Our view of dementia is changing, but it needs to change more.

How we treat others, particularly vulnerable others, is part of what defines us as a society. When we hide demented elders because they look or act strange, when we fail to provide caring ways and places to live with dementia, we fail in important responsibilities. And yet people struggle with how to meet their obligations and find little guidance available. Should I lie to my father to get him to take medication? To get him to move out of the house where he has lived for decades but is no longer safe? Can we prevent those with cognitive impairment from driving, and if we do, how will we improve public transportation to better accommodate elders?

At one point in my life, I thought I knew something about dementia because I could recognize its symptoms and identify a hippocampus. But even as a doctor, I was not prepared when my mother developed the disease. I did not understand the options. I had to learn along with my siblings what sort of care she might need at any given stage and try to get that for her. I don’t think we made terrible mistakes, but we made some. Our choices were difficult and the consequences were impossible to know in advance.

Dementia experts note a number of factors that make dementia care, especially at the end of life, both poor in quality and costly with- out benefit. When I think back over my mother’s treatment, I see markers of less than ideal care: barriers to pain control, unhelpful transitions from hospital to nursing home to emergency room. Her journey through dementia was typical in many ways. It illustrates just how far we are from a system that respects those with dementia and their families. All across the country, families are facing similar choices, and they are struggling to find the right thing to do.

My mother was lucky in many ways. She grew up in a big Irish Catholic family in the suburbs of Washington, DC. She was bookish and shy. She always excelled in school, skipping a grade and finishing college first in her class. She married a good man who had gone to the same parochial school. (A 1935 issue of the church bulletin celebrated the children with highest marks in each grade, listing my father in eighth grade and my mother in fourth.) She had six healthy babies, now six healthy adults. She possessed a mysterious, renewable personal energy source. She marshaled her troops through homework, dog walking, piano lessons, sports practices, and rehearsals for school plays, and then she painted the furniture and fixed the toilets.

Not everything was easy. The late sixties were hard for a good Catholic woman, a time when teenage boys had long hair like Neanderthals and teenage girls went without bras like you-know-whats. They used bad language and questioned authority. My mother was bewildered. She embarked on a graduate degree in women’s studies to see if she could figure out what was happening. She read, among others, Shulamith Firestone, who advocated the abolition of pregnancy and the nuclear family. My mother was appalled. But gradually things calmed down. Her children grew up and made better choices in hair- styles and lingerie. They got jobs, they married; chaos no longer reigned.

Decades rolled by. My mother’s dementia came on gradually and late in life. By her mid-seventies, she had noticeable lapses in memory.

My father was still alive, and together they made a reasonably functional team, living most of the year in Florida. My father had cancer, and he remained mentally sharp though increasingly weak. In contrast, as my mother’s cognitive skills steadily declined, a lifetime of physical activity kept her spry. She could ride her bike in their gated retirement community, since the circular trails always led back to her own apartment. When they set out for the grocery store, my mother would drive. My father would tell her where to turn, where to park. He would lean on the grocery cart and she would bird-dog items as he directed. Sometimes he had to stay anxiously with the cart while she brought the car around, but generally they got through their daily life without major mishaps.

But then their system began to fail. As my father became weaker, he couldn’t always accompany my mother. Her cognitive deficits pro- gressed. She got lost on her way to a doctor’s appointment; she arrived very late and beside herself with anxiety. She was badly shaken for days after. Things were falling apart. It was time to change, but my parents were angry with us for suggesting as much. We were frightened. We couldn’t keep them safe more than a thousand miles away from their closest child. All six of us lobbied hard, in unison, for a parental return to Maryland, where they had raised us; still had an apartment, doc- tors, and friends; and where two of my siblings still lived.

With some resistance and much assistance, my parents moved back. My father got sicker. He enrolled in home hospice, and after a time, he succumbed to cancer. A home health aide had moved in dur- ing my father’s final illness, and she stayed on after his death to care for my mother. Things did not go well. My mother was grieving and her symptoms got worse. Once she ended up around the corner from my sister’s house in downtown DC and asked a stranger planting tulips if my sister lived near there. My mother couldn’t remember her daughter’s married name, but the neighbor figured it out and pointed her in the right direction. The neighbor also ratted her out to my sis- ter. We started to worry about her driving and finally got her to stop. She was extremely angry about giving up the keys. Hostile negotiations earned her a new nickname: the THWP, or Tiny Hibernian Warrior Princess.

My mother became paranoid. She lost small objects and blamed the aide. She began to stockpile pencils, since she believed the aide was hiding them to prevent her working on the crossword puzzle. Pencils were under the mattress, in the drawers, in the bathroom. In her prime, my mother cooked Thanksgiving dinner for twenty-five people with the tactical skill of a general going into battle. Now she was a risk in the kitchen, forgetting a pot on the stove or saving leftovers until they were blue and furry. Medication management became a problem. Knowing her memory was faulty, my rule-loving mother made an index card and taped it to her bathroom mirror. It said, “Take your medicines.” And she did, over and over, until she became delirious from overdosing. Under protest, the index card was removed.

She had very little to do all day. Hours crawled by. My always active mother had no chores, no tasks to structure her lifelong productivity. The aide wanted to watch television; my mother didn’t. They were not happy together. My sister found activity groups that helped a bit but didn’t solve the problem. In one moment of comic relief, my Catholic mother went with my sister to the basement of a local synagogue that sponsored activities for those with dementia. My mother looked around at the nice ladies with Jewish names. She smiled tentatively. She spoke slowly, confiding to the ladies, “Some of my best friends . . . are synagogues.” Laugh out loud or crawl out of the room? My sister was torn. But they took her revelation in stride and went on with bingo. Over time, my mother’s theories about the pencils grew more elaborate, and the atmosphere at home grew more strained. Something had to give.

It came as a surprise to me that staying in one’s home is not always the best option. For my mother, home had become a prison. My sister took her to visit an assisted living facility connected with a parish church and parochial school. My mother loved seeing the school kids trooping by. She would have more to do, people to talk to. She could dine with a group of silver-haired ladies each night, at a sweet round table with a tablecloth and a flower in the middle. She could bring some of her furniture, enough to fill her single room. She had few regrets leaving behind her apartment, her last independent dwelling. She was a great walker, even then, and could easily walk more than a mile. She enjoyed strolling around her new neighborhood, al- ways accompanied, looking at the school, the old trees, the vegetable gardens.

Assisted living had its ups and downs. My mother flunked having dinner with the first group she was assigned to, since she introduced herself to everyone at every meal. They complained and she went to a different group, more obviously impaired. The staff was not unkind, but they were busy. My mother always preferred baths to showers— she loved nothing better than a relaxing “soaky bath.” Although there was a bathtub available, it meant a worker standing by to make sure she was okay. It was easier for the staff if my mother showered in her own bathroom. Baths became a pleasure she would have to do with- out. This is what you can lose in moving to an institution, even one that tries to be friendly: They evolve to match the needs of those who run the place. What is fun or pleasing for residents may not make the top of anyone else’s list.

Excerpted from “Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End” by Tia Powell