I have often participated in debates about care for older people in the future. But then, when it came to 2030 or 2040, it was a long way off for me and the discussion was about other people. But now, now it’s different. When we talk about 2040, I will be 84 years old. It could well be about my future! It hits close to home. But even then it’s hard to imagine what it will be like.
I have tried several times to imagine what it is like to be dependent on care. I’ve spent 72 hours as a client in a nursing home. I have been through the Into D’mentia simulator and experienced what it is like to have dementia and I have been in the Participation Clinic. These experiences tell me more about my future than all the reports and discussions put together.
Managing your life
I learned that if you are dependent and want to have some control over your own life, you need to be able to think ahead. You don’t want to have to ask for something every moment from someone who isn’t even there. So you have to be able to plan. But that’s precisely the problem. Having an overview and being able to arrange your life is exactly what is so difficult. Fortunately, I have also felt that I am quite willing to relinquish control if I no longer have oversight. As long as I can trust that the other person knows me well and has my best interests at heart.
I have also found that being at home for as long as possible is not necessarily the best choice for me. If there is no one around, that is nothing for me. Company is nice. But a good conversation is difficult if you can’t understand each other because you have poor hearing and the other has aphasia. Tedious. In that case it is nice to play bingo with a group of people: you do something together, you have a simple conversation and it is nice if you can help each other.
“I would never have known all that if I had just kept on doing panel discussions.”
I would never have known all that if I had just kept doing panel discussions and reading reports. The experience really adds something. When you put those experiences together, it’s really about three things: being able to be yourself, having meaningful social contacts, and being useful to others. All that, in spite of your limitations. It sounds nice and abstract. But how do we make this tangible with the current and future shortage of care workers, a lack of suitable housing and care that threatens to become unaffordable?
What I really need is someone who is truly committed if I don’t have relatives nearby: a case manager, someone with primary responsibility, a caregiver, a good neighbour, or a friend. Someone who helps me make good choices, who coordinates with care providers and helps me organise my life so that I can be myself as much as possible. I don’t have to stay in my current home until the end. Living somewhere else is also possible, as long as I can feel at home there, that there are people I can relate to. They don’t have to be my friends, but it would be nice if we could meet up once in a while, have a chat, drink a beer or play a game of bingo! That we mean something to each other and miss each other when someone is not there!
I would also like a robot-butler. To fetch or carry things, remind me of what I need to do, organise the day and keep an eye on me a bit. A Japanese toilet would also be nice! I also value video calls with my loved ones, my significant contacts. And a proper service dog. That seems nice and useful to me as well. In short, I don’t need all sorts of strange people around for this and that. With good technology and an animal friend I can also be myself.
But without help from real people, it doesn’t work. First of all, I don’t need all my problems solved professionally. I don’t want my whole life to revolve around being dependent. I’ll take some things for granted. I will be thrifty with the professional people I need. But I do have questions. In principle there are enough people for the healthcare sector. But whether they are willing and able to work effectively remains to be seen. And will I show solidarity when it comes down to it? Will there be competition for the most desirable workers? And will the most attractive employers win that battle? And will I, with my good pension and a house that I can leverage, end up ‘stealing’ away care workers from less fortunate peers? Will we have a survival of the richest?
Suppose more people or perhaps most people want to get to 84 the way I do. What should we do now and what should we invest in now? First of all, organise care and services like Lego bricks: they fit inside and on top of each other and you can vary them endlessly. It doesn’t matter whether the bricks are paid for by health insurance, taxes or private funds. However, someone has to help you with your personal Lego structure, though. The bricks must all be of good quality and accessible to everyone.
And the labour market? Good work is about good colleagues, good employers and good working conditions. Good terms of employment are not enough. Good management with a focus on employees and internal cooperation is also very important. And collegiality. Colleagues can make or break a work environment. Finally, the people who receive care and support. We say that they should be central. But you should also expect them and their loved ones to be reasonable and friendly to personnel. That they take them into account. This helps care workers to have and keep enjoyable jobs and to remain in healthcare.
And what will it be like in 2040? Will I then come out in a spoken blog as an expert by experience, telling people that I am doing well? Will I be able to tell with dignity and pride how I have fared in the years to come?
This blog was presented at the Dignity and Pride conference on December 6, with the theme Future of Nursing Home Care. Watch and listen to the presentation (in Dutch) on YouTube.