John Kelley

John’s story: ‘If you have dementia you want to be included, you still want to feel part of things.’

John, 68, appears in our Dementia Action Week film - Kids interview people with dementia. John was diagnosed with dementia five years ago. He spoke to us about his experiences and shared some advice on how to start a conversation with someone living with dementia you know.

I lost touch with a lot of people when I found out I had dementia. They were worried because they didn’t know how to approach me, which made me feel really sad.

My cousin Les continued treating me normally – it didn’t scare him, we’d go down the pub and we’d laugh about it together. That meant the world to me. If you have dementia you want to be included, you still want to feel part of things. Life goes on.

Discussing dementia shouldn’t be awkward

When I felt more confident about the situation myself, I came out of my shell. I said to people, ‘talk to me about dementia, it’s nothing to be embarrassed about, I’m still here and let’s talk about it.’ People started to, and things got better.

And that’s the advice I would give anyone – there’s nothing to worry about, talk about dementia, get it out in the open. 

When people don’t talk to me, because of my dementia, it makes me feel invisible. I love it when people ask me questions because I feel included. It makes me feel like people care. It gives me an opportunity to show that people with dementia exist, that we can still contribute to what’s going on around us and that life goes on. It makes me feel good – it makes me feel like me again. 

John - kids interview

You can’t catch dementia

The most ridiculous, and you could say funniest, situation I have been in was when I was on a cruise two years ago. We were sat with a young family at breakfast having a nice chat, all getting on really well. The mum was trying to remember a word and she said – do you ever get that, forgetting things? And I said I get that all the time because I have dementia. Well, the blood drained out of her face, she took her kid and couldn’t get away from the table quick enough. She didn’t know what to say. Her husband apologised for her rudeness and said she was worried she was going to catch it. Catch it? I mean honestly! That really opened my eyes to how some people think of dementia.

In the end you have to be able to laugh about it – because if I didn’t I’d cry. 

John Kelly

Dementia Action Week is important because it’s about making a difference for people like me. It reminds people that I do exist, that dementia does exist. And we can all play a part in getting that message out there and improving the day to day lives for all of us living with dementia.

Get the conversation started by sharing our film

Alzheimer’s Society’s research shows that many people are worried about ‘saying the wrong thing’ to people living with dementia. And despite almost all of us knowing someone affected, two out of every three people living with dementia report feeling isolated and lonely.

Share our film to help challenge misconceptions and show that people with dementia are still themselves, all you need to do is ask.

12 comments

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My mom was recently diagnosed with Vascular Dementia. She’s in her late 50s and she’s so upset because she feels she’s too young. My mom and I have always been close so this illness is very shocking and sad to me. I’ve cried and cried since the day the doctors told us. Her however, got upset the day the home nurse told her-she’s very anxious and irritated. I feel like “how do I cope with everyday life knowing I’m losing my mom”? It’s also struggling to get in to see a neurologist and psychiatrist so the pressure has all been on me but I’m at road block feeling so helpless..

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So sorry you are feeling so sad. Does your Mum have a brother or sister that she grew up with? My husband's sister has dementia and one way that is really helping her is that now we cannot visit ( because of age, not the virus) my husband has started writing letters to her about their shared childhood and growing up years which her daughter reads to her. This has been a real breakthrough, she loves to hear the letters and laughs a lot at their escapades. It is very difficult I know to accept the distress and anger in the early stages but your Mum will have lots of memories she will be able to talk about and share with you.

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My parents live in rural Norfolk village, with one bus a day and no trains!
He has been told to stop driving by the memory clinic nurse, but no other advice or help given, other than medication, and then discharged. Other areas, especially major cities seem to have dementia nurses, Palliative care teams and day centres, help with taxi card and blue badge provision, but in the rural areas where surely the need is greater(due to isolation) there seems less or no support.

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Hi - I am “agast re the comment above about “still driving “ ........ I was diagnosed three years ago with Alzheimer’s and the overriding concern seamed to be that I hand my drivers license in ASAP!!!
This I did but as I live in the middle of nowhere doing this one simple act has possibly had the biggest impact on my life ...... I really can’t get out, go anywhere, other than my wife takes me!!
Q : is it possible that I might be able to get my license back? In myself I know that I am more than capable (and safe) to drive.
Many thanks for your time
Kind Regards
David

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Hi David, thanks for getting in touch. The topic of driving is one that we hear about a lot from people with dementia and we have a lot of useful information about it. If you read this page: https://www.alzheimers.org.uk/get-support/staying-independent/continue-… - it explains what you need to do if you want to keep driving, and what the laws are around driving and dementia. You might also like to look at some of our other driving articles here: https://www.alzheimers.org.uk/categories/support/driving. If you need support or advice, you can also call our helpline on 0300 222 11 22, or talk to others on our forum at https://forum.alzheimers.org.uk.

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Hi, my husband is being investigated for Vascular Dementia he had a stroke April last year 2019, he has had three memory test which he failed each time, he forgets how to use things like the remote,phone, micro wave, he gets very frustrated he also can’t find the word he wants we talking to name a few he gets cross easily. He had his driving license revoked a month ago. But he knows he would not be safe driving so doesn’t luckily I drive... prior to all this my husband was very intelligent so I guess that’s why he feels so cross & frustrated.

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How true many of these comments. My wife has suffered from AD for some 3 years. She refuses to talk about this even with friends, I feel she is ashamed to admit that she suffers from this illness. I do admit that I have cancer. what is the difference? We have an ILLNESS and cannot be blamed for this!

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I have found certain people have dropped my husband as a friend since his diagnosis of dementia but he is still the sat person but just can’t remember

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Yes it is a subject we should discuss more openly in public as there are to many people left isolated in our communities that need help ,friendship as they are people only with a condition .
My mother is in a care home with Lewy body dementia & to many times she is left in isolation without much interaction & John just highlights the lack of understanding on dementia

Thanks

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Some people with dementia have deteriorated much more than John and therefore can't talk or have a discussion with someone else.

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My husband will not admitt he has dementia. Sometimes I think he has to know He blames me for not remembering. He was diagnose a year ago and thinks the doctor is wrong. Will not go back to doctor. I’m going to support groups to learn how to handle this. He had gotten worse in this year since he’s seen doctor.

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I too have dementia - Alzheimer's Disease, in my case. It was diagnosed about three years ago, and so far has progressed quite slowly. I can still drive - I have had three driving tests since being diagnosed. My walking is a bit unsteady. My memory is poor, especially for minor things like cups of tea, which I usually let go cold. I have to rely on my phone for reminders of appointments. And I am anxious, especially about people, so I shut myself away for much of the time. I read a lot, and listen to music. My lovely daughters and a very dear friend get me out and about fairly often, but I'm reluctant about crowded places where I have to interact a lot. Listening to a lecture with one of my daughters is good. I like having to think carefully about an issue, and sometimes I write something as well. But the best things are a few friends and one's close family.

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