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2020 CarerHelp Campaigns - CarerHelp

2020 CarerHelp Campaigns

During 2020, we worked with Grant Law Public Relations on a CarerHelp campaign. The goal of the CarerHelp PR campaign was to create meaningful awareness of the CarerHelp website and its contents. Given the breadth of the target market, mass media communication, consisting of traditional media (print, radio, tv etc) as well as social media channels like Facebook and Instagram were approached. The campaign also made use of the respective independent networks of the CarerHelp project partners i.e. Carers Australia, UTS, CareSearch and the Centre For Palliative Care Search. CarerHelp is an initiative led by St Vincent’s Hospital Melbourne’s Centre for Palliative Care in partnership with Flinders University’s CareSearch, University of Technology Sydney and Carers Australia, the peak body for unpaid carers in Australia. The campaign ran from May to December 2020.

Articles

Opinion: Supporting a death-literate Australia

An article published on Community Care Review website, written by Professor Jennifer Tieman.

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COVID-19 and being the best carer you can be

An article published on National Senior Australia

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Only get one chance to care for those you love | Carers get the help they need

An article published on Bega District News

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CarerHelp: A new online resource supporting family palliative carers

An article published on Australian Nursing & Midwifery Journal

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How to care for someone in their final days: Who cares for the carer, and where can they find support at an already tough time?

An article published on Body and Soul

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Videos

National Carers Week

Caring at the end of life: Navigating grief and loss

You will hear from a carer, a social worker, a grief specialist, a researcher and a funeral director all talking about their experiences and perspectives of grief and loss before and after death.

Gage Brewer talks about supporting the LGBTIQA+ community at the end of life.

Kate Jurgens shares about her role in providing bereavement support to people through palliative care.

Tara, who works in a country regional area, shares her role in caring people at home, in hospital and residential aged care facilities.

Dr Lawrie Palmer believes that CarerHelp meets a very real unmet need.

Dr Teena Silakong shares her thoughts on why CarerHelp is a useful resource for family carers.

Paul Tait, medicine pharmacist, who believes that CarerHelp offers valuable information and resources to assist cares with medication management.

Geoff shares his views on the benefits of CarerHelp to other family carers.

 

Radio and Podcast

CarerHelp Podcast 1 - an overview of the role of a lay palliative carer

In this first episode of the CarerHelp podcast, Grant Law speaks to Professor Jennifer Tieman and Geoff Thomas OAM about the plight of palliative carers in Australia. This podcast offers extensive general advice to lay palliative carers, offering tips and food for thought for what many describe as one of life’s toughest challenges.

Prof Peter Hudson talks about CarerHelp on 2GB radio.

Prof Peter Hudson joins John Stanley on 2GB radio talked about CarerHelp project.

Audio transcript

Dr Tina Thomas talks about CarerHelp on 3AW radio.

Dr Tina Thomas talks about CarerHelp on 3AW radio with Dennis Walters.

Dr Tina Thomas talks about CarerHelp on 6PR.

Dr Tina Thomas talks about CarerHelp on 6PR radio with Tod Johnston.

Audio Transcripts

John: Now something just a bit different tonight

I know there's an organization called CarerHelp which is an advertiser on the station here and I’ve heard them talk about this and it's about carers.

And I know a lot of you talk about carers in different contexts so for insistence it might be you're looking after your parents. It could be in some cases parent looking after children or grandchildren and you are a carer and we don't do enough for carers but what about someone who's suddenly plunge in a situation of being a carer for someone who's terminally ill it could be a partner, could be a friend could be a member of your family.

Where you go and where you find information. That's what this new CarerHelp is and it goes to that question of palliative care is something we… you shy away from it; you don't talk about it and my instinct is whenever you feel that way you think Ok well, I do want to talk about it.

Professor Peter Hudson from the university of Melbourne, he's a project leader for carer help, he joins us on the line now.

Professor good evening.

Peter: Good evening John, and thank you very much for this opportunity.

John: Am I right, people can suddenly find themselves looking after someone who is terminal ill and they’ve really got not much of an idea of how to go about it?

Peter: Yeah, you're absolutely correct John, So CarerHelp is Australia first comprehensive online resource dedicated to family carers who are looking after someone who is at end of their life.

We know that most family carers are quite frightened  by the prospect of supporting a person in approaching end of their life is one of the biggest most important challenges however face.

And as a nation, however we are typically reasonably well prepared for birth but for most part, you know, fairly poorly prepared for death.

So CarerHelp tries to address this offering reliable information that is relevant to the specific needs. So Family carers who is now to somebody who is approaching the end of their life.

John: I am imagining, look I haven’t look through the information, but I am imagining some of it would be helping people to know what kind of conversations they can have and what they can discuss with the person

Peter: Yes indeed. So we know that one of the biggest challenges for family carers is they typically feel unprepared for the roles and they're not receiving often adequate support.

About 14 percent of Australians want to die at home. Sorry the overwhelming majority Australians want to die at home but only 14 percent do and that typically because of lack of support for family carers and we know that the family carers

want to know typical things like what to expect when the terminal illness progresses, how to recognise when death might be close. Some of the practical aspects supporting someone who is actually dying and what to do after death including some of the legal consideration as well preparing for funerals and bereavement support which is so important as well but often an area that under explored and under supported.

So the communication as you raised John is absolutely crucial and CareHelp assists in this regard by equipping family carers with some tools and resources. So they can start having conversations with the person they’re looking after but also with extended members of the family also with health carer professional about their needs, about their key priorities. Hopefully they can be addressed.

