Eve was at a Valuing People national forum as a Learning Disabilities representative when she met Pete.
He was there to represent his region. Two years later they got married. Here Eve speaks to us about her life as a with learning disabilities.
How we met
I was at the national forum on behalf of the Disability Rights Commission.
I had been the chair of a local advocacy group and travelled around the country to network. I even went one trip was to Alaska.
Pete has several diagnoses now – visual and hearing impairment, learning disability, muscular dystrophy, OCD, mobility problems. Before we got married, I was helping him with his post, bills, things like that. 16 years on, I do all the household jobs, finance, his medications and appointments. I have to fix or get his walker repaired – and of course, I listen to his worries and concerns.
He doesn’t have a sense of danger. He’ll just cross the road or leave the cooker on. He gets up a lot in the night, I might have to get up too to get him painkillers. He can’t do up buttons because of his muscular dystrophy. He also doesn’t like change; he can get very angry and sweary, sometimes constantly, especially when he is struggling to do something. I often tell him “I’m not your shouting board, I’m not here for that”.
My husband is very unpredictable. He did not listen to advice about staying in with Covid. He has a lot of family conflict which I have to try to manage and keep things calm.
Despite all this, he also helps me. For example, he reminds me about my meds – when I had tonsilitis recently, he was the one remembering my medication. He also comes out with some gems – and he still makes me laugh, he cracks me up!
Impact of caring
All this has an impact on me. I get quite down. I don’t function properly. I have been run down and had a lot of tonsillitis. I feel tired and stressed. I know I do not look after my own health and wellbeing as well as I should as I am so busy looking after my husband. As well as having learning disabilities, I also have asthma, high stress levels, sleep problems and arthritis in foot.
Over the years, I have learned different techniques and strategies to help me cope with all this. I apply for a carers grant each year – I treat it as a chance to review what I can do to help myself. This time, I’ve been awarded some funds towards excursions when we go on holiday. This means I will have some time to myself and to have quality time with my mate.
When there’s a bad atmosphere at home, I’ll go off for a walk with a notebook – try to write things down to make sense of them. I often use post-it notes to help me reach decisions – this was how I worked out I should ditch my ex! Craft activities also take my mind of my situation – I make cards and take photos. I’m going to print some off for an album.
My learning disabilities
What helps is when people listen to me, and don’t talk down to me because I have learning disabilities. My disability means that I struggle with reading instructions like recipes or flatpack furniture. In fact, I couldn’t read or write when I left school. When I was 21, I taught myself to read, with the help of a children’s bible. That’s why I am so passionate about easy read versions of documents.
I need help with planning a journey. Medication instructions need to be set out very clearly for me. The services at Twinwoods, like the OT and visual impairment team, listen to me as a normal person, forget that I’ve got learning disabilities. But with some others, like social services, it can be a battle.
I like the People First slogan – “labels are for jars, not for people”. I don’t really like terms like “learning disabilities” but then again, it does mean you can claim PIP so you shouldn’t grumble about that. I am very principled and know right from wrong.
For the last few years, whenever they need to do a “service user” review for me, I request a carers assessment at the same time. It’s a good way to review if my carer needs have changed.
Help and support
I have a MENCAP support worker, so does Pete. Sometimes they will take Pete out for day trips, help us in the home and be someone to talk to. I am close to my sister who lives in Lincolnshire and we’ve got great neighbours – they really helped during lockdown.
I was on crutches when I first came across Carers in Bedfordshire. I made myself come to one of their networking days over in Bedford. I didn’t think I would count as a carer because of my learning disabilities. Yvonne Clark (founder of Carers in Bedfordshire) said “why not?” and registered me there and then.
I’m really keen to connect with other carers who themselves have learning disabilities. And I always speak up at partnership events to remind everyone to think about people with learning disabilities.