Margaret McKenna's Story

My partner Una died just over four years ago. And she died within 19 days of them first mentioning cancer, so it was quite sudden. She also had Alzheimer's. She immediately went into palliative care in the hospital. They were unable to consistently stay on top of her, what became quite considerable pain. It was always a question of pain management. So one thing might be tried, well I mean whenever we got the hospice they seemed to try a whole array of things. In the hospital they did try various things. It was getting access to it that I found difficult. So, you got pain relief whenever it was due. You didn't get pain relief whenever you were in pain. You followed the system and the needs of the system took precedence over the needs of an individual in pain and a very confused individual in pain.

Dementia really aggravated an already very difficult situation. She was confused, she was in pain. Whenever she first went into palliative care in the hospital she was active. The hospital environments are not conducive to people with dementia so the bathroom said something like ‘showers’, which does not say this is where the toilet is. And she was very mild; I mean there's the stereotype of people with Alzheimer's being difficult. She was not difficult, she was just very confused, frightened, in pain. She had a lot of difficulty with noise so they very kindly, at one point, put her into a side ward. But sure whenever I went back in again in the morning they had her back in the noisy public ward because they had discovered her on the corridor; I imagine she was looking for the toilet. In a similar situation I would be more proactive. I would question more. I would hopefully make more of a fuss. I would keep going until I got results.

You see there is a difficult balancing act, you know, between am I going to make things worse if I'm a nuisance to them, or will she actually benefit from any intervention of mine? She was in the hospital in palliative care for nearly two weeks and then she was a week, she died in the hospice. Now the hospice were able to eventually get on top of her pain which meant that she died out of pain, which I will always be grateful for. She would have liked a more conscious death but, you know, at least she had one out of pain and she would have come home as well, except things were just moving too fast. It was all too quick, you know, and I appreciate that in the palliative care situation, but it wasn't just quick for palliative care staff it was quick for her, it was quick for me