John: So even one bit of what you just said, and I am kind of immediately shy away

from wanting to explore it, but I really should that when you said helping people know what to do when somebody is dying.

Peter: Yes, because this is an area that is foreign  to most people and for many family carers they’re isolated, they're the ones that are home often looking after somebody coming toward end of their lives. Many family carers would have some support but that support is not necessarily available 24 hours a day So a lot of family carers doing this in very isolated way and they need a chance to be able to better prepared for this role and be able to access resources and tools to help them, particularly when a person is approaching last day of weeks of their life.

John: Yeah if the person says what is happening, I mean, they are asking, how do you deal with that? Cause, some of the answers going to be a bit sophisticated. You won’t stop there?

Peter: Indeed and I think the key thing or feature about CarerHelp is that it provides suggestions in term of some key comments and responses to common questions that people might ask as they are approaching the end of their life, but also provide resources regards to who to contact if the question you find difficult to answer.

And some cases, obviously health professional support is needed to help guide the carer so that they can be clear of what is actually happening at this particular point of time. And to confirm that the person who is looking after is actually getting very close to end of their lives. So, they can be as prepared as possible.

John: So, someone seriously ill and they towards end of their life, they can opt to say look I like to stay at home with my partner, with my children. They like that as well, is it possible for that to happen in quite a few circumstances? Obviously not in all, but is it possible?

Peter: Absolutely, so Australia has got one of the best palliative care services in the world, however, there are large number of patients and family carers who are unfortunately still missing out on the support that palliative care can provide, so when special palliative care involved, umm, usually the support provider to patient and families is exemplary and that choice to actually live and die at home can be upheld wherever possible with the resources the special palliative care can provide. But unfortunately, as said, a lot of Australians are missing out on access to palliative care.

John: Ok, look, there is a whole range of organizations that are involved as well

You know, I just can't list them all but I am looking here Parkinson’s Australia, Dementia Australia, MND, which is, just wicked disease for which it doesn’t seem there is any curer at the moment. There is whole range of it here. Of course, Cancer and lungs, all of the various elements that decline people's lives. So, this has been put together in council of all these other organizations, the toolkit so people can get on there, they can have a look and as you say 14 percent of people who wanted to die at home end up dying at home, is that right?

So, there's a lot that would prefer to stay at home for those last days.

Peter: Sorry, just to clarify, the overwhelming majority of Australians would prefer to die at home, but only 14 percent do at this moment. (I clarify for that).

Typically, because their family carers are not properly supported and often because they don’t have access to palliative care, which they should.

John: Alright, Yeah, they should of course, and this is a step in that direction with CarerHelp, which is available. It's an online website and all the information is?

Peter: That is correct, so carerhelp.com.au is free to access and we encourage all family carers who are in the situation looking after somebody towards the end of their lives to access this, and we hope this going to be very valuable tools to assist them as I have said, a very complex, very challenging responsibility and hopefully this going to be partway to supporting them in this really really difficult role.

John: Professor, I appreciate your time tonight, thank you so much.

Peter: Thanks very much John.

Grant Law: The CarerHelp Podcast is brought to you by carerhelp.com.au, the comprehensive online resource dedicated to supporting everyday Australians who are providing end-of-life care to a partner, relative or friend. Carerhelp.com.au offers an extensive range of advice and support for family or lay palliative carers and as an initiative led by St. Vincent's Hospital Melbourne’s Centre for Palliative Care, in partnership with Flinders University's CareSearch, University of Technology Sydney, and Carers Australia, the peak body for unpaid carers in Australia. I'm Grant Law, and I'm joined on this podcast by two very knowledgeable and experienced people in the field of palliative care. Professor Jennifer Tieman, who's Director of the Research Centre in Palliative Care, Death and Dying at Flinders University. Welcome Jen.

Jennifer Tieman: Thanks Grant. Lovely to be here.

Grant Law:  I'm also joined by Geoff Thomas OAM, who's a member of the board of MND Australia, and also Chair of the Motor Neuron Disease Association of SA. Geoff is with us to share some of his insights and experiences in the field of palliative care from a personal perspective, having cared for his wife Mary, when she was diagnosed with MND in 2013, until her passing in 2017. Welcome to you Geoff.

Geoff Thomas: Thank you Grant.

Grant Law: I've just realized I'm the only one without a fancy title. Something I might have to work on, but welcome to both of you. We are going to be talking today about some tips and advice for people who find themselves in that challenging but a role that is something that most of us will experience at some point in our lives, and that is caring for someone who is at the end of life, and Jen, I'll start with you. You obviously have a career, you've made a career out of this. Can you give us a little bit more about your background?

Jennifer Tieman: Yes. Look, I've come from a number of different places. So I've actually worked in communities and I've worked in education and I've worked in the public service, and I actually ended up in palliative care doing research around how do people use information to help them provide care both as professional carers or health professionals, but also as family carers. The people who are actually at the hard end of working with a family member or a neighbor or a colleague, and I guess for me, the information we could provide, we need to be able to help support carers because they have a critical role in actually supporting people not only in the hours that people are with health professionals, but also in all the time when they're not with health professionals, when they're at home and they're working with and caring for, and just being a partner to the person who is going to face death and dying, and I think it's an incredibly important thing and a role that carers do.

Geoff Thomas: In fact in the economic analysis done by I think it was Deloitte some years ago, put the cost of MND for argument's sake very, very high. Higher than most other conditions requiring carers. One of the reasons was that not only did the patient need to leave the workforce, but the carer needed to leave the workforce. So the down cost in terms of productivity are enormous.

