No one can ever know what it feels like to watch the person you love, the one that bounced you on their knee, and wiped away your tears, slip away from you bit by bit, unless they’ve walked this road..the truth of Dementia is that every time a bit of them disappears, a little bit of you does too. The moment of a dementia diagnosis, the grieving process begins, and whilst you smile and tell everyone that every second counts, and of course it does, you start to loathe and detest this awful disease that is slowly taking your loved one away from you.
The true cost to us all is unknown, the emotional cost is huge, beyond measure, but so are the hidden costs, your health, finances, and most of all the heart-wrenching cost of grieving for a very long time. I feel like I have travelled this journey for a very long and tiring time, never sure what the next bend will bring.
Some days you wake up thinking that you just can’t live another ‘groundhog day’ existence, but you do, you get up and go through the motions every day, never quite knowing if today will be a good day or a day where things will be a little bit worse. At night when you fall into bed you are grateful for making it through, for making it through another day of futile hope, because you know, that each and every day your loved one gets just a little bit worse, and you know just how much worse it can get, and it terrifies you!
You want to scream and shout, and sometimes you find a place where you can do just that, and then you smile again. You present to the world the face they want to see, the one where you are strong and positive because no one really wants to see the other. And then it comes..they slowly back away, those people who once cared and said they would be there until the end, but step away they do! It’s all too much for them you see, the reality of just who you have become, the carer of a person living with dementia. I get through, but at a cost, I sometimes wonder if I’ll ever be truly me again, whether I’ll ever feel real joy and laughter once again, I’m told I will!
The lives I’ve lived seem a million miles away, sometimes it feels like I’m in a cocoon, with life happening around me in a muffled silence, the kind you get when your ears are blocked with water, a muffled silence where the only sounds you hear are your own…
I want to hold her tight and tell her that everything is alright, I do, but I know it’s a lie, it’s not alright, it’s cruel, it’s wicked and it feels so unfair.
Today she asked me if I was happy, I died a little inside. I asked her if she was, she said she was, and just for a moment, I smiled.
But for now I paste on my smile and take another step forward into hope, because ‘it is as it is’, and it’s all we have…