Caregiving and ambiguous loss with Linda Rowley

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.

Jess: This is a trigger warning. In this episode, we are discussing ambiguous grief for carers that may be distressing for some people. If you need assistance, please reach out to Lifeline on 13 11 14 or Beyond Blue for online and telephone support.

Jodi: Hello and welcome to the MS Plus podcast series. My name is Jodi Haartsen and today Jess and I are speaking with Linda. I met Linda around about two years ago when she was engaged with MS Plus as a consultant to help us develop our MS Plus carer strategy. Through that time, we worked together, well Linda did most of the work, I could see Linda's passion for supporting mental health and well being of lots of different people across all different types of arenas.

So today I'm really, really excited and looking forward to learning more from Linda about loss and grief. Many people with MS and carers are very familiar with concepts of loss and today we're going to dig a little bit deeper into loss from the perspective of the families and friends and carers and try to understand and give a bit of guidance on how to maintain mental health and well being living with grief and loss.

So welcome Linda. It was wonderful to work with you and learn so much from you and from the carers that we worked with. But also, great to have you with us today. So, thank you very much for joining us.

Linda: Thanks so much, Jodi. Can I say it was equally a delight to work with you and I'm very honored to be a guest on your podcast today.

Jodi: So, let's get straight into it, Linda. What actually is ambiguous loss and how is it different from other losses? Can you tell me a bit about that?

Linda: Yeah, great question and good place to start.

So, the term ambiguous loss was coined by researcher Dr. Pauline Boss back in the late 1970s. So, it's actually, as a term been around quite a long time. But it is a term that many of us are quite unfamiliar with. So ambiguous loss is really when a person experiences a profound sense of sadness or sense of loss that's not associated with the death of a person or a loved one.

So, there's been a rupture in the relationship or a change in the situation or circumstance between two people but it's not when someone has died. So, there are two types of ambiguous loss. The first type is when a person is no longer with us physically, so they're no longer near us but they are still with us emotionally.

We still have an emotional connection to the person, so we keep them in our hearts and minds. And some everyday examples of that can be for instance, if someone goes into residential care, so you might have had a couple living together and one of them has gone into residential care. The one who's still at home might experience a sense of loss because they're no longer physically with them.

And they're still in their heart and mind. Other examples would be things like when people immigrate or someone moves to the other side of the country, for example. Things like adoption also, and when there's a relationship breakdown, so people get divorced those sorts of things. So, they're everyday examples.

Some catastrophic examples or exceptional examples would be where someone is perhaps kidnapped or missing in action. So, they're no longer with us physically but we still have that emotional connection.

So, the second type of ambiguous loss, which is the type that I think might be most relevant and relatable for carers, the people with MS perhaps, is when the person is still with us physically.

So, we still have that relationship with them, but they're no longer as psychologically present or as emotionally present in the relationship itself. So, some examples of that might be things like if someone has an acquired brain injury or a stroke so they're no longer able to have that same sense of emotional connection with the person.

It could also be someone who has severe mental illness for instance. You can imagine if someone experiences depression, we don't have that same sense of emotional connection with them.

So, the person is still with us physically but we're missing that sense of emotional connection that we once had with them. So, something has changed in the relationship and we no longer feel that sense of emotional Intimacy.

Jodi: Thanks, Linda. it was just such a common theme when I was working in the MS clinic.

And I vividly remember one lady her husband had had MS for a long time and she said, I still love my husband deeply, but I miss the man he was. I miss that person that he was and it was like it was such a big thing to offload for her and I thought we probably don't talk about it as much because I think carers seem to feel a little bit guilty about it when people change, often with the diagnosis of, it changes you in many cases.

MS changes you, just the diagnosis itself. So, in your experience, is this ambiguous loss under talked about, if you like a topic that's brought up enough?

Linda: Oh, absolutely it is. And I think it's important to remember that ambiguous loss is a normal ordinary typical grief response to a situation that's complex and difficult.

And often quite painful and ambiguous loss is viewed in a stress model. So, it's not saying there's something, wrong with you as a person, so to speak, if you experience ambiguous loss, it's a normal reaction to a situation that is really complex and difficult. And you're right, Jodi, we often don't talk about it because unlike grief or bereavement when someone dies.

As a society, we have rituals around that that are culturally influenced. So, depending on our culture, we will have a funeral or a memorial or we will sit shiver or whatever it happens to be for us in our culture. But that's recognized and acknowledged.

