Transcript
[Beginning of recorded material]
[Title card: Talking dementia]
Nicole: Two of us have a parent with dementia.
Danielle: Four of us have a grandparent with dementia.
Charlie: Two of us live with a person with dementia.
Mikayla: And three of us have had to watch our loved one go into residential care.
Danielle: Two of us are bereaved by dementia.
Sam: Two of us felt that our families tried to protect us from knowing about the dementia.
Anna: But both of us had already worked out that something was wrong.
Nicola: Two of us have found that our siblings react differently than we do.
Danielle: And three of us have felt alone in our experience.
Charlie: Only two of us knew much about dementia before it happened to someone we love.
Mikayla: And only three of us have found it easy to get support.
Nicola: Four of us have felt the impact on our friendships.
Charlie: All of us have felt the impact on our family relationships.
Sam: None of us identify as young carers.
Anna: Three of us have felt the impact on our education or work.
Mikayla: But all of us have been ...
Sam: ... And continue to be ...
Anna: ... impacted by dementia in our families.
[Title card: Their dementia, my life]
[Charlie, 19, Grandmother has dementia]
Charlie: My grandmother has dementia. She was diagnosed a couple of years ago, she lives next door to us.
[Anna, 23, Mother has dementia]
Anna: My mum has dementia, well, early-onset Alzheimer's. She was diagnosed, I think, it was about four years ago now. I live at home with her, with my dad, I'm an only child. My fiance moved in with us to help. I look after her full-time as my job. Yeah, it's pretty full-on, but I didn't want to have any regrets in the future. My mum's mum had dementia later in life, but she always regretted not being able to take her in and look after her. I didn't want to have the same regrets as she does, so that's why I'm doing it.
[Text: Danielle, 19, Grandmother has dementia]
Danielle: A few years ago, when I was in year 11, I think, she was diagnosed. She was moved to a home quite close to us to start off with, it was just a general, elderly aged-care home, now she's moved to a home specifically for Alzheimer's and dementia.
[Text: Mikayla, 20, Grandmother’s partner has dementia.]
Mikayla: I came into a household not understanding anything about dementia and how it affects people and families. Coming into my grandmother's home and the way that she lives day-by-day, spontaneously trying to understand the man that she loved, living with it for a couple of years, seeing her go so quickly downhill, it's definitely a journey, and it's definitely a challenge, but you do. You grow in it, and you do get through it, definitely.
[Text: Sam, 18. Grandfather had dementia]
Sam: My granddad had dementia. He passed away, I think, three years ago, when I was in year 11, the start of year 11. So throughout my whole high school, and the later years of primary school, he had dementia. He was diagnosed when, I think, I was in year five. Had that as another thing that I was going through while I was going through high school. We were lucky in the fact that he lives directly across the road from us, so we didn't have to travel. We were able to see him daily, and help him daily, and we were able to keep him in his house, which I think was a major benefit for him, and for us being able to see him as regular as we could.
[Text: Nicola, 22, Mother has dementia]
Nicola: My mum is now 57 years old, and she was diagnosed with dementia around about age 50, while I was in year 12. It was quite difficult at the time, with the high demands of high school, and trying to get through that, and having to worry about family situations at the same time was quite difficult for me, and the rest of my family. She now resides in a high-level facility, but yeah, it's a journey that I'm going on with my mum and the rest of my family, actually, it's quite interesting and challenging at times, but it's nice to have your family come together and do it as one.
[Title card: How has your relationship with the person with dementia changed?]
Sam: Up until year five, six, seven, I was going over to granddad's place every day after school, because mum would work late, and dad didn't live with us at the time. I'd go over to granddad's place when my grandma was still there, and they'd feed me and my brother. We'd sit down and watch television, and they'd kind of encourage us to do homework, stuff like that, and then it kind of, just, slowly swapped, and me and my brother would go over there every evening and make sure that granddad was eating, make sure in the summertime, he didn't have too many clothes on, which he tended to do. Just kind of make sure he was comfortable. Make sure he was all set up for the evening and wasn't going to get confused and stuff. So, it kind of swapped, the relationship.
