Questions about dementia

Ok, so it's been a while, but I'm going to post some messages I've been writing to a lovely lady on the joyful subject of dementia, as they cover a load of stuff...

How long ago was your Granny diagnosed?

I'm not entirely sure, but I think it was a couple of years ago now, in about 2005. I wasn't that involved at this point, I think my mum was trying to protect me from it. I do know that her behaviour was getting quite bizarre well before this, and also that a diagnosis was difficult to get as my granny didn't think there was anything wrong, and got extremely upset at my mum when they finally did get a diagnosis as she was "tricked".

What living situation is she in?

She is thankfully still living in her home with my grandad. It's a large detached house in a quiet road, and they've been living there for about the last 50 years. However, my granny fairly regularly refuses to believe it's her house and wants "to go home" - a classic symptom I know. It's always been spotless (my grandparents having the classic co-dependent relationship where my grandad worked and my granny was a housewife) but recently it's been getting more and more messy. My granny will move things, and forget where she's put them (then blame my grandad). There are stacks of papers everywhere: bills, newspapers, leaflets that have come through the door, family photo's - all jumbled up together. It's always been my granny who kept it tidy, but when she was in hospital recently (and it was just my grandad at home) it was far tidier (who knew?!).

The really big problem is that my grandad wants to keep her at home as long as possible, but won't accept outside help. After she came back from hospital (she was admitted after collapsing from dehydration) they had a nurse come in the morning and evening, but that soon went - "they were all swarming round me, pushing me around" "one asked if I needed help washing my bottom - can you imagine!". They briefly went to a day centre one day a week, but that stopped after my granny said she didn't like it - "they treated me like a baby" (possibly true, who knows).

At present they are paying the cleaner a bit extra to stay longer - let my granny "help" and then have a cup of tea with her. They also have a lovely lady from Crossroads come round one afternoon a week, but after my granny's outburst the other day, I don't know if that will continue... In essence they stay home every day, and my granny goes between being "bored" and wanting a job, and wishing that all these people would leave her alone. The only help they seem to want is my mum, me, and my brother - and we all work full time in fairly stressful jobs.

Did you know anything about the illness beforehand?

Not really. I had watched Iris, about Iris Murdoch's steady decline into Alzheimer's, and knew a bit about the brain from studying psychology and biology at A level. But if I'm honest I only yesterday drew the link that Alzheimer's is one of many causes of dementia, albeit it the most common cause.

I'd also known a neighbour my granny used to visit who the last time I went round kept asking me the same questions over and over. It scared me at the time (I was about 12), but in hindsight, at least she seemed happy. I also knew the term "demented" although used comically (e.g. a 'demented' hamster) was actually something serious, and offensive, though my facts were vague. I knew some old people got forgetful, and that your brain slowly deteriorates as you get older, and that the two were probably linked. I never knew (and could never have guessed) how different "being forgetful" and "having dementia" were.

How do you find the illness affects her personality and how does this affect your feelings towards her?

The biggest change is just how aggressive she is now. Two facts I think are important are that 1. She is the youngest of four children (three girls and a boy) 2. She has ALWAYS been the one in charge of our family - organising the shopping, decorating, where people are, family events etc. She always knew where everyone was, what they were doing, where they were going. So now I think she's scared - she can't remember what job it is I do, or whether I'm me or my auntie, or how old she is, or where she lives... so it comes out as aggression. But she WILL not be the one who's wrong - it MUST be someone else. She doesn't have the "am I losing my mind?" thing I think a lot of dementia sufferers have, but rather "Why is everyone making my life so difficult?". She's said some really hurtful things, mostly to my mum who she thinks is her hated (late) sister "Oh - you again. What do you want?" "You've always been like this - bossing me around" and she won't accept any responsibility, calling people liars "I never! You're such a LIAR!" - something she would never had done previously.

It makes me sad that underneath my granny can be so horrid. The other day there was a massive row, and although not really my mum's fault, for an easy life she took responsibility and laid on a truly incredible apology. She asked my granny at the end "Friends again?" to which my granny replied "No". Apparently this is how it has always been between them though - my granny lays on the guilt, and my mum does the running. My mum will apologise, and my granny will just continue laying on the guilt - "I'm really upset now". I saw it the other day during the row - I had gone upstairs to avoid the argument (I can't stand arguments) and cry. When my mum realised where I was and why, she tried getting my granny to comfort me as a distraction. My granny lead with "Come on down lovie, I've got enough to deal with down here without you being upset too". Hmmm.