The role of caregiver is under appreciated by most people until they either become a caregiver or are the recipient of long term care giving. Being a caregiver can be as difficult as being an EC-patient although in a much different way. Worse yet, a caregiver may find themselves at odds with the EC-patient over life and death decisions, course of treatments, expectations, and the like. The caregiver and the EC-patient may or may not be on the "same wavelength" when it comes to issues like denial, desire for knowledge or desire to leave the decisions to others such as doctors, and entering hospice care or continuing a forlorn struggle.

Room must be carved to allow the caregiver a life of her (or his) own.

Special considerations apply when the caregiver is also the competent decision maker. An EC-patient who is mentally incompetent (either from mental problems, alcohol, drugs, "chemo-brain" etc.) may be forced to rely on a caregiver for decisions. This can cause all sorts of stress.

One role of a caregiver that is often overlooked is that of a second "pair of ears" and a second viewpoint taker with the doctors. It is often wise for the caregiver to attend all or at least all important doctor patient meetings. Comparing notes afterwards often reveals misunderstandings or oversights that are critical.

1. Have I really had a series of heart to heart discussions with my EC-patient or do I just assume that we are on the same wavelength in all important matters?
2. Can I really act as my EC-patient's advocate when his or her ideas conflict with mine? This can be especially painful when the patient elects to continue or leave a course of therapy while the caregiver feels the exact opposite should be done.
3. Am I the source of my patient's information? Do I do the resource hunting? Am I the type who wants to know all (know nothing) while the patient wants to know nothing (know all)? Can I tolerate this dichotomy?
4. Can I spend the time necessary to attend all or most doctor visits or do I have work or family considerations that would prevent this? Often families with minor children where one spouse is the patient and the other is the caregiver need to get an auxiliary caregiver to help when the children must be looked after.
5. If my patient won't eat, take medicine, sleep properly? Will I chose to ignore this or will I prod (a.k.a. nag) the patient? How will this affect our relationship with each other?

Editors note: Until July 2005, the "Questions" page was a simple attempt to provide the newly diagnosed with a list of things they should discover about their situation. It was helpful, but as time went on, became dated. We owe Christine Early our continued thanks for the original content she provided. If you have any comments on the new series by Les Coleman, please contact Tammy or me via the "send a message" links below. -- Marc