Macular Degeneration - Marjorie's Story

I was asked to examine a lady's eyes in Ballymoney, County Antrim her name was Marjorie. She lived in a care home and had suffered a stroke three years previously and verbal communication was difficult for her. Other than that she was quite well and fairly mobile. Marjorie's daughter Lucy, had come from Coleraine, County Londonderry to visit her and was present for the test. The stroke hadn't affected her eyesight but she did have quite advanced Macular Degeneration (ARMD). This caused her to have very poor detailed central vision so she couldn't read, watch the television or recognise faces. Everything that Marjorie looked directly at, disappeared. A very frustrating condition. She could however navigate her way round the home with care as her peripheral vision was still intact. Unfortunately there was no treatment for Marjorie's condition and in this case spectacles were of no benefit. I explained this to Marjorie and to Lucy and was able to reassure them that the condition seemed stable and should not get any worse. I told them that a yearly eye test was vital to make sure that everything else stayed as healthy as possible. They seemed happy about this. At this point I just happened to mention to Lucy that she might notice when she was chatting to Marjorie that her mum may well not look directly back at her but instead look over her shoulder.

At this point Lucy's demeanour changed. She looked a little upset. She told me that she had been finding her visits to see her mum increasingly upsetting as Marjorie would never look her directly in the eye but instead look over her shoulder. To compensate Lucy would move slightly to re-establish eye contact, in reply Marjorie would look slightly to the side of her daughter again. This would carry on until both mother and daughter were nearly in tears. Lucy thought that Marjorie didn't want to look at her and that her visits were upsetting her mum. Majorie was thinking, "sit still I want to see your face, whether your smiling, frowning, whether you have your hair different". She just couldn't say the words because of her stroke.

I explained to Lucy that when her mum looked directly at her, she disappeared. When, however, she looked slightly to the side, Marjorie could sort of see her face. It wasn't perfect but it did allow her make out her daughters face. From then on Lucy let her mum look over her shoulder and her visits from Coleraine were much better.

Since that day we have used that story in our interactive training which we provide all over Northern Ireland. From Enniskillen to Ballycastle and from Lisburn to Newry we always get reactions from carers who tell us that wee Jean does that or they have noticed Peter doesn't look straight at you when you're talking to him. As optician's we don't get taught stuff like that at university, yes we learn about all of the diseases in great detail but not about how it impacts on people's everyday lives. It's only when we are out there every day meeting wonderful people like Marjorie and Lucy that we learn the really important stuff.

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