Author Archives: Tracy Baines

Living with Alzheimers – We Are Best Friends by Chris Suich

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Today, as I do three times a week, I visited my lovely husband Bob who has been in care since 10th March 2020 with the devastating illness Alzheimer’s.

It is amazing that he is still with us as he was not expected to live beyond last Christmas 2021 – according to our local GP who saw him after the first bout of Covid 19.

He is poorly there is no doubting that. He cannot walk or do anything for himself, even holding a chocolate button or a birthday card is beyond his cognition now. Recently it was our 43rd wedding anniversary. I took him a card that had a picture of two teddies in a car, I thought he might understand. Probably not.

However, he tries hard to communicate with me, chitter chattering nonsensical words, turning his head, looking at me directly and smiling. The love is still there for me and I see it in his eyes and mannerisms, and occasionally he speaks a phrase that makes sense, or he tries to sit up and puts his lips together for a kiss. For my part I still have him. I can kiss him and hold his hand. I can tell him my news and ring our sons and they talk to him when they can. He says ‘ Hello’ and he kisses the phone. I know he recognises their voices. They are wonderfully kind and patient but also brave and full of humanity. I am proud of the way they handle it all.

Today he is sat up in a Stirling chair (nice and deep and tipped slightly backwards so he can’t fall forwards), dressed nicely, shaved and clean, looking at the TV. He likes Tipping Point as he likes the bit where the coins drop down, and as he was brilliant with numbers in his past life he will read out the amounts the contestants win. Then it is The Chase. I tell him he is on my team and I try to answer the questions and he watches the red writing turn to green writing if I get it right.

The carers are kind and I know they make more effort when I come in. I insist they get him up as he likes to sit upright in a chair and I think is is better for his digestion. No one wants to lay in bed all day and he is not any different.

I take him the food we enjoyed together. He knows it. He looks for the red carrier bag with pictures of Parisian cartoons on we bought together in Paris. I like to think it evokes some happy memories of our time together. That and the food.  Maybe somewhere deep inside him he’ll associate the food with me. Sometimes I get a positive clue that this is the case. But in any case I am satisfied that he is enjoying the food and relishing every mouthful. He eats everything we would normally eat, apart from chewy meat or stringy chicken as he doesn’t like the texture. Or the sloppy food which is sometimes given by the home. I feed him from a teaspoon as he opens his mouth a little. He is used to a beaker and the home gives him fortified drinks to keep his weight up.

It takes a little while to get him going with a spoon, but once he gets the taste of the food he opens his mouth wide and as he has all his own teeth he chews well and swallows fine.  Today it is Lincolnshire sausages, two chopped, onion gravy, parsnips and broccoli and mash. Then chopped mince pies and extra thick cream blobs. It only takes me 30 mins and the swallowing is interspersed with ‘ lovely’. I have had a little victory with the food situation.

I couldn’t understand why he was on a semi-soft diet when he ate my food so magnificently. Once he pouched his food in one cheek with me and also with a carer but that was because he didn’t like the chewiness the stringy consistency but he never did it again. Not enough evidence I thought for giving him the sloppy soft diet daily that he clearly didn’t enjoy. I asked for a speech and language Dysphagia assessment as if these professionals thought the same then I would agree with it. However, Bob did not meet the criteria for a dysphagia assessment so therefore I reasoned he could still eat the chopped normal food. That is now supposed to  happen whether I’m present or not! Bob also has a beer, or some wine and on Sundays a tot of port. Everything I would normally give him at home. Why not?

After this nutrition he will often say something. ‘ Are you alright for money?’ or ‘Be careful’ or sadly ‘ Let’s go home’

I play a range of our favourite music and music videos I’ve downloaded onto my iPad for him to watch. He loves these. I show him ELO Mr Blue Sky, Telephone Line, Wild West Hero and several Beatles black and white films with music tracks. I have a great playlist now and Bob enjoys it. I see the light switch on behind his eyes and his fingers and toes twitch. He becomes relaxed and content. I know it makes a difference. It makes him feel better and it is good for his well being. I don’t like to think of him on his own laid in bed with limited interaction. But I know the carers are busy, and Bob is easier to manage in bed as many residents can walk and are more difficult to keep occupied and safe. But all residents need to have their well being addressed and music is game changing.

