Ep.114 Building Resilience and Community in Dementia Caregiving with Diane Chew

Some of us have already been thrust into the role of caregiver. For many, this has meant the loving call to duty as our parents have aged or have had failing health. No one prepares you for the emotional and physical toll of, not only caring for the loved one, but also the added stress of the daily responsibilities we already had on our plates. But what if the person in our care is our spouse or partner? We may not have the luxury of a team of siblings to act as backup. There's much to learn regarding resources, support, and self-love. 

Join me as I sit down with Diane Chew, a remarkable home-based dementia caregiver and life coach, who has devoted her life to caring for her husband, Ben. Diagnosed with Lewy body dementia, Ben's journey has been marked by unique challenges. Diane's candid reflections on their early years together, her transition from a scientist to a life coach, and her invaluable lessons offer a wealth of wisdom and support for anyone navigating the complexities of caregiving.

Discover the practical strategies Diane has developed to manage Ben's condition, from finding suitable outside resources to the crucial importance of nighttime care for her own well-being. We explore the benefits of using cannabis to manage Ben's symptoms and the stringent safety measures Diane has put in place at home. A recent incident where Ben wandered off underscores the unpredictability of dementia and highlights the emotional highs and lows caregivers face. Diane's story is a testament to the resilience and unwavering love required in the role of caregiver.

As "Dementia Coach Diane," social media has become a lifeline for Diane. She proves that it is never too late to develop technology skills, and she shares the growth of her online community, which now serves as a supportive network for caregivers worldwide. Diane's message is clear: caregiving is a choice, and building a support network is essential. Tune in for an episode filled with heartfelt advice, practical tips, and relatable stories.

You can find Diane Chew at:
www.dementiacoachdiane.com
Instagram @dementiacoachdiane
https://www.tiktok.com/@dementiacoachdiane


Dementia Society of America https://www.dementiasociety.org 

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Transcript

Michele Folan: 0:00

My story of midlife and menopause is probably not unlike yours. The midsection fluff came from nowhere. I was tired and achy. Not sure why I waited so long, but I did get coaching, but only after looking at the multitude of programs out there on the market. You don't have to spend a lot of money, do crazy workouts or buy a bunch of special food to get results. Let me show you how. My six-week group program starts every few Mondays and I promise by week two you will feel better and by week four you will start to see body changes. By week eight, other people will want to know what you're doing. This is not a diet. It's a lifestyle with sustainable results. Are you ready to invest in you? I'm happy to get on a call to explain the Faster Way program or just check out the info in the show notes. You can even send me a DM on Instagram. I can't wait to work together. I can't wait to work together Health, wellness, fitness and everything in between. We're removing the taboo from what really matters in midlife. I'm your host, Michele Folan, and this is Asking for a Friend.

Michele Folan: 1:28

Some of us have already been thrust into the role of caregiver. For many, this has meant the loving call to duty as our parents have aged or have had failing health. But no one prepares you for the emotional and physical toll of not only caring for the loved one, but also the added stress of the daily responsibilities we already had on our plates. But what if the person in our care is actually our spouse or partner? We may not have the luxury of a team of siblings to act as backup. There's much to learn in regard to resources, support and self-love. That is part of this very selfless journey. Diane Chew walks in these shoes every day. She offers practical dementia tips and caregiver support through her insight and inspiration from a home-based dementia caregiver and life coach. Welcome to Asking for a Friend, Diane Chew.

Diane Chew: 2:22

Thank you so much, michelle. I almost cried at that introduction, so forgive me because I'm often kind of on the edge of tears. Sometimes they're tears of joy and sometimes other things. But thank you, yeah, I'm pleased to be here.

Michele Folan: 2:39

Well, I'm very glad we were able to get some time together, Diane, and just so you know, you are free to tear up all you want, as we record. It wouldn't be the first time that either the guest or I have had a moment, so just feel free to be you. So I would love for you to kind of fill in some of the gaps here about family, where you're from and schooling and your career path.

