Carer fatigue
Looking after yourself while caring for others
Transcript
[BEGINNING of recorded material]
Speakers: Julie, Kevyn DA Advocate, Support Group Leader, Support Group Member 4, Vicki Barry, Support Group Member 3, Hamish Macdonald, Support Group Member 1, Jim Rogers, Support Group Member 2
Kevyn DA Advocate: Hello. My name is Kevyn. I am a First Nations Advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today.
[People talking]
Support Group Leader: I just want to welcome you, everybody, for being here today, and coming to this group. You know, it's really, really important space for all of us, and it's one that Ann-Marie and myself feel really privileged to be part of.
Hamish Macdonald: What you're listening into right now is a peer support group. It's for carers of people living with dementia.
Support Group Leader: So just as a way of starting, if we could just go around the circle. Just share your name, who it is that you're looking after, if you would like to share — [voice fades out].
Hamish Macdonald: Now, this group meets every fortnight. They share stories, they give each other advice, and importantly, they listen.
Support Group Leader: [Voice resumes.] …to share how you're feeling today, and then maybe one thing that supports you with your own self-care.
Hamish Macdonald: Groups like this one are invaluable for carers, because the emotional toll of caring for someone living with dementia can be huge, and sometimes you just need to talk to people who've been in your shoes before.
Julie: I'm Julie and my husband, Stuart, has frontotemporal dementia with aphasia and behaviour and — but he's been in care for eight and a half years, almost. And — [voice fades out].
Jim Rogers: Whether it's professional counselling, calling up that one friend who truly gets you, or joining a peer group like this one, it's so important to have as many self-care tools as you can.
Julie: I'm grateful to be here. It's just lovely to have support.
Hamish Macdonald: Hello there. I'm Hamish Macdonald and I cared for my dad after his diagnosis with Lewy body dementia and Parkinson's.
Jim Rogers: And I'm Jim Rogers, and I'm living with younger onset Alzheimer's.
Hamish Macdonald: This is Hold the Moment, a podcast made by people living with dementia and their families.
Jim Rogers: Ham, how did it feel when you were caring for your dad? Did you feel burnout?
Hamish Macdonald: I absolutely felt burnt out. I was ruined by the whole thing at times. Yeah, it was really hard. I think Dad was never a straightforward person in the first place, and was always incredibly strong-willed and determined, and that never changed, even with his diagnosis.
Jim Rogers: I wondered where you got it from.
Hamish Macdonald: But it often meant that you were kind of trying to find this delicate balance of listening to him and his needs, and supporting him in what he wanted, whilst also being super-conscious about what was safe for him, what was available to him, in terms of options. It was just a really difficult balance. And everyone that knew him and saw him, and interacted with him heard from him on those things, and so you're often fielding this kind of ecosystem of opinions and ideas, and thoughts and suggestions, and sometimes it was just really, really hard to get it right. So, I sometimes came away from the whole experience thinking I could just never quite get it right. You know, he was never happy with whatever it was we were doing, even though, you know, I think that we went a long way to try and meet his needs, and give him a good standard of care.
Jim Rogers: I think you did, for our chats, like you always considered his feelings, what he would have liked. I think you were very consistent in what you did.
Hamish Macdonald: It was just a sort of delicate balance though, because what he wanted was not always safe or achievable, you know, he always wanted to go —
Jim Rogers: Or realistic.
Hamish Macdonald: Yeah, like he still, you know, as his Parkinson's and Lewy body advanced, he was still wanting to go on holidays on his own to Queensland. And so trying to have that conversation with him and find a compromise that would work: maybe going with a carer, or a family member or something like that, was just really challenging, because he didn't want it. And so sometimes you just had to say “no”, because it wasn't safe and, you know, frankly, he got pretty pissed off about stuff like that and would tell people he was being held against his will, and he'd been taken captive, and his human rights had been taken away by his family. So those kind of conversations, when it was fed back to you, could be quite distressing, because we were working really hard to try and give him a good quality of life. So did I feel burned out? Yes.
Jim: Yeah.
Hamish: And sometimes I swore, not really at him
Jim Rogers: Well, you swear all the time.
Hamish Macdonald: But like, you know, you get to a point where you're like, ah, boy.
Jim Rogers: Yeah.
Hamish Macdonald: I don't know what to do here.
Jim Rogers: Exhausting.
Hamish Macdonald: So Jim, you had a great chat with Vicki about the feelings of being physically and mentally overwhelmed that can come with caring. Tell us a bit about her.
Jim Rogers: Vicki cared for her husband, Michael. He was diagnosed with younger onset Alzheimer's when he was 60. She was a single mum. She raised her kids and they were entering adulthood when she and Michael met. As it is for most carers it was an extremely trying time, but for Vicki the challenges started even before Michael's diagnosis.
