In this special edition of a A Grey Matter we talk with Rachel Corbett, who shares her personal experience with dementia and its harrowing effect on her family.

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Transcript

Donna: Call me biased, but the Queensland Brain Institute is pretty unique. Our researchers study fundamental science and the healthy brain and brain disorders all under the one roof.  Understanding the potential impact of our research and hearing how people are affected by brain diseases, drives our researchers to work harder and longer than they already do.  In this special edition of A Grey Matter we'll be hearing from Rachel Corbett, who shares her personal experience with dementia. Rachel's mum was diagnosed with Alzheimer's disease in her late fifties and lived for 10 years with the condition.  Rachel is a writer, T.V. and radio presenter, podcaster and creative coach. She spent the better part of a decade hosting a breakfast radio shows across the country and regularly appears on T.V. shows including The Project, which is where I first heard her speaking about her mum's devastating disease.  

Rachel: Yeah, Mum was… gosh it’s interesting, because my relationship with my mother was very complex for a lot of years and the person that she was then...actually came out a lot more during the disease in the later years 'cause she had spent a lot of time in her life kind of putting up this veneer of, 'everything’s fine…' so, it was interesting that in some ways the disease kind of broke through that. But at her core, she was just such a positive, joy-filled, funny person. Like I think to myself, I realised the more that I work in this business - quite often than I do jokes and stuff - and when I got to know my mum much, when I got much closer to my mum in the later years, I realised; “Oh, my God! I’ve stolen her material.”

She was just so funny and loving, and kind; and one of the things about the disease that was hard as to she was so resilient. She came from very, very strong stock. Like all of my mother's side of the family they were fighters, all the women and she, the whole time even though, she was literally falling apart at the seems; and was completely out of control and had no control over her mind and what was happening she kept her chin up till the end.  You know she really tried her very best. She didn't wanna worry anybody. She didn't want to make people feel uncomfortable. She was so attuned to how people felt in a room. She was so intuitive, even in the later stages of her disease. She could tell when people were uncomfortable and you could really see that and she would sometimes, in some situations when you would say somebody was uncomfortable and I thought they were kind of trying to hide it as best as they could, but she would often go up to them and apologise, and that was in the later years when she could barely speak. She was still so keyed in to that kind of thing. So yeah, she was a pretty amazing woman.  

Donna: It must have been heartbreaking to watch her sometimes have insight into her condition as it progressed?

Rachel: Look! I think the worst thing about her situation was that she was she knew it was happening the whole way along. A lot of people say; “Oh, you know they disappear. They don't know who they are. They don’t know where they are.” And, I always said, I wished that it happened to my mum. I wished she had no idea what was happening. I wished she had just gone quietly into the night and everything was, but the whole time until the end, I could see her inside this head that wasn't working and you could see every time I looked at her, she was so terrified and it almost felt like, somebody looking at you from inside like a jail cell, this really trying to get out.  She was so present right until the end and aware of what was happening and frustrated, God! She was so frustrated because she couldn't get her words out, she couldn't do anything, she couldn't... you know, and you could tell right until the end she would constantly be like: "ughh!" You know, really getting angry at herself at certain things because she just wasn't capable. So, that was really hard to watch her knowing what was happening the whole time.

Donna: When did you first start noticing symptoms? Did she tell you about it or was it something that she tried to hide early on?

Rachel: She tried to hide it. She wouldn't tell anyone. She didn’t want anybody to know. She didn’t want anybody to worry. It's funny, she said I’m trying to think of a timeline what date it would have been. I think it would have been around about 2004, was my sister's 21st birthday and she always said, she never said it till much later, but she said that at my sister's birthday party; "I felt something in my brains snap." And, I don’t know, I've always tried to think, "My Gosh! What does that even mean?" You know, what does it even feel like? And, I kind of always thought that it was such a gradual thing but, certainly around about that time 2004 was when we started to see certain things happening. You know, she was forgetting things; she was always very articulate, but she just wasn’t talking right. There was obviously something going on, something was amiss, but she was always, "oh, nothing, everything's fine, everything's fine." And, I think even when she went to the doctor and they diagnosed her, she still kept it a secret from everybody. I think her husband knew, but from us certainly she didn't say anything and I think for quite a long time, I wanna say maybe a year or a couple of years or something, we knew something was off, but she wouldn't tell us what and I think I found out because I saw on the counter, a letter from Alzheimer's Australia, or something to do with Alzheimer’s. So, that was kind of the first time that I realised; "Oh, this is what she had." But, at that point, I had no idea what it was. Like, I never really thought much about it. I certainly had never met anybody that had anybody who had gone through Alzheimer’s. So, I didn’t really understand what it was.

