Keep Able Reablement Podcasts
Keep Able is your go to authority on Wellness and Reablement. Our various podcasts cover discussions on real world issues and examples from people in the at home aged care support sector, specifically for CHSP providers.
Keep Able Reablement Podcasts
The benefits of reablement for people living with dementia - Nell Hawe P2
Client living with dementia – In this second episode examples of reablement experienced and the importance of empowerment.
Discover more reablement resources at keepable.com.au
Hello and welcome to this episode of the Reablement Podcast, where Keep Abel are talking to a range of people who have experience with reablement and we discuss how it all comes together and why it works. I'm Alison Bella from Keepable. In this episode, I'm continuing my discussion with the fabulous Nell Haw from Port Macquarie. Nell has been living with younger onset Alzheimer's since 2020 and has worked in the care industry and now receives care at home that we're going to continue to talk about. So, Nell, tell me how you feel about the concept of reablement in your care and what is important to you.
SPEAKER_01:It is so vital to keep moving and to be active and to be healthy and but the same as keeping our social networks alive. We don't become hermits, you know, because then we're looking at depression. You know, then we're going down that path. We want to keep our mind and and body healthy. So reablement is is so vitally important for everybody. And and whatever that looks like for each and every one of us, we've got therapists, we've got counsellors, we have so many people that can help us, you know, groups and all of those sorts of things that can help us to maintain that.
SPEAKER_00:Have you got any examples of typical daily tasks where a support worker has given you the ability to thrive? They've empowered you to do something for yourself or do it in a slightly different way.
SPEAKER_01:Yeah, I guess for me, um, for instance, in the kitchen, we purchased a cutting board that is a multi-purpose cutting board. It has spikes on it. Um, because I've lost a lot of strength in my hands, the prong on it, you can put the potato on it, on the prongs, and it holds the potato for me. And then with a really sharp knife, I can slice a potato. Then it has another part where you can put a slice of bread and it holds the bread, and then like I can butter the bread, and it's a great device, and it it just allows me to do stuff in the kitchen without one cutting myself, but still allows me to help prep food in the kitchen, and then like my wheelchair, I've got an electric wheelchair, um, and so we go out in the community in that, but we got an uh attendant control on it, so that when I get tired and my brain gets tired and I can't steer it anymore, um, I have an attendant control on the back of it so that my support workers can then take over. It allows me to be independent because at home I walk around the house, but out in the community I I fatigue, and then when I my brain gets too tired, it gets confused and I can't control the chair. So I have the attendant control for the support workers.
SPEAKER_00:Great. And I know we've spoken before. Um, you mentioned in one conversation we've had that, for example, if a support worker turns up and notices your mobile phone is nearly out of charge, you get quite cross if they just go and plug it in. What should they be doing? They should ask me and allow you to do it for yourself. Absolutely.
SPEAKER_01:No, your phone needs charging, your iPad needs charging. So we have a whiteboard now, and it has a list of tasks on it. And on that list of tasks are for the support workers, it has is Nell's phone charged, watch charged, iPad charged. So they then come to me and say, Nell, how's your phone? How's your iPad and your and your Apple Watch? So then I can check them, and then if they need charging, we put them on charge. So they ask me the question, and then we go from there.
SPEAKER_00:It's as simple as that, isn't it? It's still your responsibility that they're doing the right thing by supporting you with that. Correct.
SPEAKER_01:Because I forget. And just before I came on the podcast, I looked at my Apple Watch with the support worker, and it was 17%. And it was like, oh, I need to charge my Apple Watch.
SPEAKER_00:Tick for the day. What is the best way for a support worker to communicate with you? We've talked about asking you questions, but is there certain language or other things that are really helpful to you? Clear, simple language.
SPEAKER_01:And I think not talking too fast. Because if you talk too fast, I simply don't get it. Because words just run into each other. If you're giving instructions, you really need to give them to me now, one at a time. Sometimes I can manage two at a time, but I certainly can't manage three at a time anymore. Following a conversation is really quite hard. And following conversations in a group of people, totally gone. Totally gone. If I was having those conversations in a room of other people, that would be a disaster. A support workers taking me to like a shopping mall would be really difficult for me. The loud noises are very difficult for me, and the busyness of of the place.
SPEAKER_00:Nell, what does dementia-friendly mean to you? That term gets thrown around a lot, doesn't it?
SPEAKER_01:Dementia-friendly. That means for me, if you're dementia friendly, you've got an understanding of dementia.
SPEAKER_00:As simple as that. I thought you'd have a response like that because I know a lot of organizations and people classify themselves as dementia-friendly, but do they understand what it means?
SPEAKER_01:Yeah. Yep. And it also means that you're kind. And I can tell you that some dementia-friendly organizations are none of that. That is really sad. Really, really sad. They claim to be dementia-friendly, but at the end of the day, they are not. You know, if you are dementia-friendly, you really have to understand dementia and you want to be in it because you are passionate about dementia.
