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In this series, carers share their stories, experiences and what they have learned about caring and wellbeing.  Here we share what you have to say about caring – the highs and lows, the challenges and the rewards.

As a carer, you are the expert in your own life. If you would like to share your experiences and add your voice to this series please get in touch at This email address is being protected from spambots. You need JavaScript enabled to view it.. You can share your story and experiences here on the website – you could write a blog, chat with one of our team or record a few words on video as an example. You can also contribute to our research as a case study, or by sharing your experiences with the media.


Who Needs Respite? - by an anonymous carer

The carer who shares her experiences here cares for two children. As the new school year has gotten underway she asks - is term-time really the chance for caring respite many assume it is?


Anon story 1

Children and young people returned to school or college in September – ‘Time for respite’ they say. 

I wish that was true!

Professionals like Social Workers and others we have in our families lives only see our life from their perspective and their own experiences and maybe other cases they have dealt with. The reality can be somewhat different as I can illustrate with an overview of our September. As you can see there was not much time for respite.

Even before school starts, we have meetings with school for our child ‘DB’ for transition with the new teacher, TA and SENCo, as well as the taxi company for our other child ‘DG’ to meet the new driver and talk about the new route etc.

Then BOOM, it’s the 6 September and they both return to school and college – here is the long-awaited respite (me time) I’ve been promised!

Sadly, respite in September didn’t quite materialise for me and I’m sure many other parent carers had similar experiences.  

There have been medical appointments in person and virtually; one was a mammoth 2.5 hour online long-awaited ADHD assessment for DG. Counting the lead up to getting on the pathway it’s been four years but now we know for sure, severe ADHD but not one teacher in four schools noticed it. So, on top of the relief at the diagnosis is the stress of having waited for so long and frustration it was not noticed sooner.

Since that meeting there was a second meeting, again online, to discuss ADHD medication and the options available. Of course, the next wait is now on to be seen for medication and guess what, yes, DG’s name has been added to another list.  In addition, DB had an appointment with his psychiatrist and a review of the medication.  Separately, DB attended the hospital as a day patient for a series of tests.

At the same time, all the clubs are back on so both DB and DG have been attending football training and matches, gymnastics, ballet, trampolining, climbing and swimming.

We’ve attended organised events too on our weekends as well as regular commitments and my husband had training one weekend for his voluntary work.

Despite the transition meeting before school began, unsurprisingly, there were some teething problems which resulted in a few more emails and another meeting with everyone including the specialist teacher this time.  Hopefully, all the wrinkles have been ironed out and things will go more smoothly now.

anon story 2

Another major blip occurred with DG’s transport to college. Our Local Authority decided that DG can only have taxis at 9am to go into College and at 4pm from College to home.  Now, what teenager, especially one with social anxiety, is prepared to travel to College two hours early twice a week and on another day hang around for a couple of hours at the end of the day before coming home?  Frantic phone calls and emails requesting adjustments to suit our DG’s timetable.  Then we get a letter saying our request has been refused. We decided not to give up and appealed!  Thankfully, after two weeks of sorting out lifts ourselves, we get the decision reversed and transport will be provided to suit DG’s timetable.

Amongst all these commitments we had to organise a replacement boiler and had meetings with the company to plan the work and even more disappointing that they arranged four dates to attend and do the work and four times they let us down. Four times of emptying the cupboards and clearing the busy diary to be available.  Let’s hope this work will be completed in October as that month isn’t too busy yet!

I’ve managed to attend several online training events for ADHD, ASD and sensory needs.  I’ve been to yoga too and for a few walks to try and keep some balance in my life.

We’ve returned to Sunday roasts as they are a family favourite. 

September has gone in a flash – there were a lot of appointments and training. A carers life is full of appointments and training and researching.  Meeting teachers, phoning about this, that and the other.  I sometimes wonder how we fit it all in but we do as that is what we need to do and we will do it all again next month and the one after!

Who needs respite?!


