I should point out before I start that there is no humour in this post; no laughs, no irony. It’s remarkably low on fun stuff, so it would probably be best if you turn back now. I’m not normally given to over-personal blog posts, but this past few months have been a tough time for people I care about. Not sure why I feel the need to record this, but I find it strangely comforting to do so; that will have to be reason enough.
I have slipped away upstairs for a little while to start writing this. My mum is downstairs at the bedside of her husband (my stepfather?… Not sure if that is the right term to honest as we never really had a parental relationship). Anyway, he was diagnosed with cancer of the oesophagus 8 months ago. He’s over 80 but underwent & survived very long and complicated surgery to try and remove it and give him some quality of life. He has never really recovered from the surgery as he should have done, and as is so often the case this vile cancer has taken hold elsewhere.
It’s been a long hard eight months and it looks like we are reaching the final hours. The house is full of his family, which I am sure must be some comfort although he is pretty much unconscious most of the time. The automated syringe driver ensuring a constant stream of pain killers & anti-anxiety drugs are flooding his system. I barely know anybody here, but am here for my mother’s sake, so I have slipped away and am sat at the top of the stairs, quietly tapping away into my iPad.
So where to start? My relationship with J has had it’s ups and downs over the years I suppose. I think we eventually settled on mutual tolerance. Actually that’s probably being a little unfair; I think he basically likes me, just just finds me a bit odd. I have tried to tolerate his views but found some of of them too difficult to bear. Consequently I have stayed away more than I should have over the years. Sadly my pig-headedness has led to a fairly strained family relationship at times. Not something I’m particularly proud of but you can’t change the past, only the future. Anyway in thirty years he never raised his voice to my mother and has loved her to the end. I guess in the sometimes complicated machinations of family life that’s as much as you can hope for. I only mention this for the purposes of full disclosure… Families are complicated beasts, nobody’s circumstances will be the same as yours.
We have tried to help and support as much as we can over this period, but ultimately the weight of responsibility and 24/7 care has fallen to my mum. It is only reflecting now that I realise how much this has taken out of her. I’ve seen friends go through this with their parents too and Its never easy. So god (or deity of your choice) forbid you should find yourself in a similar situation, either as a victim or primary care giver, these are my meagre unqualified and unsubstantiated observations…..
1. Cancer is a vile, relentless disease. It shows no pity and rains nothing but misery, pain and heartache on everybody who comes into contact with it. Not only does it drain the life of the victim, it chips away at the spirit of those closest to them as well. It’s a glib and obvious thing to say but nonetheless true. I guess it’s always good to know your enemy from the start and be prepared for every eventuality, good or bad.
2. Whatever help is offered, take it. Don’t be proud. It’s a hard road and impossible to negotiate without help. I wish I had done more to help. Still not sure what, but it nags at me that there is something I didn’t do. So don’t be afraid to ask for help. People generally want to feel useful, want to feel they are doing something to help. So just ask, don’t be stoic.
3. Think long and hard about how you want to spend your final weeks. Electing to die at home may seem like a good idea; a safe comfortable environment. However, you need to be aware of the pressure that puts on your primary care giver. You will be reliant on a thinly stretched district nurse service for support, and most of the heavy lifting, literally, will fall to whoever is with you. This puts an additional physical strain on the carer, which makes the psychological and emotional burden even harder to bear. If the opportunity to take advantage of a local hospice is there, then take it. Pain will be better managed, and the carer will be better looked after. I may be wrong, but I’m sure that if a hospice had been involved these past few days would have been pain free and considerably more dignified than they have been. But as I say, that’s just a personal opinion.
4. My final point is perhaps a little more general, hopeful even. The image which sticks in my mind most vividly these past few days is that of my mother holding J’s hand, not prepared to leave his side for one second. I’m not generally gushy or over-sentimental, but every time I see that I catch the back of my throat. It’s a powerful thing, it kind of stops you in your tracks. I just hope, and god forbid this is never the case, but if I were in a similar position and could show an ounce of the commitment, fortitude and sheer force of will that my mum has demonstrated over the last eight months, then I would at least be able to look myself in the eye and feel I was a decent human being. At the end of the day I don’t think we can ask for much more than that.