Four Is The Lockdown Number

This piece was written in April 2020, BY GEorge reid whose father has dementia. It gives a reflection on life a year ago, with a short update in March 2021.

Four is the lockdown number. Why four? Breakfast, lunch, dinner and supper? Well not exactly. Four is the number of times the carers come in the house to empty my Dad’s catheter bag and, if I wasn’t here, make him something to eat and give him his medicine.

I worry for them and for us. It took weeks for the Government to mention carers in homes and even longer to speak about home carers, despite there being adverts on the TV all the time for this service. Why is that? Could it be because the Government have no need for home carers? Are their parents tucked away in their gated retirement homes attended to by a crew of doctors and nurses?

When my Dad’s carers started, they did not have masks, although they have always worn gloves.  I gave them a mask each. They work four days on and switch to having four days off. They are both lovely and friendly with Dad and do a great job. I did think about cancelling their visits and doing the job myself, which is mainly emptying the catheter bag, but starting up again after lockdown would probably not be easy as we would go to the bottom of the list and have to wait a while I would expect. 

They come at 8am, 12 noon, 5pm and 7.30pm. Therefore, my day revolves around these four events. Why? Because, in theory, this is when the virus can enter the house if it’s not squatting here already hiding in plain sight. Come out come out wherever you are, you little BLEEP! Squatting on the toilet flush handle like Demonic Cummings at a Sage  meeting………sorry, I got a stream of consciousness there, I do that sometimes.

I have two buckets of soapy water and two pairs of gloves that I use to wipe down the surfaces and use for nothing else.  The Doc on YouTube, Dr John Campbell, my go to guy for factual info about the virus, says if people can be asymptomatic, then anybody could have it.  The Doc said that there is a shelter in NYC where 86 % of the population had the virus but were asymptomatic and could be pre symptomatic. I could have it and Dad could have it. And, as the advert on the back of the Guardian says, Act Like You Have It. So I do.  I “see” it everywhere.

Coronavirus | Parkstone Bay Marina

To help keep things clean, I have gutted the house. I have removed all ornaments and doilies from every surface and anything we don’t need so I can wipe the surfaces and keep the place clean. Mum won’t recognize the place when she comes home.

In the early days, this was a struggle, with wipes and all sorts of cleaning solutions. Now I use antibacterial washing up liquid and a cloth, thanks to Channel 4’s “How Clean is your House” – THE most important TV program about the virus that I have watched, as they said this is the best way to keep the virus at bay. They demonstrated this by dipping a finger with washing up liquid in to a bowl of water with pepper in it to simulate the virus. An uncoated finger comes out covered in pepper and a coated one only catches a handful of grains. This was all before the leader of the free world suggested we all drink bleach.

But I digress. After each carer’s visit, I use the soapy water to wipe down any surface they may have touched or even breathed on (an impossible task really as the virus can stay in the air for hours) so we always have the windows open. This house is normally so hot you could grow tomatoes.  There’s one bucket for the bathroom; taps, door handles, door, toilet flush, light switch and toilet lid, outside door, both handles and the table.  Then with a quick change over to bucket two, it’s all surfaces in the front room; landline phone, table chair back, door handles, light switches and at night in the bedroom; table, light switch unit and door handles.  The logic being if the carers are asymptomatic, anything they have touched or breathed on could harbour the virus. They do wear gloves but I just can’t take any chances with my dad, so I carry out this process like a theatre orderly with OCD cleaning down an operating theatre before open heart surgery. 

The reason my Dad needs a carer is he is 90 and has Alzheimer’s and up until my mum fell, she was his carer. Our lockdown started early with a self-imposed semi-lockdown after the fall which was the day after her 87th birthday on the 25th of January and she has been in the Royal Infirmary and now in Liberton recovering from a fractured spine ever since. The last time I saw her was the Sunday before Lockdown.

In mid-February, Dad started having problems trying to pee and complained of the pain with his water works and had to be admitted into the Western General.  After about two weeks in hospital, he came home a week before lockdown with a catheter bag strapped to his leg and this is the reason I’m living with him instead of at home with my own family.

