Ending Life Well. A podcast series for carers
Ending Life Well. A podcast series for carers
Ep 29 Self Care for Carers- What That Might Look Like
Carers are an amazing group of people who care for the family and friends very well, but they often fail to look after themselves. Yet the health and vitality of a person at the centre of a life event is really intrinsically linked to the health and vitality of the person that's caring for them. Listen for some ideas and resources to help keep yourself well while you care for someone else.
Featuring Trish Fleming and Maxine Chapman from Hospice West Auckland
Written resources to support this podcast can be found here
Find out more about Otago Community Hospice via our website, facebook or instagram
Email us: endinglifewell@otagohospice.co.nz
Episode 29 - Self Care for Carers -What That Might Look Like
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.
Today’s episode is Self Care for Carers – What That Might Look Like.
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator with Otago Community Hospice. Today, I'll be talking with Trish Fleming Clinical Community Liaison Manger and Counsellor Maxine Chapman who are both with West Auckland Hospice.
Denise van Aalst
We're here today to talk about how important it is that those who are caring for someone else, are also taking the time to look after themselves. So Trish and Maxine, what's been your experience with carers? Is this something you see that they need encouragement with?
Maxine Chapman
Absolutely, all the time.
Trish Fleming
Yeah, we just often see that carers are so focused on providing the care for their family member that their own needs just, come secondary, or lastly, even, and trying to encourage that is such an important thing to do.
Maxine Chapman
And to actually give them permission, I think, or give themselves permission that by taking some time and what that looks like, then you can actually be there, and continue to be there, in the way you want to be for your person. But if you keep on just only focusing on the person and missing your own signs and signals, that's when we’ll crash and burn.
Trish Fleming
And I think along with that permission goes that one of the hardest things for carers is, you know, to articulate how somebody can help, you know, because I think a lot of the time, you know, we're very good at saying, Is there anything I can do for you? Just let me know how I can help. And really, I mean, when Max and I are talking with carers, we'll often find that can be quite overwhelming for them because then it's like, oh, I need to organise.
Maxine Chapman
And the person who says, Oh, just let me know if you need a hand. Well, yeah, it's just another job that you're not going to do, is phone the person. So I think that supporters planner that they can access is a really great resource to have a snapshot that they can say to somebody actually, take a look at this list. And if you're up for anything you know, put your name beside it.
Denise van Aalst
So one of the other things the support planner can help with is things like meals being dropped off. Because, you know, we might have a wonderful number of bakers in the family, but we can only fit so much baking in the freezer, or eat so much baking, or, you know, we can only eat so many lasagnas in one week. And so using this planner can help people too, to sort of say, well, actually, these are the days that it would be helpful for me to have a meal dropped off. And then people can put their hand up to say, well, I'll drop one on Wednesday, and I'll drop one on Friday, so that we know just when a meal is going to come and when we need to be self-sufficient for a meal.
Maxine Chapman
That's really good Denise, because I just was connecting with a carer the other day, and she was feeling overwhelmed by the amount of food that kept on getting dropped off. And she said, I tried to tell people I don't need food, you know. And she didn't want to be rude, but it was like, I've got nowhere to put it. And then she was feeling terrible because it was going to waste. And so that is a really useful way of being able to say, Yeah, Wednesday or whatever day, or how much you actually need?
Trish Fleming
And specify your dietary requirements. Don't be afraid, you know, because, particularly, if it's people who don't know you as well, but, but who are well intentioned. As you said, Denise, people like to help. And you know, if they're not close family or close friends, it might be that by preparing kai is a way of being able to help without perhaps being too sort of closely affiliated or feeling that they may be being intrusive. And, yeah, but I would definitely appreciate it if you said ‘no more lasagna, Trish’.
Denise van Aalst
Or gluten free, or no eggs, at least then I know what's needed and what I can avoid.
Trish Fleming
Or you know, my son's staying, he's helping me with his father at the moment, my son's vegetarian, that would be helpful. I think there's a number of things in the support planner, you know, the prompts, like picking up the children, or perhaps getting some housework done, or does the gardening need doing. You know, that's something that can be really stressful, isn't it? Looking up to your beautiful garden, or your usually maintained lawn with that sense of, ‘oh, I can't look’.
Denise van Aalst
Or somebody coming to sit with your person so that you can get out and pull a few weeds, because that's therapeutic for you to be in the garden. So actually, allowing their friend to sit with them, or their grandson to be with them while I get out in the garden, you know that's actually going to fill my cup even more.