Emotionally for me it is a roller coaster. I hate to see him struggling to communicate getting frustrated, pulling at his hair, trying to explain. ‘It’s horrible!’ he says. I hate it when he says ‘Let’s go together’ or ‘Is it time to go home?’

I still look forward to seeing him and he is always in my mind even though I try to fill my life with being busy. I have my Inner Wheel and Rotary endeavours to take part in. I volunteer at a local school weekly and have a wide range of friends to see regularly. I dread a phone call from the care home in case it is some bad news and my stomach lurches when I see who is ringing me on the phone. Sleeping all night is difficult as Bob comes back to me in the middle of the night. I have tried to get on with my own things in the day but at night he is in my unconscious brain. I remember the little things we did together, often long forgotten. I am probably more anxious as Bob smoothed out all my worries. He was a good match for me.

It almost makes me cry nowadays, when he tells me ‘You’re lovely’ or ‘ I’m sorry’. I tell him everything is fine and not to worry and that he’s lovely too. He sometimes is sad and downcast and I have a job to get him to respond to me but he usually does in the end.

Sadly he doesn’t know I’m his wife but thinks I’m his best friend.

That is ok we are best friends.

 

Steel Girls on the Home Front – Michelle Rawlins

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Steel Girls on the Home Front is the third book in the Steel Girl series but can easily be read as a stand alone. That said, it made me want to go back to read books one and two to catch up on the characters’s stories in detail. The author makes them come to life from the first page and I was immediately wrapped up in Patty’s worries for her sweetheart, Archie as she tries to discover his secret. But Patty is only one of the three musketeers – the others being Nancy and Betty. I have to say I have a soft spot for Betty, always wondering what fund raiser to embark on next.

What I enjoyed most about Steel Girls on the Home Front was the sense of community, of the women, whatever their age, all pulling together to get through such strange times, not knowing where their men are, nor what they are doing. You feel their worry and cheer their uplifting ‘keep calm and carry on’ spirit.

There is lack – of men, of food, of security – but there is also so much gain – of warmth, community and friendship, and this is what helps each woman through their individual struggles and loneliness.

And although the ‘Three Musketeers’ are brought together by their work at the steel works it’s by no means the dominating force in the story – although you can be sure that the fine detail is spot on. Michelle Rawlins is also author of Women of Steel – The Feisty Sisters who Helped Win the War. Her meticulous research shines through but never slows down a story that moves at a cracking pace.

A warm hug of a read!

Description

As the war rages on in 1940, Vickers steelworks is busier than ever which is proving tough for Nancy as she juggles working long hours and looking after two young children, all while waiting for her husband to return home safely.

Betty is determined to roll up her sleeves and joins the Women’s Voluntary Service to keep busy and stop from fretting about her fiancé.

But Patty is left worrying about someone closer to home. Sweetheart Archie has been keeping a secret from her, and one that puts him in great danger. Will it threaten to pull them apart for good?

And with life at war tougher than ever, can the factory sisters rally together to find a way through?

Michelle Rawlins is an award-winning freelance journalist with over 20 years’ experience working in print and digital media. After learning her trade, Michelle began her freelance career writing for national newspapers and women’s magazines, concentrating on real-life stories and is the only person to have interviewed the surviving women who actually worked in the Sheffield steelworks in wartime.

Steel Girls on the Home Front is published by Harper Collins 

Available on Amazon

 

The Attic Child by Lola Jaye

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Here’s the book for the weekend – and it’s a long bank holiday so you’ll have plenty of time to indulge yourself and be swept away by the wonderful The Attic Child by Lola Jaye.

This was such a powerful, if at times uncomfortable, read. A dual timeline novel telling the stories of two children trapped in an attic almost one hundred years apart.

From the opening lines, I was desperate to discover what happened to Dikembe, a young African boy who is taken from his family in the Congo at the tender age of ten and travels to England as a companion to explorer, Richard Babbington. Lola Jaye takes you by the hand and leads you on a journey that interweaves the lives of Dikembe and Lowra as they navigate their path through the terrible circumstances in which they find themselves.  It was at times a dark and disturbing read but a story of the redemptive power of friendship.

Lola Jaye’s inspiration for this novel was triggered by a photograph she saw at the National Portrait Gallery – part of an exhibition on Black British Victorians.

