They had been a team for many years. It all started when they married. They raised their children well, and eventually became grandparents. That’s when everything started to change. He started to lose his memory to Alzheimer’s Dementia, his body was still in good working order. She started to lose control of her body to Multiple Sclerosis, her mind was still in good working order. They managed to cope well, making up for the other’s disabilities. She was the brains of the team and he was the brawn. They did well for the first three years and then their illnesses took away the last of their independence.
His cognitive impairment worsened and one day he decided to leave the house by himself. He drove off leaving her and the children to search for him. They called the police to help, but he could not be found until two days later. He was befuddled and unkempt when they found him. His main job before retirement was as a taxi driver. Despite his various impairments, he could still drive safely.
Her physical ailments worsened. She had become doubly incontinent and now needed full assistance with her activities of daily living. She suffered from recurrent urine and chest infections, which required hospital admissions. She had needed to be admitted three times in the past six months. The hospital team had asked her to complete an Advance Care Plan – ACP on the previous admission. This had been a difficult exercise but an important one. She was able to make it clear what she wanted and didn’t want. She had decided that if she developed another life-threatening infection, she would not want anything apart from comfort treatments.
I met her during the current admission. She had become unwell over the past week with aspiration pneumonia due to her poor swallowing. Fevers and shortness of breath were the main symptoms. Though the ACP had been completed and loaded onto the hospital system it was still ignored. IV antibiotics were given as well as fluids. When she woke up she was angry that her treatment wishes had been ignored. She had spent a lot of time preparing her ACP and it gutted her that it seemed to have been a futile exercise. She made it clear what she wanted and did not want. She asked for all treatments to be stopped, she had had enough.