Francesca Wolf has been speaking to a range of older people with sensory impairments to find out about their lives.

Getting old isn’t easy for anyone. Loss is a common theme and it comes in many forms. Most men and women lose people they are close to as they age - spouses, partners, and friends, family. Most, too, lose their place in the world of work. Money can be in short supply and health diminishes as physical strength and faculties decline.

There can be gains and benefits such as more time, a growth in wisdom and if life is kind, the joys of grandchildren or the pleasure of having days to potter and do what one pleases.

But for many it is one of life’s most challenging periods. And the challenge is even greater for those who lose their sight and hearing in later life. More than half of over 60s are deaf or hard of hearing and almost a quarter of people have both a visual and hearing impairment by 60.

Many lose their vision as they age through macular degeneration, glaucoma, cataracts and/or diabetic retinopathy, as well as suffering age-related hearing loss. Others, who may have been impaired for many years, see a worsening of their condition. A third group consists of those who have been deaf or blind from a young age and are therefore especially dependent on other senses: deaf people may communicate through British Sign Language which is dependent on vision; blind people may rely heavily on hearing. For this group losing a second sense in older age is enormously difficult.

Isolation, sensory, physical, psychological, and loss of mobility are both exacerbated by dual sensory impairment. Communication can become very limited and it can become increasingly difficult to go out or engage in the wider community. Obviously individuals vary: some find it easier to be on their own while others are very dependent on the company of others. But for many people the world shrinks as they are stuck alone inside, day after day.

It is shocking that this needy and deserving group is so neglected. We live in an ageist society where the elderly are often invisible and ignored. There is shamefully little specialised support for older people who are deafblind despite the fact that they are the largest group of those who are dual sensory impaired. Many are forced to move into residential care, which may not be sensitive to the needs of those with sensory impairment; others stay at home but cannot afford equipment or changes which would make life easier.

Given all this, the resources and resilience of older people who have dual sensory impairment is impressive. It is, at best, a challenging and difficult place in which to find oneself; one which demands considerable stoicism and courage. These qualities shine through in the very different individual stories that follow.

One can also see how little things go a long way. Individually tailored support helps enormously. A short visit, a hug, an outing or trip to the shops can make a world of difference. But what is most important of all, it seems, is to communicate and make a real connection.

Story 1

Jogn Rowley

John, 88, is registered deafblind. Profoundly deaf from birth, his sight has gradually diminished and is now almost completely gone.

He’s a proud, independent, genial and warm-hearted man with sparkly eyes. For 44 years he worked as a machine operator in a workshop run by the Royal London Society for the Blind. He loved this and retiring was very hard for him.

Recently life has become increasingly difficult for John who lives alone in a second floor flat in Stourport, especially since he broke his hip two years ago. But he has a lifeline in the form of visits from Sense Communicator Guide Linda Butler for four hours on a Friday and from Kim Edwards, a social services support worker, on a Tuesday. He also has brief visits from day-care staff.

On the day I visit, Linda, as always, helps him deal with his post, then takes him for a pub lunch followed by a shopping trip so John can choose exactly what he wants to eat or cook.

Through Linda he signs the following: “The hardest thing about being deafblind is the loneliness. Everything is always quiet. All my friends that are deafblind are dead, all gone. I’d love to travel to London but I can’t go out on my own.

“It’s the same thing every day. I’m frustrated, with no one to talk to. But I can talk to you (he beams and his eyes light up) and I’m happy with you. We have a laugh! You take me to the pub, shopping, for haircuts; it’s so nice to get out. You and Kim are my only friends.”

John is a proud man. He still does his own cleaning, cooking, washing and ironing. And he still finds some pleasure in life, watching sport on Sky TV, doing the lottery, or going to the pub for Scampi, chips and Guinness.

Recently John went on a Sense holiday to Brighton. He loved it all, the socialising, parties, dancing, bowling, pottery, playing the electric harp. “It was good because there were other people who could sign with me,” he says as he shows us photos. “Holidays keep him going for a long time,” says Linda.

But he has been lonely, and he’s stuck inside. So it’s good that he’s moving to a ground floor flat with access to a garden. John will still live independently, but the flat is warden-controlled and there are communal areas so he’ll have more company.

Linda has helped organise the move, the paperwork and she will help him pack and unpack too. John clearly finds this reassuring.

He’s a livewire with an active brain, but frustrated by his circumstances. Linda mediates between him and the world so he can keep his independence, self respect and contact with people and the community. This support makes a massive difference to his life.

