The hardest part of being a caregiver is not really knowing what our loved one is experiencing. We depend on them to tell us what they are going through and how they need our help. We learn what they need without them asking, but we can not really know what is going on in their bodies.
Being a caregiver takes a willingness to give up a part of your life, sometimes a large part, to care for your loved one. In my case, caring for my child, I feel I have no choice. But to have a spouse or parent who needs your help, you do have the option to "opt out", but you don't because of your love for them.There are also stages of emotional acceptance we go through. Whether taking care of a spouse, sibling or child, we need to come to terms with the "death of our loved one's healthy life" and the plans for our future together. We have to learn to accept these changes as their illness takes control of both of our lives and not harbor any resentment to the patient. I know as much as I sometimes regret that I can not have a career or even a job because of her need to always be supervised...this is where I need to be and I can't blame her for that. A caregiver's schedule revolves first around the patient's schedule and needs. There are times when you can have your needs override, but the majority of our planning is centered around their needs. As a caregiver, you become the patient's adovocate. This is true whether the patient wants you to or not. I have no problem with her accepting me in this role, but as other caregivers take care of siblings, spouses or parents who don't believe they need someone to fight their battles, it is a tougher job.