Our grief is recognized and acknowledged by others and that helps the grieving. process. Whereas with ambiguous loss it's not validated by others often. It's not socially validated. Sometimes there can be a sense of stigma. So if you're a carer for a person who has a significant disability or maybe their behavior has changed as a result of the diagnosis or the condition, then sometimes people avoid us, right?

So, there's a stigma that can be associated with that as well. And I think that, when we're a carer too, often there's not a definitive point at which we identify ourselves as a carer. Often becoming a carer can sometimes be A kind of slow and organic process. And certainly, the carers that I've worked with and I'm not sure if it's true for carers who listen to the podcast, is that sometimes it can take a while for that kind of realization that, oh, actually I am a carer.

So, there's no point at which we then have rituals or we validate that sense of loss that might go along with being a carer.

Jodi: Yeah. there was often when people did talk about it, a really strong sense of guilt. Like a really strong sense of guilt saying, it's not me who's the person who's got this diagnosis so therefore I shouldn't. And I think that was sort of another barrier to having those conversations about it to say, that sense of guilt. Is that something that you have found as well?

Linda: Yeah, absolutely. It is, Jodi. I think there is a sense of guilt.

And I think it's important to remember there's no blame or shame when it comes to ambiguous loss. So, Kerry Greenwood, who is one of my favourite authors she writes the Miss Fisher murder mysteries for people who are familiar with them. One of the quotes she had in a recent book was, Life is full of unjust punishments and undeserved rewards.

And I think that is just so true. And I think that we can't control what life does. Life is messy and complicated and rarely what we predict it will be. And so whilst we might experience a sense of guilt, it's really the situation that's complicated and complex that we're struggling with.

It's not, the person or it's not that we are attributing kind of blame to anyone in that kind of relationship.

Jodi: In my reading it seems a bit of a transition between the terms ambiguous loss and ambiguous grief. So, is there a difference? How do those two interrelate what's that about?

Linda: Yeah, so I think they're both used interchangeably in terms of the ambiguous loss and the ambiguous grief. The kind of the key thing with ambiguous loss or ambiguous grief is that there's no closure. So, there's constantly this tension between the person being present in some way and being absent from the relationship in another way.

So, there's this constant tension between the two. And unlike when a person dies and I don't always like the, I don't think we can get closure on a life, right? So, but when a person dies there's a certainty about that. With ambiguous loss or ambiguous grief there's no certainty around the continuation of the relationship and what that will look like.

So, we mightn't know from one day to the next or one month to the next what that person will be alike in terms of their functionality and therefore perhaps what our relationship might look like going forward as well. So, there's that sense of lack of clarity about elements of the relationship and what might occur in the future.

Jess: And Linda, when we're talking about ambiguous loss, does it always have to be, that there's a really big loss or can it be smaller things? Like for instance, you know if there's a couple and one has received a diagnosis and now, they've done an entire life overhaul, so they may be more focused on things like exercise and their diet and things like that.

And it could just be maybe as simple as the other person is grieving that change of focus in their sort of shared lifestyle at home.

Linda: Oh, absolutely. Jess, I think you are absolutely right. And there will be clear losses and there will be unclear losses. So, for instance, a clear loss might be that the person, either the person with the diagnosis or their carer might have given up work or reduced their working hours as a result of the diagnosis and caring responsibilities.

And so that can be a clear loss. A clear loss could be a financial loss, right? We're no longer kind of bringing in that same level of income. But an unclear loss could also be the loss of the person's hope or their career aspirations maybe they had an aspiration to achieve a certain level within a career and now that's no longer possible for them at the moment.

So, you're right. There can be big losses or what we would call big losses and small or everyday ones. And they can be clear and unclear. And sometimes we mightn't even realize what we're feeling a sense of loss about until we have the opportunity to kind of really talk through it and to explore it.

Because often diagnoses or becoming a carer does impact multiple facets of our lives.

Jodi: Yeah, I loved the clear and unclear because it all doesn't really seem that clear at that time of being nearly diagnosed. But it sort of felt like it was hanging around, this big loss of there was this big loss and there was what, it was all hanging around.

And then, people who have the diagnosis and those who were supporting them, their friends and family, sort of in the zone of getting through the diagnosis, getting treatment. The first year was all about this zone of kind of achieving things. And then afterwards the sense of loss started to become clear.

When there is that lack of clarity about what you've lost, you're not quite sure what you've lost. How do you work with that? How do you come to see what it is that you've lost? And is that a really important step in coming to terms with it or finding that mental health and wellbeing whilst you're experiencing that loss?

