Who cares for the carers?

“We’ve always been together. We did everything together. ”

This is what Bernadette Scully told the Central Criminal Court in Dublin,  as she took to the witness box to give her account of the events leading to her daughter’s death.

“We’ve always been together.”

These are the words that jumped out at me when I heard the report on the radio earlier this week. Bernadette and her daughter, always together. For better or worse. And how might that make Bernadette feel? And how was it possible to care for herself, and care for her daughter equally? And how she had given herself over to care for her disabled daughter.

Bernadette Scully, who was also her daughter’s GP, is accused of giving her a daughter a lethal dose of sedatives, resulting in her death in 2012. She denies the charge. Dr Scully told the court that when she realised Emily was dead, she made two attempts at her own life. She admits that life was difficult caring for Emily, but said that, “I loved that child more than life itself, I would not hurt her deliberately.”

The jury will ultimately decide whether the GP is guilty of the manslaughter of her daughter, but what is clear is the time devoted to caring for her daughter, and the love she had for her. She says they did everything together, that Emily ‘was a part of me’ reflecting that love and dedication, but also indicative of an absence of respite. It should not have been necessary for Scully and her daughter to do everything together. 

Earlier this year, Rosita Boland writing in the Irish Times shared the story of Johanne and Alan Powell, caring for their 32 year old daughter Siobhan. Siobhan cannot walk, talk, nor eat solid foods. Their story is staggering in its honesty,

“I’m going to be very straight about it: she’s not special. She’s damaged goods. I wanted the child that I thought I was going to have.”

Whilst Siobhan does benefit from some time in an HSE funded centre on a daily basis, her parents believe it would be for everyone’s benefit if Siobhan were in long term residential care. Johanna told Boland, “I don’t think she should have to sit at home and be part of us; she’s in a symbiotic relationship with us.” However there are currently over 50 people on the waiting list for this service, when a bed is made available it is allocated on the basis of need, as assessed by the health professionals. It’s likely that because Siobhan has two parents who have given their lives over to caring for her, she is not assessed as high priority.

Carers are often talked about in superlatives. We call them superheroes, tell them we could never do what they do. But that is only consoling ourselves, relieving ourselves of the burden of guilt that as a society we are failing these people. “I don’t know how you do it” translates as “but you can do it, you are surviving.” And maybe they are surviving: Johanne and her husband survive. They manage. But do they live, as you live? Johanne Powell describes a life where a day out together with her husband has to be planned months in advance, and a spontaneous dinner in town is as much an anathema as a trip to the Seychelles. This is not living, this is existing.

Carers are not superheroes. They are as normal as you and me, living the hand they were dealt. The trouble with the superhero narrative is that minimises the effort required to care for someone full time. Things are easy for superheroes. Life is not easy for carers and we are fooling ourselves if we think they have been allocated special powers to cope. Life is not easy for carers. It is hard and it is long. They deserve to be cared for too.

9 thoughts on “Who cares for the carers?

  1. Yes–this. Your point about the platitudes of “I don’t know how you do it” are exactly as you describe and I don’t think I have ever heard it put quite that way. I have a close relative who does very little to help and yet will comment “I just KNOW he’s going to be fine one day.” which completely negates the very, very hard work he has done in the 11 years of his short life that are still lived as incontinent, illiterate and unable to make his needs always clear. It is not for a lack of trying. I have tried to explain to her that it is disengenous to comment in such a way, especially when she does not realize the sacrifice on my end as well. And like you say, its a way to disengage and not take responsibility or assist. Thank you for clarifying something I have had trouble putting into words.

    Liked by 1 person

  2. I read all these stories and found them unbearably sad. Bernadette Scully is the one who struggled to have a child after several miscarriages and IVF, and then found herself with this profoundly disabled daughter that she had not expected and couldn’t cope with, and no support. It very much made me stop and think. The other couple, who have talked about not having the child they hoped for and of wanting time away from her, I think are extremely courageous. Ireland is not an easy place to speak out like this: it goes against the cultural grain of keeping everything in the family and accepting your lot/the hand dealt by God (i.e. there is very, very little domestic adoption of disabled kids, or kids with any issues, or any kids at all really, because they are normally kept within the extended family). I recall seeing some very brutal comments about them on Facebook along the lines of “you made your bed now lie in it…” and many accusing them of selfishness etc. I’m glad Ireland seems to be opening up to these issues and listening to these people. I don’t think that people who have never done full-time caring for a sick or needful person have any inkling of what it’s like.

    Liked by 1 person

  3. I get told all the time “you are amazing”, or “I couldn’t do what you do”. (I care for my elderly parents, one with physical ailments, the other with mental deterioration). I try to maintain my “day job”, on a part time basis, because I know it’s important to not be in the house all the time. Having a cuppa in a coffee shop with himself is now a treat – something we took for granted in the past. I make plans to go out, most times I get called to come home, a lot of the time an unnecessary call. I really enjoyed your post, caring comes in so many shapes and forms and to read a post that conveys understanding is so refreshing, thank you.

    Liked by 1 person

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