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Happy Healthy Caregiver Podcast, Episode 182: Talking to Kids about Dementia with Alder Allensworth

Alder Allensworth cared for her mother who had Alzheimer’s and her father who had vascular dementia. Alder’s inspiration to co-create a children’s tool kit for families came from watching her mother interact with her grandchildren.

In this episode of the Happy Healthy Caregiver podcast, we talk about the resources Alder and her friend Brenda created to help children better understand dementia. Alder shares the benefits of having structure in our days, how a continuing care retirement community was the right fit for her parents for a while, how FMLA allowed her to be present for her parents in their final weeks, and what her daily energizing self-care practices look like.

Scroll to the bottom of this page to see the full-show transcription.

 

Episode Sponsor – Eve

Loneliness and isolation are problems that many of us face, and the health consequences are serious – equivalent to smoking 15 cigarettes per day, according to the Surgeon General. So today I’d like to introduce you to a new companion service aimed at Seniors and people who live alone, called Eve.  Eve is available to chat by phone 24/7 and speaks multiple languages. She hosts yoga classes, plays word games, does cooking lessons… the list goes on. She also sends real time alerts and daily health updates to Caregivers to keep you in the loop. And it all starts from as little as $15 per month. Sounds too good to be true?  Check it out for yourself at IamEve.ai

 

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Links & Resources Mentioned

 

The Secret Book of Flora Lea by Patti Callahan Henry

 

 

 

Mackenzie Meets Alzheimer's Disease Picture Book by Alder Allensworth

Prevail: Celebrate the Journey by Alder Allensworth

 

 

