My mum has died. I am just so sad. She was diagnosed in 2021. Given ambulatory oxygen 2023/24 but didn’t have to use it until mid 24 really. She went into Type 2 Respiratory Failure 16th Oct last year. She had had a few hospital admissions but nothing major. I got a phone call telling me to go to her. It was terrifying and so unexpected. When I saw her she was so distressed. I was terrified. Palliative care were involed and it took her a month in HDU to recover. That anxious fear has lived in my chest since that day.
She was back in a month later and a nurse left her on 2 litres of oxygen and she was actively dying when i got the second “come now” phone call. No NIV physio was called and I begged them to try. It was reveresed again and she was diagnosed as a retainer. She was givin a domi NIV and she became terrified to sleep; terrified of oxygen and terrified to die. She was between hospital, home, my home and a hospice for 5 months. It was so stressful and worrying. I carried my phone with me everywhere… “Just in case”. She was put on long term steroids and she did so well!
She had a great summer with minimal steroid packs but about August time she started to feel tight al the time. Her BODE Index had recently said she could have 5 years left, so we started making longer term plans.
She started having morning desaturations to 72-79 about 3 weeks ago. She was good in the afternoons though so we were making plans to move in together so I could support her better. 29th Sept I get a 4am “help me” call. Terrifying resus admission , type 2 respiratory failue but fast and great treatment means it was fully reversed by the evening. 6 days in HDU. Due to come home but feeling rubbish Mon, then Tues and Wed I get a call from ward to say back into respiratory failure. I go to hospital and she is hysterical. I wm asking about paliative cate to review for alternative medications and no one listened.
She was in and out of consiousness and fear. Wild, desperate, hysterical fear. Even medazalam was not helping. My daughter is disabled so I had to leave but hospital said they would call me. 4am “your mum is aggitated. She might calm down if you come.” I could hear her screaming through her NIV as I entered the ward. How do I unhear that? !
I asked for palliative team “They are not in until morning.” [I will be reporting to PALs] Then time simultaneously stood still and fast forwarded.
9am blood gases still high. 10.30am “There is nothing more we can do. We are withdrawing treatment.” I am an only child.i call the family and friends. They come. A syringe driver is finally fitted around 12pm and mum finally settles. She was gone by 15.52pm.
Once the driver was fitted she seemed more relaxed. Watching her be weaned off NIV was hard. Watching and listening to her breathing was harder. I found it so hard to watch. But I put her favourite songs on and I held her and loved on her. I tok her pulse and sent for the nurse to confirm. There were small glimmers of “a good death” in those moments.
But i cant stop seeing her face before. I have never seen someone die before. The worst part is feeling in my bones that she suffered fro.m Wednesday until her death. I know in my heart I did the best I could. I am not a nurse and I did all I could to keep her safe and alibe this ladt year. But I keep feeling I failed her when she needed me most. The terror on her face. The screams, the flailing haunts me. I have barely slept. The fear is gripping. I am surrounded by support. I have spoken with palliative care consultant who said she deserved better. I will take this further… but my poor mum.
I just hope she knows I tried so hard to help her. When she had respiratory failure before, she didnt rember her experience when she got better… so I hold onto that.
It has been a hell of (almost) a year. I keep thinking I hear my phone ringing.
My grief counselling from is amazing and I so hope the images and the guilt I feel fades over time.