From carer to mentor
The importance of sharing your knowledge
Transcript
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About the episode
Being a carer means learning on the job, at rapid speed, under immense pressure. But what do you do with the knowledge that you’ve gained after the person you’ve cared for has passed away? Here’s how to share your wisdom with the carers who come next.
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Miriam: Very hard times, and if anyone else wants to tell you any differently, they're not telling the truth at all. It's just like, "Oh my goodness, can I possibly do this for another minute?" I think it was a bit more significant to me is because I was caring for my mother who meant a lot to me in my life. My name's Miriam Cleary, and I'm an Aboriginal woman from Northern Territory. My mother's side is Gurindji, from Wave Hill, and my father's is Eastern Arrernte, from Alice Springs. I live up in Darwin with my husband and our family; our children and we have grandchildren.
Hamish: And is that a picture of your mum?
Miriam: Yes. Yes.
Hamish: And so, you are here to tell us about her journey with dementia to some degree and your experience caring for her.
Miriam: Mm.
Hamish: Why is that important for you to do?
Miriam: Well, going through... umm that caring for my mum and knowing how, not difficult, but extremely hard, I was to be able to do that and I actually made it through. That I'd like to be able to put that message out to others and I really firmly believe that information, education awareness is the key to helping others, in the community, individuals and families alike. Mm.
Hamish: Was it daunting for you as a family to go through a dementia experience?
Miriam: Absolutely, and if anyone else wants to tell you any differently, they're not telling the truth at all. Very hard times, very precious times, and moments that if you have a chance to just stop and realise that they are the most precious moments, some of those moments are just awesome. Other times it's just like, "Oh my goodness, can I possibly do this for another minute or another second of the day?" And I certainly learned a lot from being a carer and I think because of, I think it was a bit more significant to me because I was caring a lot for my mother, who meant a lot to me in my life, yeah.
Hamish: Tell us a bit about your mum. Let's get to know her a bit. Tell us what she was like?
Miriam: Mum knew how to show love. It was important to her to, for us to know what respect was, what discipline was; morals and ethics and believe in ourselves and family was just everything to mum, absolutely everything. She gave up a lot for us and, but she didn't, it never seemed that way that she did. She was always happy, and always very positive even when things were amazingly challenging, she would still have a smile on her face and go, "Come on, let's get together and have a barbecue” or what have you, and that's what held our family together, it was great, yeah. And growing up as children, it was just wonderful. Mum was one who taught me a lot about native plants and animals, and so too did my dad but mum was there to encourage many of those steps forward in knowing our environment and being comfortable in it. And yeah, I was grateful that she had done that or was able to for herself. You know, education was important, and particularly with our background being Aboriginal people. Stats, statistics show that Aboriginal people a have less opportunity for education, housing, all those sorts of things, I could, the list goes on.
Jim: Yeah.
Miriam: So, Mum did all that she could to provide all those things for us and encouraged us.
Hamish: A lot of people who were part of the stolen generations had lifelong difficulty with authorities and institutions and even professions. What was your mum's relationship like with doctors and the health system? Because obviously, with a dementia diagnosis, she would've had to interact a huge amount with that. What was the dynamic?
Miriam: There was one incident where she came out home. We were out at, we lived out at Darwin River, which is a rural area of Darwin and it's about 50 minutes from the Darwin City. Anyhow, where’re out there, and mum came to visit us one day with my niece, and we had a wonderful day. And then she got in the car and she says to me, "Hey, Mim, when I get to the main highway, which way do I turn?" I went, "Oh, okay”, and I explained it to her. The very next day, I went around to, I took the day off from work; I worked from, with stolen generations at the time. I went around to see mum and I said, "Hey mum, are you due for your general checkup soon with the doctor?" And she said, "Ah, yes, I think I am." I said, "Hey, how about I give your doctor a call and we can go around and get that done" and she said, "Yeah, all right, that's no worries." And so, what I did, I said, "Do you mind if I ring up and book that appointment?" and she said, "Yeah, of course." So, when I rang, mum already had a very good relationship with her doctor, her GP, and it was a lady, and she was around mum's age, so I think that made a significant difference for mum, for being able to, you know, talk to her about things; and they had a good rapport with each other. I know now, it, I was pretty blessed with that situation, getting mum to the doctor and for them to do those, just those cognitive tests. But once that happened, they referred mum over to the specialist, over to the memory service, then that became a challenge. Everywhere else was a challenge because they were new people, she didn't know them. Even though it was in the earlier stages of dementia, she still didn't trust, there was no trust there for hospital staff, for any, anyone working in that, in that area. So, she insisted that I be with her and or my brother or my sister or my husband. She just said, "Mim, you have to be there for me” and that went all the way until her very last breath. I had to be there for her which was very challenging for me, confronting but I was, it was obvious that I was the one that had to do that, left to do that and just looking back now, I wouldn't have it any other way.
