One piece of advice helped me navigate my partner’s dementia

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’ll 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 Alex’s financial affairs in order. But what she said wasn’t helpful. It didn’t give me a sense of support or care. It didn’t 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 once you’re taking care of a person with dementia. It meant zipping Alex’s jacket, helping him in the shower and making every decision, small and large, for him. He was a therapist with two master’s degrees who sometimes couldn’t remember my name.

It took two years and one pandemic before I finally heard the advice I’d needed all along. I knew I wouldn’t 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 emailed my physician friend Rachel for advice, and in the midst of her response was this sentence: “It sounds like you’re 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 bring him into the store, where I won’t 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 someone else’s 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. But once I started reminding myself that I was living in the land of bad choices, 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, once 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 Rachel’s words to guide me through Alex’s life with 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 doesn’t seem 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 pass on 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.