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Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

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

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Grief strikes again

20 June 2014

And just like that, I am on my sofa, looking at my computer screen, crying my eyes out...What happened?  It is 3 years since JD died and I think I am pretty well 'done' with grieving. I thought I no longer needed to visit a place I have been with JD, before I can go back there with someone else without getting incredibly sad and spending all my time thinking about JD.
 
I have spent a week in Normandy with JD in 2009 (see these blog posts). She had finished her course of radiotherapy and her hair had sort of grown back. My parents drove all the way from Holland to come and see us for a day. After a week or so, we drove further along the coast and ended up camping in a place called Malestroit in Brittany. Lovely campsite. We had a lovely time. But it was also an emotionally difficult time. I was constantly on alert, looking after JD, making sure she was OK, in charge of everything as she could not remember things very well etc. It was all very poignant. The last time we had a holiday before being told there wasn't really much they could do about her brain tumour anymore.

In the past few years, I have found that in order for me to be able to visit 'poignant places', without bursting in to tears all the time, I need to visit them and put JD to rest there. If that makes sense. When I went to Cornwall in 2011, 3 months after JD died, I wailed, howled and cried.And when I came home, I felt at peace with Cornwall. I drove through Buxton in the Peak District, to remind me of our visit in April 2009. It helped me 'reclaim' the place and I had no problem being in the Peak District with Fiancee in 2012. My theory is simply that once I have 'done' a place without JD, I can see the place on its own again. It is no longer ONLY a place where I went with JD. It goes back to being a place in its own right. Some places have very emotional memories and will therefore need a visit before I can go back there with anyone else and enjoy it. Other places are fine and can be visited right away. I may feel some sadness but nothing too big. Nothing that Fiancee says she can not deal with.

So, what does this have to do with Fiancee and getting married? We thought it would be nice for us to go away camping for a week or so in August. It has been a long year for me at university and with the wedding coming up, we can both do with a week of just sitting in front of a tent, reading books and doing nothing. Sure, I thought. How about Normandy? Not too far away and still very much France. Let me go and look for some nice campsites, I said. I thought it would be fine. After all, I could just pick a different campsite from the ones JD and I had been to.....

Wrong. As I was looking at a map of the area, I spotted Fecamp, the town where JD and I pitched out tent on our first night. And suddenly I burst in to tear. Not the silent ones that delicately run down your cheeks. No. Proper crying with noise and throwing head back and all. WTF? Why? Why such a strong reaction? I felt actual fear at the thought of going back to Normandy. The idea of crossing the Pont de Normandie, the place I stood with my folks and JD; walking along the gorgeous harbour of Honfleur....when I remember the day spent there with my folks and JD, having a lovely lunch. Actual fear.

Even the thought that I would not have to go and visit these places just because we would be in Normandy did not help me. Because I felt that if I was in Normandy, I would have to go and put these places to rest, to reclaim them for me. And that felt like a terrible thing to do to Fiancee, only a couple of weeks before our wedding. So I told her I could not do it. That we may have to go to Cornwall or another place that I am perfectly happy to go to.  I told her I may need to spend a few days in Normandy on my own at some point. Just to even make it possible for me to drive those roads again, to see those places, to shake off the overwhelming link with JD.

Grief is a bitch. It strikes when you think it is all done and dusted.
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Three years came and went

10 June 2014

Last month, on the 30th of May, it was three years since Jane died. As every year, I was feeling depressed in the run up to The Date. It is strange how that works because I always feel like it is not particularly bothering me. And yet I always seem to have a sense of depression that starts the first week of May and abruptly ends on the 31st.  There is always something that seems to make me depressed. University work, or, this year, a placement that was incredibly difficult and made me want to quite the course at times. I feel low and sad but not about anything in particular. Nothing especially Jane-related makes me weepy or blue. It is just a month of feeling grey: nothing much interests me, no major emotions, good or bad. Towards the end of the month I always think: and then on top of this, it is nearly The Date.

This year, I realised it is the other way around. What happens is that my mental immune system simply gets low in May. Even if I am not particularly thinking about Jane and the things that happened 3 years ago, I guess the month of May just will always bring a blanket of grey to my feelings. So things that I would normally shake off become a lot more difficult to deal with in May. The 30th of May does not mark the crescendo of these feelings. It marks the cause. Subconsciously I must just be spending the month thinking about The Date that is rapidly approaching. And when The Date arrives, it is all over. Things go back to normal.

So much so that when my dad called on June 3rd (my wedding day) to tell me he and mum were thinking about me on this special day, I replied: what special day? In my defence, I had come off shift about 2 minutes before and was walking through the hospital corridor so I had no time to think about Jane and what date it was. My first thought was: oh, he must mean today was the day of her funeral. And that date is not a date that holds a particular emotion for me. So I dismissively said: Nah, this day is not a problem. My dad sounded a bit surprised by this and said: I guess we all deal with this in our own way. It wasn't until a week later that I suddenly thought: OH SHIT! That was our wedding day he was referring to, not the date of the funeral (which was actually on the 8th June). No wonder he was a bit surprised by my fairly blunt: Why would this day be especially difficult?

The first year, each day held its own significance. I remembered exactly what we did and when. So the 19th May Jane went in to the hospice, she died on  30th of May, our wedding day was 3rd June and then the funeral on 8th June all were reasons for me to be especially sad. But as time has gone on, it seems that all the sadness is focused on May 30th. Everything comes together neatly on one single date.  I think that this realisation will help me next year. I will help me not to think I am suffering from major depression. It will help me to accept that I should probably not make Big Life Choices in May. It will help me to accept that in May, I will be sad about Jane, even if there is nothing in particular that is upsetting me. It will help me to say to Fiancee: "I don't know how sad I am going to be but I will most likely be either extra needy or more distant this month. Please stick around, it will be fine once it is June."

Like a flu jab, I can protect myself a bit better. There is still a chance that I will be sad for the whole month, but knowing why will help me to feel less surprised about it. And if I have learned anything from the whole Widow Thing, is that the best way to deal with emotions is not to push them away but to open up my arms, stick out my chest and shout: Here I am!! Hit me with it.
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