Ep 18 - Relationships and Intimacy at the End of Life

Relationships and Intimacy at the End of Life

Relationships can be challenging at the best of time. So when a loved one gets a terminal diagnosis, it’s a tough time for many. The power of touch, connection and intimacy during this journey can be significant to both carer and patient. We shares some ideas to help you sustain your relationship. 

Featuring Clare Greensmith, a registered psychotherapist with a working interest in relationships and intimacy at the end of life.

Written resources to support this podcast can be found here 

Find out more about Otago Community Hospice via our website, facebook or instagram 

Email us:  endinglifewell@otagohospice.co.nz 

Transcript

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Ep 18: Relationships and Intimacy at the End of Life
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 Relationships and Intimacy at the End of Life.

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today I'm going to be talking to Clare Greensmith, a registered psychotherapist with a particular interest in relationships and intimacy at the end of life. Welcome Clare.

Clare

Kia Ora, nice to be here.

Denise 

Clare, touch and relationships are often something that get really challenged, when we're looking at the end of life, aren't they, there are often so many factors that can have an impact on that, for couples in particular.

Clare

Yes, I think that's right, I think when a couple are contending with one in the couple facing serious ill health and all of the issues that the end of life brings, it can feel a little bit like an invasion into your relationship. There'll suddenly be a lot of appointments, there'll be health professionals to have links with, there'll be a lot of practical things that sort of can feel like they can swamp, and they absolutely need to be attended to, or else things really do fall apart. But it can switch the balance in the relationship from being a couple as partners to sort of potentially being more of a professional carer. And it's very hard to be a carer in that sort of nuts-and-bolts practical way and also be a partner. And so, I think it's something worth paying attention to, because the research suggests it's actually very important for people to keep the partnership alive.

Denise 

Yeah, I can understand that. When one of the couple is now spending all their time caring, I can see how that can change a relationship for people. And that would be another real loss. So if we can find ways to keep at least, even if it's some of the time, being a couple, rather than a carer and patient, that’s got to feel better in the long term.

Clare

I think we have to be nuanced about this. Because, of course, part of being in a partnership, and in a couple can mean that you do care for each other, and they’re acts of love. So, you know, sometimes I've heard people say, I think perhaps a little simplistically, “oh, you need to be the wife, and we can do the care, or you need to be the husband, or you need to be the partner”. And that, I don't think is true. It's a more nuanced thing about thinking about the balance really. And so, if you can have some aspects of your life as a couple, and as a partnership, that remain a bit apart from that, you know, keeping something as normal as it can be under your roof, I think is quite important. So, it might be you know, trying to sleep in the same room still. Or it might be if you're having to sleep in separate rooms, that you know, one hops into the other's bed in the morning so you can have a cuddle and a cup of tea together. Perhaps do some of the things that you might always have done in the relationship.

Denise 

I like that, you know that doing some of the things you've always done. And I remember talking to a family member once and for them, they’d always had a glass of wine together. Before tea, they'd sit down after their end of workday, and they had a glass of wine together before they had tea. And for him, he no longer enjoyed the taste of wine. And for them that was a real loss, and it wasn't the wine, it was the sitting together and doing something they've always done, and we looked at alternatives around what they could do that he could still enjoy a glass of something.

Clare

But I think you're onto something about that ability to sit next to each other maybe, you know, if you're able to sort of sit in proximity, then physiologically, you know, you have that benefit of somebody being close by just in the same way as if we would comfort a child or be next to somebody who's distressed in other times of life, you often sit next to them, you would just sort of grab that person's hand, there is something very comforting about that proximity. And I think you're absolutely onto it when you talk about loss. People have incremental losses to face, some that might feel huge, some that might feel very small. But if you put them all together, they feel bigger and bigger.

Denise 

And sometimes we don't even necessarily realise what we've lost do we because it creeps up. You know, simple things like holding hands. I feel like when somebody's really unwell, we become nervous about touch, because we worry that we might hurt them or cause pain. Or we’re so busy doing the caring stuff that we forget about just a loving touch, just being held, and that touch deprivation is important. It's a thing.