Diane Chew: 3:09

Sure, yeah, I'm a Philly girl. I've traveled a lot all over the world, but I haven't lived more than an hour from Philadelphia. We live in New Hope, pennsylvania, right now, which is, of course, a beautiful name for any town. Ben and I met at Penn State. We both went there for our undergrad work and I was 18 and he was 20 when we met. So we dated for 10 years because we had a very different career path.

Diane Chew: 3:38

He went to school to kind of I shouldn't say shut his parents up, but to satisfy his parents, because he's a musician through and through and he went back into playing music and ran recording studios professionally throughout his career, whereas I was a scientist first and foremost. But my career path went from research to a big pharma company. I kind of sold my soul to the pharmaceutical company. That helped my parents out financially, which is a story in and of itself.

Diane Chew: 4:11

But, and then I found life coaching, because I had gotten into training and development while I was in my corporate career and the coaching was such a perfect blend. So I got certified as a coach while I was working for the company, but I was like 20 years too soon, like they didn't know what to do with me and, through a series of life events, ben and I have been through a lot of intense events. I got really sick, I lost my job, then decided well, this is a good time to get my own coaching career off the ground. And it's interesting because when you're coming from a place of fear or lack which I was at the time because our income went to zero not the best place to be starting a coaching business.

Michele Folan: 5:02

Trust me, I know I'm in the same boat right now.

Diane Chew: 5:07

It's, it's daunting.

Diane Chew: 5:09

And so I had some clients throughout the years. But what happened was when all this developed with Ben, which started and I'll speak again to maybe you know when the symptoms started and I'll speak again to maybe you know when the symptoms started, but it kind of blew up in our faces back in 21. And as I started to share our journey, I found that a lot of the coaching principles that I had learned and applied and had shared with clients were carrying me through every day. So in some ways this has become my coaching practice, which is to help myself, help others as best I can, to deal with the very challenging realities of being a caregiver, no matter what your relationship is with your loved one.

Michele Folan: 5:58

You've known, Ben. Then for what? 50 years?

Diane Chew: 6:02

Over 50 years.

Michele Folan: 6:03

Over 50 years. You have a long history with him. You knew him very, very well. So when you started to notice changes, what were those? You said back in 2021, was that when you started noticing or was before that?

Diane Chew: 6:22

No, I probably. The first symptom was probably back around 2015, because I noticed a tremor. Now that is common with Lewy body dementia, which is his diagnosis, but at the time I didn't know anything about that and I was thinking diabetes because his father had late onset diabetes. But we got that checked out and it wasn't. And he's a guitar player and sometimes would get cramps in his hands and I thought well, you know, so, again, you kind of let it go.

Diane Chew: 6:52

He didn't want to do anything about it. I'm like, fine. Then, over I guess maybe a five, six year period, I noticed that he would be asking me to summarize movies, like three or four times during the movie. I'm kind of looking at him, but I'm so left brain oriented that I can track names, places. You know, I've always been like that and he's very right brain oriented as a musician, and so I just thought, eh, he's just not paying attention or he's looking at the colors or the something else, and so I didn't think anything of it. Then he would be asking me the same question over and over again.

Diane Chew: 7:30

As you know, the years went on and again, one time I did say hey, hon, like yo, like, are you paying any attention to my answer? And he actually turned to me and he said are you writing a song in your head? And I was like no, I'm not. So I kept letting it go because he is so right-brained oriented and I thought, hey, let him be in his own world. But in 2021, it just was like an explosive change and I couldn't deny anymore that there was something seriously wrong.

Michele Folan: 8:06

What happened in 2021?

Diane Chew: 8:08

that yeah, I'll be perfectly frank. Ben used cannabis as part of his lifestyle. He's a musician, we grew up in the 70s and it was never something that interfered with his life or our relationship. In fact, there were times when he stopped using it that his anxiety would get so bad I would be like, hey, please have at it.

