Tag Archives: Living with Alzheimers

Living with Alzheimers – The Christmas Market by Chris Suich

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

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

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

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

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

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

Living with Alzheimers – A Typical Day by Chris Suich

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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!

Living with Alzheimers – The Day Bob Got Lost by Chris Suich

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Living with Alzheimers the day bob got lost

It was a glorious Autumn day. The leaves were just turning into swathes of gold and red and the sky was the brightest clearest blue. Not a cloud in the sky, great for walking and a ‘feeling good to be alive day’. Bob at this time enjoyed walking in the countryside. Indeed he had even joined the ‘Ramblers’ and joined in with a group to explore the local countryside without me, when I was at work.On this particular day I had a hair appointment which was near to  a local beauty spot, Hubbard’s Hills.
‘I’ll come with you’ he exclaimed, ‘I can walk around Hubbard’s Hills whilst you have your hair done.’
‘Well take your little Nokia so I can let you know when I’m done,’ I replied. (Thank God I’d thought of that phone!)
We drove together to the hairdressers and Bob went off in one direction and I rushed off to the hairdressers.
We arranged to meet up at the car, or ring each other whoever was finished first. It was me who rang Bob to find out where he was. I’d been waiting in the car for about half an hour  – that was just over two hours since I had left him.

‘Where are you?’ I asked him slightly irritated.
‘I’m on my way back’ he said.
‘Ok, I’m in the car waiting for you. ‘
Another 30 mins passed and I thought I’ll go and look for him coming along the road near to Hubbard’s Hills. I’ll spot him I thought, as the road is straight and I’ll easily see him coming.
No sign.
I rang him again, slightly anxious. ‘Where are you?’
‘I don’t know.’
I asked him what he meant, and if he could see any buildings, or if he could see the church spire from where he was.
‘No’ he said, ‘I can’t see anything just miles of fields.’
I knew I had to stay calm because Bob was in a panic. I told him to see if he could see anyone to ask. He explained that there was a man in a tractor in the field that he could see. He was beginning to walk through the field to get to him.After a few minutes the farmer was put on the phone to me. He told me the name of the hamlet which I didn’t really know and told me that Bob had got himself lost. He pointed him back on the road to home and I said I would drive to get him.
In hindsight I should have said keep him there and I will come to you, because Bob carried on walking and when I got to the hamlet he was nowhere in sight.
It was 6 hours later and I had driven around searching for Bob on every little road leading back to our town I could think of. I decided to go home and ring the police as it was getting dark. Panic was starting to envelop every part of me.
I had just picked up the phone when a 4×4 roared into the drive. Bob had been picked up by an immensely kind man and brought home. He was cold and muddy and very sorry for himself but none the worse for his adventure. He was able to recite his address and let the man know where he lived. (Even now his address and date of birth are imprinted on his mind).
I knew he was upset so I didn’t get cross to add to his trauma but simply said ‘ It’s alright Bob you’re home now and I’ve got some lovely warm soup and a nice warm fire.’
To the kind stranger I simply said. ‘Thank you so much, I’ve been out of my mind.’ I pressed a bottle of our best red wine into his hands and told him to have a drink on us.
It was after this incident that I found out about The Herbert Protocol, a scheme where you can fill in a form and give it to the local police with a picture in case a loved one like Bob ever goes missing again. It can save vital time in this sort of emergency.

Later I asked Bob how he had managed to get lost and he said matter of factly, ‘I forgot to turn round and head back.’

He was walking further and further away without knowing!
And that’s when I realised he wasn’t safe to go off walking in the countryside on his own.

 

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

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

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

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

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

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

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

A typical Sunday in our house.

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

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

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

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

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

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

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

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

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

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

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

Then the teeth.

‘Oh, not that!’ he says.

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

Then the pills.

‘Not them’ he says.

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

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