Ep 12 - Different Forms Of Grief & Some Helpful Tools

Your world has turned topsy turvy. This episode provides are some key actions to help you stay the right way up. 
An interview with Stefan Petersohn, a counsellor who works alongside both young people and with those dealing with grief. 

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Transcript

 Ep 12: Different forms of Grief and some helpful tools

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks or months of life. 

Our episode today is Different forms of Grief and some helpful tools

 Denise
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today I'll be talking with Stefan Petersohn, a counsellor who works with both young people and with grief. Hi, Stefan.

Stefan
Kia Ora

Denise
Stefan, we're going to talk about the different types of loss and some of the tools that can be used to help manage that loss. And you and I have talked before about the Te Whare Tapa Wha which is a model that's very central to hospice and palliative care in New Zealand. Do you want to talk a wee bit about that?

Stefan
Te Whare Tapa Wha is a Maori model about health and about a holistic view of health. Just imagine a house with four walls. Yeah, and one wall represents our feelings, our emotions, our joys of life, happiness, also our, our fears, our anxieties, our sadness. Another wall represents the way we relate to family, to whanau, the way we relate socially. Yeah, the connections we have, and the support we provide to each other. The third wall represents our spiritual being. And spiritual being can be religious, but spiritual being means, in general, our identity, the way we are seen and the way we see ourselves. And the fourth wall is our physical health. That might be physical pain. There might be also the ability to go for a walk or for a swim. When we experience a loss, it's not just one wall. Let's say we experience a physical loss. We get a diagnosis, a life ending diagnosis. It's not just a physical impact on the house, yeah. The other three walls they also tilt, yeah, and they are impacted. We may have a different connection to our family, or our friends, therefore. We also may experience anger or confusion as an emotional response. And the way we connect on a spiritual sense may also change. So one impact changes the other walls of the house. The experience of loss is always seen holistically within hospice, and that's also the way we, we provide care for patients and for family.

Denise
So what you're saying, is that when we have an illness, especially a terminal illness, it really is impacting all parts of us, not just the physical isn't it, but, so what we need to be doing is looking at how we can support all of it. The obvious thing, of course, is our physical health, because that's kind of in front of us. But, actually, it's the importance of all of those other parts, and what can we do to help support all of it, because it's all joined together?

Stefan
Often, yeah, when we go and see a GP or another health professional, we may get some ideas, how our physical health has changed. However, that change leads to other changes within our lives, and that awareness, yeah, that this impact provides a change for ourselves, but also for the ones who are close to us, be it family or friends. That's an awareness that is important to have.

Denise
And when we're talking about carers, we're also talking about their Te Whare Tapa Wha, aren't we? Their four walls, because their health is also impacted by their caring for a loved one. And it's all part, all those four walls again are being impacted. just in a different way.

Stefan
If I take the emotional side, from a carer, often what I hear, ‘I experience a roller coaster’. For some people, it can be a thrill. For some people that's anxiety provoking, yeah. A roller coaster also means that yeah, there are ups, there are downs. The pace changes. And for some people that makes it very uncomfortable. Their anxieties, yeah, that may come out. Not just anxieties for the current situation, also anxieties that may sit within you as a carer, for some time, they may be elevated. Yeah. Because of different circumstances. Worries financially, worries about children, there are all types of worries that that may be presented because of the new diagnosis, the changes that you experience.

Denise
And for carers, too isn't there, there's not just the current times but there's also the looking ahead to the future. The time after, the person they're caring for has gone, there's another whole life to prepare for, at the same time.

Stefan
That's often a conflict, as a carer, we want to be present with our loved ones, with the person we care for. However, there's a life that yeah, may look differently after the death of a loved one. I always make people aware about the importance of looking into what life can look afterwards. We are talking sometimes about the term ‘carer fatigue’ and we would like to make people aware that the care, the love, you put into serving and arranging care for a loved one, may have a toll on yourself. The toll may not just be felt physically as exhaustion or tiredness or nightmares. It may also be felt emotionally, yeah. Anger can come up, because of confusion that has been experienced, or frustration, because a system within healthcare hasn't worked the way we would have liked it worked out. Maybe also social connections, yeah, with our friends. Some people may be more distanced, yeah. So there's an impact on many, many different levels.

