©Julia Welstead

Dear Tuesday 12th May 2020,

Just for the record, here in Scotland you are a beautiful mid-Spring sun-windy day, with a cold northerly breeze keeping this menopausal woman very happy!

I’m a 57 year old Scottish woman who lives on a small island in the Hebrides. I currently work as a nurse-carer for a private patient who suffers the condition of advanced Parkinson’s Disease and associated dementia, and requires total care. At the time of Covid-19 lockdown my patient and her husband were at their winter home in Fife, so we are now stuck there rather than enjoying the wonderful Hebridean Spring (although Fife is lovely too, so I shouldn’t complain!).

I work on a fortnightly rota. During my two weeks on shift I live in, and am on duty from 8am to 8pm and ‘on call’ if needed during the night. Today finds me almost midway through a fortnight on shift, and writing this is going to be a challenge as my time is not my own. 

Had the 12th May fallen in my two weeks off, my diary would have been filled with the wonders of a Hebridean island in Spring, the skies filled with the mating calls of lapwings, skylarks, plovers, terns and gulls, the land awakening and blossoming with the early beginnings of the fabulous machair (coastal sandy land) grasses and flowers, the crofters buzzing about, busy with lambings and calvings, fence and track mending, roof fixing and whitewashing of houses and barns. I’d have been swimming in the sea with friends, having cuppas in sheltered sun-traps with neighbours, tending my wee garden and thinking about whitewashing my house (must do it soon!).

Instead you find me here in Fife, which, though also lovely, is not my home. Here I know no one and am only known as ‘the carer’. I don’t mind the anonymity, it’s quite freeing in a way, but only if I’m able to get home and back into my own skin in my time off. Otherwise I lose sight of myself, and get a bit dragged down by the reality of life with an advanced chronic, debilitating disease, even though it’s not me who has it.

So, to the diary!

7.15am = alarm and wake, stretch, roll, curl up under the covers for a moment and then slither reluctantly onto my yoga mat. I’m in a small back bedroom where I can still hear the goings on in the house, so I know that the night and this morning was quiet. Sometimes my patient doesn’t sleep and the nights are active, noisy and fraught.

7.45am = me and my dog (yes she’s allowed to stay too) hoof through to the kitchen, trying to avoid being ‘on duty’ yet as we still have 15 minutes of ‘our time’ to feed and take a quick walk around the garden. That blast of fresh air sets me up for the day.

8am = on duty! My patient’s husband retires to his office, where he catches up on lost sleep on a pull-out bed, usualy emerging at about 11am. I take over care at whatever point it’s at. This morning nothing had happened, so I cook up egg on toast and then ham on toast for my patient, give her her first dose of an hourly medication, empty her commode, collect up any washing and generally tidy up a bit. She likes Radio 4 extra and/or breakfast telly (she has a TV at the end of her bed).

I eat brekky buns – uber healthy banana and nut muffins that my nephew taught me to make. No sugar, no dairy, all yummy goodness! I bake a batch of 12 every six days, and have two each morning, which keeps me going until noon. I also drink about four cups of tea – black, no sugar. I keep re-using the same bag so it gets weaker with each cup.

9am = all quiet on the western front, so I’m still writing this.On some days my client is up by now, or in need of constant attention, depending on her level of agitation. This morning she is asleep: good for her and for me! Radio 4 extra blares on (she needs it loud) and I know already that my head will be buzzing soon. Also – when you listen to it all day every day you realise there are a lot of repeats!

9.20am = my patient is awake and will now need my full attention….

10.40am = patient up, showered, dressed and having coffee and cake. Bedlinen in washing machine. Coffee for me! My back aches – moving and handling my patient has become noticeably harder recently (she has ‘stiff’ Parkinson’s which means she doesn’t shake, she stiffens to an immoveable statue) – and I do a few spinal reversals in an attempt to re-shape and relieve, with partial success.