Vicki Barry: I'd been a single mum for 12 years, and Michael and I met at work. We worked at the same place together in local government — so we kind of had that in common and we just kind of struck up this conversation. And then I thought: “Oh, he's a pretty nice guy.” And he was single and on his own. And, yeah, we just started — I don't know how we actually went out on our first date. I do remember the date, though, we went to a very cheap Polish restaurant, because of my Polish background. And he said that was far too cheap. “I need to take you out again. And we need, you know, I need to —."
Jim Rogers: “Do a proper job.”
Vicki Barry: Yeah exactly. And that's how it went.
Jim Rogers: So how were you feeling about your future with Michael when you first got married?
Vicki Barry: Oh look, you know, I was obviously overjoyed. And having been a single mum — and we got married on the beach in Broome — had a lot to look forward to. He didn't have children. He was an only child. So my girls were in, you know their — I think, 12 and 17 at the time — so at a good age where it worked for us and had a lot to look forward to, really, and we had some really good years together. We went on holiday to Vietnam. That was a fabulous time that we had together; a good adventure after doing those hard yards. And just nice to have someone to share the evenings with. You know, have a drink together, socialise together, and we had — between us — good friends and all of those sort of things. Yeah, it was good.
Jim Rogers: What were these first signs that you noticed about Michael, when you started to, you know, some of these cognitive difficulties that he was experiencing? What were they?
Vicki Barry: Well, Michael is a good cook, and he loved — a signature dish was vegetable stir fry, and he would chop the vegetables. I've never seen anyone chop vegetables like he does. And he would be wanting to get — like soy sauce, or something from the pantry or fridge. And he'd go there to get it, and he'd say: “Where is the, like, soy sauce, or where is this?” I'd go: “That’s odd. It's right in front of him.” And then it would be things like leaving the keys behind, glasses in restaurants. He would be working really long hours and I mean, from seven o'clock in the morning until seven at night. I noticed when he was on the computer and trying to organise — he was organising a trip to base camp with friends — and he'd get lost opening up all the windows, and he couldn't navigate, you know, the computer, where he was going on things and landing on things, and getting very confused. So I started to think: “Hmm, there's something going on” and I couldn't pinpoint it. And I have to say, dementia wasn't on my radar — that didn't even come into consideration. I was actually thinking more sinister, like, could it be a brain tumour? I mean, you know, what is this? But then I did the Google thing, and the more I Googled, I started to think: “It's definitely a cognitive issue and it's starting to look a lot like dementia.”
Jim Rogers: Did you start talking to him about this? And what happened when you tried to talk to him?
Vicki Barry: Well, I did talk to Michael about it, and, you know, clearly, a very sensitive matter, but I raised it with him. And it was interesting, because at the time, I was working for headspace, the youth mental health — I’d set up the operations centre at Joondalup — so, you know, I had a pretty good idea of, you know, mental health issues and what to expect, and dealing with that sort of thing. So incredible sensitivity around it. But Michael was in absolute denial. You know, he's the guy who played football and, you know, sporting prowess and physical prowess, and that whole male thing. It was like: “How dare I even question —”
Jim: He was a fairly fit guy.
Vicki: Oh, absolutely. And no health issues. You know, really fit and healthy and it was really interesting as well, because when I wasn't getting very far with Michael, then how and where do I get support? I don't have family. My siblings live elsewhere, and my parents died when I was very young, so pretty much on my own with this, and then with Michael being an only child, and his mum, and you know, that had to be really sensitive as well. A mother's only son has — well it might look like dementia. So, who and where do I go for support? So I would — reached out to a couple of his very close friends and confided in them. I couldn't — the response was almost: “How dare you?”. Like, I felt like I was being the monster and it was disparaging, like the — yeah. So they were absolutely —
Jim: That would have been confronting.
Vicki: Yeah, not on board with that.
Jim: Had they known him a long time?
Vicki: Of course! Thirty-odd years — I'd only known him three, like, what would I know?
Jim: Yeah.
Vicki: So how —
Jim: That would have been very hard.
Vicki: Absolutely. So, I actually began to think that I was losing my mind. Like, am I going up the wrong path here?
Jim: Yeah.
Vicki: Like, have I got this wrong? So then I reached out to a counsellor. I knew I needed counselling and I was really lucky. I struck someone who really knew the dilemma that I was in. And she actually said: “You know what, Vicki, you don't even have to do this. You need to think if this is really the journey you want to be on and how difficult it could be.” And, you know, I saw her for a couple of sessions, and I really had to think hard and fast, and it was really difficult, like our marriage being so early in the piece, it really challenged even our relationship. You can imagine, I was — felt very isolated. But the good thing in seeing the counsellor is I knew I was on the right track, so it gave me a little bit of confidence. When I had been to Michael's doctor to see if he could help, the response I'd got from him was that if Michael had a problem, he would come and see him, and that I should just go home and be the good wife. So he chaperoned me out of his office and said: “And by the way, I won't charge you for the appointment.” Good on you. After the counselling and you know, the situation I was in, I thought: “Just need to get this in the open and deal with it.” So virtually, sat Michael down one afternoon and I just said: “Look, this is the deal and it's not negotiable.” And the things were, he had to go to the GP, and go through a process, and we needed to find out what was going on so that we knew what we were dealing with. And secondly, he would have to go to counselling on his own, and then we would have to go to counselling together, to redefine our relationship, if it was going to work and we were going to go forward. So to his credit, he did those.
