Helping to piece things back together again
The invasion of a Stroke or Head Injury on your life is likely to lead to some kind of “loss”. This could be loss of aspects of your memory, movement of a part of your body, the ability to find the words that you need to use explain yourself, or a devastating combination of several of these losses. Often, however, many of these loses return through hard work, dedication, courage and a significant length of time. Sadly, it also has to be acknowledged that some of the things that a neurological injury has robbed you of may remain more permanently lost. It is in these situations that we sometimes find remarkable ways of compensating for these losses.
Imagine your life was made up of hundreds of little puzzle pieces, each piece making up a small part of who you are. Some pieces make you a mother, others make up what you do for a living and there are many, very important pieces, that allow you to do important everyday things that we take for granted. Working with people who have survived severe strokes and head injuries has taught me the precious value of being able to articulate oneself in meaningful words. Even the ability to step out of the shower every morning involves a neurological wonder. There are so many of these tiny pieces of our neurological puzzles that make up who we are and allow us to do the things we do so seemingly effortlessly in our everyday lives. Suffering a stroke or head injury is like having the puzzle of who you are suddenly smashed into tiny pieces. Recovering from this is a slow and painful process of trying to place the pieces that you can still find back together again. And, unfortunately, there are some pieces that you might lose forever.
People suffering from brain injuries seem to have the experience of saying goodbye to an old life and of having to learn how to live a very challenging and uncertain new life. The severity of a brain injury can vary greatly from person to person, but even people who have suffered mild damage might become incredibly frustrated with their minor limitations. Simple things that you used to take for granted, like making yourself a cup of tea, can become incredibly difficult. This can leave you feeling very helpless; that you are a burden to others or that you are not a “real person” anymore. A mother who struggles to make her son sandwiches for school in the morning might ask herself “Am I still a real mother?”, or a father who might not be able to physically protect his family from a burglar might ask himself “Am I a real man, now?”.
The way that we care for people who have suffered a brain injury can make a significant difference to how they feel about themselves. I find that although the stroke has already robbed them of so much of who they are, we often do or say things that contribute to this assault on who they are. Carers tend to get in the habit of treating the injured in ways that remind them of what they have lost rather than encourage them to make the most of what still remains. In reality, many of the people we work with still have most of their puzzle pieces in-tact. Therefore, the best thing that we can do for them is to help remind them of the pieces of their puzzle that they do still have.
Here are some tips that might help you achieve this (adapted from Jill Bolte Taylor’s “40 things I need the most”):
- I am not stupid, I am wounded. Please respect me.
- Come close, speak slowly, and clearly. Repeat yourself – assume I know nothing and start from the beginning, over and over.
- Be as patient with me the 20th time you teach me something, as you were the first.
- Be aware of what your body language and facial expressions are communicating to me.
- Make eye contact with me and speak to me rather than about me.
- Make physical contact with me and let me make physical contact with everything around me.
- Realise that I need an unusual amount of sleep.
- Stimulate my brain when I have the energy, but know that I get tired easily.
- Teach me by showing me and trust that I AM trying.
- Give me time to answer your questions.
- Don’t decide on how clever I am based on how fast/slow I can do things.
- Encourage me. Believe I will get better no matter how long it takes and trust that my brain will continue to learn.
- Break things down into smaller steps and make it clear to me what we are doing.
- I might pretend to understand more than I do, I don’t want to make a fool of myself.
- Focus on what I can do, rather than on what I can’t.
- Remind me about who I am and what I did.
- I might have lost many of my functions but I have also gained things like “courage”.
- Help me, protect me, guide me but don’t stop me from becoming more and more independent.
- Don’t resent me for not being who I used to be or for not being able to do something.