- Hello, my name is Kevin. 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 joined 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. [Backround talking]
- All day... ...if they don't come and get us, we'll move... [muffled talking in background] - So just want to welcome you everybody for being here today and, and coming to this group. You know, it's really, really important space for all of us and it's one that Emery and myself feel really privileged to be part of. - What you're listening into right now, is a peer support group. It's for carers of people living with dementia.
- 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... - Now this group meets every fortnight. They share stories, they give each other advice. And importantly, they listen. - ...to share how you're feeling today, and then maybe one thing that supports you with your own self-care. - 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.
- I'm Julie, and my husband Stewart, has Frontotemporal Dementia with aphasia and behaviour and, but he's been in care for eight and a half years almost, and... - 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. - I'm grateful to be here. It's just lovely to have support. [Music] [Music] - Hello there. I'm Hamish Macdonald.
And I cared for my dad after his diagnosis with Lewy body dementia and Parkinson's. - And I'm Jim Rogers. And I'm living with younger onset Alzheimer's. - This is Hold the Moment, a podcast made by people living with dementia and their families. - Hame, how did it feel when you were caring for your dad? Did you feel burnout? - 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 changed even with his diagnosis, so... - I wondered where you got it from. (chuckling) - 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 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, we, I think that we went a long way to try and meet his needs and, and give him a good standard of care. - I think you did, from our chats. Like you always considered his feelings what he would've liked. I think you were very consistent in what you did. It, it was just a sort of delicate balance though, because, what he wanted was not always safe or achievable, you know, he always to go... - Or realistic.
- Yeah. Like he still, you know, 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 is being held against his will and he'd been taken captive and his human rights had been taken away by his family (chuckling) So those kind of conversations when it was fed back to you, could be quite distressing (-Yeah) Because we were working really hard to try and give him a good quality of life. So, did I feel burned out? Yes. - Yeah. - And sometimes I swore. Not really at him.
- Well you swear all the time. - But like I, you know, you get to a point where you're like, "Ah, boy", - Yeah. - I don't know what to do. - Exhausting. - 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. - 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. - 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... - Do a proper job. - Yeah, exactly. And that's how it went. - So how were you feeling about your future with Michael when you first got married?
- 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, were it worked for us and had a lot to look forward to really. And, we had a, 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. It was good. - 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? - Well, Michael is a good cook. And he loved it, his signature dish was, vegetable stir fry.
And he would chop the vegetables, [Chopping sounds] (-fuck), 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 and 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, 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. (-Yeah) 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. - Did you start talking to him about this? And what happened when you tried to talk to him?
- 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 in 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 question... - A fairly fit guy. - Oh absolutely. And no health issues, you know, really fit and healthy and, and it was really interesting as well because when I, 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, 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... - Would've been confronting. - Yeah, not on board with that. - Had they known him a long time? - Of course, 30 odd years I'd only known him three. Like what would I know? - Yeah. - So how... - That would've been very hard. - Absolutely. So, I actually began to think that I was losing my mind, like am I going up the wrong path here? (-Yeah) 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 in, 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. - And you were quite honest with yourself after his diagnosis about the fact that your life was, to be honest, going to change a lot. - I'd, have 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 early up 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, to know about what that was for Michael. - 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.' - 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. 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. - Absolutely. - And lean in and take things as they come really. And be creative and find work-arounds and lean in and just, you know, do what you can. - And you're also starting to notice a few health issues of your own.
- 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 being hypervigilant for so long. You know, you're on, you're on - Autopilot. - Yeah, you are. You are 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, the toll it was actually taking on my own health. Not, anything obvious but those subtleties.
And honestly I 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. - What were you thinking about on that trail? - 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. - 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? - 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? (-Yeah) 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 would 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. (- Big year) 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. - What about your self-care plan now? Like what do you do to make Vicki feel good, now?
- 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 the, these senior fitness classes, cause they're cheap. I go swimming once a week on a Sunday. I do 1.5km's in the pool and do the sauna. The heat seems to really - Help?
- Yeah, exactly. I do my walking still. 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.
- For people listening, would you offer any advice and tips as a carer of ways to help prevent that burnout? - 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. - 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. - What do I do? I, I belong to a photo club, which meets twice a month.
I always play golf, but I've sort of taken the 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. - So I've got lots of things to do. And coming here as part of that routine, has been for a long time... - 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, 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. - And how are you doing now? How are you feeling now? What's the future look like? - 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, mastering. I think I've mastered the journey with dementia pretty well with Mike and I, I have to say. And we've done a good job together on that journey. And, we are in a nice place now where, 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. Its, 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. (- Yeah, of course) So to get to this stage, is, you know, really that pleasant persistence and journey. - It's achievement in itself. - Yeah, exactly. So, that feels really good.
And I really look forward to seeing Michael when, 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 they won the premisership 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. - I think that's what you got to do. (-Yep) Be in the present and take each day, one day at a time. (-Yeah) Well, listen, Vicky, it's been such a pleasure to meet you and thanks for coming in and chatting.
- Thank you. Thank you, Jim. It's been a pleasure as well. [Music] [Music] [Music] - Thanks again to Vicki for sharing her story with us. - 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.
- 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. - You'll hear from Kristen 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. - The helpline's free, and available 24/7, every day of the year.
Just call 1800 100 500. [Music] Hold the Moment is a podcast from Dementia Australia. Produced by Dead 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. - 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. [Music] [Music] [Music]