Jennifer Tieman: And that's been replicated in a number of these reports, which actually say carers are actually vital for the economy, but actually often carry personal costs associated with caring, and so I think it's this double component of actually supporting people, enabling them to remain at home often until death, and also then being able to continue to live not only during the caring, but to actually have a life after death as well. So it's a very important role and support for carers is critical.

Grant Law: And so I think a lot of people might not maybe realize what an important role carers play. I mean, there's almost an economic value to it other than the altruistic value to it because someone has to care for the person who's ill.

Geoff Thomas: The important issue there I think is that almost everybody who is diagnosed with something which is going to take their lives sooner rather than later, the first decision that they'll make is they want to remain at home. So that then raises a whole number of different challenges, and it's important that they remain at home. It's important for the government that they remain at home because it's so much cheaper to care for them at home than it is in hospitals.

Grant Law: Absolutely.

Geoff Thomas: And there's better care, except if they are of course an acute case then that's different, but most people want to do it at home and in fact, most people would say, yeah, and I'd like to die at home.

Jennifer Tieman: Yep. Can I just add, and I think it's really important because not only is it that people want to remain at home, they want to keep living and living is where you live, it is not in an acute hospital. It's not in those places. So remaining at home gives people the quality of life that's really important because we just don't want to be dying, we want to be living as we become sicker and age and die.

Geoff Thomas: And I think too Jen that when you get... If you do need to go to other care, what happens is it is more difficult for the family to keep contact, and it's particularly more difficult for your friendship networks which are absolutely critical for the patient and the carer in managing this journey. It becomes difficult for them whereas if you're at home, well, they're probably used to visiting as groups at home and it's just continue on as normal, which is what you want to try and do.

Grant Law: Well, look, this podcast is really about offering tips and advice to people who may have found themselves suddenly thrust into this world of looking after a loved one, a family member, a relative, and so we're going to offer that sort of advice I guess in a chronological order, and I think I'd like to start with you Jen. There's obviously a stage where the person has to decide, or maybe they don't decide. Maybe they just assume that they have to be the carer, and because they're that, the husband or the wife or the person technically closest to the individual is done, but that's not always the case is it? You shouldn't always just assume that role, and what advice would you give to someone who's perhaps concerned that they should be the carer or maybe they shouldn't?

Jennifer Tieman: You know I think it's often that being a carer is a sort of progressive activity. You start in a normal relationship, you go and see a doctor with your partner or your child or your parent and you're sort of talking about things, and then you're starting to see that maybe things are progressing, or you might go and get a sudden diagnosis, and I think one of the issues is we have is this term carer, and it is an important term because it actually provides information in the government sense of how to support you, but it is also part of getting you an opportunity to be a point of contact with the health professionals, but it's not something that you have to take on, that carer role in the way it's defined, and there's many different types of carers as well. 

I think people provide care in different ways. Some people provide direct hands-on care, others support a family member in terms of providing assistance in the home or by managing financial affairs, and sometimes it's not a single person as a carer, but a group of people who are providing care but often we do have one person who is a carer and they become really critical in the process because they are the person that shares the journey with the person who is heading towards dying, and they're also often the contact for the many responsibilities that can come with caring as well.
Geoff Thomas:    Would it be fair to say Jen, that we don't do a very good job in discussing with potential carers what this is going to involve so that they can make that early decision because they have a life as well?

Jennifer Tieman: I think that's a really good point and I think there's a sense in which having an idea of what is likely to happen over time, having an understanding of what your role could be and some of the supports that are available, and I think trying to understand that and negotiate early is really important, and also being willing to say, I can't do this because you know you either physically are not capable of doing it, or if you can't because it means you'd have to give up work and maybe you have children and other responsibilities that can make it very complicated

Geoff Thomas: Or the relationship might have already been difficult anyway and this is the thing that breaks it completely.

Grant Law: So what would you recommend then? What is it about the individual who, you know, if they maybe decide that it's not for them or that they can't act alone, do you call a family meeting? Meeting of family and friends and discuss that as a group as opposed to it just happening?

Jennifer Tieman: I think that's really important, and I think it's also important to discuss it with the healthcare team to understand what is likely to happen over time and to understand what needs will be emerging over time and what to expect, and I think then understanding that you don't need to be alone in this process and that setting up supports can be critical for this and trying to get services involved depending upon what the disease is and what is likely to happen over time. That understanding that is critical in being able to make this choice to be a carer, but also perhaps to say, what is the type of carer that I'm willing to be as well and -

Geoff Thomas: Yeah.

Jennifer Tieman: I think is a critical point.

Geoff Thomas: The level of commitment.

Jennifer Tieman: Yes.

Geoff Thomas:And I repeat, I don't think we are equipped or do that discussion very well at all, and is that Jen because it's a bit like having a difficult discussion right towards the end of life that you really are accepting that there's going to be a major change in your patient's life and your life and it's not an easy discussion to have.

Grant Law: Surely you've got to see what's best for the patient if you like, or the person is dying, and that makes it probably easier to handle then doesn't it or?

Jennifer Tieman: I think the other thing is it's often not a single conversation because when people first get a terminal diagnosis and actually told that there is no cure and that what we will have is progression to death, that's a hard thing to actually have as your first discussion. So that's something that people need to go and think about and understand that, and you know, people often say they can't absorb everything that they're told at a single meeting. So what you need to do is have these conversations over a period and understand what is likely to happen? When is it likely to happen? This isn't an exact science because nobody's going to say, okay, in 32 days from now something is going to happen. 

