It's occurred to me that I have a blog, but I seldom write about the mundane things that happen daily during my journey into dementia.
Time to put that straight. So I invite you to walk alongside me for a day and experience my world and Alzheimer's disease's effect on my day-to-day functioning.
4 a.m.
I wake up sweating. The echoes of an intense dream swiftly fading but still leaving vivid impressions in my mind. It takes me a few minutes to orientate myself and work out that the waking world I will be inhabiting for the rest of the day does not contain the people, places and events that populate my dream world.
I remember that I am alone.
My wife Pam has spent the night at her workplace, part of her duties as a carer for adults with special needs. My mind is awash with a torrent of ideas and thoughts. It's the same every morning.
My brain processes random events and things I have read during the day and presents them to me in the morning as a series of ideas and to-dos.
So I sit up in bed, switch on my smartphone, open Twitter and write a Tweet to North Northamptonshire Council to ask them why they do not have a disabilities forum. It's something that has been on my mind for some time.
I emailed some counsellors way back last May but have yet to receive a reply. The rest of the County has disability forums. Still, there appears to be no provision in the part of Northamptonshire where I live.
So, in the Spirit of "nothing about us without us", I'm determined to do something to address the situation.
Job done. I'll wait to see if I get a response.
My left arm is aching badly. I had a fall a year ago and shattered my shoulder, which required major surgery to replace the entire ball and socket mechanism with a shiny new titanium one. It seems that the colder winter weather is affecting it.
I reach over and swallow a couple of the strong paracetamol tablets I keep on my bedside table.
Next, with the memories of my lucid dreams still washing around in the back of my mind, I perform my morning ritual.
I open, in turn, my sudoku and solitaire apps and complete the daily challenges. They are complicated this morning, but this mental exercise keeps me sharp. If I fail to meet my daily session, I return to it repeatedly until I finally crack it. I am proud of my unblemished successful record over the last four years.
I use these puzzles to help gauge my success in fighting the brain fog that increasingly envelops me.
5:30 a.m.
Pam texts me. " good morning". I reply, "good morning, my love XXX". It cheers me up.
I open my calendar app to see when Pam will be home...
9 p.m.
Oh! That means I need to remember that I need to make my own evening meal.
Realistically, I know in my heart that that won't happen. I simply won't remember.
Many times during the day ahead, I will ask myself the same questions. "I wonder what time Pam's due home?". "What do I need to prepare for tea?".
I sometimes catch myself asking Pam the same question multiple times. " what time do you go to work, Pam?". " when will you be home, Pam?".
She must get tired of repeatedly answering the same question. Still, she never reminds me that I had only asked the question a few minutes before.
I love her for that.
6:30 a.m.
I get up and shower. My mind is still racing. What do I need to do today? What are my priorities? I have so many tangled strands of thought, and they all seem important. I don't want to let anyone down. I want to pay attention to every task. I am aware, however, that I am not very good at prioritising and managing appointments and responsibilities anymore - I don't have that built-in ability. So I rely on the whiteboards dotted around the house and my online task lists and calendar.
Luckily for me, most of the people I interact with tomorrow are aware of the restrictions of my dementia and send me multiple reminders of any appointments that may be upcoming.
Bless their hearts.
7 a.m.
Showered and dressed.
Today is Thursday, and according to my calendar, it's the day that I take my Ozempic injection.
I prepare the autoject pen and inject the metered amount into my stomach.
This once-weekly dose suppresses my appetite. As a result, I eat little nowadays, and my weight loss has resulted in a stabilisation of my blood sugar levels, which means that I no longer require a twice-daily insulin injection - which I often forgot.
As a result, my health is much better now.
I wonder when Pam will be home?
I check my calendar...
9 p.m.
7:30 a.m.
Listening to the radio (BBC Radio 4) engrossed in the news and current affairs.
I have my smartphone in my hand - Twitter app open, and I monitor the online discussion around the issues of the day, and Tweet responses to any comments that I feel need addressing.
I use a pseudonym as I like to keep my political opinions separate from my general opinions about the world of dementia.
9. a.m.
Where has the time gone? I have been so absorbed in the radio that I have neglected to phone my mum and wish her a good morning.
I have had nothing to eat or drink and have done nothing to prepare for my day's business online. This is typical of me nowadays.
