The Independents
With millions more people growing old on their own, we take a closer look at the state of care homes and assisted living.
Words Vicky Spratt
Illustration Nimura Daisuke
Care homes are places as particular as they are peculiar — the hospital-clean smell of linoleum and air of organised routine combine to suspend normal reality the moment you enter. Assisted living flats are not much different, and these sterile environments will likely be home to millions of us in future. So what brings an older person to the point where they enter care?
“The reasons for admission vary widely,” says Rose, a former carer with seven years’ experience. “In dementia and nursing care it’s generally based on the resident’s inability to care for themselves any longer. I’m a strong believer in those people being admitted to a specialist unit rather than being cared for by their relatives, which can be devastating and draining.
“While most residents have family that visit regularly and are deeply involved with their loved one’s care, some do not.” In these cases carers can become closer to their wards than their family members, which care staff are often uncomfortable with. “I had it happen a few times,” says Rose, “where I was closer to someone than their own family. It didn’t feel right.”
There is, Rose feels, much that needs to be done to improve care. “Most people who become resident in a care home know that they will be likely to be there until the end of their years. Their outlook on life generally tends to go one of two ways: it either improves or becomes more resigned as their tenure goes on, as they make friends in the home. That’s for the lucid ones of course. For those with dementia they tend to remain disorientated throughout, it gets a bit better through their stay but not much…”
Care work is a vital part of the fabric of our society, but care workers are routinely portrayed as low-skilled, and the work they do rarely gets the recognition it deserves. Toby, who has worked in elderly care for ten years says he decided on this profession as a result of personal experience.
“I got into the job because my Nan had a diagnosis of dementia. We saw her progressively get worse. The local authorities didn’t want to know at the time, they were happy for her to live by herself, petri ed on a daily basis. With lots of begging my mum and dad eventually managed to get my Nan into a home.
“Every time we went to see her she was sedated heavily and this broke my heart — seeing a woman who was so strong and independent being controlled by drugs. It was this which pulled me towards the job, wanting to help people.”
Toby became a carer after that. “Initially I worked with people with dementia and I still love being a key worker, building a bond with my allocated residents. I take pride when they won’t let anyone else assist them and they only wanted me to help them. However it’s equally important to build a relationship with families, reassuring them that their relatives are being well looked after and giving them that peace of mind.
“Some residents have families who choose not to visit because they find it too difficult to see their family member suffering with dementia. I can sort of relate to that but they must understand the difference it would make to their relative. Even if a visit lasted five minutes that can change their whole day.”
Caring is often difficult work despite the emotional rewards, and Toby says one of the most challenging things is seeing people accept assistance with day to day living.
“Some of them have to come to terms with losing the home that they grew to love and watched their families grow up in. It’s even harder with people who suffer from dementia as they might have thoughts that their parents, husbands or wives are still alive when sadly they’re no longer with them. Seeing these people go through the same heartbreaking thoughts multiple times a day is very difficult.”
Toby is keen to talk; he’s proud of his work and it troubles him that care is neither valued by the government, as he sees it, nor respected by the media. “I have been a team leader for the past two years now and I would say one of the biggest challenges a care home will face is the paperwork. This draws me away from residents. Spending time with them is more crucial than a bit of paperwork.”
“Care workers are routinely portrayed as low-skilled, and the work they do rarely gets the recognition it deserves.”
Rose, who is now a solicitor and no longer works in care, feels conflicted. “Our attitude towards old people is interesting,” she says. “Based on the show of love I’ve seen towards most residents in my care we haven’t given up on our aged relatives by any means. Generally people put their loved ones in care because they have no choice, not because they want to dispose of their well-being (although there are obviously motives that you question). Often the best care is provided by an institution, which ensures their 24-hour care.
“However, a lot of my co-workers were Asian and were appalled at how we treat our relatives. Most foreign workers think our outsourced culture is absurd. I’ve spent a lot of time considering this conundrum and haven’t got anywhere myself.”