I’ve never had a great back. A teenage incident with a horse left me with a spinal curvature, and a fall from another horse three years ago left me with a broken vertebra. (I hasten to add that I had a fabulous time riding and working with horses in the interrvening 40 years!). I’m lucky to have use of my legs at all – the break and collapse of vertebra L2 was a whisker away from my spinal column – so I look upon that accident with joy rather than dismay. But it left me unable to sit at a desk for long (at the time I was a sub-editor on a magazine) and I find physically active work suits me better now, though it takes its toll too.

After initial hospital immobility, and a few months tottering about in a body brace, my recovery was mostly through daily swimming. Lockdown has put a stop to that for now and I miss it. Apart from that, lockdown hasn’t greatly changed my ‘on duty’ life, as we were pretty isolated anyway. I’d say the most noticeable change, as time slips by, is that we are all getting hairier! My last hair cut was scheduled for the day after lockdown began, so I now have a hair that hasn’t been cropped since last October, not long enough to tie back, but grown to a annoyingly foppish mop, which I contain under a flowery headband while I work (Mrs Mop c.1950!), and let loose while I walk up the hill on my break.

11.26am = first washing out on the line, second load splooshing and swirling in the machine. It’s a beautifully sun-windy day, perfect for line drying all these sheets. Yesterday Scotland had snow – mid-May!! Mind you, my parents married on the 14th May 1955 and it snowed then, so it’s nothing new, but we forget.

Hoovering, sorting laundry, cooking and all the other household chores fits in and around checking on my patient. Due to her dementia she needs constant watching as she does some fairly erratic and bizarre things that can be dangerous. The best way I can describe the work involved (aside from the chores) is that it’slike lifeguarding (another job I’ve done) in that there’s a constant need to scan, to watch, to identify risks and decide how dangerous they are. Over a whole day it’s very draining. 

The other difficulty about lockdown that I should mention is that my patient cannot understand it, and her paranoid mind thinks we are keeping her prisoner and not allowing trips out or visitors. Repeated explanations have only a very temporary effect (as little as 5 minutes usually)…

12 noon = sorry, interrupted! …and the whole thing is causing extra anxiety for her. Add into the mix the VE Day celebrations, which she watched endlessly on telly, and we now have a situation where she thinks there’s a war on and we could be bombed at any moment! The best solution is usually lightheartedness – we have a good rapport when it comes to humour – but sometimes she takes offence, so I have to be very attuned to her state of mind and act/speak accordingly.

My break today is now (it varies) so me and my mature mini-dachshund set off up the hill then take a left along an overgrown track that backs a terrace of grand old Victorian houses. My dog likes this track because of all the doggy smells. I like it because to the right is a series of well-tended allotments. Last autumn I was drooling longingly at the sight of all those leafy greens, but now the beds are cleared and re-planted, cloches are cleaned, mended and re-deployed, net cages are ready to protect fruit bushes from birds.

Above us, a raptor is being mobbed by a carrion crow. It’s a neat buzzard (their size varies, and this is a small one). We turn right up a wee mud lane – dusty-dry at the moment due to our very dry April/May – round a small woodland and emerge onto the hill. Beyond a white-flowering hawthorn hedge there’s a bright yellow field of rapeseed oil, and here flit flashes of yellowhammers, flirting, nest-building, singing their song, ‘a little bit of bread and no cheese’ over and over.

We pass maybe half a dozen other walkers and their dogs during our hour out, all keeping our respectful 2m distance (or more like 10m in most cases) but also saying a few friendly words to each other. I’ve noticed a significant upturn in friendliness and mannerliness since lockdown. Smiles, eye contact, a desire to connect – it’s universal.

As we descend the hill a skylark is ascending: clear pure song in a clear blue sky. Lifts my heart.

3.10pm = so it goes, time slips past me like water past a boat. Ocasionally I see metaphorical dolphins in my peripheral vision, but mostly I’m dotting from one little task to another whilst keeping watch on my patient, and there’s no time to scan the horizon.