Clare

Yes, yes, it is. And we know that babies and right through the lifespan, you know, babies fail to thrive, if they're not exposed to loving touch. They can be clean and well fed, but if they're not exposed to affectionate touch and cuddling and eye contact, you know, talking in attunement through the face and the facial gestures, that applies throughout the lifespan. And so we talk about skin hunger, sometimes for people when they're very old, when nobody touches them in an affectionate way. I don't know if you've ever seen the film Notes on a Scandal. It's a sort of challenging film. It's got Judi Dench in it and Judi Dench is a very lonely woman in her middle years. And there's a very poignant scene in the film, where she's lying in the bath, thinking to herself, and she talks about nobody ever touching her, unless they accidentally brush against her when she's getting on and off the bus. It's very moving. And I think it sort of conveys how terrible that can be. And how affectionate touch is very different from functional touch.

Denise 

When we're busy being a carer, we might think that we are touching, we are connecting, but is it perhaps functional rather than affectionate?

Clare

Yeah, to hold someone's hand to lift their arm maybe to wash, is very different to sitting and holding somebody's hand or rubbing some hand cream in or something like that, which might feel very different.

Denise 

And this isn't always either about a couple. This might be between a parent and child; it might be somebody who's caring for an older parent. And still, you know, those hugs, that sitting holding hands, sitting beside them on the couch, connecting, is still really, really important.

Clare

That's right, I don't think you have to prescribe the relationship.

Denise 

And I mean, we often talk at hospice, don't we that whānau being who we choose it to be. So, it might actually be a friend that we need to spend that time with, that we connect with. It doesn't have to even be a blood relative, it can just, it's somebody that's important to us that we need to connect with.

Clare

Yeah, I think that's right, whānau is who we identify. But we also have to recognise that, you know, for the person who is, perhaps in that position of contending with serious health concerns, and at the end of life, the body is still theirs. And, you know, we often have a lot of sensitivities anyway, in our body in terms of core sense of self, and parts of the body that we may feel more or less comfortable in touching. But normally, if we sort of think about what might be socially acceptable parts of the body to touch, it tends to be sort of certainly, we can often touch somebody on the shoulder, even if we don't know them very well, or rub their side of their arm, or maybe touch their forearm or their hands with it. But it's also really important that if somebody doesn't want to be touched that they can say that, because it would be a terrible intrusion to feel like you're being touched and having to tolerate that if you don't wish to, particularly at the end of life. We might feel much more thin skinned, than we might do at other times.

Denise 

Yeah, that's, that is a really good point Clare that we still need that permission, don't we? 

Clare

Yes, that's right. 

Denise

With the best of intentions, we might be right, Oh, yes I need to hug this person. But actually, it may not be what they want.

Clare

Yeah absolutely. So, there's emotional sort of safeguarding around that. And there's also physical aspects, you know, if that person is in pain, but they want to be close and connected, and maybe lie next to a partner, then you know, we need to be really mindful that pain is being attended to. So that that person isn't sort of wincing, and grimacing, and it be an awful experience, because that will be terrible for all parties really.

Denise 

Yeah. When my grandmother was dying, her, all of her grandchildren were around, and we were touching her and holding her. She had had a stroke, so she was nonresponsive, but still with us. And my dad made a comment afterwards about why we were all touching her all the time. And it's kind of brought home to me that it felt right for her. But I know that, you know, if and when my father was in that circumstance, he would not want that. Because it wouldn’t be right for him, you know, and so part of it is us knowing the person isn’t it, and knowing what they might want, if they’re unable to tell us.

Clare

Yes, knowing the person, knowing the relationship, thinking about that context and thinking about, you know, there's a lot of cultural and social norms around touch, and we have to be really thoughtful about it. It may be, within a lot of cultures, you may touch someone if they're the same gender as you, but you might not touch somebody if they're not. 

Denise 

And touch is important, too, isn't it not only for the person who's unwell, but for the person who's doing the caring, and for them, you know, whether it's their connection with the person they're caring for, or perhaps some support people around them. But touch could be really important for them. If they're feeling weighed down, overwhelmed, maybe what they also need is just some loving touch, for them.

Clare

Yes, yes. And some acknowledgement of what a hard job it is. And we communicate so much in sort of look, and gaze, and expression. And we also communicate so much through touch, because actually very profound experiences for us in life are often incredibly hard to put into words. And I don't think we should ever worry about feeling like we can't find the words for something, sometimes a touch does that instead.

Denise

And sometimes perhaps we need to be brave and say, I need a hug.

