Category Archives: Real Life

Happy Birthday Bob – Living with Alzheimers by Chris Suich

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Sunday and it’s Bob’s birthday. I have been preparing for a while. What can I do to make it special in his room and something he might recognise as a birthday? He doesn’t recognise me let alone anything else!

The caterpillar cake is a must, we often had one for our boys’ birthdays and for parties of any kind even when they were grown up. Maybe he might have a memory of those days. A ‘Happy Birthday’ balloon . He can read the words even if he doesn’t understand the meaning. I could tie it to his bed and it will look jolly. Obviously chocolate buttons – he associates them with my visits. I break them in half and they melt on his tongue. Lots of cards. Several have already come in the post. I will open them for him and read them to him, coaxing memories of each and every sender. A bottle of Prosecco. He loved it last birthday although I had to watch through a window last time. And,  the best news of all, our eldest son Joe can also come with me for the first time, at the same time. A whole two hours all together. What a bonus!

The morning started with our two friends delivering some gifts. A beautiful soft blanket and a 1970s football sticker book with all references of Arsenal clearly ear-marked with post it notes for me to read and show to him. How unbelievably thoughtful. How kind. Another present arrived on the doorstep a bottle of port. Two kind friends knew it was Bob’s favourite tipple and that I give him some in his beaker sometimes. Then another wonderfully thoughtful gift, a box of hot chocolate sachets. Bob’s favourite hot drink. Do they know how much their kindness buoys me up. I hope so.

Even Joe’s school friend and her little girl write and send a lovely card. Always supporting us and so kind and positive.

I am filled with a strange mixture of joyful anticipation tinged with anxiousness. I so want it to go well. I’m desperate to have a shared moment where he comes back to me. Even for a moment.

I really have thought of everything candles, knife for cake, napkins, cupcakes for the carers, bottle of fizz, presents, cards, chocs and the music playlist.

We have our lateral flow tests and wait 30 minutes. It’ll be ok, I have so many tests every week and a PCR and I’m very careful in my daily life.

Exactly 30 minutes after the negative test we are allowed in. Straight through the corridor to his room. Bob is sat in his chair next to his bed. Quiet, deep in his thoughts.

‘Hello, darling, Happy Birthday.’

‘ Happy Birthday, Dad! ‘

Vacant. This is going to be a bit of a struggle I thought, but I’ll get there by the end of the two hours. He’ll smile, or stare intently at my face or just hold my hands.

Joe will talk to him about Arsenal and he’ll repeat the names of players. I give him the blanket and tuck him in his chair with it. He clutches tightly at it. It’s lovely and soft. That’s a hit, I think.

‘ Hey Bob, look what I’ve got you, a birthday cake’ .
I light the candles and we sing happy birthday. He cannot focus on anything, perhaps he’s overwhelmed. I pick the cake up and put it in his eyeline and we sing again. This time he sees but can’t blow out his candles. We do it for him and clap and cheer.
‘ It’s your birthday Bob, you’re 69 today and it’s a good day because we’ve brought you cake and presents’
‘ Is it? ‘ he replies.
I remind him that I’m Chris and that I’m his wife. I tell him that Joe has come today too and he’s his son. ‘ Are you ?’ he asks.

I get his chocolate buttons and put a few in his mouth. He likes them. His mouth opens again signalling he wants more. I cut the cake. We have a piece each. I cut Bob’s bit into small squares. I tell him it’s birthday cake and it’s delicious. He takes it all on his tongue bit by bit and I put the drink in his beaker and tilt it so he can sip it.

‘ Bubbles’ he exclaims.

I’m so happy he’s remembered the bubbles. He enjoys a full beaker of Prosecco.

Then the cards. He cannot hold them or tear them open so I do that and read each one. The first is from Eddie, our youngest son.

‘ Look Bob, this is a nice card, it has a bear on it and it says Big Bear hugs. It’s from Eddie. He’s your boy and he’s in Australia. He loves you very much and sends you a big kiss’

Suddenly Bob shouted out,  ‘ Come now, come now’ . How amazing, he’s making sense and he wants to see Eddie. I said that we would ring him and he’d see him and talk to him. COVID-19 has made it impossible for our son to get home to see his Dad so this is all we can do.