Just for you a daily self care journal book cover

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Full Transcription

This is the whole care network helping you tell your story. One podcast at a time content presented in the following podcast is for information purposes, only views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the whole care network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the whole care network.
There’s a fair amount of resources for teenagers and on up. But for little ones, how do you explain Alzheimer’s? How do you explain that grounds, not being made? Grant’s not wanting to hurt you and how do you repair that relationship?
Caring for aging parents or other loved ones while working, raising Children and trying to live your own life? Wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the Happy Healthy caregiver podcast to show where real family caregivers share how to be happy and healthy while caring for others. Now, here’s your host, Family Caregiver and certified Caregiving consultant, Elizabeth Miller.
Hello, everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. The Happy Healthy caregiver podcast is also pleased to be a part of the whole care network streaming radio channel. So if you’d like to listen to our podcast and a lot of other caregiving podcasts and some amazing music, download the WCN streaming radio app on your phone. If you aren’t on the happy healthy caregiver email list, you are missing out every Tuesday. You’ll get the weekly roundup, which includes tips under the pillars of happy healthy and caregiver. Plus upcoming events, special offers and more visit bitly forward slash hh CE news. I’d like to thank our episode sponsor Eve. Loneliness and isolation are problems that many of us face and the health consequences are serious equivalent to smoking 220 cigarettes per day according to the surgeon general. So today, I’d like to introduce you to a new companion service aimed at older adults and people who live alone called Eve. Eve is available to chat by phone 220 24 and speaks multiple languages. She hosts yoga classes, plays word games, does cooking lessons. The list goes on. She also sends real time alerts and daily health updates to caregivers to keep you in the loop and it all starts from as little as $153 per month. Sounds too good to be true. Check it out for yourself at I AM Eve dot A I, that’s I am Eve dot A I for this episode segment of what I’m reading, I have a four out of five star read for you. I selected this one for the book club month that I was hosting. It’s called The Secret Book of Flora Lee. It’s a book about books, Sisterhood Bonds and takes place in two time periods. One during the Pied Piper operation in England when Children were being sent out of the city to rural parts of England for protection during World war two. And then another period about a dozen or so years later when these Children are young adults. I enjoy a good theme for my book club. So the English Tea Party theme went well with this one. We also had 215% of the ladies in my book club read it and everyone gave this book between three and five stars. I’ll link to it in the show notes. My favorite thing for this episode is I’m liking these portable and quick protein filled snacks called Midday Squares for an afternoon energy boost. They call these a functional chocolate bar. I buy them at Whole Foods in the refrigerated section. Each contains 290 g of protein and it’s really tasty, almost like a dessert. My favorite flavor is the peanut butter chocolate. One think like a healthy Reese cup here, I’ve also enjoyed the brownie batter and the cookie dough flavors too. They are non gmo gluten free and a plant protein based. And if you don’t have a whole foods near you, you can buy a larger quantity starting at 2500 individual bars together on Amazon.
Let’s meet today’s caregiver in the spotlight. Alder Allensworth cared for her mother who had Alzheimer’s and her father who had vascular dementia. Alder’s inspiration to co create a children’s tool kit for families came from watching her mother interact with her grandchildren. In this episode of the Happy Healthy Caregiver podcast, we talk about the resources Alder and her friend Brenda created to help Children better understand dementia. Alder shares the benefits of having structure in our days. How a continuing care retirement community was the right fit for her parents for a while. How FML A allowed her to be present for her parents in their final weeks and what her daily energizing self-care practices look like. Enjoy the show.
Hello, Alder, welcome to the Happy Healthy Caregiver Podcast. Oh, hello, Elizabeth. Thank you so much for having me on. I’m delighted to have you here and we always kick off the show kind of on a, on an upbeat note with pulling something from the Happy Healthy caregiver jar. So I wanted to get your thoughts on this, Alder. See what you think here it says. Oh, it’s a good one. I think it’s it’s speaking to me today. Let’s see. Either you run the day or the day runs you and that’s a quote from Jim Rone. Either you run the day or the day runs you. What does that make you think of? Oh, my gosh. We just put out a blog on our mckenzie meets Alzheimer’s um website on Structuring your day. Oh, look at that. I know. So that’s just an incredible question. I’ll have to link to the blog post. Yeah, we, we’re talking, I was talking to some friends about Alzheimer’s and caring for Children and caring for a loved one who has dementia and working full time and how overwhelming that is and how like at 10 o’clock at night, everybody’s put down everybody you hope is asleep and then you go, oh my gosh, is tomorrow gonna explode too. Yeah. And it’s so important to try and put some kind of structure in place, not just for, for your own mental health, but for the mental health of everybody in the family. So everyone knows what to expect and to kind of talk about it and have this ongoing structure and like the difference. What did that look like for you alder when you were? And I know we haven’t shared your caregiving story yet. We’ll get back to that. But what did that look like the structure for you? Um When I was caring for my mom who had Alzheimer’s, we had like breakfast