Diary of a Care Worker – Autism Spectrum Disorder (ASD)

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As Care Workers, we are able to support so many amazing people, but working with Service Users with Autism Spectrum Disorder (ASD) is always a real privilege. It’s a chance to really get to know someone, their likes and dislikes, help with triggers and stimming (self-stimulatory) behaviours, and to play a positive role in their lives. 

However, much of what those of us who work with children and adults with ASD know, can be helpful to everyone – and we can all do ‘our bit’ to educate others. Here are some useful facts and tips about ASD, which affects more than 1 in 100 people in the UK.

What is Autism Spectrum Disorder?

Autism Spectrum Disorder is a developmental disability which can make it hard for those with the disorder to form relationships or express themselves. They may sometimes (but not always) have a learning disability. According to the NHS website, the following traits are common to many with Autism:

  • finding it hard to understand how other people think or feel
  • finding things like bright lights or loud noises overwhelming, stressful or uncomfortable
  • getting anxious or upset about unfamiliar situations and social events
  • taking longer to understand information
  • doing or thinking the same things over and over

If, as a Care Worker, you are providing support to someone with ASD, there are some things you can do to help build a positive working relationship during your visits:

Help to accommodate change

We might often have to make a quick assessment of a situation which can cause anxiety for someone with ASD, and it’s at times like this, that knowing them well can help.  For example, if a Service User is used to being able to ‘tidy up’ his favourite tins of soup when he goes shopping, restrictions like Covid make can make buying the weekly shop problematic. Managing a situation like this can be easier if you know what the person is likely to respond to positively, and taking time to introduce change, slowly, can help with a transition.

The small details matter!

As there will often be times when a Service User with ASD may have a different Care Worker coming in, no detail is ever too small to note. Anything from a lost or broken favourite item, or the introduction of a new daily activity can be easier for the person to handle when everyone is in the know.

Give people with ASD time to process

As with all of us, someone with ASD might have a lot of things going on in their mind when you speak to them.  This is why giving someone plenty of time to process and respond is vital.  It can be frustrating to be rushed – and more so, for someone with ASD.

Be methodical and structured with instruction 

Someone with ASD or Aspergers is likely to need clarity in instruction, and it can be frustrating for them when they don’t understand what you’re asking of them. Be clear and brief in your instructions or questions, avoiding conversational fillers that can dilute your message or confuse it.

Take things in your stride …

Those who work with, or live with, someone with ASD will know that there will often be challenging occasions! Don’t take offence when something is said that might be considered rude or aggressive.  In particular, people with ASD can often find social situations difficult, and your calm approach can help to lower their anxiety and to self-regulate.

Be adaptable

Being able to accommodate the needs of the person, for example, changing approach when something doesn’t work, can enable us to learn more about what works for someone.  Being flexible – and sometimes just accepting ‘not today’ – opens up possibilities for a better tomorrow.
It’s not always easy to get things right, but as with any relationship, there’s a little trial and error in there! Find out more about complex behaviours, and … why not share what you know with others? After all, disability awareness starts with each of us 🙂

Diary of a Careworker – Giving Hope

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When life gets tricky, it can be hard to imagine better times; even the best of us ‘tough cookies’ can soften if we’re treading in the mud for too long! Good health, a strong support network, and ongoing interests or responsibilities, like family or work, all help to motivate us to keep us pushing through hard times.

Inspiring action

But what if we don’t have these things in abundance? Isolation, poor health and scattered – or busy – families can often make it more difficult for older people to find the inner resilience to work through trying times.  And over the years, I’ve found that, as a care worker, fostering hope and inspiring action can be a critical part of what we do for those we care for, helping them to regain their confidence and belief that things can be better.

Instilling hope after illness

However, there’s more to it than simply assuring a client that ‘Things will be alright’ – as comforting as that can be. We need to find what inspires a person to be an active part of the solution. This is one of the key principles of intrinsic motivation.

One of my clients, Joe, a relatively young man in his sixties, had, after a second stroke, become less and less independent in his home. The problem was not that he couldn’t do things – he had simply resigned himself to the fact that there was nothing he could do about his paralysis, and quickly stopped trying.

Learned helplessness

Seligman talks of ‘learned helplessness’ – a state of believing that you can’t escape a negative event, and therefore accepting all that happens, without fighting to overcome or avoid it. Despite very real physical barriers that can be there, a lot of it is to do with the mindset that we adopt. The good news is, a mindset can be altered – to varying degrees of course – but with a little support, we can work towards overcoming that overbearing feeling that a situation is ‘hope-less’.

