62: When a Family Member is Diagnosed with Long-Term Illness | Alex Winstanley

Mothers of Misfits Episode 62 Alex Winstanley

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Growing up, Alex Winstanley watched his grandmother struggle with dementia. Inspired to help other kids deal with a family member’s long-term illness, he wrote two children’s books entitled, “My Grandmother Has Dementia” and “My Uncle Has Depression.” Alex and Emily talk about how to support our kids – and ourselves – through these difficult experiences.

  • “I think children, whilst they’ll understand certain conditions, I find that children can be far more accepting because they might not understand.” – Alex Winstanley
  • “Involve kids as much as possible in learning about the condition and also learning from people with lived experience of that condition.” – Alex Winstanley
  • 1:29 – My Grandma Has Dementia
  • 3:02 – My Uncle Has Depression
  • 4:34 – The difference in how adults and children process the diagnosis of a family member
  • 6:43 – How parents can help their kids process the situation
  • 8:01 – What should parents say when they don’t know what to say
  • 13:39 – Creating a world where everyone is valued and celebrated
  • 18:53 – Find Alex’s books
View Full Transcript

Episode 62 – Alex Winstanley

Mothers of Misfits: Welcome to the Mothers of Misfits podcast. Join me for conversations about how to advocate for our kids in a one size fits all world. Be sure to subscribe, so you never miss an episode.

[00:00:17]Emily Melious: Welcome back everybody. So glad you are here for another episode of the Mothers of Misfits podcast. We’re talking to Alex Winstanley today. He’s an author and social entrepreneur. He writes children’s books to raise awareness of long-term health conditions with the aim to reduce the anxieties that children may experience when a family member is living with a long-term health condition. Alex, thank you so much for coming on today.

[00:00:43] Alex Winstanley: Hi, thanks for having me, Emily. Really appreciates it.

[00:00:46] Emily Melious: Sure thing. Well, I was just saying to you that I think we touched on this topic in our episodes in the past, but really haven’t focused on it. And you actually reached out to me and I’m so glad that you did, because this is a very shared experience. I would venture to say that probably just about every family deals with this in some form. And parents I’m sure are asking the questions about how do we handle this ourselves, but then how do we help our kids through what can be a really difficult experience?

[00:01:22] Alex Winstanley: Yeah, no definitely. That’s definitely one of the reasons why I started to write the book. So a hundred percent I agree.

[00:01:29] Emily Melious: So on that note, why don’t you share with us what your inspiration was behind your first book and the title of which is My Grandma Has Dementia.

[00:01:38]Alex Winstanley: Sure. Yeah so as the title suggests, my grandma had dementia, she lived with dementia. Growing up as a child and a young person, I didn’t quite always understand some of the things, like my grandma’s behaviors, the questions she was asking. And as I got older that got worse and more noticeable. So, it’s something that I’ve always wanted to do. And I always spoke to my mom about doing it. And it’s just something that happened last year because of everything going on. I had more time and was able to start doing that. So, it’s something that I wanted to write just to try and as you said, relieve the anxieties for children and young people who might have a family member living with dementia, and the other long-term health conditions that we’ll talk about. But, particularly the dementia book, obviously it’s very personal to me and I wrote that about my grandma and my grandma passed away just before Christmas.

[00:02:28]So she wasn’t able to see the book. She knew about it and she knew it was happening. And obviously she would have forgotten, but I reminded her whenever I spoke to her online or over the phone, or sometimes through the window because of COVID. It’s amazing talking about legacy and to know that my grandma’s legacy is living on through the book and impacting people worldwide. It’s fantastic, and it’s definitely helped with the grieving process. We’ve had pictures from young women in San Francisco who were 13, who would pick the book, and children and young people in Canada and, you know, there’s a charity in Wisconsin that just bought a hundred copies. Things like that is amazing. So yeah, really, really pleased.

[00:03:02] Emily Melious: So your second book, tell us about that cause I think, like you said, that just came out, right?

[00:03:09]Alex Winstanley: Right. So, the second book is about depression. It’s called My Uncle Has Depression. And that was inspired by someone I know who was bipolar. But also, I’m very sporty and I like watching different sports, especially rugby in the UK. And I know a lot of professional rugby players have lived with depression. And the thought behind that book was, I hear stories all the time about professional sports, people who retire from sport or live with depression whilst playing sport, and people don’t see that side of sportspeople, especially fans. So I just thought, imagine if children and young people can see a great big rugby players, from Nick, the guy in the book. But if they can see that, then surely anyone can have mental health challenges. So, that’s something that inspired this book. So that’s out now on Amazon as well, which is super exciting.

