A household with two people suffering a neurological brain disorder… I have witnessed much. I soon realized we have to rethink our attitudes toward illness and old age. Above all, we have to stop the cruel practice of isolation.
This may be the most important blog I will write. I only think of it and my eyes start to tear.
This is about how we relate to the ill. The infirm. The old. The less than fully functioning. Are we condescending? Dismissive? Infantalizing? I could go on … Often people act badly not out of malice but out of inexperience.
Some should know better. Many professionals come to see Shelly and do not even say hello to him. They say hello to me, smile at me. And talk not to Shelly but about him in the third person, he. How is he, what is wrong with him, what medications does he take. As if he, Shelly – the central player – were not here. As if he did not have human needs.
Sometimes the opposite. A super soft approach. Hello there. How are we doing today? We? Who is we? This may be some quaint formula to make the patient feel included. But it is more than bad grammar.
How about the old fashioned you? How are you? The boring you does a splendid job.
My rule is simple: whatever you would not say to your boss, a client, people close to you do not say to the patient.
The idea is not to diminish what is already diminished. But to strengthen what needs to be strengthened. To strengthen more what is already strong.
It takes so little to make a patient feel recognized, included.
Dr. Jordi has a special touch. He only has to say hello and Shelly is transformed. This is because his hello is in German. The language Shelly studied long ago. He feels a linguist again. He is reminded of his passion for languages. The fire that had moved him in his youth is still with him just as strong.
Sometimes our cruel actions cannot be helped. Especially when other people are around. A human thing happens. People want to talk. And they talk. Those who do not talk are not included, and ignored.
I am guilty of this sin as well. It pains me and I suffer when in company I talk around Shelly. If you are a caretaker you have to look a little more. You may have had your needs suppressed. Your system wants attention.
When we are with others we look for signals, signs of life, the attitudes we communicate. With Shelly it is impossible to know what exactly is going on with him. What he knows or doesn’t know. You would never guess that there is sophisticated life behind those seemingly inactive eyes.
Most illnesses are not as extreme. And not as devastating. Things may not be so, so hard. We only need awareness of how we act around the ill. So let´s relax and watch our grammar!
Thank you all. Anna
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You’ve put into words what I have struggled with for a while. My Dad had a massive stroke in May and has been hospitalised since. He is paralysed and unable to join in the conversation and I find my skin crawling each time somebody talks about him as if he weren’t there. One nurse even suggested that I was grieving and that it was natural to miss my Dad. That may be the case on some plane, but his brain injury means that he can’t appreciate higher planes and abstract concepts the way he used to.
As people stop talking to him, he withdraws further and appears less present; his self worth seems to be brought into question. As he withdraws further and appears less present, people are less inclined to try and talk to him.
My conversations with him are becoming less natural, more strained and “sing-songy” as I struggle to get him to engage and respond. His ability to do this seems to be deteriorating…
You are good to always remember the person you’re talking to, I struggle sometimes.
Hi Louise– it is a struggle sometimes because there is so much going on in the caretakers. There is love, of course, but there may be fear, pain, anger. It´s a huge experience for both sides. We are often so terribly helpless. It took me a while to accept what is happening as the ultimate human experience. There is no hiding. And no getting away. I am sending you a big hug.
Brilliant… your writing this was simply brilliant. Bless you Anna…you have a heart of gold.