My experiences of palliative care: Maureen
Maureen Jones has PH and her opinion and understanding of palliative care changed when she learned more about it.
“Now I feel I can be enriched by palliative care”
“Palliative care was first discussed with me about three years ago, during a conversation with the consultant at my local hospital. At that point, I didn’t feel I was at ‘that stage’.
However, a little later, following an oxygen assessment, I mentioned to the nurse what the consultant had said. She asked if I wanted her to get the palliative nurse from my local hospice to come out and have a chat with me.
I thought ‘well that’s not where I wanted to be’. But I agreed to her visiting me, and she asked if I wanted to then go and have a look at the hospice. I thought I had always wanted to be at home, but the hospice was an option if my daughters couldn’t manage me. I thought of the hospice only as for the end of life.
At my next visit to my specialist centre, they explained that hospice care for me was about quality of life, not necessarily just end of life. I returned home and started to review things. At a similar time, I read a feature in the PHA UK’s magazine about palliative care, and I started looking at it in a different way. I could see it was positive, and not just about end of life.
My district nurse looked into services at the hospice because I thought if there was a day centre it would give me some mental stimulus and enable to me to meet people. I was thinking about quality of life.
Reading an article in Emphasis [PHA UK’s member magazine] was a trigger for me to embrace palliative care. If I had more information, I would have accessed the care sooner.
Now I feel I can be enriched by palliative care. It is not about dying; it’s about adding quality to my life, and I definitely see the involvement of palliative care as a positive step.
We have been conditioned to believe palliative care is only about dying but try to look at it as part of your support. Do not be afraid of it; embrace it.”