"My mother passing away"

My mother died on the 12th of November 2020 at 16:55. Prior to dying she received palliative care at my home address.  

My sister has already written in regarding the outstanding care and consideration given my mum during my mum’s end of life care, from the District Nurses from the Pitlochry Community Hospital. I mirror her sentiments. They were absolutely fantastic in their care for my mother. They were empathetic, kind and caring. 

The day District Nurses told us to call the  out of hours District Nurses and they would come and assist. That they would be updated on my mum’s condition. They said even if my mum had slight discomfort to call the out of hours district nurses. They said that the out of hours district nurses would come from Perth (40 minute drive away).

Unfortunately, I had to call the out of hours team and the experience was awful, I quickly got the sense from their questions that they did not want to come to my house. Her tone and manner were inappropriate given my mum’s situation and that it was end of life care. She said they needed to assess my mum’s condition; they would need to book a taxi if they were coming to see my mum and that’s why they were asking these questions. I told her that she was asking me to assess my mum and I was not medically experienced to do that. I became very angry with the district nurse.

As I was speaking to her and answering the multitude of questions, I was sitting next to my mum’s bed, her breathing, which was previously shallow, had developed into heavy, noisy and laboured breathing. Her breathing was so difficult that her cheeks were being sucked in until they both touched. I could not believe what was happening and why I was being drilled with question after question. I asked out right if she had a problem coming to my house. The District Nurse said she needed to speak with someone else and she would call me back.

I received a call from another District Nurse who, when I answered the call, immediately said that one of her District Nurses had just come to her upset because of the call she had just had with me. I was furious by this time. After a very strained conversation This District Nurse said there had been a misunderstanding and she would come out. She explained that they would need to book a taxi and would get to us. All this time I was sitting with my mum who was distressed in her breathing.

My sister and I moved my mum’s position, and this settled her. I called the out of hours number and I told them not to come out. I was told that they had already left in a taxi. They never arrived. The District Nurse had an I told you so tone in her voice when I spoke with her. It was not pleasant.

My sister, my family and I were reluctant to call them again. We were taking 3 hour shifts sitting with my mum through the night and at times her breathing was heavier – we were unsure what to do. 

I spoke with the District Nurses during the day about what had happened the night before and they informed me that they had explained the situation to the out of hours team. They said they would get in touch with them again and explain my mum’s normal presentation and her situation. We had to call the day team for the same situation as the night before and they came to our house as quickly as they could, and on assessing my mum’s condition they gave her a top up of medication to ease things for her. This happened each time we called.

Unfortunately, we needed to call the out of hours District Nurse team again. A District Nurse arrived and on entering my mum’s room she looked at my mum and said that this was just natural progression and she could not really do anything. I had to walk out the room (I was feeling really angry), my sister spoke to her.

The District Nurse said to my sister that my mum did not look uncomfortable. This surprised my sister given that my mum, in general, looked almost as if she was asleep whilst she was going through the process of dying. It was clear my mum looked as if she was struggling to breath, her cheeks were being sucked in her sides where pushing right out and her breathing was deep and quick.

My sister then said to the nurse it was important for er mum to be comfortable in which the nurse replied,  we have to make sure we are giving the medication based on the correct basis, or words to that effect. Yet, the night before they were happy for me to make that assessment if it saved them the journey to my house.

At the start of the District Nurse’s assessment of mum she was very cold with no empathy whatsoever. She made comments about the people awake in my house so late at night, she made comments about my mums’ pad being wet. She did offer my sister to help change my mum’s pad, but my sister got the sense she was assessing her care of my mum rather than being helpful. 

The following day, the District Nurses advised us  to call out of hours if needed. At this my sister burst out crying, and said she found this difficult because of the way they were.

The services between day and night were like ‘chalk’ and ‘cheese’. The service my mum received during the day was fantastic. In my opinion it shone a big massive light on how poor the out of hours service was.