Trish Fleming
Yeah, yeah, agreed, especially if the sun is shining,
Trish Fleming
I think another thing that sometimes worries carers, is, you know, not wanting to put burden or responsibility onto others either, and also sometimes perhaps worried that maybe people don't really mean what they say when they say, you know, “if there's anything I can do, just let me know”. And, I think, trusting when you've got genuine relationships, and being able to actually lean into them.
Maxine Chapman
yeah, yeah, yeah. And reflect that back and say, Well, that sounds great. What are you up for? You know? What can you offer? And then you put it back to the person. And I think that can be really helpful, and particularly to establish some routine rather than having ad hoc kind of, you don't know when somebody's going to show up, but if you can get that roster in a way that you can know, okay, Trish is going to show up every Wednesday. She's got two hours available. And I can rely on that. And then it's also helpful for the person who's offered, because that's what they can offer, and they know, yep, two hours on a Wednesday. That's doable for me. So I think that can be really helpful to have, you know, a consistent routine of care.
Denise van Aalst
So a message if a friend or supporter was listening to this, would be, don't be broad. Actually, say, specifically, could I do this for you? Would that be helpful? Or could I do this or that. If I was to come and stay at the house, would that enable you to do something? So offering something concrete, is more useful, isn't it, than that broad, very well meaning ‘Let me know what I can do? Because I agree that's just an overwhelming decision.
Maxine Chapman
Absolutely and then also for the person in the caring role that their focus is on the person they're looking after, but who does all those other jobs? And actually, people are quite happy to be the other rather than the carer, and so they're the ones “Yeah, look, I can mow your lawn, or I can come and, clean your bathrooms, or, you know, pick the kids up” or whatever it might be, as long as it's not hands on for the caring. And I think, as Trish before it, people find it very hard to say thank you or ask for that help, because they think, ‘but, you know, I'm able. I can do the vacuuming’. But yes, yes, you can, and it's another job, and it takes energy. So if somebody else offers it's being able to say thank you, because it takes one other thing off you, so that you can keep on putting your focus on the person in the way that you want to.
Trish Fleming
And I think that's a really important point that you've raised Max that you know the normalcy of life is mostly still going on. You know that there's the sick person and I think particularly when we think about caring journeys that can be pretty long, you know, but by the time someone comes to palliative care services, we're generally talking about coming to the end of the journey, but not factoring in, or less aware in the palliative care space, of how long that person has been providing care over a sustained period of time and also meeting the needs of others. Because, we often see, particularly if they're younger people who are unwell, that there are dependent children, or there are other family members, or perhaps dependent parents as well as an unwell spouse, and so, you know, a lot of commitments and a lot of directions that that all need to take over. And I think you know, Maxine’s hit the nail on the head, that actually, if you could step into that space and support me, then it permits me, or frees me up, to do more of this very special thing that I've committed to doing.
Denise van Aalst
Because there is a real fatigue, isn't there? There's a physical fatigue, you know, perhaps having disturbed sleep, we’re perhaps not eating that well, we aren't able to exercise the way we've normally done. But there is also the mental fatigue. And you know, you touched on the fact that we might also be looking after children or parents. Some carers are still working, you know, at least part time. And then on top of that, there's the, oh, I've got to get a new prescription for this or and I've got to, oh, when's that appointment that we have to reach? So there's all those other things that they're going on. And, you know, this is that other thing. If people don't take the time to rest and recover from that, they will burn out.
Trish Fleming
I think, you know, sometimes it can be quite trite of us as professionals to say, you know, you've really got to look after yourself. So what does that mean?
Maxine Chapman
Yeah. And I hear that a lot. It's like, yeah, right, almost, you know, it's like, where? And I think that's where dialing it right back and coming to, just tuning in, like being aware of how am I being in what I'm doing, rather than just doing what I do, and particularly that there's so many things you're juggling, and you get into your head, and it can feel overwhelming, because you've got all the these to do things, but it's kind of like slowing back and detaching from that. I like to call it the thought train, and that's an endless ride to nowhere, and there's a lot of emotion attached to those trains of thought, but we can end up being at home feeling quite overwhelmed when we're following those thought trains and feeling overloaded. So I think just being able to take that moment of pause to detach from that for a moment and think ‘Okay, I could take five minutes, five minutes to switch off from the mental overload and look at the blue sky, or look at the rain on the windows and have my cup of tea’. And that, if we take those small bits of time where we can, how we can, is so important, you know. On a daily basis, actually, some ways, somehow. So it's not the big ‘oh gosh. I used to go to the gym three days a week, and now I can't’, you know, it's too much so, and that feels overwhelming, but I can just put my shoes on and step out the door and feel the blast of whatever the weather's doing, and maybe that's it, and then I get back inside, but I've taken that moment.
