt like he was actually listening to me. Her neurologist would look at my mom and ask a question, but it was like her ear was like a cat or a dog, turned towards me so that I could just respond correctly, but my mom felt seen and heard and, you know, at least I’m assuming closer to the end of their life. I don’t think she did care, but it definitely helped, you know, if you’re talking about somebody in the room, they’re sitting there and you’re talking about them. That’s just obnoxiously rude. Alzheimer’s autism, they’re gonna know. My son, you know, a lot of people will write him off because he’s non verbal. And he signs. He writes, he can text at a third grade level, which blows their mind because they don’t get that with that generic list of diagnosis. And they don’t expect him to be a world problem. He is a in love with cruise ship. Loves traveling. You know, he just recently told his dad where he wanted to go on vacation. He wanted to he texted him that he wanted to fly on an airplane to an ocean. To wear an ocean house. An ocean house. Okay. House on the beach. You know, and people would not, you know, by looking at his just his generic diagnosis, information sheet would not expect that. He’s a daredevil, love roller coaster. Oh, I mean, with my grandmother, she loved my dad would always take her to hockey game before she got too far and she loved it. She loved hockey. She loved spending time with my dad. She loved seeing the mascot. You know, just, you know, it was minor league, but, you know, he loved going. And you don’t think of a die, you know, think of somebody exploring those, you know, types of things. And my personal perspective is that with my grandmother, we never treated her like she had a disease. We always try to approach her on a human level. And create the connection. I for one would send flowers every week or once a month from Houston’s Cincinnati. And once she got to the point where she couldn’t make the connection of who they were for, we created photo album with labels. And to enable her to get the cards and things in the mail and say and look at her picture albums and know who was thinking about her and who was reaching out. She felt connected. So I love that story. And I actually backed into creating this podcast because I was looking for ways to connect with my mom to have better visits and to approach her on the human level, like you just mentioned. And I tried all that stuff, and apparently she was much further along than I was aware. I had a much bigger learning curve on Alzheimer’s than I thought because my dad was a huge buffer. He never wanted us girls to help, which is not smart. Many of my listeners have heard all those stories. I won’t belabor them. But I would take albums and it would just be like, eh, I don’t know these people. And when you look at me and I realized for most people, most people know what I look like because my pictures everywhere, but my sister looks more like you. I’m blond, pale, not super skinny. Thankfully not super overweight anymore. My sister’s always been much skinnier dark brown hair, all of complexion skin and chocolate brown eyes. If we stood next to each other, you would not know we were we were related until we said we are sisters and here’s where we have resemblance. It’s like the nose and the mouth and the chin. And once we point it out, you’ll be like, oh, yeah, okay. That’s about the only thing we have in common in the story. And so what I would take the photo albums and there’s a blond child and a brunette child, and my mom is freaking clueless as to who is like, I would say, is this Jennifer? Oh, I don’t know.

