Winging it ;o)
I had a conversation with some lovely people on Twitter today regarding the article on Dementia in the Daily Express (read me).
I read it, and whilst it's bullet points were fair enough, I felt patronised by the suggestions on how to respond to them. I found it to be very simplistic. I do understand that it was a short article and not everything can be put into it or things gone into detail, but Dementia isn't a "One Size Fits All" illness. Christ, I can't find a pair of jeans to fit me properly (must lose weight... must lose weight...) so what chance do I stand with this illness? The comment on how a carer might see getting the caree (even a word?) dressed is a task completed in itself I found insulting. I can't imagine that anyone is going to dress their caree (there it is again - must google that) to look rediculous. Simple tasks become like trying to plug the ocean with your little finger, and whilst the article likens the sufferer to a toddler (which at times my hubby behaves like one), a grown adult with full strength and own opinions can't be placated with a chocolate button like a two year old can (substitute chocolate button with carrot sticks and humous if you prefer).
When I hoover the sitting room it's an easy task in itself. Due to hubby's OCD with cleanliness it's not. Sometimes I might have to brush the carpet first. Then it's hoovered. Then I have to go over the carpet with the nozzle section by section. This is an easy task complicated by his opinions on how to hoover a carpet. The bathroom has to be done with a toothbrush. These things keep my husband happy. It makes my day run smoother by doing them, but it has a knock on effect with everything else that I have to do.
It mentions aggression and that you should try and view it as frustration, sadness, discomfort or pain. We do this on a daily basis. Simple? No. I know it's his illness talking. I know it's "my other husband". The girls know this too. Not so simple when he's trying to hit one over the head with a sweety tin lid, or chasing one around the house because he hasn't finished his rant and he wants to get to the end of it before they leave a room. It's frightening and intimidating and you're just waiting for that ticking bomb going off, maybe not this time but maybe the next. It's like living on a knife's edge.
My mantra for our illness is "winging it". That's what the girls and I do daily. This doesn't mean that what works today will work tomorrow or the day after so you change tac. It's a bit like a game of snakes and ladders. On some rolls of the dice you go up a ladder and have a good day, on another roll of the dice you hit a snake and you have a bad day. It's a game you know you can't win regardless of how many sixes you throw, but you play it because if you don't the ladder would be never ending. I play it because for as awful as it is for myself, I can't even begin to imagine how awful it is for him. I play it because I love who I'm caring for dearly. I play it because he loves me (I know this because he's just told me - and I can't remember the last time he said this).
Dementia Awareness Week is doing exactly what it says on the tin, raising awareness of this awful illness. It's amazing how when you're looking you notice things (like when you buy a new car and you think you're the only one with one, until you're on the road and then they're everywhere). It's just a shame that you have to be in the Dementia boat before you see them - and even then you have to look bloody hard. I only hope that Dementia Awareness Week is just the beginning and that it continues after the seven days. The more people that know about it, are aware of it, and not just the illness but the stigma for the sufferer and the carer the better. Living with Dementia is like trying to hold back the floodgates enough as it is without the ignorance that surrounds it. Hopefully Dementia Awareness Week will help be the cure for Ignorance. Every little helps.