Life In The Passenger's Seat

For Caretakers and Friends - February 28, 2014

Being the caretaker of a family member who is coping with a major medical issue presents many challenges. One of the more difficult parts of this experience can be accepting that as the caretaker you are closely connected and deeply involved but because you are not the patient you are not the ultimate decision maker on the patient's treatment or care options. It is very common for a patient to be offered a choice in treatment options with each choice presenting different challenges and risks. It is up to the patient to decide which path feels best for them. Sometimes the patient may feel strongly about one particular option and the caretaker disagrees. Of course it is the patient's right to decide what happens to his or her body and life but whatever choice the patient makes it will impact the caregiver as well.

When my husband was sick there were many points in the process of his treatment where an important decision was made regarding the direction of his care. It was challenging because while he wanted my input and valued my opinions it was not my decision to make, it was his. Of course I understood and agreed it was his choice but it sometimes created an odd feeling of helplessness and frustration for me. As I was trying to explain the challenge of this situation to a friend I came up with an analogy. The journey of managing an illness is like driving a car, the patient is behind the wheel and the caretaker is in the passenger's seat. The patient is in charge of where the car goes and the passenger may have some suggestions for when and where the driver turns but is not behind the wheel. Whatever choice the driver makes will impact the passenger as well since they are going along for the ride

In my experience there is no simple solution to this conundrum. The patient must remain the ultimate decision maker in all choices surrounding his or her care. However as the caretaker it is vitally important that you learn to set boundaries and limitations on how much the patient's choices will impact your own mental and physical health. While you have to respect the patient's choices, this does not mean you have to blindly accept any and all demands those choices put on you as the caretaker. For example, the patient may choose a course of treatment that requires more support than the caretaker can provide on their own. While it is the patient's absolute right to choose whatever treatment they want, they cannot use the choice to make demands on the caretaker that are unreasonable. The caretaker can and should insist on limits of the amount of care they can provide and help the patient find others to fill in the gaps for the support they cannot provide.

If you find yourself at an impasse with the choices the patient in your life is making for his or her care, I strongly recommend you reach out to the medical professionals involved. Frankly, neither you nor the patient can be objective in this emotionally charged situation. The doctors and nurses have the technical knowledge and access to support services that can help you navigate a solution. My husband chose to aggressively treat his cancer right until the very end. There was one particular chemotherapy treatment that had side effects that were extremely difficult for us to manage. I felt the treatment was more difficult for both of us than any benefit he gained from it. However it was incredibly hard for either of us to discuss the topic of ending that treatment because he wanted to remain in control of the choice, even though that choice had a huge impact on me. Rather than try to convince him to stop the treatment I made an appointment for us to talk with his physician about it. During this appointment I asked the physician to review all other options for treatment. I asked him to explain in detail each possible alternative course and the benefits and drawbacks of each. Throughout the course of this meeting with the doctor it became clear to my husband that he could make a different choice that was better for both of us. He didn't resist the change because he was empowered to choose it. It may not always work out this well in every case but involving your clinician in the discussion can greatly help in neutralizing the impasse and finding a creative solution.

I also strongly recommend that you find a caregivers' support group to help you navigate these challenges. Other caregivers can be one of the greatest resources for suggesting creative solutions to resolving these complex issues. If you aren't a "support group kind of person" you may want to reconsider and at least try one. Setting aside time to connect with others who are dealing with the same issues is vitally important for your well-being as well as that of the patient in your life. Quite simply, taking time for yourself makes you a better caregiver. If you cannot find a support group through the hospital or clinic where your loved one is being treated you may be able to find someone online. Contact advocacy groups for the illness that your loved one has to find ways to connect with other caregivers. If you can't attend a meeting you may be able to chat with someone on the phone or connect online. I found emailing the spouses of other cancer patients to be incredibly helpful. It was a safe way to express my fears and frustrations with someone who truly understood. They also made some great suggestions for ways to deal with some of the challenges we faced.

There are so many complex emotional situations that can arise during the course of coping with a major illness. It changes the nature of your relationship. Each situation is unique and there are no simple answers. That is why I believe that reaching out to others is the best way to help you navigate solutions.