Ep 4 - Grief & Loss

Grief is different for everybody. There are no clear guidelines, but we have some advice for adapting to the grief you are feeling.
An interview with Sue Lewis, a counsellor with a particular interest in working with grief and loss.

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Transcript

Ep 4 Grief and Loss

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 Grief and Loss

Denise
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today I'll be talking with Sue Lewis, a counsellor with a particular interest in working with grief and loss. Hi Sue

Sue
Hello, Denise, how are you doing?

Denise
Good, Thanks for joining us today Sue. Sue, I know that you've got a particular interest in how our brains process grief, and that emotional pain is actually processed in a very similar way to physical pain.

Sue
Yes Denise. It's actually been an interesting concept for me. And something that I've found has helped quite a few people when they have been experiencing extreme grief. In some of my work, of course, we work with trauma and have learned how trauma affects our brain, and losing someone is hugely traumatic, obviously. We're hardwired to be social animals and right from the time when we were cavemen, we learned to rely on people close to us, so our brain is hardwired to look after people around us. So when we lose someone, we come face to face with threat. We are now in a situation where we've lost somebody who was helping us to feel safe. And our brain processes that as 'this is dangerous' and 'this is traumatic'. On top of that, of course, it's the actual losing of somebody who you have loved and who has been very important in your life. The brain registers all of that, just as it would do physical pain.

Denise
That's really interesting Sue, because you're talking about something that you're saying is so basic, that it's really ingrained in the very beginnings of who we are, as humans.

Sue
Scientists have recognised that there seem to be two pathways of pain. One ascending and one descending, and obviously, the ascending one is if we experience physical pain, those messages go up to our brain, and then the descending ones are what our brain is telling our body to do. And at the area in the brain in our cortex, which is the most developed part of our brain, those two ascending and descending pathways connect, and the brain feels the pain.

Denise
And so that emotional pain follows those same pathways as physical pain 

 Sue
Physical pain gets triggered by having an injury. That emotional, scientists call it social pain, can be triggered by all the symbolic things around us, you know, smelling the clothing from someone we've lost, seeing a photo, and that will trigger the pain reaction in the brain.

Denise
So physical pain comes from that physical sense. But there's emotional pain can come from any of those things, as you say, smelling clothing, a familiar fragrance, hearing a sound or a voice recording, perhaps of a loved one that we no longer have with us. Any of those other senses can also trigger those responses.

Sue
And I do know of several people that I work with who have deliberately kept the voice message of somebody who has passed away and they will phone the phone just to hear that voice. It becomes a great sense of comfort. When I am seeing somebody who is facing their grief in the very raw stages, I do ask them to think of themselves as having been involved in a car accident. If they had broken their arms and legs, they'd be lying in a hospital bed, and they'd be expected to be a good patient. And being a good patient means resting, taking your medication, doing what the doctors and the nurses tell you to do, and slowly but surely letting your body recover, before you rush out into the world again.

Denise
And we do allow our bodies to heal, don't we? But we seem to assume that our brains and our minds and our hearts will just get on with it.

Sue
Yeah, because you can't see it.

Denise
And actually on that Sue, people talk, don't they, when they have an invisible illness or a broken arm or plaster cast that gets sympathy, it's obvious. But when people have a disease process or something where they look perfectly well, but they're not, it doesn't mean it's any less powerful.

Sue
It has an enormous effect. I think that anybody can tell you how exhausting they find grief, and I think that probably, it's helpful for people to understand that there's really no map for grief. We’re used to this idea of these stages of grief, you go through the bargaining stage, and you go through the anger and all that stuff, and obviously, we've learned now that it's not like that at all. It's not a linear process. And it jumps up at you at the most awful moments, walking down the supermarket aisle and seeing a loved one's favourite food or something, and suddenly, you have to rush out of the supermarket. So grief, it's an uncharted course, and it's very, very different for each one of us, and so I think if we can understand that, it does help us to be a little patient with ourselves. Having those external expectations are just no help at all, you know, like, ‘I should be through this bargaining phase by now’. It just doesn't work like that. It's not that helpful.

