Ep 5 - Carer & Patient Fatigue

This is a very tiring journey – learn about why you as a carer are feeling so tired, and how you can manage your and your patient’s fatigue.
An interview with with Christine Pacey, an occupational therapist and palliative care team leader in Central Otago. 

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Transcript

Ep 5: Carer and Patient Fatigue

 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 “Managing Fatigue for Families and Carers”.

Denise
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. And today I'll be talking with Christine Pacey. Christine is an occupational therapist and palliative care team leader in Central Otago. Hi, Christine.

Christine
Hi Denise, nice to see you.

Denise
Christine. We're going to talk about fatigue, and how that impacts both on carers and for the patients. It's a really big issue for people who are looking at end of life, isn't it?

Christine
It certainly is. And you know, it's one that quite often people ignore or don't talk about. And I think it's important that we highlight fatigue for carers and family members, because when we talk about fatigue, it's that persistent tiredness.  I liken it to sometimes when you've got off a long haul flight, and you get that jet lag and you hit the wall and you just can't go on any further. You're just so tired that you have to have a sleep or a rest. We have carers that will say they go to bed, they have a sleep, but they get up and they're still tired. So it's that kind of fatigue.

Denise
Yeah. So this isn't ‘Oh, I’ve been for a run and I'm feeling a bit tired’. This is exhaustion, isn't it? This is ‘I'm hitting the wall’. 

Christine
And the thing is, they can't ignore it. They have to deal with it, because it just escalates and they'll get more and more tired, they'll get burnt out. And then you know, if we don't have our carers caring for our patients, then they will not be able to do it.

Denise
Everything falls apart, doesn’t it?

Christine
Yeah. If we're looking at our carers, it's really important that they prioritise some self-care.  They're giving a lot of their time and energy to their loved one who's not well, and they probably have other things going on in the background that they're also giving energy to. But they have to give permission to themselves to actually have some self-care and time. 

Denise
We can't really drum that in strongly enough, can we? They have to look after themselves if they want to look after someone else.

Christine
And if we're tired, we get really irritable, we can't help it. We just do it. And we might start snapping or we're on a bit of a short fuse – and they're just tired, they need time out. 

There's lots of things they can do to help themselves. So they can have someone come in and look after the loved one and actually get out of the house, have some fresh air. And managing fatigue, while sleep is good, relaxation is also good - good for the soul - getting out for a walk, looking after yourself doing something that you enjoy, something that brings a bit of laughter, or meeting a friend for a coffee, just something that gives your brain some time out.

Denise
So that's right, isn't it? This fatigue isn't just around not enough sleep. It's actually around the physical exhaustion from being physically on the go, but it's also around a mental exhaustion.

Christine
Yes, that's right. Quite often you don't realize that's happening because it kind of sneaks up on you. So it's really listening to your body's tell-tale signs. So either you're thinking to yourself, ‘I feel so tired’, or you're starting to get irritable, or people are starting to annoy you or you're getting a bit niggled about the slightest thing, which you wouldn't normally. So it's just those sort of signs you're looking for so that you try and do something about it.

Denise
That's some good suggestions that you've had, like getting out, getting some fresh air, a change of scenery. That doesn't need to be great big blocks of time – they're great – but even little bits of a regular walk outside, walk the dog, walk yourself, time with others. 

Christine
And, you know, for our patients, it is a wee bit different for them, because they're fighting a disease or ill health, chronic health problem, so their body is working doubly hard. And so for them, while the fatigue feeling is the same – you know, you hit the wall where you can't go on – the reasons for their fatigue would be slightly different. Their body's fighting the disease, or they might be taking medications that have side effects of tiredness, they might be on treatment that makes the body very tired. So there's lots of things going on for them too. And it's important that they also have some time to have a sleep, maybe in the day – nothing longer than an hour, because if you sleep longer than an hour, you go into a deeper sleep that's harder to come out off. And it's that deeper sleep, that would give you trouble having sleep at night.

Denise
That early afternoon is a good time for that, isn't it? Like before three o'clock, it's a natural lull in our circadian rhythm, so getting that rest then, gives people the energy to perhaps enjoy their evening more.

Christine
It's a bit like having your cell phone and the battery's going down and you never quite charge it fully. You just stick it on for five minutes, and you get another few minutes of time – but actually, it just needs the full charge. But for someone who's not well, there could be a number of reasons like if they're fighting a symptom, if they've got an unmanaged symptom, like pain or nausea, then it's important they talk to someone to get that symptom managed, because having pain for instance, is exhausting. If they can get that pain well managed, then they're not having to fight that all the time.