And hope is the key word here. There is always hope, and it is the catalyst to greater things. We just need to help those we support, find it.

Hope as an anchor

To believe that a situation is not as dark as it appears, we need to attach our negative feelings to something tangible that is positive – like anchoring a boat to a pier in a storm. For Joe, he saw this second stroke as an isolated and unsurmountable event.

But this was his second stroke. It was not isolated – and neither was it completely unsurmountable. However, time was of the essence, so I took some time over the next few visits to really get to grips with how Joe was feeling.

Finding the right motivators

Joe recalled that he had had his first stroke at a young age, and the devastating blow to his health had left him feeling very similar to how he felt now. A keen gardener, his frustration was deepened by losing the ability to spend time doing what he loved best. Quickly, his friends clubbed together to buy and install a raised bed for his garden, and a mixture of vegetable seeds to get started. However, the condition was that they would have a barbecue by late Summer, with his homegrown vegetables as part of the spread. 

This combination of instilled hope, genuine care – and a goal with which Joe could challenge himself, had been just enough to take him out of his state of learned helplessness, and to set to work. I thought I spotted a glimmer of recognition of the similarity between that and his current situation, as he talked about the resulting barbecue – with fresh tomatoes, potatoes and onions on offer – all grown by his own hand. I asked if he might consider doing something similar this year, with a few of the same friends; unsure, he replied he would consider it. 

Recognising limited beliefs

Hope is the catalyst for turning a negative situation around, but it needs action to make those changes happen. First we need to recognise that part of the problem is to do with our limiting beliefs. Knowing that things are not as hopeless as we believe them to be, helps us to get to the next step. And the next step is a goal, a challenge that will take us out of our ‘comfort zone’ and force us to recognise that do have an element of control over our lives after all.

Changing how we talk to ourselves

Everything that we achieve in spite of our situation is something to be proud of. However, when learned helplessness has gone on for some time, we can often keep reverting to the negative self-talk that we’ve become accustomed to; even when we do achieve, our negativity can chime in with comments like ‘It’s just a one-off’, ‘Probably won’t manage that again’ – cancelling out the success we should be acknowledging. By helping clients to become aware of this unhelpful thought process, we can encourage them to replace it with positive self-talk, like ‘Not bad! I’ll do that again later’.  But it’s also important to remember – and be reminded – of these wins. 

Recording the wins

I asked Joe to help me to keep track of his progress, by jotting down a quick note of things he managed to do that he had not thought possible. In actual fact, it was to serve as a journal, so that he would see, each day, a growing list of accomplishments to inspire him to keep going. 

The plan worked. The list grew longer, and broader, until one day, I came in, and he wasn’t there. 

Scribbled on his notebook, were the words ‘IN GARDEN’. And there he was, at his raised bed, trowel in hand, potting tomato seedlings once again.

For Joe, having combatted those feelings of helplessness with his achievements after the first stroke helped him to regain his independence and freedom. That said, every person is different, and situations vary in how much can be done. But the important thing to remember, I feel, is that there is always something that can be done to make things a little better. 

And that’s where we can make a real difference. 

Diary of a Careworker – Setting Boundaries

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We care. We want to make life a little brighter; a little easier for our clients, so we go the ‘extra mile’. But when is it a mile too far for us? Setting healthy boundaries is one of the most important lessons we can learn to prevent burnout and undue stress. 

‘A Mile too Far …’ 

I worked with a young man with lower-limb paralysis, and who had the most amazing positive approach to life. We got on well, and one day he asked me to be his ‘walk wingwoman’ for a fundraiser in support of a paraplegia charity. I felt, in all honesty, that this was perhaps beyond me, but I could see it was incredibly important to him; so I agreed. 

Soon after, we set about practising for the 8-mile walk, both taking turns to propel his chair. I found it hard. In fact, about halfway into our ‘training’, my knee began to ache. Carelessly, I ignored it, putting his excitement well before my slightly dicky knee.  