Denise
I think they were great steps weren’t they ,developed by Elisabeth Kubler Ross, but she herself never intended them to be linear, and it was a great starting point for all that we've learned since then. But yes, for many people, it's kind of, as you say, ‘I've got to get through that step and get through the next one’, but actually, we move around, and I was going to say circles, but it's not that formula, either is it? It's all over the place.

 Sue
It really is like a ball of knitting.

Denise
That the cat's got hold of.

Sue
Yes. You just have to go through it and give yourself and your body the time, to come to terms with this awful, traumatic thing. Your life will never be the same, and it takes a while for your brain to understand that.

Denise
So when you're saying about taking time to get over it Sue, do we get over grief? Or do we learn to live with it?

Sue
Very good point. We have to learn to live with it, and that's the work of grieving isn't it? I think that until we have been affected by grief, grief is this concept out there in the world somewhere. And then suddenly, we experience grieving. And it overtakes us, it overwhelms us, it becomes what we are. The work of grief, or grieving, is to not to be overwhelmed by it, but to let it become part of who we are, but that we can still live around that, that grief.

Denise
I saw a wonderful analogy that has really sat with me, and it was an image of a ball inside a vase. And the ball is very large and that's our grief and it fills the vase, and this imagery suggested that we expect that over time that ball will get smaller, the grief will get smaller. And instead what this person suggested was that in fact, the vase which is us, gets larger and our life gets larger as we grow and we live, and the grief is always there, it's always a part of us but we are learning to live with that. And for me, that image really helped me, understand about it not having to go away and not expecting it to go away.

Sue
Yeah, and it's also the expectation of the world around us, that you get over it. And that's where I think, again, this whole business of having to move on and get over it, comes from the outside world as well. It's really difficult. So being patient, I think, is one of the biggest things that I've tried to ask people to be. It's a cliche to say, to ‘be kind to yourself’, ‘be compassionate to yourself’. We're really good at being kind to other people, but not so much to ourselves.

Denise
So when somebody says to you, ‘what do you mean, be kind to myself? I don't know how to do that’.

Sue
I usually ask them, what kinds of things they enjoy doing. I like to ask people to go out into nature, if they can. I do think that being connected to hearing the bird songs, or listening to the water rippling. It's soothing. It's bigger than just this what I'm sitting with. So I ask people if they can possibly do that, but then, it is simply living with what they can do right here and now. It really is just ‘how much can I do today?’ and ‘how much is it okay for me to not do’. Being patient, it's an exhausting business.

Denise
I think that's a really great point that you just said, ‘how much can I do today?’ and ‘how much can I not do?’ To say ‘today, I'm not going to do some of that, that can wait, because today is going to be about me’.

Sue
Quite a useful thing, is to understand that grief is an umbrella idea. There are so many different emotions that are contained within that word. If you've been watching a loved one suffer, you might feel relief, and then there might be guilt that ‘Oh, my word, I'm feeling relieved that my darling has died’, you know. So there's guilt, there's relief, then you might feel abandoned and angry about that. Or you might feel regretful that you never got to have that last conversation or whatever. And I think that there's quite a lot of value in identifying ‘what am I feeling like right now?’ 

Denise
So grief isn't always sadness. It's not always floods of tears, actually, grief can present as anger, or other emotions, but it's all part of that same package.

Sue
That's right. And being able to, I mean, even keeping a notebook and writing down ‘I'm feeling sad’. Sad is also a bit of a wishy washy word though, isn't it? Yes, you're sad, you're grieving. And if you can be a bit more specific than that, ‘I'm angry because…’, or ‘I am regretful that I never…’, you know, just pinpointing it a little bit, I think helps to be a bit more specific, ‘today this is what I'm dealing with’.

Denise
I was talking to a young friend recently and suggested that they had the right to feel angry at the person they loved for leaving, even though we knew that that person didn't want to leave, wasn't a choice, but they had the right in that moment to feel angry and equally to be angry at me at that moment because I wasn't gone. I was still here and the person they loved wasn’t and I said "That's okay. I accept that". It's not personal. Because we sometimes need that permission, don't we?, that we are allowed to feel this way?

