One of the main obstacles to getting a diagnosis of dementia for mum was her utter refusal to accept there was a problem or to discuss it in any way (read our full story).
Mum absolutely refused to take a memory test, which is what the doctor was insisting needed to happen, so we were stuck in a ‘catch 22’ situation. We eventually managed to get mum to agree to the test by using good old fashioned emotional blackmail, which we hated doing but didn’t feel we had much choice, as by now she was struggling with some of the most basic day to day tasks.
Imagine our surprise and mum’s elation when we were told that she had passed the test and the doctor concluded that mum was depressed. Although we didn’t know it at the time mum was eventually diagnosed with dementia with Lewy bodies where memory is largely intact in the earlier stages of the disease, which is why I believe she managed to pass.
So we struggled on, with mum more adamant then ever there wasn’t a problem. But there came a point where we could ignore it no longer so I made some more calls to the doctor who just kept saying she needed to take another memory test.
Eventually I booked an appointment for myself but once there ambushed him about mum. When he once again raised the issue of a memory test I asked him what the next steps would be if she had taken and failed the test. He said he would then refer mum to a specialist but couldn’t because he wasn’t satisfied there was a problem. Following my refusal to leave the surgery until he agreed to a referral he reluctantly agreed that if I could get mum to an appointment with him he would ask some general questions to try and assess her.
The appointment that led to the diagnosis of dementia
And so in early 2013 we told mum she needed to visit the surgery for some blood test result. I went with her and the doctor casually started to ask her some general questions.
Doctor – “Can you tell me what day it is?”
Mum – “Tuesday” (which was correct)
Doctor – “Date?”
Mum – “18th” (correct)
Doctor – “Month?”
Mum – “January” (correct)
At this point the doctor looked at me as if to say “I told you there wasn’t a problem and I am considering reporting you for elder abuse”
I returned a look to say “I am telling you there is a problem and if you continue she will slip up because she can’t maintain this for long”.
And so with an exaggerated sigh he said “Year?”
Mum – “erm, I’m not sure”
Doctor – “As it is a new year it will be understandable if you are out by a year”
Mum – “No sorry I don’t know”
After this she completely fell apart and couldn’t tell him what she had eaten for dinner 30 mins earlier. Mum looked so sad and small that day and I remember feeling both relief and deep sadness
But we got the referral, we got the diagnosis (incorrectly at first), we got the medication and we got the support of a consultant psychiatrist, a community psychiatric nurse (CPN) and an approved social worker (ASW) all of which provided invaluable support over the coming months until mum was hospitalised and then placed in a care home.