B's last week

As I wrote a couple of posts ago, B’s last week has still been playing on my mind. Initially, I wasn’t  sure why but, when I look back, I realise it was actually a very stressful and upsetting week. I think, until recently, I had pushed it to the back of my mind as I found it too upsetting to think about, but I have been talking about it with some of my friends, and I think this has helped me to work through it.

Seeing B deteriorate in his last week was particularly difficult as he was confused and agitated. I knew he was dying, but it felt as though I actually lost him a week before he died. The anxiolytic drugs helped the agitation, although not completely, and I was short on sleep as B was often agitated during the night (I used to hum a lullaby, which helped to settle him for a while), but it was the confusion that was hardest for me to deal with. He was no longer my B, and for such an intelligent person it seemed highly ironic, as well as disturbing for me, that he should ‘lose his mind’. 

I was also frustrated as it seemed as though I had to fight for at least some of the help that I needed and because of this my role as a wife became muddled with that of a nurse. I recognise that, to some extent, this was inevitable as, in the end, I am a palliative care nurse and I can’t ignore what I know, but I seemed to jump between being B’s wife and being his nurse, when actually I just wanted to be his wife. Perhaps my expectations were too high, but on the other hand things that should have been in place weren’t, and I was stressed as I had to try and organise them.

B’s penultimate day was chaotic. I had so many people through the house it was incredible – fifteen people / visits at my last count! In some ways this was good as it meant that services we needed were kicking in, but a lot of it was happening at the last minute rather than being the smooth transition it should have been. 

And, on top of all this, I was anticipating B’s death. All in all, I was distressed, and this caused me to cry a lot, and this in turn annoyed me and distressed me further as I didn’t want to cry in front of B, in case he picked up on my anguish. 

There are some things where I question whether I made the right decision, but I try to remind myself that I did what I thought was right at the time. This is what I used to say to the relatives of my patients. It is all too easy to look back with hindsight and doubt oneself, and it is not usually a good thing, so I have to remember to take a spoonful of my own medicine!

I have since written to two of the services, not to complain but to raise points that can be used for learning so that the services may be improved for others, and I have had helpful replies. This is encouraging and, hopefully, will prevent the same mistakes being made for other families. At least I knew what B needed and was able to initiate it; most other families wouldn’t have the knowledge to do this.

Ultimately, though, B was at home where he wanted to be, and he was able to die at home, which is what he wanted. His last day was very comfortable and peaceful, and I was able to spend time quietly by his side and for this I am thankful. I know he was grateful to me for caring for him at home, and hopefully he was unaware of my struggles going on in the background. His last week probably wasn’t as good as it should have been, but it was good enough and I did my best in (very) difficult circumstances. If I hadn’t been there, or hadn’t had the skills I did, it would have been much more difficult, if not impossible, for him to remain at home. So, in the end, I realise that I need to forgive myself and learn to accept that it was as it was and remind myself: no ruminations and no regrets!