The Number Four, again…

Four is the number of exercises I carry out in rotation.  We are five floors up in a 1950s council block, which does have its advantages as I have taken some amazing pictures of a blood orange Venus over the Edinburgh western night sky.  I only go out for shopping once a week as I don’t like to leave dad on his own, as he managed to fall in the five minute changeover between me and my sister, and she found him lying on the floor in the living room. He had somehow managed to rip most of the skin off his arm and it looked like a scene from Zombie Apocalypse with his skin dangling off in large chunks. This happened the day before lockdown. He ended up with the biggest plaster I have ever seen covering the wound.  Anyway, I digress, again, back to my exercise regime… star jumps (60) running on the spot (60) crunches (40), and press ups (25). I do all these four times each day (of course!), bouncing about on the balcony. I play something at 3pm every day from my Spotify or Mixcloud sites or Gilles Peterson’s Worldwide internet radio station.

Four is also the time of day I stand at the back window (whoever designed these flats should have put the balcony at the back as it’s the back that gets the sun). It’s been really hot this week so I make us a cup of tea and dad goes to the kitchen window to get his Vitamin D and his Rich Tea biscuits, and I go to the back bedroom, the room that used to be mine when I lived here and I get my immune system boost as recommended by the Doc.

Shallow Focus Photography of Yellow Sunflower Field Under Sunny Sky

The other important four is 4G (no internet here, it’s like 1985, no digital anything apart from the microwave). No, I don’t have a tinfoil hat in the wardrobe, no conspiracy theories here, my friend. 4G is what I have on my 4 year old Huawei P2 . It needs to be on a permanent charge or it dies. I have already maxed out my data several times. I have access to 2G Wi-Fi via an air B& B on the roof who allowed me to use theirs which lasts for about, yes you’ve guessed it, four minutes before freezing completely, on a good day. Most of the time it doesn’t work at all.

Oh, almost forgot, the two TV’s have inside ariels and the screen freezes several times a day, often for about, yep, guessed it again four minutes. Now this can be handy at times, time to put the kettle on, got for a pee or my favourite pastime, washing my hands.

The lack of proper PPE has been described by other carers in homes as being like Russian Roulette, a pastime that took one of my favourite singers Johnny Ace, and I have no desire to join him in soul heaven just yet. These strange days do engender some strange thoughts.  Is each carers visit a single event? Or is each visit increasing the probability of us catching the virus?

Dad watches a lot of war programs on Yesterday or as I call it Alzheimer’s TV as the programs are shown on a loop (he doesn’t notice). Some WW2 pilots came to the conclusion that each time they landed safely back at base their chances of making it through to the end of the war increased, almost like they have diced with death and become like the Arsenal team of 2003/2004. Are we risking life and limb every day with the full chamber getting closer to our heads? Or maybe it’s all deterministic like DEVS? What is DEVS? Watch it to find out, no spoilers here my friend.

After writing this, there was another four to add. Dad woke me up at 3.05am “George this bag isnae working I canny pee, can you fix it?” It was obvious that he was in extreme pain and could not pass any urine and when I looked at the tube I could see blood in it. After much faffing about with the catheter and heated discussions, I decided to call the ambulance. They arrived quickly and took him away to the Royal Infirmary at 3.58. He should have been going back to the Western General but they didn’t want to take him. I grabbed a Sainsbury’s shopping bag and threw in a change of clothes and essentials like his false teeth. It crossed my mind that I may never see him again and neither would my mum or my sister.  I couldn’t hug him, so I just said ”see you later” as he was being wheeled into the lift, which sounded so lame.  The last thing he said to me was “get inside or you’ll catch your death”.

It took a while, but eventually I dropped off to sleep and was awakened by the sound of the doorbell at 6am. Dad was with the paramedics and he shuffled in the door in his slippers and went straight to bed. When the carer came at 8.30 he told me Dad had some blood in his urine. Today is all about keeping an eye on this situation as he may have to go back into hospital.

I phoned the Royal and got to speak to a doctor who told me it’s a normal thing to happen and may happen again as the catheter gets blocked with small amounts of blood as it’s a thin tube. She said if the urine was the same colour as Rose wine it is ok, if it looks like Merlot, bring him in. Keeping with the alcohol analogy it’s like weak lager, so as Saul would say “It’s all good man”.

