Author Archives: Tracy Baines

Living with Alzheimers – Bob and Barbara Windsor by Chris Suich

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Today I read the sad news that Barbara Windsor has had to be placed in full time care as she, like Bob, is suffering from Alzheimer’s.  I understand only too well how hard this would have been for her husband,  Scott Mitchell, especially in these difficult times of Covid 19 when there are so many restrictions on seeing your loved one properly.

I too understand how Alzheimer’s patients have declined in Lockdown. Bob just doesn’t understand why I can’t come in  the home to him. He has no idea about the virus and is locked in his own world without me reassuring him.

We first met Barbara when Bob booked her to turn on the illuminations at Mablethorpe. I think it was well over 20 years ago.  Bob was in charge of the Tourism and Leisure for the local council and our summer hi -light was the illumination switch-on where a celebrity was booked for the afternoon and evening to switch on the lights and  meet the local dignitaries; the mayor and local councillors, Miss Mablethorpe and the like.

There would be a great parade and the sand-train would be tooting, filled with the great and the good of the town; all waving at the thousands of holidaymakers who always turned up. So Barbara was turning on the lights, quite a coup.

That particular day stands out in my memory because it was torrential rain and because the programme we had planned was cancelled to a great extent. Bob was rushing around frantically trying to re- organise things. The children’s marching bands had to be cancelled because the rain was absolutely torrential.

There was so much disappointment.  There were coaches from near and far with all these children dressed up and ready to perform in the parade, their little faces full of expectation, hoping against hope that the rain would stop. Their costumes looking bright and breezy representing hours of sewing and parental expectation.

Bob asked me to look after Barbara for the afternoon as he was busy sorting out the programme; where would the band play safely  under cover? Was it even safe to turn the lights on?

The thunder and lightening roared on.

I was really happy to look after Barbara as I had always liked her. She was a real trouper and really wanted to do a good job. Her giggle was infectious and we had a girlie afternoon gossiping and laughing. She got changed in the local hotel toilets and we had a bit of something to eat. Then she insisted on going to meet the children on the coaches and made everyone’s day by making sure she spoke to them all. She was as disappointed with the weather as the children were.

The switch-on did go ahead and I remember her doing the banter for the crowds  ( some braved the weather with huge colourful umbrellas). Then  the count down and a few more giggles and jokes and reminiscences of her Carry On actors, right up to her pressing the button that switched on the lights. Bob held an enormous umbrella ensuring  she kept dry.  He didn’t.

We went back to the hotel with all the locals and had a buffet and a glass of wine. It was always a late night but Barbara was not the sort of star to rush off back to London. She was a wonderful star in the best sense of the show -business world. Kind, caring and so appreciative of all the fans that had turned up to see her. I am so fond of these memories of her. How ironic that Bob and Barbara are now fighting similar battles.

Bless them both.

Living with Alzheimer’s – My Lockdown Sadness by Chris Suich

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Tomorrow I am going to see Bob in the garden of his care home. He went into full time care 131 days ago – three days after lockdown was declared. From a full-time ‘on watch’ and caring role to the silence and loneliness of an empty house was unbearable. Worst of all, for most of the time I have only been able to wave to him from the road and look up to him at the first floor window.  The ache in my heart was real and I asked my eldest son if I was ill.

My stomach lurched at the thought of relinquishing his care to strangers. They would never look after him like I do. The cajoling and the patience needed. I knew his ways!  I wasn’t even sure I could manage to sleep on my own after having Bob’s hand in mine for so long. Even at night time he wanted the reassurance of holding hands. But I was so exhausted; I couldn’t do another day.

I knew it was getting close as I had been up every night but one for three weeks and the day times were not easy either. Bob was having night terrors; he was terrified and agitated, screaming that I was killing him or he was dying, or I was dying. He would get aggressive and squeeze my arms sometimes bruising me. Such a gentle man but his face in such anguish, it was very frightening. I managed to see our Dementia doctor and we doubled the Respiridon in the morning and the Tramazodone at night. Even that didn’t work, such was his fevered brain. My goodness, how strong must his anxiety be?  He wouldn’t settle and I ended up getting up with him and the daily start to the morning routine settled him. It was often 5am or earlier.

When Bob went into the home I was still working –  in school three days at first, then from home: preparing education health care plans, organising Annual Reviews, ringing parents and writing risk assessments for those front line workers’ children who could attend school. It was important work and I wanted to do a good job.

My primary concern was Bob but there were always other things to worry about, such is life. Our youngest got stuck in Australia on his year travelling.  He eventually found a job with his London company in an office in Sydney for 2 years. Another hurdle overcome. Of course Bob would want him to take the opportunity and live his life. But packing up his boxes of clothes for the courier was a little sad.

