Tanya became a carer long before she realised how much it would ask of her. Supporting her husband through Alzheimer’s and vascular dementia, caring for her father through cancer and grieving her mother’s sudden death left her living in a constant state of crisis. Tanya speaks with Patty Kikos about ambiguous grief, burnout, isolation and the pain of watching someone you love slowly change while the world around you keeps moving. She shares what happened when she finally found support, reclaimed pieces of herself and discovered that carers deserve care too.
Content warning: This episode discusses grief, terminal illness and isolation. Listener discretion is advised. This podcast is for general informational purposes and isn't a substitute for professional mental health advice or treatment.
Disclaimer: The views, language, experiences and opinions shared by guests on this podcast are their own and do not necessarily reflect the views of Mental Health Carers NSW (MHCN) as an organisation.
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Jonathan
MHCN acknowledges the Traditional Custodians of Country and pays respect to elder’s past, present and emerging. We are the peak body for mental health carers in New South Wales, and we advocate for carers rights and systemic reform.
Jonathan
Caring Between Minds. Mental Health Advocacy in Action.
Patty
This episode discusses trauma, caring and lived experiences. Please listen at your own pace and reach out to support services if you need to.
Tanya
It's so hard when you have an emotional need too, and that's just completely gone. I miss the person that he used to be and the interest that you could show in each other. It just disappears. And then you experience this grief along the way. You watch somebody's personality and their independence just go. It fades over time, but the result in the end, it's the loneliest kind of grief because other people don't understand it either, unless you're in this position and you're caring for somebody, similarly, you really can't understand it.
Patty
Today's guest knows what it means to carry the weight of multiple lives at once. Over the past several years, Tanya has gone from wife and daughter to full time carer with her husband's Alzheimer's diagnosis, while simultaneously caring for her father through cancer treatment. And that all happened after the sudden loss of her mother. What started as helping the people she loved, slowly became a 24/7 role that consumed nearly every part of her life.
Living in a regional area with limited support, Tanya found herself juggling hospital visits, medications, personal care, crisis management and grief, often with very little time to process what any of it was doing to her own mental health. Somewhere along the way, the woman who once travelled, planned holidays and lived independently became someone simply trying to survive until the next day.
Tanya speaks openly about carer burnout, anticipatory grief, losing her sense of self and the emotional reality of loving someone whose mind is slowly changing. But she also shares what happened when support finally did enter her life, and how small moments of respite. Connection and being seen again, reminded her that carers’ needs really do matter. I'm, Patty Kikos, and this is Tanya's story.
Tanya
I care for my husband, who lives with Alzheimer's and vascular dementia, and I previously cared for my father during his cancer journey. The hardest part is that the dementia changes every part of daily life. You've got to supervise them all the time. You’ve got to toilet them, dress them, supervise their eating and be there for them emotionally. It's just so hard watching someone you love slightly lose parts of themselves. I guess it's just it's just heartbreaking and it just gradually becomes a 24/7 responsibility. Until it just ended up taking over my own identity.
Patty
Before caring became your full time reality. Who was Tanya? What did life look like before all of this?
Tanya
Before caring, I had a really different life. And I had an identity of my own. I worked; I was a Payroll Accounts Manager. I travelled often. I was always planning holidays. In between time. I had things to look forward to. I was always looking for stage plays, and concerts to go to. Things like that.
Patty
Tanya, do you think your natural propensity to be organized and efficient helps you in your caring role today? I mean, it's a very good transferable skill.
Tanya
Oh, absolutely. I don't know how I would have coped if I hadn't have had that training behind me. I had hobbies and friendships and I was independent. And most importantly, I think I was always a wife and a daughter first, not just a carer. Looking back now, though, that whole version of me disappeared very quickly.
Patty
People often say things coming three’s and, in your case, life seemed to change very dramatically all at once. Can you take us back to when your mum first became unwell and how everything unfolded from there?