So it is about negotiating this, and I think one of the things about being a carer and indeed a patient is actually learning to talk about this difficult issue of your diagnosis and what is likely to happen to you over time, and we're not very good at having these conversations. So I think you're right about that when you say we don't like talking about advanced care planning, we don't actually like talking about disease, serious illness, death, and dying, and I think that these are things that when you're in this situation, the conversations that will need to be had, and maybe it's not so much an immediate decision, but a decision that emerges over time as well.

Geoff Thomas: Yes.

Grant Law: Can you bring in a third party? Are there organizations out there that can come in and guide you through this or?

Geoff Thomas: There's no reason why not. I mean, what we're talking about here is the well-being of the... I like to call it well-being. The well-being of a collective. It's the well-being of the patient and understanding what's happening there. The carer, the family, the friendship network, and indeed the health professionals, and that brings in not only the medical people, but people in the motor neuron associations, in the case of that, Stroke SA in the case of stroke, or whatever the case might be, those people should be trained to have the discussion, Grant, not necessarily provide all the answers.

The real trick is to ask the right questions, assess where you think the patient and the carer are at, and so my suggestion would be to contact Jen Tieman. She knows about this and that “would you like me to contact her?” and mentioned your name and et cetera, which gives you a chance to discuss that case. So you become a facilitator of a service, tracking the progression, understanding what's going on, and I'll come back to that with regards to abstinent later, but tracking the progression, making those assessments and making sure the patient and the carer get the best information and support they can without feeling the need to have to provide it all yourself.

Grant Law: Well, I mean, that was one of the motivations for the establishment of CarerHelp is because that information wasn't readily available, and it's certainly for lay palliative care is that should be your first stop is to go to websites like carehelp.com.au, but we go now into, once that decision has been made, how important is it? You know when you've got a willing carer for that carer to be physically and mentally able to do the care work, what can carers do? What sort of questions should they be asking themselves about their physical abilities to do care? What can they expect?

Geoff Thomas: In the psychological capacity, I'd like to put a question to Jen if I may. One of the issues that I found when Mary was diagnosed and of course being with MND, no treatment, no cure, no hope, which made it easy in some respect. We said, well, let's get on and make the most of it, but it was quite lonely because all the attention by the profession is on the patient. The patient has the healthcare number, the carer doesn't. The network of friends sort of had difficulty accepting the diagnosis of the patient let alone think about how they might support the carers. So for a while you feel pretty much on your own.

Jennifer Tieman: I think it's a very hard place sometimes being a carer, and I think people also as carers themselves, tend to think about the person who is ill before themselves and I think in a way caring is over time, so you have to actually take care of yourself over time to do that, and I think that's not selfish. I think that's really important. I think health professionals, services, organizations, governments, are all starting to really acknowledge that carers are important in their own right, not just as something to do with the patient, because I think in essence they are doing something that's very important and very valuable not just for the person, but for the community as well and I think they tend to be invisible.

So one of the things we often talk about is why can't we say to somebody: “you're obviously looking after John or Mary or Peter, how can I help or what is it I can do to support you?” Or even just to acknowledge that someone is caring, because otherwise you can sort of feel that you do it, nobody sees it and you just keep on doing it, and you're not recognized, you're not acknowledged, you're not seen, and you're not sometimes given the sort of rights to actually be involved in decision-making at different times as well. So I think people are starting to really understand that now.

Geoff Thomas: What would be common be about I mean the psychological support. I mean, if you go to the clinic, somebody's watching the patient’s psychological state. I think that's important, but I think it's more important to understand where the carer is at.

Jennifer Tieman: And look, so some of the palliative care services now actually have specific programs for carers and that they actually work with the carers to assist their needs in not only information, but in supports connection to services, but also carers themselves may not be ready for information when they're at a clinic visit, and to be honest, that's partly why something like CarerHelp is incredibly important because it's there when you are willing to actually go and look at an issue or address it, and people have to have a readiness to actually be able to look at certain pieces of information too.

It's not quite straightforward step one, step two. People's information needs vary, people's emotional readiness to deal with things can vary as well, and being sufficiently confident to be able to talk with the people providing care, but also to talk to your family and friends and to acknowledge “help me” or to accept the offers of help that people will make because sometimes I think carers are so tied up with the patient, they forget their own needs, and a willingness to say: “yeah, it'd be great if you would come and help me because I need to get out and clear my own head”.

Geoff Thomas: Yes. That's right.

Grant Law: Well, one of the pieces of advice on CarerHelp is around developing an online calendar or if you're not as tech savvy even just on an old-fashioned calendar, printed calendar where you identify areas that are... You know, where maybe you need company or you need support, or you would like to go and do something, but you actually formalize it through a calendar. Is that something you might've done Geoff or something similar?

Geoff Thomas: Yes I did. Yeah, because of the friendship network Grant, the management difficulty I had frequently was suggesting to people that it probably wasn't an appropriate time to visit, and if they did 10 minutes only. Now that's pretty hard when they've been friends for 30 years, but no. Yes you need to have that because you do have your own life to live and other things outside of the carer role, which have to be done and yeah, so it's important to say right.

Grant Law: You've got to be a bit thick skinned, don't you? You've got to put your foot down because if you allow anyone to pop in whenever they fancy it, it's just [crosstalk 00:20:04], it's not good-

Geoff Thomas: Well, particularly towards the end of life when the patient may be suffering some cognitive difficulty and those sorts of things I mean, and it is difficult because the people want to visit and you know it's a hard discussion to have.

Grant Law: So it's got to work for the carer and the person who's being-

Geoff Thomas: Yeah. It's very difficult to say buzz off.

Grant Law: Yeah, but sometimes you have to.

Geoff Thomas: Yeah. Sometimes you have to.