Trish Fleming
And that's a really interesting point that you've raised about the ‘What can I?’ rather than ‘What can I no longer?’ Because carers do talk with the utmost integrity, but often coming from a place of feeling guilty about it, talking about resentment of the caring role, particularly when it's over an extended and protracted period of time. It may have impacted their life significantly, so that reframe about, not so much what I can't do, it's what can I do? What can I do? And what are the enablers for that?
Maxine Chapman
And also on that note, I think paying attention to those feelings. You know, when we're feeling a bit resentful and we you know our sense of humor is gone, or we feel a bit snappy and easily emotional, I say thank you to those feelings. And actually, what that's telling me is I am giving too much out, and I have been doing that, and I'm part of the human race too, and I can't keep on giving away what I need. It's not bad. It's like, ah, actually, that's where I say, “Let's tune in and pay attention. What's my body telling me?” and when I'm getting those feelings, listening to that and thinking there's nothing wrong. That's telling me, hey, you know, have I stopped for a moment to actually nurture my body with enough rest or, you know, hydration, or just those things that we know help our bodies going, and sometimes we haven't. So that's where the resentment comes from, and those kind of feelings. And so if we're aware of that, then it's like, okay, how can I take one step, in a small way to put something back in.
Denise van Aalst
You touched before Maxine on, you know, just stepping outside, you know, briefly and sometimes it is just micro moments of peace and tranquility, a few deep breaths, a little bit of time like that. But if we could do that three times a day, those micro moments do add up.
Maxine Chapman
Absolutely and it's taking time for them and that's the key, because what gets bumped, it's those moments. It's those micro moments of things that we can do for ourselves that get bumped when we've got to go and pick up the prescription, or when we've got to go and, you know, give our person their meds, or we've got to go and do this, it's like, oh okay, you know. So that's where it's like, keep it small step outside. You know, don't make it too big, but if you keep on taking those moments on a daily basis, then hopefully we can find some balance.
Denise van Aalst
And Trish, you mentioned before, and I thought this was such a good point, that as health professionals, it can become almost a trite “I hope you're still practicing self care,” you know. And actually, it becomes almost another chore, doesn't it, that I have to add in. Where am I going to fit that in? And it's so individual. I mean, I can't give somebody a book and say, Here's your list of self care. Go and do that because it's really individual as to what self care looks like. So Trish, what would be your top three things that you would either do for yourself or you would recommend to somebody for self care?
Trish Fleming
Just as Maxine said, I'd need to step out the front door. You know, my thing is, I love to go for a kind of great, big, long Bush walk, but if I couldn't do that, making sure I got outside the front door and walked past the letter box and had a look around the garden. You know those things? Looked at the view. And I think the other, the other thing for me would be giving myself permission to articulate the things on a practical day to day basis that would support me. And then I'm picturing that then, you know, if somebody was doing the washing or sorting something, maybe I could walk further than the front gate and the letter box. A little lady that Max and I have both come across talked about finding the family member with some strengths. You know, the particular strengths in your sort of support network? And she talked about how wonderfully her granddaughter, who lived out of town, had coordinated the family to be a support roster. And she said that she'd really learnt something from that. She'd learnt something particularly about her granddaughter, that had really quite buoyed her, but also she'd learned about herself that it didn't come naturally to her to let people give her that sort of help and support.
Denise van Aalst
So Maxine, what would be your top three?
Maxine Chapman
Oh my top three. Well, I, you know, life's a moving process, and I think this is a moving process, and life has changed. So I think validating that life's not the same is a huge thing. And actually validating that people are going through a grieving process when they are in a caring role, because it's change, and there's so much change. So I think for me to know that if I'm in that situation, it would be not looking too far ahead and dialing it right back to ‘Okay, today's today. What has to be done today, you know? What am I up for today? And how would I be supported today?’ You know. And I think that would be how I would imagine I'd like to approach something. And then, yeah, in a simple way, what are the things? So walking out the front door, or just taking five minutes around the block, feel my body moving, you know? Because it's actually about working some of that emotional stress through as well, without it having to be about the words. But you know that movement in my body, doing some yoga stretches, you know, and some breath work, doesn't have to be big, you know, but starting my day five minutes before I'm on, taking that time to do that is going to set me up for I've got this.