Story 2

Ray

Ray is 92 years old and lives alone. She has glaucoma, macular degeneration and partial hearing in both ears.

“I started losing my sight in my 70s. I missed an optician’s appointment when charges came in and the following year was diagnosed with glaucoma. Then I got cataracts and macular degeneration. Hearing loss came later and has been more gradual.

It makes you feel very slow, and you often lose things. If I drop something I can’t find it, I have to get down on the floor and run my hand over it. The other day I found a £1 coin on the kitchen floor, it made my day! But you do have to be very careful with money and keys.

Social situations are terribly frustrating. You miss a lot; lose more and more of a conversation. You try to pick up clues and make connections but sometimes you get totally the wrong end of the stick. Recently for example I heard ‘scientologist’ as ‘gynaecologist’ and ‘text book’ as ‘sex book’! I realised my mistake but often I don’t.

So it’s isolating. Many people turn away and don’t look at you when they speak and the quality of one to one communication diminishes because you are slower to pick things up. You have to strain to hear, put it in context, then think of an answer. It’s tiring.

Confidence goes; your movements get slower. When I was small I could walk on a piece of cliff the width of my foot but now I take a stick and look at the pavement as I don’t want to fall. Sometimes I walk straight past someone I know well, they might take umbrage.

I still read but very slowly. The TV is on full strength yet often goes over my head. I can’t listen to music or the piano, which sounds tinny, like a honky tonk, so I don’t go to concerts or listen to the radio which used to be my two props.

I would like to have more people. They die, are no longer there to talk to. I was brought up in a family of seven and we are natural sharers. But I’d be difficult to share with now; you get set in your ways.

The general sense is of being slightly removed from real life. I don’t love people any less but I’m not so tied up with them. I don’t want to be a drag and am resistant to things I need help for. If I feel lonely I do something, go for a walk, do some washing, tidy, and have a glass of wine.

You have to find compensations, and I have many. I had a good run. I live in a ground floor flat so can go outside when I wish. More and more of the things I read when young, particularly poetry, come back to me. And all the beautiful gardens I have seen are in my mind’s eye, I can walk around the cherry blossom in my head.

So I count my blessings.“

Story 3

Mr and Mrs Millman

Mr and Mrs Millman are of early retirement age. Both were born deaf and have acquired visual impairment, losing an increasing amount of sight over the last ten years.

Social Services contacted Sense because the couple needed support to keep their independence. Their son, who lives elsewhere, is the main carer, but has health problems himself. So for two years Sense Community Support Services has supported the couple for 8 hours a week. One support worker works with the husband, the other with the wife.

They had been part of the deaf community but diminishing sight led to their becoming increasingly isolated. Both were BSL users from a young age. Mrs Millman still uses BSL to communicate but her husband (who has very little vision) often can’t see what she’s saying, so the support workers are encouraging her to sign with his hand on hers. Mr Millman is learning coactive signing and deafblind manual so that his communication is more tactile.

Support has helped the couple stay in their home and local area, which they didn’t want to leave. It also enables them to do things they otherwise couldn’t. They take Mr Millman to get his pension at the Post Office, to a Braille class in South London where he is enthusiastic and persistent, and he also attends a day centre. Mrs Millman goes shopping or to the day centre and if her husband isn’t there she sits with other people. “She enjoys socialising and it changes her mood,” says Nicola Dalby, a Sense Community Support Worker Manager.

Being able to spend a little time apart means they also enjoy coming back together again and have something to talk about.

Story 4

Luna Worrell

Luna, 78, is originally from Jamaica. She moved to the UK in 1961 and raised her six children here. She has a hearing impairment and just a tiny amount of residual vision in her right eye, due to glaucoma linked to diabetes.

For a while Luna tried living with a daughter in Florida but she had to return as her vision deteriorated. “I just couldn’t get the help I needed there,” she says. Living with another daughter in Folkestone didn’t work out so she moved into a residential home where she is delighted with her new room on the ground floor.

For five years Luna’s lifeline has been a communicator guide provided by the Kent Association for the Blind. This enables her to get out and about, go shopping, collect her pension, buy a lottery ticket and have a cup of coffee in a local café. She has a strong bond with her current guide Jackie Elliott and still keeps in close contact with the former one. Luna speaks of them with warmth and a smile on her face.

Now Luna has the care and environment that suits her. She regularly attends a craft class and is taking computer lessons. As a religious person she is supported by her local church which escorts her to and from services. However it’s the communicator guide service that allows her to retain an element of independence and decision making that could so easily be lost without it.
 
Luna was interviewed by Stephen McCarthy