[00:04:00] Emily Melious: And what’s great is these books are approachable conversation starters. As a parent, I know that those difficult conversations are difficult for a reason. That’s why we say that they’re hard because it’s like you don’t know how to approach it, you’re really not sure how to guide your kids, you don’t know how much to tell them, what not to share with them, how to prepare them for what you know is going to be difficult, and all the while these are things that we’re wrestling with and figuring out how to deal with. I’m sure your parents were struggling with your grandma’s diagnosis and the process that she went through.

[00:04:34] So I’m curious to get your thoughts on, is there a difference in how adults and children process the diagnosis of a long-term health condition in a family member?

[00:04:45]Alex Winstanley: That’s a great question. Yeah, and I think my view is that there’s definitely a difference because I think children whilst they’ll understand certain conditions, I find that children can be far more accepting because they might not understand. So, I’ll give you an example. I run a nonprofit organization and we deliver disability awareness training across schools and community groups and businesses, and we work with children and young people right through to adults. But if you imagine adults already have a preconception in their head of what certain disabilities are or what people living with certain disabilities might look like or act like, and the same with health conditions like depression or dementia. Whereas children, you know, they might be able to learn about it, but I just find it a far more open and accepting, and I’ve seen the people that work with the disabled young people who deliver our training, and they’ve got family members who’ve grown up with them who don’t see the disability, they just see the person because they’ve grown up with them there. And I think when children grow up learning about different conditions like this in such a way, I think they’re able to build their own picture of what that condition looks like. And I just find it’s far more accepting and positive of that of an adult. And just one other example is, I mean, one of the reasons why we set up Happy Smiles, which is a training organization, myself and one of the men I cared for, Hayden. We were in a theme park in Florida and a little girl walked past and the little girl said daddy, why’s that man in a wheelchair? And the dad just ignored it. And I find that kids want to have those conversations, but adults don’t always, like you said before, because they can be difficult conversations, whereas kids are super curious, and I think we should feed that curiosity with positive and supportive knowledge. So that’s hopefully what the books are doing.

[00:06:29] Emily Melious: Yeah, so you’re teaching me that that difficult conversation is difficult for the parents oftentimes much more so than for the child. So the reservations really are in our minds and our emotions. So how can parents help their kids process this situation, this diagnosis in a healthy way?

[00:06:50]Alex Winstanley: Great question. I think for me, and I think to involve kids as much as possible in learning about the condition and also learning something I’m very passionate about is learning from people with lived experience of that condition. So, for example with the dementia book, I’d experienced my grandma having dementia. And I experienced it from my point of view, but, you know, the book is written also from her points of view. And I’ve also consulted other people living with dementia and carers of people living with dementia, to try and get different viewpoints. And I think the more, as parents, we can involve children in speaking to and learning from people with lived experience of those conditions, the better, because that’s where you’re going to really learn what people’s experiences are like.

[00:07:36] Emily Melious: And as you said before, feeding that curiosity. So being open to your kids’ questions and being willing to say, I don’t have an answer or let’s go find an answer together or let’s go talk to somebody, rather than dismissing, even unintentionally. You know, I think sometimes we don’t mean to dismiss the curiosity but it can happen, or it can come back to parents just really not knowing what to say.

[00:08:01] And what do you suggest to parents who feel that way? If they’re still processing or they’re still really emotional and grieving the news? There’s a lot of heavy weighty emotions and we may not be ready to talk about it yet with our kids as parents. So what should parents do if they don’t know what to say?

[00:08:22]Alex Winstanley: I think you hit the nail on the head, Emily, when you said about being honest and open, and if we can say to children, look, I don’t have the answers. I don’t have all the answers right now, but let’s find them out and let’s find them out together. I’ll even, you know, involving the child in that discussion of, how do you think we can find these answers out? Because again, that feeds the curiosity and empowers children to be involved in that decision-making, which you know, is really nice for them to be involved with. And I know from my experiences with my mom, with my grandma, my mom was my grandma’s sole carer for 30 years.

[00:08:58] And she would sometimes visit in her house, three, four times a day. And I saw the toll that that took on my mom. And as I got older, I realized more and more how difficult that was for mom, because she had no support really from social workers or anything. There was nothing like that. And I still don’t think there’s much support like that out there. So I think, especially for adults, if you’re struggling to speak to children and how to explain it, I found a really good resource is trying to find a local support group of other adults who might be struggling in the same way, because I’ve just found that getting my mom to speak about her experiences and feelings is still difficult, but it’s got easier.

[00:09:34] The more I’ve, almost forced her to talk cause I’ve got older and we’ve spoke about, I mean, we’ve sort of lived through a lot of these experiences of caring for my grandma together. And one of the big challenges, for example, a huge emotional challenge was putting my grandma into a care home, because my grandma lived on her own for years. And we thought that was the best thing for her. And then she lived with us for a year to 18 months. And again, we were trying to do the best thing, but now looking back, we were actually killing her with kindness. She was safe and well, but she wasn’t stimulated.