Hamish: So how did the wider family respond to your mum living with dementia? What was the dynamic?
Miriam: Ugh…it was...
Hamish: You're shaking your head at me, like “why are we going here?”
Hamish: Oh, it's a very trying time, extremely and because people react differently to different situations. Some are fearful, some want to know more and do research; others just don't want to have anything to do with it. And I think it's important to note that sometimes you can struggle with that if you are the primary carer and until you take a moment to understand that people do react differently, and they have different capabilities in situations like that and they have different skills and their emotions are different too.
Hamish: Can be quite hard to accept that.
Miriam: Absolutely. It took me a long time, but until I did, I was fine. It's like, and I shouldn't say this, but it's like if you witness, you're a first respondent, and you've seen a car accident; not everyone, there's five people in the car, not everyone's going to run to the scene to help. Some people may freeze; some people might get on the phone and call emergency services.
Jim: Everyone's different.
Miriam: Yes, everyone's different and I felt if I had that approach to things, then I know that one of the family members might be really good at doing the budgeting side for mum. Another person might be good at, you know, enjoying walks with mum, someone might be interested in helping out with the medications, all those sorts of things. We all have a role to play. So that goes back to, yes, I'm the formal carer but it takes more than just me to look after our loved one and our mum.
Hamish: How did the kids cope, because there's grandkids as well in the scene?
Miriam: My children lived at home, the last three, and it was really difficult for them. At first, "Oh, great, Nana's coming to live with us," you know, and because they, mum interacted with them in a different way in the early stages and prior to having her dementia diagnosis. As mum's dementia progressed, it became harder for everyone. Mum became a bit aggressive. Well, she did, she was aggressive and incidents happened along the way but then there were some really wonderful moments that mum would be calm and very gentle to the children and understand and understanding to that extent.
Hamish: Tell, can you tell me about what happened in the pool?
Miriam: Yeah. From the front of the house is a veranda that opens out and then into the pool and the children were playing and Nana decided that it was time for them to get out. And they decided, “No, it's not time Nana, Nana we're not ready to get out”. And yeah, my mum decided to get a few heavy objects and throw it at the children, and they were fearful of that, so.
Jim: Sounds like a very good tactic.
Hamish: What were they, what were they saying?
Miriam: Oh, they were just saying, "Hey Nana, what're you doing? It's okay, it's okay" and they were trying to calm her down. It didn't work, and then eventually myself and my husband came out and calmed mum down, distracted her, distraction was a very good thing.
Jim: Yeah.
Miriam: You use that a lot as a tool and so mum and I went inside the house but that night the children reacted. They locked their doors, because they were concerned that Nan would come in and knowing that mum was just the most beautiful, amazing person, but her personality was changing and changing dramatically. And so, we had to, and I sat with my husband and I said, "Look, what are we going to do here?" And there were other incidents, of course, too, and many, many more but what I said, "What are we going to do here?" So, we decided to ring Dementia Australia actually, and they were very supportive and had some hints and tips and all those sorts of things that helped us along the way.
Hamish: They, they had a PDF on grandmother's throwing things into the pool?
Miriam: No, her calming situation, I think.
Jim: They usually got a PDF on everything. We must tell them.
Miriam: Oh yes, that was an incident, absolutely, but no, they were very supportive. But what helped us with mum staying an additional eight months, is we, there's a wonderful trainer at Dementia Australia and he was able to have just a very short time with the children, a few hours and we had 'EDIE', which is our training tool and it simulates what it's like to have a person having dementia, and...
Jim: How old were the children at this, this age?
Miriam: I'd say the youngest would've been about four or five.
Jim: Wow. That would've been fascinating for them to see.
Miriam: Yes, yes, and it was great that that information came to them when, when it was needed.
Jim: Yeah.
Miriam: And anyhow, they, it helped them, you know, we got home and mum was, like I said, being, she was able to stay for about another eight months before she went into residential care. And of course this was always, I would always have that support from Dementia Australia, but I also had that support from the memory service and that helped, from my family and from the community. So, but navigating that system is ridiculous.