Diane Chew: 8:29

Have a joint, yeah, please go for it. Take a bong hit. And, interestingly enough, he had an anxiety attack in June, June 5th of 2021. And after he had gotten a buzz, but, as I said, said I don't know why, but he got an anxiety attack and he stopped cold turkey. And I'm like honey, are you sure you want to do that? I mean, you're at that point. I guess he was 68, like you're 68 years old. You know you've been using it since you were like 15, do you really like? Why are you doing that? And but he was like Nope, I'm just not going to do it anymore.

Diane Chew: 9:05

And I was really worried because he stopped sleeping like his and, as it was, he slept a musician's hours, you know, he was pretty much awake all night and would sleep half the day, but he, he was. He stopped sleeping altogether. And so I went ahead and set it up for him to get his medical marijuana card and I talked to the psychiatrist that was associated with the company that I used and I said, could these symptoms, like you know, lack of sleep, I mean, one morning he thought I was his mother. I was like what's going on? And he I said, could that be related to the abrupt withdrawal of the cannabis, and he said oh, absolutely, and those symptoms can go on for up to a year. So, of course, I don't think I was in denial. I was in confusion, you know, and I'm observing this. I checked with other drug and alcohol counselors and I was researching things. I tried to get him back on some kind of gummies to help him sleep and he refused. So what do you do, you know? And so for about six months, ben's schedule seemed to change. It aligned with mine and it seemed like the crisis was over and for the first time in our 50 years, we were enjoying getting up at the same time going out for lunch, living what we had hoped to do in retirement.

Diane Chew: 10:31

But then, in the spring of 22, he started to have episodes of what I now know are called the imposter syndrome. It's relatively common with lewy body. There's something that affects the recognition areas of our brain and he looked at me and I looked like his wife, but he thought I was an imposter and he wanted me out of the house. And I don't know how many episodes he had through like 2022 and into 23.

Diane Chew: 11:01

I think I stayed in a hotel about 30, 35 times because there was no convincing him. I mean, I tried pictures, I tried recording conversations, I tried everything and, as others will know who have tried the same thing, it's impossible when they don't recognize you. There is no convincing them and, of course, I was afraid to leave the house because I didn't know what he was going to do. I alerted our neighbors. Just so happens, our neighbor is the fire chief for our area, thank goodness. But once Ben called the police on me and then, finally, I did what I didn't think I could ever do, which was call the police on him. I didn't think I could ever do, which was call the police on him, it was in December of 23.

Diane Chew: 11:47

And again, he didn't recognize me, but he was using a broomstick to get me out of the house and I thought we're going to have to go to the hospital. I've got to try to get him assessed somehow, because up to that point, I had tricked him into going to the emergency room about six months earlier and at least got a CAT scan that ruled out a brain tumor. But I couldn't get any further, and every time I made an appointment it was canceled. Every time I was ready to get the car and go, he would refuse to go. And so, sure enough, I found myself in December of 2022. And, yeah, we ended up in the emergency room. And for your listeners, again, I hate to say this, but if this ever happens, you have to be a strong advocate for yourself.

Diane Chew: 12:36

As heartbreaking as it is, I had to convince them that it was an unsafe discharge and the truth is it happened twice. It happened on December 16th. We're in the emergency room, we're waiting to be assessed. I told them what had happened, but a psychiatrist came in, asked Ben a couple of questions, decided he was okay and sent him home. So, of course, part of me is relieved because, you know, I didn't want to leave my guy there. On the other hand, I'm like what if it happens again? It happened again one week later, december 23rd, and this time I had to say absolutely, it's unsafe. I mean, everything I was sharing was true, but I had to use really strong language. So now we're in the emergency room over Christmas, waiting for a geriatric psych bed to open in another hospital, because our local community hospital doesn't have a geriatric psychiatric assessment department and, of course, nothing's going to open up for Christmas. And so we're in there for five days, at which point I would have had to go before a judge to say, yes, I want to continue this. You know unsafe discharge and they had switched medications on him. So again, once you know, you're kind of keeping your fingers crossed, saying maybe this will help.

