Continuing our series today, we hear from Anne Molloy, a member of Voices 4 Care, the All Ireland Institute of Hospice and Palliative Care’s user/carer panel.
My father died in August 2011. He had been diagnosed with stage 4 leiomyosarcoma that had spread to his lungs and bones and caused him frequent, excruciating pain.
It’s hard to know what to write about the experience of caring for someone you love as they die.
I could write about the day before he died, when two care workers turned him with all the care and compassion of someone packing bags in a supermarket, while they chatted to each other about the traffic on the journey into work.
I could write about the time when the consultant announced that the cancer had spread again, while my Dad was listless with a high fever. I was left to try to figure out if he had taken in the news.
I could write about the time I was worried that my Dad’s catheter was coming off. When I asked a nurse to check it I was told, with a long sigh, that it wasn’t her job as she had finished her shift.
I could also write about the kindness of the hospital kitchen assistant who saw his fever and brought frozen bottles of water to help him cool down.
I could write about the home care nurse who got to know him and respected the fact that he didn’t want to talk about being sick or dying.
I could write about the nurse who chatted to him cheerfully and lovingly even though she couldn’t know if he would notice, as in his last few days he was under heavy sedation.
I could write pages of moments like these. They are small moments but I think of them often, even now, three years later. They have become my memories of my father. I’d prefer to think of happier times, before cancer, but the memories of his last few months dominate.
I often wonder what I could have done differently in these moments. It was easy to show gratitude to people who showed compassion. It was difficult to know what to do when I saw insensitive, indifferent, inappropriate care. I wonder why I never complained or objected. When you are drained from months of watching your loved one suffer, how do you tell someone who is overworked, tired or stressed that you are not happy with the care they are providing?
Yet, how can standards of care improve if there isn’t feedback on the experience of care – if insensitive care is met with indifference, if compassionate care isn’t commended? But how can things change if the only people who hear about these experiences are friends and family, and not the people who deliver the care. Perhaps the first small step is to share my story with you as the professionals who do deliver the care. I know there is a commitment to improving the practice of palliative care.
Read more ‘Palliative Stories’ on the EAPC blog
We shall be publishing more stories each month. If you missed the first two posts in the series, please click here. If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.
If you’re coming to Copenhagen…
If you’re attending the 14th World Congress of the EAPC in Copenhagen, please come along to the session on ‘User involvement in palliative care – do we need bridges between the knowledge of professionals, patients and relatives?’ on Saturday 9 May at 11-12.15pm (parallel session 11). Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015