In the years following the accident, the changes in Jayne’s behaviour started to become more significant. I took her to the doctor, but she didn’t want to go to the Memory Clinic as she wouldn’t accept that something was wrong. She was only 57 and I didn’t even consider that it could be dementia.
Jayne started having really vivid dreams, and on reflection, they were probably hallucinations. She would cry because she couldn’t change the channel on the television and once tried to get into the house using the remote control.
By 2018, Jayne thought I was an imposter, and she wouldn’t speak to me. I later learned that Jayne had Capgras syndrome, which is when someone believes their loved one has been replaced with an identical stranger. Jayne recognised my face, but she didn’t believe that I was Rob. That was incredibly difficult for me.
Jayne on holiday in Provence, 2010
Route to diagnosis
Later that year, Jayne started fainting and she was admitted to hospital for three weeks. She saw a consultant neurologist who discharged her with a neurological disorder under investigation. They told us that the condition was likely to be treatable and gave Jayne some epilepsy medication. I wasn’t convinced and suspected there was more to it.
I picked up some literature on dementia in the hospital and that is when I first became aware of Dementia UK. I found the information on the charity’s website so useful, and I was convinced from that point on that Jayne had Lewy body dementia.
I called the Admiral Nurse Dementia Helpline in 2019 when Jayne’s hallucinations were getting really bad. The nurse gave me some great practical advice to help me care for Jayne. I am so grateful for the support I received – without it, I wouldn’t have known what to do.