Jim: Very hard.
Hamish: There was a transition to residential care for your mum. What was that like?
Miriam: I said we're going to visit someone, and go and ask someone about, you know, if there's a room there that, because it was respite, and would you like to have just a small holiday and I'll come and visit you. And she said, "Oh, I don't really want a holiday, I want to stay with you." And I said, "Well, you know, you might enjoy it, let's just go and have a look”. So we went through the front door, and as we're coming up the hall, she starts thinking, "Oh, I'm not going in this place" because it was very clinical, you know, it just doesn't look like a…
Jim: Your home.
Miriam: A home, yes, and in any case, we got up there and it was difficult for me, because remembering now, I was, you know, trying to hold back the tears and all that sort of stuff because, it's, um…yeah.
Jim: It must have been so traumatic for you. You know, when you've got to go to that step of, of actually placing somebody into that care, it's, it must be so hard.
Miriam: Yes, it was. Especially when, you know, you go through that guilt and you get riddled with it.
Jim: Yeah.
Miriam: And I didn't say that I've heard it said before, but by family members that, "No, we have to look after mum, she has to stay at home, there's no way she's going into a home." But you sometimes, you realise that you're unable to do that and so it came a time where I realised I couldn't do that and neither can my family, could my family. So, when, took mum there and that was the turning point. When I left, I was bawling my eyes out and I felt like the worst daughter in the world. My husband was wonderful and amazing; he would often provide counselling for me. I know that wasn't really the right thing to do, but that's how it was at the time and I would visit, I would visit quite a lot and that meant breakfast, that meant lunch and dinner.
Jim: That was a lot.
Miriam: And sometimes sleeping. A lot of things happened within the residential setting. Mum often said, you know, "There's too many men in this area. I only want to be with the women, and I only want women to touch me. I don't want the men to touch me" and culturally it's not appropriate. And, but even though we, you know, you complete the personal care form and things like that, I don't think people really read those things, the carers, the residential carers and I would like to see them really look at the care plan and know the person well, well enough to know that they don't like Vegemite on their toast; they prefer jam. You know, those simple things that make life so beautiful.
Jim: Absolutely.
Miriam: And easier, yeah.
Hamish: What's the cultural view of putting a parent into aged care within indigenous culture?
Miriam: Well, I know within my family structure, you don't do it and usually it's the oldest child, the sibling, older sibling, that is responsible for these things to happen. Mum being a female, of course, there had to be one of the sisters or the daughters to look after her. And so originally it started off with my younger sister looking after mum and then it went onto me and so it had to be one of us girls to look after mum. My brother, our brother could not look after mum the way that we are expected to. I know it's different for different families, but this was for our, how we, were structured and taught.
Hamish: When you say, "You don't do it," what's the perception then, social, socially and culturally if you do if you are in a situation where you do need to take that step?
Miriam: You're criticized and the criticism comes mostly from your family and it's soul destroying and damaging and it was very hard for me to cope on a daily basis with that extra criticism and judgment. It was, it was extremely soul destroying and I, like I said, I can't believe I'm here today to tell the story. I'm glad I am.
Jim: We are glad you are too.
Miriam: Yes.
Hamish: Do you believe in hindsight that it was the right thing?
Miriam: Absolutely.
Hamish: Yeah
Miriam: Absolutely, because it was time. There's ages and stages, and mum was at that stage where she needed that type of help and support, which I could not give her. I couldn't give her that.
Jim: It's in her interest, right?
Miriam: Yes, yes.
Jim: I know she didn't like hospitals at all. She had a fall in the care home and hurt her hip.
Miriam: Yes.
Jim: Tell us a bit about that. What happened?
Miriam: Mum was taken to the hospital and I think... they actually got me on the phone. When they were talking to me, they said, I said, "Can you please put my mum on? I want to talk to my mum" and they said, "Yes, okay" and I said, "Mum, how are you feeling?" She goes, "I'm in pain, it hurts, it hurts" I said, “Okay” and she goes, "Come here, come here" and I said, "I can't, I have to see you at the hospital." "No, I don't want these people touching me" and I said "I will meet you at the hospital. I promise mum, I'll be there." And she's, and then they took the phone off her because she was in a, you know, she was in a state where she couldn't calm down. She was frightened, she was angry and she was... she was quite violent, but when I got there, knowing who I was, she did know who I was, she...
Jim: Was able to calm down.
