I have encountered dementia both in family members and also in my working life. As a result, I would add one extra task to consider when planning for later life. That is, instructions on how you would like to be treated in the event of your having to live with Dementia. My “Living with Dementia Will” is shown below. Please feel free to copy and amend it to suit your own situation. I pray that it never has to be used.
Firstly, please never say that I am suffering with Dementia. I will try my very best not to suffer, if you will! It is a part of my life, the final part, so let us all try our best to get on with it.
Allow me to be who I want to be. If I believe something to be true, let it be so. Play along with me and let me enjoy my own reality that may be far removed from the truth. Allow me to believe those things. I’ll be much happier for it.
Do not treat me like a child. Talk to me like the adult that I am. Tell me news that I may or may not listen to, or understand. Tell me bad news as well as good.
Let me enjoy the things that I’ve always enjoyed. Help me to find a way to feel the sun, the wind, the rain, and the snow, on my face. To get cold and wet, and then get warm and dry, is part of life, part of feeling alive. I would like to feel that!
I used to go for a walk every day. I like to see, and hear, the birds, the wind in the trees, the sound of a stream. I like to feel the grass brushing against my legs, I like to run my hand through wild meadows. I talk to animals and birds, even to trees and flowers. Let me continue to do so.
I would welcome talking to babies and young children, stroking cats or dogs. If you can allow me to see and hear the sea, that would be a very welcome pleasure. Just one of these experiences, occasionally, PLEASE!
Show a bit of interest in me, and my life, even if you have heard the story I tell many times. Don’t correct me too often. My version may be the way I wished it had happened.
If I become agitated I may be scared, I may be confused, I may have had a brief episode of full understanding of my situation. Try your best to figure out what is bothering me and to reassure me that all is well. A kiss and a hug can work wonders. Even just holding my hand and smiling will be appreciated.
If I become angry, or violent, please forgive me. I have never been an angry or violent person, and deep inside I still am not. It is just as scary for me as it is for you.
Make sure that there are snacks available (unhealthy would be good), and let me enjoy the odd glass of wine or tot of whiskey.
If I do not want to eat please do not force me to do so, just make sure that I am properly hydrated.
I don’t drink a lot of coffee. I do drink a lot of Earl Grey tea, no lemon, no milk, just straight. I also drink fruit teas. Normally, just one cup of ordinary breakfast tea per day, strong, a little milk, no sugar. I like a cup and saucer, NEVER a mug!
Do not talk in front of me as if I’m not there. Especially, do not discuss my condition. I may not fully understand what you are saying but, you never know, I might!
Family and friends, you must not feel guilty if you cannot care for me and I have to move into full time care. It’s not your fault, and you’ve done your best.
Do not feel obliged to visit me every day, or even every week. What is right for you is the correct way to go. Cherish the memories of who I was. Do not hold on to thoughts of what I may have become. Deep inside I am still the person you have known.
Please don’t get frustrated if I mix up names, events, or places, or if I do not recognize you. Take a deep breath. It’s not my fault.
I most definitely do not want to sit in front of a television all day. I appreciate a bit of peace and quiet and have always been happy with my own company. I do not need constant music, although I do appreciate listening to a wide range, from classical to hard rock. I even appreciate some rap! I enjoy crosswords and scrabble, reading a good newspaper, not tabloids.
I have, at times, played all sorts of musical instruments, never very well, but I enjoyed it! If I bash out a non-tune on the piano, please humor me for a while and forgive me.
I like to read, and I like to write. I have written blogs, poetry, and published quite a few photographs. I’ve even partly written a biography. Maybe someone, someday, will sort through my electronic files and put it in some sort of order.
I may not be able to tell you how much you mean to me, how much you are loved, or how much your presence has made my life more complete. Please understand that I would not have been who I am without you. Whether you are my wife, my daughter, my family, my friend, my carer, or even just a passing acquaintance, I thank you with all my heart.
Above all else, treat me in a way that you would want to be treated, and keep me safe.