Category Archives: Relationships & Love

Living with Alzheimers – A Parallel Universe by Chris Suich

Posted on by

 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.

 

SISTER SCRIBES: KITTY WILSON ON HOW ROMANCE IS HOPE

Posted on by

Back in November I wrote a post here about Why I Love Romance as a genre. I explained that I had inadvertently written an essay on this subject and that first post covered how I believe romance is universal and utterly relatable, especially romantic comedy, my own specific sub-genre.

Today I wanted to return to that theme and talk about romance novels giving us hope in an often bleak and daunting world. I truly believe this – that romance novels help us have hope in life, the absolute certainty of a happy ending is sometimes exactly what you need to escape real life, whether it be dreadful news or just the day to day monotony.

Whilst trawling the internet a while ago I came across a tweet from a writer, Angela James, asking people to share their romance positive moments. The response was overwhelming, hope was right up at the top of that list and I have picked a couple as illustrations as they say it so much better than I could.

‘I found Romance after my brother commited suicide. It was a very dark and hopeless time, but Romance taught me that hope can rise again even after the darkest of moments and love, in all its forms, can be found if you just open yourself up to it.’

‘I began reading romance novels after my first miscarriage. I believe they re-wired my brain and helped me remember what optimism felt like.’

‘I started reading romance novels while was undergoing cancer treatment. I needed positive, escapist stories that promised a HEA.’

Now I’m not saying that romance is a cure-all, of course it isn’t. But romance novels are often easy and quick to read thus providing escape for an hour or two. They can’t rid you of the burdens that life brings, but being lost in the pages of a novel can give you a brief pause from them. I fell in love with romance when I became poorly at the age of thirteen. My friends were ringing me and asking if I was dying (I wasn’t but they were a dramatic bunch) and all I knew was that my body wasn’t behaving as it should. If I hadn’t had romance novels to read, to lose myself in, I think I would have struggled to cope.

We all know that life is not a romance but these books do give us the thrill of living vicariously, of confronting challenges and winning, of reading about someone’s longing turning into reality. To be fair, that’s true of reading in general but with romance you get the added ahhh factor, the satisfaction of a romance played out, of willing the hero and heroine on without any of the risk or leaving the comfort of your own home. I can be sunbathing on a tropical island or dancing the cha-cha whilst in reality I’m wrapped in a blanket and drinking a cup of tea, ignoring the stuff that I don’t want to have to deal with at that minute.

Happy-Ever-Afters are a reminder that not everything in life is bleak, that there’s the possibility of dreams coming true, that life contains so much positivity. Building a future with someone you love – the pinnacle of Romance – is forward-facing, optimistic, both the essence of hope and an act of hope. Romance Novels are the reassuring and toasty comfort blanket of the fiction world and I love them.

Edit – I wrote this well before Covid-19 was dominating the globe and considered pulling it, but I stand by the fact that in an ever-turbulent world the predictability of a happy-ever-after is reassuring so I’m off to hibernate with my kindle. Keep safe everyone,

Much love, Kitty x

 

 

 

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

Posted on by

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

Posted on by

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.

Living with Alzheimers – The Christmas Market by Chris Suich

Posted on by

chris-suich-christmas-heart-i-love-you

Ho ho ho!
We are going to Beverley Christmas Market today with our friend.
‘Hurray!’ Bob says.
We get picked up at 9 am with our friend and arrive at 10.15am near the race course and park near the common land.
It was a scenic journey and a crisp winter day. Bob enjoyed looking at the landscape and commented that he could see for miles. We took a risk and didn’t take the wheelchair which I’d bought about a month ago for longer walks. Bob has started leaning to one side and the more tired he gets, the more he leans.
We set off walking along the common.

Two minutes later and Bob has had enough.
‘How much longer?’
‘Just a little while longer‘ I answer.
He holds onto my hand like a vice, crushing my fingers.
It is scary when your spacial awareness and depth is compromised.
Constant reassurance and guidance as to where to walk and preparation for getting up and down uneven steps or paths is called for. I’m determined that we walk every day as I know once the movement goes I won’t be able to manage him at home.

It is very crowded, even this early. It is Christmassy and the brass bands are playing Christmas carols which Bob recognises and joins in with, singing the lyrics and choruses he remembers.
‘Jingle Bells, Jingle all the way,’ he sings. Sometimes he just la la’s the tunes, quite loudly. I’m so happy when he remembers something and it brings a big smile to my lips.
We manage a few stalls but Bob finds the crowds difficult and the stalls are very busy. My friend and I take a hand each and we walk together, the three amigos.