with her, she liked to sleep a little late. So breakfast was at eight and we tried to have it at eight every morning. And then during, after breakfast I get her when she was able to help me with dishes and just some of the tasks that needed to be done. Um, the grandkids weren’t there at the time. So, no, they would come holidays from school, but we would follow through with that when they visited too to keep that structure going for mom. It kind of kept her more on an even keel. Then in the morning we would try and do something active, whether it was go for a walk or my mom loved to do laundry. I didn’t get that gene. No, but she loved to do laundry. So we do laundry or she’d love to fold and I get her folding laundry or that type of thing. Then we’d have lunch about noon and then we’d rest a little bit. Try to let everybody kind of calm down and rest. And then in the afternoon again, do something active. If it was a sunny day, we’d go out for a walk and enjoy the beautiful day. If she was getting into something repetitive. Like I wanna go, I gotta go, I gotta go, I gotta go, I go, well, let’s go. Yeah. And we’d go somewhere, we go for a ride or for a walk or something to just kind of enjoy that time and then again, um dinner at the same time and hopefully keeping her active enough through the day would help her be able to sleep at night. Not always worked, but that was the hope. Yeah. And the other thing is when we had caregivers come in, we kept the same structure or my brother would come down to visit and care for mom while I took a break. We kept the same structure. So it really helped everybody but so good. Well, that was a very fitting, fitting tips for our, our quote today when you’ve alluded a little bit to your caregiving story, but share, share with us a little bit about how you became a family caregiver, the folks you cared for what that was like for you. My mom was finally diagnosed with Alzheimer’s, I believe in 2003. Um It was after she had had a back operation and sometimes anesthesia, I’ve heard this from other people can kind of someone who’s maybe not showing a lot of signs and symptoms or whatever can sometimes put someone over the edge. And when she went to rehab, she was really struggling. And so it was at that point that they diagnosed her. And as I look back, I realized how much my dad was covering up for her and I was living in Tampa, they were living in Central Florida. I was driving back and forth, working full time trying to get back and forth and over the several years, as we know, this is the long game I would go and I was starting one weekend a month. Ok. Then all again. Yes, two weekends a month. I’m going there and my dad is really struggling with her cares. Then it was every weekend. Wow. And the family would come down, the kids, the grandkids, they would all come down. We tried to incorporate them in to what we were doing. And at one point I remember in 2009 I show up on the weekend and it was a 2.5 hour drive for me each way and I showed up and my dad said I can’t do it anymore. And you get to that point. Right. The house was always neat and clean and I had noticed I couldn’t keep up with going there the weekends he wasn’t keeping up. It was just those little things you could see, kind of deteriorating around the edges. Sure. You were leaving a life behind in Tampa too. Right. Oh, yeah. Job maybe. And a, and a husband and home and yes. Yes. I must have taken a toll on you. It did. But you know, when you’re going through it you don’t always realize I look back on that time and go, oh, my gosh. How did I do that? Adrenaline for? Yeah. And when we’re going through it we do what needs to be done. So, I moved, I have found a place in Tampa since dad was with her in the home. I looked at different, um, continuing care facilities because he needed support too. And I ended up moving them in a continuing care facility that allowed them to be together as long as possible. Some facilities wouldn’t let them be together. They would put her right into memory care. Yeah, they want to split them up. And I’ve had someone on my show before, Tony who talked about how he had to really push for that in a senior living community. But I don’t know that we’ve talked at length in the podcast about continuing care communities. Can you kind of explain what those are for people and what needs to be true in order for them to be considered for that? Sure. Um, it is a place that has independent living where people go. They’re still independent, but they don’t want to change their own light bulbs and cook meals anymore and do those things, do yard work, that type of stuff. They’re just kind of over that and there’s apartments. So that’s independent living and they usually have a nice cafeteria, um, activities. They have transportation if the person is like, I’m done driving or I just don’t want to deal with, you know, going to, um, finding a parking space or traffic. Tampa. Traffic is no fun. Oh, wow. So they have, you know, buses that will take people shopping or take you out to a nice play in the community or those types of things, then if someone becomes not able to manage their own medications, their own, um, some of their independent living skills, then they may qualify for assisted living and it’s right on the ground so they can move right to assisted living. My mom with Alzheimer’s went to the memory care unit. Ok. She and dad were together for, oh, I would say three or four months and then one morning he couldn’t wake her up and they took her to the hospital and she was dehydrated and she had a fever and she was had some kind of bug. And so we after the hospitalization, she recovered, she ended up going to memory care because he just couldn’t care for her. He had had some strokes too. So he was braille, helped himself at some point. He had diagnosed with vascular dementia, right? It was ok. It was later. Um she was in memory care and he could go over and visit her every day. And it was just nice when he was there. She was calm and peaceful when he was not the noise and the confusion and the not knowing where she was, she would get very anxious and it was a tough situation for her. And then also on the grounds they had a nursing home. So if someone needed