Grace (not her real name) shares her journey coming to terms with the catastrophic effects of her sudden sight loss. Grace lost all of her sight a number of years ago following a traumatic incident. She suddenly found herself with no sight, in a house that had been packed away ready to be redecorated. Grace said, “I didn’t know what to do.”
Initially, Grace did get in touch with NESS, but at the time, didn’t feel able to engage with the support offered. “I used to get letters from NESS but I couldn’t read them. I think it was another 9 years before the NESS social worker and the Housing Officer visited me together”. By this time, Grace was more able to accept the support offered.
When NESS got in touch with Grace again, she hadn’t spoken to anyone for about 15 years apart from her son and was unable to leave the house, not having the confidence or training to get out and about independently with no vision.
She had been living in a house without any heating, without any furniture, with belongings that were still packed up ready for the redecorating that didn’t happen after she lost her sight.
“Because I couldn’t see, I couldn’t do anything. The boiler was broken, but I couldn’t find out who to contact or use a phone to make contact with anyone and the only person I could phone was my son.” Grace describes it being a big relief getting support from the NESS social worker and the Housing Officer.
The social worker helped her to sort through her house and get rid of the build-up of things. The social worker organised new bedroom furniture, flooring and a new bed. They put up curtains, bought a new sofa, and arranged for the house to be redecorated, accessing funding to help with the cost.
The social worker found out that Grace hadn’t been receiving any benefits for a number of years. Her benefits had been paid into her post office account, but when the benefits system changed to only paying benefits into a bank account, Grace stopped receiving any money. Because of her sight loss, she wasn’t able to go and organise a bank account and sort out her benefits. During that time, Grace’s son supported her by buying her food and provisions from his own benefit payments.
Once Grace was getting support from NESS, the social worker was able to get in touch with the Department for Work and Pensions and Social Security Scotland to sort out Grace’s benefits. “I didn’t have a bank card or a bank account, so [the social worker] was able to get it all sorted out.”
Grace continues, “I can cook myself, I’ve got an air fryer, which I like and a microwave, but I can’t use a cooker. The [social worker] has given me the small orange stickers (bump-ons) – I use them to tell me where the timer is – I’ve got them all over the house, even on my remote control, and on my hoover. They help me do stuff around the house. I’ve now got a clock that tells me the date and time – before I didn’t know if it was morning or night, so the clock tells me that. I’ve got an alarm watch (community alarm) so if I fall or something, somebody comes up to check on me. The council have got my key, so they can just come in to check on me, if my alarm goes off.”
Having the community alarm helps Grace feel safe. Grace had a heart attack a couple of years ago and she now needs medication twice a day. Because of her sight loss, Grace gets carers coming in twice a day to give her medication.
A cleaner comes in once a week to help with tidying, hoovering, cleaning and managing bills. This is a big change from seeing no-one but her son for many years.
Grace told us about the greatest impact of losing her sight suddenly. “It’s really difficult,” she says. “Getting around, finding things – if someone moves something, I’ll never find it again, so if you touch something, or put it away, you have to put it back right, in exactly the same place so I can find it again. I like using carrier bags to organise things – it makes it easier to find things as I know what’s in the bags. The social worker has helped me clear some of the bags out and organise things better, but I still like using bags.”
Grace continues, “I was getting really disorientated, even in this small house – I couldn’t find my way out, so the [social worker] arranged for the Occupational Therapist to put in a handrail around the house so I can find my way around and find the front door. The railing is brilliant. I sometimes still get disorientated, especially first thing in the morning.”
“The other thing I find difficult is identifying cash notes, and I need someone to tell me what’s a fiver and what’s a tenner and then I keep them separately in my purse, so I know which is which. My son helps me organise my money.”
She continues, “I miss lots of little things – not being able to see someone’s photos when they want to show you a photo, not knowing what someone looks like. I don’t know what anyone looks like – I try and imagine it. I don’t wear any coloured clothing, only black, grey and white – I have lots of black leggings, so I know that whatever jumper I put on it will match. I miss going and having a walk about the shops, but don’t think I will ever have the confidence to do it – I would just bump into people and they would bump into me. I don’t like relying on other people to do my shopping, which my son and carer now do for me. I miss simple things like being able to see the sun when someone tells me the sun’s out.”
Grace was able to buy herself a new reclining armchair at Christmas. She explains, “The social worker had to go through all the chairs on her phone and describe them so I could decide which one I wanted. She even put the chair together for me, when it arrived with one of her colleagues. I can sit here with my juice and sweeties and watch TV comfortably.”
Grace was able to celebrate Christmas with her son last year, with her Housing Officer contributing a bag of Christmas goodies including sweets, crisps and Christmas crackers.
Grace explains that she now has a long cane and a small cane. “The social worker got me a white stick and she got me a small stick, a symbol cane, and I made this one out of a brush handle myself.”
Having the long cane has also meant she’s been able to visit her son at his house as the cane gives her confidence to find her way around. She is still learning to use the cane, and is building up her confidence slowly by practicing with her long cane and gradually going a little bit further.
Grace continues, “I taught myself to count steps to help me know where I am, for example, its ten steps from my chair to the window.
It’s 10 steps from the bedroom door to the kitchen sink.
Grace has learned other simple tips, explaining, “If I eat off a plate, I’ve to do with the clock, so if tatties are at 12 o’clock, peas at 3 o’clock and meat at 6-8 o’clock – I taught myself to do that.
Grace has gone through a lot of changes with intensive support over a relatively short period of time. She says, “It really feels like a house now, it feels comfortable, I’m happy now, I’ve got the heating running, and I feel confident that all my bills are being paid by my support staff. The house has been redecorated, and it feels clean. If it wasn’t for the NESS social worker, and the housing officer I would still be sitting in that mess.”
Grace’s experiences show the huge impact that sudden and traumatic sight loss has on so many aspects of day-to-day life. It also shows the long journey it can take to come to accept sight loss and the resilience that it can take to rebuild your life when sight loss has had such a huge impact on your day-to-day life.
[Image stock image provided by Canva]