00:25:03 – 00:30:03

Okay, is that when Jeanette? You know, or and sometimes she’d be in the picture and she still wouldn’t recognize it. And I was just like, what is this malarkey about bringing the photo album and reminisce about the old times? ’cause I ain’t working either. So I don’t know. Well, if it could have been her visual processing, but it was just very frustrating. But go ahead because then I’m going to ask my question. Yeah, we actually found that with my grandmother. He had a very specific picture in her head. Depending on what state of what somebody was supposed to look like. And I remember sitting in a car with her one day in the front seat driving and she looked at my mom in the backseat. You know I haven’t seen Chrissy in a while. She always and it just broke my heart because I’m literally in the car with her, but I figured out the man. But she was picturing me as a 17 year old, not late 30. So then we decided that now book. You know, my mom and I created what we call the vine and now book. So depending on where she thought we were, she would see the picture of what her mind was picturing with the picture of what we look like today. And my mom and I kind of worked together to create that for the grandkids and the great grandkids. My earbuds falling out sorry. Those things do that. I suspected that my mom didn’t recognize me as the oldest daughter because I had lost a hundred pounds, thankfully, ten ish years later. Still have 70 of it is gone. Yeah, me. Gotta work on the other 30 again, but that’s okay. It’s much better than a hundred. So as a 40 something year old woman, I weighed 250 pounds. I’m 5 foot two, so guys can all gas. But that thought, and then as a 50 year old or in my 50s, my birthday is coming up real close, my husband was harassed me about being a senior citizen getting discounts and I pointed out that now you have to be 65 for discounts and low splits. Which makes me feel better because I don’t feel old enough for senior discounts. She had no clue. I mean, what was in her mind was this younger, much heavier person. And I confirmed that she did not remember our relationship, the first November that she was in memory care, they had a family harvest celebration for the memory care families on my actual birthday. So I went and she was like, oh, what are you doing here? And I said, oh, well, they’re having a party today. I said, it’s a special day today. It’s November 17th. Do you know why that’s special? No. Okay. Here it comes. Well, it’s my birthday, and they’re having a party for my birthday. Oh, really? I’m like, yep, that’s what I thought. She doesn’t have a clue who I am. She thought I was her best friend. And you know what? I had no issues with that whatsoever. And I think it helped it didn’t break my heart because I suspected because sometimes I’d look in the mirror and go, wow, I don’t look like the person I looked like 5 years ago. So that was much easier for me than many people, but I love how you put it because I know that’s a really hard devastating thing for people to accept. And the way you worded it was, I think it will help people. I really hope it does. But then and now, now and then pictures, I’ve done almost 200 of these conversations and nobody’s ever suggested that. So there’s always something new to learn. But what other activities to do do with grandma and I don’t know if it translates as well with your son because obviously autism and Alzheimer’s are not sort of similar, but not really. I mean, honestly, it was more so about taking things in her pace and it her level of engagement. And we would decide when I would come visit, you know, whether she knew who I was or made the connection or not. I kind of let her guide the conversation. And kind of figure out where she was in history or in her point in life and I would talk about things, you know, in different stages of her life from me growing up. Whether it be when she lived on the river or whether it be when we got their first house from a trailer in the 70s. I was able to my grandmother was very young when I was born. So I was almost like a daughter in age. And my aunt was still in high school when I was born.

00:30:03 – 00:35:02

So the baby sister. So I was able to remember a lot of her history and kind of communicate on her level. And communicate in ways that memories fond memories and things that made her smile. And we do the same with my son. We don’t treat him like he’s disabled. We really in clue him, we’ve never gone on vacation without it. And we never intended to at this point unless he gets too much for me to handle. But, you know, we just we adjust to them. And that is how I’ve always looked at it is just finding ways little way to remind them of those connections with my grandmother, it was strawberries and flowers. She loved anything with strawberry. And I knew whether it be a card with a strawberry on it or, you know, a strawberry scented candle. It would make her smile. So finding those things that she liked. And that she’s always like all her life to make her smile. That was what was important to me. That’s kind of what I did. I would take my mom to the park to watch children, sometimes I had to be careful how I worded that because people that weren’t super familiar with our situation would be like you’re doing, what? Wait a minute, do I need to call the police? Sometimes we go to the swimming pool and watch kids, too. So we were, you know, I joke that we were kind of the old lady creepers. And my mom had dogs like all of my life, she the first year and a half she was in memory care she had her dog after they remodeled and my mom started and I wanna say neglecting but the dog was more of a hindrance than a mental help. And they remodeled and they’re like, well, yeah, we’re getting new carpet and well, and I’m like, oh, do you want me to rehome the dog? Well, or just spit it out. It’s okay. Why is this and I had been grappling with do we rehome the dog or not? Because it was obvious that we would return to mom’s residence and the dog would jump up and down excited. It was a poodle and my listeners also know that the poodle weigh twice, which she should have weighed because she got fit and constantly from my mom and the other residents, which was sweet, but like the dog, the dog needed a lot more than anybody could could give. So we rehome the dog. I had at the time, I still have two golden retrievers, but at the time, before mom passed away, I had three. And I would pick, I would take all three of my golden retrievers in my Honda accord, pick up my mother and we would drive to the dog park. She loved it. She would chit chat with the other the other dog owners, she would watch. It just made her happy. And that’s those are the kind of things I did with my mom because she thought I was her best friend. You know, we always had, you know, these polite conversations. Oh, what have you been up to today? What have you been up to lately? There was very little history to be able to get into. And I think because I think it would have been it would have been helpful to know how to maybe probe that direction with her. I did try and just frustrated her and frustrated me and I’m like, okay, this isn’t working. That’s how I got to the watching the children at the park and taking the dogs to the dog bar. But it’s just it was a challenge. And that’s why I like to ask people that question because other people I mean, everybody’s got a different scenario. I mean, you might be caring for something Alzheimer’s, but as you know, with Alzheimer’s and autism, that’s just a diagnosis. It doesn’t really tell you very much about your person. So I like to give people a hint as to what we could maybe be doing with our loved ones that might help, you know, like the now and then pictures, I’m like smacking my head over here going why didn’t I ever think of that? I’m not photographer, duh. Got thousands of pictures. But, you know, if nobody pointed out, well, it’s very hard when you’re in this scenario emotionally. And mentally just it’s very it can be very overwhelming. And that’s where we want to come in. And help be the, you know, with what I’ve learned from my past and my experience and make, you know, be able to help you make those connections. I mean, in an ideal world, you would start the process upon diagnosis, getting this on paper.

