It stretches your patience to the limit, calls into account untold skills of perseverance and negotiation and demands that you never take your eye off the ball. And then there is the guilt.
I was talking to a friend about this. Her 80-year-old father has cancer and dementia and her mother physically can’t do everything for him – although she is determined to try, putting her own health at risk every day.
When my friend’s two children reached their mid-teens, she was delighted to be able to revive her career in public service. This involves travelling away from home two or three days a week to attend meetings.
She is trying to juggle work and the constant nagging feeling that she isn’t doing enough for her parents. “I just wish there was a safety net,” she says. “I just wish that accessing the care they need without being made to feel neglectful by the authorities was easier.”
This is an important message to send to all political leaders ahead of the election. It’s not just the immediate needs of the person being cared for that requires careful consideration, but the knock-on effects.
This requires a deep and serious commitment to integrating all aspects of health and social care and future-proofing it so our children and grandchildren can be enabled to navigate the system without the stress and anxiety experienced by our generation.
Labour’s promise to build a ‘national care service’ and introduce free personal care for over-65s sounds good on paper but it’s unclear where the investment might realistically come from to pay for it.
For the Conservatives, Boris Johnson has pledged £1bn in extra funding for social care without clear delineation of where this money might be focused. At the risk of generalisation, I’d say that this has long been the typical Tory answer; throw money at the problem and hope it sorts itself out. Indeed, if you have the financial means, social care isn’t usually a challenge.
This is why recent Conservative governments have missed the point. It’s not just about selling your home to pay for social care – what about, for instance, the countless over-65s who don’t own their own home?
When he was in charge of the NHS, Jeremy Hunt’s default position was to assume it was someone else’s problem. Then his successor Matt Hancock never actually produced the long-promised review of social care and insulted many elderly and vulnerable people, their families and the caring profession with his blithe avoidance techniques.
These privileged politicians simply don’t understand. With pots of money, you just find and organise the best care package on the market from a private company, set up a monthly standing order and delegate the whole thing. Washing, dressing, putting to bed and getting up for an elderly relative determined to remain independent in the own home? It’s all taken ‘care’ of if you have the means. Residential or nursing home? Supported living? There’s a plethora to choose from, if you can afford it.
What though of the estimated 1.5 million individuals said to be receiving inadequate care? And how do we define ‘inadequate’? Speak to anyone attempting to put together a care package for an elderly relative and they will tell you that even when it appears copper-bottomed, there is always a flaw. Carers fail to turn up, or arrive too early or too late. Waiting lists for specialist equipment stretch well into the next decade. Adaptations for the home – such as stairlifts and wheelchair-friendly ramps – must be self-funded.
I have so many friends going through this right now. All have elderly parents in need of support. And all are frustrated to the point of exhaustion thanks to a lack of cohesion between services. One of them hit the nail on the head. Her father suffered a life-changing medical emergency two months ago. After a long stay in hospital, her mother wanted him to return to his own home, where he can be looked after by his family and a round-the-clock team of carers best-equipped to deal with his specific health and medical needs.
What strikes my friend most is the jagged disconnect between the dedicated medical attention her father received in the hospital high dependency unit and the ‘abyss’ (her word) of the social care system. As such, elderly people – and their families – live in hope that this neglected issue will finally be addressed.