Clare

Yes, and we have to feel able to and empowered to ask, I think that's a really helpful thing. 

Denise 

And I like to think that I'm in tune with what people might want from me. And I'm a hugger. I'm a toucher, a hugger from way back. But there are there are times I'll say to somebody would you like a hug? Or do you need a slap? And said, in a very jokey friendly way. And, and sometimes it's a bit of both, you know, it's a hug, and then it's a pretend slap. Because that, you know, a hug, can just perhaps make us feel a little weak at that moment in a time that we need to feel strong. So, yes, it's acknowledging that and knowing that the hug is there, and it's been offered, and that sometimes is enough.

Clare

Actually, I remember a colleague talking about having had something happened within their family and say, “Now, don't be nice to me, because it will make me cry. And I'm at work and I don't want to cry”. Fair dos, you know, there's all sorts of situations where we may feel actually at this point, I can't allow myself to crumble. 

Denise

Clare the other thing, and probably this is more around couples who are facing the end of life, intimacy is still really important. And it's something that can just disappear without notice. When there's been a long health journey. People have perhaps been in and out of hospital, there's been issues with pain. It's something where it's gone without knowing it was going to be gone. And that can be a real loss. It's important, isn't it then for people to find a way to still have intimacy, to connect in that way?

Clare

Are you meaning to be sexually intimate? 

Denise 

Well, sexually intimate, but also sometimes just intimate touch? That doesn't have to mean intercourse, does it? 

Clare

Yes, that's right. 

Denise

That can just mean connecting physically, skin to skin, being intimate without perhaps intercourse is still perhaps important?

Clare

That's right. I mean, I think intimacy, we might define that quite individually for some people that may involve sexual touch. Often quite naturally in people's lives, particularly as we age things change a bit in that way. But that intimacy and connection, which defines you as a couple is very important. One of the things I think I've heard most, in my time, in terms of, of doing psychotherapy, and doing couple work, is often that ability to sort of have a spoon cuddle, you know, where you really sort of snuggle up to each other. It may be last thing at night before you go to sleep, it may be when you first wake up in the morning, and that can still be possible, even with severe illness and even right at the end of life. And you know, we often pitch somebody who has serious health concerns into a hospital bed, which is a single bed, it's very hard to give somebody a decent cuddle in a single bed. I don't know whether you've ever tried but it can feel like a balancing acrobatics session. I would only say bringing an ordinary bigger bed into a lounge, say if someone needs to be moved from a bedroom, you know, then that might enable other people to, you know, that that person's partner to hop into bed, and to be able to still, cuddle up to that person, even if they're sleeping separately. The other thing is, is if somebody does need a hospital bed, it's perfectly reasonable to bring in a trundle bed, tie them together, so you have a bigger space to be able to hop in next to somebody and to hop out if that person needs some space and some time to sleep. But to be able to keep your house as normal as possible, you know, I think those things make a difference. Don't make your bedroom the medicine cabinet, and we can end up with bedrooms full of equipment, so it doesn't feel like that person's bedroom anymore. 

Denise

Yes, you’re right because places can become cluttered with all the medical paraphernalia. And Clare, I like your idea where somebody where there is a need for a hospital bed, propping a single bed or a trundle bed, because, you know, if a couple has been together, whether it's been five years or 50 years, if they’re used to sharing a space, to not share that space is going to impact on sleep.

Clare

Oh, it can be terrible. It can be terrible for people. That's the thing that often people will say they find sort of almost agonising. 

Denise

I cared for a family member at home, and he was in a hospital bed, and needed to be. Towards the end, his wife really wanted to cuddle with him and so we moved him over a little bit, to a little more to the side of the bed. And she climbed up beside him on the side. And I popped a chair in behind so that she had some security around not falling off. And she was able to put her arms around him and cuddle as they had done. And that was how he died. And to me, that was beautiful, because they were a very close couple and to have been a part of enabling that to happen, had great meaning for me, as well as for them.

Clare

And you’re right. That's a very simple, practical strategy to avoid a calamity. But the emotional reward of that was priceless.

Denise 

Yes, it was. It was what was needed in the moment. 