Jennifer Tieman: I was going to say people use lots of practical things too. Like sometimes they'll put up signs on the door saying no visitors till five o'clock or practical things like that. The other thing is lots of people don't know how to help, particularly carers, so they'll say: “what can I do to help?” And perhaps we need to get better as a community saying: “how about I cook you three meals in a freezer”, or “how about I pick up the kids and take them for two hours so you have some time out”, or “how about I sit with somebody while you have a chance to go and watch a movie, or get your hair done, or whatever it is that's important to you?” But we need... You know, concrete things are often better than these “how can I help?”

Geoff Thomas: But please don't bring me 17 meals at once.

Jennifer Tieman: No. Not an issue of the freezer as well.

Grant Law: So that as you say is much more. You know, looking after the kids or making meals is adding just as much value as spending physical time with the person who's dying, stroking his or her arm, you know, which is what the default position is. And that's how you're meant to show your love and affection, but making a meal even though it's relatively more impersonal is just as impactful.

Jennifer Tieman: And I think sometimes even the practicals: mow the lawn, weed the garden, put the bins out. You know, there's lots of things and these are things we can do as neighbors, not just family members. And family members can step up and sort of support mum or dad or sister. You know they can say: look, I can't do this, but I (they might be living inter state), but I could handle finances. I could be part of the contact telephone list that's needed. I can organize different things to do. So there's lots of ways, and sometimes that's about negotiating those things in fairly concrete terms. You feel like a first class manager, caring.

Geoff Thomas: Yeah, that's right. You got to have too many balls in the air all at once. There is something which I will mention, which isn't often mentioned, is that is the importance of pets in this process. We had an old dog, we've still got him. He's 17 now, and the day Mary was diagnosed, he didn't leave her side, and he was always there. Be it a dog or a cat. I bought Mary a whole lot of decent birds for the aviary and she could sit out and watch them. Those sorts of things which are diversions. They're another source of love I suppose, and their support for you.

Grant Law: Even cats.

Geoff Thomas: Even cats.

Grant Law: Even cat.

Geoff Thomas: Well, not in my case, but... I like birds too much, but no. Pets are important. The only difficulty we had Grant, with Boof, our staffy, was we had to keep reminding him that he was in fact still a dog, which he sort of became very much part of the…

Jennifer Tieman: Part of the family.

Geoff Thomas: That's right, and-

Grant Law: Let me ask you as well Geoff, so in terms of looking after yourself and your sort of mental and physical well-being, what do you think you got right and if you... And I'm sure you don't want to go back into it again, but in the benefit of hindsight, what would you have done differently in terms of making sure that you got the respite, and you got your own time and were sort of caring under a condition of optimal health?

Geoff Thomas: That was... It wasn't too bad. Mary had the Boba form, which meant that she went to peg fairly early, but we used to cook the same meals, it's just that she'd take hers in different forms than we did-

Grant Law: That's the intravenous type-

Geoff Thomas: [crosstalk 00:24:32], the stomach tube and so we ate meals together as much as we could, but it was... In fact, if we talk about after death, I find the most difficult experience is cooking the evening meal and eating it on my own. That is the absolute pitch, or traveling on my own that's not too good either. But anyway, exercise is absolutely critical, and because you're caring, getting to the gym or whatever is difficult, and that's where sometimes a pet like a dog comes in handy because you can go for a walk, that's where neighbors and friends and family come in handy, they can do that while they're doing it. I think those things are reasonably obvious although frequently mismanaged. It's the psychological perspective that I get concerned most about, and I guess if I had my time over again, I would have developed a program of which you develop, with the right sort of expertise, whereby Mary and myself could monitor and condition how we were going, including sort of a mental condition. How were we sleeping? 

All of that stuff put us in charge of managing the condition, then you know what information you want, so you can go to CarerHelp and find the information or you can take that to the health professional at the clinic or whatever, and say, "I'm having trouble with this or with that”, or your GP or the motor neuron association. But we need to be monitoring that progress, I believe, in a structured way, and as Jen would know in terms of swallowing there's various signs in decline, in terms of sleep there's various signs, in terms of breathing there's various signs, and so you can track that progression yourself.

Jennifer Tieman: Yeah, and it is a very important thing both... And it can be quite confronting which is the other side of it as well if I'm honest, in the sense of if you see that deterioration is occurring then you might realize that change is occurring as well, and that can be quite concerning for both parties, but I think there's also a sense in understanding that staying as well as possible and optimizing where you are is really important. So that's about quality and making sure you're getting the most out of that, and that sense of ensuring that you've got time for yourself as a carer to stay well, that you are actually still able to do things together that you enjoy and obviously the family meal was very important to you and that loss was very important for you as well. So those chances of living are critical, and living as long and as well as possible is absolutely important, and therefore, I think trying to make sure that you keep both the person and the carer as well together as possible gives you the best opportunity to live well together.
Geoff Thomas:    I'm sure that's right, and the other thing that's important is in terms of monitoring and the like, is being a step in front of the game, and this is where not just the health professionals, but things like the associations and where it is at, how are you feeling about this and that, so that you are managing, you are anticipating the situation. You're not living there in fear and saying, God, I wonder what's going to happen next. What they all will do if it does? You say, well, we know that it's going to happen, it's a matter of time, and here's what I'll do when it does, and I need to start to get organized now.