SPEAKER_00:Thanks for that. Really good points there. Do the support workers who work with you also know how to support the other people in your life? Yeah.
SPEAKER_01:So my support workers are pretty much a part of my family. They've been around for a long time. They've been around, one's been around for four years, one's been around for two years, and one has been around for a year. And I guess, you know, they're they're here for six to eight hours a day. And they're really heavily involved in my care. You know, they're they're here for showering and they're here for lunch and take me to appointments, and they're here for the highs, they're here for the lows, they're here for the good times, the bad times, they're here for birthdays, they're here for funerals, and they've just kind of become part of part of your life and part of your family. So, you know, my daughter lives in New Zealand. So when I FaceTime, her and my grandson, you know, they're there and uh they've they've seen my grandson grow from a little tiny baby to a two-year-old now. You just form a bond with with your long-term support workers. And I guess that's where the relationship forms. They come to know you, they come to know your likes and your dislikes. And and I think that's the consistency of care that's really important of getting the right match of support worker and the consistency of having the same support worker. I don't believe in having the same worker every day. I have a variety of workers, but I think it's important the longevity of your support workers is really, really important. They're sharing my journey, and in doing that, they have come to know me as a person and have come to know so much about me and my family, and and so support not just me, but my family, and and even in my work life, we not only supported our clients, but we supported the families as well. And that was how we that was how we worked, because families were such a huge part of of our clients.
SPEAKER_00:And that's so important, as you said, they're coming into your home and your environment, so it's your world. They need to have that relationship as well.
SPEAKER_01:Absolutely, because everything affects everybody. The dynamics of it all is so important. It's not just the one person, you know. They may be central to it all, but they're not just the one person. It's we're all in it together kind of thing.
SPEAKER_00:Do you find people can learn what they need to then make them a wonderful care worker for you? You mentioned the University of Tasmania MOOCs, but do you think there's other resources out there that are helpful? Absolutely.
SPEAKER_01:Absolutely. Dementia Australia have some amazing resources. Forward with Dementia is a great website as well. There are some amazing, amazing resources out there. But I don't believe that resources is just the only way to learn about dementia. On-the-job experience with a variety of clients is where you are really going to pick up your experience. You know, all the training and do all the training in the world. But getting on the ground and working with dementia clients is where you are really going to get your experience. I've worked with so many different dementia clients in my work life, and that's where I put everything that I trained and learnt into practice and learnt from all my clients that made me the most fantastic, well-rounded worker that I believe that I was, because I just had so much experience with so many people with a disability in my work life. You know, I believe I was a great worker because I had such wonderful experiences with so many different disabilities, from, you know, mild cognitive impairment to Alzheimer's to Angelman syndrome to younger onset dementia to childhood dementia, to San Filipo, which is younger onset. I mean childhood dementia, Down syndrome, you know, autism. There was just so many. And I was passionate about disabilities and I, you know, I just thrived. It it was my world, and I just loved it. So a great disability support worker is someone who is on the ground, getting their hands dirty, getting experience and getting training at the same time. And you need to continue your training.
SPEAKER_00:You can never stop training. So many topics that the training is available in, even understanding brain changes and then how to respond and support in different situations. It's so fantastic.
SPEAKER_01:Yeah. Yeah. You've got Parkinson's disease, you've got MS, you've got, you know, there is just so many. You know, the brain is responsible for so many. You know, it's incredible.
SPEAKER_00:You've beaten me to the punch on one of my other questions, which was going to be there's so many supports out there now, such as Dementia Australia, Dementia Support Australia. Have you used or are you aware of some of the tools that Dementia Australia have created over the years, like the app or the artificial intelligence character?
SPEAKER_01:Yes, there's Eddie and there's uh Talking with Annie.
SPEAKER_00:Yes.
SPEAKER_01:Uh and their VR is very good as well. Yes, I've used all of those. As a um member of the Dementia Australia Advisory Committee at one of our meetings, we actually had all of the technology devices from Dementia Australia, and they were fantastic. I did talking with Eddie, and he didn't want to have a shower, so I had to get Eddie to have a shower. So it was he was fantastic.
SPEAKER_00:It was really, really good. It's great technology, isn't it? I think I tested one of the first versions of that. Um, I think it was talking with Ted back then. They may have changed the scenario, and I was getting upset with myself that I was upsetting him. It was so realistic.
SPEAKER_01:Oh no. He doesn't want to have a shower.
SPEAKER_00:But it's great strategies that they've got. It teaches you the different ways to adapt in those situations and still be supportive.
SPEAKER_01:Yes.
SPEAKER_00:Yeah, no. Talking with Ted, that's it. Is there anything you would like to say about the stigma of dementia?