Some Sound Advice 

Perhaps predictably, about a week before the event, I woke up to find my knee swelled up like a bunch of misshapen grapes –  not pretty. I knew I was going to have to ‘bail out’. Feeling awful, I spoke to a colleague, who offered to take my place (she did these kind of things for fun:), but also gave me some sound advice, as an ‘over-giver’, which I share with new careworkers regularly. I’m paraphrasing, but here it is in a nutshell: 

  1. Healthy boundaries make better carers: Your health is at the heart of the good care you provide. Without it, nothing else works.
  1. Know why you’re over-giving:  Chronic over-givers may be doing so for different reasons: perhaps out of a need to be needed, or because we’re deflecting from our own worries by caring for others. We need to ensure that the ‘extra’ we’re doing is always coming from a healthy place.
  1. Selflessness is not in your job description! Ultimately, you are employed to support your client. Empathy and concern are a natural part of what you give as a careworker, but over-giving at the expense of your own wellbeing is not! 

I took up my colleague’s offer and her sound advice, realising that I should have declined at the outset; I needed to rethink my boundaries. My client was fine about it – he was just delighted that he would still have support on the day. 

… And he certainly did; with not one, but 3 ‘wingwomen’, all colleagues, walking along beside him and taking turns propelling his wheelchair to the finish line, where I was waiting with a high-five, a lumpy knee …and a lesson learned  

Healthy Boundaries make Better Carers

Yes, we want to do all that we can for those we support, but we do our best when we’re at our best. And keeping ourselves in check with clear healthy boundaries on what we can – and can’t do – helps us to continue doing just that. 

My colleague’s wise last words on the matter made me realise how little attention I had paid to my own wellbeing: “Caring is sharing”, she said, “but a sponsored walk with a gammy knee is just plain daft’.  Again, she was spot on. 

Diary of a Care Worker: Family Dynamics

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Parents know how to say the right things. And if there’s nothing that can be said, a cup of tea is often next up!

So it can be hard on the children of elderly or vulnerable parents in later life when things change. Families have spent a lifetime learning all the little quirks of their loved ones. They know their ‘tells’; when they’re in a good mood – and when to run for cover 🙂 

But medications, conditions and loss can change a person, their preferences and importantly, their needs. That’s tough enough for some. And then there’s us – the care workers – in the mix, too. Sometimes we’re considered ‘angels’ – other times we’re not! However, we learn to take it all in our stride – mostly … 

Mothers and Daughters – and Care Workers

I used to work with a lovely lady, Elsie, and we got on well. Having broken her leg, Elsie’s had her daughter come to stay with her for a few weeks. She had told me that her daughter was ‘a bit of a worrier’, and so I left it to her to share that she had been up a step ladder, trying to dust the lampshade when she fell. 

As soon as her daughter arrived, I understood what Elsie meant. 

‘She needs more pain medication – what on earth will paracetamol do? Are you in pain mum?” 

“No, I’m fine, darling” 

“She always says that”, her daughter said, protectively: “She needs more pain medication”. 

And so it went on, with “She likes both sides buttered.” and “She drinks coffee, not tea”. Elsie was cutting down on butter for her cholesterol and had stopped drinking coffee to avoid nightly trips to the loo, so these were choices she had made. However, I understood that her daughter probably felt insecure about a stranger looking after her mother, and did my best to reassure her. 

After a week of trying to strike a balance, though, it was getting quite tricky: 

“She does the crossword on the back of the Sunday paper – doesn’t she get one?” 

Possibly tired of the questions, Elsie fired back: “Here’s a clue. Four letters; stresses me out when someone makes a lot of it. Rhymes with ‘bus’.” 

I admit I gasped a little. But in an effort to relieve the tension, I pulled a pile of Sudoku books out from Elsie’s drawer. “Your eyesight’s not as sharp as it used to be, is it Elsie? – but you go through these Sudoku puzzles like there’s no tomorrow!”. 

I like to think Elsie’s daughter realised then, that we really were on top of things – as the rest of her stay seemed to go pretty smoothly.

Finding a happy medium 

It can be hard to get the balance right when your client’s personal wishes and those of their loved ones don’t align. My advice to anyone starting out as a care worker is not to take things personally, and to think about what’s going through the mind of the family member, which could be anything from guilt, to worry and frustration – or something completely unrelated. Many of us would be exactly the same. 

At the end of the day, we are there for our client’s wellbeing, and when family members are there, we do what we can to help make things go smoothly. Niggles are usually ironed out when families see that their loved ones are well taken care of, and that they can trust us to do our job well. But if not, we have our own team to guide us on how best to handle such situations. 

There will always be challenging moments, though. On the morning Elsie’s daughter left, I found a Post-it note stuck to the fridge.

“Please leave the Sudoku books on her bedside table. She can’t see them in a drawer!” 