Tanya
Well, my mum was unwell my entire life because she had polio as a child, but 6 years ago she was very ill. She passed away suddenly after a massive stroke. The day she was diagnosed with Lewy Bodies Dementia actually. And she passed away within a 24 hour period.
Patty
Tanya, does this mean that you were actually a Coung Carer? Did your mum's polio diagnosis mean that she was limited in her capacity to move or to be agile?
Tanya
Yeah, I hadn't actually thought about that. I hadn't given that much thought, but I guess I was. I was always since the time I could drive, I was taking mum to her doctor's appointments. So yes, in fact I was, and I barely had time to process losing her in death, before my father was then diagnosed with cancer and that was only 2 weeks after she died.
Patty
Oh, Tanya. Oh, my goodness.
Tanya
The week after we were getting everything ready for mum's funeral and then the 8 months after that, my husband was formally diagnosed with Alzheimer's Dementia.
Patty
Oh my goodness. You lived about eight years in those eight months.
Tanya
Probably you could say that yep.
Patty
And I'm imagining that everything would have happened so quickly. Did you go straight into survival mode?
Tanya
Yeah. I didn't have any time to grieve. There was just always another crisis unfolding. It really it just hit me like an absolute tsunami. I just was reacting as best I could to whatever was presented to me on the day
Patty
I bet! There's a saying; in for a penny for a pound, and it sounds like once you stepped into caring, there was no halfway point. When did you realise that your role had shifted from daughter and wife, into full time carer?
Tanya
I realized that I’d gone from helping my loved ones to completely managing their lives. My mum had looked after my dad for all those years and suddenly there was no one to look after him. So, I had to. There were no choices. It just was thrust upon me. I had already stopped working at my job that I had for 12 years, to look after my husband.
But suddenly a month after that, my mum passed away and suddenly I was looking after my dad as well. I became totally responsible for him, looking after all his appointments, his medication. He was still doing a little bit of his personal care, but I had to step in there as well and take over all the duties that my mum had previously done. So, that included nursing because my dad had a lot of wounds as he had bad skin integrity, so I didn't have any medical background. And my dad started having serious falls. So, there were more wounds to dress.
Patty
So you essentially went from numbers to nursing?
Tanya
Yeah, that's right, and without any training! I'd never dress wounds like that before. I had to learn pretty quick smart. At the time I was juggling 2 households as well. We used to live side by side, but nevertheless I was constantly and literally running between the 2 houses. There was just never a moment to stop. I just had to keep going. There was no choice.
Patty
While you were caring for your dad through his cancer treatment, your husband was also beginning to decline cognitively. What was it like trying to hold both of those worlds together at the same time?
Tanya
Well, I was taking my husband with me to all the appointments that I had to take my dad to. And this was all through the Covid lockdowns right at the start of Covid. So, there were no vaccines, no nothing.
Patty
So this all started for you during a pandemic and then lockdown and then the inevitable forced vaccinations?
Tanya
Yeah that's right. And back then, only one person was allowed with the patient at the hospital. But I had my husband in tow. So, I had no choice, I had to take him with me. There was no one to care for him. And so, I was going backwards and forwards to the cancer hospital. I was just so exhausted.
You felt torn between the two. You had your husband on one hand and then your father on the other. Both were helpless, so that you just had to split yourself in 2, to care for both of them. It was just unrelenting. And I if I didn't watch my husband, something would happen to him. But yet my dad needed my full time attention, so I didn't have any room for me. I couldn't fall apart because they both needed me.
Patty
You've spoken about your dad becoming a kind of buffer in the household. Can you explain what that means and what changed after he passed away?
Tanya
Well, I didn't realise until after he did pass away really how much emotional support he did give me, just by his she presence.
Patty
It was the one that was being cared for. He still emotionally cared for you.
Tanya
He did! Yeah. Just by his sheer presence being here. He was somebody to talk to because cognitively he was fine. But it was it was more physical problems with my dad. And once he was gone, everything just changed. Suddenly, I was alone, you know, that person had gone, and I didn't have anyone to bounce off.