The next card is from Bob’s brother and he’s sent him some photocopies of some pictures when he was young. How thoughtful. I show Bob and provide the narrative. I place all the cards on his windowsill. The bed is facing the windowsill so Bob will be able to see them from his bed or chair.

‘ Hip, hip, hooray,’ Bob says randomly. I wonder where that’s from and then realise he’s reading one of the cards. On the front it says ‘ Hip, Hip, Hurray, it’s your birthday’.

So I play the music. All picked as ‘our tracks’ or something that Bob loved. The Beach boys, David Bowie, ELO, and lots of Motown. I joke about me always bringing him good music and we have our own private disco. I dance about the room and we laugh and sing. Sometimes Bob calls out randomly. Or he makes sounds like he’s trying to sing. He tells me to ‘ Be careful’ . I tell him I will be. He starts to count, out of sequence, random numbers.

Music is the key that unlocks him. He tries to sit up and opens his mouth for a kiss. I kiss him and put my arms around him. I tell him I love him and he looks at me smiling and says, ‘She’s happy’.

I show him the pictures of us in his memory book.

Then he has us in stitches. ‘ There’s two of them’ he says pointing at the cushion that has a picture of me and Bob on. He’s saying there’s two Chris’s  – me and the one on the cushion. I tell him there’s only one of me! But we all have the giggles. Bob too because he’s joining in with us.

Joe holds his hand. It is a good visit. I think Bob has enjoyed it.

We tidy up and get ready to leave. I kiss him again lots of times and he suddenly says out of nowhere, ‘ You’re my wife. ‘

The tears flow. I can’t believe he’s said it. The carer comes back and my eyes are filled with happy tears.

‘Are you alright?’ she asks.

‘ Yes, I’m just a bit emotional. He’s just said I’m his wife and for that moment he knew me.’

Wonderful memory that will sustain me for a little while.

Happy Birthday, Bob. We had a good afternoon didn’t we?

Living with Alzheimer’s – I am an Essential Caregiver by Chris Suich

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At last, I’m Bob’s ‘essential care giver’!

It has been a tumultuous battle this year for me and many thousands more up and down the country who have been desperately fighting to see their loved ones in care homes for a year and more. Our loved one’s mental health and well-being have not being considered; the laws that are there to protect the vulnerable have been ignored. I was reading recently that there is a catastrophic hidden cost of Covid because many dementia sufferers have simply given up, refused food, and died because they do not understand why their loved ones have stopped coming to see them. Despair and loneliness the silent killer.
My husband went into care just a week before the first lockdown when there was no vaccine and limited knowledge about how to halt this pandemic’s spread. I understood why I wasn’t allowed in and resorted to waving from the road or at the window with the British spirit of ‘ stiff upper lip’ and put my own agonies aside as this terrible Covid 19 meant we all had sacrifices to make. I was kept away, not able to hold his hands –even outside in the summer when the R rate was low, even though I was willing to wear PPE and do anything else required.  Then he caught Covid inside the home but fought and got better from it. This was devastating and the site was closed – all window visits stopped and I heard nothing for two months until I begged the GP to check on him.

Today we are in a very different position; so it makes no sense why some care homes cannot follow the latest government guidance of April 2021 and allow indoor visits mitigating risk, using lateral flow tests and PPE for all care homes everywhere.

For my part, I have been well supported by the founders of John’s Campaign – Julia Jones and Nicci Gerrard, as well as Leigh and Day solicitors and Rights for Residents founders Diane Mayhew and Jenny Morrison. Their steadfast advice and ability to cut through the legislation to make it clear and understandable has been invaluable. The publicity they have commanded on media, TV and radio raising the profile of care home visiting and the articulate way Jenny spoke to the Harriet Harman  select committee recently has been both humbling and a cause for jubilation. She spoke for me and for everyone.

