The impact of aphasia is also felt by partners, friends and family. Below are the experiences and words of guidance from two supporters of people living with aphasia in Western Australia.
Read on and you will also find some links to useful websites.
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The very nature of aphasia means the person with aphasia’s communicating world has instantly quietened.
Aphasia doesn’t usually introduce itself with much warning, so the realisation of how life needs to be adjusted to move forward can be overwhelming, isolating, confusing, frustrating and lonely for both the person with aphasia and their supporter.
You may have to adjust your lifestyle, ‘manage’ many social situations, take on more decision making and responsibilities and gain or cease/change employment to cope with your new supporting role. It isn’t easy, but you’re not alone.
Below are some ideas and coping strategies that work for me and my family.
It’s important you embrace your new role as a supporter of a person with aphasia;
Slow your pace in the world a little. You will need patience around a person with aphasia;
Accept any help that is on offer or ask for that help. The kindness of people is both comforting & motivating;
Your person with aphasia needs to know you are right there with them, always;
Break the ice in social situations. Friends/family/strangers can find it hard to know how to adjust their communication with a person with aphasia. Give them some instruction / explanation or gentle guidance.
Let the person with aphasia be ‘in charge’ of their own communication as much as possible. Encourage & facilitate their social interaction with others;
Be realistic. Fatigue for a person with aphasia is real and needs to be catered for;
KEEP YOURSELF HEALTHY & WELL! Make time for yourself however difficult this is to arrange. Talk to a friend, exercise regularly, have a quiet cuppa outside in the fresh air.
Try to ALWAYS remain positive & encourage the person with aphasia’s efforts.
What is a carer? A definition of “carer” in the dictionary states:
A carer is someone who is responsible for looking after another person, for example, a person who
has a disability, or is ill or very young.
This is a rather bland definition and I will use my preferred term of “companion” in my story.
My companion journey started when Jill collapsed in the shower. This was caused by a severe stroke.
Our world changed completely. For me it was straight into taking the lead in all aspects of our lives together. Do we train for this like we train in other areas of our lives? No.
In the previous forty years of our life together, Jill had always had control of our finances. Immediately these responsibilities transferred to me. I visited our bank to learn how to gain electronic access to our accounts and ensuring our regular payments to services were made. I also took on the house cleaning, laundry and cooking. This was all done during the period of visiting Jill each day in ICU.
I have not held Jill back from tackling new problems and experiences such as meeting new people and friends. Visiting a restaurant and ordering food was another hurdle for Jill, but she overcame it. All of these were challenges but giving them a go demonstrated that having aphasia does not limit your lifestyle.
Stroke Foundation (Aus) https://strokefoundation.org.au/
Enable Me https://enableme.org.au/
Australian Aphasia Association https://aphasia.org.au/
Aphasia Victoria https://www.aphasiavic.org.au/
National Aphasia Association (USA) https://www.aphasia.org/ .
This organisation has an aphasia caregiver guide: https://www.aphasia.org/aphasia-resources/aphasia-caregiver-guide/
Stroke Foundation (UK) https://www.stroke.org.uk/
Aphasia New Zealand Charitable Trust: http://www.aphasia.org.nz/aphasia/