Diane Chew: 13:55

So we went home again, but at this point I did actually have a deposit at a facility, because I said if it happens again, I'm going to have to admit him to a facility. I can't live like this. Well, again, we went for a month. I thought the nightmare was over. He seemed to be doing really well on this new medication, and then it happened twice more when I just had to get out of the house and at this point he was getting increasingly disturbed, especially at night, and he wasn't sleeping again and pacing all over the house.

Diane Chew: 14:34

And, by a serendipitous event, I came across a card for an elder care consultant. When we had been in the emergency room in December. Somebody overheard me talking to a friend in the emergency room waiting room and she came up to me and she said I'm sorry to eavesdrop, but this consultant helped me with it. My mom said she's expensive, but she's worth every penny. Well, I had stuck the card in my wallet. Of course I had forgotten about it. And now here we are, like two months later, I come across her card and I'm like I don't know what else to do. So, sure enough, I called her and she actually brought me to where we are today, which has been again such a journey. Now, without again going in. I'm happy to share any details that would be helpful. Again going in, I'm happy to share any details that would be helpful.

Diane Chew: 15:26

I still thought Ben was going to have to go into a facility and she was looking for one that might accommodate him, because he's got some unusual aspects to his condition, which includes hyperactivity. I think there's some autism that has been aggravated, so he can be a disturbance, you know. That's why, like, daycare centers don't work for us. He's highly mobile and you know there weren't that many facilities that would even take him because at the time he was a fall risk. So what has evolved has been care partners that I do pay for privately and I am deeply blessed that I can do that as of today.

Diane Chew: 16:08

I don't know what the future is going to bring, but right now I have care partners that come in. I have not every day, but I have somebody with him now and I do have somebody with him every night because I have to get my sleep. I just have to. I can't function. I can handle him during the day and I hate to even use those words handle him. I can take care of my guy safely during the day, but I have to sleep at night. So that's like that's a yeah, I have to, I have to have somebody there at night.

Michele Folan: 16:40

That's your non-negotiable, because I will say this that it does make probably handling whatever comes your way much easier if you're at least well-rested.

Diane Chew: 16:53

Yeah, and I'm not always well-rested, but I get something. Yeah, and you know, I don't know where my path is going to lead. But I'm telling you, Michele, if there's any way that I can start a nonprofit and offer grants for people to get a caregiver so they can get a good night's sleep, that's the number one thing I'm going to do, because I'm almost like afraid to admit that I have someone, you know, that allows me to sleep, because my heart just like afraid to admit that I have someone, you know, that allows me to sleep because I've, my heart just goes out to those that can't. And I have something else like I'll share on that in a minute but, um, so, yeah. So that's where we are right now. Um, it Ben did end up in the hospital last year for 10 days and, um, they changed medications again.

Diane Chew: 17:49

Uh, he came home. As I said, I had some help in place. I also got him back on using the cannabis. You know we give that. I say we, my care partners, and I give that to him around the clock and he does really well with it. Lewy body dementia individuals tend to be more hypersensitive to drugs than some other types of dementia, so I like to keep the pharmaceuticals as low as possible, and he hasn't had any side effects from the cannabis. Sometimes it, you know, might make him sleepy, but good.

Michele Folan: 18:26

Yeah, well, if it takes the edge off, do you ever worry about him just opening up the front door and taking off?

Diane Chew: 18:33

Well, absolutely In fact, that happened the other day. I have to tell him myself. I put special lock before he came home from the hospital. This is back in the spring of 23. I had special locks put on the doors that even I have sometimes opening if hard time opening. I have special locks on the doors. I had gates on the steps.

Diane Chew: 18:55

I moved to bed downstairs for him, so his care partner and I don't care if they sleep, as long as they wake up when he wakes up. So everything moved downstairs for him. Now he, as they, wake up when he wakes up. So everything moved downstairs for him. Now he still does come up to take a shower. You know we, we help him with that, but um oh yeah. So and, as I said, ben is extremely mobile and strong, which I'm grateful for. So we, we've been fine with that in my. You know we, we keep the doors locked and he'll say what is this and how do you do it? And, quite honestly, even if I show him, he forgets. So we've the locks have been really really good.

