My mother

Text by Yolande Naggar, caregiver at AQA 

In addition to being a prisoner of her paralyzed body, my mother is also dependent on a health care system that does little to recognize aphasia and its various aspects as a distinct disorder.

His language, composed of signs, anger, joy, fear, sadness, impatience, and fits of laughter, tends to become clearer day by day. He is a person in his own right and magnificently alive, despite his aphasia and paralysis.

"pull the chair back; I want to go to my bed; I would like to be changed; I am afraid, the sidewalk
is broken, I am hungry, I am thirsty; I do not want to enter… This last sentence can designate several things depending on the context”

Her disjointed words, her letters written with her trembling left hand, her enthusiasm for doing the exercises suggested to her at the fitness center, for participating in group activities in her living environment, for smiling, greeting and thanking the people who are concerned about her well-being... Everything she is encourages me to welcome the present moment, to have courage and perseverance in my own life.

As I learned during the meetings with the speech therapists at Sappa, I try to have pencils and papers in hand regularly, in case I don't understand her or can't make myself understood by her. Sometimes she pushes them away, other times she scribbles letters that look like words... No matter, I start again when she is less tired, more receptive. So that she can regain confidence in her left hand, the only one she has left and the one she was deprived of for so long. Only the right hand was allowed for writing at the time.

In my caregiver group, initiated and supervised by SAPPA speech therapists, all the participants are courageous women, sharing similar issues related to a loved one with aphasia. The communication strategies and scientific research reports made available to us are very useful to me in identifying the type of aphasia and improving my exchanges with my mother. There is no pressure to perform. Instead, we are encouraged to communicate with our loved one as naturally as possible. This welcoming and non-judgmental meeting place reassures me and does me a lot of good. In addition, I learn to respect my limits, not to be afraid of making communication errors, to start over or seek help if necessary.

My only wish for my mother is to know that she is well, as much as possible, as well as safe, with the minimum of pain and able to express her needs, in one way or another. When she sings, when she dances by zigzagging her hand to the rhythm of the music, I know that she is happy. I do not always have the words to reassure her when she is afraid, but I believe that she knows that she can count on me until the end of her journey on Earth and not on the planet Taire… When she shows me affection by holding my hand, for example, during a TV show, when she welcomes me with a burst of joy during a visit, I am moved and happy to know that my presence is good for her. My mother and I are living proof that there is always time to improve a relationship.

Thank you, dear SAPPA workers, for supporting me, encouraging me, and valuing me in my role as a caregiver. Thanks to your work, my relationship with my mother has become more than a caregiver-care recipient relationship. It is composed of pleasant exchanges and listening most of the time. Thank you also for all the research work you do, in parallel to having aphasia recognized by our governments as a distinct speech disorder that deserves special services and is necessary for a good quality of life. Thanks to all of you, I feel much more equipped, well supported and welcomed as I am. You are very precious to me! I hope that more and more people with aphasia and their loved ones can benefit from your various approaches to welcome it as a new reality that can be tamed and adapted to their lives.

Finally, thank you to me for continuing to take care of myself by seeking the necessary resources. Which allows me to better help, in turn, my mother and other people. I am convinced that this is what my mother wants most for all her children, their well-being. Our relationship is enriched in quality a little more each day.

We all have an interest in communicating better. Both to prevent or slow down the various disorders related to aphasia and to enrich our relationships in general. These are the main reasons why I am very pleased to share this text, as a testimony of my own experience.

Many thanks for your attention,
Yolande
Caregiver

To find out more about our activities for people with aphasia and caregivers:

• Would you like to consult our calendar for people with aphasia? here.
• Would you like to register for our workshops for people with aphasia? here.
• Do you want to know more about aphasia? here.
• Would you like to know more about our workshops for caregivers? Click here
• Would you like to consult our calendar for caregivers? here.
• Would you like to know more about our workshops for people with aphasia? Click here