Reminder: There are no perfect caregivers. We all make mistakes. I share my story to help others avoid the mistakes I made in caring for my father.

I left my marriage in 2010. Weekly business trips left me without time or energy to find a new living arrangement, so I deposited my belongings with Dad and began using his house as my home base. I felt wobbly as I moved toward divorce, and I couldn’t imagine that anywhere else could feel safer or more comforting.

Home Again, but…

I soon discovered that Dad had developed some new and surprising behaviors. When Dad took my list to the grocery store, he’d return with strange substitutions. Couldn’t find green beans, so I bought cheddar cheese instead. In the past, he would have visited multiple grocery stores rather than come home without a specifically requested common item; thirty years of marriage to Mom had taught him that behavior. He would have avoided random substitutions rather than provoking Mom’s displeasure. Now when I handed Dad a list, I couldn’t guess what he might bring home.

But Mom had died nearly ten years earlier and Dad had adjusted to single life. I let myself believe that Dad bought what he wanted to eat despite the list I gave him. Passive aggressive but plausible, right? I sometimes wondered if he simply forgot to pick up an item—really, the grocery store with the huge meat department didn’t have any ground beef at all?—but I felt annoyed, not alarmed. With the benefit of hindsight, of course, I understand that these grocery store fails were early signs of dementia.

Clinging to My Blindfold

In the spring of 2011, Dad started feeling terrible pain from what he thought was a hernia. I didn’t ask much. As far as I knew, Dad could manage his medical care; I could barely handle managing my work life and snuggling my beloved dogs while reeling from an ugly divorce.

Dad and I decided to go out to lunch on the day of his doctor’s appointment to get the pain checked out. I answered emails in the waiting room while Dad saw his doctor. After about twenty minutes, Dad walked into the waiting room, his face relaxed with relief. Hernia confirmed; surgery scheduled for a few weeks away; pain management tips delivered for the interim. I didn’t ask Dad for details about his conversation with his doctor or the medication schedule he’d been given. Why would I?

By this time, Dad’s odd behavior had expanded beyond questionable grocery shopping: he forgot my birthday, forgot he’d promised to pick me up at the airport even though he’d dropped me off there for a business trip, mixed up my dogs’ names and called my cat a dog—a joke, he said, though I found it peculiar, not funny. Several weeks of normal life separated these surprising events. I didn’t force myself to consider whether these changes were significant, though fear covered me like a rash every time something strange happened. I suspected something was wrong, but I chose willful blindness. My life had fallen apart and I needed Dad to be stable, not a new source of chaos.

The Hospital

A couple of weeks after Dad’s medical appointment, I returned from Saturday brunch with friends and found him in bed at noon. He was confused, slurring his words and telling me that he’d tried to get up but had fallen. I felt what would soon become a familiar sense of foreboding. Something was wrong. Something I couldn’t quite put my finger on. Something big. I knelt by Dad’s bed and assured him in a sing-song, placating voice that everything would be fine while I did a quick search on my iPhone for signs of a stroke.

Dad underwent a few hours of testing in the emergency room before confiding in me that he wondered if Dr. J’s instructions to manage the pain could have been the problem. According to Dad, Dr. J told him to take as much aspirin as he needed, and he’d taken ten or more tablets a day. Dad had somehow connected the dots and realized that he likely had a bleeding ulcer, though he couldn’t call up the word ulcer. Sure enough, he was right, and doctors confirmed that the pain management directions Dad had followed caused it.

I intuitively knew that the error was Dad’s. If I hadn’t, I would have followed up with Dr. J to question the directions he’d given Dad. I would have asked why he didn’t warn Dad about the risk of an ulcer. I probably would have urged Dad to find a new doctor. But I didn’t. I couldn’t admit it yet, but I knew Dad was at fault, not Dr. J, and I knew that I was seeing a dangerous manifestation of a much bigger problem. I could no longer wear the blindfold that I’d slipped on months earlier.

Enter the FBI

Dad went from the ER to ICU for a few days and then to a private room. The first night in the private room, he refused to stay in bed. He believed that the FBI had kidnapped him from his Atlanta home to Virginia and that he needed to escape. A nurse called me just after midnight to let me know about that delusion, and I rushed back to the hospital to sit up with Dad all night. Dad either didn’t recognize me or believed that I was helping the FBI. We sat in an uneasy silence all night, Dad pretending to nap, me pretending to read as I felt his resentful glare. 

In the morning, bright sunshine beamed into the room through a south-facing window and Dad laughed and chatted with me, himself again. I saw no hint of the FBI delusion. I cornered the hospitalist before he entered Dad’s room to ask what was happening, feeling a cold ball of fear in my gut that I might hear the word Alzheimer’s or dementia. Instead, the hospitalist explained that Dad likely had an episode of ICU delirium, which can cause confusion, delusions, agitation, and other symptoms. I knew ICU delirium wouldn’t explain Dad’s strange behavior at home, but I didn’t press the question.

The Cost of Intentional Ignorance

I just wanted Dad to be ok, to be the steady force he’d been throughout my life. Even though I didn’t fully believe the hospitalist’s explanation, I chose to stay ignorant rather than to dig beyond asking meekly, Are you sure it’s just delirium? That decision resulted in nearly six months of increasingly frightening confusion before Dad was finally diagnosed with Alzheimer’s.

Reader, I do not recommend intentional ignorance. Not knowing is more comfortable than hearing a game-changing diagnosis like Alzheimer’s or Lewy Body Dementia or FTD, but it delays treatment. Many of the available medications are most effective (or only effective) in the early stages of dementia. Choosing not to know the truth only delays diagnosis and potential treatment. I don’t think my fear delayed treatment long enough that Dad’s progression would have been slower, but I’ll never know for sure.

Intentional ignorance was the first of my many mistakes as a caregiver. 

Learn from one woman’s emotional story about denying early signs of dementia and the importance of early diagnosis and intervention.