The pain of a parent’s death from MS

My mother died of multiple sclerosis in 2004, after a hideous decline in her health that gradually robbed her of all the faculties that had made her who she was. The latter stages of the disease are particularly cruel. It gradually erodes the body’s nervous system, wiping out every aspect of a person’s being as it progresses.

Mum disintegrated before us over a period of eight years. Her vision went first, her bright eyes dulled and shaky and useless for everything she once loved. Gone were the coordination to play tennis and the ability to read without severe discomfort. Driving was out of the question. Her eyes drained of hope as her mobility deteriorated. Mum’s faculties then slid so sharply that she could do little safely for herself other than move from bed to couch and back to bed again.

The underlying pain of which Mum complained grew worse. Her cognition and memory failed her, then her motor skills evaporated, to the point that she had to be fed by hand and was strapped into a chair to prevent her sliding to the floor. Incontinence followed, and, deprived of speech, she was unable to communicate the source of her discomfort on any given day, leaving nurses to make educated guesses as to what was causing her to groan and grimace.

Respect and love
It seems cruel to enumerate the ways in which MS makes people suffer. This is the pain that Marie Fleming sought to spare herself, quite understandably. But hers was not solely a selfish act: she also sought to spare her family.

Fleming showed the depth of her respect and love for her family by refusing to put them at risk in carrying out her wishes. She did not want others prosecuted for assisting her in ending her life.

Watching a loved one suffer and die is scarring. I lost one parent suddenly, and the other slowly, and for me the latter was far more painful. Visiting my mother as she languished in ill health was like attending her funeral every day.

The feeling of helplessness, of all-consuming guilt that there was nothing I could do for Mum to lessen her agony or speed her out of it, was maddening. Some days I would sit in the car park for 15 minutes, seeking the strength to enter the nursing home where she was cared for during her last 18 months. Some days I couldn’t bring myself to go inside. On those days the guilt was deeper than ever.

We watched as doctors did their best, but her last year and a half on earth was wretched, upsetting and futile for her and for all of us. Mum, for various reasons, lacked the mental strength to fight in the way that Fleming has fought, before she slipped too far.

I know, however, that had she been able to wind back the clock, in full knowledge of what she would face, that she would choose an early and dignified farewell, supported and surrounded by all of us who loved her. This is a scenario she discussed with my sister and me, but it was legally impossible for us to act on her wishes when the time came.

The Supreme Court has effectively mandated that Fleming, and all those like her, must suffer until they die.

People with terminal degenerative diseases have few options when it comes to shortening their physical torment. People with MS cannot control the manner in which they die. They must simply wait.

Our family’s options were limited. Had we been able to get Mum’s wishes in writing prior to her illness taking full hold, that might have opened other avenues to us.

As it was, all we could hope for was for Mum to be comfortable, calm and cared for. We had that, to an extent, and never had to engage with the State or the courts. To think that this makes us the lucky ones, comparatively, is rather depressing.