Mum’s painful memories of Anna’s tragic decline
“WHEN Anna was 36, we all started to see a change in her,” said Christine as she recalled her daughter’s tragic decline.
“The biggest change we saw though, came at Christmas. All the family were here with us and we were sitting watching the grandchildren open their presents. As soon as either of her children had opened a present, Anna grabbed the paper, took the present off them and started to stack them in a pile. The children were obviously upset and couldn’t understand why she was doing this.”
Over the following weeks, Anna’s behaviour continued to spiral.
She became obsessive, but was adamant, that work stress was the cause.
From being a petite size 12, Anna began to gain weight. She was eating excessively and selectively, from pork pies and doughnuts to anything sweet.
Though Anna insisted that nothing was wrong with her, the family’s concerns were growing.
Concerns turned to worry when Christine received a call from Anna’s line manager.
She explained that her daughter’s behaviour was completely out of character, stating that Anna had become a liability in her nursing team.
She also told Christine that if her daughter couldn’t be persuaded to get some help, then there would be no alternative other than to suspend her.
Christine was confused, she said that nobody wanted to blot Anna’s perfect nursing record, but there had to be a reason why her daughter - an experienced and dedicated nurse - had become such a ‘disruptive influence’.
“Her manager continued to tell me of Anna’s behaviours,” Christine recalled. “Walking up to other members of her team who were having sensitive discussions on the phone and demanding their attention, taking her shoes off and skipping round the office, laughing loudly and inappropriately in front of the patients, talking in silly voices, constantly in and out of the toilet where she would bang on the walls - which we eventually discovered this was with her head.
“From being highly organised with all the paperwork, she was now completely disorganised.
“One of the worst things her manager told me was that Anna had lost her compassion. She didn’t seem to care about anyone.”
Christine persuaded her to see her GP. Just as she imagined, Anna was skipping around the surgery, being impatient with the wait and rude to the receptionist.
The doctor advised Anna to take some time off work, which she did, before insisting she had to return.
Only days later, her line manager called Christine again. Her daughter had now become ‘a real liability’, explaining how she raced around the car park screaming and wailing. Trying to control her was horrendous. The next few months were surreal. Anna’s behaviours continued to develop horrendously.
“Clapping, slapping her legs, banging her head, screaming, wailing, obsessive behaviour, complete lack of empathy, eating uncontrollably, being rude, putting non edible things in her mouth.”
The family made the decision to call in a psychiatric crisis team, only every time they visited, Anna was able to control her ‘bizarre’ behaviour until they had gone.
Anti depressants and sleeping tablets failed to help her.
Because no one knew what was wrong with her daughter, the family and Christine struggled to gain any support.
The start of their long-awaited diagnosis was during Anna’s first brain scan which revealed global shrinking of brain tissue.
“Anna was 36, her brain should not be shrinking.”
She was eventually diagnosed with a condition called Pandas which came as a relief to the family.
“I had heard of Pandas, but understood it to be a paediatric condition but the consultant told us there had been some research done into it affecting adults.”
Anna’s treatment commenced, a course of ivi immune drugs while under the care of her parents. But Anna’s condition remained unchanged.
Their increased desperation continued and eight months into her illness, Anna still hadn’t received a diagnosis.
Finally, Anna’s consultant requested that his colleagues in London run a series of tests on her and she was transported by ambulance to London, with her mum beside her.
One week later, a second brain scan was about to confirm the family’s biggest fears.
“As she went into the tunnel, I stroked her legs to keep her calm. I could see the team of doctor and technicians performing the scan.
“All of a sudden, I could see them pointing at the screen, then someone went out and reentered the room with others. They all looked worried, perplexed.
“It was then I knew there was something seriously wrong with Anna.”
She had Behavioural Frontal Temporal Lobe Dementia.
The family were told that due to the high degree of brain shrinkage, compared to the scan taken a few months earlier, Anna’s condition was terminal. She was given between two and 10 years to live.
Christine said: “I sat with Anna as she lay in her bed and the consultant gently told her what she had got.
“She ignored him and buried her head under the pillow. He gently uncovered her head and told her he needed her to repeat what he had said. “She did - word for word, without emotion.” From that day, Anna was transferred back to the same hospital near her home in Burbage.
Her unpredictable behaviours meant that she would have to go into care, to lessen the traumatic impact on her two children.
In November 2012, the family eventually found Anna a care home, 20 miles away from her loved
ones.
Initially, Christine says staff struggled with her daughter’s behaviours, they had never seen anyone like her before.
By June 2013, Anna was on one to one care, 24/7. Her room was stripped bare of its belongings as she would bite or chew them. At first Anna was erratic, running around the unit, screaming, wailing, eating anything she could lay her hands on. She bit the walls, her bed and anything she put her mouth near.
“Everywhere Anna went she left her teeth marks,” said Christine. “Eventually her poor teeth were little more than stumps. She started grinding her teeth so hard that you could hear it yards away. She lost all expression - no smiles, no frowns.
“She became doubly incontinent, then mute. She would roll around the floor, slide off chairs onto the floor, injure herself by scratching at her body. She hated having her head touched.
“She sustained awful bruises from falling. She had periods where she went into a complete unresponsive state for hours, sometimes a whole day.
“As time went by she became calmer and very cuddly. She would hold her hand out to anyone who would take it. She would sleep cuddled up to anyone who was visiting or one of her carers. She slept more than she was awake. Weight had dropped off her, she often choked on food.”
Three weeks before Anna’s death, the family called in palliative care and Christine moved in to be with her daughter, five days before she died.
She said: “Anna was never alone. Her husband or other family member would come and I would take a break.
“Because she was so young and fit, other than for her brain, death did not come quickly or easily.
“The day we watched her face relax, her expression softened and she looked beautiful and peaceful. We knew that then she was free from this, the ugly disease. She was just 42.”