Miriam: Started calming down, yeah. In any case, we got her up to the room, and she was settled in. That night, I don't know whether it was a temperature change or drop or what it was, but mum woke up, and she was awake, but she was saying, "run, run, run, hide, hide, don't let them catch you." You know. But she was screaming this out and I'm, and I was listening to her and I was thinking, “Oh, I wonder why she's going through that. I wonder why she's saying those things”. And she kept repeating that and then she grabbed me and then she was holding me really, really tight, like my pressing into my arm and trying to pull me down to hide. And it took a little while, like a couple of seconds to think, hang on, I've heard this story before and it, they say that people that are living with dementia do go back to their past memories and they, that moment and mum was living it, and it was so vivid.
Jim: Oh God, yeah.
Miriam: It was like I was with her and experiencing that, on, in that particular time and it just blew my mind. I thought, “Oh my goodness, this is what's happening.” Mum's reliving when she was stolen, when she was four years old and it was a very significant event for mum and for myself.
Jim: That would've been so hard for you to watch.
Miriam: Yes, it was and I think being in a hospital setting too, because it's an institution itself, it, I don't know what triggered mum. I dunno, like I said, it might be the temperature, dropping temperature; it might've been that she woke up and she thought, "Oh, where am I?" sort of thing, very clinical situation, atmosphere, all that sort of stuff. "Oh, hang on, I'm lonely, where, where's my family?" And we knew all the stories so that's how I could identify, hey, this is what's happening, this is the story.
Hamish: You obviously learned a huge amount through this period with your mum, and as you mentioned, there's lots of different cultural perceptions, viewpoints, and even obligations for family. Have you found yourself now being able to kind of share that knowledge and understanding? They sound like tricky conversations to be having, so are you doing that?
Miriam: Yes, to the best of my ability. Some days it depends on who I'm speaking with and if I've met them before, if they're complete strangers, it's hard to have that rapport with people. In a large setting, it's difficult, in a one-on-one or a tight family group it's a lot easier, but I'm trying. I feel that if I share my story, people are more willing and more relaxed to share theirs. I think embarrassment, yeah, is one of the main reasons why people don't want to share their story.
Hamish: What’s the embarrassment? That someone has got Dementia or the way it's responded to by the family?
Jim: It's so stigmatised, isn't it?
Miriam: Yes, it is, yeah. And particularly when you come from a background where you don't normally talk about it. I understood, I completely understood why some people take a step back because they can't deal with it themselves, within themselves. It's, yeah, it's purely something that they have to deal with. It's not what I'm doing, and it wasn't what my mum was doing and so with why I believe that awareness, information and education is so, so important. Once we all start talking about it openly, it becomes a lot easier for families and people living with dementia.
Hamish: So, do you have practical advice, tips, suggestions that you give people?
Miriam: I think first and foremost, you need to take a couple of big deep breaths. Yeah, because that information is new and it's...
Jim: It’s overwhelming.
Miriam: Yes, and then if you're able to sit down and talk to family members and your loved one about the situation and how you're going to do things or how they want us to do things. “Are you a carer?” You need to ask yourself that. So, I had to ask myself, “Am I a carer? Can I do this? I have four children, I have grandchildren.” I know how to be loving, gentle, caring, considerate, all those things so can I apply that to my mum and show her respectfully how I can care for her? My answer was yes. What that looked like, I wasn't sure what was involved, I wasn't completely sure. So, I felt I had to reach out and find out a lot more about what dementia was about. The other thing is, I think you need to look at is, whether you have the skills to care for someone else because you might, you would do a better job if you know that you have some of those skills but if you don't have those skills, you still can be a good carer because you can do other things that will help them and support them. You don't have to be able to be the one that showers the person. You don't have to be the one that takes them out for dinner or prepare the dinner. You might not know how to cook. There are other family members that know how to do those things.
Hamish: You now work with Dementia Australia. What, what's your job involve? What are you doing?
Miriam: Well, working with family and community. My priority is working with Aboriginal and Torres Strait Islander people but, I just love being out in the community, speaking to people and listening. Listening is really important and I find that if I listen more than, than I am talking, I learn a lot more and I'm able to... It's just about helping others. I remember being in that situation, I truly do and I know how challenging it was every day, every minute, every second of the day. And you, it consumes you as a carer, that's all you're thinking of; how can I do something better? I hope that I'm helping others in the community with that. Whether it be referrals, whether it be navigating the system and helping them, whether it be just sitting there and having a cup of tea and that's so important to do, is just to slow it all down and talk through things and know that you're not alone. There's so many people that have experienced what we have as a carer, that, and they're going through it right now and it's good to know that, you know, you're not alone. It really is.
