From Donna Giles

6.15am – up and into the day, after getting myself up and ready I am straight into the
bathroom (7.45 am) greeting Cerys, who Andre has assisted out of bed, and starting to get her ready for the day. 

7 am – Cerys’ carers arrive and I hand over to them so that I can go downstairs and ensure that the bowl of crisps is ready for her to choose her snack, and her travel mug for a cup of tea at college is available on the table ready to go into her bag. I also make sure 2 small cups with straws and Cerys’ medication for her reflux and epilepsy are waiting for the Carers to use. The rule is that only one person can handle and give medication so I can’t do any more.

I then sit down to take my own medication and have my breakfast with Andre – these 10 – 15 minutes can often be the only chance we get to talk until we get into bed, exhausted at night. It doesn’t lend itself to the conversations we often feel the need to have. Andre then goes upstairs to get Nathan out of bed before disappearing off to work. Today we are borrowing his car, but he has been lucky enough to secure a lift to work. Sometimes he has to walk the nearly 3 miles if he doesn’t have the car.
Unusually, today Nathan comes downstairs to have assistance with personal care and
breakfast before his PA comes in to help him with other aspects of personal care and getting dressed. Today we have to get out a lot earlier than we normally would to enable me to get to the GPs for my INR blood test before heading to a local college to assist with the Social Work degree course 1 St year role plays. Nathan and I discuss how sorry we feel for the students because the course is being closed so they need to transfer to a different university to continue. We both appreciate that it isn’t that easy to just continue elsewhere and really don’t feel that they have been treated fairly.
When he comes in, Nathan’s PA gives him his medication and then they disappear to get
Nathan ready. Meanwhile Cerys has had her medication, eaten breakfast and drunk her cup of tea and is off to college. The Carers transport her to college as after Covid both national and local Government failed families like ours that were still shielding by not putting in placeany measures that would allow us to keep our risk as low as possible.
The ‘cat that’s not our cat’ but appears to have adopted us’ turns up – luckily, he only wants a drink of water and is soon off again because if he had settled down for a nap we wouldhave had to disturb him eventually.
I quickly write a ‘to-do’ list before attempting to style my hair. It doesn’t look too bad, I
think… However, I don’t bother with makeup because I don’t have time. I also try to
convince myself it will give a more authentic look to my role as a Carer. This is how I look
most of the time!

9.30 am – Time to jump in the car to get to my GPs for my appointment. As we are using
Andre’s car that isn’t a WAV, but does have swing out seats, we need to ensure that we
bring out the ‘stand and turn’ with us so we can transfer Nathan into the car seat. His PA then pops both it and Nathan’s manual chair into the car. Good job it’s an estate car! We’d love to have 2 WAVs but the downpayments are expensive on them, particularly if we want to try to get one that takes 2 wheelchairs together. Ahh we can dream!

9.45 am – During my INR blood test at the GPs, I ask the nurse for some advice regarding my Father-in-Law.

10.00 am – Then it’s a quick dash to the local college where I assist Nathan to transfer to his wheelchair so he can go into the local town.
As I wait for the tutor to fetch me to go up to the classroom I try to remember the scenario. I will be playing Jennifer, a Carer to her 15-year-old son (not too dissimilar to my own experience, however I will be adding in more detail).
While I am waiting, I get a phone call from Cerys’ college to say her powerchair footplate
has fallen off! The college would like me to transport over her manual chair to use, however the college is 40 minutes away. They have spoken to the company that is responsible for fixing wheelchairs (commissioned by the local wheelchair service) but they can’t fit her in until Friday! The WAV is now at home and the Carers will have left – in any case they don’t have a key to let themselves in so would have to collect one from me at the college before going back to our house. I would also have to ensure that the agency management were aware I had given special permission for them to enter our property when no one is there…

My husband is at work and doesn’t have a car because we have it… I am about to start work and I’m the only EBE here so can’t leave and let all the students down… How do I get the spare chair to my daughter? I explain my position to the man from the college, who is understanding, but obviously concerned. I leave the problem with him, promising to be back in touch when I have figured out how to get the wheelchair to the college.

10 am – Tutor sends message to the reception to say she is running late but will be with me shortly so I use the time to quickly check for any other messages on my phone.

10.30 am – The Tutor comes to collect me and we walk across to the room where the role
plays will take place, catching up as we walk.