Patty
And you were managing your husband's illness. How do you manage your husband's frequent demands on your attention and on your time?
Tanya
It's pretty hard, but you really have to just… I've learned, well, I’m learning to tone things down and I have to de-escalate the situation, which means I have to change my tone. I have to think about the consequences of how I might react to him. One day he was agitated and I was trying to pay bills on the computer.
So, you know, you have to put your credit card details in and so forth, so you really have to concentrate. So, I couldn't concentrate on the numbers that I was putting in. And he was making a lot of noise. He was he was getting really agitated. So, I locked the door. And that was a mistake because then he really, really lost it.
And, you know, he broke something outside, but he doesn't have the capacity to understand that I need to address things. So, I try to redirect now. And I didn't realise that my dad had eased a lot of that pressure in the home. He liked to watch TV, and so my husband had somebody to take notice of him and to be company for him while I tended to those things. So, it really changed things in the household when my dad passed away.
Patty
I'm sure it changed the entire emotional structure of your life.
Tanya
My dad was sort of a little bit aside from that, so he could see what the future held, especially when he got his diagnosis. He was very concerned for me, and he spoke to social workers at the hospitals about it, and he expressed that concern. He was worried about what was going to happen to his little girl, when he wasn't here anymore.
Patty
Of course he was! He was your daddy. And he was concerned about you. A lot of carers talk about ambiguous grief, you know, grieving someone who is still physically here but is ever changing mentally and even emotionally and is possibly unpredictable. Has that been part of your experience with your husband's Alzheimer's diagnosis?
Tanya
Yeah, I just feel like he's lost parts of his old self even though he's still here. You can't have conversations and share things like you used to. It's just changed the whole dynamic. Our relationship has just been changed from being partners, to the carer and the one being cared for.
Patty
Yeah, this is one of the most common pain points when your partner loses the capacity to have empathy and consideration for you as a partner and now relies on you to meet their needs. A friend of mine told me it started with his wife forgetting to ask how his day was, or how his doctor's appointment went, and then forgetting their anniversary and then asking where her dinner was when he came back from his mum's funeral. It's truly heartbreaking.
Tanya
Yeah, I, I agree with all these comments. It's so hard when you have an emotional need too and that's just completely gone. I miss the person that he used to be and the interest that he could show in each other. It just disappears. And then you experience this grief along the way in that, you watch somebody's personality and their independence just go. It fades over time. But the result in the end, it's just it's the loneliest kind of grief because other people don't understand it either. Unless you're in this position and you're caring for somebody similarly, you really can't understand it.
Patty
Yeah, it's beyond just missing that companionship because you mentioned for years there simply wasn't enough time or capacity to focus on your own mental health. Looking back now, how do you think that prolonged caring, affected you emotionally, maybe even mentally?
Tanya
Yeah, it's only looking back now that I can even see that. When you're in the midst of the situation and the depths of it, you don't recognise it. But looking back now, I lived in constant crisis mode for years. It was just so overwhelming that you just didn't stop. I would get so overwhelmed. But you couldn't stop. So now I find that I become overwhelmed emotionally, and I can't take as much as I used to. I don't deal with stress or conflict the way I once did. I used to be very good at handling that kind of thing, but now I just go to pieces.
Patty
What are some examples?
Tanya
I'm quite intuitive now to people's tones. If they get angry, I can't cope with any of that. I only have so much capacity for negativity. This is one of the reasons why I didn't want to show my face online with this podcast. During all this time too, my physical health started declining alongside my mental health.
Patty
What are some issues that you're traversing at the moment with your physical robustness?
Tanya
Since my dad's passing, I found out that I've got all these muscular skeletal. I can't even say the word, (both laugh) problems, you know, with my bones, muscle, goose, I still can't say it. I've got osteoporosis. I've got multi-level cervical degenerative disease, and so I only just found all these things out, you know, because I never had time to get scans or go doctors.
