When I get old – our manifesto

A movement of people creating the care and support we want in older age

None of us wants to live in a place we can’t call home. Where we can’t get up and go to bed when we want, eat the things we like, do the things we want; where the people we love and who love us aren’t around; where we feel we have no purpose and know we are not valued. Where the needs and wishes of an organisation sometimes seem more important than our own.

Limited care options for the people we love – and us

And yet………for those of us whose parents, partners or friends are growing older, we see all too clearly the limited range of care choices available to them. Maybe we support family members as they face a crisis – perhaps falling and breaking a hip, a slippery memory getting worse, the loss of a spouse or loved one making it hard for them to cope by themselves anymore. And in that crisis the state doesn’t seem to help much, especially if they own their house or have some savings. So, we look around for help and see that the only things on offer are care at home or a care home. The cost of these services can be astronomical, with some residential care home places costing between £1000 and £1500 or more a week. Too many are provided by big organisations who make a profit from our crisis. And if the state can help it’s the same alternatives – but the state pays less, and we have less choice.

So, perhaps we choose a care home for our parents and if we’re lucky it might feel like a good hotel, with nice food and great care – but for them this doesn’t feel like home.

They might be able to stay in the house they have always lived in, but the care may be provided by people who change all the time, who come at times that suit the rota and focus on ‘care tasks’ like getting bathed not the things that make life worth living. Somehow their house doesn’t feel like home anymore.
We realise that few providers for older people have the resources or mandate to help people maintain or create loving relationships, to be purposeful and be valued. Some providers that do have the resource and mandate don’t see this as their role. Somehow all the things our parents used to do and be, are less possible.

Is more money the answer?

Care providers say the problem is money. If more money were available then organisations could pay their staff better, recruiting or training more qualified people who would stay around. Staff would have more time to spend with the people they support. It is certainly true that social care has been starved of money for years (decades) and many councils and some providers are now on the verge of bankruptcy. But will more money in the system on its own translate into better care for people, underpinned by better terms and conditions for staff? And even if it does, are these the services that most of us want as we get older?

Burying our heads

Alongside this we are growing older ourselves, but we don’t plan because we secretly hope that we will stay healthy, active, and independent until the day we die. We know this is unlikely to happen, but we push it to the back of our minds.
Those of us without children or family who can help are frightened by a care future without informal help and where choices and decisions are made by people who don’t care about us.

Between 30% and 50% of us (depending on where we live) will fund our own care. We are a huge market in our own right, but we don’t get together, we don’t plan together, we act for our parents in a crisis when choices are limited, then bury our heads when it comes to our own future choices.

Glimpses of the future

There are some glorious exceptions to this bleakly painted picture. There are small community-based care homes and Shared Lives arrangements where people feel part of a family and of their local community. There are Homeshare programmes where older people with a spare room are matched with younger people needing accommodation and willing to offer help and companionship in return. There are community micro-providers (people providing care to small numbers of people in their village or neighbourhood) who can provide flexible consistent care and where it’s possible to build loving relationships. There are community and faith groups determined to make sure that people can stay in and part of their community if they need care. There are people choosing to live together into old age in co-housing arrangements. But these options are not mainstream.
There are amazing neighbours and friends who come together to help someone live their life their way, often unseen and undervalued. A wonderful solution for lots of people – but not available for everyone.

What we want

As older people and people thinking about getting older, we personally view many of the supports and services currently available for older people with dread. We believe that ageism can underlie the lack of aspiration for older people in many of these services. We want the kind of help that will let us stay part of our community, near the people we love and who love us, doing things that feel purposeful and knowing that we are valued.

Join us!

We have the power to shape and secure the kinds of services and support we really want for the people we love and/or ourselves as we get older. But first we need to come together.
We thought we would start by opening a space for conversations. Discussions around 3 key questions:

1. Experience: What is your experience of ‘care’ – either for yourself or someone you care about? What was/is good and what is not so good?
2. Aspirations: What kind of care or support would you want, for yourself or someone you care about, in an ideal world? What are your ideas? Please don’t limit your aspirations to the tiny range of options we can all currently see!
3. Allies: Who do you already know that is already trying to do things differently and might share their experience

We are looking for allies – organisations and people thinking about the kind of care they would want for parents or themselves as they get older – to begin to have those conversations and help create a movement for much greater choice in the services and supports available for people in older age.
If that sounds like you then get in touch. We will send you more information about possible next steps together with an easy way to share your answers to the questions. To get a ball rolling just send us a mail just to say ‘I’m in’ and we can take it from there.

Our emails are:
Sian sian@wigo.org.uk or Angela angela@wigo.org.uk

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