Denise van Aalst
Well, we talked about fatigue before. You know, that physical fatigue needs physical rest, but that mental fatigue actually, that often needs activity and it might just be walking out to the end of the street and back, the fresh air, even if it's raining. It's lovely to walk in the rain sometimes, but just being out in clean, fresh air and a little bit of physical activity can do quite a lot to restore our souls, can't it?
Maxine Chapman
Absolutely.
Trish Fleming
And I also think there's wonderful resources online, if people are online users, aren't there? Such as the Hospice New Zealand carers guide, and then the Carers New Zealand suggestions. But just also being able to kind of go into a different space. Sometimes you can't get outside the four walls, but how do I teleport myself into just something that takes me outside of this reality, to help care for the fatigue, I guess, and help care for any resentment that might be “I can't do that”.
Denise van Aalst
You mentioned Carers New Zealand, they've got a wonderful website. Maxine, you also mentioned before, the support planner that we have all developed, and that's another wonderful resource that will be available. We'll have links to that at the end of the podcast, and that's a planner that anybody can download as either a document they can print it and write on it, or they can share it via Google Docs and complete that. So that support planner, Trish, it might have been you that mentioned the idea of putting suggestions out there of what it is that we would like, because it isn't easy to ask for help, is it? and this is a way of just saying, well, these are the things that would help me. What is it you feel able to do?
Trish Fleming
That's exactly right. And the support planner is just wonderful in that it's got those prompts. You know, do you need someone to get some groceries? Do you need some washing done? Do the children or grandchildren need picking up? Do medications need to be dropped off? Does, etc, etc. And it gets you thinking, Oh, it's not on the list, but actually, it would be helpful if you know, and it's an easier way, I think, having that visual kind of plan, something that can be shared around the family, the whanau, the visitors. It's like, you know, you've said, Is there something I can do? Well, here's the list of to do's, and it enables people to play to their own strengths too.
Maxine Chapman
Absolutely. And it helps get it out of your head. And if you've put it on that bit of paper, and that list can get added to, ‘ oh yes, I hadn't thought about that’ and put it on there. So then you don't have to get caught up in those thought trains that we talked about and go round in circles with the’ to do’ lists. It's there, it's a visual, as Trish said. And then when people do visit, or they come over, or whatever and ask that question, it's like, actually, there it is on the on the table. Take a look if there's anything you want to, you know, put your name against much appreciated.
Trish Fleming
I think carers also have a difficulty when it comes to formal health and community services in terms of articulating and potentially accepting the help. ‘Well, actually, it would be great if somebody helped me to bathe my loved one’ or ‘provided some support with the home environment’. And I think a few things happen in that space that sometimes people perceive it might be a criticism of their care of that person, that an outside health professional thinks you need help, but they also may think, they may be worried that health professionals are going to take over. There could be concerns about having outside people in the home. And you know, I think that's a big, a big aspect for our role in in the work that we do, is to try to understand what those barriers are to accepting formal support services.
Denise van Aalst
One that I've struck is where the patient says, Oh, I don't need any help with my you know, with bathing, my wife will help me with that. And actually, the wife is getting exhausted. So it's encouraging people again that it's okay to say “I'm tired. I need someone else to do that, while I do this”. And
if the carer thinks I don't want to be doing this task, or I'm too tired to be doing it, if they feel unable to say that themselves, then having a conversation with a health professional, so that they can help have that conversation on their behalf. Certainly at hospices, we're more than willing to help navigate those conversations. And often, when it's pointed out to the patient that ‘actually your wife's really tired and we need to look after her’, they'll very often say, ‘Oh, you're absolutely right. I didn't think of that’.
Trish Fleming
GPs are very good at supporting, yes, family carers with that. But it also raises that thought that it is really important that our family carers keep up with their own health checks and are supported to do so.
Maxine Chapman
And it's that role change. It's not just a partner doing the personal cares for the person. It's when maybe there's the children or the adult children and they don't want to be, or the parent doesn't want their child to be doing that for them. So it can work the other way too. But who does do that? So I think there's a very real safety aspect to it. If you know it is the woman who is the carer, and you've got a big, strong male that they're physically just aren't able to support, and they can actually do themselves damage. And it's stressful. You're in a stress situation because we're not trained professionals, as you know, the family member, and yet we're often put into a position where we're doing those roles. So, yeah, how we can be alongside as professionals to help navigate those times, I think is really important.
