Honouring Ashley

Forty years ago, a tiny redheaded baby lay in an incubator after a difficult, long fight to enter the world. As I looked at her, I saw a baby with an incredible sweetness of spirit and a very strong determination. I had a strong sense that this child had a difficult journey ahead of her, and that she would need every bit of that determination.

My daughter loved to dance, was curious about the world, and passionate about peace and justice. It turned out she needed every bit of her courage and determination. From matric onwards, she gradually lost the ability to dance, to drive, to feed herself, and, most surprisingly, to stand up straight! By the time she completed a Masters at Oxford she was fighting to do the most basic activities in a day.

Her spinal cord gradually pulled her body into a curve until she could only see the ground. She could not sit, could not bear the weight of a heaped spoon in her hand, and could only stand in the highest high heels, perched on top of a two-inch block of wood and clutching a helper, who had to stand very still to avoid even the slightest movement which may shake her brain. The spinal cord was so tight that this was necessary to reduce the strain on it.

Finally a diagnosis of Cranio Cervical Instability and Occult Tethered Cord was made.

A very special carer was needed during her worst times.

Throughout my career as a social worker, I had experienced carers who came through agencies, trained in feeding, bed baths and medication, but who tended to sit beside her bed on their phones, with a narrow understanding of what their duties allowed. Worse still was the bossy attitude that sometimes came with years of experience, preventing them from understanding that my daughter’s symptoms were different from those of many other patients. One could not even gently wipe a facecloth over her, without causing pain.

We needed someone willing to abandon standard ways of doing things. Someone prepared to take half an hour simply to open the curtains because of her light sensitivity, and who understood the importance of not making even the smallest noise when putting something down.

Then Ashley, aged 23, came into our lives!

Quiet and polite, with some nursing training and a genuine willingness to care, Ashley understood that this job involved far more than normal duties. Although she could not fully grasp the extent of my daughter’s symptoms, she was willing to be flexible and understood that nursing care could not always be confined to standard procedures.

She would stand patiently, holding her arm at a very uncomfortable angle for as long as my daughter could cope, allowing her to look hungrily at the flowers we had planted outside her window, to absorb the sight before going back to a bed and four walls. This helped my daughter keep her arms close to her sides, avoiding any pulling on her spine.

Ashley understood that watering the plants outside the window was part of the emotional care my daughter needed, she was prepared to cook and blend the food until my daughter could swallow it teaspoon by teaspoon.

And although Ashley was so young, she did not run away when I occasionally lost it after yet another unhelpful, sometimes cruel refusal by a medical person to help us. Although greatly upset herself, she tried to comfort us.

Just over a year ago my daughter died and Ashley, now 25 years old, is working in a care facility in Cape Town, desperately trying to save enough money to study nursing in Zambia. Training is cheaper there, but her family is here…

We will always be grateful that this young woman came into our lives. She may not yet have all the qualifications she hopes for, but she already possesses something that cannot easily be taught: the willingness to see the person behind the patient, to adapt, to show compassion, and to care with her whole heart.

Pam Jackson, who is a DignitySA Ambassador, has identified Ashley as her palliative care hero. We know there are many more amazing carers like Ashley across South Africa. We think Pam and her daughter are heroes too and we are grateful that she shared this moving tribute so bravely with us.