I did everything I could to try to persuade the manager to let me in. I explained about ‘end of life’ being 6-12 months not just imminent death. The guidance states this and also that visits should be facilitated. But to be brutally honest, it wasn’t until we sought legal advice and sent a letter that a meeting with the Regional manager was organised which resulted in making me an essential care giver. In addition, Joe, our eldest son has been made a  designated visitor when he can get freed up from his shifts in the hospital. There is a very detailed personalised risk assessment. I have PCR test and a  lateral flow with the carers and home staff weekly and another lateral flow test every time I visit. It is a small inconvenience. I can now see my Bob for two whole hours twice a week in his room. I am ecstatic.

Much has changed. He doesn’t ask to hold my hand anymore he’s forgotten how to hold hands. I still hold his though and stroke his hands and face. He doesn’t know who I am anymore but he knows I’m ‘lovely’. He rarely understands but he seems content and searches my face and loves it when I smile. I play him lots of music. The tracks from his youth. The bands he actually booked when he was President of the Entertainment Committee whilst at Sheffield University in the 70s. Our youngest son still in Australia has suggested a playlist.
I try to keep to a routine. He likes a hot chocolate and I feed it to him at 3 pm in a beaker every time I visit. I give him chocolate buttons on his tongue. I always play ‘Oblah  Dee Oblah dah’ and he has started to la la la which I’m thrilled  about. I think he’s happy when I’m there, he chitter chats in a completely non-sensical way but I go along with it all. I’m trying to get a little bit back from him and I’m succeeding. He looks better and is not so agitated. He lets me put his cardigan on without a fight and brush his teeth with a soft brush. He does still call out randomly and hallucinate but generally he’s content. I too am content. I can check he’s clean, his room is kept nice and he’s as healthy as can be expected. The carers are kind and courteous to me. I thank them. They cannot fail to see the bond between us. He’s still there deep inside and he does come back to me a little every visit.
So today I had another visit and it does us both good. I left him wrapped in the memory blanket with the pictures of our family on it.
I am very lucky to have this precious time and I pray that everyone will see their loved ones soon, before it’s too late.

One year in care during Covid 19 – Living with Alzheimer’s by Chris Suich

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I can hardly believe it is a year since Bob went into care. I have fought to have a meaningful visit for almost as long. I have three files of letters, have been interviewed on the main BBC news at 6 pm and 10 pm and done a double page spread with The Daily Express. I have joined 2 campaign groups and worked with human rights lawyers.

Still,  I have only seen him in his room for the last five weeks for 30 minutes each time because I have begged and underlined the guidance – which I have kept up with regularly –and where it mentioned  ‘ end of  life’, which states meaningful visits should be facilitated safely  (with lateral flow tests, temperature tests and PPE.) My GP has supported me, and my Admiral nurse.  My GP wrote a letter stating she thought Bob had months to live. 6-12 months is deemed end of life. This should be recognised by care-homes. It is written in the guidance during COVID-19. That was November. It took till the end of January. There are thousands and thousands more families up and down the country suffering. Yes, many residents have died in care-homes from COVID-19  but I wonder how many have died because they have been isolated from loved ones and have given up? I have seen the mental anguish. I have gone every week I was allowed on site to see Bob at the window. I have witnessed the scratching at the window, the crying for me.

The deterioration in just a year is profound. Bob cannot stand, needs a hoist, has a soft diet as he has a high risk of choking, is doubly incontinent, and speaks in odd words and phrases which are often muddled or random. He is as dependent as a baby. But he’s mine, and he’s still inside there somewhere.

So Bob is a shell of the man that walked into care. He doesn’t know me. I can hold his hand but he has forgotten how to hold mine. All those weeks he reached out to me begging to hold my hands and now he’s forgotten how to. I tell him I’m Chris, his wife and I love him and it’s a good day because I’ve come to see him. I pick up one of the memory books I’ve done for him and I talk to him about the pictures.

‘ Look, this is a lovely picture darling. That’s Eddie with his arm around you.  You were in Skegness having fish and chips’.

