Care and Tips for Carers

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Kim: Welcome to the MS Education podcast series. Thank you for joining me. I'm Kim Repcak, and in each episode, we are going to be joined by an expert to discuss strategies for living well with MS.

Today we'll be talking about the importance of self-care for family members supporting a person with MS. Recognising yourself as a carer is a big step. Often family members don't see themselves as providing care but see it more as their normal role. Welcome Supporting a person with MS can be very rewarding as you focus on building your relationship and supporting the person you care most about.

However, in order to do this, it is so vital for family members to also focus on their own wellbeing and self-care. Today I will be interviewing Catherine Smith, MS Social Work Advisor, to share her experience in supporting family members to make self-care a priority when supporting a person with MS.

This will be followed by an interview with David who supports his wife who has MS. Welcome Cat.

Catherine: Thanks, Kim. I appreciate the opportunity to speak today.

Kim: Cat, you've been a social worker at MS Connect for over four years now. I imagine you've supported many partners. Supporting a person with MS during this time. Why is it so important for us to raise awareness of carers needs?

Catherine: Yeah, that's right Kim we do. And it's actually quite an important part of our role. I think it's important to start by acknowledging that the carer role is really varied and there's no one size fits all formula. There are many types of carers, spouses, siblings, parents, children, friends and there are different stages of caring too. So, while there will be unique aspects to each situation, there are also key underlying principles that will be universal to all carers. And that's what I want to share today. There are many positives to caring, it can be a really engaging and rewarding experience.

Now for some people, the job is really straightforward. They can be naturally inclined to the role they have great family and friend supports. They feel confident about linking into services, you know, as they need. For others though, it's like navigating a confusing maze. It's a steep learning curve, a scary place of unknowns and uncertainty.

Kim: Cat, particularly in supporting someone with MS because it can be uncertain at times.

Catherine: Uncertainties is, you know, the one guarantee I think in any caring role. And so, it's about being acknowledging the uncertainties and being confident in the things that you can't control and what you can control and taking charge of that which you can. But this is why there needs to be a space for carers to have support at all stages of the journey. The problem that we often see is that carers need to accept that help. So, willingly or unwillingly, we see that carers put such a priority on their loved one's needs that they neglect their own needs. And this is problematic because if a carer experiences what is commonly referred to as burnout, then neither them nor the care recipient will benefit.

So, we need to make sure they understand how valuable they are, but also that they're not invincible. And so, we hope that the carers will accept supports so that they're experiencing, the experience will be challenging but still rewarding for most people.

Kim: Absolutely. So, what are some of the difficulties that carers, family members might experience in supporting a person with MS?

Catherine: Everyone's caring experience will be different, just like the actual presentation of MS is different. Just as a person who's the one diagnosed with MS needs to adjust to the various onset of symptoms, so too does a carer. And just as a person diagnosed with MS may experience a rollercoaster of emotions, the same will apply to those in the caring role too.

So, carers need to grieve and anticipate changes to plans. But often they don't give themselves permission to do this. Or if they do, they feel so guilty about it, because they're not the ones physically living with the condition. And so, what we see is that both the carer and the recipient both need to adjust to a change in roles and find their new rhythm. So, someone might find themselves taking a greater role in managing their household finances, or maybe now they're the ones who are starting to prepare their meals. So in many cases with MS, we see that work and finances change, and so goals constantly need to be realigned to the situation.

Where we see the problems arise is where there's an unwillingness or perhaps an inability to make these changes to adapt. And then once you've made them there's that need to continue to adapt over time as well. Now it's certainly not easy and I don't want to downplay it, not even for a second. But when people are feeling stuck, that's the best time to go and seek that support.

Kim: And I guess Cat, it's tricky. I'd imagine that there's some people that don't see themselves as a carer and therefore don't prioritise themselves at all.

Catherine: Ah Kim, absolutely. Stigma around the word carer still exists and can be a barrier for some people. You know, you can still keep your identity as a spouse, as a parent, as a child, friend and still access the carer supports. It can take time to see yourself as a carer.

