There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.
One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.
This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.
At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really guilty. Inside my head is a chamber holding contradicting thoughts each trying to have their say; caring vs living with the disease. Too much ‘shouting’ does not allow me to sort out the mess of emotions that make me feel the way I do about it. It would be so easy to simply shut down without processing any of it and become the ‘patient with the disease’ mindless, and accepting of the confusion, blocking any meaningful process of mental activity, blocking out the effect of my disease will have on my family and friends.
What I feel when I read about the torment suffered by carers is: irritation and anger:
Answer: How dare they shout about a disease which they don’t have. They can get support from their own groups, because they are competent enough to seek them out and have their moan/talk about their guilt of moaning/loss of life outside of caring etc. They are not facing a slow lingering death with confusion but with the knowledge of being aware of it happening.
Comment: Is that fair of me? OF COURSE IT’S NOT in fact it is a hideous thing for me to say.
Independence is something most of us fight hard for. Meeting friends outside of the home, choosing our own actions; what to wear, what to say, who to say it to. What this disease does is end all of that but slowly and with the knowledge it is being lost. Fighting hard to keep it can delay it but not stop it. Being aware that you are the cause of your loved one’s change to their lifestyle can bring on the most heart wrenching guilt – sorry I never meant this to happen forgive me. Watching someone you love battling with; trying to come to terms this change, with their future as a carer, again causes guilt.
This is still selfish of me to write this because look..somehow I have still not acknowledged the pain of being a carer. The life you wanted to lead has been diverted to a different path and certainly not one thats easy or pleasant to walk. You want to run away from it, because you know once you take that first step in acknowledging the journey you are about to begin, your life will never be the same.
See, I have done it again – spoken for you without addressing your pain. Someday you will speak for me, guessing what it is I need to say.
What I am trying to say is that, I am scared to read your pain about how emotionally draining it is caring for loved ones, I want to empathise, but struggle to because it is too painful for me to think that I may cause that one day. I would never willingly cause anyone so much suffering but it seems I will. So, if I seem self centred I apologise but right now I cannot cope mentally with how I am going to change your life, the loss you may feel of a loved one or the lost promise of your own active future.
But, I recognise that this is my coping strategy, please forgive me.
Of course I can’t leave it like that because I will also acknowledge that there will be bright times when I say something that will make you laugh that I will be able to join in with that. Times when our love will shine through and be comforting. Times when both of us will feel the best we can that day.
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