total care, you could go there. Yeah. And was this a place where you’re like contractually obligated. Correct? Ok. So stay in there. Whereas, which is the continuing care part of it, you pay into it a certain amount and then that money goes to pay for your care all the way through and what’s not spent then goes to your beneficiaries. Ok. Gotcha. For people who don’t have long term care insurance and that kind of thing, it really is a decent choice. Yeah, I feel like when my mom was sick and had chronic issues, we looked at one near me but she was beyond the point of qualifying. Like, I think there’s a, you know, a point where you require too much care and they’re like, oh, you know, we could have, we could have gotten in there a while back, but it was, it was too late. So, but thank you for explaining that alder, I think that it’s something that people need to understand and we’ll, we’ll link to more information about that too. Um And your role then has changed. You are a remote caregiver then, you know, you’re caring for some. But I know that you’ve, it, people think that it does that you, there’s no role for you once they’re in a senior living home. But that is not the truth. So that is not the truth. You are interfacing with staff all the time. Yeah, you gotta advocate and teach them how to advocate. Maybe not. You know, your mom was in a different story. But your dad learning how to advocate for himself. Like it’s, I remember, I remember all too well. Um, well, and you’ve, you’ve showed up for your parents, you’ve honored your mother and father for many years. How did this experience change you? Um I, um, well, one I had to learn to really advocate because of some of the behaviors because of the environment. She was responding to the environment because she couldn’t process those behaviors out. She couldn’t process the stimulant. That’s what I meant to say, the stimulation coming in. Other people walking down the hall, noise, that type of thing. She just couldn’t, it’s like a sensory overload. Yeah. And she was used to a very, very quiet environment. How did you mitigate that or how did you manage it? We had lots of team meetings, we talked about it. We, they noticed that she was much calmer when my father was there, but I was also feeling protective of him wanting to make sure he got his rest, as you mentioned. Um and I alluded to, he had some strokes and I knew that he was at risk. Sure. And talking to the staff and kind of trying to educate them on who she is as a person and that she was just such a wonderful bright loving mother before this hit. And before some of the behaviors emerged in relation to the dementia, the Alzheimer’s and one of the night nurses when my mom would wander at night would make tea and they would sit down and have tea and that was just so lovely. That, that just really stuck with me that she went out of her way at night. Instead of saying you need to go back to bed or go to your room or anything like that, she would say let’s have a cup of tea, supposedly fixes everything. Right. Exactly. And that was just such a quiet, special time for them when it became obvious that she couldn’t stay in memory care anymore. And they said she had to go to the nursing home. We taught to hospice, they came and assessed her and since I just lived a few miles away, I taught to my job, went on family medical leave, took my family medical leave and we brought her to our home, my husband and I did. Wow. Ok. With home hospice, visiting the home hospice supporting you. And how did the FML A? It’s unpaid. Correct. Correct. But you can use all your sick time and all your vacation time first. Ok. Which is paid. We’re just paid and then once that’s gone, then you don’t get paid, but you do maintain your benefits, your health care, that kind of thing. And your, your position as equivalent position is kept for you. Yes. Yeah, I just was looking that up. Not every company is required to have FML A but they, if you have 50 or more employees if you’re a public company, schools, things like that, it was typically unpaid. Did that, was that able to sustain the time that you need it or did you run out of FML? A? And then what happened? What was real interesting was once we got her to our house? Because I thought, well, she’s still ambulating some. Yeah, she still has all this energy. She didn’t. I’m, I worked for hospice as a licensed counselor for many years. So I know what end of life looks like. Yeah, that’s fabulous that you had that experience. Yeah. So I didn’t think she was that close, but I was really excited that hospice would come because I really wanted that medical support in my home, someone to call and say, hey, you know, help. Yeah, it’s a huge help for family caregivers. Whereas everything’s coming to you, supplies are coming to you. Medication. The nurse is coming. Yes, you don’t have to take them all over the place and they offer clergy sometimes help counseling. Um, and I just mentioned these because I think I see in my work that a lot of people wait too long to even have the hospice conversation. I know the first time I had it with a doctor, I really got like a look like what, what are you talking about? Which was kind of horrible frankly. That could have been handled differently. Like, well, we’re waiting for this and this and this to be true. Um, but mom was on hospice for two years and my mom, so I know she got re, um, you know, they looked at her every 60 or 903 days, whatever the, um, to re evaluate. But, uh, it can’t hurt. It’s paid for by Medicare, which is also a huge financial savings for caregivers. Well, I’m glad that you were able to use that and also use your FML A. Yes. It was interesting when she got to our home where it’s very quiet. Yeah, she could be on her own schedule kind of thing. At that point, she became bedbound really fast and I think she was not functioning at that level of anxiety that she was before she just got relaxed and she felt safe because she didn’t know the people at the memory care. She didn’t know that it wasn’t familiar. That’s not an environment she’s used to. And I think the home environment, the quiet environment and she was with us six weeks before she died. Ok. So it’s a good fit. It was a good fit for her. And, and