Nicola: Yeah, I feel like it all happened really quickly. From the time she was diagnosed up until now, it's just progressed very rapidly. And so, your typical mother-daughter relationship is, you shouldn't do it, but you compare it to your friends and the relationships they have with their parents, and it's as though our roles have changed. It's quite confronting at times, but you learn to connect with them in different ways than what you had previously. It doesn't have to be verbal communication, but you learn to do other things like connect with them through music, and other wonderful things like that.
Anna: I can totally understand your situations. It's very odd the way the relationship changes. As growing up, my dad was always away for work, and it was just me and mum, always. And she would always look after me, she'd do anything for me, and then it all changes, and it's really confronting and hard.
Charlie: My grandmother got older. She stopped looking after me, and I started looking after her more. Sort of got to make sure she's cleaning out the fridge, make sure it's all good. She doesn't lock her doors, really, at all, at night. Little small things that add up.
Mikayla: I did find, over the time that he had dementia and developed, that he had different parts of his personality come out. Some good, some bad, some funny, some… a bit of a rollercoaster. But, I think, over time, you get to know every single part of the person.
Sam: Even as he deteriorated, his personality never changed, and he was always still the same granddad that I always had.
Anna: I found, for me, my mum was a completely different person. Not even the tiniest bit like how she was.
Nicola: Yeah, I agree with you, Anna. My mum is completely different to how she used to be. It's sad, but at the same time, sometimes, it actually helps me deal with it a lot easier if I think of her as a different person. She's always going to be my mum and always will be. But it's nice getting to know the newer person she is today, and going along that journey with her.
[Title card: What has been hard for you?]
Anna: I feel like, for me, I think I was more worried about myself, at first. I was very selfish then, I was like, "Oh, what am I going to do, and how's this going to affect me?"
Charlie: It's kind of scary, like going down a rabbit hole, you don't know where it ends. Apart from that, it's a pretty bit reserved.
Anna: You push it away a bit?
Charlie: Not personally. More, I have lots of family to support, it's equally distributed. I'm sure it'd be a lot harder for you being one-on-one, or two-on-one.
Anna: I don't think you can compare it. I think it's just different.
Charlie: Definitely.
Anna: Because, I've been through the grandparent side of it, and that's really hard. It's just so different it being a parent, but it doesn't take away from how hard a grandparent is, because you can be so close to your grandparents, like you live with your grandmother.
Mikayla: When you're with it, you go home to it, you've got it there when you wake up, and it's part of your lifestyle, you live with it.
Nicola: I think, initially, it's very frustrating, and you feel like you're alone, and not many people are around you that understand what you're going through, but it's kind of hard to deal with it, because it's like when she was first diagnosed, you go through a grieving process, and when you go and visit them and you want to be as involved as you can in their life, it's really difficult because you're constantly reminded that your mum isn't really like everyone else's.
Danielle: It's hard going to where she is now. You have to walk in there, and it's sort of a certain smell, or certain atmosphere, and they're all sitting together, usually, in the same spot every time. No one remembers you, and sort of, "Oh, hi there." And they'll be like, "Who are you?" and all of this. It's a bit confronting to go in there and visit. It's hard. It's not a pleasant experience, ever, really. I know my brothers, really, they try and sort of avoid it a bit. They don't really enjoy going in there and visiting.
Nicola: I think everyone deals with things differently. My brother is similar in that sense. Not all of us cope with it the same. Sometimes, it's easier for us to distance ourselves for things that are emotionally difficult for us, but we all understand in different ways, and learn to cope with it differently.
Anna: I was going to say before, when you were saying about other people, their mums, watching them have a relationship with their parents, I get so jealous. Really jealous. Especially when you see people who have an opportunity to be really close, sorry.