Denise
Stefan, when people are experiencing these concerns, what are some of the tools that you'd be suggesting?

Stefan
Firstly, it's always important to listen, to what the person expresses. Listening about their concerns, their worries, yeah, and also listen to anger. Often, that's very difficult within the family, because of the relationship, the connections that have been built. Our longing is to be heard. When life changes, when we can't just go for a walk anymore, when we have difficulties breathing. When, yeah, when we get a diagnosis, and we're just overwhelmed, all we want is to be heard. My suggestion for carers, is just be there and listen to what your loved one wants to say. And sometimes, it’s not about words, sometimes it can be silence, and that can be an expression that is even more valuable within silence than an expression with words.

 Denise
It's also important that carers find somebody that will hear them, isn't it? It's important that carers find a person that they can talk to and feel heard. Not necessarily to fix, but just to hear.

Stefan
Yes, and often people express that they have a neighbour, a friend, someone who they feel close to, who they can share, yeah, and that's also important. Because we also need to express all the changes that happen to us as a carer. When we shift into a caring role, our relationship, yeah, with maybe our spouse, with our children, with another relative or friend, can change. Often people express, when I ask them, ‘how much would you, would you classify being a carer? And ‘how much would you classify being a spouse?’ That gets people sometimes thinking, ‘Oh, I'm most of the time carer now’. Which also means that their role has changed within their relationship. Yeah. And to express that to a friend and a neighbour, and talk that through can be valuable.

Denise
Stefan, you touched before about anger. And I thought that's something that's quite important because often there is periods of anger and it's often quite misplaced. If I'm the patient, perhaps I'm really angry at you as my carer, or that's how I'm expressing it. Actually, my anger could be about a whole bunch of things, about where I am, about the fact I'm dying, about being failed by the health system. But my anger might be centred at you as a carer. If I was a carer again, equally, I could be displaying that anger to the person I'm caring for, to other family or to friends, but often that anger is misplaced.

Stefan
I often explain that to people, especially if they have children themselves. Look, when you have a toddler, they go through so many changes within their young life. Often the way it comes out because they can't cope with the emotions that are maybe newer to them, and the way we perceive that is, oh, the child is angry at me. However, the child is angry, because they may not understand and comprehend what's going on. And the same is applicable throughout our life. If a patient experiences a new reality, they might be angry, because they can't move the way they want to move anymore. They can't breathe the way, they can't maybe drink a cup of tea they have enjoyed before. So there are many, many changes, and they might be confusing to the person. And who do we let out anger? Usually, it's the closest person. You're, you may experience, that a patient won't often let their anger out to another professional, but then maybe to their carer, because they feel safe. They express anger, because they feel safe in this relationship.

Denise
And that's something that's really important, acknowledging that we do that with people we feel safe with, because I trust that when I express all of the stuff that's inside me, you're still going to love me. But it's pretty tough being on the end of that anger.

Stefan
Exactly. Because anger can also be presented in ways that a spouse or family member hasn't experienced before. And that can be challenging, in addition to maybe already being exhausted, sleep deprived. Needing to, not just care for the loved one, but also manage maybe, yeah, household and job and children, and throughout all of that a concern may be expressed sometime in the middle of the night when we are not ready. In that instance, I always tell people that if it's too difficult, it's also okay to step aside for a moment. You may have learned ways to deal with anger yourself. A good way is always breathing, breathing. There are different breathing techniques that can calm you down. And you can then go back to the loved one through a more neutral stance.

 Denise
And let's also acknowledge that our carers are human, and they have the right, and it's okay, if they sometimes feel angry back, they can't be expected to be perfect. And they don't have to take that anger and deal with it calmly and perfectly every time as you just said, sometimes you need to just step aside and walk away for a spell, breathe, that's really important. Because this is about you as a carer as much as it's about the person who's unwell.

Stefan
Also, what I always bring to their attention is a question, ‘What keeps you sane?’ Yeah, not what makes you insane. ‘What keeps you sane?’ 

Denise
Great question.

Stefan
And that might be something that you have always enjoyed doing. Yeah. Creating something, yeah, art. That might be going for a walk with a friend regularly. That might be building something, or it might be just spending time with someone, or with yourself if you like. There are different ways that keep you sane. 