[00:10:03]Whereas when she moved into the care home, she lived the past two years of her life and two of the best years, because she had an amazing community around her. It was incredible. The staff were incredible and we were very, very lucky. And not everyone’s so lucky with care facilities. I know there’s some really poor facilities and workers and someone said to me, in fact, I feel like care homes are like a jail. And I said, well, I appreciate that, but my grandma’s experiences were very positive. And for me, as you can see in the book, the care home scene is very diverse, and including children and older people of different backgrounds, disabled and non-disabled people.

[00:10:39] And that’s where I want to show our children. I want to read it through the books, I only really promote a real equal and diverse society. Almost looking at like, what society should look like sometimes. So that’s also the aim with the books as well. But I think definitely coming back to your question, if parents are struggling to have those conversations, definitely look for a local support group because I promise you there’ll be other people struggling in the same way, because as you say, that there just always are. Across the world I think with dementia, for example, someone is impacted by dementia every three seconds. In the UK alone, someone develops dementia every three minutes. So, it impacts far more people than we probably realize, as you say. So the more we can find other people to talk to the better.

[00:11:22] Emily Melious: I think as parents, our instinct is often to protect our kids from those raw intense emotions. But I’m being reminded by this conversation with you that that could actually have the opposite effect. We could be hurting our kids by not being vulnerable, which is hard, about the highs and lows in what we’re going through and being an example for them, as to how to be open about our emotions, to feel the feels, so to speak.

[00:11:57] To communicate about those, and really just to be imperfect in front of our kids, and modeling that so they learn how to process that in a tough but healthy way, because they are inevitably going to experience these things themselves at some point, or again, depending on how old they are and how much they are aware of what’s going on in this situation with that family member, if they’re on the older side, they’re probably feeling a lot of those same things too, and will be looking to you as a parent for cues about how to process all of this, how to talk about it. And us getting help also is a great example that they can get help. And that’s an okay thing to ask for.

[00:12:44] Alex Winstanley: A hundred percent, and that’s how it links in, I guess, to my book on depression. That is definitely, you know, that book talks a lot about, is okay to not feel okay. I’m a new father now and, yeah, four weeks old. Yeah, so, but she’s amazing but, you know for me, I really want to be able to show my daughter that it’s okay to not always be okay. And it’s good to talk, and it’s good to share and show emotions. Because I know I wear my heart on my sleeve a lot and show my emotion. I know my father who, my dad’s from a different generation where you didn’t show your emotions. So, you know, he’s very different to me and I can’t help it. That’s the way I am. And I show my emotion and I think the more we can show our children and young people that, then great. And at the same time, the more we can just expose children and young people to diversity, to different people with different experiences, you know, and whether it’s race, gender, disability, across the board, for me, the better.

[00:13:39] Emily Melious: On that note, as everyone can hear, you are clearly passionate about promoting a diverse and inclusive society. And you talk about wanting every person to feel valued and celebrated, which makes me want to just jump up and clap because I’m so on board. I mean, that’s exactly what Mothers of Misfits is all about. It’s really celebrating the fact that we’re all misfits in some way. Still though, the world can sometimes operate in that one size fits all mentality, which is a struggle. And I’m curious to hear from you, what are some easy actions that each of us can take to create that world in which everyone is valued and celebrated?

[00:14:26]Alex Winstanley: Yeah. I think the first thing that springs to mind with that question is language. I think the more we can make our language inclusive, the better. So for example, when we’re delivering training around disability awareness and social inclusion, we will talk about, as a carer for example, I would never refer to the people that I was caring for as clients. But instead I would use their names, or, you know, use the word people, because they are people. Everyone’s a person, who as you say, should be valued. And I think a real easy fix to start with is just addressing our language, is reflecting on what language am I using? Is it positive? Is it negative when I’m describing somebody? And not just derogatory terms. Obviously there’s a lot of derogatory terms that people still, through misunderstanding still use. Sometimes don’t realize unfortunately that they’re using them, that can have a real impact on people. But if people can just address and assess the language that they’re using, and think, right well how would that word maybe make someone feel if I was using that and what could I use as an alternative? A little example is I’ve stopped saying the word crazy. Like when someone says, oh that’s crazy. Even that I think, well, you know what? Someone might find that offensive, and I don’t want to offend someone by saying the word crazy.

[00:15:37] And I understand that it’s difficult to sort of withhold all terms and language that we use, but I feel like as a society worldwide, we’re getting better at using certain language, and I’ll give you an example. Some of my relatives, my Nana and my grandad, they sometimes say to me, so Hayden, who I work with through Happy Smiles, they’ll say, and what’s wrong with Hayden again?

[00:15:59] And I always say, Nana of there’s nothing wrong with Hayden. You know, he cerebral palsy, but there’s nothing wrong with him. He’s one of the happiest people that I know, and he has a great life, and far better than many, many people. So I think questions like that, phrases like that, I think if we can think about the language you’re using, I think that’s a big step.

