Ep 1 - Carers - How To Keep Yourself Well

When looking after a loved one, looking after yourself is a priority too.
An interview with Sue Walton, a palliative care nurse specialist at Otago Community Hospice 

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Transcript

Ep 1: Carers - How to Keep Yourself Well

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks or months of life. 

Our episode today is Carers – How to Keep Yourself Well

Denise
Hi, I'm Denise van Aalst, a palliative care nurse at Otago Community Hospice. Today I'll be talking with Sue Walton, a palliative care nurse specialist at Otago Community Hospice, and we're going to be discussing Self Care: why it's so important. Hi Sue. 

Sue
Hi, Denise. 

Denise
Sue, you and I both feel really strongly about how important self care is. It's so essential for people. 

Sue
Absolutely. Yeah, it's very essential for health and wellbeing.

Denise
I think the problem that arises for many people, Sue, is it that they think ‘I'm looking after someone who's really ill, I'm looking after someone who's dying. I don't matter’. And in fact, you and I say they matter most of all.

Sue
Absolutely. Because if they get unwell or too tired, they can't keep caring.

Denise
And that's why we have a handout that's available on the website. In our handout, we talk about some of the different analogies around self care. And I think that the common one is that empty cup, that if you don't fill your own cup up, there's nothing left to pour out, to share with somebody else.

Sue
We often are charging up all our technological things in our lives, our phones and our laptops, and they all have batteries. And, you know, we don't let them run down, because actually, we really need them on a day to day basis. But I think that's a good example of just not letting our batteries run too low. But more importantly, learning how to, on a daily basis, re-charge them.

Denise 

I think that's a really good point, what you just said, we're using them on a day to day basis. And when you're caring for someone that is also a day to day basis, isn’t it? So if you're not going to charge up every day, if you're not going to do something to fill your own soul up, then you're going to run flat. And we've both seen situations where a family carer has just run flat and it doesn't go well.

Sue
Yeah, and I think everything sort of starts to get a bit harder or unclear or unravel a bit. Just because we can just get too tired, and everything seems to get a bit more difficult.

 Denise
And that's when tempers start to fray, when emotions run higher and something that might not normally bother you, can really bother you a lot when you're exhausted.

Sue
Absolutely.

Denise
It's thinking back to those days, of having those disturbed nights with a young baby. You know, it really doesn't take much to tip you over the edge and lose your rag – and over something really minor, but you're so exhausted, it becomes big. 

Sue
And on the flip side is, it can often take something really quite little, and if we're going to use children, it can even be a smile, or just a little bit of time out that can actually just completely rejig things and make it manageable again.

Denise
Yeah, that's exactly it, isn't it? It's not about having the day at the spa, because you know, that'd be lovely, but who's got the time or the money for that? It's about those little things and being mindful about those little things, isn’t it? What are some of your favourites, Sue?

Sue
Having a bit of time out on a day to day basis – that is easy to do. It doesn't have to take a whole lot of organising and I mean, for me, personally, it's just having a bit of time outside if I can, maybe take a cuppa or a drink out there, maybe just a wee walk around the garden. 

Denise
It's taking the time to just sit, as you say, maybe in the garden and enjoy that cup of tea – savour the moment, preferably leaving the phone inside just for a little while. 

Sue
And you're right, it's about moments. Getting big chunks of time can take a lot more effort to arrange and just seem that much harder. But I like the word ‘moments’. And that can just be easier to do, you know, put a favourite song on, maybe have a laugh. That sounds quirky, having a good laugh. But sort of generating that in yourself does actually help and it does relax us and boost our system. 

Denise
Yeah, that is great value. And laughing is one of those things where it really does apply – ‘fake it till you make it’ because you're just pretending to laugh. You know, very quickly that leads to real laughter. And I often recommend, go and look for those funny videos on YouTube. Maybe it's a favourite movie that you've always been able to sit and laugh at, and watch that together, generate the laughter, because you're right, laughing really does help to recharge the battery.

Sue
And actually taking a moment to even just, very quietly and gently, do a few deep breaths and to just pause – and you really can do that anywhere. It could be at the bench, it could be anywhere, but to consciously do that, then just relax our muscles in our shoulders and in our body. 

 Denise
You mentioned the garden before, Sue, and I think to me the garden’s kind of a really key one, around what works is different for different people. You know, for many people going out and spending 10 minutes, 30 minutes if you have it, in the garden, whether it's mowing the lawn, dead heading the roses, or just being in the garden is really therapeutic. I have to admit I'm not a gardener  – that’s a chore for me – but I'd love to go and be in the bush, so that would be my escape place, you know my resting place. But it is finding what's right for you, isn't it?

Sue
Definitely, yeah.

Denise
We've talked in the past Sue, about calling a friend and choosing those friends wisely.

Sue
Absolutely. Sometimes when things are really tough going or, for others, a real change point or crisis time in their lives and everything is impacted on, I've often thought we often only need one friend that we can ring in the middle of the night, if we're on our own, someone that will really understand if that call goes through. And invariably, you never use it, but to know that you could, is incredibly helpful. It's not like we need a lot of people in that space, but it is worth thinking about somebody perhaps, who could be a phone call away.

Denise 
And sometimes at this time, those friends may not be who you expect, because sometimes it might be a friend that's always been there for you is struggling at this point, because of perhaps their own losses in the past, not knowing what to say. And sometimes somebody you really think you’re going to lean on isn't there for you – but equally, there may be somebody that you didn't know so well and somehow they know just exactly what to do, what to say, right now – and again, perhaps because they've been through it. So it's looking a little wider as to who you can lean on.

Sue
You're right, it's also taking the time to think about the people who are close to you at this time, and just some of the new resources that might be available.

Denise
It applies also to visitors, doesn't it, where we talk about, you know, you have the right to say no, to visitors.

