The 'C' Word VI: Crisis

Posted by Jenni Remnant and Libby Morrison

The Age UK Care in Crisis Report 2014 highlights the problem in Health and Social Care across the country with cuts in real terms; most councils are now only covering critical care criteria, so that those people with moderate needs will not be entitled to help.

Newspaper headlines shout out about the looming national crisis in care and public health for the elderly, and particularly the ‘ticking time-bomb’ of dementia. The number of people living with dementia looks set to rise year on year. How will our health and social care system cope with this – is crisis inevitable?

What perhaps isn’t highlighted is how, as with any crisis, it is a collection of individual experiences of people living with dementia and their carers.


An aged but blank piece of paper - having all the experience and history, but none of the words - because that's
 what dementia and Alzheimer's patients can seem like. It's there in the book, but you can't read it off the page.
 

The following diary extract is by someone recently caring for her elderly parents. Her mum was the main carer for her dad who was in late stages of dementia. Her mum had refused most offers of help as he was ‘HER husband’ and it was ‘HER job’ to care for him. She had become increasingly tired, and confused herself. The extract covers one weekend in crisis.

Friday

4.30pm
I went round to Mum and Dads to bring them some cakes I had made. I was met with a scene of chaos. Mum had packed up suitcases and bags which were stacked up in the living room. "What are you doing Mum?" She replied: "We don’t like this house, we are going back to our old one." I tried to explain that she couldn’t go back to her old house; they had sold it 7 years ago. There were pills in different bags, piles of notes and coins, clothes, rubbish etc. Dad was agitated of course, pacing up and down and making his ‘um um’ sound. Oh god what to do – Jessie is due back from school, the dog needs walked, I have a conference to go to tomorrow – I unpack all the bags and put everything away, make them tea and toast and promise to come back. Beg Mum not to leave the house with Dad. Run home make tea for Jessie, and walk the dog.

Dad once led a campaign to save the local library – and succeeded.

6.30pm
She's packed all the bags again and says her and Dad are leaving the house. She has drunk some whisky and possibly taken her sleeping pill. If I phone the GP or 999 they will probably take her to hospital – what then for Dad? He needs 24 hour care – where would he go? I have no space in my house and I need to care for Jessie and (just as an afterthought) go to work tomorrow! How can I do that – how can I not? If I don’t go into work I won’t get paid (care work – poor terms and conditions – ironic!). But the thought of Dad getting sent to any old place in an emergency, scared and alone, I can’t do it. Maybe if I can get them both to bed and to sleep, Mum might be better in the morning. Phone my sister and aunt to see if they can help tomorrow while I go to work. Ask my friend if Jessie can stay over with them tonight. Go to make a cup of tea – there is urine in the cutlery drawer – Dad has taken to peeing randomly in unexpected places. Clean out drawer. Make tea. Dad makes his ‘um um’ noise rhythmically and noisily – it drives me mad.

Dad was a school governor. He fund raised and campaigned to get new facilities and buildings for the local school.

10pm
They are both in bed (for how long is anyone’s guess). I make up a bed on the sofa and write this diary. I can’t sleep, although I am very tired.

3am
Dad is in the kitchen – peeing into a pie dish in which my aunt had brought them dinner yesterday. I clean up and lead him back to bed. He doesn’t object (thankfully).

Dad used to play tennis and rugby and was a big football fan.

Saturday

9am
My aunt arrives so I can go to work. Mum is a little better, seems less confused and has slept well. I hide the whisky before I leave. My sister and aunt go in to see them 3 times today. We have agreed to try and manage the situation until Monday, when we have a pre-arranged meeting with Social Services anyway as problems have been mounting over the last few months.

Dad set up and ran community education classes for local people.

6pm
Things are a little calmer tonight. Mum is clearly still confused but more reasonable. I cook them both tea. My aunt phones for an update. She says: "I didn’t think my toad-in-the-hole was that bad" when I recount the story of the pee in the pie dish!! We both laugh at that. But then I find myself in floods of tears – go upstairs quickly so they can’t see.

Dad has a glass plate which was presented to him for donating blood 75 times – there is a little certificate too.

9pm
I have given them dinner and we have watched a bit of telly. Mum doesn’t seem to know where anything is in the kitchen. Should we phone the doctor anyway? They will try and get us to bring her in to see them (I know of old). But that means bringing Dad and that means…….. oh let's leave it until tomorrow.

Dad loves singing and all sorts of music. He was once a choir boy in a big church in Edinburgh.


This is only the briefest of insights into the personal dimension of the impending dementia crisis, but in this limited glimpse at the nuanced and emotive narrative, it is already painfully obvious how much of a challenge public health professionals and researchers, and the health and social care structures in the UK have on their hands.