Should I or he or she or they stay at home or go into care?

This is a question that arises frequently between me and my patients and my patients and their families.

There are two particularly common situations, one, during or just after a significant crisis, maybe a physical or health dip or when a partner (particularly one who has been a carer) dies, and, when a person is very unwell and is likely to deteriorate and die themselves.

Stepping-back and looking at ‘care’ in its broader sense, I refer to the move of a usually older person (there are places for younger people, most of whom have significant learning disabilities) into 24 hour care – a nursing or residential home.

Care homes have been in the headlines particularly in relation to Covid as during the first and second waves of the pandemic they were places that experienced the worst effects of the infection. In some homes half or a quarter of the residents died, in others the percentage was even higher, and this not forgetting the numbers of staff who both died and suffered the acute and long-term effects of the virus.

Care homes have been an ongoing hot-topic within government circles, principally I believe because of the utter failure to protect our most vulnerable citizens and subsequently for the chaotic and haphazard way guidance and support has been provided to those homes, most commonly reflected in the ongoing 14 (or is it 10?) day quarantine period required of anyone entering a care home as a new or returning resident. (For example, with the latter if they have spent a night in hospital, they are forced into isolation, even if they have just come-out of quarantine and even if their LFT and PCRs are negative) – I sardonically refer to this as ‘Go direct to jail, do not pass Go, do not collect £200’

Locked in a room, when you are 90 and if you have dementia and significant physical and cognitive impairment is horrible. It is cruel and harmful. It is what our older folk have to do, whilst we, the rest are out and about, living it up.

There are, broadly speaking, four types of care home, each with an increasing tariff of cost; residential, residential for people who have symptoms of dementia, nursing and nursing for people who have symptoms of dementia. (There are a few ‘complex behaviour units’ for people who have very severe symptoms of dementia).

The irony of some of this, particularly the dementia focus is that nowadays most people living in care homes have dementia; over the past decade, the bar for entry to care, at least if there is public funding for the placement has been raised and people have to be at such a level of frailty and dependence that they cannot be supported at home.

It is common that people who 10 years ago would have been considered requiring nursing-level care (for example, if they have needs relating to insulin administration, pressure area care, complex medicine regimes) would have been in NHS long-stay facilities (see Ward F:13 or Barbara Robb), people who were a little less dependent would have been in nursing or residential care.

From a personal perspective, my grandfather lived for the last decade of his life in a care home in Glasgow. He was so fit, he used to walk a couple of miles most days from the home to the bookies in Pollockshields to place 20p bets on horses at Ladbrokes. (For the Grand National he would be the runner for residents and staff).

The picture is therefore of people in care who are more and more unwell, frail and unstable, consequently we are supporting more and more people at home, either independently or with additional support.

It is a dependency shift to the left.

In most situations that is great as institutionalisation is not for everyone. Conversely, some people actually want institutionalisation; they want to be looked after, they want people around them, they want company. (My grandfather was of the latter).

My point being that over the years it has been harder to move from home to care home, you have to been sicker, frailer and more dependent than a few years ago.

Yesterday’s sick, frail and dependents are now living at home with carers visiting multiple times a day, this is occasionally called ‘double handed care’ where two carers will visit the person at home to aid ‘transfers’ = getting in and out of bed or on and off the toilet.

And so, you might have read some of my blogs about the work I do in care homes in the past.

Some of them aren’t that bad. Some are good.

For others, moving into care is a fate worse than death.

My paternal grandma I recall was in this group and hated the idea, as far as I know she lived at home until her final hospitalisation.

I’ve perhaps mixed-up all of this too much. Jumbled ideas. Let’s see.

1. There are different levels of care available in institutions called nursing and residential homes (generically ‘care homes’).
2. Some people will do anything to avoid living in a care home, others are quite keen.
3. Some care homes are good, others are bad, this is mostly, IMHO, related to the level of staffing, their training and the extent which they look-after and care for the residents (management is important too).
4. Some people struggle to live at home because of extreme loneliness and social isolation and thrive in care homes.
5. Care homes are mostly funded by the NHS or Social Care with many people also contributing themselves – so called, ‘self-funders’, for this latter group, the decision whether to move into care is more dependent on them than a bar set by social and NHS workers.
6. People living in 24 hour care in 2022 are significantly frailer, older and more dependent than 10 years ago, those people who are less frail and dependent are supported at home.
7. Being supported at home can be great if that is what you want, particularly if you have family who will keep you company and provide additional care, if you don’t have anyone, being alone with a carer popping-in for 15 minutes once or twice a day, can be a painful way to spend your last years of life.

And, my point?

Well, I won’t revisit old-ground, such as the amount of training and funding (wages) provided to carers working either in homes or delivering home (domiciliary) care, in the UK, like in education and healthcare, if our priorities were right we had higher taxes, proportionately more resource could flow into these areas (and please don’t tell me, ‘but the government has invested £xxx million in,’ that is, we know, bollocks).

We would listen to what people want and gain a better understanding of individual’s needs.

Loneliness is horrible.

Even for a socially awkward and solitary person like me, spending too-long alone makes me crazy.

If people thrive on company, provide them company, not 15 minute carer visits.

Yes, there are charities and societies that aim to address this loneliness, none of them provide the atmosphere of a home.

And that is particularly relevant as when we say, care home, the allusion is to a home; not a house or a building, an organisation or institution.

A home is where you are relaxed, comfortable, where you can shut yourself away or spend time with others, where you can eat alone or with company, where you can wear what you like, say what you like, do what you like (within homely reason!)

Years ago I visited a home in Holland; this was for people living with dementia. The central living-place was the kitchen. There was a log fire, comfortable settees; they had a Labrador. That is a home.

There are probably similar homes in the UK although almost certainly beyond the reach of regular people.

When a home is four walls, a TV that you can’t see or hear, an alarm system that calls a central phone-hub every time a person visits, where you gas is cut-off for fear of your blowing yourself up and where hour upon hour can pass without seeing another person, that is not really home. That is existing.

We are human beings who thrive on being with others, being part of a whole, not locked away in a little box-room.

In my experience, those who value home above everything (as compared to moving into a care home) are those who manage to maintain a home, with family, with routines, with ornaments, soft-furnishings and so on.

We are all different, we are all individuals, we are all constrained by something or other.

Let’s work towards home.