This paper reflects on supporting a loved one with motor neurone disease (MND).
In the present, I could only anticipate what would happen in the future. My mother had been my world, and I had to imagine a life-world without her being there for my family. She accepted the “givens” of being diagnosed with MND and was relieved to finally know what had caused her speech loss. I want to emphasise what this loss of speech meant to her and us all at that time. That once-familiar voice was gone. Communication was replaced by a pen and paper in the early months and then by a light writer. We listened to Professor Stephen Hawking responding to us through the light writer. I missed the phone calls giving me those words of wisdom, sometimes well received and sometimes not. She still looked the same, though she seemed to have lost those taken-for-granted facial muscles that enable us to smile, laugh, frown, and gasp. Her emotions were difficult to control; sometimes, she laughed inappropriately. She had tried to lose weight; without effort, the weight now dropped off her because she could not swallow many foods. Food was pureed: though it may have tasted the same, it was unrecognisable. Within months, she had gone from a size 16 to a size 10, never more apparent than the day she opened the door to me, finding it difficult to hold her balance while holding up her oversized trousers.
Reference:
Harris, D.A. (2017a) Supporting a loved one with motor neurone disease. Palliative and Supportive Care 15, 141–142