11am – First role play begins. The student is coming to chat and gather information about my character so a decision can be made about whether my character is entitled to a carer’s assessment and extra support. Halfway through the interview my phone rings! I answer a) because that makes the role play authentic and b) It might be an emergency with my father- in-law, my mum, my daughter, my son… It turns out to be my daughter’s Tutor saying the company who fixes wheelchairs was actually onsite looking at another young person’s wheelchair, so was asked to look at hers and fixed it! Yay! Panic over! Yay! For the person who asked the engineer to take a look and Yay! For the engineer who fixed it!

2.30 pm – role plays and feedback briefings – the Tutor and I discuss how we feel each
individual student has responded to the task, what feedback we would give them and
whether they have passed – are done and Nathan is waiting in reception for us to travel
back home together. Another transfer and we are off!

3 pm – settled at home, having had a piece of toast, a pear and a cup of tea! Normally I
would try to eat a better lunch but there just isn’t time today.
I know there are emails I need to reply to regarding care rotas and I search for any
information coming in around my daughter’s recent CHC assessment or social care review, but there is nothing. Disappointing and anxiety inducing as she leaves college in July and I need to know how much support she will get when she is home full time.
Nathan needs assistance to transfer into his supportive chair so that he can get into his
standing frame. Although Nathan has 1:1 care, he needs 2:1 for all transfers.
I also phone my mum to check that she is doing ok today. My Dad died of end stage
Alzheimer’s a few months ago, and, until he was admitted to hospital for the final time, she was his primary carer. The lessons I learnt from navigating the social care system with my 2 children certainly came in useful when helping my mum to navigate the elderly care system.

4 pm – Cerys arrives home from college and I spend time having a cup of tea with her and her carers. I like to make sure she gets some attention and the opportunity to tell me about her day. Obviously today there is lots for her to tell me! Cerys requires 2:1 care as her epilepsy is unstable and a seizure can occur with no warning. She generally has one once every 3 – 4 months which doesn’t sound a lot but not knowing when they will occur does mean you are always on alert.

5 pm – I start to make tea. Today I have time to cook from scratch but that isn’t always
possible. Sometimes a microwave meal is as good as it gets!
As I cook, I can hear the alerts on my phone informing me that my father-in-law’s carer has arrived to do his tea. I know because the camera in his hallway is picking up her movements.
The Carers are all informed it is there and was installed so we could be alerted if he fell
down the stairs or in the hallway. He is 89 and getting frailer so we are doing all we can to try to keep him safe.
I suddenly realise that the washing is still in the machine as I didn’t have time to get it out this morning, and completely forgot when I returned! So, whilst the tea (spaghetti
bolognese, in case you’re wondering) is simmering I get it out and put it on the dryer.

6.15 pm – Andre arrives home and we sit down to eat. We try to spend as many nights of
the week as possible eating together so that we can all catch up with each other’s news.

7 pm – Cerys goes upstairs with her carers for a shower. Andre decides to carry on tidying up the garden now the nicer weather and lighter nights are here. He informs me that, if the weather continues, he will spend Friday afternoon at his dad’s tidying up his garden as it hasn’t been touched for months. Nathan disappears into the lounge to watch TV and I look at the pile of ironing, knowing I should start to tackle it, but I’m just too tired. Over the years, I have been taught the consequences of ignoring my own cardiac condition and pushing myself too hard, so I decide to sit down with my book instead. Still feel guilty though!

10.30 pm – by the time that Cerys’ has finished her shower, had a cup of tea and been
assisted to bed it is just after 10 pm, so Andre, Nathan and myself finish watching the news before Nathan goes up. Andre and I tidy up and load the dishwasher before following him. I go straight to bed whilst Andre assists Nathan with getting undressed, into his pajamas, and into bed.

11 pm – finally we are both in bed, exhausted, but spend a few moments running through what needs to happen the next day before falling asleep.
This is a run down of just one day in MY caring life. Not every day is this busy, but every day is full of juggling and being aware of everyone’s needs and whether or not those needs are being met.
There are thousands of carers, up and down the country, who are trying to juggle, trying to keep their heads above water and not drown in the overwhelming responsibility of caring for another; whether it be your child, parent, sibling or even a neighbour, anyone who needs extra support from another. They all deserve support and recognition.