New here - really desperate - need advice!!

[Jim T]

hello all - i need some advice from people who have already been through this nightmare!

My mother (74), who has always been incredibly sharp mentally and completely in control of her own life, started to show signs of severe paranoia a couple of weeks ago - people were coming to take her away, people were laughing at her on TV, food tastes wrong, people had been in the house, etc. She was incredibly upset.

After a lot of struggle, I got her admitted to hospital. She is a diabetic with low blood sugar and has recently had a urinary infection.

Since hospital admission earlier this week, she has been diagnosed with small vessel disease (a form of vascular dementia, I think). I spoke to her consultant on the phone twice, and he has made it clear that although he isn't ready to blame all her problems on small vessel disease, mum is unlikely to return to the person she was a fortnight ago. He has told me that he isn't ready to use the word dementia in her diagnosis, but what else could small vessel disease mean?

Mum has always been active, but has always been prone to slight paranoia, mainly taking offence easily if she thinks people are talking about her (as a family we have always thought this was due to the fact that she has worn a hearing aid since she was a little girls and fears that she is missing parts of conversations and therefore seeming foolish).

My mum's short-term and long-term memory are fully intact. She can remember what happened five minutes ago and what happened ten years ago. Even now she is in hospital, she is arranging a seaside trip for twenty of her friends. It is simply a fact that her paranoia has become a million times worse and she is unable to get it under control or reason her way out of it. As her memory is fully intact, my family is wondering whether she might not just have had a nervous breakdown. Whilst this would be dreadful, at least it is treatable.

Her consultant has had a psychiatist assess her, but I'm worried that he is just going to assess her as someone with vascular dementia, rather than as someone who is paranoid. I'd like them to explore the possibility that she has two separate issues. Will they do this automatically or should I make a point of demanding it?

I feel that I need to be really strong at the moment. I'm the only one who can protect mum's interests, but at the moment I am utterly clueless. I'd appreciate anyone telling me about similar experiences or anyone who can offer me advice?

 

[jenniferpa]

Hi and welcome to Talking Point.

My feeling is that it would be a very good idea to express your concerns in the appropriate quarter. I don't think it is wise to take anything for granted, although I suspect that if she was given an MMSE (the standard screening test) she would score at a high level. With an intact short term memory I can't say it sounds like a common presentation of dementia but with over 100 different forms of dementia, it is not to say it isn't, of course. In fact, your problem might be that if she scores at a high level they may assume it isn't dementia when it might be.

I don't know whether you've see this http://jnnp.bmj.com/cgi/content/abstract/76/8/1140. MMSE is described as quite non-specific when it comes to CSVD.

My mother's dementia was vascular (stroke induced) but she didn't exhibit paranoia thank goodness so I don't have any personal experience. Hopefully tomorrow you'll get more responses.

 

[Grannie G]

Hello Jim

Is your mother`s diabetes well controlled?
I discovered through our own experience that poor control of Glucose levels can increase confusion, and although my husband`s levels had been registering as `not too bad` he did have a severe incident of paranoia and has had several lesser incidents.
The difference is, my husband has a short term memory of seconds.

 

[Skye]

Hi Jim, can I welcome you to TP too?

As Jennifer says, there are over 100 forms of dementia, and though Alzheimer's is the most common, there are infinite variations in symptoms.

My husband John was initially diagnosed as AD, because he could not remember the names of people or objects. The diagnosis was later changed to PPA, a form of dementia where the language centre of the brain is first affected. In fact he had no memory loss until very late on in his illness.

I'd push for an mmse, though your mum may score highly, areas of deficiency may point to a clearer diagnosis.

You could also push for a CAT scan, which would show areas of damage.

It's also worth checking the UTI. John had no behavioural problems or paranoia until he developed a UTI, which had a devastation effect on him. If your mum was only prescribed generic antibiotics, the infection may still be there. Ask for her urine to be cultured to check for this.

I hope you can get some satisfaction. This disease is hard enough, without having to struggle for diagnosis.

 

[foxhound]

I would say it would be very worthwhile pushing for all other possible causes to be explored.

I'm sure the medics have done stuff like check lithium levels (the ages are a bit different, but my mother's low-level bi-polar erupted more or less overnight into major agitation and delusions when she was in her late 60's - brought down by anti-psychotics and subsequently reasonably well controlled).

Now she has a diagnosis of VAD as well, but I am often unsure whether a particular bit of battiness is due to the VAD or the bi-polar (or the legacy of a four foot vertical fall in 2000 - but that's another story!)

Good luck.