Carer
Day 4745
If E gets up before me I don't have a bath or a shower. It will be very stressful to prepare his breakfast, pack his school lunch, clean... I would have to start chasing him around the house. I would most likely have stress filling up my belly for breakfast, instead of a snack.
Without his breakfast set up he would move fast from fridge to snack box grabbing whatever he gets his hands on. He would wash his hands 6-10 times in between. He will also move from room to room creating mess. He will climb furniture. It happens fast and I need to stay calm. Any thought of ‘what he is doing to me’ or ‘I'll just clean that’ are pushed away for the ones of ‘is this worth interfering?’, ‘he is suffering, it’s not his fault'.
If I do step in to interfere it's because what he's doing is not safe or because I can see that this action is for attention or for my reaction. If I pick the wrong time to interfere he will then fixate on the activity, obsessively wanting to engage more in it. This then becomes complex to deal with.
The sound of a school bus coming to get him is the most anticipating tune of the day. It’s like someone saying ‘let me take over for a few hours, go get a coffee’.
Well, as lovely as this sounds, it’s not always the case. Cold coffee between clearing the mess he created, dreaming of dipping my painful body into a hot bath while trying to unblock the bath from the toilet paper roll he drawn in last night, and planning ahead. Thinking of objects and activities that can keep him occupied after school so that I can attend simple task like serving dinner that needs to be ready before he gets home.
Each box of activities buys me minutes. With an attention spam of 3 seconds one needs a lot of these boxes for one afternoon.
In the past it was easier to take him to the park for a long walk and burn out with our dog, cocoa, who is overlooking every step he makes. With my injury, now I can’t walk with him. He is too fast and I am too slow. I have lost him way too many times to take the risk. Also there is the possibility of re-injuring my knees and I am trying to avoid surgery and not make it even harder to manage the basic day-to-day madness.
When the school kindly agreed to take him despite him not been fit to go, it meant that I could attend the emergency appointments with E’s psychiatrist. The day goes fast. We are trying to decide on suitable medication to ‘slow him down’ and allow some sleep. Everything else has been explored and didn’t work. Finally prescription is issued at 2 pm and what’s coming next is very unexpected.
It helps to have a visual memory and recall all the pharmacies in north London, but after 10 visit and 5 calls I learned that no one had the medication in stock.
Time is ticking till he comes home and my though is that the Royal Free hospital will surely have this. It’s a hospital after all. After a dissapointing call I go home depleted, flat out tired and with no medication.
It feels like I only blink once and he is back and then the commotion resumes.
Dinner is now late so I am having to ‘interfere’ more and more to keep him away from the hot oven. Because I interfere it fires back and the anxiety levels are going up. By the time dinner is ready he is in a state of emergency. I miss out on my meal again.
All the doors to the other rooms are locked to maintain him in one place so that I can overlook that he is safe.
The smell of ‘adrenaline sweat’ is overwhelming the space and as the phone rings, a high pitch scream emerges. My pharmacist managed to get hold of 1 pill that can help tonight. Hard decision to get him in the car with the hope that he will stay still. Am I fit to drive? Sleep deprivation, headache, drowsiness.
Somehow the car is providing some sort of sensory stimulation for him so to me it’s like a respite. We are both seating in one place for a change.
The road to the pharmacy was not long enough so after collecting the meds I decide to drive around as this is potentially the only brake I will get till later that night.
What I haven’t thought of was that I am preserving his energy for later. The moment we are out of the car he is running and we resume the fast tempo till late hours. If I was to film it, it would look like it’s indeed a fast forward recording.
I often wonder, how many miles a day does he do just walking back and forward in one space?
The medication doesn’t seem to work!
11 pm and I am so tired I don’t know how to keep myself awake. He is moving around his room and it’s not fully safe to leave him alone.
He had walked out previously in the night in pjs and the police found him. The doors are locked but I am still unsure if I can allow myself to fall asleep or not....
Day 4746 has already started and I haven’t had my yesterday's breakfast yet....