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

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.

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

 

‘ 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!

Living with Alzheimer’s – Bob has Covid by Chris Suich

chris-bob-suich-living-alzheimers

The phone rang loudly punctuating the silence in the house. My stomach lurched wondering if this was the phone call where I would have to jump in the car to get to Bob as quickly as I could. A solemn voice softly spoken, ‘Duty to inform . . . Bob has tested positive.’ How awful. So he’d got it anyway and I never got to comfort him because of this threat.
It has been 252 days since I hugged my husband Bob. I have never felt such a mix of emotions. I have been rendered utterly powerless.  I have tried everything I can to have some contact.

At the beginning of this nightmare I stood in the street shouting up to the first floor window whilst two carers walked with him towards it. Then we progressed to bringing him downstairs to the Reception area where he sat in the wheelchair looking out at me through a closed window. Then I moved him to a care home that didn’t charge nearly a thousand pounds extra third party top-up fee which, as a part-time teacher, I couldn’t afford.

It was July. There was now a chance to see him outside for thirty mins under a canopy but strictly 2 metres apart – and definitely no touching. But then the carer was OK to touch him without PPE – but not me. I asked why ? I was living on my own, avoiding shops, summer holidays (so off work) but my hands were not deemed safe to hold my husband’s hands. He stretched out for them. He’d shout ‘Chris, Chris,’ and try to stand up in his wheelchair to get to me. I had to watch  from 2 metres  away, getting more and more upset. I begged for another visit at the weekend. Thirty minutes once a week was not enough. I was granted another visit at the window on a Sunday.

I read everything I could about the government guidance and wondered why things were not changing. Our son, Joe, a Covid doctor felt if I saw Bob outside in PPE (and as a frontline worker I was permitted a test which was always negative), I could mitigate the risk.  That wasn’t accepted either.

Meanwhile, Bob’s health and well-being was impacted. He became very sleepy. I’d visit at 11.10 am but he was often still in bed asleep.  I changed the time to 2.10 pm but he often was sleepy then. He wasn’t responsive, barely knew what was happening, and couldn’t focus on me or follow a conversation. He looked clean and tidy but his personality had gone. Bob had disappeared he was a shell of himself.

I wrote letters, several citing new guidance, the breaking of laws such as the Equality Act or Human Rights Act – the right to a family life. My local MP wrote to the regional manager and I wrote to Helen Whately, Minister for Social Care. I wrote to author, Nicci Gerrard after reading her article in the Observer one Sunday evening. She invited me to join a closed group, John’s Campaign set up in her father’s name. The carers on there became a great source of information, comfort and support. I was phoned up by the BBC’s Alison Holt who was doing a piece on how this nightmare had affected me personally. My name had been put forward, would I do a story? Yes,  I certainly would, and I had some film to show my trauma when Bob would scratch the window or shout for me to come in. The article was shown on the main BBC news at 6pm and the 10 o’clock news. Bob would have been so proud of myself and our son, Joe.

Over the past few weeks there seems to be a sea change and up and down the country managers are trying to include visitors safely, in sanitised rooms, pods, using Perspex screens or even plastic overalls. But the way forward for visitors is fragmented; it is pretty much up to the care home . The new guidance is exactly that, guidance. I rang Public Health England asking if they had sent information regarding visiting protocols to Bob’s home. No, not at the moment, they should follow government guidance. So I wrote to the regional manager myself to ask that. It was then that I found out there was a Covid outbreak.
How did that happen? No visitors still. So all that time, when I wanted to see Bob and hold his hands in the summer –  when the R rate was low and I was told I was a risk, it didn’t matter anyway because he was destined to get it from within the home. I know it spreads like wild fire. PPE protocols must be rigorous.
It is now a waiting game. Can Bob get over this? I hope so but I am worried, he is fragile, has impaired health already and respiratory illness.
Joe knows this disease, he has been on Covid wards since this it started. It might start mild but it can turn very quickly.
I have been told I can see my husband at end of life. What a shame.  We have lost so much time and all in vain.

Christmas on the Home Front by Annie Clarke – Review

October 1942: As Christmas approaches, the evacuees decide a pantomime is just what the village of Massingham needs.

Viola loves her new job away from the factory, and hopes that her romance with the handsome Ralph might have a happy ending. Meanwhile, married life is proving tough for Fran and Davey as they are forced apart by war work and an unexpected arrival on her doorstep turns her world upside down.

