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In Limbo

I was supposed to y to Australia on Saturday, but my visa did not arrive. It still has not arrived, it is now Monday. I have missed the conference at which I was to present a paper. Hotel bookings, flight changes, and conference registration fees – are gone. And I wait…

I could not help but think of the millions of older people who are at the mercy of bureaucrats on a daily basis. Waiting for the pharmacy to deliver medication, waiting for the results of medical tests, waiting at a clinic for the entire day without being helped, waiting for their food, waiting for someone to take them to the toilet.

Somehow, today, it dawned on me how dreadful it is to have to wait without knowing how long it will take…

Recently I had a biopsy and had to wait for the results – it was terrible. My doctor was very kind to phone me the second he got the results, yet I hear of so many people who have to wait for weeks to get results for a biopsy. The feelings of utter helplessness, having zero autonomy, and not having a clue when you will know what is going on. More than that, the feeling that you do not really matter, that what is important to you is only important to you and to no one else. One feels robbed of your dignity. Suddenly you realise that you are actually just a number.

One of my many pet hates is when people do not inform a person living with dementia of their planned course of action. Even as simple as “I am here to help you to take a bath”, or “I am here to take your blood pressure”. Simple, yet people often assume a position of power where they do not see the need to inform those “lesser beings” of what they intend to do. They are in control, they know what you need, and you can wait for them to do it. No questions. Somehow it sounds trivial and petty until you are on the receiving end of this behaviour. Suddenly, I feel outraged. How dare they? Do they not know about my conference? Do they not know how much money this has cost me? Do they now know…? Well, do “they” actually care?

As we grow older, we seem to become more and more invisible. There are so many assumptions being made about us, what we need, what we want, how we feel, and how we should feel. No wonder so many older people feel that they are a burden and start withdrawing or feeling terrible about asking to be informed. We have the right to be informed, always. Yet, when we get older and slower, people often assume that we no longer want to know, that we no longer care. That we leave ourselves at their mercy because “they are the experts”. And we like lambs to the slaughter allow medical procedures, medication, and interventions to be thrust upon us, sometimes with dire consequences. Because we simply do not matter anymore.

We all need to have an apprenticeship for this Eldership phase. To learn to be integrated, to know who we are, and to demand to be informed, consulted, and negotiated with. I see this all the time in my world – older people being shunted from pillar to post in a system that has no idea of the impact of their power. It is nothing short of the worst form of bullying! Whether this is your children deciding about your nances, your place to retire, the way you drive your car, the way you do your hair or apply your make-up or spend their inheritance. It is time for Elders to rise, to stand tall (even if it is with the help of a walking stick) and fight the system. And it is for us in our 50s to embrace our apprenticeship…

What kind of an older person are YOU going to be? We all become more of who we are as we grow older. But you can change. You can decide to be different, to demand respect (to hell with earning it – we all deserve it), to insist on being informed, to insist on being seen and heard. Too many bullies get away with their behaviour because they are not being called out. As a paying customer, you have the right to demand to be informed, to be treated with respect, and to be heard. Start practising now. Learn to use your voice, demand!

Of course non of this with help me with getting my Australian visa any sooner. But I have learned in this process what it feels like to be acted upon without having any power. It is not a feeling that sits well with me, and I am more determined than ever to give people a voice, especially people living with memory loss. It is a basic human right to be heard, to be respected, to be informed.

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