Researching and writing this piece got me thinking about what I would do if my parents were diagnosed with Dementia. I like to think that I have a close bond with my parents and, like many teenagers, my family have been a comfort blanket that wraps itself around me during tough times. I know I was born lucky; my parents and grandparents have proven to be the stitches on that blanket and together they give my life structure, continually helping me make sense of the small part of the world I inhabit. Whilst I was all too aware of the chances of my loved ones being snatched away through illnesses like cancer, heart disease or through an untimely accident, what I didn’t appreciate is how dementia cruelly tears that comfort blanket apart leaving you cold and grieving all while the person you love is still with you.
Sadly, we all know someone who either has dementia or who has lost, or is in the process of losing, a loved one to this dreadful disease. I spoke to a few friends who have had first hand experience of it. They all say the same thing: there are times that are amusing like the grandmother who continually dead heads the silk flower arrangements in the house and another who, so far, has stolen over 200 slabs of Christmas cake from an upmarket supermarket (she doesn’t even like Christmas cake). But more often than not this disease causes distress and frustration and anger not only to the person suffering from it but to those around them too. The pain of not being recognised by someone so dear to you, the disappointment of not being able to help them as the disease robs them of their independence and the weariness of dealing with all this day after day, year after year were just a few of the emotions my friends expressed.
Being a teenager or young person is hard enough with the constant pressure of perfection, accentuated by the ever present social media, during what are arguably the most formative years of your life. Dealing with everyday mundane issues is hard enough for most hormonal teens but add to the mix the huge emotional strain of seeing someone you love slowly dissolving into someone you don’t recognise or who in turn doesn’t recognise you is too heart-breaking to imagine.
A lot has been reported and written about mental wellbeing over the past few years and it is important to mention it again here. Any young person dealing with the complex feelings that can arise when someone they care about is diagnosed with dementia should be encouraged to talk about what they are going through. Dementia is often referred to as the long goodbye because it is a gradual but determined decline in health. The person you love will slowly but surely disappears before your eyes as they are robbed of everything that made them that person in your memories. It rarely happens quickly. If it is a grandparent that is diagnosed then it may happen when the youngster is a child so the disease may progress during their teenage years before it exacts its inevitable ending in adulthood. With so many changes in their own physical and emotional development it is vitally important that youngsters are sensitively guided through this time. They must feel able to speak up and ask for help in order to make sense of a disease that in an image conscious teenagers mind can turn a much loved relative into an embarrassing or irritating nuisance. Any feelings a child has about dementia and the consequences of its symptoms are valid whether it be rage or sadness or laughter. They will go through all the emotions before the disease has done its worst.
If a loved one has been diagnosed then there will be countless questions but fortunately there is a plethora of information out there. The internet provides access to websites such as www.youngdementia.org which points people in the direction of support available locally to them as well as providing an online network onto which youngsters can join and share their experiences and feelings with others. Search online or in local bookshops for self help books such as the well regarded “Where Memories Go” by Sally Magnusson who wrote the book while caring for her mother who was suffering with Alzheimer’s. For a light hearted but equally as informative read there is Knickers in the Fridge by Jane Grierson which offers another first hand account of caring for a person with dementia but told with an admirable and inspirational sense of humour.
At the end of the day the only things that really matter are memories and the very people we make them with. Whilst our loved one may slowly be disappearing from view and they themselves may be losing their memories it is vitally important that we don’t lose the love we have for them and we never stop showing them that love no matter how long the long goodbye proves to be.
written by Milly McCullum from Suffolk Age 16