One of the photographs was of a young African boy, Ngudu M’hali, pictured alongside the explorer Henry Stanley. The boy had a short and tragic life, taken from his family and either sold or given to Stanley as either a slave, servant or companion. Accounts differ and the truth may never come to light. Ngudu M’hali drowned in a canoeing accident on the River Congo in 1877 when he was twelve years old but The Attic Child explores what might have happened to a boy in similar circumstances had he lived. This is not Ngudu’s story – but inspired by the photograph Lola Jaye began to craft a wonderful tale of one such boy, Dikembe. Oh, my heart broke for that small child, torn from his loving family and thrust into an unfamiliar life in an unfamiliar land.

A timely book and one that has stayed with me long after I reached the final page.

Two children trapped in the same attic, almost a century apart, bound by a secret.

1907: Twelve-year-old Celestine spends most of his time locked in an attic room of a large house by the sea. Taken from his homeland and treated as an unpaid servant, he dreams of his family in Africa even if, as the years pass, he struggles to remember his mother’s face, and sometimes his real name . . .

Decades later, Lowra, a young orphan girl born into wealth and privilege, will find herself banished to the same attic. Lying under the floorboards of the room is an old porcelain doll, an unusual beaded claw necklace and, most curiously, a sentence etched on the wall behind an old cupboard, written in an unidentifiable language. Artefacts that will offer her a strange kind of comfort, and lead her to believe that she was not the first child to be imprisoned there . . .

 

The Attic Child is published by  Pan and is available from all good bookstores and online retailers.

 

 

 

A Daughter’s Hope by Donna Douglas

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A Daughter’s Hope is the conclusion to the Yorkshire Blitz trilogy by Donna Douglas. I do hope it’s not the last we see of the MacGuire family who are a fantastic bunch of characters – or are they real? They seem like it when you’re reading. It’s like peering into a window and watching as their lives unfold. Matriarch Big May MacGuire leaps from the page, a strong woman in charge of her noisy, squabbling, good-hearted brood.

It’s Autumn, 1942; the Blitz has come to an end and the residents of Jubilee Row begin to get their lives back on track. Twins Sybil and Maudie join the WAAF to do their bit for the war effort. The girls may be twins but each has their own personality, and they face their own struggles when it comes to adapting to force’s life and discipline.  Will they be able to thrive in this new environment?

Back in Hull, 42 year-old Florence, the eldest of May Maguire’s daughters, has a good job as supervisor of a typing-pool but feels thwarted when a new manager joins the staff and threatens to undermine her authority.

May understands Florence least of all her children and Florence’s strong independence keeps her hovering on the edge of family life. The love and awkwardness, the misunderstanding between the two women was gently revealed from the first chapter and I really enjoyed the complex relationship between Florence and her mum.

There is humour and warmth,  and a strong sense of making the best of things – there’s never a dull moment among the folks of Jubilee Row.

I have to say that having read the others in the trilogy this is my favourite. The plotlines are deftly interwoven and the skilled writing and storytelling draws the reader along until the very last page. I was sad when it came to an end.

I hope there’s more to come from the MacGuires, but if there isn’t I eagerly await the next book from Donna Douglas.

A Daughter’s hope by Donna Douglas is published by Orion and available from all independent bookstores, Amazon, and other online retailers from 28th April 2022 .

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Living with Alzheimers – Trying to fathom a way forward for a ‘good’ visit by Chris Suich

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An ominous feeling came back to me today. Covid is back in the care home. Not in Bob’s wing but still, it seems to be getting closer. I have heard of so many people with it in our market town. I am being ultra careful. PCRs and lateral flows on visiting. I cannot go back to not seeing Bob again. As an Essential Caregiver I should be OK – even with an outbreak, providing I don’t catch it! At least that information is in the government guidance due to Bob being ‘end of life’.

I heard that some staff who have not been vaccinated (as Nov 21 government  direction) have left and I wonder how this will affect the staff ratio. At least I can help Bob when I’m here so they won’t have to worry about feeding him.  I put on the PPE and walk swiftly to his room. 

Bob is very tired today. He is laid in bed comfy and warm. His head has fallen off his pillow and he is lolling over the raised plastic sides of the special ripple bed. 

I kiss his forehead and tell him I am there. ‘Chris is here and I love you very much’ 

He smiles in his sleep and I am content with that. 