I look for benches where Bob can have a rest and see one near the Beverley Brass Band. I get some change and put it their tin and the gentleman moves his music sheets and we sit for a while. My friend and I take it in turns to have a look at the stalls whilst Bob sits happily listening to the music with the person that is left. I can’t leave him to stay on the bench himself because he would get up and walk around looking for me. He went missing once – for 6 hours.

We head back towards the car. Bob spots a stall selling small hearts to hang on the Xmas tree. They are made from felt and embroidered with messages. He picks a white one with red embroidery and wants to get it. He holds it and tells the lady at the stall he has no money.

‘It’s okay, darling. I’ve got my purse and you can buy it,’ I say.
It says ‘I love you’.
That’s the best gift I could have, I think, when he gives it to me. It’s now on our little tree.
Happy Christmas everyone.

Living with Alzheimers – A Typical Day by Chris Suich

Posted on by

chris-bob-suich-living-alzheimers

Bob wakes up at 8am today. His head has moved from his pillow to mine. How did that happen? I always put his head squarely in the middle of his pillow so how does he move to mine? He tries to get as near to me as he can because he needs the warmth and reassurance of my skin on his, even my breath when I breathe. It is a bit claustrophobic but I understand.
‘Are you Gary?’ he asks
‘I hope not,’ I answer
‘I’m Chris. ‘
‘Yes, you’re Chris, my number one’
‘I’m your wife. We’ve been together forty years’
‘I love you.’
This will be the start of 50 ‘I love yous’ throughout the day. Then it’s straight into the routine- helping him out of bed and toileting him, then the bath.

‘I’m not going in there.’
‘You are, but I will help you. I’m making it bubbly and warm ,and you’ve got your magic mat in, so you won’t slip.’
‘I’m not going in there!’
‘But I want to make you look lovely and smart, and make your lovely silver hair shine with my special shampoo.‘
He considers for a moment. ‘How do I get in? I’m going to fall.’
‘No, you’re not, because I’ve got you.’
‘Okay,’ he relents. ‘Just for you.’

I place Bob’s hand in the sink tell him to lift his leg up and guide it into the bath water. I tell him to hold onto the bath handle with his other hand and he cautiously and shakily lifts his other leg in. He won’t sit down though, so the bath is not happening.
‘Sit down , I will help you.’ I hook my arm under his arm pit and guide him downwards.
He sits.

‘I’m all wet now!’
‘Yes, well you are getting washed.’
Then onto  the trauma of the wash and the hair washing. I’m as quick as I can be because Bob wants to get out as soon as he gets in. I guide him out and dry him. He has no idea how to help. His limbs are heavy and leaden. I have to push his arms into the sleeves and lift his legs into jeans and shoes. All clean and fresh.

Next is the pills and shave. I’m knackered already and it’s only 8.45am.
First go with the pills and he spits them out. I pick them up and we have another go. ‘All swigged down.‘

Now the shave. But Bob is having none of it.
‘No, no no,’ he says
‘I’ll be quick. ‘
‘No. I hate it!’
‘Don’t be cross,’  I say and give him a kiss.
He melts. ‘Okay, just for you.’
So I get my way and he has his wet shave. I’m getting better at it, and quicker.

My lovely handsome husband. Aftershave Jo Malone, only the best!

Living with Alzheimers – A Carer’s Story by Chris Suich

Posted on by

Living-with-Alzheimers-Chris-Bob-Suich

In 2012 my husband, Bob, was diagnosed with Amnesia and we were told it could become Dementia. Three years later he was diagnosed as having vascular dementia. However, after two weeks in hospital in 2018 with severe anxiety linked to the condition, we finally saw a dementia specialist who diagnosed Alzheimers. Nothing could prepare us as a family for the devastating news – and that there was no cure. To see this dynamic and clever man become so dependent and scared of day to day things was devastating. My life now revolves around caring for the man I have been with for over 40 years.

I met Bob whilst having a gap year working on Cleethorpes Pier before starting a degree at Hull University. I was only 17, but we got on so well and shared so many interests that we became inseparable. We married a year later. Bob was theatre manager on the pier and went on to pursue a career in tourism and leisure, and I put my degree on hold to support him in his anti-social hours and bringing up our two boys, Joseph and Edward.

Whilst they were babies I enrolled in the Open University and after six years managed to gain a BA in English, History and Cultural Studies. After a year I started teaching full time at a local primary school. Bob’s career grew and soon he was in charge of tourism and leisure for East Lindsey District Council in Lincolnshire. We met many stars of show business such as Norman Wisdom, Ken Dodd, Joe Pasquale, Lulu, and Barbara Windsor, who sadly also suffers from Alzheimers.

Bob worked hard and had a knack for securing TV appearances. He would follow up every bit of publicity he could, including swimming in the sea in January to prove how clean the water was after gaining a Blue Badge award.