Linda: Absolutely. So, I think acknowledging the loss is really important. So being able to become clear about what it is that you're feeling that sense of loss about. Ambiguous loss is not a one and done thing. So, I think ambiguous loss is something that can last sometimes a lifetime. And the loss that you feel when someone's newly diagnosed might be very different to some of the losses that you experience subsequently as the person with MS and their journey changes.

So, there will be things along the lifespan that might trigger a sense of ambiguous loss. And equally, not everyone will experience ambiguous loss. It's not a foregone conclusion and what we experience loss about will be different for each and every person.

It's not a linear trajectory in terms of what we all experience. It's a really kind of individualized experience and journey I guess. So, I think though acknowledging, so being able to recognize what it is you feel that sense of loss about and then being able to acknowledge that is really important.

Dr. Pauline Boss has six guidelines for living with ambiguous loss. Because that's an acknowledgement that it's not just something that you're going to get over, so to speak. But it is something that won't always be there on a consistent basis.

We often talk about grief coming in waves. The terminology with ambiguous loss is that it oscillates. So, if you think about a cooling fan that kind of oscillates, goes backwards and forwards. that can be a similar thing with the experience of ambiguous loss.

The guidelines can be implemented in any order. There's not a specific linear sequence. One of the ones that I like to start with is meaning. And so, this is our ability to find meaning what's happened. meaning has three components. one, is about having a sense of significance or feeling like we matter.

The second one is about a sense of coherence so that there's a narrative or our story to our life. And the third and final element is having a sense of purpose. So, finding a purpose in our lives and in the situation that we're presented with.

Another one is around discovering new hope. So, in terms of discovering new hope, there is an element of that, that's about acknowledging what we've lost. So, being able to identify it, being able to acknowledge it and then go, well okay, given this is the situation now, what are my hopes now going into the future?

Because as human beings, we don't ever just have one hope, we have a multitude of hopes. with every new situation we can still develop hopes around that within the context of our evolving and changing situation.

Jodi: I read that hope was a muscle to be flexed and worked on how do you therefore get hope? How do you work towards being a more hopeful person?

Linda: Yeah, and I think that's right that hope can be developed and resilience as well. So often we have this sense that you're either, born with resilience or you're not. But the research at the moment tells us that that's not true, that anybody can develop resilience and also hope.

So, hope theory would tell us that it's really about being able to identify a goal. So, something that we want to work towards and it doesn't need to be big hairy and audacious. It can, you know, be just a simple goal and to work out different ways of being able to get there. So, to think about, what might be the obstacles?

So, both the internal obstacles so that could be a lack of motivation or willpower or those sorts of things, as well as the external barriers that we might come up against. And then being able to work out different pathways to achieve that goal. So, within kind of positive psychology, hope is Seen as basically a goal setting sort of framework.

Really setting those kind of small goals, those small steps, we then get a sense of efficacy around we can do that. You know, we have ticked that off. What can we go onto next? So, I really think it's about setting those realistic, small goals. And then being able to progressively work towards bigger goals.

Jodi: It seems to be that they often talk about mastery being able to achieve something but mastering something as can be very hopeful. The other thing that you mentioned was finding meaning they talk about art and the use of art to find meaning. What's your experience been with people living with ambiguous loss and the importance of art and nature?

Linda: Absolutely, Jodi. I think both art and nature are really important when it comes to looking at how we can live a good life with ambiguous loss. Art, of course, can take many forms. It can be painting or visual arts, which can help us really to express our emotions.

It can be through music and also through writing as well. And we know writing is a great way to, again you know work through our thoughts develop insights and have meaning as well that can be really helpful in terms of adjusting to a new life situation and also experiencing ambiguous loss.

When it comes to nature as nature is one of my favorite approaches and something that I'm really quite passionate about. And I do facilitate a, what we're now calling a Carer Camino, which is a four day walk in nature. And I think natures so important. Because from a biological perspective we have a connection with nature and nature can be anything from our veggie garden in the backyard through to the wilderness.

So, connecting with nature, can just be noticing the nature around you. So everyday nature that you engage with, whether that's, you know your local civic park or community garden, but it's really about. Connecting, so having that sense of connection and also noticing how you feel when you're in nature as well.

