June 1, 2013
Written by Halee D. Berg, Esq.
Alzheimer’s. Feared and dreaded. The word no one wants to hear. One out of every eight Americans is over the age of 65, and a third over age 85 have Alzheimer’s. Despite your suspicions, when you hear the words “Your mother has Alzheimer’s”, “Your grandfather has Alzheimer’s”, “Your Aunt Elly has Alzheimer’s”, your world stops. Your mind suddenly races, asking yourself questions like “How will we cope?,” Who will care for Mom?,” or “Will we have to put Dad in a nursing home?” At the Centre for Mediation & Dispute Resolution, (CMDR), we work with families just like yours, struggling with these critical questions.
People seek mediation because every member of the family answers these questions differently. Reasonably, they disagree, tensions build, and family relationships suffer. Other families simply avoid important and difficult conversations. By not discussing the situation, it becomes less real. In the meantime, the elder’s cognitive capacities continue to decline, and no decisions have been made. The elder may soon lack, or in some cases, already lacks, the capacity to participate in decision-making about his or her own care. In each of these situations, mediation can be enormously beneficial.
With the help of a neutral and experienced mediator familiar with Alzheimer’s, families come together in a confidential setting to discuss the many issues that need to be addressed regarding their relative’s future care. Specific discussion topics are identified and each participant voices his/her goals, concerns, and priorities. Options are generated, explored, and thoroughly vetted. Additional information may be gathered, resources identified, and collaborative family decisions are made.
Let’s consider the Simon* family. Concerned that she and her sisters could not agree how to handle the care of their widowed father, Norm, who had recently been diagnosed with Alzheimer’s, Joanna contacted CMDR. Joanna’s out-of-town sisters denied that Dad required any intervention, while Joanna, who saw Norm almost daily, witnessed his rapidly diminishing ability to manage his financial affairs, his increasingly unkempt appearance, and his inability to engage in ongoing conversations. Joanna and her sisters argued vociferously about whether Dad could continue to manage his finances independently and whether he needed assistance in the house.
Mediation provided the neutral and safe setting Joanna and her sisters needed to discuss their father’s situation. As Joanna’s sisters learned more from Joanna about what she was observing at Dad’s house and in his behaviors, they became increasingly open to considering the kinds of support he might need. Although Norm did not attend the mediation, the mediator met with Norm in advance and learned more about Norm’s interests. During their half-day mediation, the sisters reached the following agreements:
Other families are able to successfully absorb and manage the early stages of their elder’s dementia, but find themselves unable to agree on appropriate care as cognitive abilities begin to slip away, sometimes suddenly, and the individual can no longer be safe living independently. The enormity of these decisions, practically, emotionally and financially, can create ruptures in the closest of families.
Take this next case: At 90, Emma Porter lived alone, with some limited household help each week. Emma lived with Alzheimer’s for three years before a UTI, a common yet potentially devastating infection in the elderly, sent her into cognitive free fall. Emma was suddenly incontinent, could no longer dress herself, and independent meal preparation was out of the question. Emma’s ability to process and string thoughts together significantly diminished as well. Emma’s four children, living hundreds of miles apart and away from Emma, struggled to decide whether to bring in 24/7 home care or seek placement for Emma in an assisted living or memory care facility. Fortunately, Emma had sufficient resources that would enable her to afford the care she needed, but her children were divided on whether or not to remove her from her home of forty years
In the first mediation session, each adult sibling discussed his/her perspective regarding bringing care in or moving Emma out. Emma’s two daughters insisted that Emma remain at home since she could afford it. They believed she would not adjust to a move and would deteriorate more quickly. Emma’s two sons, however, believed Emma needed the structure, socialization, and cognitive stimulation that only assisted living or memory care facility would provide.
Emotions ran high and opinions diverged. After exploring each sibling’s interests and brainstorming options, the siblings agreed to engage a financial planner to analyze the costs of in-home versus facility care, for time periods from one year to eight years (beyond which Emma was unlikely to survive the end stages of Alzheimer’s). Each sibling assumed a specific task – exploring and touring facilities, speaking with and interviewing home health care providers, meeting with the financial planner, and exploring adult day care programs. Two weeks later, they met again, this time with two participating in person, one by Skype, and one by audio conference. After discussing what each had learned during the last two weeks, Emma’s children agreed to a six-month trial during which Emma would participate in a local adult day Alzheimer’s program two or three days a week, transportation included, and have round the clock at home care at all other times. They agreed to keep Emma at home as long as she seemed happy, her care was manageable, and she was receiving cognitive stimulation. Recognizing there might come a time when home care could no longer meet those criteria, they agreed upon a facility where they would send Emma when it was no longer in her best interest to remain at home. Also, they agreed to accept the recommendation of a geriatric care manager concerning when to move Emma.
At CMDR, we work with your family as you navigate the challenging issues and decisions associated with a diagnosis of Alzheimer’s. Through productive discussions led by one of our trained and experienced neutral mediators, we will support you as you explore each topic, share perspectives, gather information, reach consensus and find your way forward.
*Ficticious name
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