Look at me what do you see – I am still me…
I feel a bit confused, muddled up and keep forgetting, where I am, who I am and what I’m supposed to do.
I cannot understand the gradual change in me as I know I used to be very much in control of everything.
In fact I have raised a family, had a responsible job and have been a leading figure in the local community.
I now feel a bit silly and am scared to tell my family and friends although I know they too have noticed some changes in me. They sometimes ask ‘what is the matter with you, you keep forgetting things’
I desperately try to cover up my shortcomings but know that sooner or later things may get worse. I sometimes don’t want to go out, have a wash and change and feel very low due to the changes in me.
I am really scared about the future. I have heard of this dreadful condition called Dementia and how people’s lives are destroyed by it. However, I am determined not to give in without a struggle. In fact, I am ready for a long battle and I want you to join me – please.
Don’t be frightened for I am still me even though my behaviour may change at times. This is because I don’t seem to be connected at times, feel muddled up. I want you to understand that I still have life in me. My past is intact, my present is what I am going through and my future is what I will be. In spite of these changes, I am still me. Please do not ignore me or hide away from me for it could be you one day.
I still want to be loved, feel special and have my family and friends around me. I may appear a bit odd, not grateful or oblivious to my surroundings but please believe me deep inside I know what is going on around me. The trouble is that at times, I can’t express my fears, joys, hope and appreciation. However, now and again you might be able to see a glimpse of the old me. This I hope will be enough to remind you that I am still me and I am here with all my emotions.
I am not a baby, although you may feel that I act like one at times. I am a grown up human being. Sometimes I want to wake up and get out of this dreadful nightmare. It is a bit like being in a maze and not being able to find my way out. Thank God, you are there to guide and help me. Be patient, kind, tolerant and loving to me please. I am lost without you. Tell my family and friends that I am still me and I desperately need them to understand what I am going through.
Have you noticed sometimes you give me food and drink and I just sit there gazing at it not knowing what to do as if I don’t want it. Of course I am very hungry but the trouble is that I forget what I am meant to do with the food and drink. At times I can’t even recognise the cutlery. Please help me to feed myself.
I call for my Mum and Dad at times, this is because it reminds me of my past when they made me feel secure and loved. I suppose now and again I go back in my life and emotions take over and I need to be comforted.
Do not tell me that my Mum and Dad are dead, it upsets me. I only want you to talk to me, make me feel secure and loved as this reminds me of them. I am not crazy or daft, I know they are dead but at times I can’t help feeling their presence, affection, kindness and I desperately need you to comfort me.
Some of you may look at me and wonder whether I would be better dead than alive. Hey, watch what you say for I am still very much alive and want to carry on living as long as I can. I may seem to be slow, withdrawn, incoherent, irritable, tearful and disconnected but I can feel, see, hear, smell and love. I am still me. When I am sad, jolly, angry or tearful please bear with me. It is normal to express such emotions. Just stay beside me even if you have nothing to say I know you are there and you care.
Having attempted to explain to you how I feel and what I am going through right now, I do hope you will understand me better and will help me in my journey. Please come on board, join me and stay by my side throughout. There will be ups and downs, joys and tears, but I can promise you we will have lots of fun because I love you too and appreciate your help, kindness and understanding.
Thank you, please one last thing I must say, remember it could be you one day and how would you feel if others think you are no longer you.