Jim Rogers: And you were quite honest with yourself after his diagnosis about the fact that your life was, to be honest, gonna change a lot.
Vicki Barry: I had given up work. And you do, you have to let go of stuff. There's, I think, from my observation, and you know, the cohort — we have our own peer and social support group. We've got a network of 140 carer couples, and I've watched many of them struggle because they want to continue life ‘normal’ and continue to work and not be disrupted. Well, that's just not going to happen. It's unrealistic. So I think the sooner that you can come to terms and, you know, be honest about what's going on and start to address and deal with what's going on, and find ways to work in and around it, you'll be much better off. And get educated. Absolutely, knowledge is power. So for me, going to the early programs, understanding dementia, living well with dementia: the more of that you can get a hold of, the better you'll be as well. And we did, like, all of Michael's advanced care planning earlier, because I have this, you know — been working in palliative care and advanced care planning, I just knew how important that was, and I also knew that I would be the decision-maker on Michael's behalf, and I wanted to make sure that if I were making decisions on his behalf, then that they were the things that mattered for him, not for me. Like I have very different values and ideas about what I want for end-of-life compared to Michael, and I didn't want that to colour my decision-making around what he might want. So that was really important to know about what that was for Michael.
Jim Rogers: Vicki continued caring for Michael at home for almost 12 years after his diagnosis. Throughout that period, Vicki attended peer support groups like the one you heard at the beginning of this episode, but after more than a decade managing Michael's care, Vicki needed a serious break. So when an opportunity to travel to Europe arose, Vicki had an idea. She wanted to walk the world-famous Camino de Santiago.
Vicki Barry: I was actually asked to be the bridesmaid for one of my friends. He was getting married to a Portuguese girl. So it was the perfect opportunity to just take some time out. And I love being in a solitary environment and I find walking very meditative. I started out on the walk and it was interesting because it's a lot of boardwalk. It's quite slippery at — early in the morning with the dew and the moisture. And I hadn't realised, but being in Lisbon and Porto beforehand, and walking on the big, wide cobblestones, my knees had actually got quite a workout. And I don't have good knees at the best of times, and it was about three days in on my walk, and I'm weight-bearing with the pack on my back, and I'm starting to really realise I'm struggling with my knees, but I was determined I was going to do it. And I guess, in a way, that's a bit like the journey with dementia. You have to be prepared for anything along the way.
Jim: Absolutely.
Vicki: And lean in and take things as they come, really and be creative, and find work arounds, and lean in and just do what you can.
Jim Rogers: And you're also starting to notice a few health issues of your own.
Vicki Barry: Well, it wasn't until you stopped the caring, like being on the Camino and then my knees played up, and then I developed this myofascial pain where my whole body started to seize up, and I really feel that's that accumulation of the stress and just been hypervigilant for so long. You know, you're on —
Jim: Autopilot.
Vicki: Yeah, you are. You're functioning at that level for so long. It's a bit like when your kids are little and you're sleep-deprived and, you know, you just, I don't know how you function really, but somehow you do. And it was like that. It really was. So it wasn't until I was in that space that I just realised the impact for myself and the toll it was actually taking on my own health, not anything obvious, but those subtleties. And honestly, it would take me two hours in the morning to actually limber up and, you know, and I was on painkillers the whole time, and I just thought: “This is not good. I can't keep doing that.”
Jim Rogers: What were you thinking about on that trail?
Vicki Barry: That's a really good question. I think for me, I was at a point where I realised I was probably at the end of the road with my caring, my preparedness and willingness to keep caring for Michael while supporting him, and I always promised myself that if I ever got to feel resentful about my role of caring, then it would be time to stop. I was starting to think: “Well, what does the next chapter of my life look like?” And Mike had been in — he was in respite care for seven weeks, which is a big, you know, transition for him too. So that was a kind of test run as to what that might be like for him as well, and for me able to let go, and looking beyond my caring role. So as the days passed, really, I had lots of time to think about what that might look like. You know, time to get my life back in order, and it was really the perfect time and place to do that.
Jim Rogers: And how did it sort of feel when you went from him being in temporarily residential care, talk us through, how did it form a decision that this could be a good time to manoeuvre him into this permanently?
Vicki Barry: Well, having been away for seven weeks, that's quite a long period of time, and for Michael to be without seeing me. But in a way, I felt that was part of the plan. Was sometimes if we put people into respite care or care, I see people want to go and visit their loved ones every day. Well, I think there's really no point to that. If you’re going to put them in for a respite care, we really need to take the break right? So while I was away, he had had a period of respite before that, and I'd kind of had this idea that if I transitioned him slowly — so it was a two-week period, then a five-week period. My sister had actually died that year as well. It was quite an interesting year, that year. And one daughter moved to Broome, the other to Canberra, and Michael's mother died. So I had this whole year of letting go.
