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This #DementiaActionWeek, we're hosting #AskUsAnything takeovers with people affected by dementia, to make sure their voices are heard.
Say hello to Emily. She lives in Belfast with husband Jim, who was diagnosed with dementia in 2014. They have 2 daughters and 3 grandsons.
Say hello to Emily. She lives in Belfast with husband Jim, who was diagnosed with dementia in 2014. They have 2 daughters and 3 grandsons.
Emily is an avid fundraiser and volunteer for Alzheimer's Society. Both her and Jim regularly attend Singing for the Brain sessions and memory cafes.
In her spare time, Emily enjoys crafting (even if she says she's not very good!) and reading. #AskUsAnything #DAW2019
In her spare time, Emily enjoys crafting (even if she says she's not very good!) and reading. #AskUsAnything #DAW2019
Emily will be answering questions between 3-4pm today. If you've got something to ask, let us know by replying or using the hashtag #AskUsAnything.
Whether you want to find out more about her life as a carer for someone with dementia or about herself, we want to hear from you.
Whether you want to find out more about her life as a carer for someone with dementia or about herself, we want to hear from you.
Q: Did you know much about dementia before your loved one was diagnosed?
A: I knew nothing about dementia. When Jim received his diagnosis, we knew it was bad. It was a very steep learning curve. At that stage, Jim was 66. When we heard the word 'dementia', we thought it was a diagnosis for older people.
Q: What’s the strangest question you’ve been asked about Jim's diagnosis?
A: We've never made a secret of Jim's diagnosis. We've always been very upfront with friends and family about it, but the strangest question we get asked by other people is, 'Does Jim still know who you are?'
A: Jim does know who we are, but his dementia with Lewy bodies diagnosis affects him in other ways. His initial symptoms were heightened anxiety and depression, and his logical thinking were badly affected.
Q: What can the public do to make life easier for people living with dementia? #AskUsAnything #DAW2019
A: Reframe questions. Avoid using 'W questions' - who? what? when? where? When I ask Jim questions, instead of asking 'Do you remember when we were in Yorkshire?' I'll say, 'When we were in Yorkshire...'. Make a statement - they can add their experience. #AskUsAnything #DAW2019
A: Introduce yourself, as they may not recognise you straight away. For example, 'Hello Jim, I'm Johnny, we used to play football together.' Give your name and put yourself into context. #AskUsAnything #DAW2019
Q: What would you say to other carers who might be struggling with care needs? #AskUsAnything #DAW2019
A: Look after yourself - you can't pour from an empty vessel. Accept all of the help you can get. Don't struggle on. Contact @alzheimerssoc for support. If you haven't got a social worker, get one. And contact your GP - they're there to help. #AskUsAnything #DAW2019
Q: What’s your favourite way to relax? #AskUsAnything #DAW2019
A: Jim was a huge football supporter and was an avid pigeon racer in the 1980s and 1990s. As for myself, I like to read - I like historic novels. And I like to knit. Together, we enjoy walking. #AskUsAnything #DAW2019
Q: What was your best holiday?
A: In 2015, we went to the Gold Coast in Australia - we went to visit Jim's brother who emigrated there in the 1960s. We spent the three weeks with family, enjoying the weather and the company #AskUsAnything #DAW2019
Q: What’s the top item on your bucket list? #AskUsAnything #DAW2019
A: Back in my schooldays I studied the History of Art and I loved it. Because of this I'd like to visit Greece, Istanbul and Venice for the history. And I'd go back to Australia to visit Jim's extended family #AskUsAnything #DAW2019
Q: What makes you laugh? #AskUsAnything #DAW2019
A: I think I have the ability to laugh at myself. I'm known for doing silly things, like dressing up as an elf for #ElfDay. And I love Fawlty Towers - Jim and I watched the episodes together back in the 1970s #AskUsAnything #DAW2019
Q: How did your family/friends react when you told them about Jim's diagnosis? #AskUsAnything #DAW2019
A: Jim just seemed to accept the diagnosis. I cried. Our oldest daughter said, 'Dad just has a label now.' Our younger daughter wanted to wrap her dad in cotton wool #AskUsAnything #DAW2019
A: Jim used to describe his dementia diagnosis as, 'I've got something wrong with my brain.' Because he didn't show outward signs of dementia until the later stages, other people had a hard time accepting his diagnosis - it was like they didn't believe him #AskUsAnything #DAW2019
Q: What’s the best experience you’ve had since Jim's diagnosis? #AskUsAnything #DAW2019
A: Jim's diagnosis has been a gift to me, but made my hands bleed when I opened it. It has made me appreciate the man I married. He supported me through my Master's degree. He supported our daughters, my mother, my sister when she was ill #AskUsAnything #DAW2019
A: The experiences I've had since Jim's diagnosis have made me stop and appreciate everything in my life. Sometimes we're all so busy living we don't stop to think, to reflect. Jim's diagnosis has given me that opportunity #AskUsAnything #DAW2019
Q: What celebrity would you like to have dinner with? #AskUsAnything #DAW2019
A: If I was going to have dinner with anybody, it would be to get one up on Jim! He saw The Beatles in 1963 and still tells people about that, so I would choose Paul McCartney so I could go home and tell him! #AskUsAnything #DAW2019
Q: What achievement in life are you most proud of, and would want people to know about?
A: My daughters are a wonderful achievement. I traveled to India with Habitat for Humanity to build homes. And my role as a volunteer, informing people about dementia, how we can all make a difference, and that you can live well with support #AskUsAnything #DAW2019
For more information about dementia with Lewy bodies, visit bit.ly/2LZmlyU. And if you'd like to find out more about how you can volunteer like Emily, visit bit.ly/30u143z.