Nature has many benefits not only to our physical health, but also to our mental health as well. It has a calming effect. It has a restorative effect. So, if we're feeling overwhelmed or feeling stressed then nature can help us to restore our cognitive capacity. So just to feel calmer and also to feel more present and whether that's feeling the sun on your skin or noticing the crackle of the leaves, underfoot, or the sound of the bird call.

It helps bring us back to the present moment. And nature's also one of the environments where we can experience awe. So that sense of awe and that sense of wonder. Which we know are positive emotions that can not only feel good in the moment but can also help us to build our resilience over time as well.

So, when we do face those challenging situations, we've got more of a well of resources to draw from during that time. If you can't get outside, if it's a rainy day or there are other things stopping you from venturing out, then you can still experience the benefits of nature indoors. And that might be as simple as playing the sound of bird call or the ocean waves in the background while you're going through your daily activities.

You're tidying up the lounge room, you're cooking dinner. And it can also be playing a visual. So, we're so lucky these days. We have so many things freely available to us. So, it might be a video of nature that you source from YouTube, right? So, it doesn't cost anything. And you might be just having that on a monitor, your TV screen, if you've got a smart TV in the background when you're having your cup of tea.

So, there are so many ways to engage with nature and to enjoy the benefits of nature.

Jodi: Tell me about those six principles and how we can help people work through or not get stuck in loss and grief.

Linda: So, we've talked about finding meaning and discovering new hope. They're two of the guidelines. And we've also talked a little bit about adjusting mastery. So, the remaining three guidelines one's about reconstructing identity. So, if we receive a diagnosis or we are caring for somebody with a diagnosis that can sometimes impact our identity, especially if there's other changes in our life as a result.

So, we're no longer working or not working in the way we thought we would. So being able to go back to our values. So, what's important to us, how do we live our values on a day to day basis? How we identify our strengths, can certainly help us in terms of reconstructing an identity for ourselves as well in terms of that loss.

Another one is revising attachment. So, if there's been changes in the relationship. It might be about looking at how we can accept and develop that sense of attachment that we have with the person, with our loved one. And it might also be appreciating that our loved one can no longer meet a specific need we might have. So, for instance I know mothers of adult children with severe mental illness, for instance so a simple example would be a mother and daughter. They don't have the traditional or the usual relationship in terms of not being able to go out for lunch together and do those sorts of things.

So, they might develop relationships with younger females and that might be through mentoring, or it might be employing younger women in a business. So, some of those sorts of things, it doesn't replace the relationship by any way shape or form.

And I'm not saying that we would ever try to do that. But if there's a need around having that sort of relationship with a younger female person. Then there might be other ways to do that, whether it's through mentoring or those sorts of things. So, thinking about, the attachment that you have with the person existing, and if there are needs kind of outside of that that are not being met. Then how can you perhaps fulfill those in other ways that are still healthy for everyone involved and also helpful as well.

So that's the revising attachment. And then the remaining guideline is around normalising ambivalence and I And one of the things they suggest is not having what we would call either or thinking.

So, thinking I'm either a daughter or a carer or I'm a husband or a carer, those sorts of things. But it's about being able to appreciate and to have what we call both and thinking. So, I'm both a daughter and a carer. And that might change my relationship with my mom or my parent, might change on a day to day, week by week basis just depending on what they need at that time.

So, it's really about normalizing the range of emotions that you might experience as a carer.

Jess: Linda, one thing that's sort of coming up for me as we talk about it, words like loss and grief are typically viewed very negatively and we associate them with, bad things.

So how do you think, carers or people supporting those with a diagnosis can talk about this in their relationship, their partnership, their friendship, without that person then feeling guilty or feeling like they're a bad person because they are the one with the diagnosis.

Linda: And I think that's so important Jess, and I think it comes back to the focus on the situation. So, the situation being complex and painful and also having no blame. It's not the person's fault that they have a diagnosis. So, it's really about how do we maintain our relationship and the ability to talk through these things with each other in relation to the situation. So not in a way that places blame or shame or guilt on either party in the relationship. And Dr. Boss talks about the one thing people who experience ambiguous loss need is that sense of human connection. And we know through surveys and research that that's often one thing that can fall by the wayside for carers.

Carers can feel, you know socially isolated or that they lose some of those social connections. So, I think that's really important as well, that people experiencing ambiguous loss have others outside of their relationship that they can also talk to as well and seek support from. And whether that's through support groups or people developing relationships with people that have a similar lived experience as a society, we're now recognizing that kind of sense of loneliness and social disconnection more as well.

for instance, grief line has recently started the G'day line. And that's a loneliness support for people. So, anyone over the age of 50 that lives in Australia would be eligible for that. There's also Social Health Australia that really look to reduce social isolation as well.