Keep in mind that caring shouldn't ever become your whole identity. I guess a problem that we often see in our work is that those in a caring role don't prioritize the need to access support for themselves. And now, of course, I'm not referring to everyone, but there are carers who are reluctant to have the conversation about how they're going. They only want to discuss how to help their loved one.

It's almost as if the words self-care and asking for help are like swear words. It's like suggesting that accessing support is implying a carer isn't coping or is failing in their role. You know, working in a phone support role, but I can like almost picture the rolling of eyes at the suggestion of self-care. They think, seriously, I have a thousand other tasks I need to get done today. And now you want me to sit for a cup of tea and read a book for half an hour. That's just not going to happen. But the thing is, if a person in a caring role, whether they call themselves a carer or not, doesn't self-reflect on how they're traveling, and I mean a proper self-reflection, and then they can start to burn out. It happens, believe me. It creeps up too, because so much of the care becomes a new normal and it becomes hard to recognize. Now, I was trying to think of, you know, some of the, you know, common examples of burnout and, you know, it's as simple as just not wanting to get out of the bed in the morning because you just can't face the day or, you know, you're finding yourself yelling at your loved one or screaming at the dog.

I've spoken to carers who will spend all day out of the house just to escape. They no longer feel comfortable in their own home. Some of the situations we hear truly are heartbreaking. So going back to my earlier comment, it's the people who have the thousands of tasks to do, they're the ones that need to stop for that cup of tea the most. And I say that because we just say it too often. I think the really important message is, is that it's much harder to put supports in place once a crisis is happening. Not to mention the extra distress it causes for both the carer and recipient. So, my advice is, start looking after yourself right from the beginning. It really is important to minimise that risk of carer burnout.

Kim: Great messages Cat, so important. I imagine that when you're in a crisis, it's probably impossible to see what you need. But when you're calmer, you can actually see some strategies and ways to push through.

Catherine: Well, I think one of the problems that we find is that you know, you need to have a clear head. You need to sort of really think about what you need to do and the reality is that, you know, things don't happen quickly, You know when you've got that time to prepare, you can get used to new routines, you can get them established and it just makes the whole process a lot more streamlined and therefore less stressful for everyone.

Kim: What is helpful in maintaining self-care for carers? What can they actually do?

Catherine: Well, there's actually a lot. So, nothing that I'm going to say is rocket science either. So, you'll probably find that carers are incorporating many of these strategies into their daily lives already. You know, for carers, it's just so important to maintain a space for your own interests and own goals.

So, the word carer is not synonymous with martyr. Having a break is vital and you need it to refresh your energy levels. When you are recharged, you'll power through all the other tasks in your day more effectively too. More than ever, you need to adopt the key messages of a healthy lifestyle, eat well, sleep well, exercise, look after your mental health. If you're not getting an opportunity for this, then that's the time to look at further supports. You need to keep well in order to keep up the caring role over time.

Now another one is not to let friendship slip away. So, you might not want to feel like you're constantly burdening, you know, your friends with, you know, stories about you carrying a role and frustrations. But don't shut people out either. If friends haven't reached out to you in a little while, then it's time for you to pick up the phone and give them a call.

If you need a separate space though, to talk about what's going on, well this is where counselling is invaluable. It's a time just for you to debrief. Get advice on healthy communication strategies, for example. You can problem solve and the best thing is, it's an impartial person. If you are interested in giving it a try, then I highly recommend speaking to Carers Australia about their six week Talking It Over program. It's quite structured. Or go to your GP and speak to them about the Medicare subsidised counselling options available to them. Which leads me to the importance of speaking to other carers. Okay, that's easily done and MS will, you know, absolutely support you to link in. The power of solidarity for those who know what you're going through is just invaluable and you'll no doubt pick up tips along the way as well.

And I guess finally, it's probably not a bad idea to familiarise yourselves with formal supports in the community, such as financial help through Centrelink, such as the carer allowance or the carer payment. There are things like companion cards through to programs like the NDIS and My Aged Care. So even if you don't need it now, if you have a look at what's available and familiarise yourself around some of these supports, you'll actually feel a lot more reassured in knowing that there is help available should you ever need it. And that in itself is actually quite powerful.

