Hospice and EyeGaze

[Tess77]

My dad went on hospice a few days ago. He was just in the hospital for pneumonia and made the decision to go on Hospice after making a final decision to not do the trach. The doctor said he is very late stage.

On Saturday he had a very bad breathing/panic attack - he had been having them very often. At the hospital they kept saying he was getting enough oxygen - I hate when they say that to ALS patients btw.i think the panic is caused by the air hunger but it could also be general fear of dying. But he could also just be upset that he can’t communicate. His favorite nurse said at one point during a breathing attack he turned blue. He was having a really hard time with his Tobii that day too and I also think he was upset about that. They gave him more anti anxiety meds and morphine. It’s just now I’m very worried because he can’t communicate with his Tobii
His favorite nurse thinks it’s because he can’t open one eye well and he nods off. Have others seen this when in hospice? They have someone with him 24/7 now. Was there something you did to help with communication?

 

[lgelb]

I'm very sorry. PM me if you need help on BiPAP settings that generally need adjustment if someone is experiencing cyanosis.

One answer to the communication issue is a printed mounted word/phrase board to use via yes (1)/no (2)/start over (3) blinks where you start by pointing your best guess and keep going till you hit on it. This is more than you need but you can cut some out:

https://downloads.tobiidynavox.com/Conditions/ALS/Communication_Board/TD_CommunicationBoard_ALS_en-US.pdf

Or you can use a whiteboard where you write the most frequent needs, and point to that in sequence as the blinks dictate.