There is some recollection and then ‘ Edward, Edward, Edward!’

‘ Yes, and look who this is, it’s your Joey, yes, that’s Joseph’

Another flicker perhaps, a frown, dredging up the distant memory of his eldest son’s name.

And then, ‘ He’s a good chap.’

‘ Yes, he is. Dr Joe , he’s coming to see you tomorrow, darling, as soon as he’s finished at the hospital. He’s  coming to see you. How wonderful will that be?’

He looks around his bedroom as though he might be coming right now.

Then he sees my smiling face on his pictures on the memories blanket on his bed.

‘ She’s smiling’, he says.

‘ Yes darling, that’s me and I’m smiling because I’m here with you’

‘You’re very pretty’

‘ And you’re my handsome Bob’

That has tickled him and he laughs and laughs.

It is magical to have this response. Sometimes it is nothing. Staring in front of him if he’s sat in a chair, or laying in bed with the radio blaring. Lost in his thoughts, days passing, monotony, lifeless and without my stimulation. He jerks and reaches for things in fresh air, hallucinating. Today is a calm day.

It’s amazing what I can pack in the 30 minutes. I take him chocolate buttons and he opens his mouth like a little bird and I pop them in, one at a time. He licks his lips and I know he’s enjoyed them. I read to him. The Owl and the Pussycat last time. I play him our tunes. The Beatles ‘Ooh Blah  Dee Ooh Blah  Da’ and he responds. He wails to the chorus, trying to sing.  He recognises the chorus and I’m pleased I thought of that one. I dance around in front of him singing and trying to get a further response. I play ‘ A Groovy Kind of Love’ by Phil Collins. Our song. He knows the name. ‘ A long time ago’ he says.

It is – a lifetime away.

Out of the blue he says, ‘ I love you’ and I’m overcome, the tears spill. Happy tears tinged with sadness.

Then the knock at the door. ‘ Time’s Up’. I want to stay longer. He is just beginning to know me again, there’s a definite connection. Surely it makes no difference, I’m in his room, I’m not interfering with anyone. It’s not near tea time. Why can’t I stay two hours? He’s dying.  Every minute is precious.

Knock knock. ‘Sorry it’s time’. It’s agony. I don’t want to go. I’ll have to wait another week. I’m in an emotional trauma. Do prisoners get longer?

I tell him I love him and always will. I tell him I’ll be back. I say ‘I’ll bring you chocolate.’ I kiss him with my mask on, on his forehead. He doesn’t respond. He goes back inside himself. My eyes are full of tears. How can this be happening? I should have the same status as the carers. I am the family carer. I know him and can love and stimulate him.

They see my tears. I can’t speak. I try to get out quickly. I ram the PPE in the bin, I wash my hands and I briskly walk to the car. I sit in the car, my head bowed. I cannot stop the sobs. I wait till I can drive the 15 minutes home. I’m numb. The next day is the same. I sometimes just cannot do anything. No motivation for the next day’s tasks. This lockdown and isolation does not help. I cannot wait to mix with friends again.

This is my routine now. I try to busy myself. I allow myself one day of grief after the visit, then I try to keep my mind and body busy. Walking and walking until I tire. School work prep. Box sets. Zoom meetings, Zoom teaching. This is the limbo land and routine  I’m existing in at the moment. Until the next visit.

YIELD – CLAIRE DYER’S MOVING AND DEEPLY PERSONAL POETRY COLLECTION ABOUT HER CHILD’S TRANSITION FROM SON TO DAUGHTER

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Reading Claire Dyer’s latest poetry collection, Yield, is to share an intimate journey told in a way very few people – if, indeed, anyone else – could tell it.

A collection of poems that tell a recognisable story is a rare and beautiful thing, but at times this story is not beautiful, although it does have a happy ending. As a mother, how do you feel when your son comes home and tells you that they are really your daughter? What does it mean to accompany them through their transition from one to the other?