I think that you make a good point. It’s like environment has a lot to do, particularly when you have sensory um debilitating disease. And I have a brother who’s neurodivergent, like certain things really, really take him off and kind of get turn his behavior in one way and it always comes up as kind of anxiety and sometimes anger which can be um you know, tough to kind of mitigate sometimes. But, well, this experience also prompted a project for you. Tell us about this, about this project that’s kind of sprouted into different avenues and is helping a lot of people. One summer vacation, the grandkids would go to my parents’ house every summer vacation and sometimes at spring break and one summer vacation they came down and mom was probably about the moderate stage of Alzheimer’s then still ambulatory, but not really clear on what was quite going on. Um, trouble planning, sometimes trouble finding words, not remembering things. And one of the granddaughters was drawing these monsters. In fact, I’ve got one right here. Um, we, I had fun stitching up, Mr got a monster. So she was drawing these monsters to help her. She was very creative child and she was like, I’ve got homework, monster, homework. Monster helps me with my homework and thunder monster helps me deal with storms and that type of thing. And she was showing them to my mom. They were sitting on the couch and just kind of enjoying this time with each other. Well, the next morning, um Little Olivia comes down, she told me I could use her name. She comes down and she starts going grand stole my monsters. They’re nowhere they’re gone. Oh, you know, and sometimes little girls can get a little hysterical. We were like, we’ll find them. It’s ok. I went up to get mom for breakfast and the monsters were in her dirty laundry basket. These drawings of these drawings. Yes. Yes. Thank you. The drawings of the monsters were in the dirty laundry basket and the box was in there. So I put it all together and had to explain to Olivia that she didn’t steal them on purpose. Right. And it probably happened, she wandered some at night and probably happened during the night and I’m not sure why Olivia targeted it, but she did and I started looking for resources to explain to young ones, little ones. There’s a fair amount of resources for teenagers and on up. But for little ones, how do you explain Alzheimer’s? How do you explain that Gran’s not being mean? Right. Grant’s not wanting to hurt you and how do you repair that relationship? And there was such very little out there for little ones and my, you know, background is versus a music therapist. And then as a licensed counselor and working in this field, I was like, well, I can figure this out and started working on it and decided, you know, I really need to write a book for Children and this kind of evolved and I contacted my friend Brenda Fried. She and I did our music therapy internships together back in 1980. Love it. You know, eighties girls. I’m picturing the jelly shoes and the hairstyles. So thank you for that. Yeah. And I told her what I was doing and she says I’m all in uh and she went on and became, got her masters in music therapy, music education, teaches singing, songwriting. She is a singer songwriter, has albums out and she’s like, we gotta have music because music makes such a beautiful difference in the lives of people with dementia. And I had had that experience too. So we wrote a song called the Agape Song about that experience. And then we ended up turning it into an animated story song video which is free for anyone to watch on youtube. It’s called mckenzie meets Alzheimer’s Disease animated story song. But if you put in Mackenzie Meets Alzheimer’s on youtube to it, and it was um illustrated and turned into animation by a wonderful man named William Banda whose father had Parkinson’s and he understood what it was about. He got it. So he just did a great job. And as time goes on, we decided that we really needed some education besides just the video. And we’ve created five videos. What is Alzheimer’s disease, which explains Alzheimer’s in terms that kids can understand right about six minutes long. Great, have mild Alzheimer’s disease, moderate Alzheimer’s disease, severe Alzheimer’s disease. And in each of those three, we talk about the behaviors you could see, give you tips and activities you can do in those stages. Again, they’re short and they’re oriented to Children. And then our fifth video is coping with Alzheimer’s for the responsible adult with Children because we felt like the responsible adult needed some support too. And you’re balancing both of those things. You’re balancing your loved one with Alzheimer’s and your Children and you, you’re sandwiched. Yeah, exactly. You’re sandwiched. So that video is the longest one. And we talk about some really tips how to, we even talk about structure, ok. And activities and not to take things personally and some self care. Good. That’s one of my favorite topics. So I know I love that you do that. Yes. Well, in practical self care, like it’s not bubble baths and weekends away like it’s realistic for caregivers. Um Well, such a good thing. So it’s, it’s a program, it’s a picture book, it’s an animated video. Some of it’s free. There you go. The books on I know on Amazon it’s recently an all author. Yes. We just got accepted by all’s authors. We were so excited about that, but it, the book is the lyrics of the song and pictures from the UN video and it comes with a free download of the song. Perfect. And then we also decided because we really want people to be able to access this information. We have to keep it sustainable. But we give, if you buy the book, you get a coupon off the whole program. Oh, nice. Because we just, you want, you want to help people but you do have to make a living. I totally get it like, yes, we got to pay the bills and we got to save for our futures and all of that. Um Well, I love, I love that you and Brenda created this with your experience and your professional expertise that you have. Um what are some of the themes or some of like, first of all, it, would it be appropriate for a person who maybe um doesn’t have Alzheimer’s type of dementia but another type of dementia, I think that