Jim: Big year.
Vicki: So part of being on the Camino was also processing the grief and the letting go. So there was a bit more to that story.
Jim Rogers: What about your self-care plan now, like, what do you do to make Vicki feel good now?
Vicki Barry: Yeah, well, after that myofascial pain and realising how debilitating that was, I decided to go on the self-imposed, what I call my ‘radical self-care plan’. I started doing yoga, just the subtle stretching and movement, not high gym work and high output stuff, just very gentle yoga exercises. I go to these senior fitness classes because they're cheap. I go swimming once a week on a Sunday, do one-and-a-half-Ks [kilometres] in the pool and do the sauna, the heat seems to really —
Jim: Help.
Vicki: Yeah, exactly. I do my walking. Still, I've always been good at Buddhist practice, so meditation. My sleep, though, is still something. I haven't been able to restore a good sleep pattern. I think, all the nights of getting up and down and, you know, de-escalating Mike and just redirecting him, and things and his hallucinations, that's taken its toll. So I'd probably sleep four hours solid and that's about it. But I seem to function quite well on that, but that's something that I'm still working on.
Jim Rogers: For people listening, would you offer any advice and tips as a carer of ways to help prevent that burnout?
Vicki Barry: Find time for yourself, you know, make use when you've got the support worker or those little opportunities you might get. Not be afraid to ask for help and when you do ask for help, make sure there's specific requests, so people know how they can help you. Otherwise, they just won't ask and won't offer. So certainly, looking at what/who you've got in your network, calling in help when you need it, taking some time for yourself and finding those things that you really enjoy. Try and find the enjoyment; the things that, you know, you like to do.
[Music plays]
Support Group Member 1: What do I do? I've got lots of support groups. I do days for girls’ sewing and I've got church groups, and I've got my university group get-together.
Support Group Member 2: What do I do? I belong to a photo club, which meets twice a month.
Support Group Member 3: I always played golf, but I've sort of taken an extra day of golf. And I've got three young grandchildren, so I spend a lot of time minding them, taking them to soccer training and just having some fun with them.
Support Group Member 4: So I've got lots of things to do and coming here is part of that routine: has been for a long time.
Vicki Barry: And then, like I said before, knowledge is power. So I would say, definitely know what you're up for. Don't go blind. You need to know what you're dealing with and how you can manage it. Seek help. There is so much support out there. You know, Dementia Australia, Carers Australia — there's so much help out there, in terms of services, but it's definitely your immediate support group. And I can tell you now, without the peer support group that we established, I don't know where I'd be. We've managed to — we've befriended three couples — and we regularly went on holidays together, like we took the train to Kalgoorlie. We've been down to Esperance. We've been to Albany together. We've swam with the whale sharks in Exmouth together. I mean, we've — it's been amazing, so, and because we get it, it's a really nice way to be in at the end of the day, we can just sit and relax and have a meal together and a drink and that sort of thing.
Jim Rogers: And how are you doing now? How are you feeling now? What's the future look like?
Vicki Barry: I have no idea what's ahead of me. And I guess that's a little bit of the mystery of life. I always say there's a mastery and mystery to life. And I think, you know, mastery, I think I've mastered the journey with dementia pretty well with Mike, and I have to say, and we've done a good job together on that journey. And we're in a nice place now, where I visit Mike twice a week, and I really connect with Mike on a level I never thought possible in any relationship, and I don't think I would have experienced the level of connection I have with Michael now, had we have not journeyed together with dementia. It's — I can't even describe what that's like. It's quite profound and I never thought I would ever say that. You know, when there was a time when I would have left him, possibly.
Jim: Yeah, of course.
Vicki: So to get to this stage is, you know, really that pleasant persistence and journey.
Jim: It’s an achievement in itself.
Vicki: Yeah, exactly. So that feels really good. And I really look forward to seeing Michael when we visit and we go out and do things together. Like tonight, we've got the closing event for our YODyssey Yorta sea, our annual art exhibition. On Friday, he's going to lunch at the angling club with his mates, who — they won the premiership 50 years ago: footy in Papua New Guinea. So, you know, he's still connected to those guys. So, there's still a lot to look forward to and look, I don't know what the future holds for me at the moment, I'm working one day a week, which is nice — to be back in in the workforce again. I am looking forward to retirement and taking things easy, but when and what that will look like, I don't know. I just go day-to-day and it's a bit like living with dementia. I'm totally in the present moment.
Jim Rogers: I think that's what you got to do, be in the present and take each day one day at a time. Well, listen, Vicki, it's been such a pleasure to meet you and thanks for coming in and chatting.
Vicki Barry: Thank you. Thank you, Jim. It's been a pleasure as well.
