Tag Archives: Bob Suich

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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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.

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.

Living with Alzheimers – Bob and Barbara Windsor by Chris Suich

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

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

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

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

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

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

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

The thunder and lightening roared on.

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

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

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

Bless them both.

Living with Alzheimers – Waving from the Road by Chris Suich

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Waving from the Road

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

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

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

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

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

It was a different kind of torture.

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

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

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

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

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new challenge for 2020 Bob Suich Chris Suich

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

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

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

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

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

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

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

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

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

Living with Alzheimers – A Typical Day by Chris Suich

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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!