OK a little update / emo dump. Thanks for listening and the man / lady hugs.
Since I last updated this thread a lot of really nice things happened. Most importantly I got my wife home Tues. Getting her back to familiar surroundings has really helped her.
It’s been an emotional rollercoaster.
The good stuff:-
– Follow up calls from her GP
– Follow up calls from the Macmillan concerning her cognitive / speech therapy
– Support from FGK Jr’s school after we told them what was going on
– Overwhelming support from friends and family
I went into work Weds. Tie a few things up. Talk to my team tell them what’s going on. It’s a small / medium company so I went to talk to the Director amongst other responsibilities is HR, ‘take as much time as you need, we know you won’t take the piss’. Good enough for me. Big relief.
The big thing that is so tough is my wife. She’s in there somewhere. Sometimes it’s absolutely her in front of me. Other times it’s someone like her but her best and worst traits are absolutely exaggerated. There is no middle any more. At least she recognises me and my son. When we walk to the school bus stop in the morning she can absolutely pull it off with other parents conversationally like no-one would know anything is wrong – although most know her diagnosis. She can steer the conversation in a way that she can talk about stuff that won’t trip her up. But we get home, she’s exhausted, and barely making sense.
And then she gets frustrated, because she knows she’s not communicating great, and anxious about a little thing, and we’ll talk about that same thing that I’ve sorted for 6, 7, 8 I don’t know how many times. I smile and say it’s sorted and then we talk about the same thing again. Which is heart-breaking and exhausting.
She’s really self-aware. We can have a laugh when she can’t communicate things well. She’s called my son ‘daddy’. Children are parents. Parents are children. She’s asked us to tell her when she gets things wrong so we do. With a smile.
The simplest tasks take a long time. I could just crack on and do them myself. But she doesn’t want to feel like she’s useless or unwanted. So I go along with this, until it’s time she needs a rest, or frustration gets the better of her, or me. So I do it anyway. Decisions like what’s for lunch or evening meal aren’t happening they are up to me.
Today was new bike day for my son. He’s now riding a medium sized adult bike. My wife and I went to the not so LBS about 30 miles away. It’s a nice town, we had a mooch, a coffee, did normal shit like we did before she got diagnosed. Picked the bike up and surprised my son with it when he got home. A new bike day is a good day right? It was nice to do some normal stuff today.
I’m very aware I need some me time. I’m gonna find that time soon.
Sooo much stuff I could say. I’m glad I haven’t had time for the ‘what if’ thoughts or time to Google brain tumours. Monday we have an appointment to talk to Jr’s teachers. But they’ve been excellent already, calling to ask if Jr was aware of the diagnosis (he is), and arranging a ‘wellbeing appointment’ for him at school on Monday.
Then Tues / Weds we wait for the call from the experts to understand what next…
I’m not a big drinker these days. Fridays / Saturdays mostly nowadays. I allowed myself 3 bottles of IPA tonight. Sorry if I’m rambling. Thanks for listening.