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?
More from: Marc
- Travelling, holidays and respite – MarcMarc and the friend he cares for love to travel. Travelling helps them get through more difficult moments.
- Navigating the system – MarcIt can be “hit or miss”; sometimes Marc knocks on the right door, and other times the wrong door.
- Resources – MarcYou don’t always know where to ask for help. It would be easier if there were one single place to turn for good information, says Marc.
- Effects of care recipients’ behaviour – MarcMarc is very touched and inspired by the friend for whom he is caring.
- Trying to find the right balance – MarcMarc gives a lot of time to care for his friend, but also needs time for himself. He has learned to reconnect with himself during his free moments.
- Caring for yourself – MarcIn his experience, Marc was confronted with an existential dimension to caregiving: “Caring for someone is also suffering; it is suffering through love.”
- Financial impact – MarcMarc makes little money as a caregiver, but he is not worried. This is a choice he has made.
- Impact on health – MarcMarc lived through two periods of depression, but feels that now he has found a better equilibrium.
- The future and caregiving – MarcMarc doesn’t know what the future will bring but believes "where there is a will, there is a way."
- Providing support – MarcMarc’s friend is only able to speak with his eyes. Marc describes how this made his hospital stay more complicated.