Sue
We really do need that permission, yes, and it's so difficult to define. ‘I'm grieving’. Okay, but what does that mean? How long is it going to last? What tablet can I take to get to make it better? There just aren't those answers, and so it is really important to just give yourself permission to feel whatever you are feeling. 

Denise
So, Sue, when we're talking about this does everybody that's grieving need to see a counsellor?

Sue
No, give yourself time to recuperate, obviously, and in that time, that's going to be your primary concern. But if in three months’ time, you're still finding that you can't think about doing anything other than feeling sad for what you've lost, perhaps it's time to just explore that a little bit with somebody who can be a bit supportive and non-judgmental, you know. I think it's quite helpful to talk to someone who's not involved, who's outside of the situation, just to give you a bit of an overview of what they see happening.

Denise
And I guess too, you spoke about, who you might talk with, some people will have a wider circle or a more supportive circle that they can have those discussions with and move through the different parts of what they need to talk about. Others perhaps are a little more isolated, and then there might be a value earlier in finding a counsellor to talk with.

 Sue
Yeah, that isolation comes down to us being social animals, we do need to be able to have people around us even if we're not interacting so much with them. Just having some safe people around us. I guess it's a bit like physical pain, having a hand just touch you and hug you. Having somebody bring you a hot drink or warm wheat bag is just comforting. And we are social animals, we need that comfort, we need that support, and isolation is not a good thing.

Denise
We talk in palliative care about the use of presence that sometimes just being with somebody is all that's needed, not doing, just being, and actually that still applies in grief then doesn't it? Sometimes we just need someone to be there.

Sue
Yes, that's all it is. Because in the beginning, it's very difficult for you to be able to interact a lot, because it's just so exhausting. But knowing that you're not alone is very important. I suppose it's also knowing that you're being seen, you are still there.

Denise
That's important to know, because we may not feel like contributing to the lives around us during a period of grief, but that doesn't mean we don't want to still be seen and acknowledged. And so even if you've invited me out five times and five times I've said no, I still want to be invited again. I still need to know I matter, even if I can't quite join in.

Sue
You know another thing that has struck me in speaking with a lot of bereaved people is how quickly people don't want to talk about the person you've lost and how painful that is for them.

Denise
But I might remind you of the person that you've lost. As if you've forgotten.

Sue
They want to be reminded! We're not very good are we, at dealing with awkward conversations or even being able to gauge how that conversation is going to go, and I suppose it's a really good step then is just to ask, ‘Is it okay if we talk about the person you've lost?’

Denise
‘Would you like to talk about them?’

Sue
Yes, ‘Shall we go to that restaurant where we always used to go?  Or is that not okay, right now?’ 

Denise
I had somebody say the other day, they're aware of somebody who has been given some really bad news. And they said, ‘oh you know, I'd like to ring them, but I don't know what to say’. And I said, ‘then ring them, and tell them that’, because not ringing them and not making contact is much harder. Because so many people, they don't know what to say, so they don't say anything, but actually just ringing and saying, ‘I wish I had the words’.

Sue
And that's awkward, isn't it? It's awkward to admit that you don't know what to say. I've heard of stories of people actually crossing the road because they don't want to face the bereaved person. yeah, that's just so sad.

 Denise
It's sad, and it hurts.

Sue
Very much so.

Denise
That's another loss, isn't it? Because there's a loss of that friendship, at least for that period of time.

Sue
Yeah, and I think that that's important for us all to acknowledge is that when you lose somebody dear to you, you do lose part of your life. You lose that person that you were, with that person. You've got to find yourself all over again and when your friends feel that they can't reach out to you, then as you say, you've lost that part of you as well.

Denise
Equally, sometimes that appears that, you know, it might be a new friend actually comes in at this point, someone, usually somebody who has suffered grief and loss themselves and understands the need to have that contact and to be around, so being open to that possibility can be important.

