“See me, hear me, support me and value me.” A carer speaks

Note: I loved the speech by family carer and co chair of the Special Needs Parent’s Association, Lorraine Dempsey, at the launch of Carer’s Week, so I typed it up, and she gave permission for me to share it here.

“I have a daughter who is nearly 14 and has multiple disabilities and she has brought me on a unique journey. I wouldn’t have always identified myself as being a carer. Carers week was not on my agenda, and it was only recently that I looked at the role of carers and asked do I fit with the title carer? Is that who I am?

I began to identify as a carer when I recognised that my role far outweighs that of a typical parent. It was also the loss of other roles that I once had in my life: like having to leave the nursing profession that I’d worked so hard to join. I was now providing nursing care for my own child, but without the same level of recognition, and certainly with no money for my efforts.

So what needs does my daughter have that go above and beyond?

When she was a baby she had to be fed, watered changed, caressed, cuddled and comforted, but she also had to be had suctioning and tubefed.

I was handed a tiny 5 lb baby and told: ‘There you are, go home.’

I kept my nursing hat on and for me that was my protection against the all the pain we were facing with a baby that was being sent home to die.

That was the beginning of my journey as a parent, and all the while I had this beautiful other twin who expecting me to be mummy, and nothing other than mummy.

As the years went on, I still didn’t see myself as a carer, things improved slightly, and the medical equipment left the house piece by piece. But the mobility equipment came in, getting bigger and larger, and less child friendly as the years went by. The bright colours were dropped and everything became black plastic.

My daughter is now entering her teens, and I have a one year old who is in nappies, but I also have a 13 year old in nappies, who still requires support to be fed, who requires support to enjoy her life. And she does. She rules the roost at home, and she really does enjoy life.

I now identify with the 11% of women between 40 and 55 who provide unpaid care.

I also identify with the 2/3 carers who don’t work full time. I left a well paid job as a nurse, I left my own income and my own identity and I’m lucky that I have a partner who can support both of us, but that means the state doesn’t support us, we’ve had to struggle to find everything for our daughter, and I want the best for her, and the best sometimes means basic equipment like hoists, ramps and toileting facilities.

Being a carer can be made a whole lot easier by simple things, by providing services in the community so we can go out and enjoy things in the community. We’ve all heard about care being provided in the community instead of residential settings, but the community isn’t ready for that and we need to fight for the community to be open. I want my daughter to live with us in the community, but I need support for that – I am never going to drop my caring role until I die or her life is extinguished early, and all I’m asking is to be heard, to be seen, to be respected, to be provided with some level of dignity for the role that I do as a family carer, for my children to have dignity to be supported as siblings of someone who needs life long care.

My baby who is learning to walk, talk and climb has been watching me and I have a video of her spoon feeding her nearly 14 year old sister. That’s normal for her. But I don’t want her as an adult to feel any imposition that she has to look after her sister, I want to know that the State will support her to be just her sister.

Carers Week enables us to shine a light on carers’ roles, our needs, our aspirations, it gives us recognition for the selfless role we have on top of our roles as mothers and fathers, wives and husbands, brothers and sisters, sons and daughters.

My name is Lorraine Dempsey, I’ve been a carer for just over 13 years: see me, hear me, support me and value me.”

Her speech is here from 37 minutes.

 

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