I also  felt constant concern for our son Joe who was working long shifts on the front line in infectious diseases dealing with the Covid 19 cases. It just seemed a constant worry.

At first Bob went into the care home on ‘Respite.’ It was the same place he went to on day care on Tuesdays when I was teaching or if I went for a little walking break. They told me a bed had become available on the Dementia wing. I thought it was what he already knew and would settle better there than a new care home. I knew some of the staff from when I picked him up. It was familiar for both of us. It cost £800 a week for Respite but three days later it had gone up by almost £50 a week. I was desperate and I thought we would get support from social services eventually as we were well below the £23,500 threshold.

During this time I was supported by two amazing women who had been with me on this journey: the dementia nurse who knew us well and the Admiral nurse, a specialist Alzheimer nurse.

Our boys were fully supportive and said I could have done no more. However my journey to get funding was a very different matter. Covid 19 did not help me as it was much slower to get help from the relevant services.

After a difficult fight for part funding for continuing healthcare from the NHS (which I won after doing a lot of research and reading their own legal documents) and after completing a favourable checklist with the Dementia nurse. I then endured a 3 hour panel meeting where I had to argue virtually every domain to get the rating that truly reflected Bob’s condition. It was challenging and difficult and a real endurance test (which I was determined to win for Bob) where the agenda was set at the start to minimise every aspect of his condition in order to make sure he didn’t get the funding for having oversight of nursing care  – which he clearly needed. The newly appointed social worker agreed he was eligible and she supported us in the meeting.

How on earth do other exhausted carers fight for their loved ones like I did? Most people don’t have the stamina.

I had made it my project. I went through 250 pages of Bob’s medical records and highlighted the evidence for the 12 domains, his care home notes for the last week before the meeting (I’d asked for them all), his consultant letters, my diary, the hospital discharge letters etc. I studied the law and I knew what was likely to happen. It is notoriously difficult to get this funding but I knew Bob would meet the severe criteria for several domains that were irrefutable – cognition, mobility and possibly behaviour and psychological /emotional well being.

Why did I bother?

Because it was the right thing to do and Bob deserved the right care. He had worked hard all his life and never asked for anything  – now he was at his most vulnerable.

I sent off all the intrusive evidence to Serco:  our bank statements, Bob’s pension statements, copies of our house deeds, our bills, outgoings. It was exhausting. But we then got some part funding from adult social care and this was then backdated to 14 th May but paid directly to the care home.

It was now July and I had paid the Respite costs of almost £850 each week up to the end of June. I was bleeding money. The care home needed a  further £248 a week third party top up as the contract of ‘respite’ had changed to ‘long term care’ from 14 th May. I couldn’t afford it and so decided to move Bob to another home.

I have visited twice a week since this began, sometimes a lot more and now we are able to meet in the beautiful grounds of the home. Bob’s health has declined. He cannot understand why I was not inside with him holding his hand in the days during lockdown. He scratched the glass or tried to put his fingers through the gap in the window to touch my fingertips. He kissed the pictures in the memory book I gave him and he repeated the children’s names over and over and called for them.

It is heart -breaking. He cannot walk or weight bear and is usually sat in a chair or in the wheelchair I bought for him. He doesn’t ask for the toilet anymore. His hair is long, no hairdressers allowed.

My darling Bob is a shell of what he once was but sometimes his face lights up when he remembers me and for those minutes it is worth it. My love for him is endless. I know somewhere deep inside him he remembers me. Sometimes he says ‘ she’s lovely’ or he tries to kiss me by mouthing kisses. I am filled with a strange mixture of terror and anticipation when I go to see him. My stomach rolls at what I might see and how he might be. All I know is I have to see him in order to settle myself. Then I try to get on with my life for the next few days until I am pulled back to him. My Bob.

 

Living with Alzheimers – Waving from the Road by Chris Suich

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Waving from the Road

After a restless night I knew what I had to do. I had to see Bob come what may!

I stood in the side road next to the care home and the care worker brought Bob to the  window on the first floor. He looked down at me and I waved madly but he didn’t seem to know me at first. As I waved my hanky at him the emotion overwhelmed me and the tears spilled down my cheeks as I tried to smile at him and do a ‘thumbs up.’  The lady opened the window and shouted down, ‘He says he loves you’ .

‘I love you too, darling, I love you too and I miss you madly. ‘ I shouted unaware of who else might be in the street watching this lunatic woman.