Diane Chew: 19:30

Well, darn if I didn't leave the back one unlocked, because I got some plants for the back deck and I was going in and out watering them. And then I I was, we were getting ready to take our ride and I was in the other room for a minute getting my backpack together and all of a sudden I'm like Ben you know I don't hear him because his he has a gate that, quite honestly, kind of shakes the whole house and sure enough he took off a little, you know little jaunt. Praise God we live on a circle and not on a busy street. But yeah, I started to run after him wherever he might be. I'm like you can't go fast enough. You got to get in the car. So I went back, I grabbed the car. He's not around the circle. I go down to the end of the street, I'm back. I'm panicking, I'm about to call the police. Circle. I go down to the end of the street, I'm back, I'm panicking, I'm about to call the police. Darn, if I didn't see him trying to get in and out of somebody's van. That was like in front of somebody else's house. It was a workman.

Diane Chew: 20:31

I think the feeling of relief that flooded through me was like incredible. So it taught me two lessons Never, ever assume anything in dementia. Care, don't assume they're not going to get out. Don't assume they're going to not fall on the steps. Don't assume, you know, like that's why I had a safety assessment done at our home. Like you know, don't assume anything. And two, when you get a feeling like relief, like that, don't ever forget it. I mean, like I've just been savoring that for the past week now or so, because I think sometimes my nervous system feels like it doesn't remember what relief feels, like you know, but he gave me a good dose of it.

Michele Folan: 21:18

Well, it's like the mom who finds their kid at Target after the child's been gone for five minutes. It's terrifying, right. It's probably no different than having your husband, you know, take off in the street. I know and I know there's different types of dementia and you've done a great job at talking about Lewy body dementia. Do you find that this type of dementia adds a more complex layer, or does it make it a little easier because he is mobile and he's able to kind of get around?

Diane Chew: 21:58

It is. Every case is so unique. Quite honestly, I don't compare, because what's the point For me? I do focus on the fact that he doesn't have any other medical conditions. Somebody else, you know, and I've had some of my followers say like, oh, that would drive me nuts. He moves all the time. Or like, oh, there's no way I could handle somebody that was that mobile. Well, I'm just grateful that I can. I'm strong, I'm healthy and we can take walks together and you know. And he doesn't have any other medical problems. He has an amazing appetite. He drinks more water than I do.

Diane Chew: 22:35

I just really keep focusing on you know what's good. On the other hand, his language is almost I shouldn't say it's non-existent, it's like he's talking a different language. So there are other types of dementia where that's a lot. Uh, that the language piece of it is not as dramatic as it is in louis body. His gait when he is off it's scary because he's so mobile and like, as I said, when he was leaning, that was scary. So I long wouldn't answer your question, but I think everyone just has its own mix of challenges and I just do my best to focus on the parts of what we have that I'm grateful for.

Michele Folan: 23:18

What is the prognosis with Lewy body dementia?

Diane Chew: 23:21

They're all terminal illnesses, but life's a terminal disease. We're all going to die Now. I personally, once we got the diagnosis and I asked his neurologist about 50 times if a specific diagnosis would make any difference in the treatment for him and I was reassured multiple times that it would not. So for me, I don't want to know the prognosis. What's the point? I don't want. In fact, I did subscribe to some like an email conversation with spouses of Lewy body dementia and I was starting to read it and I was horrified and I started to get all these fears in my mind when in truth we don't know.

Diane Chew: 24:12

Now some people want to know what may come. My personal choice is I don't want to know. I have care partners that have experience with dementia. I've told them all. I said if you notice anything that I'm not noticing or you think I'm in denial in any way, you better tell me, because I want to keep Ben safe and if we ever get to the point where we cannot take care of him at home, then I will make another choice, because his safety and my safety have to come first.