[Music plays]
Jim Rogers: Thanks again to Vicki for sharing her story with us.
Hamish Macdonald: Yeah, I know exactly what Vicki means when she talks about the physical side of things. Caring can take such a big toll on your mind and your emotions, but actually, you don't often think about what it does to your body. It's actually often when you outsource some of the physical aspects of caring that you finally feel what it's done to your body.
Jim Rogers: If you could relate to what Vicki was saying about her experience caring for Michael, or, if you want some tips on looking after yourself as a carer, check out our bonus episode about burnout and self-care.
Hamish Macdonald: You'll hear from Kristin, who works on Dementia Australia's National Helpline. She'll give you simple, practical tips for self-care. And if you want to go a bit deeper, you can always call the helpline yourself.
Jim Rogers: The helpline is free and available 24/7, every day of the year, just call 1800 100 500. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios. You can find more episodes and resources on Dementia Australia's website, dementia.org.au. The show is hosted by me, Jim Rogers.
Hamish Macdonald: And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Gia Moylan. The producers are Madeleine Hawcroft and Liam Riordan. Production manager is Ann Chesterman. Sound design by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[END of recorded material]
About the episode
Caring for someone living with dementia can be overwhelming, not just emotionally but also physically. Here’s how to keep healthy while looking after a loved one.
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Vicki: I was at a point where I realised I was probably at the end of the road with my caring and I always promised myself that if I ever got to feel resentful about my role of caring, then it would be time to stop. I hadn't reached that point, but I felt this need to reclaim my own life.
Jim: Take us back to when you first met Michael. Tell us about your husband.
Vicki: I'd been a single mum for 12 years, and Michael and I met at work. We worked at the same place together in local government so we kind of had that in common and we just kind of struck up this conversation. Then I thought, "Oh, he's a pretty nice guy" and he was single and on his own, and yeah, we just started… I don't know how we actually went out on our first date, I don't know how that happened and I do remember the date though. We went to a very cheap Polish restaurant because of my Polish background, and he said, "That was far too cheap, I need to take you out again, and we need, you know, I need to..."
Jim: Do a proper job.
Vicki: Yeah, exactly, and that's how it went.
Jim: So how were you feeling about your future with Michael when you first got married?
Vicki: Oh look, you know, I was obviously overjoyed and having been a single mum, and we got married on the beach in Broome, I had a lot to look forward to. He didn't have children, he was an only child so my girls were in, you know, their, I think 12 and 17 at the time so at a good age where it worked for us, and had a lot to look forward to, really. And we had some really good years together, we went on holiday to Vietnam, that was a fabulous time that we had together, a good adventure, and we liked walking and things like that together. So yeah, life was really good.
Jim: What were these first signs that you noticed about Michael when you started to, you know, some of these cognitive difficulties that he was experiencing? What were they?
Vicki: Well, Michael is a good cook, and he loved it, his signature dish was... er... vegetables stir-fry and he would chop the vegetables, and you know, he was really, I've never seen anyone chop vegetables like he does. And he would be wanting to get like soy sauce or something from the pantry or fridge and he'd go there to get it, and he'd say, "Where is the like, soy sauce or where is this?" Or I'd go, “That's odd, it's right in front of him”. So, yeah, and then it would be things like leaving the keys behind, glasses at restaurants. He would be working really long hours and I mean from seven o'clock in the morning till seven at night. I noticed when he was on the computer and trying to organise it; that he was organising a trip to base camp with friends, and he'd get lost opening up all the windows and not knowing. He couldn't navigate, you know, the computer where he was going on things and landing on things and getting very confused and I started to think, “Hmm, there's something going on” and I couldn't pinpoint it. And I have to say dementia wasn't on my radar, that didn't even come into consideration, I was actually thinking more sinister, like could it be a brain tumour? I mean, you know, what is this? But then I did the 'Google' thing and the more I Googled, I started to think it's definitely a cognitive issue and it's starting to look a lot like dementia.
Jim: Did you start talking to him about this and what happened when you tried to talk to him?
Vicki: Well, I did talk to Michael about it and you know, clearly very sensitive matter. But I raised it with him and it was interesting because at the time I was working for 'Headspace', the youth mental health, I'd set up the operation centre at Joondalup. So, you know, I had a pretty good idea of, you know, mental health issues and what to expect and dealing with that sort of thing, so incredible sensitivity around it. But Michael was in absolute denial you know, he's the, the guy who played football and you know, sporting prowess and physical prowess and that whole male thing. It was like, how dare I even...
Jim: Clearly, he was a fairly fit guy.
Vicki: Oh, absolutely and no health issues, you know. Really fit and healthy and it was really interesting as well because when I wasn't getting very far with Michael then how and where do I get support? I don't have family; my siblings live elsewhere and my parents died when I was very young, so pretty much on my own with this. And then with Michael being an only child and his mum, and you know, that had to be really sensitive as well. A mother's only son has what might look like dementia, so who and where do I go for support? So, I would, reached out to a couple of very close friends and confided in them. I couldn't, the response was almost, "How dare you?" Like, I felt like I was being the monster, and it was disparaging like, the yeah, so they were absolutely...
