12 February 2017

Role reversal

Last summer, my sister and I became aware that our parents were no longer able to cope on their own. There were telltale - and in some instances, distressing - signs of this, both in their physical condition and around the house.

It was a shocking realisation, even though they are both in their 80s. None of us likes to think about illness, decline and death and it is easy to remain in denial about it ever happening to our loved ones. However, the slide from managing to not managing can happen quickly, particularly when you're dealing with degenerative conditions: Parkinson's in Dad's case and early to mid stage Alzheimer's in Mum's.

My sister and I spent 2.5 hours on the phone one evening, discussing the problems that we'd observed and the kind of support we might arrange. The following morning, our parents' GP also called me to express his own concerns. 'We want to avoid a crisis,' he said.

We were too late for that. A few hours after that conversation, Dad was unexpectedly admitted to hospital, having lost the strength in his legs and been unable to stand up again.

In fact, this hospital stay proved to be a blessing in disguise, as a care needs' assessment had to be conducted to prepare for his return home. Without that professional intervention, I'm sure it would have taken significantly longer to persuade our parents to accept help.

Morning and evening visits were established, to get Dad up, washed, dressed etc. It was a start, though my sister and I knew that much more was needed. 'In a few months, we'll have everything in place, they'll be settled in their new routine, and we'll be able to relax a bit,' we told each other. How naïve we were!

It's only now, six months on, that we've reached some sort of stability, with much more help in the home - all self-funded, but with some supplied through the council and the rest sourced privately. Fortunately our parents have sufficient funds to enable us to supplement the minimal care package proposed following the local authority assessment.

Of course, you are often not only battling the system, but the very people that you are trying to support.
Image courtesy of Danilo Rizzuti/

Initially Dad declined the evening carers' assistance when they turned up on the doorstep. 'They're in and out in 10 minutes,' he complained, completely missing the point that this saved an hour of him and Mum struggling to get him ready for bed. 

In fact, between his physical constraints and Mum's dementia, it's a wonder they ever got him sorted out. Mum moans at Dad for not helping himself more, because she's forgotten that he can't. Dad sends Mum off to get what he needs, and wonders why she comes back, a long time later, with either the wrong thing or nothing at all. If it weren't so tragic, it would be farcically hilarious. 

Eventually their social worker decided that it would be better to stop the evening visits, as they were a waste of the carers' time. Only for Dad to have another 'wobbly legs' incident a few evenings later, with nobody but Mum there to rescue him. Cue a series of panicky phone calls, trying - and failing - to get those visits reinstated that same weekend.

Of course, I understand my parents' reluctance to agree to help. It's an admission that they're getting old. It signals a loss of independence, privacy and, to some extent, dignity. And it's frustrating and inconvenient to be waiting on others to facilitate your day-to-day life. Dad huffily told me one day, 'We'd rather none of this were necessary.' So would we all.

On the flip side, my sister and I couldn't continue to live with the stress and anxiety of knowing they were struggling and wondering what was going to go wrong next. Our primary concern was to keep them safe and comfortable - and at home - and if that meant being a little forceful on occasion, then so be it.

It's just another element of the parent/child role reversal coming into play. As children, our parents often made us do things we didn't want to, for our own good. So, while I seek to respect their wishes and avoid upsetting them, there is an element of us now knowing better and having to persuade them to do things for their own good. 

This is a particular challenge with Mum, who is unaware she has dementia, and always thinks everything in the garden is rosy. During one phone call, she chirpily told me 'We're fine. We'd tell you if there were anything wrong.' I was feeling especially tired and irritable that day and couldn't stop myself from responding 'What, apart from the fact that you can't remember anything and Dad can hardly walk?' 'There is that,' she said, just as chirpily. It's easy to see how they fooled us into thinking they were managing.

Caring for parents is something most adult children have to face sooner or later. Thankfully these days there is masses of information available online, covering everything from accessing social care and funding, to dealing with the mental and emotional impact of becoming a carer.

Age UK is a brilliant place to start - they have dozens of factsheets, as well as more detailed guidance, on every aspect of elderly care imaginable. Independent Age and When They Get Older are also great resources. Be warned, though, you'll end up with a 6-inch high pile of reading, which can feel overwhelming. In that respect, some of the key things I've learned are:

- Focus on solving the next most serious problems, ie those that are a question of health and safety, and put the rest on the back burner - your 'to do' list will never be done, so you have to prioritise.

- Try to plan a little ahead, to prevent new, major issues arising - we've been on the back foot for most of the last six months and only now have the breathing space to do this.

- However, don't 'pre-live the future'. When you look back, you'll be surprised at what you've dealt with and achieved, so try not to look forward in fear of what might happen and how you'll cope.

We are all stronger than we realise and the journey that my family is now on is proving that to me every day.