Diane Chew: 24:43

But what's kind of interesting is that the consultant that I worked with ran a memory care center for 11 years and she said she had never seen someone with Ben's diagnosis even out the way he did. He just, she said, because when I first started to work with her, it seemed like his symptoms were progressing really fast. And she said, like Diane, I don't know, you know seven to 10 years max, and he's probably in the middle of his you know journey, but nothing has changed for over a year now in terms of his medications. We had that little mini crisis about a week ago, but I think it was more related to his back. Yes, things could change tomorrow and start to go downhill again, but I don't know that. So I just really want to be present with him and not let fears of the future, which I cannot control, take me from being with him right here, right now.

Michele Folan: 25:40

Yeah, yeah, you know that's beautifully said and great advice. I know you have other tips and suggestions that you share with your followers. Um, and, by the way, everybody Diane is on Instagram and that's where I found her. She's very comforting but realistic in how you approach your followers, because they're asking you questions, and very personal questions about their situation. So you do have a wonderful breadth of knowledge on the topic. But if there were three to five tips or suggestions that you have for anybody in a caregiver situation, whether it's dealing with dementia or cancer or whatever it may be, what would you tell them?

Diane Chew: 26:33

Number one remember, caregiving is a choice. You may think that you're trapped and you don't have a choice, but you do. Nobody's holding a gun to your head saying you have to take care of your mother or your father or your sibling or your spouse. It's a choice and for me, when I realized that, I was like yeah, right, it really is, and that helps me every day. Number two and this maybe applies a little bit more to dementia, but I think it's true of caring for anybody See, if you can hand over the expectations that you used to have for that relationship to your creator.

Diane Chew: 27:15

I call my creator God. What I found was that I was forced to hand over my expectations of Ben, certainly as a partner, as a friend, as a man or even as an adult, but in the space of no expectations. What was revealed was unconditional love and it was there all along and it gets me through every day. I mean, when people say, like, how do you handle the bitterness and the anger and the frustration, I'm like no, I don't really feel that. You know, it's taken a lot of prayer and a request for God to help me change my perspective. But yeah, you know, it's kind of like okay, and though, of course, there have been times when I've been well, especially when he was like beating me to get me out of the house I'm not saying I came to this right away. I mean, those first 18 months were brutal, but we're in a place of relative peace now. That allows me to see how this experience can truly help me grow and let go of all the things I was attached to. I mean, we just got through Memorial Day weekend and in the past I would have been wanting to do something fun and, you know, make sure that we were celebrating, which is not even what the holiday is all about. My gosh is to commemorate people that died in the, you know, fighting for our freedom. But I mean, I was attached to a lot of things and I'm not anymore. And I'm not anymore and there's a freedom in that. That's actually pretty cool. Yeah, and I've also so okay, so that's two things Okay. Also, oh, my gosh, stop being dysfunctionally independent.

Diane Chew: 29:11

Most caregivers can get that way and we're afraid to ask for help because we're going to be rejected. Or we did ask for help and people didn't give it to us, or we don't know what to ask. Start saying you know, when people offer to help, say yes and say I'm not sure what to ask for right now. If you have an idea, that's great. How about a freezer full of food? Or bring me over some dinner? Just come, come, do a load of wash for me. Or could you go, if possible, just watch my loved one while I just go breathe or sleep or get a manicure, you know, or something.

Diane Chew: 29:45

So I mean, it's, it's, it's very tempting, especially for women, I think. Well, men and women in the caregiving role, to suck it up, and I'm going to do this and it's like no, no, no, no, no. Get used to asking for help. And also, if you're not yet in that role, start to network now, like get to know your neighbors, you know. Get to know people in your community, in your church. Start to give yourself. Maybe somebody else needs your help right now and when the time comes, you may need to ask for their help. So it's something that we all need in life and yet we've gotten so isolated in our busy lives and in our big houses and caught up with our technology or whatever. We need community as a species, and so do it before you need it. I think that's critical.

Diane Chew: 30:38

And then you know also, again, one of the ways to ask for help. If you find yourself, like I did, in an emergency situation where you don't have, like I did not have time to look things up online, ask someone to do it for you. My sister lives in Florida. She really, really wanted to help and she actually started to do some digging for me and she came across the Dementia Society of America, which I didn't even know existed. We hear about Alzheimer's is much more well known, but they were great. They sent a lot of good information. They happened to be based near me. The headquarters, the national headquarters, is only about 20 minutes away. So I mean, she did some things like that for me. So again, it's like ask for help and, to the degree that you can be specific in what would help you, that can help other people.

