The caregiving journey we were not prepared for

Something had changed with my mom. The woman I grew up with - the busy, hip-hop dancing, party host - was suddenly tired all the time, uncomfortable in social situations, and just not herself. Her initial diagnosis was mild cognitive impairment. Looking back, there were signs, but we were not prepared. I was suddenly thrust from my role as a new mom, expecting a grandmother who would be babysitting, to caretaker for my aging mother. At 66 years old with the MCI diagnosis, she was young. In the back of our minds, our family always expected her to take care of my older, and historically less healthy father. Their roles were reversed and he couldn’t take care of her.

It started with taking out her trash and helping her navigate bill pay websites, but her needs continued to grow. With my mom's condition deteriorating, I realized that we had never discussed what might happen if she became ill. By the time of her diagnosis, it was too late. Whether overwhelmed or scared, she chose not to discuss her preferences for living with this impairment. Her unexpected response of "whatever you think" left me astounded. This woman was always in charge, and would never have deferred to someone else's opinion on how to live her life.

My mom, in the last few months before we moved her into a memory care facility.

I have had to morn the loss of the woman I grew up with. She is physically here, but mentally changed.

The fact that we had never talked about this possibility made it harder.

As time went on, my family had to relocate to another state, leaving me uneasy about leaving my mom alone. My father, who was not physically capable of providing the necessary care, was adamant that they didn't need help. In the past, my mom had managed their finances, tended the garden, and kept their lives in order. Had we broached the subject earlier, she would have likely expressed a desire to hire assistance if she couldn't perform these tasks. Unfortunately, we had never engaged in those crucial discussions about the "what ifs."

It took far too long for us to arrange the necessary support for my parents. Like many, I experienced a mix of guilt: guilt for forcing them to bring in help and also guilt for not doing enough. This caretaking journey taught me a lot, and I want to help others. The conversation only gets harder as one ages, so my objective is to encourage people to talk about the "what if" and discuss wishes so that when situations change, the family is ready.