"I was determined to get help for my mum"

When Ruth was diagnosed with age-related macular degeneration (AMD) last year, it was her daughter Ann who saw it as her mission to find her mum much needed support.

The pair had not heard of macular disease, and the thought of Ruth having to adapt to new challenges alone was a scary one.

Discovering the Macular Society’s support group in Coleraine led to a new-found confidence for Ruth, who attended for many months until her sudden passing in February of this year.

Ann said: “AMD really knocked mum’s confidence. When she was diagnosed she was told to be careful and mind she didn’t trip. That really made her afraid to be out and about on her own, just in case she had a fall.

“She went from being a very independent woman to being someone who needed help with everything, from going around the home to shopping.

“It was quite a change to witness. She had always been so very independent so for me it was very sad to see her in need. It’s sad my mother had got to that stage but she had looked after me all these years, so it was my turn to look after her.”

Ruth's diagnosis

Ruth, who was 87 before her death, was diagnosed with wet AMD last summer, having initially suspected something might have been wrong with her new glasses.

Ruth said: “When they said I had AMD and that I will have to live with it, well that was a bit of a shock. I didn't understand what macular disease really was and the first thing that came to mind was ‘am I going to go blind?’ The doctor said ‘no’ so that was reassuring and I started a plan for injections. Everyone was so helpful and I’ve been put at ease over these past months.”

Support from the Macular Society

Ruth was put in touch with her local Sensory Support Team for home equipment aids and advice, and through word of mouth they were directed to the Macular Society and their local support group, where they were able to connect with others living macular disease.

Ruth said: “The group down in Coleraine has been marvellous. I had some reservations about going but I realised some people were at the same stage as myself and I’ve met some lovely people, who are really encouraging. It’s great, I appreciate everything in terms of support that I’m getting and I do feel different in myself because I have more confidence since I started going.

“Through talking to people who are more advanced with it, I know about their experiences and how it might affect me in the future, but I feel confident I will be able to cope.

“I had a shock to be told I had this condition, it wasn’t expected and I felt like I’d be the only person in the world with it. So the group is a great help and I look forward to it each month.”

Importance of finding group support

The impact of the monthly support group was not lost on her daughter Ann, who was desperate to find any help she could for her mum.

Ann said: “Not knowing anything about the condition scares you more, until you realise just how many people are out there in the same situation. That was really surprising to know about all the support and that other people were living with AMD.

“When I first heard about my mum’s condition it was my determination to find any help that I could for her, to see if any groups existed because I didn’t want her to be on her own.”

And the Coleraine Macular Society Support Group inspired Ann so much, that she quickly decided to become a group volunteer.

“For my mum, going to the group helped her no longer feel alone with this condition and through being with others she learned to live with it. She loved to knit and she was a great knitter but with the AMD she had just put that to one side for a while. But it’s like the knitting, or doing her puzzles, she gradually got back to doing these things that she had always enjoyed, and that is thanks to the group.

“I'm learning as well, and I like going, even just to make the tea or wash up afterwards which I hope is a big help.

“I am just so grateful that there is a support group close to where we live, so by helping out is me really trying to say thank you in some way. I want to give something back, show my gratitude for the help and encouragement that it gave to my mum.”

Our services in Northern Ireland are funded by The National Lottery Community Fund Northern Ireland, we thank the players of the National Lottery who have made it possible for people like Ruth to access the help and support they need.