The order of poems in any collection is key and Yield is punctuated by poems with the same name, but numbered; Yield, Clinic, Coming Out. They give the book unity and rhythm, and show the reader the key elements of the transition process, the ones that I guess everyone would go through.

Some readers find poetry difficult; I think because some poets consider their role is to obfuscate, but Claire Dyer’s style is very different. There is a clear communication of ideas, through a clever use of everyday language, for example the opening lines of Abroad:

“the waiters mistake us for sisters.
No, we say, laughing.

We know they know we’re not,
but we’re more than

who we seem.”

In this poem and in others there is a real sense of storytelling; vignettes from mother and child’s life before, during and after the transition process. Fireflies is about a sleepless winter night; the stunning Doing Cartwheels at the Ritz speaks for itself; Wardrobe the heartache of a mother clearing boyhood clothes – which has a truly joyful counterpoint in Shopping:

“Let us go then, you and I, to Primark, Zara, Reiss.
The sky’ll be brilliant and,

around us, shoppers will burst into song,
dance on the up escalators and the down

as we load our arms with gorgeousness,
lacework brushing our shins.”

I do wonder if one of the reasons I love this poem so much is because I know Claire to be an expert shopper; so elegant in her own dress, and generous in her time to help those less  ‘expert’, like me. I remember once we spent hours in Reading as she guided my choice of the perfect handbag, which I would point out that was no mean feat as I detest shopping and had multiple – and not always compatible – criteria, for even this simple requirement.

There are other moments depicted in Yield that, having been alongside Claire for at least some of this journey, I recognise. To have listened as Claire talked about her son becoming her daughter, inch by painstaking inch, was a privilege and I was proud to be confided in, but not being a mother myself there was so much I could not understand.

Not least was that for a long time we called Lucy ‘L’. Having read one short poem, I now get it completely. And that is what great poetry does; it increases our understanding.

“I wrote your names

                 with a knife on my heart and voiced them
in black ink and blue ink   I typed texted

and dreamt the names you were meant to pass on
that you’ve passed on now you have names

I can’t say because try as they might they’re not in my chest like
the rest that are still holding fast to the bones

in my back and my neck and my mouth is full
of dry grasses rivers and trees”

 

Yield is Claire Dyer’s third poetry collection and is published by Two Rivers Press.

 

 

 

Living with Alzheimer’s – The Fight Goes on by Chris Suich

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Today I am watching the morning news about a gentleman called John. He had just passed away and was over a hundred years old.  He was on the news now because he had been talking about his loneliness in his care home just before Christmas and people had sent him Christmas cards and lovely messages which helped him overcome this. His wife had died of Covid 19 in March and they had been married 70 years. It was a sad story. It made me think of Bob and how lonely he must feel in his care home.

It is 300 days since I last held his hands or even had any meaningful close contact.  The care home has stopped all visits even looking through the window at him. This is since the second lockdown in November. No Christmas visits.

He  caught Covid. It was 2 weeks after the Lockdown and then he miraculously fought it and got better from it, only mild symptoms. I asked our GP to go in and check him. She confirmed this but said he was very frail. I know this. I have to see this on my weekly Skype for 30 minutes. This is all the contact I am allowed. It is very upsetting for both of us.

Bob does not understand where I am. He looks around the room for me. How cruel is that for his brain? He can hear my voice and thinks I am in the room. He said once, ‘It’s magic,’ because he doesn’t understand the screen and how I can be on it. He reaches for me. At other times he is agitated and tells me ‘She’s dead, dead, dead’ or ‘Shut up.’ I carry on showing him round the house, playing him some records of his favourite tracks, telling him I love him and Joe and Edd send him a kiss. I wave and blow kisses to the screen. Often there is no response. His eyes are not looking. He is staring but not focussing. Sometimes he seems to be trying to dredge up some memory of me but I am not physically there or touching him so he cannot fathom it.

I have not been idle in my quest to see him. I have gone through all the government guidance. It is updated regularly. Window visits can go ahead. Pod visits can go ahead. PPE guidance needs to be followed and personalised risk assessments done. I point it out but that’s all I can do.

