When Lesa Abajian-Sullivan’s mother, Marianna (not pictured), was diagnosed with mild cognitive impairment in 2008, the Seattle chef understood it to be “an ultimately deleterious condition.” Initially, Marianna seemed relatively well: able to tell time, aware of current events, capable of carrying on a lucid conversation.
“But in time, Dad and I noticed Mom was becoming incontinent, that she was developing hoarding behaviors, that she was cooking but not putting food away, leaving it out to go bad,” Abajian-Sullivan recalls. “In the car, she’d left notes for herself describing how to turn the engine on.”
When Abajian-Sullivan’s father died suddenly in 2014 and responsibility for her mother’s care fell to her, “…that’s when I really understood how bad it was.” Combing through her mother’s multiple versions of wills, trusts, and powers of attorney, Abajian-Sullivan “…found the most legally binding documents and took them to our family law attorney to be declared her legal guardian. And once her physician legally declared her incapacitated, the attorney filed that. That’s when I became her decision maker.”
Complex decision making
While Abajian-Sullivan was able to make her way toward a straightforward legal ruling, a loved one’s diagnosis of dementia brings in its wake a complex decision-making process. Few individuals make decisions entirely on their own, and the interests of caregivers—typically a spouse or adult child—are at stake, too.
While some practitioners believe that people with cognitive impairment cannot make informed decisions and lack the ability to validly state their wishes, values, and preferences, research shows that a person with mild to moderate dementia can express life-long values and wishes for care now and in the future. Most can participate in care decisions, can state preferences consistently, and explicitly delegate responsibility for making everyday decisions. They can identify who they want to make decisions for them about health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home.
A cognitively impaired individual may have “task-specific competence,” the ability to make some decisions but not others. Also, their ability to express decisions may be better at one time of day than another or vary from day to day.
What to ask now
Questions that may help caregivers and care receivers talk about preferences and values include:
- How much is the family willing/able to spend for paid care?
- Who in the family will take charge of caregiving and/or make the arrangements for care?
- What sacrifice of money or time is too much?
- Can you get used to having a stranger in the house to help you? Can you adjust to someone who speaks a different language?
- What kind of help do you need right now? What do you think you might want in the future?
- Do you want some care to be provided outside of the home? What kind? How often? How long?
Abajian-Sullivan says in terms of making decisions for her mother, she places her well-being above all other criteria. “She’d be happiest eating chocolate all day,” she explains, “but Mom has diabetes and doesn’t remember she has diabetes, so I coordinate with her nurses to limit her consumption of sugar and alcohol. We go to the gym, she has a regular art date and massage therapy… keeping her mind and body engaged are what we’re focused on, and I do all I can to make her happy without allowing anything detrimental.”
She also factors her mother’s abject fear of doctors and hospitals into her care: “She has regular physicals, for instance, but I’m not going to subject her to, say, more intrusive brain scans or testing, because I want her to be as stress-free as possible. We’re focused on quality of life now.”
Effective advance planning can lessen emotional and financial strain over time, and relies on communication and understanding of the cognitively impaired person’s values and preferences for care. The Alzheimer’s Association offers an extensive list of financial and legal recommendations to aid dementia patients and caregivers. Meanwhile, an attorney who specializes in elder law can be an invaluable resource in this process.“
One of the most important medical orders our attorney filed was the POLST, and I strongly urge anyone with a terminally ill family member to file one,” says Abajian-Sullivan. “It’s the Physician Order for Life-Sustaining Treatment, and it outlines literally everything that will or won’t be done in a worst-case scenario, per my mother’s wishes.”
“Just knowing you have things like that in place legally gives you tremendous peace of mind, in a situation where peace of mind is often hard to find.”