Jim: That would have been confronting.
Vicki: Yeah, not on board with that.
Jim: Had they known him a long time?
Vicki: Of course, 30 odd years, I'd only known him three. Like what would I know?
Jim: Yeah, that would've been very hard.
Vicki: Absolutely, so I actually began to think that I was losing my mind, like am I going up the wrong path here? Like, have I got this wrong? So, then I reached out to a counsellor, I knew I needed counselling and I was really lucky I struck someone who really, yeah, and knew the dilemma that I was in. And she actually said, "You know what Vicki, you don't even have to do this. If you're, you know, you need to think if this is really the journey you want to be on, and how difficult it could be." And you know, I saw her for a couple of sessions and I really had to think hard and fast, and in the end, and it was really difficult, like, in our marriage being so early in the piece, it really challenged even our relationship. You can imagine, I was…
Jim: Absolutely.
Vicki: …felt very isolated but the good thing in seeing the counsellor is I knew I was on the right track so it gave me a little bit of confidence. When I had been to Michael's doctor to see if he could help, the response I'd got from him was that if Michael had a problem he would come and see him and that I should just go home and be the good wife. So, he chaperoned me out of his office and said, "And by the way, I won't charge you for the appointment." Good on you. So then, I, after the counselling and you know the situation I was in, I thought, I just need to get this in the open and deal with it. So virtually, sat Michael down one afternoon and I just said, "Look, this is the deal, and it's not negotiable." As things were, we had to, he had to go to the GP and go through a process, and we needed to find out what was going on so that we knew what we were dealing with. And secondly, he would have to go to counselling on his own, and then we would have to go to counselling together, to redefine our relationship, if it was going to work and we were going to go forward, so to his credit, he did those.
Jim: So, after Michael's diagnosis, what did day-to-day life look like for you?
Vicki: You know, I'd given up work and you do, you have to let go of stuff. There's, I think, from my observation and you know the cohort, we have our own peer and social support group. We've got a network of 140 carer couples, and I've watched many of them struggle because they want to continue life normal and continue to work and not be disrupted. Well, that's just not going to happen, it's unrealistic. So, I think the sooner that you can come to terms, and you know, be honest about what's going on and start to address and deal with what's going on and find ways to work in and around it, you'll be much better off. And get educated, absolutely, knowledge is power. So, for me, you know, going to the early programs, understanding dementia, living with dementia is, you know, the more of that you can get a hold of the better you'll be as well. And we did like all of Michael's advanced care planning early up because I have this, you know, being working in palliative care and advanced care planning, I just knew how important that was. I also knew that I would be the decision maker on Michael's behalf and I wanted to make sure that if I were making decisions on his behalf then that they were the things that mattered for him, not for me. Like, I have very different values and ideas about what I want for end-of-life compared to Michael and I didn't want that to colour my decision-making around what he might want so that was really important to know about what that was for Michael.
Jim: Take us to the Camino de Santiago and you're on that trail, tell me, what do you see? What do you hear, and how does your body feel?
Vicki: Well, I started the Camino last year actually in Porto. So, I did the Portuguese Camino and I decided to do the coastal walk, and I really needed a break. I'd been 12 years supporting Michael living with young onset dementia and I was actually asked to be the bridesmaid for one of my friends; he was getting married to a Portuguese girl, so it was a perfect opportunity to just take some time out, be kind to myself and I love being in a solitary environment and I find walking very meditative. I started out on the walk and it was interesting because it's a lot of boardwalks, it's quite slippery at early in the morning with the dew and the moisture and I hadn't realised, but being in Lisbon and Porto beforehand, and walking on the big wide cobblestones, my knees had actually got quite a workout and I don't have good knees at the best of times. And it was about three days in on my walk, and I'm weight bearing with the pack on my back and I'm starting to really realise I'm struggling with my knees but I was determined I was going to do it and I guess in a way that's a bit like the journey with dementia, you have to be prepared for anything along the way.
Jim: Absolutely.
Vicki: And lean in and take things as they come really, and be creative and find workarounds and lean in, and just, yeah, do what you can.
Jim: And you're also starting to notice a few health issues of your own at that point.
Vicki: Yes, absolutely.
Jim: Where I think you'd done so much.
Vicki: Yeah, and you know, it wasn't until you stopped the caring like being on the Camino and then my knees played up and then I developed this myofascial pain where my whole body started to seize up and I really feel that's the accumulation of the stress and just being hypervigilant for so long. You know, you're on, you're on…
Jim: Autopilot.