 Denise
That's a really good point, Christine, isn't it, because somebody who's really unwell may not be physically doing much, but they're physically exhausted because their body is still working hard. And if they're now also fighting pain constantly, that will drag them down. 

Christine
Quite often people ignore it, don't they? And they don't seek assistance. They just put up with things. But I suppose in palliative care we're trying to tell people ‘Don't put up with it – say something.’

Denise
Yeah, because it's part of that bigger picture. ‘Let's not be tough guys, and I can cope with the pain.’ Actually, your quality of life is going to be better, you're going to have more energy, if you let us help you deal with these symptoms.

Christine
And for our patients, we're always saying to them, ‘Think about pacing your day and think about what are the things you want to have the energy for today’. So if they know for instance, having a shower in the morning tires them out, then they could have wee rest after that shower or whatever it is they're doing. If they know they're going say, out for afternoon tea or something with a family member or something they're looking forward to, they could have a wee rest before they go and do that. 

You know I had a lady – they always grew their own veggies – so for her, it was really important to be able to split the peas. And that's fine, but standing for her was really exhausting. She couldn't do that. So we were saying to her ‘Look, get set up at the dining room table or the bench or whatever. You've got a seat and you can still do that task, but then your body's not having to make your stand at the same time which is tiring.’  So it's looking at finding different ways to do things so that you can still feel you're achieving something in a day. It's just human nature, we like to feel useful. 

Denise
Yes. 

Christine
But if we're trying to manage fatigue at the same time, we need to think about, is there another way we can do it? Or can we do just a little bit of it, have a rest and then go back and do a little bit later?

Denise
And I like what you said before about prioritising. What are the things that are important? So you know for this lady, okay, ‘I don't need to pick the peas, someone can pick them. But I want to shell them. And as you say, I can sit down and do that.’ So what are the key parts? What are the really important things that I want to use my energy for?

Christine
And everybody's different. People need to think about what they want to be able to do, and do that. You know I always say to people, we're our own worst critics, because we tend to feel guilty, if we don't achieve something. So it's actually okay to give yourself permission to have a rest, or do it in a different way.

Denise
And actually, it's not even just the giving yourself permission, is it? We're saying, actually, ‘This is your task, your job is to rest, because this is what your body needs from you.’ 

 Christine
That's right. Everybody's got different reasons for the fatigue – you know, someone with, say, a neurological condition, then rest probably means total rest, like a sleep, in quiet surroundings, TV off, because if the TV's on or the radio’s on, your brain's still working. Sometimes people just need quiet time. For other people, lying back in the chair or the sofa or something is enough for them. So it's about people finding out what works best for their situation.

Denise
That's really good. It's that individual recognition of ‘What do I need? What does my body, my mind need for me to really rest?’

Christine
And for other people just some relaxation techniques can help. There's lots of podcasts nowadays where you could listen to relaxation techniques, but quite often, some nice deep breathing, or mindfulness. Some people like meditation and people can either ask their care coordinators, and they'll help them find some information and styles for them to try, or they can look at podcasts or YouTube and give it a try, because sometimes that's just what people need.

And for those people who are used to being active, perhaps seeking a task to do such as meditation is almost an active way of relaxing that they can feel they're still doing something constructive. 

Christine
I think in human nature, we like to be busy, so it's really hard to give ourselves permission to not. One of the other things that can be a bit of a problem for people is the number of visitors they have and they feel terribly guilty to say, ‘No, don't come’. So we always tell people it's okay to put a sign on the door. You can have a period in the day where you're going for a rest and make it between one and two or whatever you decide – and that's okay. And people are usually very respectful of that.

Denise
I always think those who aren’t respectful of that aren't actually there for the right reasons. They're not there for you – they're there for themselves. So if they're going to disrespect your sign, you can disrespect them and not answer the door. 

Christine
They can ask people to ring before visiting so that they can slot a time in, and slotting a time in means you don't have multiple people at the one time as well. Having lots of people around you can be pretty exhausting. You might want to see them but you just need to think about how you schedule it all in. The other thing we usually advise people is, it's okay to say to people, just stay for a short time.

