The title is a tenuous link, but bear with me....
Having just had a lovely week away in Ireland i have spent the "Royal Wedding" bank holiday weekend in Yorkshire at my parents, this is something i was nervous about, and also find difficult to write about. I don't want to offend, but also do need to paint a realistic picture.
The whole time that Kevin has been ill (he was diagnosed with cancer in December 2004) my mother has also been very ill. Just after Kevin finished his first round of chemotherapy my mother had her first stroke. This was in the July of 2005, followed by another really bad one in the September. It was then discovered that she had had a number of ischemic attacks, and the one in September was hemorrhagic (apologies if the spelling of either of these is wrong). Unfortunately the treatment for one causes the other, in other words there was nothing they could do. Over the past 6 years my mother has become more and more debilitated with multi-infarct dementia. She is now unable to do much more than eat (she has to be fed), sleep and bodily functions (she has been in a wheelchair since September 2005).
Over the years in between Kevin's treatments i have taken time off to also go and look after my mum so my step father can have a break. At first she would talk to us, her short term memory was bad, but she knew who we were, now she nods sometimes, occasionally says yes or no, but that is it. These responses are also intermittent so it is hard to know what she takes in, or doesn't.
Kevin was so accepting of his illness, and this has helped me to be very matter of fact about medical conditions. However, i regret to say that my step father's approach is very different. He insists that only her outside body is affected and that mum hears and knows everything we say. I am not convinced. The last time i went to Yorkshire before Kevin died was in September last year. I went on my own, i left Kevin and the Menace with a team of support around them in case it was needed. Before that we would go sometimes as a family and my role would be to look after mum, Kevin would keep the Menace amused and we would do our best to "keep up appearances". I would always end up very tense, not surprisingly Kevin never really enjoyed these visits, and afterwards we would either end up in fits of giggles about the situation or have a huge row. Here is why:
I come from what Kate Fox* would class as a very middle class family. My step-father is ex navy, my own father was ex-army. Standards and protocol must be maintained at all times. There is a table cloth for breakfast, not for dinner. There must always be a jug of water, etc. No illness or small children affects this standard, we maintain them at all times. I obviously don't maintain this in my own home, i think mealtimes should be enjoyed and relaxed and with it just being the Menace and myself we tend to get up for what we need, eat, chat, get down, enjoy. As Goffman** states small children are not good for maintainting the pretence, and the Menace finds the formality constraining, this was kind of manageable when Kevin was there, not so easy now. Mum takes about two hours to eat her meal, and i don't want Dennis to have to sit through the whole thing (in fairness he is not expected to, but it is a very long adult meal, nonetheless). I am also aware that when we are there, Dennis finds the attention i give to mum hard to watch, he tends to whine and get "needy"(this is hardly surprising after everything he hs been through), i have resolved that i will not go unless there is one of my siblings there and other children for him to play with.
This time my step-sister and her husband and daughter were there. The Menace has company and we were all able to muck in and maintain the levels of performativity. I'll explain: Foucault*** explains social constructionism through society's need to problematise issues (saying what is wrong, helps us to define what is right) and politicise them. My step-father has been a carer for 6 years, but prior to this was a business man, and an navy officer. He has turned problematising and politicising into an art form and a hobby/ habit. Everything is treated with the same level of detail (Foucault emphasised the importance of detail), from deconstructing the state of the nation to how many beans, cut in what style and cooked for how long.... we must have. Not only are we judged by these exacting standards, but also by the behaviour or our dogs (mine isn't that well behaved), i know that if i blow a whistle, it is unlikely my dog will be sitting at my heel, ready to jump through a hoop on the next command, so the only way i felt comfortable, was to run to the top of the nearest hill (it is quite steep) and let the dog off his lead so he could have a run, and then come back both myself and the dog exhausted (hence the tenuous link to the title - by the way this run took me an hour and a half each time). All of this demonstration of enthusiasm and attitude is a great distraction from the real issues. These are:
- My father feels isolated and lonely, he is angry that he has to make all the difficult decisions about my mother's care. (Legally this is up to him, none of us can do anything without his permission) He has said before that he is fed up with making decisions, but i have tried to take them off him, he will not relinquish them.
- My father is bored and frustrated with his life of caring.(The detail and care into everything is a way of holding onto the life he had before he became a carer - these are important to him as a symbol of his position and status, hence he wants to hold onto them)
_ How much is my mother really "in there"? Is she happy? (These are the really difficult questions, that we are all trying to avoid asking, because we can't answer them. I would like to point out that whilst i have vented my frustration at the silly things, as a family we are all doing that because facing these "big" things is too difficult for us all to do. I assume this is natural behaviour (having done this over my husband's and my mother's illness for 5 years, i know no other way)).
I really missed Kevin on the journey home - i had no-one to deconstruct the weekend with, no-one to sound off to. My poor friend who came round that evening got a bit of an ear bashing. I had an appointment at the GP the next morning, he said i had raised blood pressure, i have to go back in a week to see if this is a false reading or not. Ireland may have been relaxing as it gave me a chance to escape. Yorkshire was less so as i had to confront things.
Oh, and the molehill bit - i am not very good at all the funny little games we construct to help distract us from the "big" questions, they all seem a bit meaningless in light of other issues.
References (desparately trying not to be too academic so flouting the conventions of referencing slightly)
Kate Fox (2004) Watching the English: the hidden rules of behaviour. Hodder and Stoughton Ltd
Erving Goffman (1959) The presentation of self in everyday life. Penguin
Michel Foucault(1975) Discipline and punish: the birth of the prison. Penguin