Following her husband’s shock confession, Beth finally feels as though she’s regaining control of her life, that is until he turns up . . .

A lot can happen on the home front, but Christmas is a time for family and friends, and the factory girls will do everything they can to ensure this year’s celebration is one to remember.

Do you need a big hug?

Well, Christmas on the Home Front will wrap its arms about you and make you feel loved and cosy as you turn the pages.

I feel like I’ve been waiting rather impatiently for the latest in the Home Front saga – and it was only July – but it’s been a loooong year. I have wondered what Frances, Sarah and Beth have been up to since we last met – that time it was Wedding Bells and this time it is most definitely about the children – because Christmas is about the children, isn’t it? But it’s about a whole lot of other things too. Especially in Massingham.

Our lovely girls are still working at the munitions factory and their mams are still making proggy rugs to sell to Briddlestones for extra cash. The evacuees are settled at Massingham Hall and the community does what it can to help – and oh, lord, little Eva, what a character, she made me laugh so much. There’s the hustle and bustle of everyday life and a panto to prepare for. And this is no ordinary pantomime I can tell you!

All life is here, in Christmas on the Home Front, it teems from the pages, and the love, hope and dreams of the tight community of Massingham shines from every line.  The times are tough, the people more so and they all pull together to help each other. As always, with any Annie Clarke book there is warmth and compassion in bucketloads.

All of the Home Front books can be read without having read any of the other titles but why deprive yourself. You’ll miss out on so much. I was worrying about poor Ralph the whole way through. Would he be able to redeem himself, would his secret past be revealed. To find out this and so many other things get yourself a copy, a cuppa and a big fat slice of cake and snuggle up to discover for yourself.

I sat up until the wee hours reading and had to stop myself at 2am to save the last chapters for the following evening. I wanted to savour the richness of the ending and I was not disappointed. I closed the book feeling warm and satisfied, and with the feeling that there are good people in the world, you can find them everywhere. I know these are fictional characters but they reminded me of so many people I know and have known – and that’s the magic spell Annie Clarke casts.

I feel I could catch a train when all this is over and find my way along the streets of Massingham. I’d stay there a while, walk to the beck where so many happy memories were made, along to Massingham Hall which would surely be a five star hotel by now.  Perhaps the landscape would have changed but the people would still have the strength and heartiness of the characters in this book. Don’t miss out on a hug!

Christmas on the Home Front 

Published by Arrow £6.99

About Annie Clarke

Annie Clarke’s roots are dug deep into the North East. She draws inspiration from her mother, who was born in a County Durham pit village during the First World War, and went on to became a military nurse during World War Two. Annie and her husband now live a stone’s throw from the pit village where her mother was born. She has written frequently about the North East in novels which she hopes reflect her love and respect for the region’s lost mining communities. Annie has four adult children and four granddaughters, who fill her and her husband’s days with laughter, endlessly leading these two elders astray.

Living with Alzheimers – Will Bob know me tomorrow? by Chris Suich

I am anxious. Wondering what I will find at the home tomorrow. Will Bob know me again? My window visit is due at 2.10pm. It has changed from 11.10am because it was difficult as Bob was still sleepy. Sometimes, mostly on other days, he wasn’t out of bed. I was told this was person centred care if the patient chose or wanted to get up later they were able to. I tried to argue that he never stayed in bed till after 12 and he was up with me only 9 months ago at 6.30am and went to bed with me at 9pm without sleeping at all in the day. He slept all night at the home too so I was concerned about getting bed sores as that’s an awful lot of hours to spend laying down.

If he was brought to me in a wheelchair for a garden or cafe visit 2 m away (with a minder),  he was often falling asleep or in a kind of unfocused stupor where I couldn’t engage him. I asked if he was depressed or had given up the will to live. I had never seen him like this for so many visits week after week.

I was told by the nurse manager of the dementia unit it’s the onset of the disease, the way it progresses the way it is. But what if it wasn’t? What if it was the medication, the anti-psychotic drugs that he started in March. They are accumulative. Had he had the medication reviewed during covid? Had anyone outside the home seen him and this deterioration?

