'We want to help in any way we can'

A family of a mum living with macular disease are showing that distance is no object when it comes to supporting someone with sight loss. 

Betty Chatfield’s four daughters, one of which lives in Australia, have been supporting their mum since she was diagnosed with dry age-related macular degeneration (AMD) in 2009.

Despite three of them living miles from Betty’s home in West Sussex, Emma, Yvette, Bridget and Veronica, carry out a number of tasks to help the 77-year-old retain her independence, allowing their mum to continue gardening and even safely operate a chainsaw.

Emma, her youngest daughter, said keeping their mum active was the priority. “We know treatments don’t progress quickly and we know mum isn’t getting younger so we’re doing anything to help improve things and keeping her active is key,” she said. 

As well as helping their mum with reading her letters and providing technical support, so she can continue carrying out everyday tasks, the four sisters have taken part in research to help beat macular disease. This has included taking part in surveys to highlight the support people like Betty need to continue to live independently.

Veronica, who does what she can to help despite living on the other side of the world in Australia, said: “I just want to help any way I can and if that is by filling out a survey to show what’s changed, how it’s affected us, then it’s one way we can help.”

She added: “Ultimately we want to see any sort of improvement to the support available to her, as well as treatment options, and that’s what we continue to look and hope for.”

Betty’s daughter Yvette, who herself wears glasses to help her computer, said: “It’s all to do with making things better to improve the services which are available to mum, to make sure people understand what is needed, and to know what it is like for our mum to go through and for the family, and that was my motivation.

“The point I always try to make is the need for more tech support. Mum wants to be independent and to do that involves the likes of online banking and online shopping and obviously that becomes harder because of her sight.”

All of Betty’s daughters highlight how well she has adapted to her sight loss and how well she has maintained her independence.

Despite being diagnosed in 2009 her sight only started to deteriorate in 2012, shortly after her husband, who Betty described as ‘her eyes and ears’ sadly passed away.

Yvette said: “She’s still very independent. She also loves working in her garden and to me it’s overwhelming how much she has to do in that garden but she must find it therapeutic. She’s out there tending to it and she still wields a chainsaw, an axe to chop wood, she cuts down trees with some local help too and she uses the wood to fuel her woodburner in the winter.”

She added: “Everyone I speak to says she is amazing and we think so too. She’s 77 years old and she’s still very physically capable. She has some help when she needs it for the bigger tasks but she’s not let her sight loss get in the way.”

Emma said she doesn’t see Betty’s determination to remain independent changing anytime soon.

“Mum hides her sight loss very well,” she said. “She has always been independent and nothing will stop her, which can be a worry as well as a good thing. She does need to remain sensible and she knows what’s happening. It’s about knowing when to stop doing certain things such as operating power tools and for her to know when to ask for help. When we are so used to our mum doing anything and everything we often cannot see ourselves where help is needed.

“Knowing mum, I don’t think that day will ever come where she won’t be able to do anything but if her eyesight continues to get worse that is a bad thing. She will and we will all find a way to continue supporting her.”

Eldest daughter Bridget added: “She can get frustrated sometimes, then we get frustrated because we can’t just nip down to help as we live miles away, so it’s not easy to commute to fix something for her. It’s hard for us to always remain positive” but she added: “She ploughs through, she keeps going and going and going through all these difficulties, so it’s very admirable.”

Betty, who is a Macular Society support group leader, credits her late husband Colin for her determination to remain independent. She said: “When he was alive he always told me not to worry and that he was my eyes and ears, because I couldn’t and still can’t hear very well either. When he knew he was dying he told me I would be able to manage and I can still hear him saying that now.

“A lot of my stamina to keep going is because of him. He was a very strong person, he shouldn’t have gone and it’s not fair.”

She also praised her daughters for rallying around to support her in his absence, but admitted that her deteriorating sight was means she was now struggling to see their faces.

Betty continued: “My daughters have been brilliant and they help with everything they can but they can’t be here 24 hours a day. I’m very proud of them, they’re lovely and that’s one of the hardest things; to have four beautiful daughters and it’s getting harder to see their faces.

“That’s really hard. I can’t always tell if they are smiling or read emotions and that’s difficult. It’s unfair when you have to work out which daughter you are looking at by the colours they are wearing. But, I know they are all lovely and that’s the main thing.”

For more information on supporting someone with a macular condition, do download our information leaflet.

Alternatively, if you are supporting someone with macular disease and would like to share your story, we’d love to hear from you at stories@macularsociety.org