It’s the loneliness that gets you/where's the support?

My last entry began with, ‘It’s been a tough old week.’ It has. I’m knackered.

I returned to work after half term just 6 days after my minor surgery. I was a little bruised and tender but otherwise pleased with my recovery. As I’ve already said, because of my employment insecurity, I feel the pressure to always perform but, to be honest, I tend to take a personal pride in being ‘Ms Reliable’ and not allowing anything to interfere with my work. It’s tough for me to perform at anything less than excellent.

Going back to work was more tiring than I expected and I crashed on the settee within an hour of getting home each evening. For me though, it was a small trade-off for my pride at being able to perform at work.

Anyway, I received a text some time after 11pm during the evening of the day after surgery. It was from a friend; her son died of cancer last November and she was struggling. I called her. We talked until 2am. Despite my tiredness, it was good to provide a listening ear. I know only too well that the pain can hit the hardest during the wee small hours when one can feel so desperate and so terribly alone. At one point, she repeatedly apologised for not being there for me when Al died. “I didn’t know how bad it gets. How could I let you down? How could I not know? How could I just leave you to cope with it all on your own?” I told her it was OK – she couldn’t have known. The truth was that I was both relieved that she now knows and that I do have someone close by who ‘gets it’, and guilt ridden because my relief stems from the fact that she had to lose her beautiful boy to be able to 'get it'. She now hurts and that’s horrific. The truth, we both agreed, is that unless others have lost a child, they are highly unlikely to have any sense of the anguish.

The worst thing about losing a child is the loss of that child; the loss of their future, and the one you had with them, and the loss of your hopes and dreams. The next worst thing is the realisation that really, no one gives a shit. They say they do – and OK, they do for the brief moment that you cross their minds. But then it’s gone and they get on with their lives without another thought. Not all are like this but even those who make more of an effort and have some empathy are able to escape it. They don’t have to live with the all-encompassing enormity of it. They can switch off and focus on the mundane. They can go back to their own lives. And that's as it should be.

However, the bereaved parent can’t because it IS their life. And that's NOT as it should be - for us, there is no escape.

My friend and I talked over that aspect – it was partly that realisation that had precipitated her text; the sheer loneliness of being a bereaved mother and the anger and hurt from being ‘dumped’ by others - professionals and others. Sorry your son’s dead ... Goodbye ... now, what's for tea?

Last year, I’d created a bit of a fuss when I realised that there was no support available for bereaved parents. Eventually, (accidentally) I discovered the existence of a Child Bereavement Support Nurse (CBSN). She visited me and listened to my story, visited again and introduced me to the Police trainer for Family Liaison officers, gave me a couple of numbers of charitable organisations that might be able to provide counselling and that was the last I heard from her.

I was horrified that no one from any of the statutory services had bothered to offer any support to my friend so I offered to try to get some phone numbers for her. After dropping my daughter at school, the first thing I did on Monday morning was to try to contact the CBSN. I called the hospital but they didn’t have such a post listed. The switchboard tried to put me through to the Bereavement and Organ Donation office but there was no one there. “Oh dear – it’s past 9am there should be someone there – would you like to ring back later?”

Oddly enough, No! I didn’t want to call back later. She tried someone else ... who passed me to someone else ... who passed me to the midwife who dealt with bereavement. It was a little closer so I explained my issue.

Frustratingly, it would seem that if your child dies during pregnancy or soon after being born, you can obtain all kinds of support but any longer than that, and you’re on your own. Shit! - now I'm actually jealous of mothers who have given birth to a stillborn child. I'm not a monster - so why do I feel like one for even thinking that? - I don’t begrudge the support that these mothers get but what about those like me. Anyway, she was unapologetic and seemed disinterested. I was angry. She said that at some point, we have to start doing things for ourselves and maybe I should let this mother sort it out for herself.

Blimey! All I was doing was trying to get a phone number to save a bereaved and distressed mother from exactly this kind of run around. She hinted that I was ‘rescuing’ as she talked about how it would be better for this mother to be ‘empowered’. I got the feeling she’d done her 6-week ‘Introduction to counselling skills’ and therefore saw herself as some sort of expert. Silly cow!

I could understand her comments if I’d offered to counsel my friend, or completely taken over but from past experience I knew that the person required would not be easy to locate. I also knew that my friend was at a very low ebb and did not need the further stress of being passed from pillar to post and going through numerous people, including this midwife, just to be patronised.

Eventually she offered to speak with the CBSN and to get back to me. Later that day she called to tell me that the CBSN was off sick and she wasn’t sure when she’d be back. I asked about her associate – I knew there were two of them. She seemed surprised. “Well I can ask her to give you a ring if you want.”

Duh! Heroically, I resisted the temptation to scream and instead managed to say, “Yes please that would be useful.”

Later still I got a call from the other CBSN who told me that they only deal with cases of SUDDEN child death. However, after I explained that this wasn’t such a case she rang round a few places and got back to me with a number. I then passed it to my friend who was touchingly appreciative.

I was just pissed off by the whole episode. Where is the compassion? Where is the humanity? And now all I can think of is just how alone we really are. The unnoticed group of bereaved parents. It’s the loneliness that gets you.