I first published this blog back in October last year, but it seems a good one to reblog……
No one gives you a handbook when you’re diagnosed and one of the most difficult things for couples and families to accept is that you will need help and support and ‘training’ on how to support a loved one with such a diagnosis. It must be a difficult concept to come to terms with. After all here is someone you may have lived with for 20-30 years – why on earth would you need training? But why wouldn’t you need training on how to support someone with a complex brain disease?
Training and support for couples and families in the practicalities is something else that’s sadly lacking post diagnosis.
It got me thinking about how lucky I am, in many ways, to live alone. It’s a family joke that my eldest daughter, Sarah, moved out of my home on the day I was diagnosed. This wasn’t due to Sarah ‘running for the hills’ at the prospect of what lay ahead, but a happily made decision to set up home with her partner at the time.
However, it was actually a blessing in disguise. When you live with someone, it’s quite natural for one to move things around, tidy up, be messy – all of which would be unhelpful for me.
It’s human nature to do things for the kindest of reasons but which would annoy the hell out of me in reality.
I’m an independent kinda person who likes to be left to her own devices. I used to be really tidy and not have papers everywhere, however, if I now file papers away, they no longer exist. So By my chair, at the moment, are various bits of paperwork where the subject matter is still outstanding. All the paperwork that would normally get filed away because I would remember to deal with it is still there until it’s happened – then it can be filed away.
I’m fortunate in so far as I was always an organised person so I havn’t had to learn that new skill.
The worktops in my kitchen are far more cluttered than they ever used to be. Each week I lay out paperwork that I need for the coming week for events I’m attending. My calendar gets stuffed with paperwork relevant for each month so I don’t forget to deal with it.
Notes lay strewn everywhere to remind me to do things or as a reminder that something is happening.
If there was someone else living in the house, it may become impractical or seen as a nuisance, maybe annoying or something may get moved accidentally – all of which would lead to confusion.
I don’t have someone rushing me or questioning why I can’t remember something.
I don’t have to give excuses or reasons for my action.
I don’t have someone doing things for me because it’s quicker
I don’t have someone fussing when I’m having a bad day
I don’t have someone urging me to eat when I’m not hungry
I don’t have to think whether I’ve upset them
I don’t have to worry that I’m having to do things differently
I don’t have to worry about being slow
I don’t have anyone correcting me when I get the wrong word or date or name
I don’t feel like I’m letting anyone down
I don’t have to justify why I’m behaving as I am.
However, there are things that I miss…….
I don’t have that hug available when things go wrong
I don’t have that someone to help jog my memory
I don’t have that support when I find things difficult
I don’t have that back up brain to remind me
I don’t have the constant company
I don’t have that someone to laugh with
I don’t have someone to switch off the cooker when I forget…..