Hypersensitivity Pneumonitis, probable ARDS and SEVERE anxiety

[Fi1986nn]

My Mum has been on ITU for 2 weeks now, after a severe reaction to a supposedly mild chemotherapy drug. While her other organs are fine, her lungs are in a bad way. Because it's such a rare reaction (supposedly!!), doctors aren't sure what will happen and how well she will recover. Apparently it's just a matter of waiting. Easier said than done!!! She's only 61 :(.

For the first week she managed to breathe by herself in a CPAP hood. She has claustrophobia and this was so isolating from her. Mum has control issues and ahe was extremely demanding towards staff. I am an ITU nurse myself, and levels of anxiety that my Mum displayed in this first week were beyond anything I have ever seen myself. She performed a variety of rituals in order to calm herself, particularly when she anticipated any exertion or something that might cause coughing. She sometimes coughed spontaneously, which made it hard to breathe and caused panic attacks, and sometimes not following a ritual properly caused a panic attack which caused her to cough which made her panic more.... If she didn't trust a nurse or doctor she would have a panic attack, and this happened often. She refused plenty of treatment and plenty of monitoring interventions. In short, she could easily have killed heraelf through her behaviour, but eventually, and just in time, she asked to be intubated. She was so weak at this stage that they were very doubtful whether she would make it through the first 48 hours. She's still going.

We are over a week on. Her vital signs and ventilator settings are far better than when she was awake, although she does need a lot of support and 50% FiO2. They are talking about putting a trachy in and waking her this week (because the last thing she needs is an infection from the ETT)... But we are all absolutely TERRIFIED about her waking up and carrying on where she left off.

Can anyone relate to this extreme life-threatening anxiety, either in themselves or family members? Any advice would be so welcome.