[00:16:18] Emily Melious: And again, the language we use is often the language that our kids end up using. So important that we set that example and help them think about the words that they’re using. We talk so much on Mothers of Misfits about being very careful about words and labels. And I found through this podcast and have really appreciated that when I’m not sure what words to use, and sometimes it’s not even a matter of positive or negative, it’s just, you know, what would you like? And I’ve asked guests, you know, how would you like me to refer to this or that? Or how would you like to talk about this? And I’ve been so humbled by and appreciative of the fact that everyone’s been so patient and helpful, and they don’t mind the question.

[00:17:11] In fact, they usually say, thanks for asking, you know, thanks for caring enough to ask. And they help me get the right words. And I know sometimes there’s some disagreement, we’ve had guests that have felt differently about the same term, but asking, you know, how would you like your condition to be referred to, or how would you like to talk about this, or even the concept of special needs or disabilities.

[00:17:32] There’s a lot of discussion around that, and just ask. And I’ve never had someone get offended for me asking or say, I’m not going to help you, you know, and that’s been relieving to me because I may not have all the answers, but that person is happy to share with you what they feel most comfortable with.

[00:17:50]Alex Winstanley: Yeah. And I think it comes back to showing that vulnerability and not acting like you know everything. You know, we don’t know everything as much as we like to, but I think it’d be a pretty boring world if everyone knew everything. And, for example, I was delivering some training this morning with a university, with some university trainee teachers. And one of the people that were delivering our training who’s a wheelchair user and has cerebral palsy and he said, my entire life when I was in school, people assumed what was best for me instead of asking me the question.   And, he said the best thing you can do is just ask, is ask, what do I want, or what do I need, what would work?

[00:18:24]So I think you’re exactly right there with what you’re saying, Emily, in terms of involving people in that conversation. I think it comes back to, like I say, involving children and young people in the conversation. I honestly believe the more you can expose children and young people to difference, diversity, disability, et cetera, the better because, you know, the more whole of a society we will have.

[00:18:44] Emily Melious: I love your vision, and I can’t wait to see how your little girl grows up and she’s got an amazing daddy. So tell us one more time how people can get ahold of your books.

[00:18:57]Alex Winstanley: So the books are available on Amazon worldwide now. So, if you type in My Grandma Has Dementia, or My Uncle Has Depression, they’re now a part of a series, The My. Has. series. And for example, the following book after the depression book is My Brother Has Cancer. And that’s based on my brother’s experiences of cancer and all sorts of friends’ experiences.

[00:19:18] And that’s a really difficult topic, again, and a difficult conversation to have, because especially for children and young people, this book’s going to reference loss. And this was a challenge for Adam and I to, we’re just working on it now in terms of the illustrations, but as you can see from the books, they’re very positive and colorful and inviting, engaging images and scenes. At the time  we had to wonder how do we make depression and cancer positive get it across in that supportive way, and while it’s being realistic, and it was a real challenge, but I think we’ve done a great job and Adam’s definitely done a great job. And yeah, I think if people are available, like I said, on Amazon, and if people use social media, my handle is Alex Winstanley author on Facebook and Instagram.

[00:20:01] And on Twitter, it’s @AlexWAuthor. So if people follow me on there, always posting on there about the books and at the same time with our organization, Happy Smiles. We’re also posting about the books and using them all the time in schools now. So, you know, if people want to see our work there that’s www.happysmilestraining.co.uk, or at Happy Smiles Training CIC on Facebook and Instagram, and at Happy Smiles CIC on Twitter.

[00:20:24] Emily Melious: I love everything that you’re doing and you again are clearly so passionate about this and you live that out every day. I admire it. I cannot wait to order those books for myself and my family. I’ll also say to everyone listening that we’re going to share all of those links in our episode insider newsletter.

[00:20:44] If you didn’t capture all of that as Alex was saying it, not to worry, we can have it delivered to your inbox. Just make sure that you sign up to receive those emails by going to mothersofmisfits.com, scroll to the bottom of the page, you can sign up there and now you’ll get insider information on all of our guests like Alex. So Alex, I can’t thank you enough for helping us conquer a tough issue today, but I’ve learned so much and I know everybody listening has as well. Thanks again.

[00:21:13]Alex Winstanley: Thank you, Emily. I really appreciate it. Thanks for your time.

[00:21:16] Mothers of Misfits: Thanks for joining us for this episode of the Mothers of Misfits podcast. Make sure to subscribe, so you never miss an episode. We also invite you to visit us at MothersOfMisfits.com.



Emily Melious

Emily Melious

Talent Management Consultant | Career Coach | Podcast Host

Alex Winstanley

Alex Winstanley

Social Entrepreneur | Teacher | Author

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