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.

Christmas time

I've been a bit busy, what with Christmas and all, but now it's over, and I can relax, and hopefully get my sleep pattern back on track (after today, of course).

Christmas Day went remarkably well. The plan is usually thus: We all go to church (practically next door to my grandparent's house) - me and my brother then go back to cook and prepare while mum entertains grandparents at their house - they all come to the dinner - we lunch all together - open presents - have a nice cup of tea and some cake - then at about 3pm granny begins fussing about going home - then my grandparents go home at about 3.15pm.

We turned up chez grandparents to find my granny essentially in her gardening clothes, and complaining about not being able to do up the button at the back of her trousers. We said we thought they were on back to front to which she replied "oh, don't you start as well" - this was what my grandad had been telling her. Sadly whenever my grandad points out something like this she thinks he's getting at her, not trying to help like he is. Still, my mum managed to get her sorted out, and church went fine. I did feel sad about her clothes though - she's always been so particular about being smart for church, it shows how much has changed this past year. As my brother said "she can barely dress herself, let alone choose a smart outfit". It's funny how things slowly change, I remember it being referred to as "creeping normalcy" in a very different setting, but it's the same thing. I guess little by little as the brain cells trickle away you get used to the new person you deal with, and with each 'event' you just learn to laugh so you don't cry at how tragic it all is.

This was my 4th (5th?) Christmas lunch, but the first cooked away from my mum's house. Thankfully we are all living in the same town at the moment so the shuttling between properties worked, and my fears about my evil fan-assisted oven were unfounded and lunch was a success. It gave my mum a routing point for my granny, as if there's one thing she does still understand it's the troubles of housekeeping, and sympathy for me cooking my 'first' Christmas lunch helped dispel any anxiety that began.

The day went brilliantly. My granny loved her presents - a horrid twinset from Edinburgh Woollen Mill from my mum and a big cuddly teddy from me and my brother. She must have spent about 10 minutes reading the label of the twinset ("ooh, Woolmark, that's good isn't it?") and absolutely loved the teddy as apparently she's always wanted one. Latest news from them is that the twinset has been largely forgotten and the teddy has been put away so it doesn't get damaged - ho well, we tried! The really good thing is that she does seem to have remembered the day, and remembered it fondly. There's *something* that's making her anxious at the moment though, and we don't know what it is. I hope it doesn't overshadow the day in her memory as she was so happy.

All GPs to get dementia training

All NHS GPs in England are to be trained to spot the early symptoms of dementia, under government plans.

Read the article

All calm on the Western front

Last night I went out to a Christmas show with my mum, brother and other half. It was the first time in a good while my mum hadn't been round to my grandparents of an evening, but so far, so good. I don't want to tempt fate though as last time she skipped a day my granny got her knickers in a right twist (perhaps, circumstances considered, that's not a great term to use) and I got called on my mobile at work - never a good sign. I think it was the product of a brainwave of the Crossroads lady - I went and bought an old shirt and chopped a button off it for her to "mend" (this being something she's always pestered me to give her to do). The first one I did was fine, but the call I got was regarding the second, because "noone's been round to collect it, I waited up last night and noone came, so how do I know you will today? I do these things for people...". There goes another idea to keep her busy and make her feel useful :o(

Apparently the day following the outburst my granny was fine. I suppose that's an up side of dementia - that although some things will linger, not everything that upsets you today will upset you tomorrow. Mercifully you will forget some of the things that make you sad in life, even if you also forget a lot of the things that made you happy.

Did I just make a really big mistake?

In a moment of good-meaning I may possibly have registered for next year's BUPA 10K in London, to raise money for Alzheimer's UK...

This is questionable for a number of reasons:

1. I am asthmatic, and have never been very successful at running - especially on tarmac (it makes my knees hurt!).

2. Although usually quite a fit and healthy person I am currently incredibly unfit, as a result of undertaking office-based work. Because of said office work I have also put on quite a lot of weight, and am a wee bit chubby right now.

3. The run is in May which gives me 5 months to train, but most of those will be cold months, and cold air is the main trigger for my asthma.

4. I am not a very organised person, or dedicated when it comes to exercise. Training could prove problematic.

I signed up though because I knew if I hesitated these reasons would take over, and I wouldn't do it. But I need to get fit, and if there's anyone worth doing it for, it's my granny. If this was 10 years ago she'd be extremely proud - though would probably say I was a loony.

More than anything I want to raise awareness for Alzheimer's and other forms of dementia, which is a fact I strongly believe I will have to refer to when I have pulled muscles and cramps later down the line....

How on earth do you start one of these things?

Hmmmm. Well, my name is Rachel, and I am 25. I live with my brother, and analyse data for a living: yes, I am something of a geek. I have been low of late, and have decided it is high time I start some kind of blog as I am sure that I am not the only one in this boat.

My granny has dementia. I don't know the cause. She doesn't think there's anything wrong, and won't go to the doctor. Up until recently we were really very close, which I understand is something quite unusual - especially for "my generation". I'm in a funny old situation as I'm neither her primary caregiver (my grandad), nor the secondary caregiver (my mum), but still get very involved and probably take on far more emotional responsibility than I should.

Last night I was privy to a rather incredible display of vicious resentment and confusion from my granny, what I understand is called "the catastrophic reaction" in the literature. Convinced that my mum is her hated (late) sister, she let rip about what were obviously some long-held (although vague) resentments, rising from an incident the previous day when she and my granddad had arrived 10 minutes early to my mum's for tea to find an empty house – "We'd been waiting for two hours… I was colder than I'd ever been". She then began ranting about the one remaining carer who comes on a Monday being bossy and making her go out when she didn't want to. I think my mum finally lost her patience and chaos ensued.

I never thought I would have been in the situation where I was trying to calm down an argument between my granny and my mum, having my granny crying on my shoulder after my mum had (albeit briefly) stormed out. The problem is, dementia won't be reasoned with. Every time I tried my usual tactic of changing the subject, she started it all again. The facts were gone, but the feeling remained. My mum, mustering what I can only describe as incredible mettle, apologised profusely for the argument, and took full responsibility for the misunderstanding: "...I'm really sorry. Can we be friends again?". What came from my granny next was what shocked me: "No. I won't. You said some really hurtful things and I'm very upset now. You're always like this - bossy - you always have been."

After that I made my excuses and called my uncle and auntie to please phone my grandparents, in an attempt to calm things down. I don't know if it did. I told my mum we had to go – I just couldn't take any more.

Dementia is so cruel, and in its advanced phases I fear it has a way of baring the very worst parts of a person's personality. I never wanted to see the grandparents I idolised like this, but life happens – I just need to understand it better. I'm hoping this blog will help me explore the subject a bit more...