Talking about Dementia with the Children and my story

Talking about Dementia with the Children and my story

My Nana had Alzheimer’s disease. I watched her go from her vibrant, funny, cuddly self to a shell. It was gradual. When my Grandad died suddenly during a heart bypass operation, we noticed it soon after. My dad suspected that he had been hiding it from us. They lived with us at the time, but had separate facilities. She was forgetful, and didn’t cook as much as she used to. She kept buying frozen cakes and desserts, the freezer was full of them. She kept forgetting her house key and locking herself out. It was almost funny at first, we’d all be talking and then she’d repeat herself, start the conversation again, or claim she hadn’t had a drink and needed another glass of Dubonnet! Then, it wasn’t so funny anymore.

She went to a specialist, and it was confirmed she was suffering from a form of Dementia, most likely Alzheimer’s disease. I remember her coming back and thinking, she’s ok, she won’t remember anyway. Then I saw her crying. She tried to put a brave face on for me. I was heartbroken, she did know. I know in time she forgot, or lost the capacity to care, but I still remember that day.

My mum and dad looked after her for as long as possible, even though she told my mum to shut up and go away on many an occasion, and seemed ungrateful. Once she needed more than a little help with personal care, they couldn’t do it anymore. I was surprised they did it for as long as they did. I had done my nurse training by this point and I had seen some nice and not so nice nursing homes. I wanted to make sure she went into one that was as good as possible. I was happy with the choice, although I lived a fair distance away. I visited when I could, but it was upsetting to see her decline so much, she could hardly speak the last year or so and I waited, in fact almost wanted to hear of her death. This wasn’t her how I knew her – warm, funny and kind, who could whip me up a prom dress on her sewing machine.

When she died, we talked fondly and remembered her at her funeral, and buried her with her husband. Rest in Peace Nana xxx

This week, the 15-21/5/2017 is Dementia Awareness Week, and it’s given me a chance to reflect and talk to the children about the meaning of the word dementia and Alzheimer’s in a positive way, if there is such a thing. I hope they never have to deal with it in their lifetime, but the reality is, they will most likely have to. We have teamed up with Active Minds, as part of their Forget Me Not campaign, who sent us some forget-me-nots to plant with a pot and watering can to decorate.

More importantly, some conversation starters and topics to guide and introduce them to the topic. It’s harder to do when you don’t have a living relative with dementia, but I talked with them about my Nana, and how some people when they get older, can become forgetful and change, but it’s important to remember it’s not their fault. Maybe your parents or grandparents have some early signs of dementia and your children are confused by the changes. Firstly, don’t hide things from them, they know something is different, and if they find out later, they may feel left out or that they were lied to. Talk to them about the brain and how we learn to do things as a baby, then explain it as an illness that affects the brain. You can talk about how it might affect their relative in small ways without frightening them.

Once we’d decorated the pot and watering can, I say we, but it was Phoebe and William with me watching, we filled up the pot with compost and got out the tiny black seeds that grow into forget-me-nots. The little blue flowers are so delicate and pretty, and they will now always remind me of my Nana. We gave them a good watering and by the afternoon Phoebe was asking when they would grow!

If you have a loved one with Dementia, I wish you strength and courage. Sometimes there will be flashes of the old personality in there, and even if they no longer know your name, human kindness and warmth is always recognised, they will always be pleased to see you and hold your hand. There is lots of support out there, both financial, physical and emotional. I know I struggled emotionally with where the personality goes, and what constitutes a person. When they are living, but not living as they were, are they already dead? Philosophical I know. Having Amy, my first child who died from Tay-Sachs Disease (you can read her story here) at the same time as Nana was suffering the late stages, made me seriously question spiritual beliefs. If our soul is our brain and our feelings and memories, when that goes and the body is still living, what does that make us and where does that go? I am an atheist and a believer in science, not Karma or religion. Sorry to get maudlin on you but that’s how I feel. I sometimes wish I did believe in religion because I see how it brings people comfort. I respect other people’s beliefs, but I don’t like it if they try and convert me or preach to me – please respect mine, or rather my non-beliefs.

I found this video of children in a UK school that is ‘Dementia Friendly.’ It’s a wonderful idea, the parents and children are encouraged to become Dementia friends, who give company and time to people with Dementia. I think it’s wonderful, and has some great ideas on educating young children about Dementia.

I hope you’ve found this post helpful, or it’s brought about some interesting discussion. Do you or have you had a relative or friend with dementia? How did you talk to the children about it? Feel free to comment below or message me if you’d like to chat.


Disclosure: I received the pot, watering can, seeds and craft bits at no cost to me. I have not been paid for this post. All opinions are my own. 

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  1. August 29, 2017 / 4:03 pm

    Thank you for sharing this! It is definitely important to introduce this to kids to make them more aware of things that can happen and things happening around them. Great post!

  2. September 7, 2017 / 8:39 pm

    We had an almost identical story with my grandfather. Granny outlived him but the rest – the hiding it and the gradual retreating into himself was heart breaking. 2 days before he passed away (he died the day after our wedding which was so so sad) I visited him and we aang an old song we have always sung as a family and he joined in where he could. He heard about our wedding and then quietly slipped off. You never know what’s there and what’s not but I like to think he was there enough to appreciate the love around him while hoping he wasn’t there enough to mourn what had happened to his brilliant brain. Dementia / Alzheimer’s are just ugly brutal diseases.

  3. September 26, 2017 / 3:42 am

    Your story is touching. And thank you for sharing the video. Elderly need to keep connected with youth. This is true whether they have dementia or not.

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