Oh, sorry, gotta go, that’s the entry phone buzzer so I have to let the carer in.

Postcript:

March 2021. George’s mother is now home and his father’s dementia does not seem to have worsened, although he is now 91 and has ongoing health problems. They are now receiving more care.

He says “I try to get  both of them do chair yoga and move about more in the flat but it’s a Catch 22 as it can cause pain. It sounds harsh but it’s “use it or lose it”, as their muscles waste away with lack of activity. My dad enjoys singing along to his Playlist for Life, although I’m not sure mum or whoever is in earshot at the hospital  would enjoy it so much…. Hopefully when the better weather comes I can get them out for a spin in a wheelchair so they can feel the sun on their face.”

With thanks to George Reid for this guest blog.

The Power of Spaces

In the last twelve months, how we view and use spaces has changed dramatically. Our homes are now our work spaces, public spaces have been quiet and empty, and virtual spaces are now the new norm for meeting with colleagues, friends and family. Until we found ourselves without physical spaces for meeting and being together, I hadn’t paid them much attention – now I miss them dearly. I had also taken for granted the impact the spaces we occupy have on the work we do but it is clear they play an important role in our engagement with young people.

Last March we witnessed the closing of community centres, classrooms and other dedicated youth spaces across the country. Without much notice at all, those who worked closely with young people were thrust into the virtual world and had to adapt quickly to running online youth group activities, offering support online and from a distance, and learning how to build and maintain relationships with young people without ever spending time together face-to-face. Suddenly the impact that physical spaces have on participation and engagement became very clear.

On Care Day, young people and those who work alongside them reflected on the importance of physical spaces in a workshop hosted by the Trust. The themes of ownership, belonging and safety were consistently reflected in the discussion.

Feeling ownership of a dedicated physical space allows young people to be more authentic and genuinely themselves. This leads to a feeling of belonging and safety. The ability to decorate the space opens up options to display their work and express themselves creatively. That ownership then feeds into possibilities of addressing any power imbalance felt between young people and the services they engage with in that space – suddenly the young person is putting the kettle on and showing you where the toilet is. They feel comfortable and safe. They feel welcome. They feel more in control.

We also heard many stories about the importance of food and sharing meals in dedicated spaces. Those can be the gold-dust moments – preparing food or passing the salt and pepper across the table – that allow relationships to bud and blossom, friendships to form and memories to be made. And as a result, we see more positive engagement and participation from young people and they feel their presence and contributions are valued.

In stark contrast are the reflections we heard about spaces where young people did not feel welcome. In those spaces young people didn’t open up as much or respond to the opportunities around them. They perhaps disengaged or their attendance wasn’t consistent, they didn’t feel they could make full use of the space because it wasn’t theirs or they were reluctant to be truly themselves because they didn’t feel completely safe in the space they were in. The importance of feeling welcome was powerfully illustrated by one group who told us about a caretaker of a shared public space who wasn’t particularly friendly or warm towards the young people and that was enough to spark a decrease in participation.

Although we know how important physical spaces are and there is a hunger from young people and workers alike to reclaim those spaces, we must not overlook the positives drawn from our sudden venture into the virtual world. The breadth of online opportunity that has sprung up over the last twelve months has allowed for further reach and improved accessibility for some young people. It has ensured that young people’s voices continue to be heard and it has also played a vital part in tackling the isolation and loneliness felt by many.

Given the pace at which we have all had to learn about how to occupy virtual spaces and the wealth of knowledge and experience we have developed, it would be a real shame not to give thought to how we provide safe and welcoming spaces online as well as offline to our young people.

My wish for us is that, as we move towards the easing of restrictions and the re-opening of our beloved physical spaces, let’s be mindful of what we have achieved in virtual spaces and take that learning with us. How can we move back to face to face work and invite the virtual world to remain a part of our participation and engagement work with young people?

The Trust is keen to share learning and practice, so please get in touch if you’d like to explore this with us.  

And as for those physical spaces – well, I don’t think we’ll ever take them for granted again. I look forward to witnessing young people and the adults alongside them breathing life back into our cherished spaces very soon. We all know that magic happens within those four walls.  

Laura Graham, Senior Evidence & Influencing Officer, Life Changes Trust