00:35:04 – 00:40:01

But I don’t think it’s ever too late. I think that having being able to make those connections and putting those smiles on my grimace face was worth everything. Definitely. And my son, as well, you know, the joy on his face when, you know, he asks for an airplane and we can get him a schedule and say, okay, in a month, 30 days, and we start our little countdown, you’re going on an airplane. Get out. Everything from visuals to stories, I mean, the possibilities are endless based on the individual needs. That sounds wonderful. So you’ve had a less you’ve had a more challenging journey than some of us. What do you do or what have you done when you were helping with your grandmother to take care of yourself? Because that unfortunately is so easy to neglect and we all know how bad that is. In one way, we worked with everybody was kind of had their piece of puzzle with my grandmother. Shared duty. And I know that’s not always possible. But for me, with my son, I’m the primary caregiver and I’m, you know. I’ll be honest, I do have to remind myself that give yourself a break. It doesn’t have to be perfect. It can wait enjoy the moment. And so even today, I have to remind myself to it’s okay to take a break. I’m very fortunate I have a very supportive friend, family. I have a great caregiver network. And surrounding myself by people that understand hospital and understood the situation with my grandmother. Has been a great comfort. So I really, I try to remember that I don’t have to be perfect. And it’s okay to let your guard down and it’s okay to let those emotions out. Now, how old is your son? He will be 22 in December. That’s wonderful. Now have you? I’m going to tie this into the next question. Have you found that in the 22 years, the stigma of autism has decreased as the people are more aware of it? Because I’m pretty sure I didn’t know about autism 22 years ago. Trying to think. I think the people are aware of the diagnosis. I still think even today because autism is such an umbrella disorder. It’s what I call it umbrella. No two autistic no two Alzheimer’s, no two individuals have the same reaction. And have the same experience. And so while yes, autism is a very well-known diagnosis. Sometimes I think it still misunderstood. With the variety. And as a parent, I have seen so many changes in autism. The one constant is that having each other for support. And being able to be strong enough to be your loved one’s advocate and not being afraid to ask for a second opinion, not being afraid of the word now. Just a different. Ask the question a different way. No does not always mean no. It may be, I don’t understand. The point, the reason I ask that question is my mom had Alzheimer’s for 20 years. So if you go back to the late 90s, when, you know, with my super crystal clear crystal ball and 2020 hindsight, I can see the beginnings of it. And she was in her early 50s when I think it started. And there’s things people do like, you know, we had a family business together. And so I would kind of hover in the background to make sure she didn’t tell client something that somebody else wasn’t aware of. Because sometimes she’d forget to write down the directions. And then guess who got to call the client and try to figure out the least embarrassing way to say, what is it I’m supposed to do for you? ’cause that’s not very professional. And, you know, in the beginning, my dad had coping techniques to help her and I think because he did not do too much.

