For the last six or seven years – to be honest I can’t remember exactly how many – I’ve been affected by dementia. It’s impacted on my life in ways I find hard to put into words. I can’t pretend that it’s been easy. It hasn’t. It started off OK, beginning with a vaguely foggy memory. This wasn’t such a big deal. After all, politicians are forever forgetting to deliver on their promises and constantly need reminding of the fact. In their case, no one hardly bats an eye.
To look at me in the early days you wouldn’t have had a clue. To meet me in person, you’d have thought I was perfectly fine. And to all intents and purposes I was. Indeed, I remain the same sharp, vaguely witty, seemingly intelligent and totally sane person I’ve always been. I even voted to leave the EU and bet on Donald Trump to win the American election. Therefore, who in their right mind could possibly accuse me of not being entirely compos mentis?
For the same amount of time as myself, my younger brother has also been affected by dementia. This shouldn’t come as any great surprise either, since like thousands of others up and down the country, it wasn’t us who had this terrible mental and physically debilitating condition. It was our mother. We were simply the ones who had to endure it alongside her. In a sense, she was the fortunate one. She had no idea of what was happening. As with fellow sufferers, she was completely unaware of her condition, residing in life’s limbo land waiting for her number to be called. The Godly equivalent of an Argos collection point, if you like.
Almost two weeks ago, she finally reached the front of the queue. There was no heavenly voice booming: “Claire Marshall, please go to Departure Point A”. However, while sad, her passing could be seen as particularly felicitous.
Had she considerately not died when she did, the money from the sale of her house would have all but run out. It went below the magical £23,250 cap last October. This is meant to be the figure when social services are supposed to be there to help. I can regretfully report that they weren’t.
A short while before her demise, our mother was assessed for something called Continuous Care to assist financially. By the nature of its name you’d reasonably assume this refers to a person who needs round the clock assistance. Alas, it doesn’t. Instead, it’s apparently there for patients who are prone to occasional and sudden physical outbursts and who might be a danger to themselves, staff and other residents. Worse still, it’s hardly ever awarded. If Charles Bronson, Britain’s most violent prisoner, ends up in a care home, you can bet your bottom dollar that he’ll be given Continuous Care. That’s quite how crackpot the system is.
As it turned out, our mother was refused this much needed assistance. The people who carried out the assessment and saw her lying in a bed incapable of any type of bodily function whatsoever informed us that should her health deteriorate, then to please get in touch again and they’d return to reevaluate her. Under the circumstances, we were lucky they didn’t pass her fit for work and she spent her remaining days as a supermarket night time shelf stacker.
Frankly, the only way she could have conceivably deteriorated any further would have been death. Which ultimately is precisely what happened. And while I am tempted to call them up to say her wellbeing has dramatically worsened, I guess that they, like her, won’t be coming back.
Of course, had she, in some cruel twist of fate, continued to survive, it’s difficult to say what would have happened. With the money gone, would she have been left in the care home car park; a wheezing, spluttering bag of bones, ready for us to collect? Would she have been forced to move to another cheaper facility hundreds of miles away from her remaining friends and family? Would we have been made to dip into our own pockets or in an ironic display of self-sacrifice had to sell our own homes to pay for her care ourselves? We’ll never know. Although having frantically called up Age Uk, the latter was a distinct possibility. “It all depends on the local council”, I was told.
But just because we won’t now have to personally find the crazy £5,000 a month nursing home fees, does this mean that we won’t continue to fight those individuals, institutions and government bodies who on a daily basis singularly fail to help and support those with the disease? Does it hell.
Our mother may have gone, but the problems facing dementia care in this country most definitely have not.