the tips and the ideas and the activities really work across the board. She mentioned earlier, my father did, mom died in 2010 and at Christmas of 2014, he had a major, major stroke and lost a lot of functioning, lost the ability to talk and he could, he was in independent living and he could no longer stay there. So welcome family, medical leave again, brought him home to our house and we took care of him again through end of life, we worked with him and he loved. My husband is also quite a musician and my husband would sit in the living room with him and play the guitar and sing and it was just really nice. I love that you were holding on to those memories and not the because I, I know that there were very rough days as well, but we were, but it’s not all bad. You know, people live with dementia Alzheimer’s vascular adventure for long time and So there’s a lots of joy in living with dementia um as well. I love that. You said that that’s one of the things that we almost in every letter or blog is the word joy. Joy. Yeah. Yeah. What are some of the themes that you’re hoping kids are gonna take away from these, these materials, resources and programs? The first thing is not to be so scared that this doesn’t have to be scary that there are thing. If you understand something, then you can work with it. Take away all that stigma, there’s such a stigma for Alzheimer’s dementia and we don’t want to perpetuate that we wanna bring it the other way. And so that’s one also that knowledge is power, use your curiosity, go learn, learn about this at whatever level you can learn about it. And that’s why we gear towards the real young kids and then to have fun and to have joy and to play together. Um Right now I’m, I’m also an RN and I work for home care company and I go into people’s homes and I was asked to go to this home and to assess these two patients that had Alzheimer’s. That’s about all. You know, you just get a like a little synopsis and off you go, I walked in the front door and the caregiver was a widow, a single mom, her husband had died young unexpectedly. She was like in her early forties, there were two very young Children in the home, like six and eight. And the, it was her husband who died, father and a neighbor. Oh, wow. So, she didn’t even have blood relationship but she brought them into her home because there was no one to care for them. Now. Bless her heart. But she got it right. I was amazed. I walked in the home was quiet. It was nice sitting at the dining table with like a kids’ puzzle. Not too many pieces and the big pieces nice and colorful. Yeah. Yeah. It was one of the elders and one of the little kids putting together this puzzle. Uh And then in the living room on the floor was the other elder and the younger boy and they were playing with Legos and I was just like, oh my gosh. And then she was, you know, obviously was working from home and she, you know, took a break from that to meet with me while I did the assessment and everything that she could then do her job, right? Because she had to work. Yeah, of course. Yeah. It was just so beautiful and so amazing and I believe that it takes time. It takes energy which you don’t have a lot of, it’s a caregiver. Mhm. But if you spend a little time and seek resources, support groups, watch your podcast, you know, all those things, there’s so many wonderful resources that you can start piecing it together. And figure out what you can make work for your family. Yeah, it has to be sustainable. Like everybody’s situation is going to be a little bit different. But to your point, like, try it on, take a piece, see how this is working. Have a little patience. It might not stick the first, the first time. Um, so lovely. I’m sure alder, you also go into homes where they don’t quite have it all together and people are correcting their loved ones or this and that, like, how do you approach those situations? Oh, my gosh. The most typical is she’s driving me crazy. She’s saying the same thing over and over and over and over again and she’s not listening to my answer and it’s, and it’s like, take a deep breath. Yeah. Slow down. Let’s talk about Alzheimer’s, let’s talk about how it affects the brain. She’s not doing this to annoy you on purpose. This is part of the disease and educating people. What the disease is I think is so important because once somebody understands that this is not about them, the person is not trying to annoy them or hurt them or anything else, they’re just reacting to their environment and that you see, it still can be annoying as a caregiver, but at least you have an understanding and accept it and try something on maybe redirect, get them engaged, get them active. Um It’s a lot of trial and error. Whereas when mom would say let’s go, let’s go. Let’s go. Let’s go. Let’s go. Let’s go. And we go out for a walk or something. But, um, just kind to throw this in when you hear someone is a wanderer or, you know, someone is a wander. Please make sure that your home is safe that they can’t get out. Right. It just takes the first time, right? Like, do it before it’s a, before it’s a problem in a crisis. Like look into the future and I think that’s where support groups can be really helpful. Kind of give people a glimpse perhaps of what’s to come at a later stage so that people can kind of plan and get in front of it. Yeah, people baby proof their homes when they’re pregnant and getting ready to bring the child in and there’s all sorts of cool things to baby proof. Well, some of those things work really well for someone that has dementia, right? A lock on the door out of reach or on cabinets, those kinds of things or set the stove up so that they can’t turn it on. Yeah, that’s true. I mean, all of that stuff can be, can be um, not so fun if it get, it gets, makes, it can be scary and unsafe and a mess. Um You talk, you have a tip for caregivers where you say that anxiety is contagious, but so is a calm loving smile, like contagious stuff. Can, it’s not all necessarily bad, but tell us a little bit more about this. Well, as I noticed this first, when I was working as a hospice counselor and going into a home and you could just feel the anxiety. And of course, if someone’s been giving a life limiting prognosis, whether