Ep 10 - Finding Meaning - The Importance Of Self

These days of caring for someone you love who is dying will be hard. But it is important to ensure you find some meaning in your day-to-day actions.
An interview with Noeleen Christey, a spiritual care coordinator in palliative care, with a background of a Bachelors of theology. 

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Transcript

 Ep 10: Finding Meaning - The Importance of Self

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 Finding Meaning - The Importance of Self

 Denise
Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago community hospice. Today I'll be talking with Noeleen Christey, a spiritual care coordinator with a background of a Bachelors of theology. Hi Noeleen

Noeleen
Hi, Kia ora

Denise
Noeleen, thanks for joining us today. We are wanting to talk about spiritual care and the importance of self, the importance of who we are, and finding our meaning.

Noeleen
Thank you. Yes. Self is so important because the world is made up of many selfs. And I think the danger is if we lose self in our caring for others, which is basically what hospice and spiritual care is about, is identifying that self has a high importance, high regard and its own needs.

Denise
You know, it's really easy to get lost in the caring and, you know, for both patients and for the people caring for them, you know, that meaning making becomes really significant doesn't it

Noeleen
It surely does, it surely does. In hospice, and a lot of New Zealand medical teams we look at a New Zealand Maori health model called Te Whare Tapa Wha, and the strength of self comes out hugely in this and it gives us permission to take our eyes off others and look at ourselves. So the whole idea of health model Te Whare Tapa Wha is the image of a four walled house. We need four walls for a house to be strong so we have things like the physical wellbeing, Te Taha Tinana; the mental and emotional wellbeing wall, Te Taha Hinengaro; the social wellbeing wall, Te Taha Whanau; and my specialty Te Taha Wairua, spiritual wellbeing. So self has to have all these in balance, and repairing or strong to carry others through this, the journey of illness.

Denise
It makes sense, doesn't it Noeleen, because we have those four walls around us, and if any one of those is failing, the other walls are having to kind of prop that up and support it. So we really do need to look at that holistic health, don't we? It can be really easy to get focused on the physical health, and sometimes even the emotional health can become quite obvious. But actually spiritual health can maybe just get a little bit lost in there sometimes.

 Noeleen
Everyone can define spirituality quite differently. And yet the whole idea, it’s about finding meaning for who they are, why they think, why they react like they do, it’s really the essence of who they are.

Denise
So it's not necessarily about religion.

Noeleen
No, a small part, maybe, but not formalised religion at all. All of us have some sort of belief system in who we are, where we belong, what the future looks like. But yes, no spirituality is not necessarily about faith. I have a wonderful diagram that I use a lot, of an egg. And if you bury that egg up to the point, where the point of an egg is sticking out of the ground, there's an awful lot of self that we don't show people, we only show them that little point. And if we think of self, the real us, how much of it do we share? And I guess, depending what's happening around us, if we're feeling strong, we might share more, but if we're feeling vulnerable, as in the case of helping someone else whose sickness or our own sickness, we might not reveal as much.

Denise
Yeah, that makes a lot of sense. We certainly all keep certain parts of us really quite private, and we'll share more if we’re feeling safe and supported by the people around us. But yeah, when we're challenged, we're going to kind of retract in a bit and pull that dirt over the top a bit more almost aren't we?

Noeleen
We know the word ego. This is the persona that we portray and in that ego we'll have our natural fears, and the person that we project outwards. And I think psychologists would call that the surface mind, what's up there in that egg point but it’s what happens below. I was talking about a testimony of a sick man and he found that through his illness journey he learnt more about himself and he actually said,’ I don’t want to go back to that shallow person I was revealing’. He said, ‘I’m much more of a complete person now that I’ve actually explored why I really think and say what I do.’

Denise
We learn something from all parts of our life really don't we, that we keep evolving as, as people.

Noeleen
Yes, yes.

Denise
Through the good and the tough.

Noeleen
I think all life we’re learning to hide certain things and suddenly you get to a point where you want to be free and know that you are valued for who you are. And there's something beautiful about accepting yourself, knowing your family and community accept you for who you are, and for some it’s that finding peace with a higher other, whether that’s god or the environment, nature themselves, you know, ‘where do I fit in?’

Denise
So spirituality can have a lot of different meanings for people can’t it? You just touched on that sense of something greater and it's often quite a broad definition for people that just that sense of something greater than myself. You mentioned the nature and for me, that's my sense, being out in the bush, is that sense of something greater than me, something awe-inspiring. And there's a peace and tranquillity in finding that and knowing I’m a small part of it.

Noeleen
Yes, yes, important as well, and as beautiful. I had one family member say that she's going to retreat to a waterfall, that’s her significant place. And so I guess, where do you feel most at peace? For some people, it might be just curled up in front of a fire at home. Or for another, it might be getting out in the bush, up in the mountains, walking along the beach.

Denise
So it's a little bit about looking inside ourselves and thinking, ‘who am I? And what do I need at this time?’

