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It was a pleasure to look after my late husband Eddie (Sir Eddie Kulukundis, OBE) for 14 years, until his death three years ago.
He had always been a brilliant and exuberant man, a philanthropist who supported our athletes and the theatre – he brought more than 100 plays to the West End.
In his 70s he began to develop Alzheimer’s. From the minute he was diagnosed, I needed to give up work as an actress to look after him.
In my case, stopping to work did not mean I risked poverty. But others are not so lucky, and as the Centre for Social Justice report “Creating a Britain that Works and Cares” found, 400,000 family carers have already been forced out of paid employment to look after someone they love affected by disabilities or old age.
Yet crucially, this is a group that would like to hold down a job: 65 percent said they would take up paid employment if they could. They would need however more support, whether in terms of free domiciliary care, home adaptations or a higher earnings threshold at which their Carer Allowance is cut off.
This is not much to ask – especially when compared with the cost of putting a vulnerable adult in a council funded care home (average £600 a week) or nursing home (average £1000 a week.)
All carers, including myself, know we have to give up our identity. Dementia means 24/7 monitoring, because the patient is so vulnerable, they can get lost in their own street, or pick up a book and try to eat it, thinking it is a sandwich. I didn’t leave the room Eddie was in without worrying that he would fall. “We are joined at the hip,” I told him. And he would smile.
I remember friends, even close ones, saying: “I could never do that.” But I couldn’t have done anything else. And I would do it again in a heartbeat.
At first, he could still play bridge, we watched nature programmes – we loved David Attenborough—and we could laugh together.
But he became increasingly confused: one morning I remember he got up very early and put on his suit over his pyjamas. “I have an early business meeting” he told me.
It was heart-breaking, and I didn’t want to humiliate him so I pretended that his colleagues had rung to say the meeting had been postponed.
This became part of my role as carer: allowing Eddie to think that he was still in control.
It is so demoralising for someone to lose their faculties. They grow frustrated and I know that many carers are dealing with someone angry and ungrateful because their condition makes them so utterly dependent.
It took its toll, I won’t deny it. I would wake up often in the night to make sure Eddie was alright, and like all carers I was neglecting myself, never able to switch off.
Sometimes I did wonder how much longer I could keep positive. But then I would look at Eddie, and know that this is what I wanted to do. I don’t regret a moment.
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Source: NewsFinale
