In Dementia Care, There’s No Right Answer

July 3, 2025

Heather King is a writer, the director of the New London Story Show (a live-reading stage show), and the owner of Flyleaf Book Shop. She lives with her husband and children in a rural tourist town in the heart of Minnesota. Heather was the primary caregiver for both of her parents for almost ten years before her mom passed away in July of 2023, and her dad in May of 2024. You can find more of Heather’s writing on Substack.

In a blink my parents went from their doctors remarking on how healthy and active they were for their age to being diagnosed with terminal illnesses at ages 67 and 69.

It started with my dad. My sister and I sat with him in a Veterans Affairs doctor’s office hearing, “blood disorder… some numbers are low, some markers are high.” We quickly moved on to a cancer center. He was diagnosed with Leukemia. 

Whirlwind decisions were made while we tried to put it out of our minds that our mom was also showing signs of dementia and had been for quite some time. 

We spent four months at the Mayo Clinic in Minnesota for our dad’s bone marrow transplant. While we were there, my mom underwent cognitive testing for dementia (“Can you draw a clock that shows the time is 3:15?) and had a PET Scan and a spinal tap. I look back now and hate every moment of the humiliating memory test parts: her in that small office like a cornered animal, her grown daughters watching, her discomfort and embarrassment filling the room with each “What do you see on the screen?” (Spoiler: She could not name basic things out loud when seeing them on a screen. A butterfly became “those pretty flying things.”) We had no idea it was that bad. Her spinal tap led to a diagnosis of Alzheimer’s disease. 

The next many years fell away from us in a haze of constant caregiving. The painful changes in personality that dementia brought first, for my mom, anger and paranoia. Meanwhile, my dad was growing thinner and more frail after being diagnosed with post-transplant chronic Graft-versus-host-disease. He needed care, too. For the most part, I quit working and became the primary caregiver for both of my parents. In other words, I traded “work” for around-the-clock, all-day-most every-day, work. 

Much of the time, in the midst of the loss of health, each day felt like a steady shackled march to the grave.

You don’t get to stop. You can’t turn around. Your feet hurt. Hell, everything hurts. But you don’t get to take a break in a place with a nice view. You are monitoring medications, seeing doctors too often, and navigating the daily issues that dementia brings. It is all-consuming, emotionally, physically, spiritually, and psychologically. Every moment is a dance, no matter how uncoordinated you are, and you must keep going — for their safety, to meet basic needs, for dear life. 

With illnesses this cruel, you might assume all hope and light and laughter were gone. But they were not. In fact, we became better at love and hope than ever before. Better at seeing it, feeling it, and releasing it back out into the world. Of course there were bad days when none of that was felt, but we were still walking together, cracking the dry-humored jokes that run in the family. We watched the birds. We laughed with mom when she started to lighten up, the disease taking her to little-kid stage, then to toddler. She danced with my daughter, who was ten at the time, almost every day.

When our mom’s illness got “really bad” (isn’t it bad the whole time?), we decided to look into memory care facilities. Sometimes my sister would gently say it was time, and dad would say, “No, not yet.” We researched and waited for him to be “ready.” 

To make a very long story short, we did everything we could to head down the road to placing mom in a memory care unit, taking advice from others encouraging us to take care of ourselves, too. To let mom go where she would be safest. To be free of the intensity her illness had become. 

In the end, we defied all advice and decided to keep her home, hiring an in-home health care agency to provide care alongside us, giving me some breaks in the around-the-clock caregiving life I had been living for so long. It was not the right thing to do. It was not the wrong thing to do. Every situation is unique. 

For some of us, the only option is to bring a loved one to a memory care unit or nursing home. When we have to do that, we can believe that it is the right thing to do. Some of us have the capacity (time, helpers, means) to keep our person at home. Some of us do not. I realize it was a privilege for us to be able to choose at all. 

There is so much shame that rises up when you are caregiving. There is also shame in not being a caregiver. If you keep them home, you lose your patience too often, you drift away from other friends and family and feel bad about it, and you wonder if choosing memory care would have given you all more peace than you imagined it would. If you choose memory care, you feel like you’re abandoning your loved one, no matter how many experts reassure you that isn’t true. 

Dementia is an impossible disease, and so are the decisions around it. 

Almost two years after my mother’s death, I look back with different eyes and see it all clearly. There was no wrong answer. Each of us has to do what works for our family, for ourselves, in our private, unique, and nuanced lives. Like so many other things in a lifetime, this is not a black-and-white, easy-to-make decision. It is the kind of decision that will always leave you questioning. Should we have brought her here? Should we have kept her home? What was really best for her? In the end, when we say goodbye to our loved ones, all that matters is that we did the best we could with what we knew at the time, and we have to remind ourselves that we know our loved ones and ourselves better than anyone else does. 

Trusting ourselves is incredibly hard when we are depleted, brain-fogged caregivers. But alas, as so many things in life; all is grace. 

The best part? No matter what we decide, we can always change our minds. It happens all the time. Did you decide to keep them home and then find out it didn’t last until the end like you’d hoped? It got too hard and there was no money for more help? Did you bring your person to memory care and find out the facility wasn’t a good fit, and take them back home to seek more care there? It’s a process, not a script. What matters most is that we embody love through it all.