This story began with a phone call from brother and sister “Lisa” and “Michael,” who are both in their mid-40s. Their call was like no other I have received in all my decades of law practice.
“Mr. Beaver,” Lisa began, “we have read your column for years and need your help. What can we do to prevent our mother from going forward with plans that will wind up killing our father?”
I, of course, asked them to please be specific. What plans? What’s going on?
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A matter of Mom’s self-image
“Dad has been a beloved pediatrician his entire career in our town,” Michael explained. “Mom’s self-image has always been as ‘Dr. Y’s wife,’ which, in her mind, gave her social status and made her feel important, a somebody. She always refers to herself as ‘Dr. Y’s wife.’ That is her identity. Recently, Dad was diagnosed with Alzheimer’s, and over her protests and denial (‘Those neurologists don’t know a thing! Dad is fine!’ she insists), he had to close his medical practice.
“It was as if someone turned off a switch for her. In her mind, Mom no longer has the celebrity status of being married to a physician beloved by his patients and their families. Instead, she told people that Dad had embarrassed her! It was so upsetting, Mr. Beaver!
“Mom told us, ‘I can’t face people. We have to leave town.’ She made a down payment on a house hundreds of miles away, where they do not know anyone, and she plans to move there with Dad. This will cut him off from all his friends, people who would want to help them in any way possible. He does not want to move but has always been passive in their marriage.”
Lisa added, “This move will isolate him and impair his mental and physical health at a time when he needs support from the many people in town who care. We need direct, actionable advice from someone who has experience with these issues, a road map to follow on things we could do that might alter her desire to move away.”
Listen before taking action and lead with empathy
Data on migration patterns shows that roughly 22% of people move to a different county following a dementia diagnosis — a rate significantly higher than for other major health events.
To get some advice to help Lisa and Michael, I spoke with Boca Raton, Florida-based Jill Poser, founder of Life Care Concierge of South Florida, a nurse-led care advocacy practice. Recognized as an expert in aging life care management, private duty home care and life care planning, she holds the Certified Dementia Care Partner (CDCP) designation provided through the Alzheimer’s Foundation of America.
Poser began our Zoom interview by pointing out, “A diagnosis of Alzheimer’s or another form of dementia severely impacts a couple’s relationship, often causing a deep loss of identity.”
She offered these four recommendations to consider, focusing on addressing Lisa and Michael’s mom’s grief and identity, continuing care for their father and legal issues.
1. Focus on Mom’s grief and her identity fears
Listen to Mom and ask her what she fears. What is the basis of those fears?
View her behavior as an expression of grief and belief that she is losing her identity as “Mrs. Dr. Y.”
Approach her from a position of empathy rather than accusation.
For example, don’t say, “You are so wrapped up in yourself! Moving away where he has no one will shorten his life.”
Instead, show compassion and avoid using “you must” statements: “We know how much you love Dad. How can we support you?”
2. Explore aspects of identity that will strengthen her public role as Dr. Y’s wife
Suggest she get involved in social activities, philanthropy, clubs or sports.
Say: “You both loved tennis, and Dad is an excellent pianist, so create sports and music scholarships in both your names for students at our local college. This way, both of you will be so appreciated for giving back to our town.”
3. Preserve routine and familiarity for Dad where possible
The siblings should stress the importance of stability and how a familiar environment is crucial for someone with cognitive decline. Routines, longtime friends and known surroundings reduce disorientation and the risk of behavioral decline or wandering.
Point out that in town Mom has a support system that is already in place, but moving away would be a major disruption and could accelerate Dad’s functional decline. The responsibility of caring for Dad would be entirely on her shoulders.
Be strategic about this. For example, try something like, “Mom, let’s assume that you decide to remain in town. Tell us about the support you would like and think about who you already lean on in times of stress. These are good reasons to remain here. We know the burden will be significant, and you can count on us to be here to help in any way we can.”
4. Discuss care management and seek professional support
“A dementia diagnosis is one of the heaviest, world-altering moments (for couples),” Poser says. “It often triggers a fight-or-flight response — the urge to run away, to leave town to escape the reality of the situation. That’s a common human reaction to fear and grief.”
She adds, “For that reason, among many others, these adult children should suggest hiring a care manager or appropriate professionals to evaluate their father’s home-care needs, provide ongoing counseling for their mother and help facilitate difficult family discussions. And be ready to act as a neutral mediator in family discussions.”
The key to preventing the move
My advice? Lisa and Michael need to immediately consult with an elder law attorney/conservator who, in most states, could try to obtain a court order that would prevent their mother from isolating their father.
At a hearing, a judge can consider why the move is proposed and whether it is in their father’s best interest. Dad’s opinion can also be considered, if he is able to express it.
Poser concluded our interview with this observation that should apply to all of us who were raised by loving parents: “Growing up, our parents protect us. Growing older, we protect them.”
Dennis Beaver practices law in Bakersfield, Calif., and welcomes comments and questions from readers, which may be faxed to (661) 323-7993, or e-mailed to [email protected]. And be sure to visit dennisbeaver.com.