Susan Hampshire talks about caring for her husband

Susan Hampshire

The actress and writer Susan Hampshire has been caring for her husband, Sir Eddie Kulukundis, 80, the former theatre producer and philanthropist, for several years. They discovered he had dementia and short-term memory loss 5 years ago, and Susan gave up her acting career 3 years ago to concentrate on looking after him at their London home.

How did you react when you knew Eddie was losing his memory?

You don't really admit what's happening to begin with. It was only when I'd returned from a regional stage tour that it dawned on me how serious it was.

I'd left three people looking after him. Within a matter of weeks he'd gone from being someone who could do a lot to someone who could do nothing.

What do you think happened to cause this sharp decline?

He'd say to the carers, 'I'm tired, let me sleep,' so they would give him his medication, and he'd go to sleep, with no exercise, no stimulation, no tenderness. They were happy for him just to stay in bed.

If they spoke sharply he withdrew and found it harder to express himself. When you are dealing with someone with dementia I believe you need to speak softly and gently, to coax them into doing things, like getting out of bed and getting dressed.

Can you describe the ways in which you help Eddie now?

When I started looking after him on my own he was like a zombie with two walking sticks. He didn't really know who I was.

Now we play bridge four times a week, he does word puzzles, board games. Even when you can't participate in the organisation of your own life, if your mind is active the brain can improve itself.

I honestly believe his memory is better now than it was two years ago.

Can you talk about Eddie's diet and physical well being?

At his heaviest he was 22 stone. He now weighs 16.4 stone which means he can get out of a chair without help. Physically he has never been better.

When he was younger, seeing people, being sociable, he would eat everything in sight.

Now I prepare all his meals very carefully because I believe you are what you eat. So Eddie eats a lot of garlic, tomatoes, pulses, fruit, vegetables, smoked salmon, as well as occasional treats like a roast dinner or a packet of crisps.

Does he take a lot of medication?

No. He has Type 2 diabetes, but he no longer requires pills for cholesterol because that's not a problem any more. Now he takes two pills daily for his diabetes, Vitamin B, cod liver oil, acidophilus, and one low-dose Aricept at night. 

Do you have to tell him what to do all the time?

Mostly, yes. But I've found all sorts of little tricks to get him motivated, things to entice him to be active in mind and body.

Things like putting his glasses where he can see them so that he will think about doing a word puzzle when he gets up, or finding a nice natural history programme for him to watch on television.

How have friends and relatives reacted to Eddie's condition?

My five-year-old grandson comes to the house two days a week after school to play dominoes with Eddie which is lovely because he just accepts the situation as it is.

Eddie had an incredibly full life, and he was very sociable, but it's tiring to take people out to lunch because they think they should see him. It just finishes up with me doing all the talking.

I know it's selfish but it is just too exhausting. It is more beneficial for Eddie to go for a walk. I don't have a problem scaling down our social life.

Are there are any pleasures left to Eddie?

He likes talking about the past to people he used to work with, and I think he enjoys the bridge and playing Chinese chequers, but I do worry whether he is enjoying his life as a whole. He always says that he is happy.

Do you ever take any time off? Don't you miss acting?

I don't take any time off now. I have nobody helping me now because I'd rather not have anyone than the wrong person. I thought I'd go mad not working but I'm perfectly happy looking after Eddie.

I get tired but the rewards are that Eddie is getting better. I've had my day in the sun. I feel this is the right thing for me to be doing.

If I'm able to make his life easier and more rewarding it is in exchange for all that he has done for me in the past.

Has anything good come out of it?

When we were first married (in 1981) he was always busy, travelling around, meeting people. I suppose I could say, quite selfishly, that it is lovely having him to myself and not having to share him with 9,000 other people.

What have you learnt about caring for someone with dementia?

Never to get cross or raise your voice, always try to be gentle and patient, that seems to bring out the best in them.

Give them good brain food, don't let them lie around in bed all day.

Find things - puzzles, Sudoku, board games, old photo albums - that get their brains working, or talk to them about their schooldays and subjects you know will engage their interest.

Do you ever give in to self pity?

No, I've always been a glass half full sort of person. Besides I have nothing to be self pitying about. We're doing so well, Eddie and me. We'll jog along together and see what happens.

 

Interview: Nick Smurthwaite

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