19 April 2025
Washington Post guest column by Sue Dickman
In summer 2019, I sat in the memory disorders clinic at the hospital watching my partner, Alex, fail to draw a clock. The circle was there, but the numbers spilled out into the surrounding space, and there were no hands, certainly none that indicated that it was 11:20.
The nurse moved on to the next task. “Here are three words,” she told him. “Apple, house, mother. I will ask you again in a few minutes to repeat them to me.”
When she asked again, he looked at her blankly. Words? What words?
Then she asked me to leave the room. When I returned, I learned that Alex had scored 10 out of 30 on the final test, a score so low that the clinic team was certain about his diagnosis: not just mild cognitive decline, but dementia. He was 75 at the time. I was 52.
As we got up to leave, the nurse held up a hand for us to wait. She looked at Alex. “I would advise that you go home and put your financial affairs in order,” she told him.
Then she looked at me and uttered a sentence I may never forget: “And you, my dear, are simply going to have to do more.”
When someone you love has dementia, people tell you things. Many are true, but only a few are helpful.
Of course, she was right. I would have to do more, including putting his financial affairs in order. What she said was not helpful, however. It did not give me a sense of support or care. It did not change the way I looked at the situation. I already knew I would have to do more, because I already was doing more. At the time, I would have argued that I was already doing everything. Only later did I learn that the definition of “everything” changes when caring for a person with dementia. It meant zipping his jacket, helping him in the shower and making every decision, small and large, for him. He was a therapist with two MA degrees who sometimes could not remember my name.
It took two years and one pandemic before I finally heard the advice I needed all along. I knew I would not be able to care for Alex by myself much longer, and, in my search for help, I hit one stumbling block after another. I spent months trying to get him into a Medicaid program that supported keeping people in their homes. After starting the application process, I learned that one program offered only one day of assistance per week. The other, which offered three days of help, insisted that Alex could never be outside alone, even in the backyard, a condition I refused to accept. I had been waiting for months for Alex to decline enough to qualify for one of these programs, and now that he had, it seemed as if not much help would be available after all.
I contacted my physician friend Rachel for advice, and in the midst of her response was this sentence: “It sounds as if you are living in the land of bad choices.” Reading it, I felt as if my brain had been rearranged, very slightly, to allow me to see the situation in a different way. A helpful way.
Practically speaking, I was living in the land of bad choices. I spent my days weighing out consequences: If I need to go to the grocery store, should I leave Alex at home and then spend my shopping trip wondering what he’s doing? Or should I take him with me? If I take him with me, should I take him into the store, where I will not be able to focus on shopping? Or should I leave him in the car, with the risk that, when I return, he might be sitting in the driver’s seat trying to put his house key in the ignition or, as it happened once, sitting in the driver’s seat of a completely different car? If I just get my groceries delivered, will I ever leave the house at all?
At that point, in the fall of 2021, I had help for about five hours a week, and the rest of the time it was just me. After I heard back from Rachel, it was still just me. The difference was that by reminding myself that I was living in the land of bad choices, then weighing each task became a bit easier. Having to choose the least bad thing is simpler than having to choose the best, it turns out. Her words were an unexpected blessing.
In the end, I chose the program that offered more days of help, when they agreed that installing security cameras outside would suffice. Before I was able to research security cameras, though, Alex got suddenly, seriously sick and ended up in the hospital.
I thought that I would use these words to guide me through life with his worsening dementia. Instead, they guided me through the last weeks until his death. Over the next six weeks, as he moved from hospital to rehab facility and back again, it became clear how much his illness had cost him. He could no longer stand up by himself or walk or feed himself. The rehab facility where he ended up was an hour from home, but, in the land of bad choices, I had to accept that a farther-away facility with trained staff was preferable to a closer one without. Just as Alex seemed to settle in and start physical and occupational therapy, there came a coronavirus outbreak, and half the residents, including Alex, were infected.
The end was slow until it was fast. Alex had few symptoms until he had trouble breathing. When the doctor called to say that Alex was too ill to be treated at the facility, I had 15 minutes to decide whether to send him to the hospital. I knew what the least bad choice was in well under 15 minutes. I was by his side when he died the next afternoon at the facility, along with our dear friend. Alex and I had first met at her birthday party more than 20 years earlier.
Now, more than three years after Alex’s death, I am no longer living in the land of bad choices, though some days it seems not far away. If I find myself talking to someone who has a loved one with dementia, I never tell them that they will simply have to do more. I wish I could say there are good choices. Instead, I often tell them what Rachel told me years ago: They are living in the land of bad choices – a shift in perspective that is both helpful and true.