Hamish: You've got a picture of your mum here today. Why?
Miriam: Mum's always with me, and she's my Elder. So, Hamish, I'm trying to not, I'm trying to hold back the tears now. It's because she's always been a mentor. Looked at, I looked up to her for knowledge, hope, respect, all those things and she had given it to me and I believe that she still does that today. Mm. It's just a cute reminder. Yeah.
Hamish: What's the, what's the bit of knowledge that you think of when you think of your mum?
Miriam: It's not only her, her knowledge that she learned along the way and that she gathered from her families and others, in her circumstances with the stolen generations. But it's also what she taught us, you know, strong morals and ethics and they provide a path for the decisions that you make in your life and, I think that's when I think of my mum, that's what I think of, to still be a good person and the knowledge she had, and the experiences she gave me along the way, is what I'm going to use in my, in my everyday life and that'll includes my work life too. Yeah.
Jim: That's her legacy.
Miriam: Yeah, absolutely. But that's what it's all about, isn't it?
Jim: Absolutely.
Miriam: Passing down that knowledge.
Hamish: Yeah.
Miriam: To our children, grandchildren, and so forth. Lucky enough for great-grandchildren, yeah.
Hamish: Miriam, thank you very much.
Jim: Thank you, thank you so much.
Miriam: Mm, thank you.
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[END OF RECORDED MATERIAL]
Bonus episode
Transcript
[BEGINNING of recorded material]
Speakers: Helpline Kristin, Jim Rogers
Jim: Grief isn't something you can prepare for. It looks different for everyone. As a carer, it might be constant, or it could hit you out of nowhere, but when it does, figuring out how to cope can be the hardest part. Hi, I'm Jim Rogers and this is Hold the Moment, a podcast by people living with dementia and their families. You've probably just listened to our episode on grief, where you heard Jenny talk about the waves of emotion that crash at many points of your experience with dementia. If you haven't listened to that yet, pause this and go and have a listen. But this episode features expert advice and tips from the National Dementia Helpline. The free helpline is available 24 hours a day, every day of the year. If you call, you'll speak to an advisor, just like Kristin.
Kristin: As a carer, you may find yourself feeling all sorts of feelings. You might find that you feel overwhelmed by sadness some days for no real reason, other days you might be angry and you can't figure out why. These things are normal feelings that all of us feel. And as a carer, it can be really tricky to still do all the things that you need to do to get through the day while navigating all of these feelings. Sometimes just describing how you're feeling and how things are going can help things feel just a little more manageable. When you give us a call and you're describing some of the things that you're feeling, you might be surprised if the advisor brings up the word ‘grief’. You might be thinking: “But my loved one’s alive. I see them every day. I care for them every day.” But something to think about is that grief is about loss and there's all kinds of different ways that we experience loss. When you find out that your loved one has a diagnosis of dementia, sometimes that changes the way that the future is going to look for you and your loved one. You might be thinking of all the plans that you had and how that's going to change. That's a loss, and you might feel some of the feelings associated with grief. Even after your loved one who was living with dementia has died, the helpline is still a place that you can call for support to talk things through and to navigate how you're going to be in the world now that your loved one has gone. One of the things that you might find is that you're looking for something to do, to feel a little better. We don't have the answers to make you feel 100 percent, but what we can do is try and help you tap into the things that you love. So you might find us asking you questions, like: “What did you used to love to do as a kid?” And maybe you're not going to jump rope anymore, but maybe you would like to go outside and feel the sunshine on your face — even if you can only do that for two minutes. Or maybe what you really love to do is jump in the shower and blast it hot and maybe even stay in a little longer than the three minutes that you're meant to. For some carers, they like to try something new. Have you wondered what it would be like to play pickleball? It's really up to you what you want to do to try to feel a little bit better.
Jim: A great step for carers is trying to understand your grief a little better. Dementia Australia's advisors like Kristin can help with that. The National Dementia Helpline is available 24 hours a day, every day of the year, on 1800 100 500. And if you're looking for more episodes to listen to, you can find them on Dementia Australia's website.
[END of recorded material]
Advocating for your loved one’s care needs
Why sharing your caring expertise is invaluable.
About the podcast
Hold the Moment is an award-winning podcast from Dementia Australia full of real stories about life after a dementia diagnosis.
Season Two explores caring for someone living with dementia, covering grief, relationships, self-care and navigating support systems.
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