After yesterdays’s contentious blog, I thought a reblog of this one fitted in quite nicely. There’s a fine line with dementia, between being the person I want to be, as I am now, and going over the edge into someone I wouldn’t want to be – whether happy or not…..this blog was written for the eventuality of being unaware that I’ve fallen over that cliff edge…….not somewhere I want to be but with this cruel dementia you just never know when it will take hold and win……..
I found a list written by a young girl on the thepurpleelephant.org web site. She wrote her top 16 messages to her family. She wanted to make sure that her family hang up her wish list wherever she ended up living should she develop dementia…..
I’ve redone it and narrowed it down to my top ten…………
• I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it. It’s the world I’m in, you need to join me.
• I don’t want to be treated like a child. Talk to me like the adult that I am. Don’t surround me with fake images of the seaside – take me there to feel the sea air on my face.
• I still want to enjoy the things that I’ve always enjoyed. Help me find a way to do all these things.
• If I become agitated, take the time to figure out what is bothering me.
• Treat me the way that you would want to be treated.
• Don’t talk about me as if I’m not in the room.
• Don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live but please still visit me and make sure they have WiFi to FaceTime me!
• Don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
• Know that I still like receiving hugs or handshakes.
• Remember that I am still the person you know and love.
I’d be quite happy to have this list on my wall…….
Which me am I today? 
I shall certainly take a lot of these on board with mum x
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🤗😘
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I’ve copied and pasted this list; it makes sense to me. Thanks Wendy!
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👍🤗
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Wendy thank you..all these things l think of.even though l don’t have your diagnosis..just crappy cancer! I will print and keep safe x
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A wish list for everyone – sending hugs 🤗
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This is a lovely list x
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🙏🤗xx
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I quite agree the list as adapted by Wendy is something many of us could agree with, but part of the aim is surely to interrogate that and to do your own thinking and to share that thinking as with all those other conversations with those you love and who love you and will be impacted by changes in you and your health, as times go by and situations change. We understand now that sometimes our tastes change, and maybe we no longer want the music or the foods we used to like, so consider change, and how to communicate or test choices from time to time.
Take the first two, which alone fit fine, but if I think I’m three treat me nice but as a misplaced three yr old, else how can I understand?
Also realise how different it is for a carer who did not know the person or the times before, rather than a relative of the same era or an adult child, who differently did not know the 10 yr old you.
Sometimes think how you might engage with an individual you were visiting whom you do not know, and how you might try to discover where they were just then, and what might please then.
We have to work at this at the same time as acknowledging the vacant rabbit holes, finding new commonalities that don’t all start with Do you remember when….. Instead, try I was doing this that or the other, was that something you might have enjoyed? It could be that they did do that, or that they think now they might have liked to even if they didn’t.
Concentrat eon quality of presence less on quantity of losses.
but yes Wendy your list very much typifies to me the qualities we read from your blog that sustain you. Go for it!
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🙏🤗
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Wow and ouch! That ‘simple'(?) list contains and describes all the thoughts and feelings regarding ones wish to be regarded as ‘who I am’ not only in respect of the onset of dementia but for all humanity!
Should be hanging on the wall in a significant place in every home and work place!
Made me reflect on a lovely song from quite a few years back – What A Wonderful World.
Brightened my day and lifted my sprits!
Thank you!
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🙏🤗🤗x
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I love this and I’ve saved it too.
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Wendy, your list could so easily have been written about. Memory loss is a symptom of one of my health problems and is without doubt the worst symptom. But I have my son who can trigger my memories. I’ve read your book and started following your blog after the first few pages. I’m going to copy your list and adapt it slightly for me.
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Wonderful 🙏🤗🤗
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