Jennifer Tieman: Absolutely. I absolutely agree with that, and I think that sense of knowing what is likely to come at the rate at which you can comprehend that and manage that is really critical, and taking the periods when things are relatively quiet or calm to actually acquire knowledge for the next period can be actually very useful, and it is about being very organized in many ways. You mentioned advanced care plans. You know, have you organized finances, have all those basic practical issues? Do you have the equipment that you're going to need over time? Have you got the visitations organized if needed? Do you know what to do in an emergency? And have you talked about what you want if different things happen so that you're prepared, and as hard as it sounds, it is actually just part of providing that love and care right through to the end.
Grant Law:    Well, that's a good segment to move in into the administrative side of things, which is, I guess, sometimes a bit of a touchy subject. It could be tricky, and maybe the carer, in the case where the carer is not that the partner or the spouse of the individual, you're meddling, or you might feel that you're meddling in someone else's affairs, but that is just as important as providing the emotional care to the individual in making sure their affairs are in order.

Geoff Thomas: Yeah. Well, in the association we do have links with the financial planners and accountants and lawyers and the likes, so that people who don't have one we can say: “there you go”, and we can contact those people and say: “Jen is going to be ringing you up, the situation is this and this, you know, she lost her husband two years ago and so her aunty is caring for her, but she's dreadfully worried about…, you know, the family's a bit ordinary and they're split and she's worried sick about how she organizes their affairs”.

Grant Law: Well, that must be very important to the person being cared for. They want their affairs wrapped up and that might be a major source of anxiety for them.

Jennifer Tieman: I think that having affairs in order is one of those sort of unspoken things we don't talk about often enough, and you need to be doing it at all stages of life, because you don't know what's going to be around the corner, but when you are facing the reality of a terminal illness it becomes very important and so yes, it is things like advanced care plans. So do I know where I want to be cared for when I can no longer speak for myself? Have I got that written down? Is everybody on the same page? Because it's okay for you to have an idea of what you want as a patient, but if you haven't talked to the perso who's providing care maybe that's not going to work out so well.

Geoff Thomas: Or it comes right to the end and one of the family starts to object and really puts a cat amongst the pigeons and so you know …awful.

Jennifer Tieman: Very important, and also if you've got it documented and you're working with the health professionals, then you don't get into unexpected investigations because you want things to go smoothly. You want to know that the ambulance is not going to come if you don't want it to come, you want to know that care is going to proceed in the way that you wanted it to. You also want to make sure that you have your finances in order so if somebody does need to provide care that you've got money to do the elements that might be important. You do need to know if you are providing care, what would happen if I can't work? Do we have our finances in order?

It's a whole lot of really basic things. People end up still having to pay bills, even the mechanics is paying bills. You know it's quite useful for people who are providing daily hands-on care to not worry too much about paperwork, and the last thing you want to do is find out that the electricity has been cut off because nobody's paid the bill in the last three months because they've been so busy providing care and that's where understanding, setting up. If you've got a child who can manage all of that because you don't have the capacity to focus on it, use them to do it. Make sure you have sorted out the legals to do that. Make sure if you're able to get a carer's payment to sort out that as quickly as possible. You know maybe your super can contribute to some of the costs you're going to look at. Have you actually thought about a funeral? These are things that you need to sort of have in your mind because they will occur.

Grant Law: And even My Aged Care.

Jennifer Tieman: Absolutely.

Grant Law: If under the appropriate circumstances you would want to make sure that you get that application in for any care support under My Aged Care very early, and that's something a family member who is particularly good in administrative things, you know, that's something they could potentially do.

Jennifer Tieman: And I think the question of if there are services, there are community services, there are healthcare services, there are aged care services. So understanding those and actually having the paperwork, and the world is full of paperwork, and I'm really sorry to say it doesn't stop because you're a carer, but there are services. So you need to actually know how to do that, and that goes back to conversations. Talk to your healthcare team, talk about how can we organize this? And often there are people if... You know if you visit a hospital there's often a social worker who can help to help you get all the appropriate documents together as well.

Grant Law: It sounds to me that being the carer is not necessarily just the job for the most compassionate person, but certainly the most organized person, or you at least have to have a good organizational skills, but then-

Geoff Thomas: You're the case manager. 

Jennifer Tieman: Yes.

Grant Law: That's right.

Geoff Thomas: You don't have to do everything, but you have to understand what needs to be done and make sure it gets done. As an interesting aside Grant, one of the things I did with the telephone company and the electricity company was I rang them and said, "My wife is so-and-so, I'm the carer. We are struggling a bit. Make a note on our account that this is the circumstances." And they said, “gee, we wish more people would do that because, you know, when it comes to cutting the power off thing, hang on, hang on, this is a special case, so let's ring them up and see how they're going. See if we can extend the wall or do something.” So they become part of the management and they will do that, but not if you don't know.

Jennifer Tieman: Yep. Even talk to your bank manager because, you know, when somebody dies that can be a matter as to how do you have enough money and not freezing accounts. So as you know, the practicalities are important.

Grant Law: And even organizations like Centrelink may-

Geoff Thomas:  Oh yeah.

Jennifer Tieman: [crosstalk 00:36:02]. Absolutely.

Grant Law: Can offer advice and can send a lot of support.

Geoff Thomas: There is no shortage when you can talk about human dissociation or any of the... There's no shortage of support and advice. The trick is, getting your ducks in a row and knowing what you need to manage, and covering off. I have an interesting document which I've shared with many people and it came from Harrison's funeral…Did Mary's... And they have this document which is a checklist, and by hell, it’s good. It's got about 25 things on it that once your partner goes, you need to organize, and I said... So I go to the association, that is part of our kit now… So if we've got to do what Jen's talking about, here is a list, tick them off. You got them organized.

Grant Law: Well, that's certainly where CarerHelp comes in because one of the biggest aspects of carerhelp.com.au is the list of lists. 

Jennifer Tieman: Absolutely.