Nicola: I was really worried about the unknown. I felt like when she was diagnosed that they didn't really give us much direction in terms of what's going to happen in the next 2 years, 5 years, 10 years. But, I did find out that they said that anyone from diagnosis can live from 5 to 20 years, and when you hear that, that's just a ridiculous timeframe, and you don't really know what to expect in the time in between. It's quite difficult. Just like every story is different, so I felt like all I wanted to do is find out answers, and, "Just tell me straight up, what's going on, what I'm going to expect, and the things that I can watch happen to my mum," but they weren't able to tell me definite answers, and I found that quite difficult and really scary, not knowing what's going to happen.
Charlie: It's exactly the same, really. Fear of the unknown is sort of the main thing to start with, and then, you become more familiar with the situation, it sort of helps with it a bit.
[Title card: How have other areas of your life been impacted?]
Charlie: I’d say that I worry about my nan more than I would normally. Apart from that, it doesn't impact too much in my case. But still, that thought of, "Is she all right? Is anyone looking after her at home?"
Nicola: I think during the time that my mum was diagnosed, it impacted quite a lot on my education while I was finishing year 12, but it soon became a matter of just getting through the year rather than excelling in my final year. At the end of the day, I still got to where I want to be, and I'm still studying. Studying osteopathy in the healthcare system, your coordinators and teachers understand your situation more than anyone will ever, so that makes it really, really helpful that they're very supportive of me, and they all know that my family comes first. It's really nice to have them around and have such support from a university.
Anna: Yeah, I found that. Well, I had to leave my job to look after mum, but it's definitely impacted my education. I've had to put off graduating by a year. I'm studying education, primary teaching, but I think also because of the field I'm going into, a lot of my teachers are really understanding. If you are up front at the start of the trimester and say, "Look, this is what I'm dealing with, this is how it affects my study." They're really understanding, and they'll practically bend over backwards to make you pass, basically. They help you get through. I've got a learning access plan, so, basically, they have on file everything I've gone through, and then they pass that along if my teachers request it. What I've let my teachers know is I have got this set up. They'll have a look, and they've got my whole file. Because, it can be quite emotional. You've got a different teacher for every class, and then you've got to explain your whole life story every time, so that's really helpful.
[Title card: Families: different reactions, different roles]
Nicola: I think it's only natural that when something occurs, that you usually have one or two people that step up and take responsibility. A few members of my family have taken on the legalities, and organised medical power of attorneys, and things like that, but it takes some more time for some people to come to terms with what's happening in their life, and if they need that extra time to take it in and understand it, then you can't beat them up about it, because everyone does take things in differently and understand things differently. Really, you can just focus on what you are doing for yourself.
Charlie: I sort of worry for my younger cousins, because my nan looked after me a lot when I was younger. When I was four or five, my parents were working. My youngest cousin is that age now, and he's not going to have any memory of her before the dementia.
Anna: I feel that with my mum's mum. Because, all of my cousins, they all have kids almost my age, so I was a lot younger. I never got to, because she had dementia as well, so I never had all the memories that they have. One of my cousins said she used to go out, she'd stay with our nanny. She'd come home, and they'd like talk about her night out, and she might have kissed a boy, and it was all like, "She was a cheeky woman," and I cannot remember her like that, I don't have that memory of her, so I can see what you mean with your cousins.
Sam: Yeah, me and my brother kind of just took on an almost accessory role to mum, who was primary caregiver to granddad. Being just across the road, we were able to help her out with a lot of the physical stuff, like helping him get his dinner sorted, and making sure stuff was washed for him, his house was clean, and everything was orderly, and neat, and stuff. She did a lot of that stuff, as well, but she was also having to deal with all the paperwork, the medications, and the admin part of things.
Mikayla: I knew that my nan was the rock. She was the one that was caring for him, and had to keep going and that sort of thing. I guess my job was to keep her going, sort of thing. Let her know, "Look, it's time. You can't look after him anymore. You need to do your own thing, as well." Sometimes, that's letting go.