Denise van Aalst
A phrase that I had heard is about the cost to family and friends, so not the financial cost, but the cost, perhaps to their own health. And each person has to decide for themselves what they're able to pay. So I can't decide for my daughter how much she can do for me, she has to decide, but we're aware that each decision we make can impact on someone else, but you know, we can only make a decision for ourself, what it is we're able to do.
Trish Fleming
And that plays into a conversation I had with a patient the other day, who said that she was really quite surprised when the wider family was asked who would like to be part of this space. She really hadn't quite realised that actually there were other people who actually were happy to be involved in aspects of her care that she would never have thought to assume or ask. And you know, I'm talking with a residential care provider recently about that very situation too Denise, and suggesting to the care staff that they asked the family, ‘to what extent would you like to be involved in the hands on care of your nana as she's deteriorating’, and the answers were Yeah. And I thought, well, if you don't ask, people don't know that they also have that opportunity in some situations.
Denise van Aalst
And how lovely to put it out to the wider family like that, because very often they would love to be involved, but they don't want to intrude, or they’ve perhaps felt kept at arm's length, maybe again, with the best of intentions to protect them, but actually, they would love to contribute. Because we all like to give things to others. We're much better, generally speaking, at giving than we are at receiving, aren't we, and it's easier to offer to do something for someone else, but actually, when we allow someone to do something for us, we are giving them a gift.
Trish Fleming
Particularly when it's precious moments of time that's not ad infinitum anymore. That also reminds me of a conversation. There was a piece of research done in West Auckland, quite a number of years ago by a GP that that we worked with. He did a qualitative piece of research with some family carers, women, and several of the young women had said ‘I did not want to do that care for my mother, my husband, my brother’, whomever it was, and/or ‘I did not want to do it’ and/or ‘I did not think I could do it’, but got through the journey and were actually empowered by that, by their own skills and abilities and their ability to make the commitment.
Denise van Aalst
And it can be empowering and you're right, we don't know what we're capable of until we're faced with it, do we?
Maxine Chapman
And sharing the load by allowing other people to step in, you actually give somebody the opportunity to connect in relationship in a different way that they haven't been allowed to because the partner or the husband or the wife have been there, and it's they haven't had an opportunity to be able to step into an aspect of that role. And if they're able to, something else can be created, and it can be beautiful in relationships.
Trish Fleming
One thing I think that goes with that is, because this is me, I have to accept that somebody might do the same thing in a different way.
Maxine Chapman
That's a biggie Trish, and it's okay that we don't hang the washing out like this, because my mother showed me like this. If the washing is going to get dry, you do you with the washing. And so, exactly, that's a biggie, yeah yeah.
Denise van Aalst
I think that's a really good point that we do have to allow that people will do things in their own way, but as long as it's done, and in the meantime, I got to go for my walk outside, or I got to go and have a coffee with somebody. Because one of the other values that I've seen is that when we perhaps allow someone to sit with our family member while I go out for a while, actually, that's so good for them. Maybe I'm caring for my husband, and I've been adamant that I'm going to do it all, but finally I get convinced to go out, and I go out with my daughter for a coffee, and his best mate comes and spends an hour with him in that time, and they've got a great time together, as they used to do in the past, but that hasn't been able to happen because I've been there doing all the caring. So actually, when we do step aside and allow someone else to spend that time with them, there's such a value for all of those people as well.
Trish Fleming
And when you come back from having had your coffee, you've got something new to talk about.
Maxine Chapman
As does he about the visit from his mate.
Denise van Aalst
I think one of you used the term about gatekeeping, and it's very easy to do that, with the best of intentions, but actually it ends up causing, you know, people can feel shut out when you're just meaning you don't want to be a burden, but they didn't see it as a burden. And instead, they're feeling that they can't contribute when they would very much like to. And that's not to place yet another burden on carers. That's to say it's okay to allow others to help.
Maxine Chapman
And I think the importance of keeping the communication channels open, because often we can misconstrue or run a storyline about what we think somebody is or isn't doing, but we haven't actually communicated in person. And I think a lot of miscommunications go on, and that can add to a lot of stress. So I think, you know, it is being able to communicate well within a family system, or what the networks are, and have a spokesperson, but have it relayed in a way that it's updated regularly, or you know that there is good communication, I think is also a key.
