LET ME BE AN ADVOCATE
What’s an advocate? According to one of our stroke champions Rajadurai Balasingam (a legal advocate or lawyer), it is someone who cannot shut up.
Many strokees do not take control or make decisions for themselves. This is a problem, as many are so dis-empowered that they are unable to set their own goals or choose what they would like to do.
There are some reasons as to why this happens and sometimes, it is beyond their control. Therapy can help:
- Difficulties in communication (understanding, word finding, voicing)
- Issues with cognition, such as memory, insight and executive functions like emotional
How It Begins
Caregivers and family members are also responsible for dis-empowering the strokee. They also have issues with goal setting. “I wasn’t even allowed to choose my food while I was in hospital,” lamented one survivor. “My mum ticked the food menu for me...”
From the moment they suffer a stroke and are admitted into a hospital, a strokee practically loses
all control and opportunity to make decisions.
They are TOLD:
- What to wear (hospital gowns, diapers… the
list is endless) - What to eat (whether soft diet, low fat or
traditional herbs…) - Where to go (get out of bed NOW, shower
NOW, therapy NOW…) - What is good for them (by every well-meaning
friend, relative and neighbour. You MUST go
to this acupuncture, try this massage…).
Even when they finally get home, the “instructions” continue to be thrown at them.
Can you imagine weeks or months later, what happens if we suddenly ask the stroke champion
“What would you like to do today?” or “What is it that troubles you the most?”
How To Empower Stroke Survivors?
Recovery is best when the strokee is the driver and badly wants to get over this challenge. I advocate giving our stroke champions at NASAM a voice /choice/and options.
How about asking them what they want? See if they will respond. We can always start with simple questions such as:
“What would you like to wear today?” Or “What would you like for breakfast?
Re-phrase your question by asking: “Would you like to…?”
Also be prepared to respect their choice to refuse.When this happens chat about something else.
You can bring up the issue later when the strokee is in a better mood. You can ask why there was
a refusal earlier, what was the reasoning. This helps the strokee to understand that he or she can
choose to accept or refuse. And that it’s perfectly alright to do so.
Empowering and facilitating recovery also means providing information on request, as opposed to lecturing, nagging or shouting. A strokee who is forced to do something will be slower to recover.
If we can empower strokees to have a voice, they can become the most powerful advocates of stroke prevention. These stroke survivors can raise their voices in advocating for better healthcare, rehabilitation and prevention. Raising awareness about stroke can help in better management of stroke in Malaysia and facilitate the goals of universal healthcare for all.