Donna: Did you have any idea what Dementia involved? I guess people in the public often just say, “Oh, you know it's that disease that old people get when they forget about things."

Rachel: Mmmm... and I think that was one of the reasons why I’ve started to speak more openly about it in later years because I don’t think we have an accurate portrayal of what it is and I think having that kind of information, knowledge is power, right? So, when you're a family member about to go through something like that, you need to know what you're about to face, because I was certainly blindsided by it and at that time, I thought "Good Lord!" I mean I don’t know how, I don’t know whether it would have been more scary to know about it , but I was sort of knocked for six. But my kind of understanding of dementia - I had worked in an old people's home for my work experience in high school. There was only one woman in the ward that I was working that had dementia and I used to love going in. I liked sitting with her and she had...everyday she forgot who I was but she was very calm and quiet in her own world and in her bed and she would obviously forget things , but that was the kind of version of events that I had in my mind and I didn’t realise which obviously found out later how violent and aggressive; and sort of scary it is. I always thought "Oh gosh, mum will be peacefully sitting in bed and it will be so sad when she doesn’t know me. But by the end of it I was thinking, "My God, I wish she didn’t know who I was," because this is just breaking my heart, you know.

Donna: God, that is so sad. In terms of those later years, what did your mum do? What was her behavior like?

Rachel: You mean right at the sort of end of it?

Donna: Yeah, you mentioned you know, she was aggressive and she'd lash out to people including you?

Rachel: Yeah, it was sort of the last year that things really started to get that way. Mum had grown up. She had been in quite an abusive household when she was little and that had played on her mind, her whole life even before the disease came about it was something that she just she could never get over and when the disease hit in the later years, she started to regress a lot back to that time. It's interesting when, so it was about a year before she passed that she had to go into home and that was because my stepfather was basically being woken up in the middle of the night being belted - like she would be bashing him, screaming at him, she would be impossible to calm down, so he was basically calling the ambulance all the time because she just would never sleep. Even right until the end. I don’t think she'd put her head down for more than an hour. And people that I have spoken to - I don’t know whether this is the situation - but people that I have spoken to have said when somebody with Alzheimer's goes to sleep and might wake up after five seconds and think they're rested, you know; they don’t realise that.. they think, I’ve got to be up.

And my mum is constantly on edge there's a whole bunch of things that happened in our life that meant she was sort of really stressed and things, and in that final stage before she went into the home, I would go and stay with her. And she started doing this thing where she would like take me, she would stand at the window and sort of scream out the window or she would take my hand and she would take me into the backyard and she would like, be trying to hide me and I didn’t know really knew what was going on, And I spoke later on after she went into the home and when she was in palliative care, I was speaking to my mum's sister and, you know, there was a situation when they were kids, when my grandfather was quite violent towards my grandmother and they used to have to...he would come home in the eveningtime and they would be looking at the window for him, and sometimes they would have to go down and hide in the backyard; and so all of those things started, I started to realise, Oh my God, this is what my mum used to do with me - she used to take me down to the backyard to hide and she would be standing at the window waiting for dad to get home, and, you know, all of these stuff is a horrible, horrible time in her life that she had spent so many years trying to get away from, and was just flooding in and she just couldn’t do anything about it.

