I am sitting in church. It is dark except for a bright light over the altar. The host is displayed in the monstrance (or ostensorium - it is the vessel to hold up the host) and two candelabra are lit up next to it. There is total silence and peacefulness. This is where I escape to at the end of the day to get away from the madness of life. I am lucky to have this place to go to.

My thoughts fall on the people with dementia, on their carers and all the telephone calls I receive each day from families who find themselves lost and alone, and so tired. Their loved one has dementia, and they have no idea what to do, where to start from. They are experiencing grief, desperation and anger. They feel so many emotions as they try to handle the situation and look Save and Exitafter their loved one. Dementia is cruel and there is no cure. How can I help them? Oh, I do, in many ways, as do our teams at the Malta Dementia Society. However, I find myself asking once more, how can I truly assist them?

I know what they are going through, I know how they feel because I was there myself, both with my mother and my aunt. When your loved one shows signs of dementia, you try to ignore it. You think of yourself and push it outside, push the problem aside. Yet, the person in front of you, that person whose symptoms are starting to appear, that person... what is that person going through? Have you stopped to think of that person? Are you so focused on what lies ahead of you? Yes, of course, you are tired and worried. Yet, what about that person in front of you?

I remember observing my mother when symptoms started to emerge. The look in her eyes spoke a thousand words, and words are what start to become a problem. Her eyes showed fear, anxiety and inner turbulence. She would look at us and almost beg an answer from us as to what she was experiencing. She did not understand, she could not put a finger on it, she could not believe that this was happening.

At that time, dementia was taboo, never spoken of and many did not even know it existed. My brothers are both doctors, living abroad, so they helped so much, so did the psychiatrist, but that was it... no services, nothing. My father, brothers and I learnt as we went along, helped my mother as best we could and faced the challenges one step at a time. Yes, the emotions were all over the place and the stark reality of the situation was hard.

As the dementia progressed, a huge sense of grief came over us. We were losing her slowly. My family and I dedicated all the time we could spare with her and my father. We focused on helping her and making her happy. She slowly went from a person who was so afraid of the changes she was experiencing to someone who started finding it hard to communicate.

Did the fear remain? I am not sure at what level, but, yes, I am sure it did. Could she think for herself? Science says a lot today. Dare I say what I believe? Yes, I will dare because I know we were special to her. Maybe she didn't recognise who we were, but she knew that we were special. Her eyes spoke her emotions, her wishes, her fear. Her eyes said bye to me as she slipped away. Her eyes were the door to us. She lost her speech, her ability to move. She lost it all over 12 very long years. Yet, she remained a wife, a mother, grandmother, aunt and friend to all who knew her.

"Inside every dementia there is a person" - this is printed on our MDS t-shirts. This is the true reality. Take a step back and look deep into their eyes. They are still there and do not forget that!

 

Malta Dementia Society is a full member of the Malta Health Network www.maltahealthnetwork.org. For more information on dementia visit www.maltadementiasociety.org.mt

 

Anne Cuschieri is secretary and PRO of the Malta Dementia Society