All my posts of late have been very crisis driven and this one is no different.
I’m just waking up after a day of extreme meltdowns and a 15 hour sleep to get over it.
Basically my mother is now in hospital and has dementia which has got a lot worse. the problem is, we have never got on and she has never understood (or believed in autism)
The worse she gets I go through two choices. Not mask as much and she gets very angry. Or mask and I go home and spend a couple of hours having an extreme meltdown. Then around 3 days to recover.
Now she’s in hospital in a ward with other confused people and complete chaos. I’m in a seriously stressful situation that is very quickly going make me Ill. At the time of writing this. I don’t even know how I’m going to visit again after yesterday.
Let me give you some examples.
The first day I visited I made a list of things she wanted from home (I can offer practical help. Not so much emotional)
One instruction was a dressing gown hanging on the back of a door.
So before yesterdays visit I went to her house. looked on the back of a door. Found the dressing gown and took it in.
When we got there I said I have a dressing gown for you. She then said she had one already. ‘Yes it’s in there. I bought one in myself’
‘Oh ok. You said you wanted one’
‘No I’ve got one’
‘I will take this one back then’
‘No I need a dressing gown’
‘But you have one already’
‘No I don’t’
‘You said you already had one in this cupboard’
‘No I didn’t’
‘Ok, we’ll. here is you dressing gown then’
This left me completely lost. I’m fact based and every single fact is changing all the time. Nothing she says can be taken as truth. It’s exhausting and chaotic. Later I asked if the dressing gown was ok ‘clawing for something to say’
‘No I hate this dressing gown. It’s the wrong one’
Her demeanour changed. I had done something wrong.
‘But this was the one on the back of the door’
‘I didn’t want that one. I wanted the one in the cupboard’
Starting to veer into a shut down now ‘but you said the one on the door’
‘I hate this dressing gown. It’s wrong’
‘But it’s lovey and soft?’
‘Someone bought it for me who I hate. I don’t like them and I don’t like this dressing gown. It’s the wrong one’
‘I’m sorry but I got you the one on the door which you asked for’
‘Oh did I? Who bought me this? I don’t like them’
Technically I know that she has dementia and this is what happens but I dont know how to deal with it and I simply can’t cope with it for long periods of time.
On the first visit out of nowhere she said ‘look what I’ve got’
I looked and she had a ring on her finger.
I said ‘it’s a ring’ but she started to get agitated becuase I wasn’t answering correctly.
She burst out ‘it’s your dads ring’ I slowly started to piece it together. It was a wedding ring that she expected me to recognise. And it was on her wedding finger.
Now my dad has been dead for 8 years. They had been divorced for over 30 years. They absolutely hated each other and it was a massive relief when they got divorced.
I didn’t know what to make of it so I said…. ‘Oh. Ok’
I could see the dark clouds descending on her face. I had got it wrong. She went very quiet until we managed to change the subject. if she had any energy I’d have been screamed at.
I still don’t understand what the ‘correct’ response should have been.
The attempted escape
The lady in a wheelchair in the next bed did us a ‘favour’ by letting us use her chair. Then she wanted a favour for us. To wheel her out of the room so she could leave, go outside and have a fag,
We politely wheeled her to the door and she just sat there. Eventually most of the nurses on the ward ended up in a full scale argument with her to get her back into the room on her oxygen. She was very poorly and couldn’t leave but also very argumentative.
We caused an absolute nightmare for the staff becuase we were being polite. It was awful and I could feel myself descending into a full on anxiety attack brought on by the shouting.
We got used because we aren’t used to being in this kind of situation.
Another lady found out my name and kept asking me question after question. Or would just give me unrelated facts.
It was relentless and all the information was completely random and I had no clue how to deal with it.
I totally understand how these poor people stuck in this ward are desperate for contact with people outside of the situation. Unfortunately I struggle with talking to people when I’m already struggling. And again the disconnected conversation put me in a head spin.
No room for autism in a acute care environment
There is quite some time of this ahead for me. And let’a not pull punches. I cannot be autistic in this situation.
My stimming would cause upset in a ward where people have dementia and have had strokes.
Any false move on my part could cause massive upset for my mother or anyone else on the ward. I have to be fully neuro typical in this room. 100% masking is required. It can’t be any other way.
And over all this, there is the real fact that this may be the start of something much worse.