Noeleen
Yeah, yeah, very much so. And you know, what does walking in the bush mean for you, is it because that’s something you've done with more meaningful others, such as your family, or your grandparents, or you know, who took you to the beach? who took you to the bush? who took you to the park? who pushed you high on the swing and made you feel safe? There's some really lovely stories that go along with who we are and our spirituality.

Denise
So sometimes I would imagine, both for patients and for carers here, you know, if we're journeying together towards somebody's end of life, then finding that space that creates that meaning for both of you could be really contributing to that special time.

Noeleen
Yes, very much so. And I think the carer must be aware that they are also an important self. So they need to know who they are, and be quite honest about what they need. If they can't express that to their loved ones then that's fine, but to be able to have a place where they can. The patients as well, you know, they’ve got a journey, they’re probably facing all those big questions too, you know, is there an eternity? Is dying going to hurt? Just things that the ego of our self is actually trying to negotiate, that whole picture of life.

Denise
Sitting alongside that, Noeleen, for many people, there may be a sense of unfinished business. And that can trouble people at this time, that can have quite an impact on relationships.

Noeleen
For some people, it will be conversations are permissible. And for others, they might want to shut that down. It's about being honest about ‘I would like to talk about this’ and give people the space to do that.

Denise
And if there’s a circumstance where one person feels the need to talk but the other really doesn't want to, then it might be important to find another safe person to talk that through with.

Noeleen
Sure, and I think there’s lots of people out in the community too. I mean, hospice provide that service, but you might be able to find a local church, a minister, someone that can express that, a trusted friend. I think the person themselves will know. Because it does hurt, not to be able to share that intimate statement, it might be a confession, it might be a regret. You know, they come under so many little umbrellas but they’re big, to the person that wants to express them. It's about being connected.

 Denise
I'd like to add Noeleen there, that even if you're not part of an organised or formal religion, that still might be a place to find somebody, and I remember when I was in Girl Guides, that, I was required, for a certain badge that I was going for, to have a discussion with a Minister about my own origins and meaning of life really. And he was a great guy that knew that I came from no formal background, but we had a really, really great conversation that, you know, 40 years later, I can still remember the basic tenets of that conversation because he was able to be open and honest with me, and really helped me through that time. So even if, you know, religion is not a part of your everyday life, that still might be a source that you could go to, to have a talk if you're needing to talk something through.

Noeleen
That's right. And even when I walk into a patient’s room, I will ask questions that aren't particularly faith directive but they’re little lead-ins because a lot of the generations we're dealing with now, have had Sunday school, and they might never have engaged with that faith as an adult. But sometimes these little questions that are running around that they would like answered, so I just almost put it out there, and if they want to pick it up, we pick it up. Otherwise it just gets left as a, not important.

Denise
That's a big part of your role, isn't it, as allowing people to speak about what they need to speak about/

Noeleen
Yes, it's very individual. Yeah.

Denise
Certainly, when someone's facing the end of life. For some, that’s a time of great meaning and a need to talk. Others may be really comfortable, that through their life they’ve said everything they needed to say, and actually simply being is all they need.

Noeleen
Being in your presence. I visited one patient and I started to talk to her and she burst into tears and I thought, ‘What have I done wrong here?’. And when she composed herself, she said, ‘thank you, my visits are really about my body, the obvious wall of pain’. She said, ‘But you're the first person that’s asked about me and my story and my cares outside my body.’ We struck up a wonderful friendship after that. Just knowing that I was hearing her and caring about what she was worried about.

Denise
Being heard is so vital.

Noeleen
Yeah, we've all got a story. I certainly find myself encouraging people to write down their story for the next generations. I really encourage that. Patients were at peace when they died because they’d got down their story that they needed down. Even if they weren’t physically there, their experiences were recorded. The questions or the decisions they had to make in life were validated. And they really were at peace because they weren't going to be forgotten, just because they weren't going to be present anymore.

Denise
Which is really quite a big part of this finding, or making meaning, isn't it, because you're making meaning of your life when you record down those key things, and it might be decisions you made, that you're not proud of. It might be, you know, actions that you've taken that you are proud of, but it's all part of the whole, and, you know, we hope that others might learn from our lives.

 Noeleen
Yes. Part of spiritual care is trying to tie the environment, the home, and some of those experiences, to my patient. And I started to consider the idea that our lives ripple along, we're bumping into other people's ripples. You know, there are influences on our life. So I wrote this little poem and it’s called ‘A Ripple Begins’.

A baby is born, a ripple begins in the pool of life. 
Each challenge, each answer, each step, each fall, the ripple gets wider and stronger.
 Softly the ripple ebbs with others, relationships, memories, losses and goals, dancing in the light, searching for its place. 
The pond edge is nearing, the wake of life bumps to the shore, the circles chase and gather, the ripple ends. 

Denise
That’s beautiful Noeleen, thank you for sharing that. And actually, when we start those ripples, none of us had any idea where they'll go

Noeleen
No, again that’s part of the mystery isn’t it, or the sacredness of each person’s life. And I think we just have to validate that everyone has value, everyone's on a journey that's specific to them. And, I might deal with a patient but then the carers also have their story. And, in some cases, caring for someone can cause huge changes in someone's life or direction. They stop, you know, life might just actually pause, and it's all about the patient. So it's about finding momentum again, and finding purpose and having that energy to keep moving forward.