Two weeks ago he had a kind of spasm and his legs went rigid and he slid down the wheelchair. Luckily I was with my eldest son, a doctor. He was very concerned as he hadn’t seen his father in a while and was worried about his decline  and said he would be reviewed and observed if he was in hospital.

But he wasn’t, he was in a home and even the psychiatrist’s dementia nurse – who knew him since he was diagnosed – had tried to see him but was not allowed access.

So I rang the GP and asked her if anyone had actually seen him, not had a phone call or a Teams meeting but actually donned PPE and assessed him. No they hadn’t. I insisted there and then that a doctor visit him and advised them what I was most worried about. I said that I need to know if the medication was causing the sleeping and decline or the disease. I was really worried and concerned about the safeguarding aspect if medics were not getting access when the families requested it. The same day the duty nurse went in and later a GP – and a GP is scheduled in 2 weeks .

He is off all the dementia medication and he is a lot better. We went to see him 3 days ago and we cried with joy as he recognised us both and called our names out over and over . He was more alert and focused.

But it was a window visit as the home say he is not safe in a wheelchair, so we can’t see him face to face 2 m away . I think this rigidity has now subsided due to being taken off medications and the GP will confirm when she sees him next time.

This is such a blow because he cannot hear or see us very well at the window.  If it just a chair problem to overcome there must be one we can use just to get him out the door? It’s a good job I have a ‘ can do’ attitude as these problems seem insurmountable to some.

Nothing is insurmountable to me and whilst Bob is alive I will fight for him. It is an uphill battle.

What worries me more is how many others don’t have a ‘ me’ to ask questions and check well being and challenge accountability.

Tinsel – The Girls Who Invented Christmas by Sibéal Pounder

Tinsel

Here Come The Girls!

Have you ever noticed how the story of Christmas is all down the the men – even Rudolph is male.  And as for Mrs Christmas – she hardly gets a look in. Santa gets to fly out over the night sky on his sleigh but it’s Mrs Claus who’s put the tree up, done the shopping, wrapping and cooking while Santa gets all the fun and glory.

Well, get your elbows out ladies because here comes the delightful tale of Blanche Claus and her friend, Rinki to put the record straight.

Tinsel

It all started with a bright, shiny bauble – a gift that changed Blanche Claus’s life and set her on an adventure full of snow and sleigh rides, mince pie picnics and tinsel. She meets Rinki on the Corner where Christmas Trees are sold – and I really need to know where that magical place is! The descriptions are wonderful and the pace whisks you along, as if you too were gliding through the night sky.

Tinsel is a fresh take on how the legend of Santa Claus really came to be and it’s crammed full of lively characters that pop from the page. Little girls are going to love it. This big girl did too!

It’s a delightfully charming story of friendship and magic that sparkles and glitters. Young readers will be enchanted.

A funny,  festive read that will warm the heart. Too good to save until Christmas!

Tinsel – The Girls who Invented Christmas

Illustrated by Sarah Warburton

Published by Bloomsbury : 29th October 2020

RRP: Hardback £9.99

About Sibéal Pounder

Sibéal Pounder used to work for the Financial Times, where she researched the How To Spend It section and wrote the For Goodness’ Sake column – interviewing everyone from Veronica Etro to Vivienne Westwood. Now she writes about fabulous witches and feisty fairies in Witch Wars, her much loved series for Bloomsbury. Other writing credits include Vogue.com and fashion trend forecasting company WGSN, and she volunteers at the Media Trust, teaching kids who want to get into journalism. Sibéal studied History at St Andrews, Publishing at City, Quentin Tarantino films at Yale and recently completed the Faber Academy’s Writing for Children course. Sibéal’s first book, Witch Wars, was shortlisted for the Waterstones Children’s Book Prize 2016.

Published by Bloomsbury on the 29h October 2020

RRP: Hardback £9.99

Also by Sibéal Pounder

  

Moonlight Campervan by VTech – review by Miss Cali

V-tech-moonlight campervan

I was able to call on the expertise of Miss Cali to help with my review of the Moonlight Campervan by VTech. It’s aimed at ages 18 months to 5 and as she told me, she is 3 and therefore well qualified to assist. The only help needed was taking it from the box and applying the sheet of stickers that create a campfire, a bed, a fridge and a flip table that changes from barbecue to a table set for dinner. Once that was done she was off!