The recent third Lockdown has not helped me. The R rate is low where I live in rural Lincolnshire. My headteacher has agreed to me working from home. Keeping safe for Bob just in case I get the phone call. Teaching on Zoom is not easy.

I have alerted my Admiral nurse and my Social worker and the home manager that Bob is ‘end of life’. I have given them a letter from my GP.  New guidance ‘Rules during Lockdown’ p 5 states that exceptional circumstances such as ‘end of life is a compassionate reason for me to have visits and not just at the very end of life. It states that I am allowed to leave home to visit a care home (it is a walk from my home). It directs the reader to the latest guidance which was 19 December 2020 updated from 1 December 2020. There is a section on exceptional circumstances 2.4

The key message states ‘Visits in exceptional circumstances such as ‘end of life’ should always be supported and enabled and not just at the very end of life.’

A December letter from the care home described exceptional circumstances as imminent death – the last 48 hours and not 6-12 months. They said they will let me know when this 48 hours is by phone and a visit will be ‘timed, appointment only and 2m away’

Obviously, this is horrendous. The GP has been great and has spoken to the home  to confirm Bob has months to live in her opinion.  We believe this too because the trajectory of decline has been profound. I believe his illness has declined more quickly because he has not had the stimulation from myself visiting him. She agreed with us that the home would find it difficult to predict Bob’s last 48 hours as she would too. I am terrified I won’t see Bob for a meaningful visit before he dies. Everyone knows this, including the home. I am tired of their empathy or that their ‘hands are tied.’

Today after a discussion with the Social Worker and Admiral nurse – both amazingly supportive,  the manager rang me to say her regional manager will allow me a window visit weekly if  the tests for Bob’s unit comes back negative in the next day or two. They were all negative a few days before.

Surely I could have been having  window visits in any case as the virus does not jump through glass.

When the vaccine gets to his unit it will protect residents and carers. Most have already had the virus; surely they will have some anti-bodies?

So I wait until the unit have had the vaccine and then wait the 3 weeks for the protection – which will be another month – then I want to visit Bob in his room having had a negative test myself and wearing PPE. I think I am more than reasonable. I hope I am not too late.

I was on BBC news in November at 6 pm and 10 pm. It was my last window visit. It is a harrowing film but truthful. Alison Holt, health journalist is following my story. A local councillor got in touch; she had worked with Bob in his local government role for many years and she is beavering away in the background. I have had messages from friends in London that Bob went to university with many moons ago.

The Human Rights law has been broken – right to a family life, the Equality Act never adhered to – and as I am appointed his voice via the Deprivation of Liberty as he has no mental  capacity as well as POA I am trying to fight for what he would want – which is me!

Sadly, there are thousands more like me. Many didn’t win this battle in time.

THE BOOK I NEEDED TO WRITE – MICHAEL PARKER

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When I was a Chindi Author (a group of indie writers in Chichester), Michael Parker was our elder statesman, the author who had been traditionally published, and who had time for everyone. It was hard to think I could come to respect him more, but since his beloved wife Pat died last year, he has written an incredible tribute which I hope to review for Frost next month.

I have always been able to write. As a teenager at Grammar school, I used to write hooky notes for my mates and charge them one cigarette for each note. You could say I was earning royalties even then. I was a prolific reader too and often found myself in awe of the authors and how clever they were. But I never aspired to become a writer; that was something only the clever ones did: those with university degrees and a middle-class upbringing. For someone like me: a working-class lad with no qualifications, I never believed I could become a published author.

I started dabbling with storytelling in my mid-twenties and wrote a family saga. It never saw the light of day, but it did become the seed, that feeling that there was something there. I remember contacting the Daily Mirror and asking them how I could get my book published. I had no clue about the publishing world. Their advice was to get an agent. It was when I was in my late thirties that I finally succeeded, when Macmillan agreed to publish my first novel, North Slope, in 1978. The Financial Times called me a “gifted narrator”. As rewarding as that was, it didn’t mean I would become a successful author.