Sue
Absolutely.

Denise
People often find that really hard, but actually, some visitors fill us up, they come, we spend time with them, we feel better for it – and there's the ones that you see walking up the path and you think ‘Oh no’.

Sue
It can feel like something else to manage. But again, we can practise some simple things to help with that – being a wee bit more prepared around when people offer to help. Think about some things and even, if you can, write it down on a list and even just give them the list and say, ‘Hey, I'd really appreciate a hand with something off here. Is there anything that you'd be interested in helping out?’ But there’s reciprocity in that giving and taking – and being willing to accept help, I suppose is a starting point too, isn’t it?

 Denise
That's right, Sue. That's such a good point, that it is around accepting help. And that that's a gift you give when you allow someone to help you – they feel needed, they feel valued, they feel of use. So actually allowing someone to help you is giving a gift. And very often we find people are so much better at giving than receiving and now is the time to practise receiving.

 Sue
But also getting back to the visitors just for a moment too, it's okay to be clear with people around your home and the access to it, and it's okay to put a sign up around, in a quirky way, visiting hours or just communicating by putting something on the door about coming back later or ringing later – that you don't have to open the door to everybody. And by just taking a wee bit more control around that can actually help the overall situation because some people talk about home invasion. So many good people, so many good health professionals, equipment, everybody with good intentions, but actually sometimes it really blocks out the really special time for even family, or for close friends.

Denise
You're right Sue and I like your idea about the signs on the door. because, that's a really clear way to let people know before they even knock that, as you say, it might be visiting hours, it might be a rest time where you don't want people knocking. Or it might be that you allow people to visit, but there's a sign up saying visitors need only stay 10 minutes, and it just sets the scene. And I like to point out to people, if you've got a sign like that on your door, good friends will understand that. And if somebody sees that sign on the door, but they think they're more important than the sign, and they knock on the door anyway, they're also saying they’re more important than you and your loved one, and you have every right to just not let them in. 

Sue
Absolutely, because for some strange reason, often people who haven't been having regular contact, and may not have had contact for a very long time, seem to come out of the woodwork, so to speak. And I don't know, maybe sometimes they’ve just left it a bit late or energy needs to be protected around people trying to perhaps do what they need to do for themselves.

Denise
It comes back to the self care doesn't it, that actually this is caring, not only for yourself, but caring for your loved one. Limiting those visitors to the people who are of value who are supporting you, is good for both of you, so there's real value in that. 

Sue 
Yeah, looking after ourselves through tough times is absolutely vital, especially when you don't quite know how long it's going to be for. I often think it can be a bit like running a marathon – not that I do that on a regular basis, but, you know, any long distance trip or run needs food and drink stops along the way to make it sustainable. 

Denise
And I think, we've talked about the taking time to breathe, calling a friend. Music is a really good one and it might be that you make a playlist of music that just is your music, fills you up. It might be something really loud and rocky and dance around the house; it might be something quiet and classical, but finding the right music for you. 

 Sue
Yes, indeed. And that's also like, we've talked about actually taking a purposeful creative break, time out for some unstructured creative activity just to help de-stress and let your mind sort of wander a bit. I mean, there's lots of things around, but it's not so much focusing on the outcome, but just by having time out. And, you know, some people enjoy those adult colouring books or apps, just to doodle, play solitaire maybe – maybe a jigsaw, you know – painting. 

Denise
There's real value in just doing something creative, and you touched on that, Sue. It's not about the finished product – it's actually just about the doing, and there's a real freedom for the mind in letting it go and just do something creative. I can't draw at all, but doodling is still fun.

Sue
Yeah, absolutely. I'm with you.

Denise
And there's a reason those colouring books have become so popular and have continued to be popular really. And there are quite a lot of apps that you can get for your phone, whether it is colouring in or just some simple games to play. Mindfulness, there are some apps around that, things to listen to, some breathing exercises. There's lots of apps that you can easily find now for a variety of reasons and there's value in those too.

Sue
And I suppose part of that is sometimes slowing down, sitting down with some of them, and actually resting a bit. And whether you are listening to music or sitting down with a magazine, doing nothing if you can and just even lying down, just to let your body relax into a comfy chair or into your bed, just for a little while. It will be really beneficial. 

Denise
A soft comfy space in the sun, somewhere warm. And I think one of the other things with that is taking a moment. And it might be at the start of the day or the end of the day, and having just a few moments to think about some things that you're grateful for – because in the middle of all this turmoil, actually remembering some of the good things that are surrounding you can help to build you up.

Sue
And initially you think, ‘Oh what is there to be thankful for some days?’ When we’re really honest it's pretty tough going. But then you know, when you just again, slow down, and have that attitude of trying to think of something that is going okay, or that you're feeling good about, just does help. 

Denise
My favourite fill me up is my grandchildren giving me a hug, so it might just be those little things. But if we are thinking about it, it helps us to move that focus to what we have, rather than focusing on what we don't have. And let's change that focus to the joys that are still here.

Sue
Yeah, definitely Denise.

Denise
So I think one of the big things that we like to remember is that – and I'd say this to everyone who might be listening – that you have survived 100%, of what life has thrown at you so far. And you've learned from those tough times, and you've gained strengths from those times. And that's what's going to see you through now. So there's value in reflecting on what's helped you in the past, what have you got from the past? – and knowing that those strengths are still there for you to use again.

 Sue
Yeah, definitely.

Denise
Hey, thanks for joining us today Sue. it's been really good talking about self care with you. Certainly something really important and if we can just help other people understand that, then there’s value.

Sue
Self care is definitely a priority and not a luxury. And thanks for having this opportunity to talk to you. 

Denise
And thank you for joining us today. This podcast was brought to you by Otago Community Hospice, with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education