My friend's Dad is super organized…with issues that he feels comfortable with. He's excellent at banking, manages the insurance for the house and cars, and pays the bills with Swiss watch precision. When Mom was diagnosed with terminal cancer, he assured the family that he had "everything under control." As it turns out, Dad's version of "everything" had some MAJOR gaps. In retrospect, they wish they had asked the question, "Dad, define everything."
The bank accounts, the will, the deed to the house; in truth, those are the easy things. The other part of "everything" is often unknown and unaddressed. Where does Mom want to be cared for? Is she OK with being in a facility, or absolutely not, under any circumstance? What if that is the only viable option? Who will advocate for her when she cannot?
Processing diagnostic and treatment information, there are many layers of decisions to be made in that acute moment. Choosing various courses of action consumes our energy and attention span. If you are fortunate and have not been through an end of life scenario and all it entails, you simply may not know what your options are…or what decisions need to be made.
His Dad operated in a vacuum. He did not ask and was not informed by his health care provider, of the issues that needed consideration. His situation is NOT atypical. Matters that are considered "private" are often kept in a vault and not discussed...At all. Hence, "everything is under control." As children, loving family members, or involved others, we want to believe that this is true.
Is there a long-term care policy that could offset the cost of in-home private care? Is the family in agreement about care options, continuing, stopping, or redefining the goals of care? Has there been any consideration of End of Life care; where, how, by whom? Is there a family cemetery plot, and if so, where is the deed?
These complex scenarios require multi-level decision making. What matters to you? What matters to Mom? You can take a trip to Aruba and stay in a spacious resort on the beach, OR in a one-room hostel downtown with a shared bathroom. They are both Aruba but will be vastly different experiences. You may be left with disappointing second or third options if you don't consider the whole picture early on.
When you reach crisis-mode, the difficulty increases exponentially. Imagine that there is not any available room in the cemetery that you always imagined your parents would want. In fact, there is nothing in the town they have lived in for all of their adult lives. You are stuck.
Ask questions. Talk to your friends who have been in this situation. Research "Five Wishes," which is a guide, a conversation starter, and a place to begin, to make sure that "everything" or as much as is possible, is, in fact, all set.
Joanne MacInnis, RN, is the founder and president of Aberdeen Home Care, Inc., of Danvers, a concierge private duty home care agency in business since 2001. With 35 years of nursing practice, management and administration experience focused on home care and hospice, Joanne and her team specialize in advising and supporting families addressing the elders in their lives retain dignity and quality of life.