00:40:01 – 00:45:06

He read a few books, but he didn’t, I mean, he didn’t dive into it like I have, obviously, or, you know, somebody, I had a past photography client whose son was autistic. So I learned a lot through her. She was also educator. So I learned a lot from her, but only on how to deal with her son. But I also saw the struggle, the constant battling. And I’m like, this is ridiculous that this woman who knows the system, the education system still has to fight this hard for her son. And so my thought is I was like, this is the longest wind and wind up to my question, I Paul dies. But I’m hoping that as we learn more about any kind of cognitive disease, autism, Alzheimer’s, you know, lily body, dementia, thankfully, I’m not super aware of any other diseases other than the dimensions and the autisms. That it’ll be easier to put a caregiving support network in place. Like my dad didn’t have that. He didn’t even have that with my sister and I because he didn’t want it. He didn’t think he needed it. And then by the time he needed it, it was too late. He had just burned himself to a crisp and he gave up. So how did you put your caregiving network together 22 years ago and moving forward, I mean, did you just have to just be brave and tell everybody what was going on or that’s kind of where I’m going. It’s like stigma is generally a people a big problem still. Well, and I have a unique background in that area. I before Russell was thought of was a special education major. Due to my husband’s career and being a supportive wife, I did not get my teaching certificate. But I was fortunate that I got to see the flip side. A child with a being on the other side. And I have had mentors throughout my life with Russell. And different support groups. And, you know, I have, I have gone, I can reach out and look for information and support groups. And one of the things I could tell your viewers is every support group is different and you’re not going to collect with everyone of them. You know, it’s all about finding people that are supportive with my son. I have kind of been kicked out of support groups because I’m not looking for a cure. And that was something I had to struggle with for a few years once when you’re faced with this disability diagnosis, Alzheimer’s dementia, you go through a grieving process. And, you know, I was, I guess, because of my training and my background and everything. I didn’t go after a cure. I went after coping skills. And I went after things that would make help my grandmother and my son be happy and content. So that was my my approach to everything was very how can I make their life mean something? And how can I make them feel connected and how can I make them feel valued as even as they’re losing themselves, you know? Russell does not understand that he’s disabled. He’s happy. And he’s giggly, and he’s bubbly and, you know, until the last few months when my grandmother, she did not, we tried to make her not feel like she was losing her mind and losing, you know. Everything tried to counter, you know. We tried to come at it from her level. And I mean, that’s, you know, being their advocate being their person and being their champion. And it does it can and does take a lot out of people, but surrounding yourself with friends and family that are supported and being able to share that with family and friends. The hardest thing I ever thought was telling friends and family that wrestle with us. I thought that was going to be the hardest part of this whole journey. And it wasn’t. Because my family and everything while they may not have understood what was going on with Russell, they loved Russell and we made those efforts to keep him connected with them.

00:45:07 – 00:50:05

You know, whether it be an artwork or drawing or a sticker, you know, he would ripple on a card. You know, we kept him connected. And so having everybody around you accept it and just they may not understand it and it’s okay to ask questions. And I’m an open book, you know, don’t be afraid to ask me why does Russell do this or why did you know my grandmother or my mom do this when she was struggling? But more so how do we overcome that and how do we still make her feel good about herself? And him good about himself. And part of the world and not isolated. No small feat any of those things. Did you ever incorporate Russell in any of grandma’s caregiving because I have seen just amazing. Picture of. She loved seeing her grandchildren? And so every opportunity we had to give get her with the grandkids, you know, with her great grandchildren. She was diagnosed when my daughter was very young. She was about three or four and she’s almost 20 now. And she always called her oat milk grandma. Because she always knew grandma had oatmeal cookies. So she would always show up where if once my grandmother went into the nurse into the assisted living, she always took a meal cookies to her. And grandma made that connection for a long time. That’s actually the smell the taste, the texture, all of those things of just a simple cookie and your daughter’s face. I like is gonna trigger a lot of different neurons I would assume. You know, my little armchair doctoring over here. But I’ve just seen some wonderful interactions with children and older adults living with Alzheimer’s or other form of dementia. And I’m a very big advocate of, you know, don’t try to shield the kids from it, let them ask you questions, explain to them what’s going on, just like you would have to do. I’m sure you had to do it with your daughter about her brother. But it’s like the children are on the same level as the person living with Alzheimer’s at some point, not the entire time. Oh, yeah. And there’s a gal, you know, I’m sure you’ve seen her on Instagram, her niece just kept, quote, tripping and spilling a box of colored pencils and great grandmother would help pick them up. And they’d laugh, and I was funny. You’re such a, and then she’d do it again. She did like three or four times and I thought, ugh. I can’t do that. I just, you know, I mean, kick it out of my head enough to be like that, but that’s where kids can be, you know, she entertained her great grandmother for, you know, ten 15 minutes, maybe it just gives you the adult in charge. Yes. Because animal. My mom I was really surprised once in the memory care there was a family visiting. They had a young child, he looked about two and my daughter was a pretty quiet kid, pretty easygoing. I didn’t have a streaker. And kids at shriek just don’t, you know, after a while, it’s like, okay, put a cork in that, please. It’s just because I’m not accustomed to it. And this kid, you could hear him. Everywhere. And I thought, oh man, this is gonna upset mom because noises like noisy places just to stress her out and she complain about them. So I was, I was watching her and hearing him and then he comes running into the courtyard and I thought, oh boy, this is so I was like, totally on edge. And she like bends down and she starts talking to this little two year old and I was like, oh, that’s really interesting because my sister and I were not shriekers either because I don’t think my mom would have put up with it, which obviously I’m probably wouldn’t have been able to put up with it either if my daughter had done it, so I was just really fascinated and I was like, huh, she had this, you know, two or three minute conversation with this little two year old and I was like, that’s really cool. And, you know, he was fine with it. His parents were fine with it. I mean, they were obviously visiting somebody in the same residence. And, you know, so just taking a breath and I was aware just in case, you know, my mom kind of got crossways and decided that maybe she needed to instruct this child.

