Tag Archives: Living with Alzheimers

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.

 

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

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The-dementia-cafe

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘It is 3rd December.’

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

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

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

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

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

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

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

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

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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.