Hear my voice | “I don’t look at the future too much because it can be very scary.”

In mid-September, Healthwatch Essex will publish the findings of our study into the lived experience of unpaid carers in Essex.

We recently met with Margaret, who cares for her husband, Toni, who has dementia. Their story foregrounds some of the issues that have also come to light in our research study so we wanted to share this with you.

As always, we’d love to hear what you think about the story – is it similar or different to your own experience? Email us at [email protected] to let us know.

Margaret and Toni, who have been together for 30 years, used to have big plans for their retirement.

“Toni is a very social being and loved having people here,” Margaret said. “We have gone from having big parties of about 20 people to about six. He finds it hard to connect and wanders off. I retired four years ago and had great plans of going to Canada and having all these great trips.”

Toni, who moved from Italy to England for work as a young man, met Margaret through friends and they lived next door to each other before moving into her parents’ former home ten years ago.

The affectionate couple share many interests such as gardening, ballroom dancing and travel, but Toni has become increasingly dependent on Margaret for his day to day needs since he was diagnosed with dementia in March 2012.

Toni realised something was wrong when he found himself in Aldi’s car park on the way home from a bowling trip with friends, unable to remember where he lived.

“He didn’t tell me about it at the time,” Margaret said. However he did go and see his GP and the news wasn’t good. Neither was the level of support offered.

Margaret, a former teacher, said: “We were literally there with one doctor and no support worker or anything and he gave me a computer printout on what it means to have dementia. That was it.”

Margaret, 64, did not know where to turn, but by a stroke of luck came across some information about the Alzheimer’s Society while on holiday.

“In the July we had gone away with friends on a coach holiday. We were at Tatton Park at the flower show and there was an Alzheimer’s tent. I went up to this lady and said ‘we have had a diagnosis, what do we do now?’ and she was lovely and gave me her email and said ‘go to your local Alzheimer’s Society branch, but if not, come back here’. I went down to the office and haven’t looked back since. They have been fantastic.”

Toni’s deterioration since that time has been gradual, but significant. He now relies on Margaret to give him all his medication, choose and lay out his clothes and remind him about hygiene, as well as plan trips, liaise with others and run the home.

When they go away, Margaret has to lock the doors at night so Toni will not wander off. She also finds she needs to leave the bathroom light on, so if he wakes in the middle of the night, which he often does, he is not disorientated.

The fond grandfather doesn’t get to see his Italian family often as they are all getting older and his siblings refuse to travel. Margaret and Toni have managed until now, but may not get there again.

She said: “We have just got back from Italy and I was quite surprised when there that he kept forgetting which rooms we were in. He would meet people and greet them and then would forget that he had seen them before and he had already said it about ten minutes ago. He saw one of his brothers about three times and when we came back to England said: ‘Did I see my brother Steve?’”

The charming Italian has now started speaking more of his mother tongue around the home.

Margaret said: “He speaks more Italian than he used to. I have to listen carefully because my Italian is not great. We get through it.”

Toni says he does it because Margaret needs to practice her Italian, but she suspects it is all part of how his age and the dementia have affected him.

Recently Toni tried to add salad cream to his coffee instead of milk, an instance which Margaret makes light of, but says is one of many ways that the illness affects him.

Having worked as a gardener after moving from Italy, Toni finds increasing solace in his Great Baddow garden. Margaret sees it as a way of him returning to the familiar, and sometimes wanting to avoid people in the house or situations which he finds confusing. She has, however, had to hide the weed killer after recently realising the 79-year-old was mistakenly spraying it on his plants.

Margaret has stuck pictures to their kitchen cupboards to make it easier for Toni to know the contents, and has a small board to write the day’s appointments on. She also takes photos when they go out so that Toni can remember them and they can chat about it together.

“Obviously Canada is not going to happen, “she said. “Toni finds it very difficult in strange places and couldn’t cope with touring. Increasingly I like to go somewhere familiar because he needs to know where the loo is.”

Since diagnosis, not only has the illness changed Toni, but there ways in which Toni has had to change his life, too.

“I think the loss of his driving licence was a big thing for him,” Margaret said. He will tell everybody that I said he couldn’t drive anymore but it wasn’t me. It was the doctor.”

Margaret, whose only daughter lives in Salisbury, has taken two courses with the Alzheimer’s Society and said they have been very useful although it is “quite sobering because it tells you which way it is all going”.

She is philosophical about Toni’s illness, and has taken practical steps to make his day to day life easier for them both. She suspects her career in a primary school helped prepare her for this time, as in many ways, Toni’s needs are like looking after young children.

One thing which she does find hard, however, is the winter. While Toni can potter in the garden all summer, he gets hemmed in when it’s cold, and there is less going on. Last Christmas was difficult because Toni had to be admitted to hospital, and a planned trip to see Margaret’s daughter had to be called off. Margaret said: “I am not even prepared to think about next year, because of last Christmas. It’s likely something will go wrong. I don’t look at the future too much because it can be very scary. You don’t know where it might go. It might go nowhere. I look at people whose husbands have had to go into homes quite quickly.”

The only time Margaret is apart from Toni now is when he goes bowling, or to the Alzheimer’s Society group or when he occasionally goes to stay with his son and daughter-in-law to allow Margaret to visit her 92-year-old aunt.

This is not, however, a break for Margaret.

“It’s like Carers R Us” she jokes. “I clean the oven, I go round the house, I do the garden. I am really just doing jobs.”

Typically of many carers, she is extremely modest about the effort and time which she spends on caring for Toni. She says “It’s only what people the world over are doing”.

She added: “I can’t thank the Alzheimer’s Society enough. Our friends have been fantastic, I have to say. I have met another friend through the Alzheimer’s Society. We actually went on holiday with them.”