Kim: You touched on this before Cat. When is the best time to start thinking about accessing support?

Catherine: The best time to start is always before you need it. Okay, so I want to clarify, when we refer to carer supports, it doesn't mean jumping straight onto, you know, booking in care support workers to come in and out of your house every day. Okay, it's really important to start with simple practices that then become your routine. And this is where that self-care message should come in loud and strong. So, for example, ensuring you get that time to yourself, a space where you are not a carer for just a few hours or even a day. This might be when your loved one is having a catch up with one of their friends or a neighbour, or is attending a peer support group, or an exercise class in their own right.

And I should mention, time out is not doing the grocery shopping alone, unless you genuinely love it of course, but it could be a couple of hours dedicated to doing a sewing project or visiting the swimming pool or having a cuppa with a friend. For me personally, the idea of having a nap occasionally would be my idea of heaven.

But the thing is the caring role is often about living with uncertainties, and we spoke about that earlier. So, while there are many aspects that can't be known, you need to take control of what you can. And if you do end up needing more formal supports, such as government programs like the NDIS or My Aged Care. Look, the reality is there are forms, there are processes, there are waitlists, they can be a pain. I really want to reiterate that if you think about these things earlier rather than later it's going to pay off, I promise. When you are already busy, it's easy to make thinking about carer support a low priority. Oh yeah, I will get around to that. It becomes a task that never gets done. Kind of like that will keep, you bought the learn a new language CD that is sitting around gathering dust. Well, maybe that's just at my house, but as I mentioned, you know, life is uncertain. So, you won't know if you're going to get the flu in a few weeks or whether you might sort of have a fall and break your arm and for whatever reason you're going to be bedridden for a week. So, you'll need to have a plan if you can't engage in your other activity, in your regular activities. So, I ask you know, do you have one? Who's going to pick up the kids from school if you can't? Who's going to get the groceries if you can't?

So having one of these plans will ensure your routines can be maintained as best as possible. That's, you know, ultimately going to save you so much stress and possible distress in the long run.

Kim: I imagine, Cat, that what if often would occur for carers. That could create a lot of stress, just the what if this does happen and if they haven't made those plans they might feel quite anxious if they did have a fall or were unable to fulfill their caring role.

Catherine: I think you're right but I also think there's a bit of the head in the sand and you might have really great intentions to get it done but you know we can be sort of stuck in our comfort zone and in the status quo and so it's one of those things that gets put off. I mentioned like that will kit or like an enduring power of attorney you know how many of us have such great intentions to go fill up those forms and they're not hard. It's just putting the time and space aside to do it but we don't because it's not a problem that we're facing right now, and we're so consumed with everything that we're doing right now. It's planning ahead for some people is really challenging and I'll put my hand up, I'm guilty as charged, I'm a shrugger.

Kim: It's interesting, the carers that I've spoken to often don't realize just how beneficial Peer Support is until they go to a group when they come out of the group. They'll say wow I didn't realize there are so many people that feel similarly to me and just to get that support and the long-term benefit of then going home and being fresher to then fulfill their role and really enjoy what they're doing having had that little two hour break

Catherine: You know, you're right because I think there's like a stigma around, you know, like sort of support groups, like maybe from like television shows where you have to sit around in a circle and, you know, ‘hi my name is’ and if you can sort of push yourself out of your comfort zone a little bit, yeah, undoubtedly sort of every person, you know, you speak to, goes ‘wow, you know, I've taken away so much’. So even if you're not sort of doing a lot of the speaking, sort of when you start just hearing other people's experiences. It's so comforting and you will, like it's knowledge that you get from a different perspective. You know, as a social worker, my experience and the information that I can impart is very different, okay, to what someone who's living in a house with MS present, you know, 24 7. What they're going to share is very different to sort of what I can, and so it has such an invaluable role to play that no matter how amazing I am at my job, I won't be able to sort of have that same perspective that I can share.

Kim: So, Cat you've covered some great information. What might be your take home message for people listening today?