Denise
And it's really important to actually take the time to identify that, isn't it? What are the ways that help you keep sane? What is it that you need to do? And then, what's really important, is that you carve out somehow, the time to do that. Because that's how you'll get through all of this, is keeping doing that for yourself.

Stefan
And it is also an opportunity for carers to learn maybe some routines or strategies that you can keep for the rest of your life. To look after yourself, is often something that we push aside and we tell ourselves we'll do it later. Something that, that really helps, are those strategies. And I often present the whare, the house with the four walls to people, and then we check together, what are ways from the physical or emotional, from a spiritual or from a social point of view, yeah that keep you sane, that help you? Not just now, but also going forward.

Denise
That's a really good thing to do, isn't it to think about those four walls, you know, what's something physical I can do? Is that going for a walk, maybe being in the garden? Something spiritual? Now for some that might mean going to church, for others it might just be being in the bush, it might be reading something, being on your own, as you said before, can be really important. That whanau, the social aspect. So who is it that I can spend some time with, that's going to support me? And that physical? How can I just perhaps, somehow get a little more rest or do something that's physically rewarding for my body as well? So looking at those four things, and it might be one activity actually covers a couple of those, because it is important that we look after ourselves holistically

Stefan
Totally agree with you, Denise and you also brought up right at the beginning, a beautiful point about spending time in the garden. If a person loves that, planting, looking after something that is growing, that's also from a spiritual point of view. You're looking after a plant but you're also looking about something that, that grows. And even though your experience right now, at time with many challenges, and as I said before, confusion, maybe yeah, something wonderful can grow out of that if you're willing to grow yourself, in that respect.

 Denise
And equally Stefan, you touched on doing something creative. And that's something that's also I guess, similar to that growing isn't it, for some people, it might be baking, or building or carving, painting. And for many people, even with no artistic skill, splashing some colour around on a piece of paper can be quite therapeutic. Colouring-in books for adults have become tremendously popular. So that sense of creating can also be quite therapeutic at times can't it?

Stefan
There's something that will speak to the person. Yeah, there's so many different options that people can engage with, and looking after yourself right at the moment, when you experience anger of your loved one, that will take you a long way. Not just in supporting your loved one, but especially in supporting yourself going forward.

Denise
It's often helpful to remember I think, that so far, each of us has survived 100% of what life has thrown at us. And in that time, we've already garnered some tools. So now's the time to reflect on what those tools are, ‘What's got us through things in the past?’ Because it's going to help us again now. Stefan what else would you like to share with us today?

Stefan
I'd like just to briefly touch on two points. First, it's about setting achievable goals or routines for yourself, that's important. And these routines might also look a little bit different than the way you have experienced that previously in your life. And one of the differences can be the pace. You may do it in a different pace, and that's okay. Don't let yourself get rushed into something, yeah. Your steps might be slower than before, and that's okay. The second point is about saying no. Saying no is okay. You are in a different situation and environment in your life, and even though sometimes we may be told we are superhumans, we also have our limitations. And through our limitations, it's okay to say, ‘I can't do that right now’ or, ‘this is not possible’. To say, ‘No, this is my limit’ is also okay in that circumstance.

Denise
Oh that's such a good point. Yes. You have the right to say no. Especially people who are carers have often a habit in life of saying yes to everything, to helping people out. But now's the time to practice, saying no. Such a key point.

Stefan
And often the way I tell people, the way you can practice to say no. If you go for a walk, or if you spend some, some time meditating or being by yourself, that can be some time that you can practice to say no, because it might be more confronting, when you have to do that with a friend or family member, the professional, but if you practice that beforehand, it might come a bit easier when you have to say no, because this is your limit.

Denise
And you know what, hopefully, you've got a good friend that you could practice this with as well. You know, somebody who you can say, ‘I know I need to say ‘no’ more’. Because usually a good friend is gonna say, ‘exactly’, and they’re going to help you with that. So practice the saying No’s. Stefan, this has been really interesting today. Thank you. You know, I hopefully that our listeners have got some ideas, some tips on that and ways of dealing with their own grief. We do have resources on our website that people can check out if they would like to know a bit more. So Stefan, thank you.

 Stefan
Thank you very much Denise and Kia Kaha

Denise
And thank you listeners for joining us today.

This podcast series was bought to you by Otago Community Hospice with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who’s dying at https://otagohospice.co.nz/education