they have dementia or cancer or heart disease or lung disease or whatever it is, that’s anxiety producing. And when someone is feeling anxious, all of a sudden, other people close by them start feeling that anxiety too and it just starts building and building and building and it’s bills before you even really know what’s going on. It just kind of like, oh my gosh, how did we get to this point that we’re all just, you know, on the edge and recognizing that and learning that that can happen and breathing, it’s so important to breathe, to slow down, to take a break, to walk away, um engage other people and help for you. I was, even though I was driving to my parents regularly, I was calling them every night because I knew my father had heart disease and if he had a heart attack, what was gonna happen to my mom cause she wouldn’t know what to do. So I was calling every night to make sure he was still alive and check on him and them and make sure they were OK. And there was a neighbor who was a retired EMT he said you can call me if they don’t answer and I’ll go down and check. That was wonderful because he was comfortable walking into a tough situation. Well, then one day I’m driving to work and I’m thinking my brothers have fingers too, but they live so far away and I just didn’t even think, I thought, wait a minute, I should call them and get them to make the calls during the week when I’m working at night. Yeah, one last thing on your plate. Right. So, they each took a night of the, a couple of nights of the week committed, they would make the calls. They knew the neighbor’s number to call if there was an issue and then I could have, like a normal evening. Right at all. I could replenish myself because I was exhausted and I replenish myself and people just, we don’t think about our resources and we talk about that. Where are your resources? And sometimes people want to help? They just don’t know what to do. Yeah. I think, I know that was the case with my brothers. One brother in particular is you be real specific and they know how they can, you know, they’re buying the help but they’re not going to think of it on their own. And here’s the thing, alder, you could have done it. You could have called it, but you knew that you’re, your energy level was depleting and something had to give and it couldn’t be your own health and happiness. And so what else is out there that I can tap into to do this? So, just because we can do the task, doesn’t mean we have to do all of the tasks. And what was so beautiful is that my brothers calling on their nights, even though they live so far away, kind of rekindled a closer relationship. Yeah. Understanding of really what was going on and that it could kind of reference the decline. They had a point to check in. So interesting. So interesting. Beautifully. I’m sorry, I interrupted. No, that’s ok. What, what I mean? I know at some point you also have your own story of being a cancer survivor. When did all of this happen and tell us about this miraculous recovery. I’m going to call it. Oh, my goodness. We are switching gears. Yeah. I mean, because I want to put the context in, was that before or after that was before? Ok. So, um, in 1990 I was diagnosed with something called adnoc systems of the gland. Very rare. Very let. Yeah. Um, no one had survived it. They told me I was case 80. 0, wow. So the only thing they could offer me was radical surgery because neither chemo or radiation or anything worked. And that’s what happened to my face. So if you’re not watching the video alder has visibility out of one eye, I have one eye. Correct? And so my only choice was to have the surgery, which I did. Wow. And I’m the longest surviving that I’m aware of with no recurrence. Amazing. So I had a great surgeon. They did what they needed to do and my parents were with me, held my hand through the whole thing. So, as you can tell, we’re pretty close tight family. Well, sure. But at the same point, like you have this experience and you knew that, um, you’ve got to be mindful about your own health through this. You can’t just put everything on the back burner. That’s a huge risk for you. That’s right. And that’s a risk for everyone. Caregivers usually have some kind of, I shouldn’t put this on caregivers, but statistically, caregivers definitely have illnesses and sometimes pass away before the person they’re caring for. It’s very common, particularly in older adult caregivers. I know that probably had a lot to do with my dad passing first before my mom. So, what did you, what do you do to Sprinkle in self care in your days? Now? I, I don’t, I’m not good meditator but I try to 20 minutes every day to either go sit outside or just sit in a quiet place. I set an alarm and sit and relax for 20 minutes every day. I work out at least 4 to 5 times a week because whether it’s a walk around the neighborhood or I’m old enough for silver sneakers I go to the gym. Um, but I do something physical every day and then I try to eat real healthy too. Try to have a good healthy app, you know, not a lot of sugar, not a lot. I don’t eat meat but that’s a personal choice. Um, but I try to eat lots of fruits and vegetables and eat healthy and that helps me keep my body in good. Yeah, we only get one of them. That’s right. And you gotta take care of it. And, and even through the caregiving, I had some of those habits because I established those habits after the cancer. So I had some of those habits and I had a friend who is in his nineties and he was still out biking and I said, what, you know, how can you do this in your nineties? Go out and ride your bike 15 miles. And he said, habits. Yeah, he didn’t start when he was 90. No, it’s so important. The mobility and everything to just kind of keep, keep doing and the self care, self care. Yes. All of that. There’s a wonderful woman named Donna Eden who does energy medicine and she has a five minute routine and it’s an energy routine that focuses on the meridian systems of the body and balancing the body’s energies. And I do that every morning as I’m getting out of bed. Is that a youtube video? I’ll link to that. I’ll find it on youtube, Donna Eden energy medicine, five minute routine. Got it. The other thing I do before I get