Weltschmerz
Active member
- Joined
- Apr 14, 2019
- Messages
- 57
- Reason
- CALS
- Diagnosis
- 01/2019
- Country
- UK
- State
- SC
- City
- Edinburgh
Hi everyone,
After an absence for an air ambulance and a return to our home country, my wife/PALS has had another few months firstly in hospital and now in a care home. Medically speaking, all is stable with the trach in situ and experienced care staff in the home. Despite this, my PALS greatest wish (since being hospitalised suddenly in January this year) has been to return home. We are working on that together with home aides and medical staff. In the meantime, I have started to notice a real change in mental health. I can’t work out whether this might be social isolation - after 8 months of being allowed no visitors except me (covid...) - we had our first time apart when I had to quarantine and wasn’t allowed into the home. On the other hand, it could be medication and/or sleepiness. To me there’s an element of sensory deprivation along with social isolation: curtains usually drawn to enable eye gaze to work (which it barely does); and light fairly constant except for sleeping. My fear, though, is that this is yet another element of the disease. I’m not sure there are many invasively ventilated patients in general, and so the pool of expertise might be limited for this type of musing. But any hints as to what I should look out for; what I might best report to doctors etc, would be very helpful indeed.
After an absence for an air ambulance and a return to our home country, my wife/PALS has had another few months firstly in hospital and now in a care home. Medically speaking, all is stable with the trach in situ and experienced care staff in the home. Despite this, my PALS greatest wish (since being hospitalised suddenly in January this year) has been to return home. We are working on that together with home aides and medical staff. In the meantime, I have started to notice a real change in mental health. I can’t work out whether this might be social isolation - after 8 months of being allowed no visitors except me (covid...) - we had our first time apart when I had to quarantine and wasn’t allowed into the home. On the other hand, it could be medication and/or sleepiness. To me there’s an element of sensory deprivation along with social isolation: curtains usually drawn to enable eye gaze to work (which it barely does); and light fairly constant except for sleeping. My fear, though, is that this is yet another element of the disease. I’m not sure there are many invasively ventilated patients in general, and so the pool of expertise might be limited for this type of musing. But any hints as to what I should look out for; what I might best report to doctors etc, would be very helpful indeed.