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I hear the most terrible stories through support groups and from my own live-in carer, who is from the Philippines.
Stories of live-in carers being treated appallingly. Shouted at, humiliated, expected to work beyond reasonable limits, given unacceptable living conditions and, in the worst cases, physically abused.
I would like to believe these are isolated horror stories.
Unfortunately, the research suggests otherwise.
One Israeli study surveyed 245 Filipino home-care workers. Forty-one percent reported being verbally abused, 43% said they were asked to do more than their job descriptions required, and 40% said they did not receive adequate food. Almost half reported work-related injuries. The researchers also found that exposure to work-related abuse was the strongest consistent predictor of burnout.
A study of Filipino migrant domestic workers in Hong Kong found that, in the previous 12 months, 34.4% reported verbal abuse and 20.5% reported physical abuse. Abuse was also associated with higher levels of depression, and a significant proportion of those experiencing abuse did not report it formally.
Those are horrible numbers. And they make me think.
I fully understand that live-in carers can soak up an enormous amount of anger, impatience and frustration from both the patient and the family. They are standing on the front line of a horrible battle being waged against somebody else’s body and mind.
That may explain some of what happens.
It doesn’t excuse it.
Live-in carers do an incredible job.
Many leave their own families for long periods of time, often travelling thousands of miles and sending money home to support and educate their children.
And, perhaps just as importantly for families like mine, they give everybody else some freedom and space.
I tried to count how many times in a normal day I ask my carer to do something for me.
Get me out of bed. Put me back into bed. Take me to the bathroom. Make or heat some food. Take me outside. Help me move. Bring me something. Then there is my laundry, preparing food and all the countless other things that need doing.
And, of course, perhaps the most annoying request of all: finding my computer mouse, which, rather appropriately given its namesake, seems constantly determined to disappear.
I genuinely couldn’t count all the individual requests. It could easily be 50, perhaps 100 little interactions in a day.
That doesn’t mean my carer is working continuously every second. Of course he isn’t. But it does make me realise something very important.
When somebody lives in your house, the distinction between “my carer is here” and “my carer is available” can become dangerously easy to forget.
And that is probably one of the strange things about live-in care. Your home is their workplace. But your home is also their home.
They see you first thing in the morning and last thing at night. They see you when you are tired. They see you when you are frightened. They see you when you are angry.
And, particularly with an illness such as PSP, they see you at moments when you may be considerably less patient, less reasonable or less pleasant than you would like to believe you are.
I hope I never morph into the sort of person I am describing.
Perhaps this article is partly a reminder to myself.
My illness may explain my frustration.
It doesn’t automatically excuse where I direct it.
Of course, carers are not perfect either.
Like all of us, they have flaws and weaknesses. There will sometimes be personality clashes. There will be situations where the relationship simply doesn’t work and the carer needs to change.
That is inevitable when someone comes directly into your home and becomes such an enormous part of everyday life.
I didn’t want a carer. I fought against the idea for a long time. It is also a very serious financial expense.
But I am now truly grateful, both for what my carer does for me and for what having him here enables everybody else around me to do.
Because one of the things that is easy to overlook is that a live-in carer does not only care for the patient.
By taking on so many of those 50 or 100 little requests, transfers, meals, bathroom trips and missing computer mice, they relieve spouses, children and other family members of some of that burden.
They give people space. They give people time. In some cases, they allow family members occasionally to stop being carers and simply become husbands, wives, children or friends again.
That is incredibly valuable.
But carers deserve enormous respect not simply for the service we pay them to provide, but because they are people.
People with families. People who become tired. People who become frustrated.
People who need privacy, dignity, rest and kindness just as much as the people they care for.
I am certainly not in a position to judge how anybody else manages the incredibly difficult realities of serious illness and care.
I know how difficult those realities can be.
But perhaps that makes it even more important to remind myself of something very simple.
The person caring for me is not an extension of my disability.
He is a person helping me live with it.
