in A&E (Title of a TV programme in the UK)– with my dementia……..
04:45 Early start today as I’m going down to London on the silly o’clock train….reminder has gone off telling me why I’m up at silly o’clock….straight into shower
05:10 Making a cuppa and sitting to allow the brain to engage. It feels a good day….Tablets are next to the kettle as a reminder…..Today it has to engage quickly otherwise I’d normally be up 2 hours before I need to be out, but then there wouldn’t have been any point in going to bed when it’s an early start!
I’ve packed the night before and have everything out on the side that I need. Clothes had been selected and were all out ready. Everything I need is beside the front door so I fall over it on my way out😊
05:30 Alarm goes off to remind me the taxi is coming at 05:40, so get my coat and shoes on and wait, closing the door so I don’t get distracted and start doing something else……
05:40 Taxi man drives by to turn around, waving at me as he goes by. The taxi firm is wonderful. They know I have dementia and are always helpful and kind.
05:45 – No traffic, so we arrive at the station at 05.50. In winter, it’s not a nice place to wait in the dark, but today is a lovely sunny morning and all is right in the world……
06:00 Train arrives. It starts here, so there’s plenty of time to find a seat without crowds of people. I find a seat that is near somewhere I can put my suitcase so it’s close. It’s a ‘Hull Trains’ service, which are always nice as there’s space for luggage nearby and the staff are always friendly. I set an alarm to remind me to collect my suitcase when it’s time to get off.
Today, I’ve also brought my stick, so I have to put that on the outside so I remember that as well. It’s a clever design as it’s got a flexifoot so gives as you put pressure on it – perfect for someone with a wobble…..
06:30 – I remind myself why I’m going to London by looking through paperwork. By the time I get to London, I’ll have forgotten the content but will have made notes as reminders. Nearing London I hear music and begin to jig away to the tune…..only to realise that it’s my alarm going off reminding me to take my suitcase and stick🙄
09:15 I arrive in London with 2 hours to spare so plenty of time to take my time. For once I’ve had an uneventful journey – perfect start. I get a cuppa and just sit and get my brain in order. I look again at the tube directions and walking map for my hotel;
09:45 I set off for the chaos that is the tube…….I take my time and check each sign as a double check and have my instructions in my hand. I let the first tube go without me as I’m confused by the destination. I check again and this time catch the next one that arrives. I teach Tower Hill and stand a while outside to get my bearings. I follow my walking app to my hotel. Leave my luggage and sit by the river and watch the world go by quietly or as quietly as is possible in London🙄I continue to type my blog as the day progresses…..
10:45. I arrive at Devon House
12:30 I eat for the first time today but only because it’s been put in front of me. I’m not hungry but it’s there so I eat. I choose what looks familiar …I often only eat in the evening as that’s when I can relax.
15:00 Brain is starting to fade. I hear words but no complete sentences. Why am I here again?
16:00 Reminder goes off to remind me I’m staying at a hotel tonight – I’ve put the name on the alarm as well….Meeting finishes just in time before brain disengages………
18:00 Reminder goes off to tell me to go find food…….at home I would have got something out of the freezer and it would be out on the side in view when I went to make a cuppa😊
19:00 Alarm goes off to take tablets
20:00 I look out of the hotel window and watch the world go by. The silence is good; it’s peaceful and calm after the hustle and bustle of the day.
21:00 I read
22:00 I snuggle down for what I know will be a stop start of sleep/wake. I never feel restless or agitated. I feel relaxed. My body simply has forgotten how to sleep deeply and for any length of time. I miss not having a good nights sleep. I don’t feel tired when I get up through lack of sleep and I never open my eyes when I wake up. It’s as though my eyelids are asleep but my eyeballs are wide awake.
I often can’t sleep immediately due to cramp in my feet, legs or hands – I have to pace around my room until it subsides…
02:30 I hear noises, but I never know if they’re real or my mind playing tricks. My way of coping with them is to say to myself that if I hear them again in half an hour, I’ll do something about it, if not, it’s the dementia playing mind games………
06:00😳Time to give in and get up….
Ready for another day…….wonder what sort of day it will be ………..