A day in the life of a parent carer for a child with complex disabilities

Lowri, 27, lives in Hampshire with her partner Jack and their daughter Mia. Mia is three, and has a neurological condition called Rett syndrome. Her condition means that she is non-verbal, can’t move by herself and has to be fed using special equipment called a PEG tube. 

Lowri is Mia’s full-time carer. As we launch our Give Carers a Break campaign, she tells us exactly what this is like – and why it’s so important that carers like her get access to respite. 

Caring for someone with complex disabilities is hard work. It’s very demanding non-stop, and it takes a toll physically, mentally and emotionally. 

When Mia became nil-by-mouth, which meant she had to be tube-fed, I quit working so I could become her full-time carer. 

I love caring for Mia. She is non-verbal, but she does show off a lot of love. She really speaks through her eyes, and we do have a really special bond. We spend a lot of time cuddling.

Even though I love taking care of her, it doesn’t change the fact that it can be exhausting. 

I care for Mia 24 hours a day

From the moment she wakes up to the moment she goes to bed, I am caring for Mia.

Because she can only eat through her tube, I feed her every meal. 

I also dress her, and have to carry her around everywhere, because she can’t move by herself. 

“I would just love a few hours or days where I could relax, and not have to be so alert and constantly thinking about someone’s needs. It would really help me to unwind.”

I also have to keep on top of Mia’s medication. We have several specialist devices at home that I have to keep charged to help take care of Mia. 

She is incontinent and suffers with severe reflux, resulting in severe constant sickness.

That means I’m also washing clothing constantly throughout the day, and washing her bedding every single day.

Even simple tasks can take a lot longer when you’re caring for a child with complex disabilities.

For example, if I need to pop into the shop for milk, it might take 15 minutes longer than it would take another person. 

That’s because I’ve got to get Mia’s wheelchair out of the car, put it together, lift her into it, push her into the shop, and then get Mia and the folded chair back into the car.

Even at night and when Mia is at school, I have caring responsibilities

My caring responsibilities don’t end when Mia goes to bed. She often has insomnia. 

So I’ve always got to be alert at night, listening out for her. I do sleep, but it’s a lot of broken sleep.

I’m so used to the broken sleep that even when Mia sleeps through the night, I struggle to get a restful and full night’s sleep myself.

Mia goes to school for two days a week. While she’s there, my time is crammed full as I catch up on life admin.

It’s my time to do bits that I can’t do easily when I have Mia with me. That means doing the food shop, popping to the chemist, or stocking up on her feed.

The time goes so quickly, and before I know it I’ve got to pick her up again. 

There’s never been a time where I’ve just dropped Mia off at school and been able to relax by myself for the day.

Respite would give me the opportunity to have a proper rest

We’ve been offered a little respite care by our local authority. 

It’s one session of a few hours per month, at a centre a couple of hours’ drive away from us. 

By the time we’ve factored in the four-hour round trip to take Mia there and bring her back, it’s not really a break at all. 

What would be more helpful would be an overnight break. If Mia could have a couple of nights away, with someone that can care for her properly, I could spend those nights just having full nights’ sleep. 

I would just love a few hours or days where I could relax, and not have to be so alert and constantly thinking about someone’s needs. It would really help me to unwind.

I think every person would need support if they were caring for someone, especially 24/7. You do need a break. You do need some sort of sanity.

And the only way you get sanity is by having support and respite.

While waiting for support or respite, I’ve just got to get on with it, and make Mia the happiest I can, and give her the best care possible.