Posted by Tim Barber at 23/08/2012 14:17:50
My last post covered what I saw as Stage 2 “still independent but starting to need help” and this time I’m going to summarise what behaviour changes I noticed at Stage 3 “things are starting to get noticeably worse”.
Mum was still not really putting herself in massive danger but my brother and I found we needed more and more external help. Most of the challenges were still behavioural and more weird than dangerous, but mum’s physical health worsened, in some part down to the dementia.
Cooking was one of the big problems and we started to notice mum was losing weight. She would forget to eat but even when she was hungry she had forgotten how to cook.
One of the strange things I remember was arriving, after a two and a half hour drive, to find mum steaming a piece of broccoli on a fork over a steaming kettle. She certainly became good at adapting to get by.
We even stocked up the fridge with ready made meals, but mum became also unable to use the microwave.
On another visit, I found mum putting the contents of a leftover tin of tuna in her cup of tea. When I asked “why she was doing that?” I was met with the response – “Because I like it!” What could I say, it was strange but it wasn’t going to kill her. Again she was adapting, combining tea and tuna, two things she liked, into a snack. Not sure it will catch on but you never know!
During this stage, the house started to become more untidy and cleanliness, which had always been high on mum’s agenda, started becoming less important. We noticed an odour in the house, and mum’s clothes and personal hygiene were also in decline.
Mum could still work the washing machine, but she would wash and dry clothes then put them straight back in the washing machine, without wearing them.
Mum had been on Aricept to help with the dementia, but was regularly forgetting to take these tablets, as well as other medication for problems with eczema and cellulitis infections in her legs. We bought pill boxes with days of the week, battery powered weekly pill boxes with alarms – but these didn’t work and ended up with mum going to a neighbour thinking a fire alarm had gone off.
We realised we needed help but when we called social services, mum put on such an act of normality, telling the social worker about all the friends she had round for dinner (even though she hadn’t entertained for years), that the social worker assessed my mum as not needing help.
So I found a local firm of private nurses and paid them to call in for an hour a day, to prepare mum a meal, remind her to take her medication and do some basic cleaning/washing.
This helped for a while but with mum being massively independent, she would sometimes not let the nurses in. We began to realised we needed to try again to get social services involved.
I’ll cover this in my next post – where I’ll detail what I see as Stage 4 – where mum “started to put herself in danger” and we knew some tougher decisions were needed.