“Joyce had been a widow for 25 years, and didn’t have any children. My brother, Bob, lived in Kent and I was living in Birmingham, we were the only relatives left to look after her in Essex, which was a two and a half hour drive away.”
John and his brother were visiting Joyce twice a week.
"When you’re responsible for someone with dementia, it creeps on you without you knowing. Looking back I can see it was happening, but at the time it was not until she became dangerous to herself and others, that I was really made aware of it.”
As well as becoming dangerous, Joyce was affecting her neighbours by putting them under extreme pressure. She would knock on her neighbours’ door whatever time of day or night and if they did not answer, would bang on the windows. If John or his brother didn’t answer their phones, she would pick a number out of the phonebook and ring whoever she could. It was not unusual for her to phone her two nephews up to twenty times a day. Self neglect was becoming painfully obvious and her health was deteriorating rapidly.
In John’s experience, no-one was prepared to admit the extent of his aunt’s condition and as a result he found it difficult to get help from the authorities.
“Because you have to get pushy with authorities, it makes phone calls really difficult, you feel as though you’re being looked at in the wrong light, I felt they were judging me negatively. Without Power of Attorney or an Order from the Court of Protection no one will take you seriously and many institutions, like the banks, will not even talk to you.”
John reflects on how it affected his home life.
“It was a very hard situation to be in, the sheer time of caring puts you under a lot of pressure. I was trying to lead a normal life with my own family, whilst being in despair of getting nowhere with Joyce and she really was a sweet, dear lady who I was very close to. Just seeing her wasting away and not being able to help was turning me into a nervous wreck.”
Help from Social Services was desperately needed but without a recommendation from Joyce's GP they would not get involved. Finally after many months of persistence, John persuaded the GP to do a report and Social Services came on board. They, however, prefer to give their clients every chance to stay in their homes as long as possible.
One of the tests they gave Joyce was to cook a microwave meal which they had to abort before Joyce scalded herself. Meals on Wheels, old peoples clubs and daily nurse visits to administer pills were put in place. Joyce would put the meals in the dustbin, she could not face meeting new people in a club atmosphere and hated the nurses who “intruded” all the time. Things were going from bad to worse and provided no relief to Joyce, John or Bob.
In the spring of 2007 help finally arrived when Joyce was admitted to hospital for her angina.
“The hospital arranged a meeting with senior people from Social Services and Mental Health and we all sat around a table (including Joyce) to discuss the problem. Nobody had the slightest doubt that Joyce needed proper care and Joyce found the strength to say in front of them all that she just wanted to be with other people of her age.”
Six weeks later she was offered a place in a Dementia Home and was then able to start finding some pleasure again from her life. Her health improved and John found that he became even closer to Joyce as he was freer to enjoy her company and not worrying about her welfare.
“Joyce and I became ‘mates’ once she was properly cared for - she had some great stories to tell, including detailed recollections of her life in London 70 years before. There’s no comparison between the safety of the care home and the stress and anxiety that went before.”
In hindsight, John realised that his and the GP’s lack of experience with recognising Dementia meant that matters were delayed when it came to arranging care for Joyce.
“A lot of it was born from ignorance, if I had known what to do, what pressure points to push, I could have dealt with the situation a lot better.”
“My advice to anyone in a similar position would be to set up a Power of Attorney well before the onslaught of dementia or any age related problem. However if, as in our case, events overtake you, you have to push for The Mental Health Authority to agree with the dementia diagnosis and then you can apply to The Court of Protection to become its “Deputy”. This gives you the power to act on health and financial issues, albeit under their watchful eye."
Joyce died peacefully after 3 years of happiness at the home.