Sue
Just making new connections, if you can. I think that that's probably my absolute number one is I've had to learn, to be patient with myself. And just understand that it's a process. I know a lot of people hate that term, but it is the way the brain heals. And the only way that the brain can heal is by processing the information again and again, and that can mean very painfully reliving those last minutes. It can be reliving time, special time, sad times. That's how the brain is making sense of what has happened. We all know that we go into shock to begin with, which is the brains way of coping, you just go through the motions and do everything that you need to do, but once that shock wears off, the brain kind of takes a deep breath and wakes up and says, ‘what just happened there?’ and then has to remember and go back, and that remembering can be very painful.

Denise
It's a little bit like learning to ride a bike isn't it? Falling off is painful, but you have to go back and do it again and again, to learn how to do it, and so actually, this is not dissimilar, is it? that you have to relive it, you have to go through it to learn how to move on to that next part, to get through that.

Sue
That's a good way of putting it. We have to learn how to live this new life, and that's by just going over it and over it and over it, as painful as it is. One thing I’d just like to add is that we, because we all grieve differently, there are people who fantastically get up the next morning and carry on. Some people are busy and get on with the world and they don't

Denise
because being busy is their way of dealing with it.

Sue
Yes, and that's okay too, if that works. The doers and the thinkers or the feelers maybe. Whichever way works, it's fine.

 Denise
Because it can be easy to judge can't it? that that person, gosh, they've grieved too long, and, gosh, that person hasn't grieved long at all, but actually, coming back to what you said, it's individual, and we have to trust we know, each of us, what is best for us.

Sue
I'm just thinking too, it might be quite helpful to work out a little script of what you can say to people. Last year, I suffered a loss and after three weeks of doing, getting out there and going back to work, and all the rest of it, I collapsed, and I just could not go to work the next day. So when I did go back to work, my manager said, ‘what was wrong with you? What happened to you?’ And I was completely flummoxed. I kind of said, ‘well, I'm dealing with this grief, and I just couldn't make it that day’. And that didn't satisfy him at all. And I've just wonder whether perhaps I'd thought out what I was going to say it might have made it a lot easier. So maybe scripting a little bit of ‘today, I just cannot because I'm feeling so overwhelmed with pain’.

Denise
I like that idea because I mean, you didn't script that because you weren't expecting that kind of a response. But actually, at any point, one of us may have to deal with somebody who doesn't get it. So you're right, having a plan for what you might say to someone who doesn't get it. Because I don't think, I always think of the perfect answer like an hour later. ‘I should have said such and such’. So actually thinking through, ‘if somebody said this to me, what would I really want to say back to them?’ And having just a short comment that effectively tells them to go away.

Sue
Yeah, in a respectful manner. Yeah, I guess it would take the awkwardness out of the situation. Or when people do ask you, you know, ‘is it okay for us to talk about your loved one?’ What do you want to say? Do you want to just brush it off? Do you want to say no? And how do you say no, so that it's not awkward?

Denise
And you might have any couple of answers prepared. You know, if somebody said to you, ‘do you want to talk?’ ‘No, thanks. Not today’. Or ‘actually today is a good day’ or ‘you're the right person. I'd love to’.

Sue
What you're saying too, is that we can learn to be truthful. Instead of polite. Which is a big growth. It can be easy to retreat because you are in that hypersensitive mode. Again, we all know if you banged your toe, and it's throbbing, of course, you're going to bang it again and again and again. And we become sensitised to that local pain. And grief is the same, we become really sensitive. When somebody even looks at us sideways, sometimes it can trigger that pain. ‘Don't look at me like that. There's nothing wrong with me’. We can become really sensitive and people can be insensitive. If they can't see that you're struggling, they will just carry on as if nothing's happened.

Denise
Well, it suits them to do that doesn't it because then they don't have to deal with the messiness of grief.

Sue
Yeah. Not that they should need to. But I do think that we need to just be more aware generally, that when you have suffered a loss, it's suffering. That's why it's called suffering a loss. And we need to be kind to the person who's suffering.

Denise
Coming back to you earlier, we need to be kind to ourselves.

Sue
I did see a quote, which said that ‘grief is love trying to find a home’. And I wonder whether that doesn't come back to your image of the vase with the ball, and that love coming to rest and being comfortable and safe and secure within us

Denise
Sue, thank you so much. I think that's a really powerful comment and image to leave with. So thank you for joining us today. And thank you listeners for joining in with us. 

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