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Reflection on intimacy at the end of life

30 June 2014

I work as a health care assistant in the community, looking after people who are at the end of their lives and have chosen to die at home. Doing this work made me decide to start my nursing training as I want to eventually work as a nurse in End of Life care, ideally in the community. Although I am now a nursing student, I still work the odd shift as a HCA in the rapid response team, just to keep in touch with the reason I am doing the nursing training.

Of course at university we have been told all about the Activities of Living by Roper, Tierney and Logan. One of them is Expressing Sexuality/Intimacy. This aspect is often overlooked, especially in End of Life care. Many people find sexuality an uncomfortable subject because they focus on the SEXuality. But expressing sexuality also involves intimacy with your partner. Holding, kissing, sleeping together, hugging. All of those things are part of sexuality.

Today I looked after a young man* who is dying of cancer. His hospital bed has been set up in the bedroom next to his double bed where his wife sleeps. Imagine sleeping with your partner in one bed for years and then when you most need to be close, when you are going to lose the person you love, you can not lie with them, hold them and feel them. You can only look at them at night, as they sleep in a cold, noisy hospital bed a couple of feet away from you.

As nurses, we can sometimes be too focused on making the patient comfortable. Once we have achieved this, we are happy. Sometimes though, physical comfort is less important to a patient than emotional comfort. I asked the patient if he would like to be in bed with his wife for a while. In his own bed, with his own wife. The young man said he was too tired for it at the moment but his eyes lit up. He had not realised this was possible. Nor had his wife who had tears in her eyes when I explained it would be perfectly possible to transfer her husband for an hour and then, with our help, transfer him back in to his hospital bed again. To give them the chance of feeling like husband and wife again for a precious hour.

It is easy to forget how important such small things can be to a patient and their family. Yes a hospital bed with an alternating air mattress is of course what the patient needs. But does that mean the patient must stay in that bed 24/7? What is the ultimate aim of enabling people to die in their own home: to feel surrounded by those they love. And what better way to do this than to enable them to have physical intimacy with the person they have chosen to share their life with? Sometimes we have to think a little outside the box.

Today's experience also demonstrated how my personal experience is shaping my view of the kind of nurse I am becoming. When my partner was in her hospital bed in my bedroom, it was one of the nurses who suggested I should spend some time with my partner in our bed. I did not know this was possible. I thought I could only have a cuddle by squeezing myself on to the hospital bed and trying to sleep like that. But the nurse said that was ridiculous and together (using correct manual handling techniques and slide sheets, I'll have you know), we moved my partner on to our double bed.  I nestled myself in to the crook of her arm as she slept on her back. We stayed like that for a couple of hours. Then I called the rapid response nurse and together, we moved my partner back on to the hospital bed. I remember how that felt. Not just the time we spent together in bed, but also the fact that the nurse understood that this mattered. The nurse understood we were first and foremost a couple. Two people who shared everything.

I had forgotten about that experience until today. And when I saw the look on the patient's face, I remembered how important it was for me back then. And how important it was for them today. In those small, short moments, I think that maybe, just maybe, all that pain and suffering will end up making somebody else's death a little bit better. What a fantastic legacy to leave.

Here is a lovely article on intimacy at the end of life.

* Details have been changed to maintain confidentiality


Marty Tousley, CNS-BC, FT, DCC said...

Outstanding! Thank you for this ~ and clearly you're going to become one terrific nurse!

hodders said...

You're still writing well M, and I've been a long-time reader of yours. Well done.

BunnyFactor10 said...

Hello! Long time now speak. How are things for you? Thanks for the compliment.

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