My lovely Bob is now in a care home as I simply couldn’t cope anymore. The lack of sleep due to the terrible nightmares and terrors that occurred at 4am most nights and the physical demands of it all had finally got to me. I knew the time had come. It had been 5 years and 3 months since we were told there was a memory problem. It had got much worse in the last 2 years and since the hospital admittance October 2018 for severe anxiety.

How was I to know that the next day the home would be in lock down and 2 weeks and 3 days later I still had not held his hand in mine or been able to kiss or hug him.

It was a different kind of torture.

I have transferred one nightmare for another! So I am taking in to the reception area of the home photographs of us and the boys in happy times, little letters to be read to him, pictures that we had at home and cards with little newsy updates on. His soft comfy blanket for the bed, he must have that!

I am trying to keep the memory of us alive. I hope he will remember me a little longer but I know in his heart I am there and he will always be in my heart and soul! I am lucky to have been so loved by him, my husband, loyal and supportive.

This CV19 is a terrible virus and we are all having to make sacrifices but for me it couldn’t have come at a worse time.

Living with Alzheimers – A Parallel Universe by Chris Suich

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 I sometimes think I’m in a parallel universe!
Is there a link between autism and Alzheimer’s? I sometimes think so? As a special educational needs co-ordinator I often come across parents who talk about obsessions in their children’s behaviours. This has been a similar thread throughout this journey. It began with jam and cornflakes!
I remember going to see our consultant when Bob was in denial about his diagnosis.
‘Tell the Dr about the cornflakes,’ I cajoled.
‘What about the cornflakes?’ Bob snapped.
‘You know the fact we’ve got 18 packets of Special K with red fruit on the larder shelf!’
‘Yes well that’s because they are on offer at Co-op and I’m saving money.’
‘But what about the jams?’ I continued as Bob kicked me under the table to shut up.
‘Well, they are all different flavours’, he explained to the doctor (All 20 jars of them). This was the thing with Bob he was so clever he always had an answer which sounded quite reasonable.
Then there was the obsession with buying the same type of things. The shirts, the mugs, records, and strangely hoodie.! Most bizarre for someone that had never wore a hoodie in his life!
Then there was the collecting of things like leaves, – full carrier bags brimmed to the top with leaves picked during Autumn walks. A neighbour told me about the litter picking too and the going through the neighbours bins checking they had put the correct things in the correct bins!
Then re- distributing anything he found into the correct bin!
Our neighbours were always tolerant and kind. Even the shop keepers were lovely letting me take back items he bought for a full refund.
But how strange. Just another stage of the dementia which I managed as best I could.

 

Escape to a Chateau or Primrose Square

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spring reads for Frost magazine

As we all remove ourselves from our ‘normal’ and create a new way of living, for a while at least, it’s the perfect opportunity to order some new books and escape among the pages. I’ve always found reading the perfect distraction when times are tough and why not pry into other people’s problems for a while – even if they are fictitious. 

I’d normally add links to Amazon or Waterstones at the end of my posts but for a change – and to support our local independent bookshops I’ll be adding a link to the Booksellers Association where you can find your nearest indie bookshop. (Just tap in your postcode and the search engine will do the rest.) Many small bookshops – along with other businesses – will be struggling in the present circumstances and are offering to deliver if you are self isolating. Failing that why not try HIve.co.uk. There are many ways to support our local bookshops – when all this is over we want a high street to go back to.

 

So, to the books!

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A Year in the Chateau by Sarah Long

We might not all be able to escape to the chateau but would it be roses all the way?

When Nicola’s husband, Dominic, retires they decide not to spend their days finding hobbies to fill the time until Countdown is on. Instead, they fulfil their life-long fantasy of buying a country house and filling it with their dearest friends. Their children are grown and should be more than capable of looking after themselves and freedom beckons. But where to spend it? And who with?

A plan emerges, albeit coloured by rose-tinted glasses, and  with seven of their friends they pool resources and  invest in a château in Normandy. The dark days of winter and broken Britain are cast aside for new adventures in Northern France. But as the year progresses sunlight only makes the cracks in the dream visible. There are quarrels and secrets – can friendship survive as dreams give way to reality.?

A warm and witty read.

A Year in the Chateau is published by Zaffre RRP: £8.99
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The Women of Primrose Square by Claudia Carroll

Claudia Carroll takes us back to Primrose Square with a new set of characters.

When Frank Woods at number seventy-nine Primrose Square comes home to a surprise birthday party thrown by his wife and adoring children, it is his guests who get the real surprise.

