So here’s the thing. I hesitate to blog if I’m not feeling positive, if I’m feeling resentful, tired and fed up. Who wants to hear about the bad times? Sometimes I surprise myself and realise that underneath the daily coping exterior is an angry person. A person who fears the future and is afraid of what the monkey can do. Someone who sometimes wishes they were free to live a life that is all their own. No ties, no responsibilities to anyone else. It’s hard to admit that there are days when you don’t even like the person you care for much and you like yourself even less.
I hesitate to blog about the times in our house when anger will out. When there are misunderstandings and bad feeling, the times when the anger and frustration I believe Roch feels emerges unexpectedly from the hidden place and we are all ambushed by it. Our usually harmonious household is thrown into upset. The times when I cook a meal, hoping to tempt his waning appetite and feel angry when my attempt is undermined by an argument between him and Tom (usually just as I serve the meal) and the food turns to ashes in my mouth. Then I think “Why don’t I just serve up a plate of baked beans for everyone?” That’s nourishing and I wouldn’t feel so disappointed when my stomach churns with upset during the row and nobody wants to eat anymore.
Families have arguments and things can’t be harmonious all the time, and there were lots of arguments before – but the monkey makes it so much worse. It complicates the former dynamic. Roch - strong, confident, manly as father and husband, must now feel that he is losing control. He used to be able to storm out of the house in a rage – now he can’t even move from his chair. A row with his son takes on an extra edge. There are more flashpoints. A task not carried out soon enough, a disrespectful remark, is bad enough when Dad is in the whole of his health. Now he is dependent. He tells me that sometimes he feels helpless, useless, of no account. I am sad that he feels like this but to us he is still a powerful presence, central to our family – we all seek his good opinion and want him to understand us. But he is stubborn, and sometimes it feels as if he wilfully misunderstands us and so we tie ourselves into knots to explain ourselves. If he is angry he doesn’t have the option of storming out as before, so he withdraws. It’s painful for everyone. I think we try to treat him as we would have before the diagnosis, not wrapping him up in cotton wool. I think he prefers it that way.
At the same time – other forces are at work. How long will we have him? Will we look back on these times with regret? Should we have made more excuses for him? Been kinder in our response? Is our anger with him somehow exacerbated by an unacknowledged anger directed at him because he has MND? Are we really angry with the monkey?
Let me not be the one to cast the first stone – it’s not just about Roch being stubborn or angry – I can be stubborn too, and am not above an angry outburst. At those times I don’t see him as vulnerable or disabled – I feel no need to protect him. But sometimes afterwards I do feel guilty. Who wants an angry carer? This is where the carer/wife dynamic gets complicated. The balance in our relationship is shifting.
And for him – I guess on some level he may feel that he can’t afford to alienate his carers, especially me. So after an argument he won’t ask for help if he is angry with us – it must take a major pride swallowing exercise to call your carer and ask for help going to the toilet after words have been exchanged. How he must hate that. And I hate to offer help in a mood of resentment.
As for his relationship with the children – I don’t want them to have memories of “Angry Dad” – but I suppose I can’t avoid this. They will have other memories.
The MND Association have an Optimism campaign – and I totally get this, but I think it’s another reason why I hesitate to post negative feelings or report negative thoughts. There’s a whole debate about this. I agree that people newly diagnosed and their families deserve to be introduced slowly to the realities of Motor Neurone Disease and so in terms of hard-hitting publicity campaigns, I see that these could be potentially terrifying.
But as we get further into this (and we haven’t reached the ‘messy’ part yet) it will get harder and harder to take a positive view. Of course you have to maintain a positive attitude just to get through the days but we can’t be blind to the hardships and reality of the disease, whether physical, emotional, social or financial. In general, people don’t know enough about what it’s like to live with it and I don’t want to collude to protect everyone from the reality - sometimes I really have to be honest and say that this whole thing sucks and report on the days when you couldn’t be positive if your life depended on it. As my mother says, “There’s nothing good about MND.” We all have good days and bad days and we are all of us doing our best to get through this. I can’t say I’ll be the same person afterwards. It’s a painful journey and everything in our lives is made more complicated and more difficult because of the monkey. It’s a filthy, vicious little animal and let’s not ever forget it.