Clare

And we really need to remember that. Because I think we can get very caught up with health and safety. And certainly, in the research that I did, that was one of the things that people said was a barrier. Or they were told that was a barrier to perhaps being able to hop into bed next to somebody. So we really have to think about ‘is it a risk?’ Is it a risk that we can mitigate? Is it a risk that, in a way might shame people if we talk about it in that way. And I think we have to be extremely conscious, as health professionals of our propensity to shame people, if they ask us for something.

Denise 

And in fact, we should as health professionals be offering that, you know, making that normal.

Clare

Yeah, that's right. And of course, if that person, if that couple don't want to do that, that's absolutely fine. But that they know that that's an option. And that, people will think about how they can make that happen.

Denise 

Yeah, absolutely. Clare, I have to go back too, I loved your idea of you talked about having a bigger bed in the lounge. And I was thinking, you know what I could see with that would be the cat, the dog, the grandchildren, being able to climb up on the bed and be around the person that they love, in a safe way, without a formal sitting beside the bed, scared to touch.

Clare

That's right. And I remember going to visit somebody, on a community visit, and that's exactly the setup. And I thought, this is really smart. The double bed was in prime position in the living room, you know, right by the fire. The dog was up there, the cat was there. You know, people were in and out, and they'd pop next to the person and have a bit of a chat, feet up, you know, it was a very lovely situation to witness.

Denise 

Absolutely. And that's, that's really what we'd be aiming for, isn’t it? And a feeling of normal in a very un-normal time.

Clare

Yeah, yeah, that's right.

Denise 

One of the other things Clare is often for the person who is unwell, also, is that they are perhaps feeling unattractive, their body image has changed, they may have lost a lot of weight, they may have gained a lot of weight, both of those things can happen with medications. They're less physically capable than they were, sometimes there is an external deformity, perhaps from a tumour or something like that, that can, their whole body image has changed. And that would be another time when so important, to let them know that they are still loved, and they're still touchable.

Clare

Yes. And that, that sense around body image is our core sense of ourself, which is, its intrinsic, it's part of our inner world, and it can be extremely painful for people. And I don't believe in any way, shape or form is that gendered, I think it's part of being human and often, you know, again, sometimes quite, maybe simplistic solutions can be suggested “Oh you know, make sure that that person has their lipstick on” and things like that. But I certainly think part of feeling like the body is important, and body image is important, is to sort of pay attention to, the nicest sheets you can find, not having the bed rustling with plastic, making sure people perhaps have nightwear that they feel comfortable and presentable in. Not many of us would have people come around to our house and we'd be sitting in our jammies or a nightie or something. Often one of the things I think is really hard for people is to have someone come around and they're in their nightwear, but they haven't got a bra on. And they don't like that, or that they haven't got underwear on, you know. So, it's trying to think about that person's dignity, it's often around dignity and privacy. And it's about sort of, you know, if that person's clothes hang off them, that can feel terrible. Or if they feel really tight, and uncomfortable, that can be really hard. And there's that sort of battle between ‘oh there's no point going and buying something because you know, I won't be wearing it for very long’, but actually to feel comfortable in clothing, to feel like you're, presenting to the world in the in the way that you might usually do or feel most comfortable with, is really important. Keeping people's hair trimmed, if that's what they would normally do, you know, those sorts of things can be really important, and most of us would want that for ourselves. 

Denise 

Clare Thank you for this. It's that reminder that we need to ask permission, we need to ask what the person wants, the person who's unwell. But we perhaps as a carer also need to consider our own needs and wants. And so being able to communicate about that is important, being honest about it, that ‘I need a hug right now’. Or ‘would you like a hug, you look like you could do with one’, so being able to be open and ask is probably one of the key things.

Clare

Yes, the communication is really crucial. And to be able to communicate about some of those things, you know you may want to address them spontaneously as they come up. But it can also be useful within a relationship if the person is at their liveliest, and pain free, and in a position to have a conversation to perhaps check some principles out about what might be the right or the wrong thing to do, bearing in mind that we might always change our mind. What might be the right thing one day might not be the next, and as you've said, you know, you've instructed family members as to what you think some of your wishes might be. And that's always a useful thing to do. 

Denise 

 So, talking about some of these things, before someone is immediately end of life can be really helpful as well. And often relationships, we might know well, already, what would be wanted within a relationship, but it does no harm to just check that out. 

Clare

Yes

Denise 

Clare thank you very much for coming in today. 

And thank you listeners for joining us today. 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