Does she think there are any obvious alternatives? “Care homes should be charities or not-for-pro t organisations. It made me so angry the astronomic amounts they were charging residents for substandard care in return. I know the NHS is falling apart and that no-one will want to run care homes for no pro t (even though more will be needed in the next few years), but as far as I’m aware it’s very difficult to get a funded bed in a nursing home, so there’s no choice but to pay.” Care, she says, should not be a commodity.
What’s interesting is that despite the exponential increase in older adults, the number of annual admissions to care homes remains static. In 2011 around 291,000 pensioners were resident in care homes, a number just 1,000 more than a decade earlier.
Caroline Abrahams, Charity Director of Age UK, says this is because “most people prefer to stay in their own home, so fewer people in care homes is not necessarily a problem — as long as those who need care receive enough high quality support to give a worthwhile quality of life.”
She also warns that people living in their own homes are not getting enough support, “so many older people who need care to continue living at home with dignity can’t get it unless they can afford to buy it in privately.”
The government is currently in the process of changing means testing for care at home. Currently eligibility requires that you have less than £23,250 in capital and savings. Any more than this and you must pay privately. After April 2020 the upper limit is set to be raised to £118,500.
In spite of this as much as £4.6 billion has been cut from adult social care budgets over the last five years. Ahead of the Autumn Statement in November 2015, social care and older people’s groups wrote a joint letter to the Chancellor George Osborne, warning that up to half of Britain’s care homes will close and the NHS overwhelmed without sufficient funding to help plug the gap.
I write this as four elderly, unwell and beloved grandparents sit in their own homes in south London, embattled. Having refused to enter care and remaining strong enough until now to avoid it, each of them now suffers from different but equally serious ailments, from crippling emphysema and degenerative blindness to throat cancer in remission and moderate heart failure. Through choosing to remain in their own homes — the value of which now surpasses the eligibility threshold — they will not have access to support.
The fact that I, at 28 years old, have had the privilege of living over a quarter of my life with four grandparents to love and confide in is, in many ways, a tribute to the tremendous, indomitable success of modern healthcare. And yet I find myself in a bittersweet situation; when I spend time with them now I wonder whether we have privileged longevity over a good life?
The weakness and frailty of living so long often means that the elderly, including my own relatives, become reliant on others for simple things like going to the toilet, bathing and eating. There is no shame in this, and yet I know that they feel it. Equally they tell me what continues to buoy them is “having purpose” and remaining in the home they worked so hard to create.
I have watched all four grandparents resist help, and sometimes even put themselves in danger to “avoid being a burden.” I have heard the tremor in their voice when care homes are mentioned in passing. Yet financially and practically we are not set up to support them. In order for them to remain at home we need better external support structures and more flexibility in the workplace for us, their family, to accommodate their needs.
We need to imagine a future in which adult social care and end of life care, isn’t seen as a ‘problem’ to be solved or a ‘crisis’ to be managed, but is recognised for the incredibly valuable part of life it is — a set of relationships between humans, between generations, as meaningful as they are necessary. Support in the community and care within families must be viable, sustainable and seen as essential. Meanwhile specialist care and those who work in it must be funded and respected for their highly specialised jobs.
If life is a narrative with a nite beginning, then like all stories the ending is the most crucial part. As a society we face two pressing problems as our population simultaneously grows and ages: the first is how we plan to care for those we love, the second is how we manage the body’s decline and how we approach the end of life. These two questions pose a challenge we all must face and invite us to ensure that a long life can also be a good life.
What now?
Take action! Read about Hospitable Hospice
A Singaporean initiative transforming end-of-life care. Hospitable Hospice places an inpatient hospice facility right in the middle of a community and integrates contact with its patients into the everyday lives of the community’s members, young and old.
To explore the subject of ageing we teamed up with The Powerful Now, an IDEO + SYPartners initiative poised to creatively redefine ageing as a path of continual growth instead of decline. Together we wanted to explore the ways in which health, money, work and communities will exist in our future, and initiate discussions to find radical new solutions.
This article is taken from Weapons of Reason’s third issue: The New Old. Weapons of Reason is a publishing project to understand and articulate the global challenges shaping our world by Human After All design agency.
