Let’s start in 2000
Jo is 52 and a doctor with the National Blood Service. She is mum to two grown-up sons. She enjoys weaving, spinning, textiles, gardening and keeping chickens.
In eight years’ time we retire and we have lots of plans.
Fast forward to 2004
Jo is struggling to use the computer and for the first time in 30 years she can’t complete her tax return. She drives to a meeting in Warwick and takes the wrong turning on the M40. She phones me from Nottingham having driven 100 miles up the M1. She has no idea why she did it.
Jo’s GP signs her off for two weeks with stress-related depression and puts her on Prozac. For a while she seems happier and better organised.
Now we’re into 2005
Jo spends two hours searching for the blood donor session she is supposed to attend. She eventually gives up and begins the drive home at 6.00pm. It’s 20 miles away but she doesn’t get in until three in the morning.
Jo decides to see a neurologist. She has some tests and the consultant cannot believe the results. She cannot draw a clock face and fails catastrophically on all the spatial skill tests. Yet this is all at variance with her verbal and all apparent other skills. She has an MRI scan which is normal. The provisional diagnosis is depressive pseudo-dementia.
As her difficulties continue, Jo is referred to an old age psychiatrist, Dr Oppenheimer. After taking a comprehensive history she tells us she believes Jo has young onset dementia, possibly Alzheimers, possibly vascular.
Life changes again in 2006
Jo starts to have delusions. She tells me that our son has married her best friend. She thinks I’m trying to poison her and she becomes violent towards me. She spends a couple of months on a Section 2 in hospital and with treatment her delusions pretty much disappear. When she is discharged I take partial retirement so I can spend more time with her.
One evening, before I get home from work, Jo disappears from the house in the dark leaving doors open and lights on. After checking with friends and neighbours, I call the police and they eventually find her four miles from home.
I can’t go to work after that because I can’t leave her on her own. I hide the car keys and lock us in the house together. Sadly the delusions and aggression return and I can’t cope with her at home. She is re-admitted to hospital on a Section 3 and is an in-patient for six months until she is well enough to come home.
Jo can’t dress or wash herself, or go to the loo unaided. She can’t remember which room in the house is which.
Jo enters a year’s drug trial for Memantine and she seems more alert, less stressed, smiles a lot more and is an easier friendlier person to have around. Just occasionally there are flashes of the old Jo which come through. She continues with Memantine after the trial.
She is doubly incontinent now. Her short term recall is very poor and she doesn’t know what she did yesterday let alone in the morning. She has quite forgotten her previous career and most of her past life with the exception of odd episodes from her school days.
Where we are now
Jo still lives at home with me as her full time carer. She goes to day centres twice a week, attends music therapy which she loves, and goes out with a YoungDementia UK support worker. Compared to earlier years, she is placid and does not need antipsychotics any more. Photographs or images on the TV are meaningless to her. She is almost without speech, can move on her own but slowly. She scarcely engages at all with people or things in her environment. She goes to residential respite care from time to time so that I can get a break.