Denise
And actually, a door sign that says, ‘Please only stay 10 minutes, 15 minutes’ can be helpful for visitors, because sometimes people come but then they don't quite know how to leave and ‘Should I go or shouldn't I go?’ If they saw the sign on the door, they think, ‘Okay, I know how long to stay.’ So yes, and we do have examples of these door signs on our website, Christine, so that link will be at the end of the podcast if people want to look for those.

Christine
The other thing is, it's okay to turn off your cell phone, have it on silent. Nowadays, we've got cell phones on us all the time and people can reach us all the time. But actually, you've got control over that and you can actually say ‘No, I'm going to take an hour to myself.’

 Denise
Actually, that's good advice for all of us Christine, not just somebody who's unwell. We probably all need to learn to do that.

Christine
I know, but we're bad at it, aren’t we? So it is something people can think of. And, you know, by doing that they can screen the calls, because they can decide what's important. For patients I always feel it's about having control because there's so many things you can't control. They can't control the disease, they can't control what's happening with their bodies necessarily, but they can control other things – what's happening round about them. 

Denise
Christine, one of the things I think is often an issue for patients is around having somebody come in to assist with washing and dressing. And this comes back, doesn't it, to their priorities – what's important to you, but actually allowing someone to help because that is exhausting. Showering, dressing can be really exhausting. That can save energy for both the patient and the carer, can't it, if someone else comes in and helps with those things.

Christine
Personal cares is an important one, because we feel better if we feel we've had a good wash. If you have someone giving you a hand, it can take a wee while to get your head around that – that someone’s going to help you. But once you can get into that thought that actually this is for your benefit, you'll have more energy for other things, and you'll be safe. 

It can also help your family stay family. I sometimes think it's hard for family to go into the personal care side of things, because in a way they want to stay family. And sometimes someone organising the dinner, whether it's preparing it so it's ready to go or heating it for you if you live alone, If you don't have to take the energy to actually do that yourself you'll actually enjoy the food. Sometimes by the time you've cooked or heated something up, you just don't want it.

Denise
You've become over it haven’t you, so you're right. There's real value in having that meal served up.

Christine
It's important I think, that people think about what activity they need to happen and is it something they have to do or they want to do, or is it something they can delegate? Because I always think in palliative care, it's great if you can delegate and choose the things that you really, really want to do yourself. 

Denise
And it's a gift you give people, allowing people to help you, because they feel valued and useful. So it is a gift that you give. Christine as an OT, I'm sure there's lots of equipment that can also help with fatigue, isn't there?

Christine
The local hospitals have occupational therapists with a whole range of things. So you'll find your care coordinator will offer to ask the occupational therapist to come out, because what an occupational therapist does is they have a walk around the house, they'll look at the activities you have to do, they'll look at the environment that you're having to navigate in and they can almost predict what might be a problem maybe in the future, if not now. So they'll offer you some solutions. 

And for people, quite often they see this as a bad thing. They think ‘This is bad, I'm accepting equipment – that means I'm really getting worse’. But actually, if people can reframe that and think  it's actually about helping them maintain their own independence. You can have a kitchen trolley, for instance, that will let you move things from the kitchen to other parts of the house. So if you normally use a walking stick, for instance, you can use your trolley to lean on, and you can carry things, which is difficult when you've got a walking stick. So you can carry say, your food from the kitchen into the living room, or you can carry some folded washing from the living room to the bedroom – you know, very practical things. Getting up and down from a toilet can be really hard and can take a lot of energy because toilets are notoriously low. But if you have a raised frame, and it's got arms on it, so it's like getting up off the chair, it becomes easy, and you use less energy.

Denise
And you maintain some independence.

Christine
Uh huh – I mean, a lot of people feel like they're giving in when they allow an occupational therapist to come out. But I think you just have to reframe it in your mind. It's about keeping your independence, not losing it.  

Denise
And this is something too for people, that this also helps ease the burden for carers. So this one also eases a carer’s fatigue, if that right equipment is there to help the person who's not well ,so it helps both people, doesn't it?

Christine
You can get equipment that helps you getting in and out of a car for instance, and normally your carer would be trying to help lift you in and out of the car. And we're really trying to get carers not to lift – it's about moving and handling and making things easier, safer for them and for the patient. 

Denise
Absolutely.  

Christine
if you're not sure, talk to your care coordinator or whoever your link person is and see if they've got some suggestions for you, if you've got a difficulty with something,

Denise
Anything you’re having a problem with, somebody will be able to help in some way. Hey, thanks, Christine. Thanks for joining us today. 

And thank you for listening to us. 
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