Dementia Awareness Week – So, you’ve been diagnosed with dementia? What on earth do you do now?

In this blog, I’m not going to bombard you with facts and figures. I’m not going to give you any medical information about what is happening to you or what will happen in the future. I’m certainly no medical expert.

First of all, I just want to say thank you for reading this. I’m writing my thoughts based on what I have learned since I started capturing family life stories over six years ago. It’s a privilege to be invited into people’s lives to learn their unique stories. I have never met anyone with a boring life! However, I’ve also never met anyone without sadness, struggles, frustrations and challenges in their past. Our lives are a patchwork of experiences and the difficult times are the ones that teach us to be better people. I know that sounds trite but it’s true.

I bet the last few months have been stressful and worrying for you and I’m so sorry that life is difficult. Becoming gradually aware that your memory is letting you down is disconcerting at best and terrifying at worst.

Our lives are so busy; we have thoughts constantly darting around our heads like minnows in a stream. We are bombarded with information from all directions and it’s easy to feel overwhelmed. We all forget silly things. We all go to fetch something only to find that the identity of that ‘something’ has flown out of our heads by the time we get there.

Dementia brings a different kind of forgetting and people experience it in different ways. You won’t be the same as your friend down the road or the story you read in the paper.

So I return to my first question. What the heck do you do now?

You are going through this as a family. That family may be your children or your siblings or it may be your close friends or a support group. The fear of the unknown is huge so find out as much as you can and seek out support wherever it’s available. However, don’t fear and focus on what may lie ahead. Look at where you are now. No one can predict the future and no one can change the past. All you can do is live in the present. It’s important to make plans for the future but don’t live there. It’s not your reality. Your reality is today, this hour and this moment.

For any number of reasons, you might want to keep your diagnosis to yourself and not ‘go public’. That’s totally understandable and you might not be ready yet. You don’t want things to change and if you tell others, you might fear it will become ‘real’. You’re probably scared that it might define you and people might treat you differently or think less of you. The truth is that those who love you will already know. They love you regardless. And anyone who judges you isn’t worth the privilege of your time and attention!

You are still you. You are made up of all the life experiences you have enjoyed or endured since you were born. Now is the time to celebrate those stories. They made you who you are and you are amazing.

There are all sorts of ways that you can record your life stories and it’s a wonderful chance to bring your whole family together. In the future, you can return to these stories and enjoy them. Those around you can also share them with you and future generations will come to know and love you too. Your story will be your legacy and a window to a social history that changed dramatically over the last fifty years.

If you want to learn about ways you can preserve your life story, please get in touch with me, I’d love to hear from you.

Just a little thought to finish. You might feel stuck. You might feel that you are losing your old self and fearing your future self. You are still you and you always will be.

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