The Difference between Care and Caring

Many of you will know or know of my Grandad. Some of you will know him because I talk about him alot - he’s a big personality and to not talk about him would do him a disservice. Some of you will remember him from a project we worked on together titled Liam Gallagher is my Grandad in which I taught Grandad how to make art in an attempt to discuss ageism in the artworld and beyond.

For the past 18 months Grandad has been dying - dying a slow, often painful and degrading death. Grandad has terminal cancer - melanoma and lymphoma. He says “cancer’s in us to the backbone, it’s no surprise”

As the first Grandchild to an Irish Catholic family my Grandparents have watched me grow up whilst I’ve watched them grow old. Grandad used to once smother my hand with his, I now clasp his hand and elbow as he slowly walks to and from the bathroom. Thankfully, my Nan is in better health - she’s had a knee replacement and is due another, she’s also lost most of her hearing but shame prohibits her from wearing a hearing aid.

Since I could talk I’ve helped my Grandparents navigate the health service and local council bureaucracy- in fact any interaction in which they might have to read or talk to so-called “educated people”

I’ve watched how the world has gone from a place of opportunity to a place of complication for them both. On a recent trip to the hospital with Nan for an assessment for another new knee a specialist showed us to his room - he spoke into a dictaphone and ignored her. At the end of the consultation I asked Nan if she knew what was going on, she said no. He then told me she was getting the go ahead for the operation, I told him to tell her. After telling him he would need to speak up so she could hear him he put his mouth up to her ear and shouted his prognosis in medical jargon - she was still none the wiser.

As most of my family live 50 miles away and as Grandad’s care becomes more complex he now has carers at least three times a day. Care workers help him get to the toilet, they pour cornflakes into bowls and shower him.

The carers who look after Grandad differ in friendliness and ability. I’m aware this might make me sound ungrateful, but I’m saying this not to vilify caregivers but to critique the framework in which they are expected to work, to scrutinise the training (or lack of) they receive, to dispel the myth that despite how politicians talk about care system in the run up to Thursday’s vote that the money, training and thought isn’t currently put where their mouth is.

Since Grandad’s home help has begun he has had well over 20 careers. From frank and fleeting conversations with them I’ve found out they are rushed, overworked, underpaid and tired - coming from one job, dashing to another, they snack on bits of food where possible. Most have found themselves in care to earn a living or as a stop gap - care work is underpaid and ill thought of.

The road that lead Grandad to receiving this care is a revealing one. After spending almost a year being taken to hospital by ambulance after almost bleeding to death on multiple occasions Grandad was finally admitted to a ward. During his stay he received brilliant, personal and interactive care from nurses - again they did what they could with the time they had. They were always extremely grateful that we would care for Grandad and in the words of one Irish nurse "do their job" However, doctors and specialists failed to listen or talk to him or my family, too busy to stop and discuss. As a result he was subjected to no less than four endoscopies in as many weeks.

Every fortnight my Mum has to double check the amount of tablets Grandad has been prescribed - it’s common for the local clinic to forget to issue a prescription to the pharmacy or for the pharmacy to forget to deliver his medication. In fact a few months ago we noticed a massive change in his mental health, only to find out a GP had missed off his depressants.

The point I’m trying to make by off loading these anecdotes about my Grandparents interaction with the health and care system is not to attack doctors, nurses, carers or health workers but to attack the conditions curated for them to care, to attack the facilities available to them to nurse, to attack the decisions made by our elected politicians that directly result in the quality of life for our most vulnerable.

These stories are not just affecting my family, my Mum is also a caregiver and her experience of current social care echos those of her parents - those who are most in need of care in this country are part of the care system but rarely are they cared for.

I’m aware we have an aging population, I know care costs and I know we, as a society have an ever growing expectation of what the state should provide. I don’t have the answers to how we improve the system but I know first hand the system isn’t working. I know agencies are out to profit, that the NHS is being dismantled, that local social care is over-capacity and everyone who staffs it are expected to go above and beyond every single day.

If we are not going to allow those like Grandad who don’t want to prolong their pain to have control of how they end their life, if we enforce their degradation we need to have a collective, frank conversation about the difference between care and caring.

I’m not here endorsing Dignitas, nor am I saying the problems with the care systems are solved with euthanasia, but I think we need to revisit the value we put on elders lives (and by value I mean I don't mean financial) and their wellbeing because currently we’re stuck in a perpetual circle of legally keeping folk alive who want to die at the same time as supplying erratic, underfunded and under resourced care that contributes to their decline.

Health and social care in the UK is about putting out big fires with small buckets and it needs a major rethink - I think profiteering needs to be abolished, the value of care-givers and their accreditations improved, services need to be joined up and we, the families of those cared for need to be a part of the conversation on how it improves, evolves and changes with the person in mind.

I have grandiose ideas of how queer commune culture, the degrowth movement and architecture could create alternative solutions and futures to the way we look out for each other, alleviating the pressure on our services but Rome wasn't built in a day and I don't hold the purse strings.

On Thursday we have the choice to vote for a string of parties, each with a varied plan for future care giving in this country. I urge you to read their health and social care manifestos and let that help you inform your decision - the future of how your families end of life care, their well being, their dignity depends on it.


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