Michele Folan: 31:33

You had mentioned earlier too, that you were really hoping that there would be more support out there, and so I know that's something you're super passionate about. You think that's a torch you're going to carry forward in terms of advocacy.

Diane Chew: 31:54

I will in whatever way I can. I mean, obviously, you know this is even even starting. This journey on social media is still so new for me, because I've all this is where we're in May of 20. I just only started posting in January. I had no idea what I was doing. So, oh, my seriously, Seriously, I'm not kidding, and I was rather judgmental about social media. I called Facebook waste book. I did. I was like I think I posted twice in 20 years and I got the God nudge in June of last year to start to share our journey.

Diane Chew: 32:32

And it really came when I was frankly panicking about money. I mean, I felt like I was bleeding money because I fell in that zone where, you know, we made too much money for, like, medicaid and not enough for what I was paying to be sustainable, and we live in a house that's too big, but who's got time to move? Like, are you kidding me? You know. So I was really really scared and I was walking along one day and I was crying out to God and I'm like, what am I going to do? And I'm trying to figure out how I can take over more of Ben's care and I'm thinking, oh, my God, you know, I was scared for my own health and what was I going to do and I don't usually have conversations like this with God but I heard a clear voice in my head. He said, diane, are you thinking in an expansive way or a constricted way? Okay, well, I feel pretty constructed right now.

Diane Chew: 33:31

It's like, yeah, well, I'm a God of expansion. Now it's like, yeah, well, am I? I'm a god of expansion? What's the most expanded thing you can think of? I'm like like, I don't know. Do you want me to get a job? I don't have time to get a job. Like you know, I'm gonna be 69. My god, what do you want me to do? And you say, yeah, come on, keep thinking. I'm like, what? Like the internet? Well, yeah, yeah, like I want you to share your journey on social media. I'm going no way. A I had no idea how to do it and it was like this is too personal and too private. There is no, no, no way.

Michele Folan: 34:09

So I, I I'm laughing only because you're like I'm too old to do this. Oh internet, I had no idea Social media Like no.

Diane Chew: 34:20

You know, I had a 19-year-old caregiver who was working with us at the time and she was trying to show me how to do things on TikTok and I'm like, how do you make it stop? It keeps coming at you, you know, and she's trying to show me how you go to your profile and you can stop it. I'm like, okay, you know. So I was kicking and screaming for literally like seven months and finally I was like, okay, it just kept nudging and nudging and I felt like I had to do something, like I didn't know what else to do with myself. Honestly, you know I I would have somebody here taking care of Ben. I didn't know what to do. It was crazy. So I started sharing on social media and I actually I'm Dementia Coach Diane on Instagram, TikTok, YouTube and, Facebook well, Facebook and Instagram are connected and I just started on Twitter as well. I'm just learning how to do that now called X.

Michele Folan: 35:16

Now, Diane, we're never too old and it's never too late. That's my mantra.

Diane Chew: 35:23

Sister on this podcast, right, obviously you know, and I mean I'm laughing because I'm telling you, Michele, three months, I mean all I did was just I'm just posting videos, right, I don't know what I'm doing. I have my little routine, you know, and we had over a hundred thousand followers. I'm like what? And the funny thing is I was focusing on TikTok because that's where it seemed like all the action was supposed to be, you know, and meanwhile Instagram was, was growing and I didn't know it. And somebody said, oh, you know, your account's doing really well on Instagram. I'm like, really, and I went over and you know, we had like there's like 40,000 followers over here. I'm like, oh my gosh, yeah, we had like over a hundred in three months.