[Title card: Getting through those tough moments with person with dementia]
Sam: When his wife moved out into residential care, he'd get really, really confused, and lost, and quite lonely, I think. And so, he'd call our home phone 15, 20 times in the space of an hour. It got to a point where we would have to go over and set him up, and just make him a dessert, or set up the TV so he had something on, and give him something to occupy himself. That would kind of settle him down for the night. Once we went over and sorted him out, he wouldn't call again. He'd go to sleep.
Anna: It depends on her mood. It depends on how big the tantrum is that she's throwing that is there in the supermarket. I'll ignore something she's saying, because I'm reading something, or I'm trying to find something. I always end up getting flustered being out with her. She'll just throw something on the ground, and cross her arms, and walk away in a huff. I've got to collect myself first, and go, "She's not doing that on purpose. She can't control her feelings." She's showing every feeling she has straight out, and I've just got to not care what people think. I'll be walking around home, and she'll hold my hand. So it's pretty obvious, now, for some people that there's something going on, but it can be very frustrating and embarrassing. I think the best way is to just not worry about it. Have a laugh when they do something funny. Go along with their stories. Otherwise, you get too caught up in yourself and how you look, and that's really not important in the long run.
Mikayla: I actually had a situation; my grandmother was being beaten by him at some stage. I had run downstairs, and I had to get him off her, somehow. I immediately reacted by saying something of habit. We went out for picnics a lot, and so I said, "We're going out for a picnic. We're getting in the car." Because, yelling his name, trying to pull him off her, and that sort of thing, it just did not work. So, me saying, "We're going on a picnic. Get in the car," he immediately just stopped, went to the car.
Anna: Yeah, I find distraction and diversion is really helpful. I could literally just be like, "Oh, look at that over there," and that'll break her out of that repetitive cycle of questions or arguments. Or another one is, if dad's not there, my dad and I have pretty much found that it goes, if I'm with mum, she'll constantly ask where dad is. If she's with dad, she'll constantly ask where I am. So I'll say, "Okay, let's go call dad." I'll get the phone, and I'll dial and put her on, and he'll just say, "Hi, I'll be home at this time," or "I'm just doing this." That'll just calm her down. Then I can use that for the next two hours of, "Remember, we just spoke to dad, and he's doing that." I can repeat everything that he said, and she might pick up on one of them, and go, "Yeah, I do remember that."
Charlie: I wouldn't say that my grandmother gets angry or screamy, but she does get very worked up.
Danielle: Or panic. Mine’s the same, yeah.
Charlie: Yeah, she panics. One of our strategies in my family is, and normally, it doesn't end up on purpose, it normally ends up with my parents sort of trying to enforce, "You need to do this, this is really important." And then, nana gets worked up, and then I end up going over there and doing sort of good cop, "This is a good idea. You don't have to do it if you don't want to." But, instead of help I kind of ... At least that's one thing that helped my family a bit.
Sam: My granddad, he wasn't so much aggressive, but he did, sometimes, say racially inappropriate things at times, because of growing up in 1940s Glasgow, and then coming to Australia, sometimes, what was politically correct kind of did escape him. It was lucky enough that people didn't hear him, and think, "What an asshole for saying stuff like that," because that wasn't him. He'd never go out to deliberately say something to offend someone.
Danielle: Grandma had the same problem. When you're walking down the streets with her and stuff, she'd like, "Oh, that person's had a bit too much to eat," or something like that. "Shhh". It's a bit hard, because she's little. She's about half my height, and just really sweet, and not like that at all. She doesn't look at people and judge them badly. But-
Anna: Does anyone here sometimes wish you could have a badge that they could wear?
Danielle: Yeah.
Anna: "It's okay. I have Alzheimer's. I'm not a rude person." All the time.
Charlie: I think you're very right. They sort of lose their filter, their ability to tell what an appropriate thing to say is.
Anna: Yeah, and to realise, also, it's not their fault. They don't mean to hurt you, or if they get aggressive, or angry at you and they're yelling at you, it's like, well that's not the person that you remember. That's a different version of them.
