10 bizarre experiences with carers

This updated article from our archives “10 Bizarre Experiences with Carers” shares personal anecdotes highlighting the unexpected and often humorous challenges faced when working with carers. These stories shed light on misunderstandings and misconceptions about disability, offering a candid perspective on the interactions between disabled people and their carers.

If you’re disabled, chances are you’ve spent some time with carers, and maybe even met a few oddballs along the way! Dive into the quirky tales from Emma Purcell’s blog where she shares her unusual encounters with carers over the years.

According to a 2023 report by the UK Care Quality Commission, 20% of care services require improvement in disability awareness training.

Read on to see whether any of them ring true for you, and leave a comment at the bottom to tell us yours. We suspect all of you have a story to tell!

As I use a wheelchair to get around and am partially sighted, I rely on care 24/7. Up until the age of 14, I was always cared for by my parents. Then, when I started at school and then moved on to college, I used trained carers that I employed.

Throughout my time at university and to the present day, I’ve used a combination of agencies and hired PAs.

The majority of the time carers are perceived in two ways:

1. kind, nurturing, patient, friendly and selfless people, or;
2. dangerous, abusive and untrustworthy people who commit crimes against staff and clients and end up in prison.

But for me, and possibly many others, there is a third group – those who simply have no common sense and are just plain stupid at times! They also often lack a basic understanding of disabilities.

Here is a selection of some of the disgraceful, irritating, annoying, ridiculous and amusing experiences I have had with carers over the past 10 years. Please note that, as much as I would love to name and shame them, all carers are anonymous.

1. Obviously, being disabled stops me from drinking alcohol

Back at university, I was sitting in the canteen with my carer discussing plans for the weekend. I mentioned going to the pub with friends and the carer’s reaction was: “I didn’t know disabled people drink alcohol.”

Ok, maybe some people can’t because of their medication or condition. But it doesn’t apply to all disabled people. We’re people too. For me, without the booze, disabled adulthood would suck! How discriminating but funny.

2. Apparently, I look like a school girl

In 2016 I graduated from university and was just starting my career. A new carer, around college age, had come to visit my flat for evening care.

The first thing she asked me was: “Have you been to school today?” My response: “No I’m 23!” Awkward!

3. Stop singing, it’s 1AM!

One night I was reading my audiobook in bed when I heard the distant sound of singing. I initially thought it was someone drunk walking down the street. It sounded a bit like a cat being strangled!

A few minutes passed and the noise continued and got much louder. I then realised it was my carer singing (very badly) in her bedroom. It was coming up to 1am, so I buzzed for her to ask her to stop. But she couldn’t hear me.

It got so loud that I think my pet rabbit and neighbours could hear it. I eventually got her attention half an hour later and she wouldn’t acknowledge why I was calling her. No courtesy!

4. Ewww, why is my foot wet?

I once got into bed to discover that my bed sheet was still wet after the carer spilt my catheter bag that morning and never considered to change the bed sheet. How disgusting!

5. When a penis cushion is all they understand

Yes, this one looks insane, I know. But trust me, this is funny.

I was going to bed one evening and putting together my sleep ‘system’ – knee block, brackets, cushions etc. I directed the carer to get my round, cylinder, sausage-shaped cushion, but they couldn’t understand.

Nothing was working, so I had to be creative. All I could think of was: “Get the penis shaped cushion.” This time it worked – hilarious!

6. I clearly have diseased feet

In my boarding house at college, I buzzed for a carer to change my slippers and put shoes on. Instead of just going to get the shoes, she went into the bathroom to put gloves on first. Are my feet really that smelly?!

7. When were you going to tell me that the door is broken?

I had been living with one carer for over a week and was scheduled to go for a festival with friends, leaving the carer at my house over the weekend.

My friend came to help me pack, and when she walked into the spare room to collect my portable hoist, she discovered the bedroom door was coming off its hinges. The carer knew it was broken but never bothered to tell me! Unbelievable!

8. Disabled people do laundry differently, don’t they?

One morning, the young carer with me asked a random very question: “Where do you do your washing?” My response: “In the washing machine.”

She had been in my home four times and had seen the washing machine in my kitchen. It was laughable! I felt like I should be helping her out, not the other way around!

9. The bed remote?

One evening I got into bed and asked the carer to pass me the remote to move the bed so that I could sit up. She couldn’t understand me at all. In the end, had to phone my friend at 11pm to rescue me. Absolutely ridiculous!

10. All disabled people can only manage tiny sandwiches

For lunch, I asked for a sandwich. A simple request – or so I thought! Not only did I have to direct them on how to make a sandwich, but when asked if I needed it cut, I said yes into quarters.

It came back with 12 bite-size pieces. I was confused and amused, to say the least! Not all disabled people can only eat small pieces!

By Emma Purcell

Understanding the Importance of Disability Awareness for Carers

Effective care extends beyond physical assistance; it requires a deep understanding of the unique needs and experiences of disabled people. To enhance the quality of support, carers should:

• • Engage in comprehensive disability awareness training to better understand various disabilities and appropriate care strategies.
  • Foster open communication by actively listening to the preferences and concerns of those they support, ensuring personalized and respectful care.
  • Challenge personal biases and misconceptions about disability to prevent discriminatory attitudes and actions.

Tips for Building Positive Relationships with Carers

Developing a strong, respectful bond with your carer can greatly improve the care experience for both parties. Here are some practical tips:

• • • Communicate openly: Share your preferences, routines, and concerns clearly to ensure your carer understands your needs.
    • Set boundaries: Establish what is acceptable and what is not to create a respectful and professional dynamic.
    • Express appreciation: Acknowledge your carer’s efforts with kind words or gestures to foster goodwill and motivation.
    • Encourage feedback: Ask your carer for their input on care routines or suggestions to improve the experience.
    • Be patient: Building a positive relationship takes time. Approach any conflicts calmly and seek solutions together.
    • Stay informed about disability rights and advocacy to support the autonomy and dignity of disabled individuals.
    •  

By focusing on mutual respect and clear communication, you can create a positive and productive relationship with your carer.

You can see Emma’s full list of 20 nutty experiences on her Rock For Disability blog.

Have you had any weird experiences with carers? Let our community of readers know by leaving your comments below, messaging us on Facebook or tweeting us @DHorizons.

More on Disability Horizons…

• 10 things to avoid when meeting a disabled person
• 5 practical and stylish stocking fillers for someone disabled
• 8 disability rights activists changing the world for disabled people

Originally posted on 10/12/2018 @ 12:10 am