Providing support – Marc


Marc’s friend is only able to speak with his eyes. Marc describes how this made his hospital stay more complicated.


A few months ago there was a difficult 2-month period during which he had to make a decision. But to make that decision, we had to consult with three plastic surgeons and radiotherapy surgeons. He had to have a scan, x-rays and an MRI and then, after the three specialists had a teleconference, he had to return to each of them, with the insecurity and a… how should I say? And a build up to the point “I made my decision”, it comes a time where I have to make my decision. Now this is a period, the most difficult period is not knowing where we are going. What will it imply for the sickness? Also, how am I going to manage this? Will I still be able to eat by the mouth? Will I have to be intubated and eat through a PEG? For me, it is the energy level involved in a healthcare system where the staff changes every eight hours, where the staff changes during the week-end. All the efforts I put in communicating on behalf of my friend, to be understood. The tricks for… just a sheet of paper to put besides his bed. Yes is when he looks down, no is when he looks up. Even if you write when he looks there or when… No, they do not have time for this. Even if you think, “Now you need a different call bell to call the reception.” Because he cannot use his fingers, thus we must find, take steps with the occupational therapist to find a different call bell. Then you have to alert the receptionist and tell her, “Well, he doesn’t talk. If you hear his bell, do not ask him what he wants. He will not answer back.” So it is many small details like these that cause… Well, you go through the network. Well this is it, when you don’t know in which hospital, and then in the other hospital, and again in the other hospital, you end up in ethics also, at the CLSC, are we going?

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