At this point, my own mother’s favourite phrase came back to me – right before I’d hear the kettle being filled for a cuppa:

“Keep the heid, darling; keep the heid.” 

Diary of a Care Worker: Dementia and Confabulation

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I had just started out as a care worker, but the following story has stayed with me throughout the years as a warning never to make assumptions!

After a night of Googling, printing and cutting out pictures of a particular vintage car, I was quite pleased with myself. I had grabbed my new role as a personal care assistant with both hands, and was loving it. That day, I had found a nugget of new information from one of our lovely clients, James – a client with dementia; and I was excited to share the pictures with him.

Nurturing the Memory …

He had told me he used to own a very old vintage racing car, and described, with loving detail, the fenders on the side, the convertible roof, the outside spare wheel, and how he would pick up his girlfriend – later to be his wife – for a night out on the town. James was in his late 90’s and was lovingly referred to as a ‘cheeky chappie’ – always up for a little banter, but I hadn’t heard him speak of this car before, so I was naturally keen to nurture the memory.

I came in that morning, put the pictures in the photobook that a few of us had made as a visual aid, and made him a cup of tea. As he leafed through the pictures, he told me more stories of his adventures with this vintage vehicle, his wife of 60 years, and the fun times they had when they were courting.

Soon after, his wife returned from a grocery shop. She saw the photobook open on the table, displaying the pictures of this mean 1920’s dream machine.

“Why are these in here?”

I told her of our chat the day before, and how he had described days out with her on picnics, picking her up for nights in the dance hall, and driving through the countryside together in this wonderful car. 

She turned to me, with a hint of a wry smile.

“I think he’s talking about the car from Chitty Chitty Bang Bang, dear’.

Note to Self (and other care workers:)

Dementia can cause memories of people and places to become fuzzy, so the brain attempts to fill in gaps with relevant or similar memories. This can lead to false memories (confabulation), perhaps of well-learned facts or strong images from movies or books. It can be hard to strike a balance between ‘going along’ with what you suspect are false memories, and supporting them to find the ‘right memory’. But it’s all part of the learning curve as a care worker …with some steeper than others!

Strike a chord? Work and train with us! Social Care Alba is hiring.

Need Dementia support or to learn more visit Alzheimer Scotland or Dementia UK

Care Stories: Caring about the Present …and the Past

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Finding a pair of old army boots in a second-hand shop might not seem like a huge deal – but for a care worker who had been trying to boost the spirits of her elderly client, Bill – it was a game-changer.

As Bill’s dementia has progressed, Margaret had noticed that he had become increasingly depressed as his short-term memory was failing. She knew from photographs that he had served in the army, and when he was chatty, spoke fondly of it as a time when he felt he had purpose and a sense of respect.

On seeing the dusty black leather boots that Margaret had brought him, Bill started rummaging around in his kitchen drawer until he found a shoe brush and an old tin of polish. It was cracked and dried, but enough to make a start with.

That tiny gesture gave Bill a sense of pride as he buffed the boots ‘old school’ until they gleamed, and as he did so, talked about his time as a soldier, and later an architect, a husband and father (and, it turns out, a particularly talented Salsa dancer!)

Each time she came in after that, Margaret had plenty of chat to lift his spirits. The thing is, the boots were not the magic formula – her genuine interest in his wellbeing and compassionate care, were.

Care workers have to constantly be open to these opportunities to enrich the lives of those they support – and it’s not always about the ‘here and now’ or the tasks that they have on their list that day.

Sometimes, it’s about the ‘way back when’, or asking for opinions on things that matter, to remind our clients that their take on life is as important as it ever was.

Care Staff as Community ‘Connectors’

In the UK, we are not the best at building elderly inclusion into our communities – which is odd, when one remembers that our communities were built by those same people who now feel excluded. Our elderly are retired book-keepers, skilled tradespeople, doctors, writers, machinists – you and I – just a few decades in the future, but often disconnected from society – those with dementia, even more so.

Care staff provide part of that vital connection, ensuring that elderly people can feel connected again, perhaps also assisting them to lend their expertise in their communities through volunteering, or simply by enabling them to socialise with others.

Good care can keep a body healthy, but compassionate care can replenish the soul; that requires a special kind of person. And whilst care work is not for everyone, those who go into – and stay in – the profession for the difference they make to other people’s lives, are precisely the kind of carers that we will hope to have when we are a few decades down the line.