I arranged the things I had brought for him. The can of lemonade, the blackcurrant tart and the chocolate buttons. The iPad is already loaded with the music for the afternoon. Fleetwood Mac and The Beatles are the albums for today. I always show him the LP cover. Sometimes he reads the title and the group. I wonder if he can remember something of the design. These LP covers were so well thumbed by Bob in the 70s and 80s.

I start the music softly even though Bob is asleep because I think he might hear it and wake a little. I am struck by the beauty of the lyrics of Songbird.

Apparently McVeigh wrote it about the self sacrifice of love and about how much love the band members had shared together over many years. I too feel that sentiment  in the quietness of Bob’s almost stark room; an enormity of love for him. For everything we have shared together, a whole lifetime of experiences and good times. I know he is on his final journey and he is leaving me a little more each time.

He tries so hard to get back to me, and I still valiantly try to stir a memory, however faint. His furrowed brow, his look of bewilderment are etched on his face regularly now. He will put his hands to his head and will shout nonsensical words and sometimes pull at his head as though in an insane terrified fever. It must be terrible to try and make sense of something that was once so well known, or have a memory at arm’s length, never to grasp it. It is awful to watch. But he looks very peaceful today. 

Bob a Good Visit

I decide to clean his nails whilst he is asleep as he is sensitive to the slightest touch. He doesn’t resist when he is asleep and the liquid soap and wet ones soon do the job.  

I have decided to chat like I always would even if Bob is asleep or inside himself.  To be normal. To tell him my news and send all the messages from friends and family. I give him a kiss from Joe and a kiss from Eddie, our sons. I tell him I helped out at the sing a long at The Dementia Cafe this week. I tell him they gave me the microphone and I ended up singing at the front. I tell him someone asked me if I was your wife and told me that they had worked with you at Tedder Hall and to give you a hug from them. They said you were a lovely man. But of course I know this! 

After two hours you begin to wake. I sit next to you so that your eyes, when they open, are at my level. ‘ Hello darling it’s Chris and I’ve come to see you’ 

You smile like you know what I’m saying. Well that’s a good start. 

I ask the carers to sit him up as his core strength has gone and he always sleeps on a slant and then gets in an awkward position. The ladies move him onto a pillow and I sit him up on the ripple bed. I put on his glasses and tell him again who I am. He looks vacant and seems to be staring ahead, not really seeing. 

I have a routine and it is familiar to Bob as I do the same thing every visit. 

I tell him I’ve brought him chocolate buttons and he opens his mouth ready for me to put some in. He understood that alright! It gets him in a good mood. 

Then I try to get the drinks down him. He sometimes doesn’t seem to drink much. It takes a long time and patience is needed. I have that. I always see a difference once I get the fluids into him.  I pour the lemonade into a small lipped beaker. It’s a job to make sure I don’t give him too much at a time. Being vigilant I manage two beakers of drink. I try to get 3-4 down him in the 3-4 hrs I stay. He seems to wake a little more. 

‘I’m staying to give you your tea tonight Bob.’ It is mashed potato, carrots, spring greens and meatloaf, all chopped up of course. I have brought in the pudding – blackcurrant tart. I feed Bob with a spoon. He takes a while but today he eats quite well and doesn’t push it back on the spoon. The blackcurrant tart chopped into small pieces is enjoyed but it’s always the puddings that go down well. Recently I’ve taken to making him food from home and he loves that and his mouth opens wide. Pasta and poached salmon are his favourites.

After tea I put on the TV for the 6 pm news. Bob always watched the news. He sometimes says’ Hello’ to the newsreader. But before that it’s Tipping Point which he loves. He likes to see the counters dropping down and he can still read the amounts of money the contestants win. I always give him a commentary of what is happening and he seems to get something positive from it. 

I have learnt that to say ‘I’m going now’ makes him agitated so I now say ‘ I’m going to order you a hot chocolate’. I give him another kiss and leave. He is content.

It has become increasingly difficult to think how to help Bob have a good visit. He is getting so he is unable to respond or understand much nowadays. I have had to come to terms with the fact that perhaps this is a good visit now. This is the best I can expect. 

Occasionally he will say ‘ You’re lovely’ or You’re my best friend’ or if I’m lucky ‘Thank you, I love you’. In some ways that’s harder when he seems to realise, but I’d take those words any day.

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.