Finding himself alone, he befriends the cantankerous Miss Hardcastle, who hasn’t left her home for decades, and Emily Dunne – fresh out of rehab and desperate to make amends.

As gossip spreads through Primrose Square, every relationship is tested, and nothing in this close-knit community will ever be the same again.

Full of warmth, humour and compassion.

Published by Zaffre RRP £7.99

 

 

My Writing Process – Tracy Baines

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I’ve always wanted to write novels, but it felt overwhelming, and to be honest, I didn’t have the confidence to dive into something so all encompassing – so I wrote articles and short stories. I’m so glad I did something – other than procrastinate. I learnt so much from writing short stories: brevity, character, structure and so on. It’s the same skills – you just need more stamina if you’re writing a novel. Gosh, I never knew how draining sitting down all morning could be.

I could always find the time for a short story and it taught me that I could finish things. Finishing is so important. I’ve lost count of the times I’ve heard people say they’ve got loads of beginnings. If you’re struggling, I’d say choose one thing and keep going until you finish it. My short stories have been published in magazines various magazines in the UK and abroad.

At the moment I’m working on the Christmas with the Variety Girls  – the sequel to The Variety Girls which was published by Ebury Press in February 2020.

I always write straight to my computer but I make a huge amount of notes by hand. I also go back to writing by hand if I get stuck and can’t get the words flowing. I don’t know why it works, but it does. Most mornings I’ll write a page of A4 of free flow. It’s like a warm-up to get the motor running and I find I can express myself more easily when I do this.

Daydreaming is important to me too. I play around with ideas for as much time as I can before I begin to write. I’ll read a lot of books for background details and research, and some of that will inspire a character or a scene. My books are set in the Variety Theatre during WW2 and I love reading books about old theatre and music hall stars to get creative thoughts flowing.

When I start writing I tend to stick with one character and work out what she wants most of all. Then I work out what could stop her getting it. Gradually all the other characters and events start to pop into my head. I make a synopsis, then develop a plan or outline which will change as I go along. It’s like having a road map. I can take detours here and there, but I always have a road to go back to. I’ve found this stops me from panicking about where I need to go next.

I try to work for a few hours each morning, actually writing, but I’m thinking about it most of the time. I might work in the evening if I’ve had a disrupted day. I tend to write more when I’m past the middle point. Some days are better than others. But if I’m having a bad day I’m happy as long as I get something down that moves the story forward. I know I can always go back and fix it. Again, the short stories helped me because I am not afraid of deleting huge parts of text to get to the nub of the story

Early in my career I was lucky enough to be mentored by Margret Graham – who also writes as Milly Adams and Annie Clarke. I’ve learnt an enormous amount from her and also from reading her many books. I am loving her latest – Girls on the Home Front series.  She is a superb teacher and if you ever get chance to get to one of her workshops crawl there if you have to. She’s also written two books that are brilliant in explaining things such as show and tell etc. No waffle, just practical advice and instruction – and plenty of exercises. You learn how to write by writing – you have to do the work – but having someone wonderful to mentor you makes such a difference.

Margaret’s explanation of structure took me time to understand. It’s very simple but there is such depth to it. It is foremost in my mind when I sit down to work out my novels: normal world, point of change, a rising arc of tension, crisis point or darkest moment, the slipper test, resolution. If you want to know more I can highly recommend The Writers Springboard. She describes structure so simply.

When the writing’s going well there’s nothing like it. It must be what drugs are like. I forget time and am totally in my little world. And when a character  arrives unannounced and tells you their story. Sublime. The difficult part is maintaining the momentum when the words aren’t flowing. It’s turning up at the desk, day after day, in the hope that this will be the day it all starts making sense.

My advice for other writers would be not to think you’re too old, not clever enough, thin enough, rich enough. Have confidence, work hard but most of all enjoy it. It will shine through in your writing.

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The Variety Girls published by Ebury Press £6.99

www.tracybaines.co.uk

Living with Alzheimers – I wish I’d paid more attention to Paul Daniels’s Magic shows by Chris Suich.

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Living with Alzheimers- Bob and Chris Suich

It was a big match day for Arsenal. I’d got the ‘football room’ suitably attired for Bob with the lucky Arsenal gnome, the two Irish leprechauns and the Gunnersaurus. They were lined up looking towards the TV. We were waiting for our friend to come round and watch it with us.
Bob had recently had a bit of an obsession about door handles. He kept trying the handle, pushing them down fiercely (several times) to such an extent the latch was sticking and I couldn’t get into some rooms. The only way I could get the latch to move back was to get my bank card, slide it in the gap, and push the latch back. In the end I had been so annoyed that I’d actually taken the handles off the door in the ‘ football room’. I left the door wide open with a note sellotaped to it ‘DO NOT SHUT’ and put a square pouffe in front to hold the door back to the wall.
Our friend came round and the game became very exciting. The beers flowed and we became totally absorbed in the match. Suddenly I realised the door was shut.
I screamed out in horror. ‘ The door’s shut!’