The door was opened, the two small chairs taken out and the exploring began. She allowed her brother, Huxley to play with the mum and dad figures but she had her hands firmly on baby. And she was the driver, no doubt about it.

She gave it a thorough testing inside and out – after all it is a camper van and she wanted to go travelling.

The three Toot Toot friends  included – Mum, Dad and Baby – are compatible with other Magic Point characters. When they are  in position on the Magic Point they sing and talk. There are four colour buttons on the side with small icons of the four seasons. It’s a learn as you play toy and VTech is a world leader in age-appropriate electronic learning products for children. They seem to have covered everything with the Moonlight Campervan.

Moonlight campervan interior

Best of all there’s a glitterball in the bus and when the lights are activated it sends rainbows inside the bus and onto the floor. Cali loved that and so did I. If it had played Cliff Richard singing Summer Holiday it would have stayed at my house!

v-tech moonlight campervan

There are small holes on the roof so that at bedtime lights are projected onto the ceiling. A really lovely effect. And there’s a volume switch so you can turn the sound down – the parents liked that part.

Day or night, inside or outside this is a fabulous toy for little ones. I was very impressed with it.

And the feature Cali liked the best ? The ladder on the back of the campervan! This kid knows what she likes and I’m not brave enough to argue with her.

RRP: £36.99

Available from Argos/Smyths Toys Superstores

 

 

Living with Alzheimers – His hand in mine by Chris Suich

his hand in mine by chris suich

I first remember Bob reaching for my hand when we worked together and we were the best of friends. We were stood together at the left hand side of the chairs in the Pier theatre. The lights had dipped and the show had just started. I don’t remember why it happened but I do remember thinking things would never be the same again. We had always got on well, laughed and joked around. He knew he wanted to marry me more or less instantly. It took me a little longer! In later life he always told me that and he remembers the moment he first clapped eyes on me. I was being interviewed for the job by someone else and he walked into the office to get something from a filing cabinet. But when he tentatively held my hand that evening , briefly, for just a few seconds I knew there was a new intimacy between us. A new connection. A connection that would last.

We have had a lifetime of holding hands.

Bob was always a gentleman. He was the type of man who opened car doors for me or carried my shopping or suitcases. We walked together in the countryside and in towns always holding hands!

I remember the long labour of our first baby and he stayed at the side of my bed holding my hand for hours trying his best to support and help me.

There is something reassuring and comforting when his hand is in mine. I miss it and so does he.

Latterly Bob suffered with severe anxiety and was prone to shaking episodes. I walked around the house with him holding his hand for hours until these shakes subdued. He wanted to hold my hand as he went to sleep and it helped him, soothed and comforted his fevered thoughts. I miss his hand in mine!

It is the saddest part of Bob being in care that we are not permitted to hold hands.

I have seen him in the flesh as it were, just 3 times in the garden. We are 6 months into this now.

The rules are 2 metres away, 30 minutes for once a week. It feels like we are criminals. Bob does not understand why I cannot touch him. He reaches for me. He tries to stand in his wheelchair. The care worker tries to tell him not to, as he might ‘tumble’. But he is valiantly trying to bear his weight and walk to me arms outstretched . Desperate for that contact. Me too. He tries several times and in the end he holds his hands like a handshake and kisses his own hands , the nearest he can get to kissing my hands. It is harrowing to watch. He sometimes says ‘it’s no good’ or he beckons me to him ‘come’ but I cannot comfort him. He sometimes tells me he loves me and my heart soars – he hasn’t forgotten me!

I have tried everything to persuade the powers that be to let me hold his hands. I have weekly covid 19 tests, all negative, I am willing to be wrapped in PPE , gloves, apron, and mask. I will sit out in the open where there is plenty of air circulating. I will do anything to give him this small comfort in his latter stages of Alzheimer’s. The July 2020 government guidance has changed. There is a realisation that Alzheimer and dementia patients need this type of contact. But it is a discretionary measure.

I know Covid 19 is here for a long time and we need to be safe. I don’t shop in supermarkets, I live on my own, I haven’t travelled very far. I have to keep myself safe as I have an 87 year old Mum to keep an eye on. I have taken advice and with the measures I am taking I would be mitigating any risk to give Covid 19 to Bob. or anyone else!

I wonder if I will ever hold his hands again. There must be so many who are suffering I have been told when he is dying I will be given that discretion. Am I supposed to be grateful for that?