00:50:06 – 00:55:04

I would have to intervene. But it was all good. And I’m like, this is really cool. So I was very, you know, it was actually a nice moment to just observe. And once I could take a breath and go, okay, it’s gonna be fine. Then it gave me a little moment of joy too. My mom enjoyed it and it’s like all good and the kid and my mom and the dog did stuff together. It was just fascinating. So before we get too far, sometimes I can talk way too long. Some of my listeners know, do you have any favorite resources that you want to share with the listeners, something that maybe I don’t know besides you guys obviously? Besides us, yes. I actually ran across a very interesting group called extended touch. Extend attention extended tats and I’ll send you their information. They are a caregiver support network. And it’s all at whatever level you want. You can join as a caregiver or as somebody that’s just being, you know, faced with something, and you want to ask real life questions, they are great place, you know, to connect, and you can go on and post your question and see profiles of what people different expertise and knowledge and things and you can go and, you know, that would be like a professional type, you know, environment. For just the every day, your churches, your pastors. Your, you know, for the kids, your PTAs, your, you know. Play groups. You know, for my grandmother, she loved, you know, they would always bring in they were to have a humane society day. And they would bring in animals from the humane society. And all the patients play with the cats and dogs. But yeah, just I have always tried to surround my people myself with people that were supportive. The level of involvement is a personal choice. And, you know, I would force those connections on anyone. I would just, you know, there’s so much information on the network Internet. Facebook and all of that, but there’s and people sometimes worry, what am I finding? Go find those local groups. You know, the support networks that offer the outlook of somebody that’s been through it or is going through it. And that could be your Alzheimer’s society. I mean, we all know the local catheters, but you know, things like Easter seals, a lot of people don’t connect that with community sources. And that’s not one. I mean, I know of them, but I had not. I mean, that ballpark. Yeah. I mean, Google. I mean, literally Google your zip code and your and you will be amazed at what pops up and shows up. You know. And not everything is right for everybody. But that gives you a way to kind of explore without getting involved. Does that make sense? Oh, yeah. It’s like, you get to see what’s available and make maybe a cursory cut to well, I don’t want to do that. But this sounds good. It was kind of like a menu. Like, here’s some options, which do you like? What do you think will suit you? And what suits you right now might not be appropriate three or four years from now and you can go back and revisit the menu of options. So that’s the important thing is to have options yeah, just don’t be free to ask. Don’t be afraid to ask your doctor or your neurologist, you know, don’t be afraid to use your voice. That makes sense. So where can people find you and peace of mind online? So your website linked in the show notes, but where else can we find you guys? Okay.

