Care for those who cared for you

While exploring a potential project last week, I came across the brilliant work of Ad Infinitum, a Bristol-based international theatre company. Their mission is “to challenge, move and provoke” audiences by telling stories about people who are marginalised because of their ethnicity, gender, sexuality or age, for instance.

Their three-part podcast Home from Home: Journeys into Elderly Care really affected me, particularly at a time when my father is feeling more lonely, preoccupied with his mounting ailments, slowly losing confidence in body and mind. How did we get here so soon? When the time comes to have that conversation, I hope I have the strength and selflessness to focus on what he really wants, and little else.

This is a very sensitive and contentious topic. How to respect the wishes of an elder and balance them with our day-to-day responsibilities and personal goals… What happens if you can’t reach a consensus in the family on what is in your father or mother’s best interests? And when should you push back on a hospital’s recommendation that they move to a care home?

This issue will become even more prevalent in years to come. Life expectancy for both men and women is rising steadily in the UK, while analysis of satisfaction levels in local services by the Nuffield Trust “found concerning levels of unmet need among patients with two or more long-term health conditions” (such as heart disease, diabetes, asthma or mental illness).

Care homes have been under extreme pressure during the pandemic, with managers and staff reporting “a complete breakdown” in systems in the first six weeks, one in seven people saying their level of support has reduced and the number of deaths exceeding 32,000 this year. A truly horrific statistic.

Debt is also a huge problem in the sector as Wired reported last May, a specialist business risk adviser predicting that one in three care home operators could fail in the next three years.

All important big-picture stuff, but the reason Home from Home is so arresting is that it brings the political back to the personal. Ad Infinitum’s co-artistic director Nir Paldi interviews three adult sons/daughters about their experiences of the care system, what it feels like to witness the deterioration of a parent, and the inner/outer conflicts that arise. These conversations are heightened by an evocative sound bed designed by Jennifer Bell, who also produced the podcast.

Each story draws you into the gravitational pull of its emotion. In episode one, Paul despairs at how his father can’t take any comfort from his staunch Catholic faith in his time of need as he languishes in a home he hates, riddled by Parkinson’s. Then there’s Cathy in part three, seeing her mother withdrawing from interactions with co-residents, for fear of experiencing another bereavement.

The most vociferous interviewee is Lizzie, a psychotherapist whose mum suffered a stroke and spent a month in a neurological unit. Lizzie’s sisters and their partners were keen that her mum be transferred to a care home but Lizzie knew she would hate it (having lived in the country, loved the outdoors, appreciated aesthetics). The homes Lizzie visited were very poor.

Sympathetic to the impossible amount of care that staff have to provide, and adamant that her mother should feel a sense of familiarity and homeliness around her, she offered to split her time between online consultations with patients and looking after her.

The debate opened up deep-seated differences in the family. Unresolved sibling rivalries playing out in the absence of the matriarch… And it was ultimately futile as her mother ended up in a home, which stunted her rehabilitation progress as she immobilised herself in protest.

Lizzie’s attitude is that quality of life is everything at this stage, even if you encounter risks along the way. You have to consider the social, psychological and spiritual implications of these decisions. That’s why she would rather her mother embark on an arduous bucket-list trip to India, and possibly die while she’s enjoying herself, than fade away among strangers in a strange place.

Not only that – it is our responsibility to care for our elders and give them the most meaningful final chapter that we can, not abdicate that responsibility to an institution, as she explained to Paldi.

I am going to include a transcription of her words below because you need to hear and read what Lizzie is saying. This part is crucial and will stay with me forever.

Paldi: So I was just wanting to ask whether you feel that it is wrong putting an elderly person in a care home, as simple as that? Or do you see nuances within it?

Lizzie: My personal opinion, I think it's absolutely unacceptable and I think that children have a responsibility, just like we look after children or dogs or whatever else, we have a responsibility to look after our elders. At the same time, I understand that a lot of people do not have the capacity to care for an elderly person, or if they've had a complicated relationship with their parent or they hate the parent or the parents abused them or whatever else, then I can understand that it makes care-taking very, very problematic. But what galls me in my situation is that I have a nursing background in general nursing and mental health. I'm also a psychotherapist. So I understand about psychological processes, so I know I have the capacity and the desire to look after my own mother and give back to her what she gave to me.

I think that we are phobic as a society and as individuals, we're phobic around death and dying. We can't handle it and so we stick our elderly away, unconsciously, because it's too threatening to see our own mortality in them. Then we have a situation where people will stay away from visiting their parents, or they'll do a tokenistic once a month or once every two months visit. Because it's so deeply confronting to see fragility and deterioration and dementia and Alzheimer's and so on. So they give it to the institutionalized parent and basically abdicate responsibility. So I think that the factors are extremely complex and I think it's too easy for us to do this, and I think it's a tragedy. Absolute tragedy.

Listen to all three parts here and check out the accompanying zine created by Naomi Gennery.

What are your experiences of elderly care? Any words of wisdom or suggestions you can offer? Comment below.

PS It is concerning how two of the three interviewees mentioned a lack of consultation between themselves. the hospital staff who looked after their relative (and were therefore in the best position to ascertain the level of day-to-day care required), and those who decided to move them from hospital to care home. This process should be reviewed.