The Heartbreak of Guardianship of an Aging Parent

The subjects' guardianship, power of attorney, healthcare proxy, living will and advanced directive create more drama and more trauma than any debates on the touchy subjects of religion and politics. Throw the words "do not resuscitate" (DNR) into the mix and some family relationships never recover from the resulting conflicts. While the diagnosis of dementia, including Alzheimer disease brings with it overwhelming sorrow and grief, the decisions that follow the diagnosis can bring about even more anguish for a family.

The often unanticipated problems such as paying household bills, authorizing medical procedures or referrals, and agreeing on long term care needs etc., become exponentially difficult with the number of people who have some stake in the outcome. There are a whole host of potential outcomes that family members suddenly have to weigh in on. Without any advance directives, healthcare workers turn to the family to make these difficult decisions. These are decisions about life and death, home or nursing home, visiting schedules, which family members becomes the point of contact and the process for reaching consensus. Without a predetermined plan and without a designated responsible person to carry out the individuals wishes, chaos can ensue. While it's difficult in small families, for larger families, it's akin to having a football team without a quarterback. While there may be a lot of people running around, nobody on the team feels like a winner. Emotional family baggage and sibling rivalries rear their ugly heads and at times, the relationships between siblings become the primary focus, rather than the parent who is struggling to understand the diagnosis.

In an ideal situation, power of attorney, advance directive and guardianship provisions are completed while the individual is competent to make their own decisions and sign their own documents. In these cases, the process can be done easily and often free or inexpensively depending on the complexity of the situation. Once the illness has progressed, or during an acute episode of coexisting medical issues, when the person is not competent to make decisions the process becomes messy and expensive. Obtaining guardianship is a legal process involving medical proof that the individual is not competent. The total cost of the guardianship process can range from $3,000 to $10,000. The cost variation depends on the complexity of the case. If the guardianship is contested, the price increases as legal time increases . The Hastings Center estimates that less than one-third of us have a living will completed, leaving many families to grapple with very difficult decisions at what may be the worst time in their life.

Beyond the financial cost, the emotional cost to families can be enormous. Disagreements can be impossible to mediate when there are deeper issues around unresolved family conflicts, religion and differing opinions about quality of life. The negative impact on sibling relationships impacts the larger extended family such as, grandchildren, aunts, uncles, cousins as well as friends. Often the only thing people can agree on in these situations is that the breakdown and friction in the family is not what the ill family member would want under any circumstance.

For family members involved with such situations as well those working with families, the focus must continue to be drawn back to the ill family member. For a person diagnosed with dementia of any sort, including Alzheimer's, the fear and uncertainty during periods of clarity can be overwhelming. Bringing additional stress of family dissention can add the additional feelings of guilt and sorrow.