Family ties are precious threads in our sense of being “Filipinos.” One of the strongest characteristics that define our culture is our closeness to our familial roots, traversing religion and superstition, festivities and cuisine, marriage and death. Families bond and keep their members together with great physical and emotional support regardless of their societal class.
This is also evident when families face major bumps in their milestones. Sickness is one of those difficult times especially in cases that deal with prognosis, survival and even long-term care.
Patience tested, stress over financial problems breaks spirits; and the inability to provide time and assistance during transition from hospital discharge to home care change the landscape of family caregiving. Sickness and the burden of taking care of a family member can never be trivialized.
Stroke is one of the medical conditions prevalent in the Philippines. In a bigger view, it gravely affects many families in the rural communities and underprivileged sectors. Although government hospitals and health care services are within reach in urban areas, considering the prevalence of stroke and other population in the country needing budget for other medical conditions, acquiring adequate support is an arduous path to take.
STATISTICS AND STROKE
Looking at stroke services in the country, cited in the manuscript “The Real Stroke Burden in the Philippines:”
“Stroke care is handled by 287 adult board-certified neurologists. This translates to 1 neurologist for every 330, 000 population, which is low compared with the World Health Organization recommendation of 106 neurologists per 100,000 population. There is an unequal distribution of major stroke healthcare providers, with as much as 67% of neurologists practicing in the highly urbanized centers in the country.” (Navarro, J., Baroque II, A., Lokin, J., Venketasubramanian, N., 2014).
Stroke, according to Navarro et al, is the “Philippines’ second leading cause of death.” It occurs when the blood supply to your brain is interrupted or reduced (mayoclinic.org). In a matter of minutes, when oxygen is not supplied in the brain, brain cells start to die. As per the Navarro et al research, 30% of stroke patients in the Philippines suffered from what we call ischemic stroke (a stroke caused by a blocked artery) while 70% Filipino stroke patients suffered from hemorrhagic stroke (leaking or bursting of a blood vessel). Age-adjusted hypertension, diabetes, smoking and obesity were likewise cited in the study.
AFTER STROKE AND APHASIA
Every stroke is unique but it tends to affect people in similar ways. Depending on which part of the brain has been affected, people who survived stroke may either have mild, moderate or severe challenges – physical, communication and emotional and behavioral. If the stroke is in the right brain, the left side of the body (and the left side of face) may be affected, which could manifest any or all of the following: vision problems, paralysis or weakness on the left side of body, quick or inquisitive behavioral style, and memory loss. Meanwhile, if the stroke occurs in the left side of the brain, the right side of the body will be affected manifesting paralysis or weakness on the right side of the body, speech and language problems, slow, cautious behavioral style, and memory loss (strokeassociation.org).
Neurologists, rehabilitation doctors, physical therapists, occupational therapists, speech language pathologists, communicative disorders assistants (in other countries), nutritionists-dieticians, and the like are just some of the core team of professionals that support the family of the stroke survivor as he/she transitions back to the community.
Amongst the concerns mentioned, one that further frustrates stroke survivors and their families would be the challenges in communication – breaking it down to actual speech production and language that are essential in keeping close family ties.
How do you communicate basic needs and participate in the planning of your own life if you have difficulty communicating with your family? How will families know exactly the type of care that you need if they have become frustrated in getting the message in and out?
Aphasia is the term used to describe the communication disorder that results from damage to the language faculty side of the brain (left side) causing difficulties in speaking, listening, reading and writing. However, IT DOES NOT AFFECT INTELLIGENCE (asha.org). Hence we say, “persons with aphasia” rather than “aphasic patient” to remind us as well that aphasia is not them but is something that happened to them because of the stroke. This too is what we want to make our loved ones see — that they did not lose themselves, their intelligence, dignity and personality because of aphasia.
Stroke survivors with aphasia may have difficulty in accessing words (word-finding), producing volitional speech (difficulty putting words together to form a sentence), auditory comprehension (understanding words, directions and stories spoken), verbal expression and writing (spelling, maintaining space and size, putting words together).
In a nutshell, aphasia means you know what to say but you can’t say it. Hence, when we see a person with aphasia who is struggling to make out the words and looking frustrated, we try to calm them down and tell them: “I know what you want to say, I know that you know this, but you just can’t say it… let me help you.” I will write about aphasia and speech therapy in detail in my next column.
HELPING THE HELPERS
Classified as an invisible disability, aphasia is not well known or understood in the community. Families taking care of their loved ones with aphasia may need to apply communication strategies that can help them and their loved ones communicate better and maintain good relationships.
Below are just some helpful tips and communication strategies you can use when communicating with a person with aphasia:
1. Get the person’s attention before you start speaking.
2. Maintain eye contact and watch the person’s body language and use of gesture.
3. Minimize or eliminate background noise (TV, radio, other people).
4. Keep your voice at a normal level. Do not speak loudly unless the person asks you to do so.
5. Keep communication simple, but adult. Don’t “talk down” to the person with aphasia.
6. Simplify your sentence structure and emphasize key words.
7. Reduce your rate of speech/talking.
8. Give the individual time to speak. Resist the urge to finish sentences or offer words.
9. Communicate with drawings, gestures, writing, and facial expressions in addition to speech.
10. Encourage the person to use drawings, gestures, and writing.
11. Use questions answerable by “yes” or “no” rather than open-ended questions.
12. Praise all attempts to speak and downplay any errors. Avoid insisting that that each word be produced perfectly.
13. Engage in normal activities whenever possible.
14. Encourage independence and avoid being overprotective.
15. Use pictures, small “communication books,” list of preferences and social scripts to help him/her communicate own ideas/choices.
Knowing that we can do something to help our loved ones feel better, mitigate chances of frustrations, and ultimately learn compensatory skills to elicit functional communication as part of stroke recovery can make a big impact in the adjustment and coping with the challenges surrounding after-stroke care.