In Part I, I responded to some of what Dr. G. had said about our role as caregivers. I reiterated that without legal documentation, you, as the spouse might have little input into the treatment plan for your partner. Whether by design or oversight, not being appointed the Health Proxy may totally cut you out of the care plan and even bar you from receiving treatment information. This week, I’d like to address what Dr. G. said about what being a caregiver requires of us.
Dr. G. writes, “If you are the caregiver or otherwise in charge, you must absolutely do your homework. True, not being a doctor you may have some difficulty knowing what is relevant and what weight to give to various points; but you must do your homework if you are a caregiver you absolutely must know what everything means, you are responsible. If you don’t know it for yourself (and if you are not a doctor or nurse you might not, and the Internet won’t do it), ask the doctor exactly what you should know, and what things mean. If you cannot or will not do the job, the patient should not be in your care. There is no room for a “good idea, but” approach: either you are able to do the job with all that it involves, and are willing to do it; or you should, for the sake of the patient, stand aside and let the job be done by someone who is both willing and able. And part of that is getting all the knowledge and skills you need.”
Is Dr. G. laying out an impossible task for a caregiver? If the caregiver is young, s/he may be working and raising children while caring for his or her partner. The situation is at best difficult and often depressing. If the caregiver is older, the ability to grasp the intricacies of the medical knowledge needed may be very difficult to comprehend. Perhaps Dr. G. is correct when he suggests, “for the sake of the patient, stand aside and let the job be done by someone who is both willing and able.” Most of us, as long-term caregivers, have taken care of our spouses alone for so long that we don’t see that there might be an alternative. We think we are only ones who can deal with our spouse’s medical needs. Perhaps asking someone we trust, someone who may have the time and caring to totally involve themselves in the treatment plan, someone who is willing and able to understand and research medical options and explain them to us and our partners, is an excellent alternative. It would establish a team comprising of you, your spouse and the trusted third party who could then, together, weigh the medical options and come to a consensus that would work in the best interest of the ill person, would be doable for the caregiver and be aligned with the practicalities of the medical system. It would make things so much easier for the caregiver and the physician. It would decrease the stress on everyone. And, decreasing the stress of care giving is as necessary as breathing in a caregiver’s life.
I must admit that when I first read Dr. G.’s comments on the role of the caregiver, it made me very angry. Knowing all too well how overburdened caregivers are, requiring them to be totally informed infuriated me. Where could we find the time to educate ourselves? How could we be expected to take on yet another job? How do we clear our heads from the panic that a medical crisis brings or the overwhelming pain of care giving in order to be lucid enough to learn even more about this (possibly new) illness and decide on the best treatment plan? And then I realized what a wonderful idea Dr. G. was presenting. Most caregivers are too devastated to be able to do “the job with all it involves” and perhaps would welcome the opportunity to, “stand aside and let the job be done by someone who is both willing and able” while keeping them very much in the decision making loop.
I want to once again thank Dr. G. for his letter. His comments gave me new insights and different perceptions into the reality of the caregiver’s role. I want to applaud his candor and the courage of his perspective. I believe the insights he has given us can help us be more efficient as we help our spouses and understand the perspective and boundaries from the other side of the stethoscope.
Some final comments next week.
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