More than a parent

In the first dedicated study of suicide risk in parents caring for a disabled child, it was found that 41% of parent carers had thought about suicide; but less than half had ever told anyone or sought help.

The lived experience of parent carers

Inspired by the ground-breaking research, this short film offers a glimpse into the lives of parents caring for children with disabilities and long-term illnesses. It captures their everyday experiences, highlighting not only the boundless love they have for their children, but also the ongoing battles they face to get support and ensure their children can live the best possible lives.

Transcript

0:24 I used to think I was just,

0:26 tired.

0:29 Not, have a nap

0:31 kind of tired.

0:34 It was a tired that would

0:36 seep into your bones and stay.

0:39 I would tell myself,

0:41 work harder.

0:42 Just work harder.

0:44 Love deeper.

0:46 Just stay calm.

0:51 Because it will settle.

0:59 They often say,

1:01 “you’re amazing, don’t know how you do it.”

1:04 And I’ll just,

1:05 smile.

1:06 Because it’s what they expect.

1:09 But the truth is,

1:12 I’ve been angry.

1:15 Why does it have to be like this?

1:18 Every single time I ask for help,

1:20 I am made to quantify my child’s struggle.

1:25 Never do they think to ask me how,

1:28 how funny or kind they are.

1:31 They even forget my name.

1:34 They forget my name but they’ll remember my reference number?

1:36 And yet, I feel ashamed.

1:40 Ashamed for even having these feelings.

1:45 It’s like the only thing that I’m allowed to be

1:52 is strong.

2:01 You didn’t ask for any of this.

2:09 But maybe it’s my fault.

2:12 Somehow.

2:36 I’m tired.

2:39 So tired.

2:42 I’m constantly bargaining with life.

2:45 If I’m calm, maybe today’s meeting will go smoother?

2:49 If I do everything perfectly, maybe next time,

2:54 I won’t have to beg?

2:55 Hi.

2:56 You okay?

2:58 No one sees the 3am panic,

3:00 wondering what’s happening to them when I’m not there.

3:04 No one sees the dark waters that I’m treading in.

3:09 But sometimes I sink.

3:11 Quietly.

3:14 Disappearing.

3:17 Would anyone even notice

3:19 if I drown?

3:46 Some nights,

3:49 I thought about ending it.

3:53 Figured out how.

3:56 Wouldn’t it be easier to just,

3:59 let go?

4:01 To close my eyes and just,

4:03 fall into nothing?

4:08 No!

4:10 I can’t go.

4:12 Because I know you like no one else does.

4:17 Because you need me.

4:19 Because,

4:21 because I promised.

4:30 And that same love,

4:33 brings about the greatest fear.

4:38 That I’ll go first.

4:41 Who will remember what, what soothes you?

4:45 What overwhelms you?

4:46 What,

4:47 what makes you laugh?

4:49 [child laughing]

4:52 Who will fight for you if I’m not around?

4:56 So I plan.

4:58 I leave notes that no one will ever ask for.

5:02 Because loving you

5:04 means preparing

5:07 for a time I’ll never see.

5:29 I already grieve.

5:31 Not for my child,

5:33 but for the life that we might of had.

5:36 For the me lost along the way.

5:40 But even in my darkest moments,

5:42 I come back to love.

5:45 You are not the source of my pain.

5:48 You are the reason I fight through dark waters

5:50 to rise and to catch my breath.

5:54 I’m not saying this for pity,

5:56 praise.

5:57 I don’t want to be called strong.

6:01 I just want the world to listen.

6:13 I.

6:18 We don’t need you to pity us.

6:21 We need you to believe us.

6:24 Help us.

6:30 All we ask is,

6:33 when we say we’re drowning,

6:36 don’t study the tide.

6:44 Just throw the damn lifeboat.

Get in touch

Dr Siobhan O’Dwyer is Associate Professor of Social Care at the University of Birmingham and has spent the last 15 years studying the needs and experiences of unpaid carers, with a particular focus on suicide and homicide risk. She advocates for evidence-based change in pursuit of a fairer and more sustainable world.

If you are interested in getting in touch with Dr O'Dwyer about her research or to share your story, please get in touch at the relevant link below: 

Media enquiries 

Dr Siobhan O'Dwyer has featured in the media on numerous occasions, including Metro, ITV News, Care Fully Considered, and Boston Globe. If you would like to contact Siobhan with media enquiries, please email pressoffice@contacts.bham.ac.uk.

Many people will be shocked to hear that more than 40% of parent carers have thought about killing themselves. But what’s really shocking is that so many parent carers have been feeling this way and nobody has known until now. Parents of disabled children, and children with serious illnesses, are the hardest working, most dedicated people I know. But so much of what they do goes unseen, and they have to battle constantly with a system that has little interest in supporting them or their children.

Siobhan O’Dwyer
Siobhan O'Dwyer
Associate Professor