00:55:05 – 01:00:13

We can find us on Instagram. Our little piece of mind, you can find us on LinkedIn. Our little piece of mind. And Facebook, we have a Facebook group and it’s putting your mind. Wonderful. That is our Facebook group. We try to share what information we’re attempting to build a resource. Group that we’re honoring my grandmother on. We’re calling it 30 guide to resources for, you know. The 50 plus community, you know, not just because I’m almost there too. Don’t forget. I keep thinking. I’ll read something about somebody being 50 and I’m like, oh yeah, I’m 50 wait no, I’m not. I’m 50. Almost 50. But when this comes out, it’ll be 55, so. I think. Well, I am right coming up on that number in the words of my father for life expectancy. You’re on the other side of the hill, dear. I always tell people you’re being with me. My paternal grandmother lived to be a 103. So you’re stuck with me for, you know, another 48 years or so? Get used to it ’cause I’m not going anywhere because there’s just, you know, got things to do, places to see, not going anywhere. My dad says a 102. He says he’s going to be around 202. Unless I do something silly and, you know, take a few years off. Well, nana was starving to be a 105, but I think and this is a slight plug for my frailty is actually a thing episode that’s a really good thing to listen to because frailty is what kind of shortened. I mean, I don’t want to say shortened because a 103 is not short by any stretch of the imagination. But the reason she didn’t get to a 105 is because frailty just it caught up to her and, you know, she only made it to a 103. Yeah, I am a firm believer that you are only as old as you think you are. Yeah. You know, and like I tell you, I’m still in my 30s. Maybe 20 depending on the day. There’s days I feel a 103 in days I’m like, oh my God, how do they get to be 55? My daughter’s birthday is three days before mine. And she’ll be 30 and it’s like, holy crap. How did that all happen, you know? But, hey, it’s just, you know, somebody told me the other day. Oh, I’m not getting any younger. And I said, well, that’s a good thing. It means you didn’t die young. And she was like, that’s a really good way of looking at it. I’m like, it’s all relative. You know, my husband and I were out cycling this morning. We could have gotten hit by a truck and I would have died at 54. That makes me at the end of my life, but I’m not. So, you know, we don’t think those things. We try, I’ve always tried to live my life to the fullest. And just be in the moment. Because nobody knows, especially in this world right now, which pandemic, nobody knows what the future is. So live your life every day to its fullest. Appreciate the little things because they add up. You know, I go outside. And I’m like, my neighbors are quiet. Hallelujah. You know, ’cause we’re in a temporary residence while we’re house hunting. And some of my neighbors need to learn to shut up. That’s going to be a theme for a while. I’m sorry. But, you know, or you go outside, like I planted sunflowers. And now that, you know, we’re at the end of the summer, this is September 7th. When we’re recording this, and all the flowers are pretty much dead, but the birds are having a feast. So I’m you know, even though they’re not terribly pretty anymore, they’re all dry and crispy. You know, listening to the birds just, there’s one bird I thought it has been chomping away for like ten minutes. That is not gonna be a fly away from those flour. And it’s just you are providing their winter feet. Exactly, and I don’t have to go deal with the stupid dead flower. So see, it’s all win win positive, you know? I’ve been eventually, you know, I’ll have to do something with them. But it’s fine. You know what I’m saying? Yeah, it’s just there’s a lot of beauty in the everyday. There’s lots of little beauty. I like to do macro photography so that basically is like, if you think of macro like think of a detachment of microscope to your phone, I have a lens that basically, you know, you can get right up to the petals of a flower and see tiny little flower.