[Title card: Communication and connection]
Nicola: I feel like it's important that you don't lose the connection you had with them. Although it may be different, it's important to try and find different things that help you connect with them. My mum now doesn't really speak that much, she still recognises me, but she knows that I'm someone really close to her, but she's not exactly aware that I'm her daughter. But communicating verbally isn't everything with someone. I think it's really powerful when you can communicate with people. I always play music for my mum. Sometimes, it makes her laugh or cry, or bring back some sort of memory, which if it makes her cry, it's upsetting, but it's nice that she can bring back some sort of memory that she can associate that song to. If music is all we've got left, then I'm happy to be doing that.
Sam: Granddad just loved telling stories, like about back in Scotland, when he first moved over. Even though I'd heard him, I knew word for word, I'd just get him to tell me the stories, and he loved it. He genuinely enjoyed, in that moment, telling that story. And then, 20 minutes later, if he wanted to tell it again, I'd sit down and listen to it, because, he didn't remember that he'd told it 20 minutes ago, so he got the same enjoyment from telling me a few times in an evening, the same story.
Charlie: You probably will have the same conversation with this person, whoever your person is, multiple times.
Anna: If you do, you sit there and let them tell their stories, sometimes, you'll get this little moment of clarity, and they'll say something really important or interesting you didn't know about them, so that can be quite rewarding. Maybe good to have the patience to stick it out.
Charlie: Yeah, I found that my nana, she can't remember some very basic things because of the dementia, but then she'll pull something amazing out of her childhood. Just like, "How do you remember the smell in London when you were a kid?"
Anna: It's like you have these crystal clear memories of when you're a kid, but you don't know how to tie your shoe laces. It can be really baffling how that happens.
[Title card: What helps you?]
Anna: I think having an escape is important.
Mikayla: I agree.
Anna: If you don't have to live with them, being able to go home and have your own time. See, for me, I can't really get away. She's right there. Every morning, I wake up to her wedding ring scratching on my glass door. I'll be lying there. I'm like, "Oh no, please don't."
Mikayla: But you know it'll happen every morning.
Anna: Yeah.
Mikayla: Yeah.
Anna: But at the same time, I love that if she needs me, she knows where I am.
Danielle: It's not just you and them. It's sort of like a family thing. I know grandma and I used to be really close on our own, but it's sort of hard to go, “I can't really visit her on my own anymore.” Now, you've got mum there, you share the stories, and you can tell your mum the story, and grandma might be like, "Oh, I remember her and I baking cookies.”
Nicola: With my friends, it makes the relationship that I have with my friends and their family a lot closer. My best friend plays a really important part in my life, and her family has been great. They're very supportive. To spend time with my friends' families, it's nice to be in that family environment, both with my best friend's family and my partner's family, as well.
Anna: You feel very isolated and no one understands, but they can't understand unless you explain it to them. I think that's important. Tell your friends what you need, because people always be like, "I want to help." But then they'll step back because they don't know how to. But if you say specifically, "Oh, if you cooked one meal a night for my dad, that would be really helpful."
Nicola: I think, sometimes, you expect a lot from your friends to say, "How are you going?" But when someone asks you, "How are you going or how's your mum going?" it's a really difficult question to answer. While it might be difficult for us to answer, it might also be difficult for them to ask, because they don't want to hear the bad news, or hear something that may upset their friend. But if there's anything that you do need, it's important that you voice that, and let them know specifically if there's anything that they can do to help you.
[Title card: What have your learnt about yourself?]
Danielle: You learn that you've got lots of people there. My family, they've all been really good. I guess, at the start, they were kind of sheltering my brothers and I a bit. It sort of came quite a bit of a shock, because they didn't really tell us when she got diagnosed and stuff. And then one day they're just like, "Oh, she's getting a little bit sort of wandery. She's going to a new home," and all this. I don't know, so they're all trying to protect you and keep you, I don't know, happy, and make it a little bit easier on you. It was sort of nice to learn that they're all there. They're always going to make things easier for you and stuff. It was quite nice to learn that.