So, I think it's both looking at kind of those formal supports that people can access as well as those informal supports, friends, family other people that have a similar experience as well. But that sense of kind of human connection is so important.

Jodi: I like the 'G'day line' because I think one of the things that we don't do enough is just offload.

It can be so relieving just to offload and even offload in a messy way that I'm not quite sure what I'm offloading, but I am just, I just need to talk. And it's amazing how, much that can take the burden off. How much lighter you can feel and how much you solve the problem while you're talking about it.

And to a person at the end of the line who's just there to say good day is even more perfect because they're not invested You just talking about it. That's really what I'm missing. I thought it was this loss, but actually this is what I'm feeling is really gone.

So that sort of bring me to one of my questions, which is I sort of felt like some people just got stuck in it and weren't able to sort of, to move through it or weren't able to find a way to see clearly what was going on or what the loss was about.

So, what's your sort of experience with that and how would you help people move through that?

Linda: Yeah, so for some people grief or that sense of loss doesn't lessen over time. So, for many people it would, and that would be what we would expect. If the sense of loss is significantly disrupting someone's life, so if it makes them feel like it's difficult to do anything, it's difficult to socialise, having problems sleeping, changes to the way they eat, so overeating, under eating or really intense and ongoing emotions that cause distress.

So, anger sadness or numbness, anxiety. Then they might be indications that people are stuck and that they might benefit from more professional help. So, if that's the case, then reaching out to Grief line or to Grief Australia for some more formal support could be helpful.

For instance, I run workshops on how developing skills so based on wellbeing science and positive psychology, what are some tools that might be helpful for people and being able to live better with ambiguous loss as well. So, if people are feeling like their kind of feelings and emotions around that sense of loss are getting in the way of their everyday life then I think it's important for people to seek help.

And of course, if people are in crisis, then we would always encourage people to ring 000, or to ring Lifeline or one of those other crisis lines that might be most helpful for them at that time.

Jodi: Thanks. Excellent suggestions. I always thought coaching was a bit like a personal trainer for your heart and spirit. And we need to invest equal amount of energy in personal training for our heart and spirit. And yeah, in my experience coaching can be a really good way of, of helping you kind of navigate that. Not everyone felt that they needed a psychologist, but just felt they wanted to work through something and coaching can be a really effective way of doing that.

Linda: Yeah, absolutely. And I think sometimes, again it's about identifying what you need and also looking at what is going to be most helpful for you. It goes back to everybody knows themselves best. So, there's a suite of services or supports that might be available. So, it's working out what's going to work best for you at any point in time.

And you might find one thing works at one time and then down the track, you might try something else.

Jodi: Yeah. And it starts with that validation and acknowledgement. And I hope that our listeners have learnt some things about ambiguous loss today that helps them validate that. And I really like the way you say, Linda, living well, living well with ambiguous loss and that's possible and achievable. It might take some work, but well worth it with high dividends.

Linda: Absolutely. And I think the other key thing is to have self-compassion.

As well as compassion for others. And self-compassion looks like being kind to yourself and also being mindful. So not getting stuck in those emotions and having that shared sense of common humanity. Often when we struggle or when we experience distress, we tend to think that it's just us. It only happens to me, everybody else seems to be coping okay or having a perfect life or whatever it happens to be. But that's very often not the case. So, it is really about having that sense that I can't be the only person that's ever experienced this, right? So how can I reach out to others in a way that shares that experience so that I don't feel so isolated as well?

So that sense of self compassion I think is really important and that's part of self-care as a carer as well. Because we can't give to others if we don't have anything left ourselves.

Jess: And this might even be the first time that someone has a name for the feeling that they've had and feeling like, I don't have to be ashamed I'm not this awful person for feeling this.

It's, it's perfectly normal.

Linda: Absolutely. Yep. And I think that, normalizing it is such a big part and really some people can just take a big breath when they understand that it is a normal part of life and it is part of a shared human experience. It's not that there's anything wrong with me or that I'm fallible whatever it happens to be.

It's just a part of being human.

Jodi: Well, I think that's a perfect place to finish the podcast on the note that it's just a part of being human and so thank you so much for sharing your insights, Linda. That was just fantastic. thank you for your time.

Linda: Thanks so much, Jodi. Thanks Jess.

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