A while ago Jonathan and I wrote about the fear of dementia. One of the big fears about getting dementia is the fact you could lose your voice and be reliant on others to interpret and meet your needs. I thought I would write some of the things I would want people to know if I got dementia or maybe another condition that meant I could no longer speak for myself.
I am still here...
- I am an adult, respect me and don’t treat me like a child.
- Please don’t talk to others about me as if I were not in the room.
- I still want to be included in the world, even if I can’t participate as I once did.
- Just because I can’t communicate doesn’t mean I can’t understand what you are saying or sense your mood.
- Please respect me as a person and allow extra time for me to make some decisions for myself.
- Please do no tolerate anyone disrespecting, ill treating, or neglecting me.
I want to be happy...
- Slow down so we have time to appreciate the small happy moments in the day.
- Keep a sense of humour and find things we can laugh about together.
- Let me listen to the music I love.
- Please don’t correct me if my memories don’t match reality. I don’t need to be reminded of the losses in my life.
- If I am acting angry or disruptive, please try to work out what is upsetting me.
- If I get anxious don’t be dismissive, listen to my worries, they are real to me.
- If I do or say something inappropriate, don't scold or shame me. I am not aware of my behaviour, try to redirect me instead.
I want to feel free...
- Please be kind to me and gently guide me rather than ordering me to do things I don’t understand.
- I don’t want to feel like a prisoner, if I want to go somewhere I can't, look for ways to meet that need or divert me, rather than telling me “No”.
- Take me out for a change of scenery sometimes.
I don’t want to feel lonely...
- Please visit me, even if I don't appear to recognise you and seem unappreciative.
- I still like to have my hand held and to be hugged.
- I like to feel the soft touch of petting an animal.
- Sometimes just having someone sit with me will be enough.
I still want to feel like I can do things...
- Help me to continue to enjoy the things I have always enjoyed.
- Find things that I can do to make me feel useful and needed.
- Break activities down into simple tasks, encourage me and offer assistance when I need it.
- I may not be able to converse on day to day happenings, but maybe you could ask me about something from my past.
- Be patient, if I am struggling with my words try offering suggestions.
- If I am having trouble eating with a knife and fork, try offering me finger food, so I can be as independent with my eating for as long as possible.
I want you to be happy...
- Don’t be upset if I don't recognise you.
- Don’t get frustrated with me if I repeat questions and don’t remember things you have told me.
- When it’s time, don’t hesitate to take my driver's licence from me. I would not want to cause an accident or hurt someone.
- Guilt is a waste of your energy. Take breaks when you need them, find me somewhere new to live if you need to. Caring for me may be exhausting, don’t feel guilty for feeling this, but try not to let me see it.
Thank you to all the people who do this for those who can no longer express their appreciation. You are all our heroes.