out of bed in the morning and before I go to sleep, right when I get into bed is say my gratitude, how many however many like? Yeah, I’ve been doing it for years, but however many I feel like or what just occurs to me but just see my gratitude. Well, those are good book ends to your days. Alder on each end there, I love that. And on that day, let’s, let’s get some thoughts on the just for you daily self care journal prompts that I’ve got picked out for you. So let’s see. Let’s see. Um What’s something you wish you knew more about? What’s something I wish I knew more about my gosh, I’ve got such a curious mind that if I want to know something I go and I start looking at and researching it. Um What I’m really looking into now is kind of our spiritual, inner life. Ok? And really understanding the value of that and the importance of that in a daily practice. And it doesn’t, I mean, it could be a Christian practice, it could be a Buddhist practice, it could be a Jewish practice or just some kind of practice. But um or people with a, a talk about a higher power but really connecting to that kind of energy that divine guidance, that divine wisdom and tuition. So that which aligns with your morning, morning practice. So, that’s, yeah, it’s good. That’s, you know, I think this is all intellectual self care. I call it like, you know, just to use your mind and really kind of grow and be curious and, and think about that. Um, so good. If you had a, if you could take a whole day off, how would you spend it? Oh, probably alone. Interesting. I tend to be a bit um, of an introvert. So I recharge myself when I’m quiet and alone. Yeah. Extroverts tend to recharge themselves around other people. Yeah. So I would like to have a whole day alone. Probably go to the beach, be in nature walk, get something good to eat and I’m not opposed to a delicious ice cream cone for a special treat. Um, but just kind of have a quiet and respective day in a beautiful nature setting. Love that. I love that. I think it’s important too. Like what you said about how you get your energy, you know, do you get it from other people? Do you get it by, you know, yourself? For me? I would say I’m an outgoing introvert. Like I like being around people, but I know I need to balance that with my own time to recharge because I can give, give, give, give to everybody else and then be depleted. So I have to go back and write and read and, yeah, do my alone time. Things too. So I think it’s important that you recognize that about yourself. Um, what’s something you were afraid to do and did it anyway? Oh, boy. Um, I like to push the envelope. Interesting. Tell me more. But, um, I have bought the Camino de Santiago, which is a pilgrimage across Spain 500 miles after my father died. I went and did that. Wow. And I’m going back in a month to walk another of the trails across Spain. So I’ll be doing that and even though I’ve done it once before it’s, I’m walking a different trail. Yeah. And, and a different experience. So that’s a little intimidating. Um, writing books has been quite stepping out of my comfort zone. Um, because it’s one thing to write it and put your thoughts down and everything. But then when you put it out to the public, it’s almost like you’re baring your soul. Yeah. Airing yourself and while people like it, well, they get something out of it and that’s really scary. And being a bit introverted, the marketing part is hard for me too. Yeah, I get it. Yeah. But as a business owner it’s like unavoidable. We have to do it. You got to get these products into more people’s hands so it can help more families and that’s the means to the end. Well, I have enjoyed this chat with you so much alder. Like, is there anything else that you were wishing we were talking about that we failed to mention or um any just parting words for caregivers. Oh, I have enjoyed it too. Thank you so much for having me on parting words. For caregivers. The first thing that pops into my mind is you are not alone that you may feel alone and I know we all do at times, we feel alone or nobody else understands or they can’t understand. And with Alzheimer’s, it’s a long, long process. And you’ve got to figure out your resources, just those things just reaching out or hiring that caregiver to come in for an hour or a family member or somebody to sit for an hour so you can go out with a friend. Yeah, but do those things that will help you make it the long game, such good advice, such good advice. And how do people keep in touch with you, Alder and learn more about the programs that you offer? Our email is Mackenzie meets Alzheimer’s at gmail. com and our website mckenzie meets Alzheimer’s. We’re on Instagram, we’re on linkedin and it’s all about mckenzie meets Alzheimer’s. I love it. Well, we’re gonna link to all of that in the, in the show notes page so that people can connect and thank you so much for using your experience and creating something, you know, fabulous for, to help other families from that. I really appreciate this. And thank you for having me on and talking to you. We have a lot of things in common. Yes, we do take care alder. You too.
Wait before you go. I want to tell you about another great podcast. If you’re caring for someone with Alzheimer’s or dementia, you’ll want to check out the whole care networks. Untangling Alzheimer’s and dementia and all’s authors podcast. All’s a, is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. They offer biweekly interviews on their podcasts with the authors who share their personal stories and painfully learn lessons to help you on your own journey. Find them at Alls authors. com or on the whole care network.
Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole care network. As always show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com. Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the Just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform, it really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue. Maybe while you’re subscribing, consider leaving a five star rating and review or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as happy healthy caregiver. And until we meet again, please take care of you.
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