You know, my caring duties was so intense. I gotta say, though, since my mum died, I struggle with my memory. I used to remember everything before she passed away. But now I get this brain fog. And sometimes I'll repeat myself because I can't remember telling you the first time. I'm sure that I’ve repeated many of my stories to you as well Patty.
Patty
Well, luckily, they're interesting and I don't mind. (both laugh)
Tanya
I think I've ignored my own needs for so long that eventually everything just caught up with me.
Patty
Yeah, and it's very common. And I'm glad you said that because other people can hear and it’s probably their reality as well. Many carers are offered support services at times when they’re already stretched beyond capacity. What was your experience like trying to access counselling or respite or even practical supports?
Tanya
I gotta say, sometimes the support services would contact me when, I just couldn't engage with them either. I was too physically exhausted or mentally exhausted. Sometimes they would try and contact me when I just wasn't available. I might have one of my boys, as I called them, out at an appointment, or I just simply didn't have the time that you need to set aside for the appointments and, you know. Living where I do kind of in a remote area makes accessing the respite even harder. There's certainly a big difference between technically having the services exist, but another thing actually having them usable.
Patty
What do you mean by that?
Tanya
Well, in my area, for instance, there's, there's three aged care facilities, but only one of them offers temporary respite. The others don't even offer temporary respite. The one that does only offers a 2 to 3 week minimum. They can't offer beds for specific dates. So, you can't book your loved one in. so you can't have surgery, you can't have holidays scheduled.
You can only take the respite when it's offered. Basically, when a bed becomes available and that just prevents you from booking anything for any given period. So, you know, things like that happen. And so, you, you feel kind of abandoned by systems that are supposed to be there to help carers.
Patty
What would happen if there was a real emergency, like your appendix burst? God forbid!
Tanya
Well, I guess in that event there'd be a hospital type situation, and then I guess social workers would come into it. But you know, something unplanned like that. It would be taken out of my hands.
Patty
Yeah for sure. You've been very honest about how isolating caring can become, especially because you live in a regional area where there aren't as many services as there are for our metropolitan brothers and sisters, which I think is really, really unfair. Did you feel like you lost parts of yourself during those years?
Tanya
Oh yeah. I lost touch with a lot of my friends over that time.
Patty
And is it because they weren't carers themselves?
Tanya
Look, I think it's complex. I don't think they understand dementia. They're not carers. And you really have to have the headspace to be understanding. I think I didn't necessarily have that. And my world became very, very small, entirely based around my caring duties. I stopped doing the things that used to make me feel like me, and sometimes I forgot my identity. I forgot who I was outside of being a carer. It just consumed every part of me, that I disappeared. So that doesn't leave a space for friends. So yes, it becomes very, very isolating.
Patty
This highlights why, as carers, especially in remote regions, need community. They need support, because our friends are simply not trained for it. You've also spoken about how life started to change once support workers finally came into your life. Just quickly, what did that support make possible for you again?
Tanya
Well, for the first time in, I can’t remember how long, I could start finally doing something for myself. Taking little, snippets of time. I went to the movies, so I went to the cinema by myself, I got time to do a pottery class and an art class. They were just tiny moments.
Patty
But I bet that felt really decadent.
Tanya
Oh, absolutely. It just made me feel or remember who I used to be. It gave me just that little bit of mental and emotional breathing space that I so needed for so many years. It's these little things, you know, just having that having somebody my husband it's not a luxury for us carers. It's just so essential for us to survive our caring responsibilities.
Patty
If another carer listening to this feels exhausted, guilty or completely overwhelmed. What would you want them to know?
Tanya
I think that it doesn't take away from the love that you feel for your loved one, but I think you have to get to a point where you can admit that caring is part of your life, and it's hard. And burnout is real, but we as carers deserve to have support as well. I also think that we need to accept the help. It doesn't mean that we failed. Having small breaks have made such a difference to my own wellbeing and that you just can't continue caring for other people if you've neglected yourself.
Patty
When you look back on everything that you've survived, the grief, the caregiving, the exhaustion, what do you think has carried you through?