Catherine: Okay, this is my big one. If you take away nothing else, you know from what I've said, I want you to know prevention is always better than the cure. Learn about supports, engage as needed. Do it earlier rather than later. Please plan ahead.

Self-care isn't just an ideal. It's a necessity and I can't recommend the value in speaking with other carers enough. So, the MS peer support really is a wonderful option to do this and there's so many ways in which it can be done. So, there's the one on one peer support or there's joining the MS family and friends tele group. Find out from other carers what is working or what is not working. And there's such a sense of comfort and reassurance in that solidarity.

Accept offers for help. Start with the small offers, so that if more help is needed in the future, it is less daunting to accept it. Because, you know, accepting help is a step out of your comfort zone for many people so start small. And finally, familiarise yourself with what supports are available to carers. So, a plug for MS, you know, MS Connect 1800 042 138 and the MS website www.ms.org.au are absolutely great initial sources of information. And remember that Multiple Sclerosis Limited is there for carers too, as well as those, you know, diagnosed with MS.

You know, so that I'm not bombarding you, there's a really great website or phone line called the Carer Gateway, 1800 422 737 or www. carergateway.gov.au. It's an Australian Government source of information, so it's really reliable and its practical advice for but also, they can link you into further supports as needed. So, if you've never had a look, I can't recommend it enough that you sort of give them a call or just take a visit to the webpage.

Kim: Thanks, so much Cat. That's such valuable information and I'm really sure that there are many carers that will benefit from this and hopefully reach out. Welcome David.

David: Hi, thanks for having me.

Kim: David, you've been supporting your wife who's had MS for over 11 years. I can imagine you've learnt a lot during this time about the carer's role. This knowledge and experience is so valuable to other carers who might be listening. So, I really appreciate your time today.

David: My pleasure to be here. Thank you for inviting me.

Kim: So, David, would you mind sharing with me what you feel some of the difficulties might be for family members who are supporting a person with MS?

David: Sure. So, I can really only speak to my own experience. Everyone's experience is probably a little bit different, but from my perspective and from my wife's perspective as well, I think the changed expectations are a large piece of the puzzle for us. And our experiences have changed over time. I think at the beginning we didn't quite realize how greatly our own lives and expectations would change as a result of the diagnosis. But then dealing with those changes, having to walk more slowly the changed expectations of promotion in the workplace. Also, some of the good things, a slightly healthier diet came out of it as well, but those changed expectations probably are the biggest things for my wife and for me as well.

Kim: So, it sounds like, David, amongst those changes, there might have been some changes in roles, perhaps needing to support one another in different ways?

David: Sure, absolutely. When my wife was diagnosed she was about 12 years younger would be late thirties. So still sort of young with expectations and I think what was most difficult was learning to slow down and conserve one's energy. I think it was very frustrating and distressing for us both to not be able to do the things we used to do. You know, we couldn't stay up as late as we wanted to. We couldn't walk through the city as fast as we wanted and at the beginning, we probably pushed too hard and we spent a lot of the weekends just recovering, both of us. It's from the tiredness that comes from dealing with the changed physical abilities and changed and the fear and the unexpected consequences and it was a very turbulent time at the beginning.

Kim: And I've heard people say that the person has MS, but the MS is in the relationship. So, on that note, I'd imagine it's really important to communicate with each other.

David: Sure. I mean, it's very much, although only the one person has the MS, the shared lived experience is something that you live through together, and as you said, we need to find a new way to live the partnership. A new set of roles in that maybe different people have to do different things, maybe we have to eat differently so that is an accommodation that has to take place between the two people.

Yeah, so it has affected to that extent, the relationship a little bit, and it needs a lot of understanding, probably a lot of time as well, just to reach that new level.

Kim: How important is self-care for carers?

David: So, I don't want to be selfish, but I think it's probably vital. If you're not looking after yourself, you can't really help others. You have to maintain your own level of energy in order to help other people. Change one's own expectations. So, one isn't always the fixer. One is also becoming comfortable with the idea that I can't help, I can't fix this, I can't resolve this, and that's okay. And that's an important part of self-care for me, not to put myself under the pressure of having to respond to every new difficulty with that, I must resolve this. Sometimes you just have to listen and live with it, and that in itself is, is a help. And for the carer as well, it's an element of self-care to allow yourself to give yourself permission, not to feel obligated to fix everything because, you know, we're not medics and somethings can't be solved anyway.

