My daughter Anna was 36 when she started to exhibit strange, inexplicable behaviors, both at work and at home. Anna was a clinical trials research nurse in a busy hospital. She was also a wife, and a mum to two young sons.
Her behaviors escalated to the point where it was not safe for her to be at home. She would clap, bang her head, whistle, wail, take off her shoes and run like a child in the hospital corridors, eat any food she could lay her hands on, bite and chew inappropriately. Worse than that was her complete lack of empathy and inhibition. She was forced to give up her job and had to come and live with us, her parents.
She never acknowledged there was anything wrong, and managed to maintain composure in front of the doctors. Even though I tried to explain what was happening, they would not listen to me. She was treated for depression and stress. As her behaviors worsened she was admitted to hospitals, and over the next year she bounced between psychiatric and neurological care. No one could say what was wrong with her.
At one point, we were given a diagnosis and told it was curable. Anna was given a concoction of drugs. However, our relief quickly turned to despair when the treatment failed and she was as bad as ever. Time was marching on and all we could see was deterioration. We were losing Anna.
Towards the end of that year, we managed to get her transferred to a neurological hospital. I traveled with her in the ambulance and she had to be sedated for the journey. She was given a single room where she spent most of her time in the dark.
All the time Anna insisted she was fine, despite displaying every sign that she was not. She resisted all attempts to talk to anyone and was uncooperative whenever examined. After a few days, Anna went for her second brain scan. They could not sedate her as this would have colored the scan reading, so I was allowed in the room with her.
As she was fed into the tunnel, I was just able to stroke her legs to try and keep her calm. I could see the technicians behind the screen as they operated the equipment. Suddenly I was aware that more people were being called into the scan room. They were looking intently at the readings. I knew then that there was something seriously wrong with my daughter.
Anna had a rare type of dementia called behavioural frontotemporal lobe dementia – BvFTD for short. It used to be known as Pick’s disease. We were told that the illness was life-limiting and that she had between two and 10 years left to live.
Anna was transferred to a care home that dealt with neurological illnesses. But before long, she became a danger to herself and others. Eventually her room was stripped of virtually everything so that she could not hurt herself, and she had one-to-one care 24 / 7.
Within two years, Anna was mute and doubly incontinent. Her biting and chewing progressed until there were marks all down the wall, and along surfaces where she chewed. Her teeth were little more than stumps. She started choking on food and losing weight.
Anna was no longer able to swallow her medication so it had to be administered subcutaneously. In October 2017, aged just 42, she lapsed into semi-consciousness. Just when Anna should have been in the prime of her life, she died.
Throughout Anna’s illness, I went through so many emotions. Mainly, I was angry – angry at the time it took to make a diagnosis, angry that no one listened to me and that I, and the rest of her family, had to fight for every bit of help.
As a Macmillan nurse, I am used to deal with all sorts of life-limiting illnesses and the grief and distress that accompany them, but there is so much help available to people with cancer. Also, most people affected by cancer and other conditions are able to express their feelings and prepare themselves and their families for the inevitable.
Anna lost the ability to function virtually from the day she was diagnosed. We eventually found support throughthe Laura Center, which provides counseling to bereaved parents and children. Without their help I doubt any of us would have come through this. I believe the reason why there is so little support is because people do not understand this illness. We need to increase awareness.
As yet there is no cure for this cruel disease. It continues to devastate the lives of those affected by it. If I could get just one message across to doctors, it would be that they should listen to the family. They are the ones who know what is happening. If we had been listened to it would not have changed the inevitable outcome, but we would have been spared the awful uncertainty that comes with the unknown.
To find out more, visitYoung Dementia UK
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