So, when she eventually went into the home, she was terrified. She was really scared and she never wanted to go into a home, but it just got to a stage where it was physically and medically impossible to keep her home without somebody around that had some kind of ability to sedate her because she was waking up so violently and then, in that last year,  not sure whether it was the... I’m sure it was a combination of the disease but also her being somewhere she didn't necessarily want to be, fear, and all of that kind of stuff because I did feel like there was a lot of her still within her right till the end. But she just became so violent. She would be screaming and I’m not sure whether it was because she could see that early sort of abuse happening in her mind sometimes that's what it felt like, because she would almost puffherself out sometimes, and after she kind of had a huge fit she would almost look at you like what just happened? Well, you know where am I? And, it got to the stage where she really needed somebody around her 24 hours a day. At the home where she was, they just could not cope. She was the only person in there like that... and, you know, by the end like it gets to the point where this person that you love is there you can’t physically be there 24 hours a day. You put your trust in people who would definitely trying their best, but I used to come over and mum was covered in bruises. I had one woman come in, one of the nurses come in and sort of say that they’d come into her room and the window was smashed and they didn’t know what had happened. She just, yeah, she was just so violent and would spend so much time pacing the room, screaming, muttering to herself, yelling - like just really scary, scary stuff to see - you know, when that’s not the person that you know.

Donna: It was quite a long time that she had Alzheimer’s, I think I read an article that you wrote she was diagnose in her early 50’s and then it lasted like a decade or something?

Rachel: Yeah, 10 years it was funny… people said to me that usually people with Alzheimer’s is about a decade between when they get diagnosed or when they pass away and they told me that, sort of eight years in, I guess and I always said to myself; “ Gosh! Mum seems so strong.” Like, I know she’s mentally not capable or things are quite difficult for her mentally. But physically I thought, I can’t work on how she's going to die. Like I don’t know how this is going to happen because you sort of think of people who are going to pass away like there's physical deterioration and weakness and, you know, something that you can see what this person looks like, and gosh it just seemed so far away even at that stage. But that last year, and the six months before she went into her home, like I’ve never seen anybody go down quicker. She just… she went down and completely changed. And in that last year became very apparent, oh my gosh, like something's going to happen here. So, it was about 10 years between or maybe a little bit further from when was diagnosed is when we started to see things happening and when she passed away.

Donna: Did you ever talk to you mum about her illness?

Rachel: That was the hardest thing for me with mum in the early days when she was still communicating okay. I took a lot of video of my mum over the years, a lot of it. I don’t know how long it will take me to watch it, but I feel like there’s something important that I’m going to do with that footage. I’m not just sure what. But I interviewed her, it must’ve been about 2009 I think or 2010, because I wanted to sit down and talk to her about her disease. She was still able to sort of articulate things at that point and, Oh man! Sorry.

Rachel: She was talking about how, you know, people would laugh at her all the time. She'd go and do things at the shops, or go to a cafe, and obviously the behavior that presents when you’re not, for one of a better term, 'normal' or behaving in a normal way. People would think she was nuts or that, you know, just really negative things. And I know she was trying so hard to continue living a normal life and to keep, just because bascially, she ended up essentially stuck in the house you know, because she couldn’t drive. She got lost a lot when she went walking, and so you end up getting to the stage where your pretty much trapped because you’re terrified to go out anywhere because a couple of times she had to call... somebody ended up calling the police because she got completely lost, she didn’t know where she was. So, she would say that she would go and do things, go to a café, go to the shops or something, and she could see people snickering or laughing at her or making comments about her because she wasn’t behaving normally or she was doing things that she couldn’t control.  And, gosh, that used to kill me to hear that because you just think,  there’s nothing they can do about it. There’s nothing she could do. She was trying her hardest to behave in a way that she felt was normal, so that she could kind of slip under the radar and still appear normal to people; and people just weren’t aware of what was going on and I think it subsequent years... it’s funny ,obviously, when you’ve gone through that you see what it looks like, you can sometimes see it in other people. I've often seen people out and about and I thought, 'I think they might be, I think they might have this'. So, I’ve seen people who’ve are obviously caring to somebody who like I think they might have this and I’ve always tried very hard to be really sort of you know all over the top; “Hey! How’s it going?” You know, just trying to make something as easy as I can for people because I’m aware of how you feel in that situation. And as a carer as well, taking my mum out - I was trying to take my mum out do things, go have a cup of coffee, go for a walk go and do stuff so she didn’t feel like she was stuck in a house so she’s and she didn’t feel like I was ashamed of her - that was really important for me, for her to feel like, hey I feel really proud to be around you when we were out and about, as I knew she was really conscious of that. And in certain circumstances a café, some things, you know, people would be really accommodating, and nice, and understanding and open; it just lifts the pressure off, you as a carer 'cause you always go into every situation thinking how this people gonna deal with this. I’m fine! It’s my mum, I love her, like whatever she does its fine but how are these people in this environment going to deal with it? So, it’s really hard for the person to fit in to normal life and then when you put on top of that they feel self-conscious and embarrassed and all of those kinds of things. That’s no way for somebody to live. That’s no way for somebody to go through life feeling that way. You want everybody to feel...especially when it’s not their fault ... the way that they are is completely okay. So, that was one of the hardest things for me to hear mum talk about was the fact that she sort of knew she was different and that people found that difficult to deal with.

