A dear friend of mine lost his wife last year; she’d lived with dementia for some years and he’d been her carer – and what a carer he’d been! He adored her to the very last, treasuring his own memories of their long lives together and trying to share those memories with her when she could no longer recall them for herself.
During that long period of caring, he’d really gone to extremes to do all he could to support her. I know this not because he’s loudly proclaimed the extent of his care, but rather because – often in passing – he’s mentioned supreme acts of love and care that he regards as simply the obvious things to have done. One example: when his wife needed a hospital-style bed and this could only be housed in their living-room, he’d given over that room entirely to her comfort – and had then himself slept in an armchair every night for two whole years! He didn’t announce this with a fanfare, but simply included it as a necessary detail during the explanation of something else.
You’d think that these memories of having given fabulous and exemplary care would now be a comfort to him – but no; he recently shared with me his torment that on one occasion he’d spoken to her in a snappy way. He explained the lead-up to that event and the dear gentleman had withstood a significant period during which his lovely wife had suffered delusions and had repeatedly reproved him for behaviour and activities which simply hadn’t happened – and he’d finally replied sharply in frustration. This memory now torments him, yet he’d dedicated himself to caring wonderfully well all that time without the support of any formal education on dementia care, nor any respite.
I tell you this because it’s important for hospital teams to understand that this could be the backdrop to someone’s hospital admission – a self-taught, dedicated carer who has become an expert in caring for that individual, having to share that care with a team which has never met the patient before. If the carer seems stressed – whether in general or at the thought of leaving their loved one – their needs must also be met, ie communication with them needs to be warm and welcoming. In addition – and importantly – their in-depth understanding and knowledge of that individual’s behaviours and needs can provide the team with a level of expertise they’d be highly unlikely to amass for themselves – and it can certainly make the person’s care easier, calmer and far more successful.
When I first suggested, all those years ago, that carers should be welcomed as part of the hospital team, for the benefit of all, most people reacted by being sceptical or coming up with reasons why not to do it. Now, looking at all those hospitals which totally embrace the strategy of teamwork with the family carer, we know that it absolutely works – and of course it does! We have carer sheets, detailing the specifics of someone’s care needs – not their medical needs, but the bits and pieces that the usual carer knows and the hospital team need to know in order to care smoothly for the patient. Jane needs to see her slippers at all times, otherwise she becomes upset? Then let’s put the slippers in clear view and everyone’s happy! James always checks the taps aren’t dripping before he goes to bed? Then let’s walk with him to the bathroom and check the taps with him!
Carers, you should expect a welcome from the hospital team and they should understand that it can be very hard for you to leave your loved one with them. In some cases, that person will eat well when you’re there and won’t eat at all if you’re not – so thank goodness you’re not banned from the ward when your input is so crucial! Many hospitals offer carer lanyards, so that your status as a carer can easily be identified, doing away with the general need for compliance over visiting times and letting everyone know you’re there because your presence is valued.
If a dedicated carer feels at ease about leaving their loved one and going away for a while, then we know for certain that the hospital care is insightful and reliable. Thank you to all those teams out there who provide that fabulous level of insight and care.