Radio 4 extra is repeating something that we listened to this morning! Moll Flanders again!! Or is it the next episode? I wasn’t listening sufficiently this morning to know.

3.30pm = I brought all the washing back in from the garden twenty minutes ago, as there were ominous clouds around. It’s back to sunshine now, hey ho. It can damn well stay in. 

Now I have folded linen on every radiator, and have to slightly woman-mark them such that my patient doesn’t take them all off again. We enact a choreographed dance, mostly gentle and subtle, sometimes momentarily frenetic, of working around each other. In my years as a nurse I often noticed that female patients with dementia developed repeated movements of handling fabric: fingering edges of blankets, folding clothes, sorting and moving bedlinen. I never did see a male patient do this, and assume that a lifetime of housework prompted these ritualistic movements. It makes me wonder if there will be evidence of men having done housework in subsequent generations of dementia patients!

4pm = I walk a fine line with my patient – give her too much attention and she gets tetchy, give her too much quiet time and she frets. Right now we are sitting at the green oiled-cloth table having tea and biscuits, but nothing is quite right for her and I already know she won’t drink the tea. Keeping her hydrated is a struggle.

6pm = I have cooked up a lentil dahl and rice, and heated a selection of Indian snacks – finger food works best for my patient – and although sandwiches are her mainstay, she has been an excellent cook and is still impressively discerning in the food department (my offerings fall short of her desires most of the time).

5pm = Radio 4’s news and comment has to be switched off, it’s just adding to her distress and conviction that we are being attacked.

At this end of my shift I’m wilting (the house is kept several degrees warmer than I’m comfortable with), weary and sore. The temptation is to go straight to bed at 8pm, but I’ve learned that this lowers my mood: it’s better to go for a brisk walk (in the absence of swimming facilities) and get my head away from work before sleep time.

7.50pm = so close to finishing,and yet so far. I’m scooting around the kitchen washing up, clearing, wiping, and hoping my patient’s husband will reappear soon to take over for the night shift.

8pm = he’s here and I make a dash for my room. I like him and we have some really interesting chats, but right now I need to lie down and rest my back.

I have a phone message from a friend of my mother’s, who I only got to know during Mum’s final illness and death three years ago. I give her a ring back: is she ok? And her family? Is she isolating alone or with them? All is well.

8.30pm = dog and I take a hike round the block before bed. No one is out. It’s freezing! We shiver and jog all the way home, jiggedy-jig.

9pm = I’m in bed, stretching with feline luxuriance, feeling each and every weary muscle relax with a sigh of relief. I can hear the TV on through in my patient’s bedroom – I never feel entirely free whilst here, and keep meaning to buy earplugs! And here’s a final image for you: I find it hard to visit the loo at night without disturbing the household, so I take an old washing up bowl into my room and pee into that! It keeps me agile – Angela Rippon would be impressed by my squating abilities!

So, that was my day, with a lot of extraneous information (feel free to skip it). Tomorrow at noon I’m officially half way through my two week shift, and can begin to count down toward GOING HOME TIME (sorry to shout that) and the ferry across the seas to sand, sun, sea spray, swimming, and freedom to be myself, pottering round my wee house and garden, drinking coffee (or wine – I’m tee-total while at work) by the fire.

Thank you, Tuesday 12th May 2020, you were good and kind and bonnie and blyth for me.

“I donate my 12th May diary to the Mass Observation Archive. I consent to it being made publicly available as part of the Archive and assign my copyright in the diary to the Mass Observation Archive Trustees so that it can be reproduced in full or in part on websites, in publications and in broadcasts as approved by the Mass Observation Trustees. I agree to the Mass Observation Archive assuming the role of Data Controller and the Archive will be responsible for the collection and processing of personal data and ensuring that such data complies with the DPA.”