Last week the mesothelioma patient we have been following for several weeks was still very sick with infections, air leaks, and respiratory failure she developed after her surgery. She was very depressed, as was her family, as they were not expecting such a rough recovery. The family has been very frustrated, and they started second-guessing their decisions and began to wonder what their loved one really wants for her care. They held a family meeting where they decided to re-assess in one more week. Fortunately, there have been small but steady gains during the last week – the woman’s infections have subsided, she is gaining strength and her attitude has become more positive.
In talking with her husband and daughters, who are in their early twenties, I got to know what kind of person the woman is as well as how much this sickness is affecting them too. Finding themselves in the role of caregivers is foreign territory. When asked to describe what their day looks like, they explained that it starts early with a call to the ICU to see what kind of a night their loved one had. Then it is on to the hospital where they spend as much time as possible with their wife and mother. It includes time spent in the waiting room with family members of other patients, some much older patients with mesothelioma who are doing better than their loved one. Then they meet with the doctors for their daily update.
Thankfully, their loved one has a team of primary nurses who know her well and feel like part of the family at this point. Today, one of their favorite nurses is on duty. She is upbeat and personable – does she have any idea what that means to them? They say they do not have to worry about the “numbers” or their mother being too sick to ambulate – when they know this is vital to any chance at recovery. The hours go by slowly. They talk about how they try to deal with so much uncertainty – their wife/mother is the ‘director’ of the family and she guides them all through life. She would be the one who could tell them if they should go back to work or school, or if they should spend so much time with her. They want her to help direct them as to what to do now.
There have been guidelines all along for patients without complications; but their case is unique. Uncertainty clouds every decision. What if one goes back to school and their mother takes a turn for the worse and dies? Should they be thinking like that- it is reality- that it is a possibility. They describe being paralyzed with indecision as they wait for their “director” to tell them what to do. Mostly, they describe a situation so foreign to anything they have gone through as individuals or a family.
Emotional exhaustion has turned to physical exhaustion for all of them. They play the ‘what if’ game. What if she recovers, but she is in pain? What if her infections get worse, should they continue the same treatment? All those conversations about what she would and would not want are echoing in their heads. Luckily, their loved one’s health is improving.
Mesothelioma has been held at bay for another day.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.