Diane Chew: 36:05

And so a long-winded little digression from your question I am passionate now that I've gotten to feel like my followers on all the platforms are my besties, they're my extended family, they're the ones that are walking this journey with me, whether they're actually in a caregiving role or just rooting me on. I mean, any time of the day or night I pop on there and try to answer. There's no way I can answer all the comments, but I get on and I always pray please help me to reach out to someone that really needs it right now. Today, and you know, and I've been interacting, I started a newsletter, people have been sending me emails and I do my best to get back to them, and so, yes, I feel like this is my new coaching passion, you know, and I will be an advocate for caregivers certainly for the rest of my life either but I would love to get the government's attention about the needs, not only, as I said, for dementia care, but for the caregivers, both financially and medically.

Michele Folan: 37:23

I think that the point of the respite care for that break, that's kind of your self-care. What does self-care mean to you now?

Diane Chew: 37:34

It's a really good question. It's really something that it's really whatever will bring me inner peace on any given day, and it may look different on different days. Sleep is probably, like I said is, a non-negotiable For me. I could take over sooner in the morning with Ben, but I really benefit from prayer meditation in the morning. It really sets me up for the day. I need to connect to something bigger than my thoughts and feelings and remember that, no matter what circumstances happen, I am never alone, so I reconnect with my creator. Circumstances happen. I am never alone, so I reconnect with my creator.

Diane Chew: 38:17

Making the decision to buy flowers for the back deck was another huge self-care. Sometimes it feels like, oh my gosh, you're spending more money and there's one more thing to take care of. But I walk down every day and these beautiful blooms they greet us all. Ben loves them. My care partners love them. Ben loves them. My care partners love them, you know. So that it brings me joy, certainly just every once in a while, having lunch with a friend or a family member where we can just I can just listen to what's going on with them.

Diane Chew: 38:49

I don't want to always talk about myself and what's going on.

Diane Chew: 38:50

I appreciate it when they're willing to listen if I need to vent but just to be with somebody else and have an experience outside of my day-to-day. So, as I said, I think it varies so much because on other days I have a lot I want to say to my community. I'm like oh, I've got about five videos that I'd really love to make. I rarely ever get a chance to do all five, but you know. So sometimes, as I said, that's self-care. I believe we will be guided to whatever self-care means on a given day, and I want to say that if there's anybody out there that maybe finally does have some help and doesn't know what to do with themselves, that's perfectly natural, because that's what happened to me. I'd be like I don't know. I don't know what's going to feel good, and there's a part of me that feels like I have to be productive because I'm paying somebody or I have to get really relaxed. Just being with yourself and having that be enough is probably the best advice I can give.

Michele Folan: 39:53

Yeah, well said, I would love to know where people can find you if they want to find Dementia Coach Diane.

Diane Chew: 40:03

My website and I like to say our website, because this is really, this is Ben and me is www. dementiacoachdiane. com. If you're on Instagram, there's a link in my profile and actually, there's a link in my profile, I think, across all the platforms, but it's Dementia Coach Diane on TikTok, Instagram, Facebook and YouTube. On Twitter it's Dementia Coach D, because the other name was too long, but it's at Dementia.

Diane Chew: 40:40

Coach Diane, I know at Dementia Coach Diane on the four platforms and DementiaCoachDianecom is our website so they can sign up for a newsletter on my website and I am only doing one like once a week right now, but it's the best way to stay informed of what's coming down the pike. I've only had one special guest so far on my live Instagram, but she was wonderful and I'll probably have her back. Catherine Golden was from an organization called Leaf411. It's a hotline of nurses trained in the use of cannabis if that's something that people are considering for themselves or their loved ones honestly and I have a hospice nurse who's going to be coming on in June. I'm hoping to get a neurologist and anybody else that my followers would like to hear from. I'm going to try to get them on as special guests and the newsletter is the best way to know when those guests are planned so they don't miss the live events.

Michele Folan: 41:40

Yeah, very good, very good. I will put all of that in the show notes. Diane, it was great meeting you. Thank you for being on Asking for a Friend.

Diane Chew: 41:49

I really appreciate it. God bless you and your work. Good work for yourself, thank you, thank you.

Michele Folan: 41:59

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