Denise van Aalst
And that's a role that might well be picked up by someone else, isn't it? That if you as a carer are just feeling a little bit overwhelmed and you don't want to deal with difficult Aunt Sally, actually, there can be a person who can help deal with those communications on your behalf. And that could be a really useful thing that somebody could step up and do and manage those conversations.
Maxine Chapman
How do we update the people who are connected and want to know, but it's another, ‘oh, I've got to answer those emails, and I've got to get in touch with Aunt Sally’. And you decide, okay, I'll use this medium and I get it posted there once or something. And that's the update. Rather than trying to make these individual phone calls to certain family members.
Trish Fleming
And that was what the lady shared with me the other day. Her granddaughter had set up a WhatsApp family and friends group chat, and the granddaughter takes responsibility to post in the chat any little pictures or any updates, or ‘we're not contactable right now because Dad's had more chemotherapy and they need to rest’. So she said it was wonderful.
Maxine Chapman
Exactly and so there might be a few different groups, WhatsApp groups, or however you decide. And it's like, okay, so for your sports crowd that are all interested, then there's you know, that group, and then there's the family group. So you can have a few different groups, but one person that you speak to who then disseminates the information to the wider people in that group.
Denise van Aalst
And that's a lovely job, that somebody who is feeling a bit useless because they live in the other half of the country that’s something, ‘hey, I can put my hand up. You let me know what you want, and I'll share it to all the right people on your behalf’. And especially if somebody's not especially tech savvy, then there's bound to be a younger person in the family who is, who will say, ‘Oh, I'll do that’. And this is something, oh, I'm really useful, because I have this thing I can do. And don't we all want to feel useful and valued?
Maxine Chapman
Finding the best way for people to contribute hey? And then I think another thing that's just come to mind talking about that, how do we manage people? Sometimes people want to be there, and it's too much. And then they call over, and then they don't know when to leave, you know, and then you're holding space, you you're the one walking to go and get the cup of tea for the person who's visited. And then they sit and they don't read the room, and they overstay their welcome. So, you know, how do you manage that? And I think it can be really hard for people sometimes to tell somebody to leave, but something that we've encouraged people to do. I remember one family member, they had a sandwich board out the front and quite clearly written, 10 minute visits - great that you've come over 10 minutes only, please, or something like that, and you post it on the front door before they walk in.
Denise van Aalst
We've actually got door signs available on our website that people can download with exactly that. So there's three different ones, one that says Visiting Hours, so they want the people to visit just in a certain time. Or a Rest Time, so that there's a certain couple of hours a day where people aren't going to visit, and they can decide the times themselves. And the third option is, hey, it's lovely to see you, but please only stay… and then there's a space for them to decide whether that's five minutes or 35 minutes, they can put the time in. And we encourage people to put that on the door so that they can say ‘we're just limiting visitors to half an hour’. And when I give those signs to people, I say to them and just say, hospice said we need to use this because Jim's getting a bit tired. You don't even have to take any responsibility for it.
Trish Fleming
I was also thinking of a lady who talked the other day about how helpful she found her daughter in law at managing the health professionals and community professionals. The lady talked about she was confused was that nurse, a hospice nurse, a district nurse, a practice nurse? Was that the social worker who came? Or was that another nurse? Who was doing what, and who was getting back to her about what and who was coming next? And found it overwhelming when family would come in at the end of the day and say, ‘so who came to see dad today Mum, when are they coming back? What did they say?’ So keeping some kind of a record and track of that, and getting some clarity, organising those health professionals, really, and those visitors into the home to also not fall over each other coming into the home and you know, do that in a way that's really sensitive and coordinated.
Maxine Chapman
And that's a biggie, and that the health professionals take the responsibility for that, so it's is we've got a communication book, which is just one of those exercise books. And we leave it with the family when they come on to service, and we encourage them to have it out, on the main table. And when any of us come, it's for us to take responsibility for say, oh, Maxine counselor at hospice. It's 23rd of July, visited and maybe, if I've made another time to come, I write the date of my next visit, and it's in one place. And then the district nurse comes and she might be there. And so she writes her name and role and organisation, and if she's making another time, the next appointment. So, you know, I think that can be really helpful. And then the family come over, ‘oh what happened today, Mum?’ ‘Oh it's in the book’. And it's useful for other professionals to come along then and and see ‘oh, Sandra, the district nurse, was here yesterday’. So, you know, I think that can also be helpful.