Vicki: Yeah, you are. You're functioning at that level for so long it's a bit like when your kids are little and you're sleep deprived and you know, you just, I don't know how you function really, but somehow you do and it was kind, it was like that, it really was. So, it wasn't until I was in that space that I just realised the impact for myself and the, what it was, the toll it was actually taking on my own health, not anything obvious, but those subtleties. And honestly, it would take me two hours in the morning to actually limber up and you know and I was on painkillers the whole time and I just thought, this is not good, I can't do that, keep doing that.
Jim: Tell me, what were you thinking about on that trail?
Vicki: That's a really good question. I think for me, I was at a point where I realised I was probably at the end of the road with my caring, my preparedness to and willingness to keep caring for Michael while supporting him and I always promised myself that if I ever got to feel resentful about my role of caring, then it would be time to stop. I hadn't reached that point, but I knew that I probably, I needed, I felt this need to reclaim my own life because I had, you know, given up work. Tried different, like you know, I was, became the Mahjong Madness Queen because I needed something to do but on the walk, I guess I was starting to think, well, what does the next chapter of my life look like? And Mike had been in, he was in respite care for seven weeks, which is a big, you know, transition for him too. So that was a kind of test run as to what that might be like for him as well and for me able to let go and looking beyond my caring role. So, as the days passed I really, I had lots of time to think about what that might look like, you know, time to get my life back in order and it was really the perfect time and place to do that.
Jim: And how did it sort of feel when you went from him being in temporarily residential care? Talk us through how did it form a decision that this could be a good time to manoeuvre him into this permanently?
b: Well, having been away for seven weeks, that's quite a long period of time, and for some, for Michael to be without seeing me. But in a way, I felt that was part of the plan, was sometimes if we put people into respite care or care, I see people want to go and visit their loved ones every day. Well, I think there's really no point to that if you're going to put them in for a respite care, we really need to take the break.
Jim: Right.
Vicki: So, while I was away, he had had a period of respite before that and I'd kind of had this idea that if I transitioned him slowly; so, it a was two-week period, then a five-week period. My sister had actually died that year as well, it was quite an interesting year that year and one daughter moved to Broome, the other to Canberra and Michael's mother died. So, I had this whole year of letting go and part of being on the Camino was also processing the grief and the letting go. So, there was a bit more to that story.
Jim: What about your self-care plan now? Like, what do you do to make Vicki feel good now?
Vicki: Yeah, well after that myofascial pain and realising how debilitating that was, I decided to go on the self-imposed, what I call my radical 'self-care plan.' I started doing yoga, just the subtle, the stretching and movement so nothing, you know, not high gym work and high output stuff, just very gentle, yoga exercises. I go to these senior fitness classes because they're cheap. I go swimming once a week on a Sunday, I do 1 ½ km's in the pool and do the sauna; the heat seems to really...
Jim: Help.
Vicki: Yeah, exactly. I do my walking still, so, yeah, and just, I've always been good at Buddhist practise, so meditation. My sleep though is still something I haven't been able to restore a good sleep pattern. I think all the nights of getting up and down and you know, deescalating Mike and just redirecting him and things and his hallucinations, that's taken its toll. So, I'd probably sleep four hours solid and that's about it but I seem to function quite well on that, but that's something that I'm still working on.
Jim: For people listening, would you offer any advice and tips as a carer of ways to help prevent that burnout? Self-care things that are good for you personally that you find are good things to do?
Vicki: Find time for yourself. You know, make use when you've got the support worker or those little opportunities you might get. Not be afraid to ask for help and when you do ask for help, make sure there's specific requests, so people know how they can help you otherwise, they just won't ask and won't offer. So, certainly looking at what, who you've got in your network, calling in help when you need it, taking some time for yourself and finding those things that you really enjoy. Try and find the enjoyment, the things that you know, you like to do and then, like I said before, knowledge is power. So, I would say definitely know what you're up for. Don't go blind, you need to know what you're dealing with and how you can manage it. Seek help. There's so much support out there you know, Dementia Australia, Carers Australia, there's so much help out there, absolute, in terms of services but it's definitely your immediate support group and I can tell you now without the peer support group that we established, we'd be, I don't know where I'd be. We've managed to, we've befriended three couples, and we regularly went on holidays together. Like, we took the train to Kalgoorlie, we've been down to Esperance, we've been to Albany together, we've swam with the whale sharks at Exmouth together, I mean it's been amazing. So, and because we get it, it's a really nice way to be in at the end of the day, we can just sit and relax and have a meal together and a drink and that sort of thing.
Jim: And how are you doing now? How are you feeling now? What's the future look like?
Vicki: I have no idea what's ahead of me and I guess that's a little bit of the mystery of life. I always say there's a mastery and mystery to life and I think, you know, mastery, I think I've mastered the journey with dementia pretty well with Mike I have to say. And, we've done a good job together on that journey, and we're in a nice place now where I visit Mike twice a week and I really connect with Michael on a level I never thought possible in any relationship and I don't think I would've experienced the level of connection I have with Michael now had we have not journeyed together with dementia. It's, I can't even describe what that's like, it's quite profound and I never thought I would ever say that, you know, when there was a time when I would've left him, possibly.
