Being diagnosed with mesothelioma is a difficult challenge. Not only is it a challenge for the patient it is also for their loved ones. Relationships change with a new unknown reality. Roles change as couple’s transition to patients and caregivers. Any cancer diagnosis forces people to look at the reality that most of us are uncomfortable with – we are all going to die. During this time it is important for the caregiver to realize and accept that the patient is the one in the driver’s seat- making the final decisions. If the patient is unable to make the decisions they have to act as their voice, making the hard choices that they might not agree with. When the disease progresses it can be overwhelming for both the patient and the caregiver. To watch your loved one suffer from shortness of breath or pain can be unbearable to the caregiver. Being unable to fix it for your loved one is devastating. It reminds you of how powerless we can be as humans. Intellectually we all know that we will all leave this world when the time comes despite all our medical treatments. The challenge of caring for a loved one during this time can be daunting, overwhelming and difficult to deal with. Most of us will fight to the end for our loved one. The person with the disease is the one who decides when the fight shifts. There is nothing wrong with doing everything for your sick loved one but you have to realize it is about them. The physical and emotional fatigue and pain they endure can be immense. It is up to them when they say enough is enough.
After visiting a patient with re-occurrence who was in a rehab center, her husband was reporting that she was doing better. He thought that her pain was under control, she was eating better and was starting to walk more. When talking with the patient it was clear that she had enough. She was not any better. She was ready to shift goals of care. She did not want to “disappoint” her husband but she was tired and at peace. She had done what some people who know that death is near do. She had done a life review and made peace with how she had lived her life. She relied on her faith and was ready to die. The couple had many conversations over the years about what they wanted at end of life. She was ready, he was not.
When this happens, there are things you can do as the partner/ caregiver. A change of strategy is in order. This is probably one of the most difficult things you have to do. Take a deep breath and listen to your loved one. If he or she is tired of appointments, medications, exercise, nutrition, it is ok to let them be. When this turning point comes, the focus changes. It really becomes about the patient and how they want to live out their lives. Attempting visits with people they have not seen or enjoying their home and surroundings can be options. It is okay just to be in the moment and enjoy each other’s company wherever the surroundings may be.
How do you get to the point that you are both ready to face dying together? How do you say good bye? The starting point is to listen and hear what your loved one is saying- not what you want to hear. Respect their wishes and follow their lead. Enjoy the moments, savor your time, and create memories that will sustain you through the difficult days ahead.
“Life is pleasant. Death is peaceful. It is the transition that’s troublesome.” Isaac Asminov