Denise
I've noticed over the years, that, as a nurse, that it's often the time, in those caring for somebody who is dying, it's harder to be the carer than it is to be the patient. And it seems to me to be for a couple of reasons; that one, that when we see somebody we love suffering in any way we would rather it was u,s than them and the patient gets that wish they don't have to watch their loved one suffer, they have to watch them grieve, but not physical suffering. But also for the patient, there is an endpoint, whereas for the carer, they have to get through this, but they also have to envisage that life beyond, that next step. And that's another challenge.

Noeleen
Yeah, definitely, definitely. From what I see, it’s often the patients are the ones that accept this diagnosis. They are minute by minute, hour by hour, day by day, going through the physical changes that their body is showing them as it slowly winds down. But you're quite right, for the family that are looking on, they’re thinking about a whole lot of other things. And probably more about, what does it look like after, you know, so, so they’re actually living through a dread or worry today, when they really should just be enjoying the moment, savouring what is happening right now with their loved one.

Denise
Certainly, speaking with people later, they reflect back on this time that is so hard, but it's also very, very special.

Noeleen
It's very tender, especially if you get to the point where your loved one is bedridden, and you're the one bringing in daily information, because the person in bed is disconnected from their environment, disconnected from a lot of their friends and so you become the light in that room for them, you become the contact with the outside world. And when the only thing you've got to offer is your voice, as in the patient, a lot of things will come out, and there'll be laughter, and there'll be tears, but both are very valid.

Denise
And it comes to me that there's a lot of real honesty in those moments.

Noeleen
I would like to think there's honesty in those moments. We all want genuine contact with others, don't we? That's what you will look forward to, the fact that someone will be real with you.

Denise
And there is often a lot of humour, in those points as well, you know, some memories of times gone past and people are often surprised to hear laughter at the hospice. But actually, there's a lot of living happens there.

Noeleen
Yeah, its living, and reliving, isn’t it? So no, I think we’ve got to remember that, our patients and ourselves, are physical and we have this whole idea of the five senses. So if it's the hearing sense, is silence in there when you go to visit them, or do they want song or conversation or loud music? Are there certain smells you like? Do they like the look of candles glowing, or do they not want candles? You know there are so many things that just trigger memories. If candles bring good memories, bring candles in. If there’s a scent they love or flowers they love, bring them in. If it’s pine trees that hold the smell of the pine oil, bring it in. Everyone's got a story and there'll be things that trigger good memories.

Denise
And animals are a part of that. You know, I've often encouraged people to bring pets in, you know, if the cat always slept on the bed, then let the cat sleep on the bed, you know, dogs, we've had many different pets visiting at hospice. And it's wonderful to have them there. And it's often important, I think for animals to have an understanding when somebody dies.

Noeleen
Another thing that I was thinking of is that the dying are grieving and so are the carers, before people die, and I heard a lovely saying the other day, that grief is love looking for a place to live. And I was thinking, you know, if someone's dying and, and they’re grieving, they still want to love, they are still reaching out.

Denise
Grief is love, looking for a place to live. I like that. That's really special.

Noeleen
And I think throughout this whole process, what we're trying to do is find peace with that greater being, greater place, greater sense, peace with community, peace with ourselves, and in doing that we find meaning for our journey.

Denise
Seek out what it is, look within, look without, to find what it is that you need, to help fill that up for you.

Noeleen
Yes, I was talking to a lady who lost her mum and she said,’ the desire was that my mum would die at home’. And so they were pushing and I'd arranged the ambulance to transfer from hospital but she said, ‘I touched my mum. And I realised that that hurt her,’ so she said, ‘I'm not putting her in an ambulance to take her home’. And I congratulated her because I said, you know, ‘there was a will to die at home, but actually, that would have been cruel’. And I said to her, you know, ‘you made a wonderful decision there for your mum, and you were all together. It didn't really make any difference. But Mum was happier where she was.’

Denise
Surrounded by the people who love her.

Noeleen
By the people who love her, yeah, that connectedness to others.

Denise
That’s what home means, usually.

Noeleen
That's right. A mother with her children doesn't matter where they are, as long as they are with her.

Denise
Yeah, absolutely.

Noeleen
From the carers point of view, they don't know what dying feels like, and they don't know what the dying person is really thinking unless those honest conversations come. And I would just really encourage them to open the door with a conversation saying, ‘if there's anything you want to talk about, just tell me you'd like to talk.’ It really is a special time because it will never come back, and I think, ultimately, we want to let our loved ones move on to death, with everything said, and no regrets. It's just a really beautiful time of sharing and understanding and just caring for that other. Just to encourage them and know that we're here, for them, whatever they want to talk about, we'll be here.

Denise
That’s lovely. Noeleen thank you. Thank you very much for joining us today. And thank you, listeners for joining us as well. 

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