Jim: Yeah, of course.
Vicki: To get to this stage is, you know, really that pleasant persistence and journey.
Jim: An achievement in itself.
Vicki: Yeah, exactly and so that feels really good, and I really look forward to seeing Michael when we visit, and we go out and do things together. Like, tonight we've got the closing event for our Odyssey, our annual art exhibition. On Friday, he's going to lunch at the Angling Club with his mates, who won the premiership 50 years ago footy in Papua New Guinea. So, you know, he's still connected to those guys so there's still a lot to look forward to and look, I don't know what the future holds for me at the moment. I'm working one day a week, which is nice to be back in, you know, in the workforce again. I am looking forward to retirement and taking things easy, but when and what that will look like, I don't know. I just go day-to-day and it's a bit like living with dementia, I'm totally in the present moment.
Jim: I think that's what you got to do.
Vicki: Be in the present and take each day one day at a time.
Jim: Yeah. Well, listen Vicky, it's been such a pleasure to meet you and thanks for coming in and chatting.
Vicki: Thank you, thank you, Jim, it's been a pleasure as well.
Jim: Hold the moment is a podcast from Dementia Australia produced by Deadset Studios.
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[END OF RECORDED MATERIAL]
Bonus episode
Transcript
[BEGINNING of recorded material]
Speakers: Helpline Kristin, Jim Rogers
Jim Rogers: When you're busy caring for others, it's easy to put your own needs last, but you can't pour from an empty cup. That's why having a self-care toolkit is so essential, whether it's talking to a professional, leaning on friends or joining a peer group. It can make all the difference with managing stress and staying healthy. Hi, I'm Jim Rogers, and this is Hold the Moment, a podcast by people living with dementia, and their families. And in this short bonus episode, you'll hear a few tips from an advisor on the National Dementia Helpline. They're available 24 hours a day, every day of the year. If you call, you'll speak to an advisor, just like Kristin.
Helpline Kristin: As a carer, you might feel guilty about setting time apart for yourself, but sometimes those few minutes or few hours or few weeks’ break is exactly what you need to keep your health on track, to keep your heart on track and to be able to continue to connect with your loved one who's living with dementia. You might find that there are so many demands on your time, so many things that feel like they have to get done, and it can be really difficult to carve out time for yourself. One of the things that we find is that you really can't be your ‘best self’ unless you do take care of you, and that doesn't mean that you spend a whole day at the spa. Very few of us have time for that, but if you can schedule it in, you should. Sometimes looking after yourself is one hour every week, having lunch with your best friends. Maybe it's going for a half an hour walk to the dog park, even though you don't have a dog. Some days it might just be one five-minute cup of tea. Another tip for caregivers is to try to remember your own health appointments. You might be so good at making sure that your loved one is getting to all of the appointments that they need to on time, that you'll forget to book yourself into the dentist or for the check-up that you need with the doctor. Really try to set aside that time so that you can take care of yourself as well. There are a number of different things that you might find work for you to take some time out and help you feel better. Some carers find attending a support group with others who are caring for a loved one living with dementia is a great way to make connections and to get a break. Other people find it really helpful to talk one on one. If you'd like to speak to another person who's caring for a loved one living with dementia, Dementia Australia has a peer connect program that might work really well for you. Another thing that you might find is that you're increasingly irritated, worried, frustrated, and you can't really put your finger on why. It's like so much of your day is spent caring for other people and doing things that you've forgotten to take a minute to think about what you need. You might have skipped a meal. You might have forgotten to drink water all day or not even stop to take a breath. If that's something that's happening for you, you might find that you're getting sick more often than you used to, or you aren't finding joy in the things that you used to really love. All of those things are things that carers can sometimes experience, because the role of caring can take a lot from them. If you called me on the helpline and we were talking about what it was like in your carer role, I might describe it as having one of those big hiking backpacks on your back, and you've packed everything in it that you think you need, and as you're hiking along, you just think: “This is what I need. This is what I need.” And then when you stop for a break and you take off the bag, you realise how much your back hurts; how heavy it is. You might decide to take a look at what's in your backpack. Is everything there something that you need? Could you rearrange it so the heavy things were in a different spot where they could be more well-supported? Have you got a friend that's hiking with you that could carry your load for a bit? The same thing is true as a carer. It is okay to take a break. It is okay to rearrange the things that you're juggling in your day-to-day life. It's also okay to ask for help.
[Music plays]
Jim Rogers: Dementia Australia's helpline is available 24 hours a day, every day of the year. Call them on 1800 100 500 or connect with them via webchat or email, and there's plenty more episodes of Hold the Moment’s podcast available right now, either in your favourite podcast app or on the Dementia Australia website.
[END of recorded material]
How to avoid carer burnout
Caring for a loved one with dementia can be all-consuming. While you’re busy caring for your loved one, remember to care for yourself as well.
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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The National Dementia Helpline
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