What's wrong with settting conditions for being primary caregiver?
I've cared for numerous family members, either as a primary caregiver or being heavily involved in caring for loved ones over the years. I've done everything from caring for a terminally ill parent, as well as my beloved grandmother who was disabled by a stroke. I've cared for my father-in-law, mother-in-law, and other in-laws who were elderly and living alone and/or living with me and my spouse for periods of time. I've planned funeral after funeral, planned and hosted family and friends at my home after saying goodbye to loved ones.
I do not regret helping loved ones, but I do think there's got to be a point where it all becomes too much. We learn of another loved one's illness and family members turn to you because you've done this so many times in the past, as though you're just expected to fulfill that role again.
Most recently, I was primary caregiver for my mom for 2 years and got quite ill. She had not been diagnosed with dementia, though I tried for years to snap my brother out of denial so he could help me get her to the doctor. When she was finally diagnosed with dementia, she was released to me since my home was organized, in a nearby state, and my family more or less felt my lifestyle was best suited for managing my mom's day to day care.
At the time of her diagnosis, I believe I should've had a discussion with my family about how we'd all play roles in caring for her, but this conversation never happened. And so, when my mother was in her worst mood-swing state, she came home with me and my husband. She was violent at times, threatened me with a knife, chased CNAs out of the house, would not bath unless I worked for hours to get her into the shower, and much, much more. With the help of a number of doctors, we finally got her stabilized.
That said, my body finally broke down and I developed symptoms my physician was so concerned about he demanded I make other arrangements for my mother's care. It took a very long time to recover physically from the medical diagnosis and it was during my recovery that I asked myself, "Could it be that I've done this [caregiving] too much throughout my life. If so, how do I draw a line, how do I pull back when illness in the family and end of life issues arise again and I'm called upon once again? Can I really ever say, 'No, I can't do this anymore."?
I think we have to create conditions before taking on the caregving role. We have to say what we are comfortable with, and not comfortable with; what we can and can not do; how long we can be caregivers without risking our own health and well being; we have to identify what we need to provide care; and let family members know that everyone has to find a way to contribute for care.
I finally did this. I finally set conditions and guess what? I've been cut off by my family for doing so.