I have been a carer for my husband for the last ten years or so. He has had Parkinson’s Disease (now very advanced) for some 20 years and has PD dementia. He is unable to do anything for himself, cannot stand or maintain a seated posture, cannot speak or feed himself, has difficulty swallowing, is incontinent of urine and faeces and has a painful grade four pressure sore. Yet he is immensely stoical, sometimes even tries to thank his carers, has a smile that lifts my heart, will laugh at a joke and loves to listen to lively conversation.
Early on, I made the decision – or, rather, found myself making the decision – that, whatever happened, as long as he still knew me, and knew where he was, he would not go into a care home if I could possibly prevent it. When someone has lost everything that makes life worthwhile, I felt, you do not take away the one thing they have left – their home. And I know that this is not a choice that everyone – with the best will in the world – can make, but it was my choice.
What followed was a long and protracted struggle to be awarded NHS continuing care – indeed, everything was a struggle, getting attendance allowance, a blue badge, a taxi card and so on. But all these battles were eventually won. In the process, I have encountered many aspects of the health and social care system, and how it operates, and have had many opportunities to reflect on what carers like myself need; on how difficult it can sometimes be to find the really good equipment (ceiling hoists, standing hoists, specialist chairs, bathing equipment) that is needed; to reflect on how immensely skilled and financially undervalued domiciliary carers (usually on zero hours contracts) are; on how the CQC regulatory regime appears, from my vantage point at least, to add to the bureaucratic and managerial burden on agencies without actually strengthening the status or security of front-line careworkers. So much so that some domiciliary services now refuse to administer meds – they can prompt, but not administer. How does that help a dementia sufferer who might need meds every two hours, like my husband?
I have found how frightening it is, when the carers have been and gone, whether to wash, dress or toilet my husband in the morning or put him to bed at night, to be on your own, responsible for an 85 kilo man, unable to mobilise, who might need to be cleaned and dressed again after emptying his bowels into the pad he is lying in. I have done this, it was exhausting, terrifying, took me over two hours and I ended up supporting his bodyweight on my shoulder while I pulled up a clean pad onto him. I could not have left him overnight in this foul-smelling mess, not to mention the possibility of contaminating and infecting his pressure sore, and the risk of sepsis. Other carers I know of have faced similar situations – the need to clean up after projectile vomiting, for example.
If it had been a medical emergency, I could have called the out of hours GP, or the paramedics and ambulance service. If he had fallen, I could have pressed the alarm button for Carelink who would have attended with specialist equipment to raise him up. But this was neither. Which led me to the realisation that we need an out-of-hours service midway between these two. A kind of extended Carelink, organised locally as now, operating on a regular weekly subscription, supplemented by a callout charge, which would come out to help a home carer in just the kind of situation that I have described, to help toilet, clean and dress. The standard pattern of social or health care provision, of two carers making up to four visits a day, may simply not coincide with when those visits are most needed and does not take account of night-time emergencies. Care agencies are ultimately commercial enterprises, and cannot operate an ‘out of hours’ system.
One might need to use such a system rarely – but the reassurance it would bring to carers like myself would be immense, and, properly organised (with those opting for such night-work properly rewarded) would, I believe, enable more people to be cared for in their own homes, thus reducing the pressure on care home places and hospitals. One often hears those who have had to resort to this say ‘it was the worst day of my life when I put my husband/wife in a home’; a service like this might give more people the confidence to carry on.