I cannot focus. I am a gadfly that is easily distracted and flits from thing to thing in an aimless and repetitive circle until I exercise an effort of will to get my act together.
So I mix myself a half litre of tomato juice with a dash of Worcestershire sauce and a pinch of celery salt and drink it down as a breakfast.
It dawns on me that the alarm reminding me to take my morning medication went off at 7 a.m. It buzzed loudly for half an hour, then settled down to a flashing red light. I hadn't noticed.
I take my morning medication.
09:30
I am sitting at my desk in front of my computer.
This is where I spend the majority of my time.
Attending to chores and household work never seemed to enter my head as a priority. I dimly recall that I ought to be vacuuming, dusting, sweeping, changing the bed, trimming the hedge etc.
Still, my brain never registers any urgency to these mundane tasks (although I have a vague feeling of guilt). Instead, I am driven by the obligations of my work around dementia.
I wonder when Pam will be home?
I check my calendar...
9 p.m.
I check my calendar again and organise myself for my online meetings - I've got three today. Then I do some prep and immerse myself in the buzz of dementia-related topics, occasionally pausing to check my calendar to remind me of when Pam will be home.
4 p.m.
Where has the day gone? My legs and back ache, and I feel exhausted. I realise that I haven't eaten or exercised, and I feel guilty again (there seems to be a lot of guilt associated with my failing memory).
I'm not particularly eager to exercise alone as my balance has been affected by my dementia, and I am frightened that I will fall; This prevents me from walking to the shop or even doing much around the garden when unaccompanied.
I start to panic.
Where is Pam? She must be at work.
And I still need to prepare a meal for her!
I check my calendar and see that she finishes her shift at 9 p.m.
I remember that I ought to know this information already, but I am resigned to the fact that I can no longer retain this short-term stuff.
I make a mental note that I ought to invent a way to keep this info in front of me as a reminder.
Still, I know deep down that I probably won't unless I wake up one morning with a newly-hatched idea racing around in my head.
6 p.m.
I am still sitting at my computer desk.
I've been dithering around doing this, that, and the other for hours, but the need to use the toilet has prompted me to get up.
Then, I remember that I ought to eat something. Still, I can't be bothered to cook, so I find a piece of cheese, drink another half-litre of my tomato juice mix and return to my computer.
First, I make some paintings out of old photos of the local area using computer-aided software with lots of user intervention.
Next, I do a little research into the history and practice of elder clowning for a course on the Therapeutic benefits of clowning that I am co-producing and presenting for my local NHS Recovery College.
Once again, I am in a sort of fugue state. I am busy but a little aimless. I do a bit of this and a bit of that. I surf the internet on impulse. I think of clowning.
I think about red noses.
I order a bag of thirty from Amazon (I do a lot of impulse buying nowadays and often forget what I have ordered - it gives me a guilt complex when I think about it (which isn't often)).
9 p.m.
My phone alert goes off to let me know that Pam has begun her drive home (we use an App called Life 360 to track each other - it's comforting).
I switch off the computer and go into the lounge. It's dark, so I switch on a table lamp and try to make the place look tidy and inviting.
It dawns on me that the alarm reminding me to take my evening medication went off at 8 p.m. It buzzed loudly for half an hour, then settled down to a flashing red light. I hadn't noticed.
I'm tired.
Pam arrives home.
She's tired.
I ask her how her day has been and make her a mug of coffee.
She tells me a story about some things that have happened to her, but I'm too tired to listen properly, and I can't really take it all in.
I ask her, "are you working tomorrow," she says, "no Pete".
So we sit together for a half hour, and then I retire to bed to read a little on my Kindle.
When Pam comes to bed, I ask her, "Are you working tomorrow?" "no", she replies.
Eventually, I drift into a fitful sleep, haunted again by fantastic, detailed dreams.
Epilogue
Mundane, isn't it?
But it's who I am now as I slowly lose focus on the ordinary and retreat to the comfort of familiar things that I am still quite good at. The theme of my life now seems to be repetition. I ask a question of myself and others. I obtain an answer - but it doesn't stick, and a short while after, I'll ask the same question again. It must be intensely irritating, but I simply can't help it. In my world, every time I ask a question is the first time. Thank you for spending a day by my side.