Tanya
Sadly, as I mentioned before, the friends that are left, are at capacity. They've got their own problems, which I know happens. But I would really recommend in saying all of that, to get in touch with services before you need them. You cannot rely on friends. And I did have small moments of connection and kindness, small ones, and that kept me going.
But as a sole carer, you need so much more, and you need consistent help. At one stage. Both my dad and my hubby were incontinent at the same time. They were peeing on the floor. They then I had two cats. They'd get stressed over the whole situation and they'd poo on the floor. Honestly, I tell you there was some days that all I did in a 24 hour period was clean up bodily fluids. There was poo, pee, vomit, blood. And on repeat! I didn't know which way was up, half the time.
Patty
Oh Tanya, and with nobody to share that responsibility with! (both laugh)
Tanya
But I've got to say that through it all, and now that I do have these, these snippets of respite, I became stronger than I ever imagined I could be. Advocacy means so much and it gives meaning to some of what I've experienced in the last few years. And finally, finally, I've had a chance to go to my GP, get a Mental Health Care Plan, and I've finally made myself an appointment to see a counsellor to talk about grief and carer burnout. And that is again, only possible now because I have the support workers that are coming in to give me a bit of breathing space. And that's why I'm telling my story. If it helps other carers feel less alone, then it's worth it. And I'm so grateful.
Patty
And I'm so grateful to you for sharing your story so openly, especially because having worked with you behind the scenes, I've seen firsthand how much you've carried while still somehow showing up with generosity, humour, creativity, and care for other people. I don't think our listeners necessarily realise just how much strength and time management it's taken for you to stay connected and collaborate with me to make this interview happen.
You’ve often squeezed things in early in the morning or late at night and around your caring responsibilities. And while I know things still aren't the best, I know they're better than they have been. And you've got a little more support and breathing room than you've had in the past. So, before we wrap up, I would love to give everyone a chance to get to know you outside of the caring role, your personality, and your favourites, and the fun side of Tanya. Are you ready for some Fast and Furious questions about you?
Tanya
Yeah sure!
Patty
So, if someone gave you a free plane ticket tomorrow, where are you going and why?
Tanya
Hawaii, Because there is so much to do there, or as little as you like.
Patty
Have you been before?
Tanya
Yes, I have. 3 times!
Patty
Oh, so I feel like I know what your answer to this next question is going to be. What's one thing you used to spend money on before caring took over your life?
Tanya
Travel. It has to be travel.
Patty
Yeah, I had a feeling! What is your most irrational pet peeve?
Tanya
I really hate impatient people. I don't know if that's irrational or not, but it really gets on my goat.
Patty
Question. Would you say that you've become more patient since becoming a carer? Or less so, since becoming a carer?
Tanya
Oh, absolutely. You have to. It's something you have to work on all the time. Otherwise, if you don't, there are consequences.
Patty
So you'd say you've become more patient?
Tanya
I think so.
Patty
Yeah. Okay. If you could have dinner with any celebrity, fictional character or even a public figure, dead or alive, who would it be and why?
Tanya
Princess Di, I think. She was a very complex person. There's a lot going on there. I think she'd be interesting.
Patty
She would be fascinating as well. And Tanya, thank you so much for sharing your story.
Tanya
Thank you so much for having me.
Patty
And that's a wrap for most folks. I hope you loved our chat with Tanya. And if there's someone you think could really benefit from hearing her story, please share this interview with them. If you happen to be more of a visual person, you can watch us on YouTube and we'd love it if you could help us out by liking, subscribing, and especially giving us a five star review too, because apparently that's what keeps the podcast universe turning.
Patty
Bye for now!
Tanya
Bye everyone!
Jonathan
Everything that MHCN does is guided by the lived experience of people with mental health concerns, and the families and carers who support their recovery. We're very grateful for their contribution to this podcast. To support, or find out more about MHCN, you can donate, join our free advocacy network and subscribe to our newsletter. All those links are in the show notes below.