‘I struggled with the confusing labyrinth of the social care system’

By Zoe Harris, creator of Remember-I’m-Me Care Charts and the online platform Mycarematters

Geoff and I had been very organised when our children were still young, writing our wills and even preparing powers of attorney. But that didn’t mean we really thought through any of the circumstances where that paperwork might be needed. We did talk a little about what might happen if one of us died, but I don’t think either of us seriously considered any scenarios where we might lose the capacity to make decisions for ourselves.

I ended up being Geoff’s attorney for six years, blundering my way through the confusing labyrinth of the social care system and way out of my depth for the decisions I had to take.

Dementia did that to us. It also shifted my status in the eyes of the system, from wife to carer – a shift I didn’t think about until I had to ask for help, and was never particularly comfortable with. After all, I’d taken a vow to care for Geoff in sickness and in health – he’d have done the same for me, and probably a lot better!

‘The long road to diagnosis’

I have kept a diary for most of my adult life, so I know that in 2004 I was worried enough about the changes in Geoff’s behaviour to go to the local library – the internet certainly existed but it didn’t offer the wealth of information it now does – and see if it might be something to do with Alzheimers. What I read confirmed my suspicions, but I also learned there could be other causes for his periods of severe confusion.

It took six months to persuade Geoff to go to our GP, and to my intense irritation he came away with the reassurance that his ‘minor memory issues’ were just the effects of a cold.

By 2006 even Geoff was admitting that something wasn’t right. This time he did get referred to an older person’s psychiatrist. He did the MMSE test and of course got the maximum score; asking me who the prime minister was just before we went in probably helped!

The illness further increased its grip on Geoff in 2007, when he started going blank for what felt like hours but was probably initially just a few minutes. He’d go silent and when he finally came through it he’d admit that it was like dropping into a totally blank void, not knowing where we were, who I was. He insisted it was stress induced.

He continued to do strange things, laying out clothes on the floor so she doesn’t get cold, but then not being able to explain who ‘she’ was. He started to find his mobile phone too confusing, mixing up real conversations and messages. The hallucinations began, where he’d see children and animals.

Then it turned out he had a bad UTI and I was left totally confused as to how much of his recent behaviour might have been caused by that. Recovering from the UTI he wanted to be helpful and while hoovering managed to chew up the cable and fuse the lights. I am ashamed to say I was not very supportive.

‘Terrifying changes’

Looking back, if I was frightened by what was going on, he must have been terrified. Even his relationship with our daughters was changing. They were having to learn patience, explaining everything slowly and speaking clearly. At 13 and 11 it was not surprising they often lost their cool with him.

It was early 2008 before he got checked out again. By now, he could not find his way from room to room without help; the children had got used to guiding him to the bathroom and anywhere else he wanted to go in the house. He was still desperate to be useful, so things like the sugar bowl in the fridge and the washing draped all over the house instead of on the clothes line became the new normal.

I started accepting odd behaviour as just an ordinary part of day to day life.

And this time he did get a diagnosis: dementia, probably Alzheimer’s Disease. He was prescribed Aricept which seemed to clear some of the fog for a while. And I could confirm to the girls that Daddy had a physical illness that was damaging his brain, somehow a more acceptable concept than thinking his strange behaviour meant he was ‘going mad’.

What happened next: the circumstances that precipitated his rapid decline, the disastrous respite care, Geoff’s final 13 months in a care home and what it taught me in terms of communication, relationships, empathy and respect, is what I’ll be talking about at Community Care Live.