"My spouse's final days"

My spouse presented to another hospital's ED recently where they were treated as an individual, their name was used when talking to them. They were seen very quickly and an urgent MRI was organised. My spouse's diagnosis was devastating and we were eventually transferred to Sir Charles Gairdner Hospital the next afternoon for surgery for a Glioblastoma.

My spouse was admitted, and in Neurosurgery High Dependency Unit (HDU), it took persistence for me to find out where my spouse was as I was told they were not on the system. I presented to reception & they sent me to the Emergency Department (ED). I ended up asking my spouse to give the nearest nurse the phone so they could tell me where they were.

My spouse was moved very quickly from HDU to a room opposite and the Clinical Nurse Specialist who was thorough and compassionate as were the nurses.

Decisions were made a few days later to operate on a presumed Glioblastoma on the following week. In the afternoon I told the nurse that my spouse's hand was squeezing me as in a spasm. I believe it was noted.

I took a call from my spouse on that night, distressed and rang the hospital back to ask if someone could check on them. The nurse agreed and I didn't hear any more.

The next morning I walked into their hospital room early in the morning and there was someone else in my spouse's bed. This was shocking.

I found a nurse who informed me my spouse had 'crashed' and was back in HDU. I didn't know what that meant. No one told me or rang me but they had time to clean my spouse's room and fill it with another patient. No one explained when or how this happened.

Isaac was the nurse in HDU and he had met my spouse before, he was very kind. They prepped my spouse for earlier surgery and I got to speak to the surgeon before they went down.

I asked that Do-not-resuscitate (DNR) and no heroics were to be undertaken and I believe the registrar for the doctor understood what I was saying and later brought me a drink of water. This was very kind. I spoke to my spouse about what I had said to the doctors and asked Isaac to listen to the answer and they did. My spouse did not want any heroics.

The phlebotomist tried to take blood - they were very caring & visited us several times over the next couple of days.

I was rung up 15-20 minutes after my spouse went into surgery as there was new information and some confusion over my instructions. A doctor spoke with me and we met in the nurses' station to talk about options. The damage from the bleed was too much and I asked that my spouse be brought back to the ward. I understand this was difficult for doctors to hear as they wanted to operate. I felt they respected my decision and I knew this would mean palliative care.

The palliative care team (Karen) were very good and we made plans for our children to arrive from interstate and overseas. The team kept my spouse well until our children could get there.

I understand specifics are hard to give people when you are dealing with complex medical issues. I read between the lines of medical conversations to know that we did not have a lot of time.

My spouse was able to hear our children when they came, the nurses were very caring and empathetic. They were kind to me and my family, Gemma, Molly, Mia, Isaac and on night shift Tony & Lubecki, (sorry about the spelling of this name). The Clinical nurse specialists Loretta and Jo were terrific.

My spouse came home after their diagnosis shortly after midday and died that evening. Their machine, designed to provide pain medication had its batteries changed at the hospital before leaving and was not working when Silver Chain checked 2 hours later. They started the machine again and I believe the supervisor did not approve an additional dosage of morphine. I felt that was not a good decision.

My spouse died at 6.30 that evening, very calm and wrapped in our love. I think there are some very good lessons here and generally, we had outstanding service from very busy nurses and doctors. I am grateful for that.

I would, however, like to know the timeline of my spouse's deterioration from Monday evening to Tuesday morning. They were a complex case with diabetes, brain tumour and bleeding. I do not know when they moved to HDU or why I was not contacted.