Mikayla: Moving in and that sort of thing, I didn't come from the best background. So just starting life again and studying a new chapter. Coming into a, I guess, family with a dementia, I built a bit more independence, I guess.
Nicola: I think when you go through something at such a young age, you're forced to grow up very quickly, quicker than you should at the age that you're at. But you don't really think about it too much, because you do absolutely everything you can for the people that you love and your family. I think once you know that you've done everything that you can, and it doesn't really matter that you're 22 years old, and you are worrying about a whole world of things that you never thought you'd have to worry about. But, at the end of the day, it doesn't matter. It's made you who you are today.
Mikayla: Building up the fact that you do have a voice and that you can make a difference to the way you live and way your loved ones live. That's a big thing, and a big thing to learn.
Anna: I feel like I'll realise a lot after mum's in a home. I feel like sort of putting off a lot of everything, emotion and all of that, because it's like you're just getting through. I don't know. I keep thinking of when it's over, but I think once she's in a home, there'll be a lot of relief for me and my dad. I know maybe then I'll maybe start realising how I've changed, or that sort of thing.
[Title card: What advice do you have for other people?]
Nicola: I think it's okay to not be okay. Experiencing something like this definitely isn't easy and has its own challenges, but you don't always have to be the tough one. It's okay to sit in your emotions, and actually think and understand what you're going through is really a quite difficult thing for someone to go through at a young age, or any age for that matter. And while the people around you may not understand exactly what you're going through, it's still important that you share your experiences with those around you, because it'll help them understand your experience a little bit more, and it'll help you get your feelings off your chest.
Sam: I think I'll really, looking back on it, cherish that time that I did get to spend with granddad. It seemed like a chore at the time, but now, I think that it was a good time that I went over and spent half an hour, 45 minutes, just kind of helping him get sorted out for the evening, and he'd just kind of ramble on, tell stories that he's told a million times before, but I'm never going to forget those stories.
Charlie: Definitely, you need to have a sense of patience, just having the same conversation, or just dealing with certain quirks that your person has.
Anna: Sometimes, you just want to run away, but it is sort of rewarding in some respects knowing that you've done everything you can.
Charlie: I wouldn't say you get used to living with the unknown, but the unknown becomes a little bit more known to you, it sort of becomes more of a common thing in everyday life, rather than just sort of this strange thing happening to someone you love.
Anna: You get used to life being crazy. You get used to the fact that they're going to be unpredictable and say inappropriate things. You get used to it. You just expect it. I think learning to laugh about it, we were all talking about that earlier, is just the best therapy. Like if they do something silly, instead of feeling embarrassed and self-conscious, go along with it. When my mum's telling a story to someone, I’ll just be like, "Yeah, yeah, I remember that, and that was great." I see how happy she is because you're joining in her, even though it's a made-up memory, it's still, to her, it feels real.
Sam: Make sure you do some of the research that you need to actually understand how to deal with some of the issues that people with dementia have. Rather than get frustrated, and yell, and repeat questions that they're struggling to answer, kind of learning how to frame things differently, learning how to respond differently to the issues that they face is pretty important. Because for people with dementia, it is all in the moment. If they're happy in that moment, then that's all that you really can do.
Mikayla: I think keeping your sense of humour. There's always a funny side to things, and, "If you didn't laugh, you'd cry," we always say in our household.
Anna: Yeah, definitely cry. If you've got someone you're close to who's happy to sit there while you let it out, definitely do. I don't know, maybe looking at us all here, and talking about it from a very philosophical point of view, but it is very hard. Very hard. And that's okay to realise that.
[Title card: Thanks to Anna, Charlie, Danielle, Mikayla, Nicola and Sam for supporting this project by sharing your stories with us.]
[Title card: Visit dementiainmyfamily.org.au]
[END of recorded material]