He was managing a huge budget, a very successful manager and well-liked by his many staff. We had a great life. but so much has changed since his diagnosis.

Life isn’t easy but we do manage to share lots of fun and laughter. In sharing our story, I hope to cast a little awareness of what it’s like to be a carer for someone living with dementia.

A typical Sunday in our house.

Bob has taken to waking up very early. Today it was 4.00 am.

‘Hello ‘ he says. ‘ Are we getting up yet?’

‘It’s early, go back to sleep,’ I say. ‘I’m not at school today.’

Then the restlessness starts. We manage a few more hours then I give in, get him up, bathed, hair washed all clean set of clothes, wet shaved, pills, hair combed and all the other small things it takes to get him ready for the day. It’s exhausting and the day’s barely begun. He looks smart and well though, so it’s worth it.

We listen to the news whilst we share our morning coffee, having a discussion of the likelihood of which Tory will become the next prime minister. Bob has me howling as he has a complaint about them all.

Then it’s out for Sunday lunch at a friend’s house. Bob eats a small plateful, but I have to chop it up and feed him as he never manages more than a few spoonfuls himself. He’ll say he’s finished but I can usually get more down him as he forgets what he’s said.

When we get home another friend calls in for a glass of wine. He sits with Bob and they enjoy a beer for an hour. Bob ‘loves him’ because he knows him and feels safe. This gives me a break as I have real problems keeping Bob occupied. He wants to do something all the time, but his concentration is nil and so I’m not able to get on with as much as I’d like.

I put ‘Babe’ on the TV for Bob while I mow the grass. He enjoys children’s films as the story is not difficult to follow. I try to dodge the showers and just manage it before the heavens open. When it stops our friend helps me dig some plants in and put the heavy green bin out for dustbin men.

Our friend leaves and we settle down on the sofa, side by side, to watch footie for a bit. If it goes to penalties I might just be able to escape to do the pack ups and the organisation for work tomorrow.

Then out comes the doodle book with his nice new pencil crayons. He lasts fifteen minutes but I am cajoling him the whole time.

Getting Bob to bed is a huge undertaking as by 9.00 pm he is tired and irritable. I start by getting him in his pjs. He complains about getting changed as he wants to go to bed in his clothes. I have to manoeuvre his arms and legs as he can’t do it himself and his arms are stiff as he no longer knows what to do to get undressed.

Then the teeth.

‘Oh, not that!’ he says.

He hates the sound of the motor on the electric toothbrush and I have to brush his teeth as he would never do them.

Then the pills.

‘Not them’ he says.

Bob is on a cocktail of tablets: one for his memory, one for anxiety and several others. Then we go downstairs for a glass of ‘something lovely’ – part of the deal for co-operating in the getting ready for bed routine. Bed by 10.00 -10.30pm and Bob goes out like a light.

Whereas I am laid awake thinking; thinking about how my life has changed, how Bob must feel so bewildered, and how I’m going to have the strength to start it all again tomorrow.

 

 

JANE CABLE REVIEWS: THE LAST DAY by CLAIRE DYER

Posted on by

 

This is a clever book on so many levels. Just as you are settling in with the characters Claire Dyer throws a curve ball which grips you and makes it impossible not to read on.

Vita, Boyd and Honey are not a love triangle. They can’t be; Vita got over Boyd years ago, but nevertheless it is a surreal situation for them all when Boyd and Honey need to move into Vita’s home in Albert Terrace. And of course they all have secrets – there have to be secrets. In fact there is only one character in book who doesn’t have one.

As days turn into weeks, and weeks turn into months, the new normality of life in Albert Terrace is punctured by glimpses of the past which tie the characters together, yet rip them apart. As time marches on towards the last day – which the reader knows has to come – secrets are revealed and slowly the jigsaw falls into place. Just one mystery remains: will the last day in fact be the first?

The Last Day is Claire Dyer’s first book for The Dome Press and she seems to have found the right home for her particular brand of character driven fiction. Dyer is also a poet and it shows; every word in this carefully constructed novel counts and has the feeling of being deliberately placed. Yet the genius is that this is still a smooth read which carries you to the Surrey small town world of the characters and keeps you there long after you’ve finished reading.

As the story takes off you forget about the writer’s skill and become immersed. You cease to notice that one character alone narrates in the first person, that the whole book is in the present tense. This is how it should be with great writing and Dyer, with her MA in Creative Writing, slips into the background as her story takes over.

Highly recommended.

The Last Day is published on 15th February 2018 by The Dome Press. Claire Dyer is one of four writers Frost’s Business of Books column is following this year. Look out for updates on the last Wednesday of every month.