When Stepping Up Means Falling In

Written by: Matt Tullis

My mom’s dementia came to dominate much of our family life. While it has affected my mom most deeply, it has come to dominate one person's life even more: my dad.

In our family, my mother ran the show. My dad would go to work and my mom would do almost everything else other than mow the lawn (which we kids did). Mom raised us: she fed us, cleaned up after us, and tucked us in at night. She got us everywhere we needed to be. She managed all the accounts, paid all the bills, filled out all the forms, and ensured we got to the right doctor at the right time. Like every family, we had our highs and lows and it was always our mom that carried us through the lows. I like to say she threw us all on her back and carried us through life.

Now my dad suddenly needed to provide constant care for her, ensuring she got her medications at the right times, taking care of meals and managing all the household duties. Everyone in my family was surprised at how well he answered this new calling, but we could see he was struggling. Even more fundamentally than having a ton of new responsibilities, my dad had lost his life partner, his lover, his rock and his best friend. And on top of that, as sometimes happens with dementia, at times she had become his worst enemy.

Many mornings, the first thing my mom asks my dad is “What are we doing today?” He may answer that they have lunch plans with someone. She’ll get mad and ask why he didn’t tell her so that she could have gotten a haircut or something else that might worry her. He usually replies reflexively with logic instead of emotion: “I did tell you.” This rarely works and the two of them are fighting before they even get out of bed. These newfound problems with their communication related to dementia did not mix will with the playful banter they had built throughout their almost 60 years of marriage.

You see, my parents loved each other very much but never got along. Ok, that's not entirely true, but they loved to give each other a hard time and they teased each other every chance they got with dry humor or sarcasm. This just doesn't work very well any more when witty exchanges become relentless criticisms. While different people manifest dementia in different ways, repetition and perseveration are almost ubiquitous.  And for my dad, being told he should have chosen to wear different pants because he had no butt for the seventh time at dinner wasn't fun. It was exhausting.

Adding it all up, my dad was beyond depressed and often joking about suicide in an unhealthy way. I was seeing firsthand how dementia causes these vicious cycles that can destroy not just the person living with dementia's life, but the life of their primary caregiver as well. And the effects don't stop there.

Next: The Whole Village Feels It