Donna: It’s so debilitating, but also so common. I think the latest stats are about 400,000 Australians currently live with dementia at the moment, but why do you think you know public awareness doesn’t compare really to other conditions why do you think people don’t talk about it enough?

Rachel: I wonder whether at the end, when I saw mum the way that I saw her I thought: “Gosh! This isn’t a nice thing to talk about,” I think there’s a kind of resilience that you have when you’re going through something like this were becomes such a part of your life that you’re dealing with it. You just need to get on with business and you’re also like I’m very conscious of the fact that yes, I have close personal friends that I will talk to about things, but I don’t… you don’t need to dump stuff unto them all the time; and a lot of these stuff is really heavy that you see. So, maybe people just kind of try to go on with business without burdening people because it’s a pretty icky thing to talk about, I know that somebody was telling me about the film that they brought out recently...

Donna: Still Alice?

Rachel: ...Still Alice, yeah I didn’t go and see it because I just thought I cannot deal with seeing anything that portrays this kind of disease, but some people that saw it actually said, they portrayed this in this really nice way it was kind of sweet I’m not sure if that’s the case, but I don’t know where the we just were a bit too careful about making sure that everybody feels okay about it or that it doesn’t seem terrifying. And while I understand that we absolutely have to give hope...there’s no point in making people feel like there’s despair and I know that the research that’s beingn done is amazing and there is hopefully hope. But at the same time nobody is going to feel compelled to donate to research or to do anything if they’re not really scared about it; and I think we need to be more open about the conversation that we have because it’s really flipping terrifying and it is awful to for somebody to go through it and it is a huge burden emotionally on a family and on that the person that’s going through it. And, so I don’t know, sometimes, maybe these things kind of have… they come in to sort of popular favour, you know. I don’t know whether Alzheimer’s is going to have its time where we start to open the conversation and talk about it more and what the catalyst for that might be because you’re right, it amazes me that as many people are affected by it and will be affected by it like the numbers are scary and yet we just don’t really talk about it.

Donna: I think it the conversation begins with people like you, people who are in the public eye, sharing your stories.

Rachel: Yeah, and I think that night on ‘The Project’ then, I got a lot of responses from people who said: “Oh my goodness! This is what exactly what I went through.” You know I’m sick of this kind of positive message nobody ever talks about what it’s really like and that kind of stuff. And, what I saw was scary. It was terrifying, it was violent, it was emotionally draining. It was exhausting from a caring perspective because you never... there's no sitting down on a couch watching TV with my mum. You had to watch her. It was like having a child that was in a room full of boiling hot pots and fiery pokers and you just had to keep them out of the way of all of these bits of danger. You just could not walk away for a second. You couldn’t, if we had to go anywhere, you know, if we went anywhere. Mum and me had to go into the bathroom together because I couldn't say 'just wait outside this cubicle or just sit at the table', because mum wouldn’t sit at the table; she’d walk off and walk on to the road. So, yeah, it’s pretty terrifying and I think the only way that the people are going to start to invest or to be invested in it emotionally is if we do start having these kind of a icky, uncomfortable conversations that aren't very pretty but truthful and honest and our reflection of what happens when somebody is affected by it.

Donna: That was Rachel Corbett sharing her personal experience with dementia, if you'd like to find out more about Rachel her website is rachelcorbett.com.au. Scientists in our Clem Jones Centre for Ageing Dementia Research are working towareds treatments for dementia, including a recent discovery that non-invasice ultrasound could be used to reverse the symptoms of Alzheimer's. If you want to know more about the dementia research her at the Queensland Brain Institute, visit qbi.uq.edu.au.

I’m Donna Lu. Our podcast is produced by Jessica McGaw. If you enjoyed this episode, let us know on twitter or Facebook. Tell your friends or you can give us a review on iTunes. Thanks for listening.

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