Dementia is a battle and it is a battle that no one should have to fight alone. It is a battle that will rip your heart out because it is a battle you can never win. But Mum, I hope you know that we fought your battle, step by painful step, by your side until the very end.
In the beginning, it sometimes felt that we were on opposing sides. You battled to ignore the signs and refused to visit the doctor, we battled to get the diagnosis you so desperately wanted to avoid. You battled to keep control of ever-decreasing aspects of your life, such as your medication, while we took over when it seemed beyond you. But I want you to know that our intentions were good even if our approach, in retrospect, left you feeling out of control, worthless and depressed.
When you were anxious and upset, we battled to get support. So many calls to the appointed community psychiatric nurse and so many home visits. Finally, you were hospitalised so they could get your medication right in a safe and secure environment. You hated it but it needed to happen because finally the anxiety and distress evaporated and we once again joined forces.
When you went into a care home we battled relentlessly to make sure it was the right one for you. We pushed back when social services had a view which one would be best – because we knew you, they didn’t.
In the care home, we battled to make sure that you received the best possible care. When we had told them that you could no longer manage sausages, and arrived to find sausages on your plate, we told them again and again with ever-increasing exasperation, until our very arrival sent staff scurrying off to check. We made sure that they were aware of how scared you were of doctors and hospitals so that they would never think of admitting you until they had spoken to a family member. We made sure that you received a visit most days, feeding back any aspects of your care we were unhappy with.
We battled to make sure that people remembered the person you were and value the person you had become. No longer able to fight for your family in the way you once had, but still fiercely loyal, warm and funny.
We battled until the very end, making sure that in the last few days you were as comfortable as possible. Those last few days were so exhausting and distressing and we did what we thought was best. But I now feel we could have done more and that is an internal battle that I live with every day.
And then you were gone and the battle was over and I felt lost and adrift. I struggled to let go and move on and so I decided to write our story to raise awareness about dementia with Lewy bodies. The disease I hate, the disease that affects so many people. And so the battle continues. I continue to fight for you and for me and for everyone facing Lewy body.
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