28 days later

Regular readers of this blog may have noticed a hiatus in my posts over the last few months. This is because, a day after publishing the last one, I exchanged contracts on the sale of my flat in London and began the three-month countdown to my relocation to the Midlands.

Apart from tying up loose ends at the office during my two-month notice period and dealing with 101 moving-related tasks, I also had to secure a new job, find a property to rent and arrange farewell meet-ups with a dozen different sets of friends. Something had to give and, sadly, that something was my writing.

Somehow everything fell into place and I left London at the end of September, moved into my new home a week later, and started a new part-time job a fortnight after that.

In the middle of all of this, however, my sister, Alison, and I were also trying to sort out live-in care for our parents. This decision was prompted by a series of paramedic callouts to my dad in May – five in 10 days, in fact. These all related to Dad’s poor mobility – he has Parkinson’s Disease – and included him falling over when he and Mum got wedged in a doorway together!

For the next few weeks, Alison and I were beside ourselves with worry. Neither of us could sleep properly and every phone call made us jump. As I was still living in London, Alison was the one who ended up camped out at the hospital with Mum, every time Dad was taken in for checks. We worried not only about his mobility and safety around the home, but also about their overall quality of life. The four daily care visits, plus one weekly all-morning call, were no longer enough to stave off the creeping chaos caused by dementia. 

The condition is not just about forgetting things, but also about being unable to process information. Every visit we made revolved around picking up the pieces, including identifying dirty clothes that had been put away amongst clean ones, throwing away food that had been left out of the fridge, and tracking down numerous missing items. And that was only the tip of the iceberg. Until you’ve experienced dementia at first hand, it’s impossible to appreciate just how many problems it can throw up.

Ensuring that the carers did what they were supposed to was yet another challenge. The purpose of the morning visit was to get Dad up, washed and dressed, and to give him his medication. Simple enough, you would think? Yet time and again, we found him in dirty clothes that he had been wearing for several days. It was distressing that, in spite of our best efforts to make sure he was cared for, he looked like a tramp. To say nothing of the medication errors we unearthed a number of times…

Mum and Dad were uncomprehending of our concerns. Dad was also formally diagnosed with dementia this summer and neither of them had any recollection of the multiple paramedic visits and subsequent trips to hospital, let alone any understanding of their reduced comfort and safety. How on earth do you persuade somebody of their need for help under those circumstances? No amount of explanations or reasoning enabled them to grasp the situation.

Finally we decided to draw up a list of benefits of live-in care – both to them and us – and left it with them to peruse and, hopefully, absorb over time. In the meantime, we researched relevant companies, who could supply a team of two rotating carers, and chose the one that suited us best. Their rep then visited all four of us at our parents’ home, to conduct an assessment, so that they could be ready to roll as soon as we gave them the word.

However, Mum and Dad still weren’t persuaded. Although Alison and I have Power of Attorney and could make a decision for them if we deemed them mentally incapable of doing so, we wanted them to be involved as much as possible – indeed, it’s an Attorney’s responsibility to ensure that. So we discussed it with them on the phone – again and again and again – and then, finally, arranged to visit them together to talk it all through. At that point, they caved, unable to field any arguments to counter the points that we had raised. At last we had buy-in! For about 30 seconds.

Image courtesy of Simon Howden/FreeDigitalPhotos.net

No sooner had we give our chosen company the go-ahead, than it became apparent that Mum and Dad had forgotten everything we had previously discussed. It was time to admit defeat and take matters out of their hands, for the sake not only of their safety and wellbeing, but our own sanity. We could simply no longer cope with the demands on our time or the emotional and mental pressures.

Many carers are sustained for a long time in their role by a combination of love and guilt, but there comes a point when everybody reaches their limit and burns out. That limit will be different for each and every one of us and will be influenced by our personality, our personal circumstances and our relationship with the person we’re caring for. Given my mum’s impatience, I reckon she’d last about half an hour dealing with somebody with dementia!

We see our responsibility as being to make sure that our parents are well looked after, but not necessarily to do the hands-on caring. Of course, we are still ‘caring’ in the sense that we manage every other aspect of their home and lives, visit at least weekly and phone on non-visit days. Another important factor for me was to take into account what they would tell us to do, if they fully understood their predicament and the strain we were under.

Fortunately, over the last year or so of supporting our parents, Alison and I have always agreed on what we feel is best for them and, in terms of family, there is nobody else to interfere with our decisions. Though we did have some unhelpful comments from a few outsiders, including one telling us ‘Your parents don’t want a live-in carer.’ We knew – as so many carers of those with dementia come to realise – that it had become a case of considering not what they wanted, but what they needed.

We’re lucky that they have, for now, sufficient funds to afford live-in care. Signing the direct debit form that will lead to the rapid erosion of their savings was, nevertheless, a teeth-clenchingly difficult thing to do. I have to keep reminding myself that I can’t take Dad’s approach. He sees those savings as being for a rainy day, but is oblivious to the fact that he’s already in the middle of a monsoon!

And so, after all these battles, Dana* moved in with our parents as their first live-in carer four weeks ago yesterday. She is young, energetic, proactive and cheerful, with a warm personality, and takes whatever is thrown at her in her stride. Which has certainly been a helpful characteristic to have, as there was a rainwater leak through the hall ceiling within a fortnight of her starting! A succession of smaller household issues have followed, prompting her to joke ‘Maybe the house doesn’t like Czech people?’

We’ve been immensely grateful to have her there to help address these problems. Dealing with Mum and Dad in such circumstances is well-nigh impossible. They don’t understand what has happened, can’t present a clear picture of the issue over the phone and can’t possibly contribute towards effecting a solution.

In addition, yesterday Dad took a tumble in the toilet. In the past, this would have meant Mum calling the neighbours in to pick him up, paramedics being summoned to check him over and probably hours at the hospital, both for them and Alison. Instead Dana got him up, checked he was uninjured, and settled him down to recover with a drink and a biscuit…and a promise to me – via a quick text – that she would keep an eye out for any ensuing problems. 

She’s still getting to know our parents and their likes, dislikes and quirks, and we are all working together to put in place whatever is needed to facilitate her role, such as buying a vacuum cleaner that actually works and setting up an online shopping account. Now, though, we are a team of three supporting our parents and we have somebody permanently available on the ground to reduce the risk of disaster.

Better yet, Alison and I are now able to enjoy quality time with Mum and Dad when we visit, instead of rushing about putting right the dementia-fuelled chaos and getting more stressed by the second. Our parents' comfort and safety are paramount, but enjoying the time that we all have left together is a very close second.

*name changed