Professor Nick Fox, Dementia Research Centre, UCL Institute of Neurology, gave a
fascinating talk to the members on 13 August when the topic of the MembersMeet was
dementia. The slides from his presentation are available to view. Professor Fox’s talk
was followed by a personal and moving account from Geoffrey Rivett, patient member,
whose wife Barbara suffers from advanced dementia.
Barbara and Geoffrey’s story:
“Barbara used to be a smart bright woman, having worked her way up to a post in the
Department of Health where they met. Her onset of dementia was slow and I didn’t
recognise the symptoms for almost 20 years. She had been very energetic and
innovative but in retirement I was doing most of the housekeeping and financial affairs
as Barbara was becoming increasingly forgetful. I was due to meet her one lunchtime,
but she didn’t turn up and I should have realised it then. She could no longer
understand her bank statements, whereas previously she had run the home, and was
unable to learn new ways of doing things.
In her job in 1970 she was the only nurse in the country who could programme in Cobal
(a computer language of the time) but in retirement she couldn’t even send an email.
She became unable to follow recipes though her childhood days in Devon were vivid.
When it came to the shopping, Barbara would buy what she thought she wanted,
whereas I would buy what we needed, constantly having to keep one eye on where she
was in the shop so she didn’t wander off.
Over time she got worse and had paranoid thoughts such as people coming into the
house and she no longer felt safe and secure. She also thought there were two
‘Geoffreys’ and had no concept of time from when she had last seen me. How does
one learn to cope with the steady downward track? Now, after eight years in care,
Barbara has bowel problems and can no longer speak.
The time came when I realised I was no longer the right person to handle the situation
24/7 and the only option was for her to be cared for in a home. The social services and
a psychiatrist with experience of old age were incredibly helpful. We had one last coach
holiday together when we visited many countries in 10 days! All I had to do was keep
her safe, while the tour arranged everything. Feelings of guilt are easy to have, and one
finds out who one’s true friends are, but you have to have the right people to do the
caring.
Barbara has been in a home that specialises in dementia, of which there are few, for
eight years. I have the greatest respect for the kind staff and those who give their life
for this type of care.
It’s been a difficult journey for us both. The psychiatrist told me that there are always
two patients in this type of situation. I had difficulties dealing with the legalities and the
Court of Protection, who seemed to see me as a potentially predatory relative rather
than a loving husband. In the end I transferred responsibilities to a solicitor as it was
possible I might predecease my wife, so that was for the best.
Carers have somehow to survive and get on with life. I would like to pay my respects to
social services, psychiatrists and all involved in Barbara’s care.”
Geoffrey Rivett, August 2014