Grant Law: And all of the checklist, because that's really what it is about, and it covers everything from finance through to the care side of things and knowing that if the person you care for requires a special bed for example, a special piece of equipment, that's something you've got to apply for. It doesn't just arrive on the day that you need it. You've got to develop a schedule of priorities, don't you?

Geoff Thomas: That’s right. And I think the great thing about CarerHelp, the very impressive thing is that it doesn't instruct you what to do. It guides you through a logical process section by section, issue by issue, as what to do, and if it can't answer the issues, it has referrals to somebody that can, and I don't reckon you can get a hell of a lot better service than that. Yeah, personal care is important in some respects and always will be, but information sources that are easy to navigate are pretty damn good too, and this is where I think CarerHelp is different. There is no shortage of information out there about MND, stroke, whatever you like, the net’s flooded with it. What we don't have is easy ways to navigate and find out where you get the precise information that you want in a logical manner.

Grant Law: And as a carer how important is it that you've got to go out and literally request information? So you're working with maybe a medical care team covering a variety of disciplines where you've really got to take control, don't you, and ensure you understand what is to come and that you're engaging very qualitatively with all of those providers to make sure that you see the whole picture.

Jennifer Tieman: And I think Geoff's point about as a carer you're often a case manager as to what's happening is really true, and I think that means, in essence your thinking of all of the things now and into the future, and you're not doing it by yourself, you are working with the team to do it, but you have to be organized to do it, and I think some of those things are really important and they just need to be in place from day one. So from my point of view you're talking about lists, there are some of those other lists I'd like to add. I think there are a couple of things that are really critical. You need an emergency plan almost from day one. What happens if something goes wrong? Who do I contact? How do we get there? All of those things. So that you're quite clear on how to do that.

Geoff Thomas: Including the carer.

Jennifer Tieman: Absolutely.

Geoff Thomas: What happens if the carer falls over?

Jennifer Tieman: Absolutely. I think that's one of the biggest emergencies that can occur in this is: If the carer breaks a hip, what happens? All of these plans go out the window and you've got two people then affected. The other one I think is a straightforward contact list, and that contact list has to be one of the things over time when you care you'll actually get this list of people associated with you, and you've just got to figure out how do you manage all of these? Which ones are critical? And then there's all your family contacts as well and so there's a sense in which you can spend a lot of time on your phone just trying to keep everybody up to date. So trying to figure out ways to manage that is absolutely critical because in the end you don't want to be meeting everybody else's needs, you need to meet your needs and the needs of the person you're caring for, and then actually you need to manage everybody else's intersection with you, and I think you were talking about that earlier.

Geoff Thomas: Yeah. I had a list of about well over a hundred and I sent out the instruction, don't call me because I probably won't answer it because I'm busy. I will give you at least a monthly update and if something accelerate alarmingly in the meantime, an earlier update, but I will give you an update every month even if it says nothing much has changed and I'm doing fine and Mary was disappointed Melbourne didn't beat Geelong last night or something like that, and you just squirt that around so everybody knows.

Grant Law: But did you get any kickback from that? Was someone offended by that and said, well, you know that's not how we saw things happening? Was there any kickback from it?

Geoff Thomas: It didn't stop people visiting because I sent them another email saying that you're very special, so if you would like to visit, that would be great. Mary was great in Bible study and that sort of thing. So those sorts of groups just kept coming in, and right towards the end when she couldn't speak, somebody else took control of the group but she was still part of it and all of that sort of thing. But yeah, people feel a need, a concern that they should contact you to see how it's going, and that's lovely, but it's a pain in the neck when you're up to your eye balls in caring.

Grant Law: It's never at the right time, but just going back to what you were saying Jen about the carer making sure that he or she doesn't injure him or herself. Is there a backup plan? Do we have Carer B? Do we have a B team? Is that one of the things you would recommend? How do you counter that?

Jennifer Tieman: I actually think the carer is a carer or the primary carer, and I think we put burdens on people by saying that they're the only carer, and I think what we need to do is have the primary carer, but then there should really be a carer team or a carer network so that people do talk about it. So if something happens to you, can your son step in? Do you have a next door neighbor? So in those critical moments, like if you do need to go to the dentist and you suddenly find something's gone really wrong and you're going to be in the chair for two hours not for 30 minutes, that you can contact someone to say can you follow up on something along those lines? I think that people can have a car accident and often being under stress, you're more likely to have some form of accident.

So actually having had a discussion with other people in the family or in the community is really critical in these elements and that's part of that emergency planning. It's not just about if something happens to the patient, it's about if something happens to the carer themselves as well, because you might get sick, you might get flu, you might get pneumonia. The likelihood is you're going to be under stress and your body will react to that as well. So taking care of yourself is important, having a whole team around you is really important, not being afraid to ask for help is important, accepting offers for help is important, and often we are really bad at that stuff so you know this is a learning experience as well, and people need to get quite concrete. So if you're engaging often, say, offer something specific. I can come round on Thursday evening, I'm going to play cards, why don't you go out to the movies? And my wife wants to go with you. So it's more than just, how can I help? Which is another thing to think about as a carer.

Geoff Thomas: And I think the other... Yeah, having an emergency plan is important. Having a communication which alerts them to the emergency is important, and for the last six months... I suppose, last 12 months that Mary had an alarm, and the last six months I got an alarm. Then I thought there's not much good, you know, if Mary pressed an error alarm I fell flat on my face down the back yard or I've had an accident somewhere or whatever. I need an alarm that I can press which goes to my son, then it goes to the next door neighbor, and then it goes to somebody else, and if all else fails it goes to the ambulance.