Kim: That sounds like a really good perspective to take, that there's only a certain amount of things that we can change and deal with and maybe it's an enablement role, enabling your partner and supporting them as best as you can.

David: Yeah, communication and letting them have a say and also providing a sounding board MS. So that there's a sense of perspective and reality. So, to take an example, you know, when I don't have MS, but I, and I know that people with MS feel a lot of pains and some of them are frightening if they're in the brain or in the head or in the back. And sometimes I just say as well, yeah I get those pains too. And it's a really grounding thing and suddenly you get, ah, not everything is MS. There's, you know, MS is one part and a large part, but it's not everything. And just being able to provide that sounding board and just say you know, it's an equal, you know, I get that pain as well.

Kim: What have you found to be helpful in maintaining self-care?

David: So, I have my own hobbies just my wife has her own hobbies. So, she likes cooking that's, that's one of her hobbies. My hobbies are, I like art. I like reading books. I've still got my own circle of friends that I, that I really take time to catch up with. There are other sort of more formal avenues as well, such as counselling. I read a lot of books and just draw on friends and family a bit, I think. I'm just trying to make sure that we do a multiplicity of things. There are several things that we do that our life doesn't sort of tunnel down into this one focus of the diagnosis of MS. This is a long race to be run, there's many many years ahead of us, and we need to keep lots of things in our lives. And I just try to keep looking for those new things, doing those new things, and just like everybody, catching up with friends, going to football, all those sorts of things. They all still need to happen.

Kim: Sounds like you've got a really good balance, David.

David: It does at the moment. It's probably a good day today, but I mean, everyone has good days and bad days. So, you know it's not a walk in the park. There's a lot of losses that come with the diagnosis of MS, career, holiday, walking, a lot of losses. It's hard to be permanently upbeat, but I think, I believe, you know if you look you will find, and just the act of looking is itself, you know, a really helpful thing to try and see what you can find to make things a little bit better each day.

Kim: Awesome perspective. You're the peer support tele group facilitator for the family and friends tele group.

David: Yes.

Kim: How can that benefit carers?

David: So, I think it's a little bit of a sounding board. People can just put ideas in and see whatever. People think, you know, sometimes you think, am I going crazy? Am I thinking something unusual or unacceptable or you know, am I not managing well? And you can just put ideas out and see what other people think. It's just, you know, a forum for ideas, nonjudgmental, it's not technical, it's not medical. It's just an opportunity to touch base and just see, look, I've experienced this, has anyone else seen it or experienced this? And if they haven't, you know, that's fine. And if they have, that might be interesting. You know, someone might say, oh we contacted our local council for a cleaner, or we contacted NDIS for a gardener or whatever it might be, and it might just be, you sort of put an idea out there. Nothing comes back and everyone's like, oh that's new. But just having that sort of sounding board where you can share ideas and just make it more real and less living in your own head and more sharing with other people, which just keeps you going, I think.

Kim: Excellent. And I know that people can link into that through MS Connect and it's once a month. Is that right, David?

David: Sure. First Tuesday of the month. And if anyone would like to join in please do just contact MS Connect. And they will pass me the details and I can send you all the information. Very easy to log in, very informal. You don't have to speak up or anything. You can just lurk in the background and listen if you want to or join halfway through or leave early. It's really a forum for people to come and go as they like.

Kim: Thanks so much, David. That's some awesome information and I'm sure that the carers listening will greatly appreciate it. Thanks very much.

David: No worries at all. Thank you very much for having me.

Kim: For more information on anything that we have covered today, please get in touch with MS Connect on free call 1800 042 138 or email [email protected]. And don't forget to find the MS podcasts on our favourite podcast player such as Apple, Google Play, Spotify, Overcast or you can access the podcast directly from our website ms.org.au.