Years later, when I was living in Spain with my wife, Pat, I found myself writing and being published. Eventually I ended up with seven traditionally published novels; six of them with Robert Hale of London. I was published in Norway, Denmark and Canada. Now I have fourteen books to my credit: all of them available on-line. But the book I needed to write: the book I want to talk about now, was a tribute to my lovely Pat who sadly died of cancer last year, 2020.

Pat became ill after a five-week trip to Australia and the Far East. She was diagnosed with cancer on our return after an examination for a spider bite. I looked after Pat for almost two years, here at home, until she finally succumbed to the disease. By this time, I’d already given up writing; there was no longer any inclination or desire. My sole reason for living was to be by Pat’s side and nurse her.

When it was all over, I was asked if I would start writing again. I would shake my head and say probably never. But my granddaughter, Gemma, wanted to know more about her Nan, and it was this that encouraged me to write down my memories after sixty years of marriage, and put them in book form: a tribute to my lovely wife. The book has now been published and is called, My Pat, a love story.

I don’t have enough time here to explain what a lovely woman Pat was, but the following is a short extract from the book:

I first laid eyes on Pat when she was fourteen. I was a “mature fifteen-year-old” who could not possibly have any interest in a girl as young as that. Besides, Pat was my mate’s little sister, and it was beyond parody to think I could have anything to do with her. But I still remember her dark hair, lovely eyes and generous mouth, plus the fact that she was wearing a canary yellow sweater. So, it stands to reason I couldn’t have noticed her. Four years later we were married.

Whether I’ll write again remains to be seen, but I am happy that I have published my best work ever.

You can learn more of me and my books by hopping over to my website: www.michaelparkerbooks.com.

 

 

 

 

 

HOW YORK LIBRARIES DIGITAL SERVICES ROSE TO THE CHALLENGE DURING LOCKDOWN

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Gillian Holmes, Executive Assistant at Explore York Libraries & Archives, shares their fascinating story

From the onset of the lockdown in March, Explore York, which runs libraries and archives for the City of York in northern England, saw usage of its OverDrive e-library double showcasing a huge rise in digital reading whilst the physical library service was closed.

“We already had a well-established e-library in place, in terms of functionality and awareness, so we were ready,” said Helen Whitehead, e-services librarian for Explore York.

More than fifty percent of the users during lockdown were new to the OverDrive e-library. Comments received show customers were impressed with how easy the site was to use, and they spread the word to friends, increasing even more uptake. Usage increased in all categories, but especially in children’s e-books. During the Summer Reading Challenge for children, five times as many e-books were issued than in 2019. In total, for the period January 1st to December 1st 2020, the OverDrive e-library saw 77,000 checkouts against 41,500 checkouts for the same period in 2019 an 86% increase.

Generous donations from publishers, together with cash grants from City of York Council and Central Government, meant Explore York kept up with the increased demand for e-books. Having books available even when physical libraries were closed was so important for wellbeing. As one customer put it, “(OverDrive’s Libby reading app) has been a lifesaver for me during lockdown.”

“People are reading all kinds of publications, including some we could never have offered in hard copy,” Helen said of the staggering uptake.

We have had many comments from people expressing appreciation for PressReader, including a health worker at the local hospital: “I’ve downloaded the PressReader app and it looks awesome. Will give me something light-hearted and diversionary to read on a break at work!”

As well as providing online reading materials, Explore York moved quickly to create a virtual “Library from Home.” The website was updated so that customers would easily find what they needed. Archive and Family History sites such as Ancestry were offered from home. Librarians and archivists created new online resources to support home-schooling and reminiscence sessions. Explore York’s well-loved events programme moved to Zoom and has proved to be as popular as ever despite the virtual format. One example is a regular monthly poetry evening, which achieved a record audience with participants joining from around the world. Explore York also developed a number of new online platforms, including a Lego Club on Facebook, a volunteer programme via Flickr and curated watchlists on its YouTube channel.