Jennifer Tieman: That's really smart.

Grant Law: Absolutely. Geoff, I mean, obviously caring for your wife with a disease like MND is not something anyone would volunteer for, but did you ever get to the point where you needed a break, or you just needed to vent and if you did, what did you do? How did you handle that? You know this is really for carers out there who may just be feeling they're managing generally, but the time comes where you just think this is just too hard.

Geoff Thomas: Yup. I can imagine that happening. It didn't happen in my case. Interestingly there are plenty of offers of, you can go away on a respite weekend or anything else, and Mary even used to say, "Why don't you go?" But the caring is a complex process and you got to get every bit of it right, and I knew that if I went away for that weekend, Grant, I wouldn't relax any way, I'd only worry about how Mary was doing so I might as well stay at home, and we get her in the wheelchair and we go for lots of long walks and do it that way. So everybody to their own. When I used to say to her, "Look, thanks for that support but I think I'll just stay at home and we'll spend the time walking together." There was a look of relief on her face.

See, yeah. And this is one of the other issues. You know people say you get care, you can come into the home. Oh, you need support, you needed care. Well, the difficulty is you get somebody, they're often agency people. They're different people each time, and they say, well, we'll be there at nine o'clock to shower and toilet Mary and give her breakfast and then come back at five o'clock to get her ready for bed. It was only a few things wrong with it, right. One was Mary needed to go to the toilet before nine o'clock and it's a long time from six until nine, and she didn't like other people showering her without any right?

Grant Law: Mm-hmm (affirmative).

Geoff Thomas: She was quite unreasonable really Grant, that she needed to go to the toilet during the day when the carer wasn't there, how unreasonable is that? And Mary never went to bed before 10 o'clock in her life, so getting her ready for bed at five o'clock would cause all sorts of problems. So those systems really don't work, or they certainly didn't work for us and I haven't heard too many people where they do work for. You’re better off to get a house cleaner, or get somebody to do the garden or do something to take the load off.

Grant Law: And is there a role for GP's? I think, you know, once you get that terminal diagnosis a lot of people might think that it’s past the point of the GP, but GP still can play a role can't they in terms of supporting a carer?

Jennifer Tieman: Oh, yes. Look, and a lot of people... The GP will provide care for somebody through to the end of life and they may do that alone because their needs are not sufficiently great that they need a specialist palliative care team, or they can work with the specialist palliative care team, and often the GP has a great advantage of knowing the patient and the family for a longer period, and so that's more comfortable. They have a context of who they are, how that works, and that enables them to talk about things that say, you know, could your kids come around? Can they do that? Have you got something figured out? What would happen if? Or how are you going because you might also be their patient as well, rather than just the carers? So there's a sense in which they can be a really important part of the team.

Geoff Thomas: One is reminded Jen, of the old country GP that used to stay for 10 years, you know, and became part of the family, and you had GPs that have had a long association who can certainly provide that, and they're an important point of contact for things like the support associations because the patient mightn't have an appointment with the clinic for six weeks, but the MND advisor thinks it's a long time so they contact the GP. The GP says look, let me talk to so-and-so and they fix it.

Jennifer Tieman: The other thing is that the GP can have the relationship with a carer because in essence they are often their patient too. So they can ask things like, how are you sleeping? You know, what's going on in your life? Are you getting a chance to get some exercise? Or I see that you look like you're really tired or your blood pressure's up, so that they can actually take a different view of the carer-

Geoff Thomas: They manage you.

Jennifer Tieman: ... and support the carer. Yeah.

Geoff Thomas: Yeah.

Grant Law: And I think it's obviously very important as well that when you are dealing with your GP or any health professionals that you go in armed and ready and prepared with a list of your own questions so that you make as much use of the time as possible.

Jennifer Tieman: Absolutely, and that you're open to conversation about it, and so often carers will say, look, I can't worry about that because I'm worried about John or Mary or Peter. And there's a sense of which sometimes the GP can say, Yeah, but you need to take care of yourself too because you can pay a long-term health cost associated personally with caring if you didn’t take care of yourself.

Grant Law: Well look, we're going to wrap up with a bit of an elevator pitch, all right. So this is, if you were in an elevator Geoff, with a patient who just revealed to you that he or she is to start a caring for someone who is terminally ill, what advice would you give them in that short space of time?

Geoff Thomas: How many floors are we going?

Grant Law: Not the empire state building, maybe a building in Adelaide.

Geoff Thomas: So we’re going from the mezzanine…Grant Law’s office is in the Mezzanine at 33 King William Street down to ground floor.

Grant Law: Maybe I'll give you an extra four floors, how's that?

Geoff Thomas: Make sure you look after yourself.

Grant Law: Fantastic. And that covers mental and-

Geoff Thomas: Everything.

Grant Law: ... physical wellbeing.

Geoff Thomas: Everything.

Grant Law: Jen?

Jennifer Tieman: I would totally agree. Take care of yourself, don't be afraid to ask questions and don't be afraid to say I need help.

Geoff Thomas: Yup.

Grant Law: Well, thank you to both of you for your time today. I think the best thing that any lay or family palliative carer can do is go on to carerhelp.com.au, access all of those videos there. There's videos from academics, clinicians, health professionals as well as carers themselves. So you can actually hear from people who have gone through this process as an everyday Australian and make use of the myriad of fact sheets, information advice, checklists, you name it, that's on there and I guess best of luck. It's something we're all going to go through at some point, at least once in our lifetime, and thanks to CarerHelp and the team behind it for establishing it.

Geoff Thomas: Thank you.

Jennifer Tieman: Thanks Grant.