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 suffer from Alzheimer’s or other dementia.
Despite your suspicions, when you hear the words "Your mother has Alzheimer’s", "Your grandfather has Alzheimer’s", "Your Aunt Ellie 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?” Families struggle with these and other critical questions.
It is not uncommon for every member of a family to answer these questions differently. When members disagree, tensions build, and family relationships suffer. Families often avoid these important and difficult conversations. By not discussing the situation, it often feels less real. In the meantime, the elder’s cognitive capacities continue to decline, and no decisions are 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, 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.
Consider Norm, recently diagnosed with Alzheimer’s. Norm’s three daughters cannot agree how to handle Norm’s care. Two out of town daughters maintain that Norm needs no intervention, while the local daughter, who sees Norm almost daily, is witness to his rapidly diminishing ability to manage his financial affairs, his increasingly unkempt appearance, and his inability to engage in ongoing conversations. The sisters argue vociferously about whether their father can continue to manage his finances independently and whether he needs assistance in the house.
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 is no longer be safe living independently. The enormity of these decisions, practically, emotionally, and financially, can create ruptures in the closest of families.
Consider Emma, who at ninety lives alone, with 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, recently sent her into cognitive free fall. Emma is now incontinent, can no longer dress herself, and independent meal preparation is out of the question. Emma’s ability to process and string thoughts together has also significantly diminished. Emma’s four children, live hundreds of miles apart and away from Emma. They are struggling to decide whether to bring in 24/7 home care or seek placement for Emma in an assisted living or memory care community. Fortunately, Emma has sufficient resources to afford the care she needs, but her children are divided on whether or not to remove her from her home of forty years. Emma’s two daughters insist that Emma remain at home since she can afford it. They believe she will not adjust to a move and would deteriorate quickly. Emma’s two sons, however, believe Emma needs the structure, socialization, and cognitive stimulation that assisted living or memory care can provide.
Unlike Norm’s family, Emma’s family participated in mediation. While 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 period 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, she did not require skilled medical intervention, 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.
Mediation can support families as they navigate the challenging issues and decisions associated with a diagnosis of Alzheimer’s. Through productive discussions led by an experienced neutral mediator, mediators help family members explore each topic, share perspectives, gather information, reach consensus, and find their way forward.
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