As library services have been transformed in the last six months, Explore York staff have also been on a real journey of learning and discovery of all that can be achieved online. The experience of 2020 will inform the way library and Archive services are delivered in future.

The last word goes to one library user who speaks for many:

“When I look back over this difficult period, I hope I’ll remember the fantastic books that took me to a different place and helped me reflect on my place in this world. I’ve laughed out loud, I’ve cried and shouted at the iPad. I’m hooked!”

 

 

 

 

 

Living with Alzheimer’s – It’s Nearly Christmas, Bob by Chris Suich

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‘ Hello, Bob, hello. It’s Chris, darling. Wake up, it’s Chris. I’ve come to see you. I ‘ve brought you presents; some cider, some chocolate Santa’s, videos of The Snowman, and some Disney films. ‘

‘It is 3rd December.’

‘It’s nearly Xmas, Bob’.  The first one without him at home, I think. I’ll be home, it’ll be just another day. I’m OK with it.

I haven’t seen Bob for a month. I have been very anxious.
It was the second Lockdown and his Care home was closed to even window visits. I tried to persuade them to let me keep coming – to have a window visit for 30 minutes weekly. It was my lifeline and Bob’s stimulation; to keep him going, to try to hold onto a fragment of me for his memory. I needed to see him. It helped me to be less anxious; to help me sleep, to keep the pain subsided,  that pervaded my chest. I pleaded that Covid could not jump through glass. The government guidance said window visits should still occur, but it didn’t matter. I wrote to the regional manager, even Matt Hancock. The great letter writer, that’s me  but mostly there was nothing, because the government guidance was just that – guidance.

Then the regional manager rang me to say that Covid was in the home and public health had advised them to be in lockdown. This was almost 2 weeks into the England lockdown. I asked him if it was in Bob’s building but he wasn’t specifically sure. That was Friday. On the Monday the nurse rang to say they were trying to swab Bob but he wasn’t having it. No, I thought, he wouldn’t take too kindly to having a stick pushed up his nose! By Thursday when the phone rang and I heard the words ‘duty to inform you ‘ I knew he’d got it. But the miracle was he had only mild symptoms. He has got over it. I think. 4 weeks without seeing him!

So now he is at the window. He is asleep in the Stirling chair lolling to one side. Coughing a little but mainly asleep. He is frail. His cheeks have that hollow look. I talk to him the whole time trying to stimulate some recognition. I say Joe sends a kiss and Eddie sends a kiss all the way from Australia. I tell him I love him and I talk about a load of nothing. He briefly opens his eyes and there is a brief recollection that I think he knows me. I stay the full 30 minutes under the big black umbrella because it is pouring rain and has been all day. My feet are cold and wet in my boots. I am stood in the garden looking into the window, bobbing up and down, trying to get to his eye level. The window is shut– he probably can’t hear me anyway, but I have to come.

I know in a month he has taken another dip but just seeing him peacefully sleeping gives me the contentment I need. It is very difficult. I asked about the rapid testing that the government said would be rolled out to care homes. The manager did not know about them. I said it’s been all over the news. I take a test. I get in PPE. The text comes back negative and I can see Bob. But no, there was no news on that in this care home. I am sure that this will not get to Lincolnshire anytime soon. Then there is the Covid outbreak in the home. Maybe that will make it even more difficult to get inside to see him at his room if he can’t get up. He was in bed for weeks whilst he was isolated and that comes with its own problems and risks. I just want to see him properly. To touch him. No touching since the 12 March. No hand holding, no hugs, no kisses.

I rang the GP – could she help me if he was end of life? Would I have more chance of seeing him properly, have a meaningful visit? I asked the care home when they considered end of life visiting. The last two days. The NHS nursing guidelines say it is  if a person is not expected to live a year. I now have a fight to be able to see Bob properly before the last two days.

The little tree is put up from the garden, we recycle it every year. It is decorated with all the baubles we collected over the last 40 years. Bob would want me to carry on the same and I am. Dr Joe is working nights including Christmas Eve and Eddie is still in Australia. I hope to see Bob, that would be lovely!