‘It wasn’t me.’ chanted Bob over and over (who was sitting on the pouffe.)
‘It must have been you though, Bob because you’ve moved the pouffe and shut the door at the same time.’
‘It wasn’t me,’ Bob repeated.
There was no door handle to get out and the door was fast shut. My purse with the bank card was in my handbag – the other side of the door. My phone was also in my bag so I couldn’t even phone a neighbour for help. I had a vision of us all being locked in until the postman came the next day, and us waving frantically at him shouting ‘Save us. Save us!’
How could we get out? I remembered the front door was unlocked – if we could get out of the window. But the window was so small. There was no way I could get out as my back was playing up and if I tried to twist it my muscles might go into an agonising spasm. Our friend is a 6 footer so I couldn’t imagine he could get through the window. But Bob was thin and small perhaps I could persuade him somehow to try to get out.
Bob was the right size but could he understand how to climb out of the window? I started to try to make him understand.
‘If I tipped you up, Bob, out of that top window and held onto your ankles you might be able to do a forward roll like the SAS, do you think you could do it?’
‘Not me.’
That was when I wished I had paid more attention to those Paul Daniels magic shows where they put people into a box and they become very small people, contortionists I think they are called. If only I knew how to make myself that small I could have got through the window. I had a flash back to a show Bob had booked where I had watched a young lady supposedly chopped up with a sword and all the time they were in a tiny space where the sword never went.
Then our friend saved the day.
‘I think I might be able to get out of that window’ he exclaimed.
‘ Really?’ I answered, a little hope in my heart.
We cleared the windowsill of the ornaments and pictures and our friend climbed up. It was at this moment that the ridiculousness of the situation took a hold of me and I became a hopeless giggling mass. Desperately trying not to let our friend see me laughing as he was struggling to balance with one leg either side of the frame. He became that very small person I had seen in the magic shows.

He managed it! He jumped down onto the path. He walked in through the front door and between us we did the bank card trick in the edge of the door where the latch was, and managed to push it backwards so the door opened.
Well, that was a game to remember for all the wrong reasons!

Thank goodness Arsenal won.

Living with Alzheimers – A New Challenge for 2020 by Chris Suich

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new challenge for 2020 Bob Suich Chris Suich

Welcome to the New Year 2020! Christmas came and went. We had a pleasant enough one without incident. Can’t say that of the new year though.

The first few days of 2020 were a bit of a challenge. I noticed Bob’s ankle was a bit puffy after his bath. I’ll have to keep an eye on that, I thought. Perhaps his sock was too tight around his ankle, but I thought I’d put on his open topped non-elastic ones.

The next day his lower left leg was huge and his foot resembled a block of lard. No understanding or pain noted from Bob.  It was Saturday, no GP available. I went on the NHS website to check and rang 111 just to make sure I wouldn’t be wasting anyone’s time if I took him to the ’Walk in Care’ at the local hospital. I realised it probably was a blood clot as the answers pointed to that. The lady rang me back from the NHS helpline to tell me I’d got an appointment for 8.30pm and to take him in. We were seen by 11.30pm.

It was an endurance test for us both. Bob wanted to go to bed, he’d been saying this every two minutes since 3pm and was getting more and more distressed.

‘Let’s do a runner,’ he whispered conspiratorially. It crossed my mind. Then he’d ask everyone if they were a doctor and that he thought it was ridiculous that there were no doctors there. If someone spoke loudly or a child squealed it upset him.

There was a blood clot. He had a scan to confirm on the following Monday. We had to go in again on the Sunday and Monday for an Injection of blood thinner in his tummy; another endless wait.

Finally, I think the penny dropped that waiting for hours for a two minute injection was stressful for Bob and the waiting audience of patients. I was presented with 10 injections, a safe needle disposal box and told to get on with it. Nurse Suich at your service!

Poor Bob. I was now the baddy, hurting his tummy every night. What fights we had getting that needle in – and how close did I come to getting it in me, not Bob.  A Carry On film comes to mind.

I still feel though the physical side of caring isn’t the hardest part: the hardest part is the loss of freedom, the absolute tie, the relentlessness of the duty, the repetitive nature, the hyper vigilance of constant watching, the fact you can no longer call your life your own.