Yesterday the palliative team came to our home and held a meeting for Hajime to improve his QOL.
A doctor, nurse, social worker and chaplain attend this meeting. We were so thankful to them to have a lengthy meeting for Hajime and our family.
Our fear, Hajime’s condition, his mental situation, and prognosis that always afraid to ask have been discussed.
We also talked about how it is getting difficult to have communication with him. Hajime was crying because he want to make more communication but he just can’t,,, Eye gaze system is very difficult to adjust and every time we move out from his sight and move back-in, it’s needs to proceed the alignment. Although only solution to solve this communication issue seem to be practice. I need to encourage him to practice.
For simple communication, my husband hand made a device for Hajime. This is prototype for next upgrade. I’m looking forward to see a new version.
My husband also made the one he is currently using to call us. Tapping his foot and will call us. It is useful and helping us a lot.
I never had a chance to write at this blog so I’ll put here a photo.
Hajime’s tiny skin break has been found. It is still stage 1. Because of this, he may need to be turn and off pressure every 2 hours at daytime.
He used to able to turn by himself so it was not a big issue but at this point with his muscle weakness, we need to help turn him. The pressure ulcer is a big problem so we have to keep eye on it.
The idea having a dog was also very positive from all. We are more serious looking for a dog. We decide to have toy poodle so now we have to find a best match to us.
Thank you so much for the information.
It was very busy day but was very productive day.
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