01:00:13 – 01:05:03

You can see all this detail that you I can not see with my naked eyes, maybe some people can. And it’s just amazing how beautiful they are like little tiny half inch around flour that you might walk right by with two golden retrievers, but it’s like, look at that pretty little purple flower. Just stop and you know, there’s so much to appreciate. I find, especially after all of this drama and turmoil, the world has been through in the last, you know, nearly two years or longer, depending on what turmoil you want to not ignore today is it’s just there’s times when it’s like, I have to take a news diet. And when you tune out all that negative, oh my gosh, everything’s bad. And you look at the bird eating the flowers, the pretty little purple flower on your dog walk. Oh, look the dog wants to chase the squirrel and his teeth are chattering. And it’s funny. There’s so much little small joys and beauty. And that is what’s got me through my mom’s Alzheimer’s and the pandemic and my neighbors being loud. It’s all about having a positive perspective. I didn’t use to appreciating a little thing. I didn’t use to. No. And I have a really hard time getting out of my head. I was not. It took a lot of effort, mental effort on my part to be in mom’s reality. And once I was able to do it better, I enjoyed my visits with her even more. And there was one day when she told me her brothers were normal people now, and I thought, huh, okay, good to hear, you know? I’m not so sure I agree with that statement on one brother, but, you know, that’s okay. The other one is still like, you know? And instead of thinking, Jesus forgotten her sister, one brother didn’t visit because he’s about three and a half hours away. And my mom’s the oldest of four. So the second child is the oldest son. He didn’t visit because like I said he’s quite a distance aways. The younger brother and the youngest sibling of the four of them my aunt would go and visit my mom and it just made me feel really sad that she forgot her sister because her sister really, really cared, and not that my uncle didn’t, but, you know, my aunt, she was all there. And when I finally was able to say, it’s okay. I know my aunt was there for mom. And that’s what matters right now. And then I didn’t feel so badly that mom forgot her sister. That’s sad, but, you know, that’s the kind of mind shift that is not always easy, but when we can do it, it’s so much better. And I see people, the younger caregivers on Instagram and stuff that they just do so much better. I’m like, I probably should talk to them more because, you know, just I don’t know if it’s a generational perspective or what, but anyway, this we have more energy. Maybe that’s it. And I was trying to maintain a career and, you know, it’s just the way everything shook out for us was not fun. So, you know, my dad, my dad passed away, and I was told, well, your dad assumed your mom was gonna come live with you and it was like, oh hell, no. My daughter just moved out last month, like literally. My daughter moved out February 1st, my dad died March 2nd. No, I’m ready for, you know, the empty nest to be able to do what I want when I want, where I want not interested in going backwards. So, you know, that’s one of the reasons I advocate for, you know, talking to family, incorporating everybody in the care, so we all know what’s going on. We’re all on the same page as much as humanly possible. That way, there’s not these really unpleasant surprises after somebody dies because that was not cool. But that’s okay. We managed the persevered, and I keep learning from guests like you as I have mentioned, you’re now and then photos just blowing my mind today. And I feel like if I’m still learning things, then you guys are all helping my listeners by providing fantastic information. And I appreciate this conversation today. And I thank you for what you’re doing. What? In the words of my son, thank you inside. I appreciate being given this opportunity to share my stories and share with your listeners, you know, and let them know that they’re not alone. The whole point of this podcast, I try to be a caregiver best friend when it’s two o’clock in the morning and you want to pull out your hair and run into the street and keep going.

01:05:04 – 01:07:19

There’s an episode of somebody that’s been there done that that can maybe talk you off that ledge and get you through that dark time and back to where we need to be. That’s that’s my passion of my purpose at this point in my life. Well, you are a blessing to many people. Well, thank you so much. Having stories about your loved one, things they like or don’t like, foods they like or don’t, moods, activities they prefer pictures of their friends and family and so on, all help in helping a caregiver help you. It helps a doctor understand what their day to today life is like. There’s no downside to having one of these binders that I can see. Hopefully our conversation gave you ideas or you’ve just decided that you’re going to contact our little piece of mind and talk to them about what they can do for you. Letting you know about tools and other resources to help you on your caregiving journey is whole reason I’m here. And coming up next week, very interesting topic, neurofeedback from client to clinician, and how this one family used neurofeedback to help their loved one. It is a fascinating story. And coming up is a little blurb on a new social media site coming out next year. Wellness and lifestyle information, I’m joining the launch of retreat. Retreat is a first of its kind free social media app that focuses solely on health wellness and lifestyle content. The platform hosts live, interactive audio chats, led only by vetted health experts, while allowing experts and users to post and share videos, pictures, and thought pieces. Users can also meet others that share similar health and or lifestyle challenges. Informing communities of like minded individuals, retreat wants to empower people to share their experiences with others to guide them on a journey to better health and living. I’m joining because I want a less crowded space to build a community of listeners, caregivers, and other experts. Watch my current social media feeds for more information about their official launch date. Think we’re all going to love this new platform.