Carers Stories 800 x 150 px

 


Fiona's Story

Fiona cared for both her mother and father for a number of years. After her mother passed away she became her father’s main carer when he was diagnosed with Dementia. Fiona talked to us about her caring experiences and the advice she has to offer to people who are or will become carers.


How has your caring role developed over the years?

I’ve always been close to my Mum and Dad and I’ve always helped them. My mum got ill with Ulcerative Colitis and I just gradually helped. As mum got worse, she got a serious brain disease and dementia so I ended up just moving to the next level of caring.

I was working full-time and overtime. It impacted my life - I used to get called out for all hours of the day and night to help, my mum was rushed into hospital numerous times, and we would end up sitting in the hospital for hours and hours. 

After mum died, dad and I spoke and he said he was not going to sit in the house and mope around so we decided we were going to go out and have days out. It wasn’t until November he had some mini-strokes and then the Dementia came in gradually. You just couldn’t see it, but I noticed things like he wasn’t eating because he’d forgotten how to use the microwave. I kind of slipped into the caring role – but it was so gradual I can’t really pinpoint when it got to be more and more.

Was there any point you remember thinking ‘I’m a carer’?

I think it was probably a couple of years after mum died that I suddenly realised – when we got my dad diagnosed with Dementia. I just went into that role, because again I wasn’t just going to walk away and leave hm, I couldn’t, so I just gradually went into the role. I didn’t realise just how hard it was going to get. Caring for dad I had no idea how it was going to progress because again there was no sort of help offered to me or given to me. But then I discovered a Facebook Dementia group and it was a godsend it really was.

What worked for you when it came to outside support?

A couple of years before my dad died, I actually went to Cruise bereavement services and said I needed to see somebody because I’m losing my dad now. After some discussion they let me see a lady who really helped me. My friends are just amazing. People need to go out and get as much support as possible. There is a Dementia helpline that’s 24 hours – people need to know about these sorts of services are available.

(please click here for the Wales Dementia Helpline)

Fiona McCrea and father 3

What were the biggest emotional demands of caring and how did you cope with that?

There were times – because I always try to do everything myself and am not very good at accepting help - at one point when I was putting him to bed one night and felt resentful. It really does take a toll on your mental health, so you’ve got to have your support.

I would go for massages, go out to my local café who have been so supportive. During lockdown everything was taken away from me, so if it hadn’t been for my friends, I don’t know what would have happened. Every carer needs to have some me time, even if it’s just to sit in the garden, you’ve got to. They are more important in some ways than the person they care for because of they go down, who is going to care? Carers are so important, and it’s about valuing yourself and knowing you’re important too. So, carers have to know they are important, and they have got to look after themselves.

Are there any high or low points that really stand out to you?

Low points for me were with Dementia you go along and then down and go along and down and every time my dad dropped and the situation changed I found it incredibly difficult to adapt to that. It would take me weeks to adapt – that was the most challenging thing, coping with the fact that he had gone downhill and was not going to get any better.

Memorable moments for me – I would advise, and I can’t remember where I got this idea from, but I got the idea to do memory making. While my dad was still able to go out, we would go out for days because I live in North Wales and it’s just stunning.

So, we would go to our favourite places and I’d always take a selfie of him and me. Those memories now pop up on my Facebook, I’ve got them in printed photos and on my iPad. So, memory-making. And the little moments where my dad was lucid, they always made me smile – especially as he often lost all sense of propriety!

Fiona McCrear and father 2

When it comes to special moments, treasure them because they get fewer, memory-make when you can.

What is your advice for carers starting on their caring journey?

When you’re caring for anyone – whether it’s a child, your wife your husband, your parents you need to get that support in as soon as you can. As soon as you realise you’re going to be a carer and things may get worse, or caring may be long term, you need to find somewhere to get as much support as possible.

If you have to badger your doctor, your healthcare visitor – anybody, don’t be afraid to ring people and say, “I need something”, not “I want it; I need it.”

Get that help and support in the minute you realise because I didn’t, I didn’t know how to. Get in there and sometimes you have to do your own research you have to go on the computer Google it and ask people – get in there and sort the support out now because you are going to need it.

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