SPEAKER_01:There is a big one for people with younger onset dementia, especially. So one of the big ones that I had was that I was in a shop with one of my support workers. I was having trouble getting my words out. And the girl at the cash register was getting impatient with me. And I said, uh I said, I'm sorry. I said, um, I've I've got um dementia. I said, and I'm just having a bit of trouble. She said, so have I. And because I'm used to people saying that to me, I said, no, no, I really do have dementia. And she like looked at me like I was joking again. And my support worker was with me, and she said, no, no, she really does have dementia. And then she just like looked and continued doing what she was doing, like almost embarrassed. But I have numerous stories like that where uh people think you're joking. So I ended up getting a badge that says, please be patient. I have dementia. And when I go shopping, I just wear it. So that people really realize that, yeah, I have um that I really do have dementia. Because I guess at 50 people think, you know, I look like I had dementia.
SPEAKER_00:And again, it comes down to the knowledge, and we've been talking about the importance of support workers, etc., doing some learning and getting an understanding of dementia, but it needs to be more widespread than that, doesn't it? Absolutely.
SPEAKER_01:Absolutely. And you know, you don't look like you've got dementia.
SPEAKER_00:What does it look like?
SPEAKER_01:Well, I don't know. Should I have 10 heads or should I be drooling? You know, like what what should I look like? What does someone with dementia look like? People think people with dementia, it's a memory thing. You know, it's all about memory. Um, which we know dementia isn't about just about memory. It's just about educating people. But you're still quite capable of doing so many things. You know, you you're not incapacitated straight away. And, you know, people, different people decline at different rates and different types of dementia are are very different, you know. Some people retain their memory. I'm losing my memory quite quickly with Alzheimer's. But, you know, you asked me anything to do with my work life, and it's still all retained in there. But ask me what I did yesterday, and I couldn't tell you.
SPEAKER_00:Have you got any other examples of where people in your life or support workers have empowered you with something?
SPEAKER_01:So I have difficulty getting dressed. My support workers will assist me, so they'll hold my clothes out in front, and then I can put my arms in to my shirts and for my pants. Because I have trouble bending, they will just uh put my legs in and then I'll just pull up my trousers. So I can still do it, but I just need assistance. So little things like that, I've had to accept help, which I've found really difficult because, of course, I'm a very independent person. It it's been hard. Same as I now require a standby assist in the bathroom for showering, um, because I do need some support to have a shower. But I can still shower, have a shower independently. And you know, that's that's really important for me to still be able to have a shower independently. Admittedly, I have to have a shower chair, but at least I can still independently shower. And I guess those small changes I've had to come, I've come to accept, but it still allows for my independence. You know, you just can't be pig headed, can you? You know, you have to accept some small changes. As you decline, you've just got to accept it. And I think it's about acceptance of change. Going, well, hey, I can still be independent if I accept that change.
SPEAKER_00:And by continuing to try and do as much as you can for yourself, it's keeping some of those capabilities. Yes. Yeah. Have you had to have a lot of adaptation to your environment?
SPEAKER_01:I'm about to get a new bathroom to allow for support workers to be able to assist me in the shower because my bathroom's a little small. I can see in the near future that that will be necessary. So that will be something that's about to happen. But my house is quite open plan. And so far it's it is going really, really well. Um, when I had my knee replacement just recently, I had to use a SaraSteady. Fitted fine. So we didn't have any issues. So the girls are really great in empowering me to do things. So when I've got to do my exercises, I have balance exercises. The girls are great in empowering me to do the exercises and encourage me to, you know, get up and do them and three to go, two to go, one to go. So they're really good. I have a back brace that I wear uh for my shoulder. They're really great to remind me to just ensure that I'm empowered to to be who I want to be and to continue to be as independent as I as I can and as and as much as I want to be. You know, on a bad day, obviously, that differs, and they judge that. Do you use any assistive devices in the bathroom or the bedroom? I use assistive devices all through the house. I have a tab timer for my medication, nine in the morning and nine at night. The tab timer beeps and my and turns because it locks your medication away and it beeps for up to half an hour until you tip out the medication. Amazing device, highly recommended. So I have that. So if the girls aren't here, I can do that because it uh alerts me. I have a Eufie video doorbell uh with camera so I can see who's at the front door. Also, I have a Eufie smart door lock, so it's a fingerprint uh device, so the girls come and go using a fingerprint. It also has a keypad, so they can come and go via that. We have Google Home, so all the lights come on and off at set times within the house, so I don't have to worry about turning lights on and off. I have a memorable and that reminds me to drink water, take medication. It's an amazing uh piece of equipment. It also orients me to the day, the time, whether it's morning, afternoon, evening. Lots of great gadgets. Oh, lots. We have lots in the in the house, and of course, I have my Apple Watch, which has false detection. Yeah, I have oh, and then I have my uh motion sensor night lights that come on because of course with dementia you get up at all hours of the night because I could be awake for 24 to 48 hours. So, yeah, it's nice to have those on. So we have lots here, and I find them yeah, extremely helpful.
SPEAKER_00:What a brilliant conversation, and thank you so much, Neil, for being here and sharing all of that with us. For our listeners, please visit our website at keepable.com.au to access all of our free resources and information on reablement.