Denise van Aalst
I've had somebody who had a book just like that. And she just kept it by the front door. And everybody who came, whether they were a health professional or whether they were just a visitor, was asked to put their name, the date, the time, in there, and any other details like you've said, so that she didn't have to remember. Because it was always in the book.
Trish Fleming
I had one family say to me, it had become that they were on their third exercise book by the time their Nan died. But they actually found it quite a treasured reminder of the journey time, of who was there, who helped, who came in, who did what, and found it quite reflective.
Maxine Chapman
And I think, very helpful with the medical language and the medications, trying to, you know, even pronounce some of the medication names, if the nurse, when they visited, just does a little ‘okay, this is what you're taking and when to take it’. That can be really helpful for people, because it's there. It's like, they don't even have to try and remember how to pronounce that medication.
Trish Fleming
Or when the family member says ‘What does he have for that, Mum?’ and you're like, ‘I don't know’.
Maxine Chapman
It does sound trite when you say, don't forget to look after yourselves. And what does that look like? So I think keeping it simple, in some way on a daily basis, being able to take those bits of time, but that's the key. I think you've got to take the time, because self care is the thing that gets bumped. So keep it small, but take those micro moments, like what you said Denise, is so important. And then if you take those micro moments in a daily way, somehow, be it just sitting switched off from the to do list with your cup of coffee or your cup of tea without any distractions. That's helpful. You know that can be restorative for those moments. And I think if you keep taking those little bits of times, then it help. Not just keep on pushing through, pushing through till we're not pushing through anymore. And that's where the collapse comes from.
Trish Fleming
And I think that initial being able to accept help, even if it's the support with the micro moment, I'd like to believe it does become easier for people then to go on to accept more help and get used to that, for the person and the unwell person too, to get used to other people being around.
Maxine Chapman
We talked about the communication and realising that everybody is dealing with things in their own way and own time, and it will be different. So how can we be in this together? And I think that's a biggie for when the patient is navigating their health journey, and the family members are also, and I think sometimes that gets missed. It's like, ‘but I'm the one who's dying, and yet it's like, Yep, the family might not personally have the health diagnosis in their body, but they are also navigating the changes together. So I think looking at it as a collective of how can we be in this together, and what's important? And I think to share it so that it isn't just patient focused without acknowledgement of what it takes to be there.
Denise van Aalst
I do like to remind people that it is so important that they still find joy in life. That they don't allow themselves to be overwhelmed by the challenges and the chores and sometimes we have to consciously do that, make ourselves laugh, make ourselves find something funny that we can laugh at, because even forced laughter becomes genuine laughter after a while, but the dopamine hit from actually still finding laughter and joy does so much to help restore us.
Maxine Chapman
Oh so important,
Trish Fleming
And somebody said the other day, oh, you know, it must be very sad working at hospice. I thought we've just had a hilarious breakfast you know. And supporting families to have that, as you say, that joy and that laughter and that normalcy of the relationship,
Maxine Chapman
And I think yes, the amount of times that we hear peals of laughter in the building, and it's so fantastic. So it isn't all about the sadness, yeah, I think it's a very real time in people's lives. And they can find joy as well
Denise van Aalst
Well, Maxine and Trish, thank you both very much for your time today. We're all so much in agreement of how important it is that people do look after themselves, and it's nice to be able to have that conversation and share where we see that value sitting. So thank you both very much for your time.
Maxine Chapman
Thank you.
Trish Fleming
Thanks for having us. Denise, it's always a pleasure to talk to you.
Denise van Aalst
And thank you listeners for joining us today. This podcast was brought to you by Otago Community Hospice with support from Hospice New Zealand.
The Support Planner that was discussed today can be found along with other helpful resources at otagohospice.co.nz/education
Another New Zealand based website that we talked about is carers.net.nz and this place has many resources for carers.
If you found this discussion helpful check out our other episodes of Ending Life Well a podcast series for carers.
We began this series with an episode on self-care and we wrap it up now with this latest episode on self-care. The many topics in between have been designed to give you information to support you and your family on this journey. Just as it takes a village to raise a child, surround yourself now with a village to support you through this time. Reach out to your GP, your practice nurse, your local hospice, your family and friends, and find the help you need.
If you have any feedback or suggestions for further episodes we would love to hear from you at endinglifewell@otagohospice.co.nz