I’ll never forget the day that I met little Lily and her grandma, Joanie. Lily’s arms were tightly wrapped around Joanie’s neck, and she kept exclaiming, “Gammy, look at me!” “Gammy, look what I can do!” and other requests to get her grandmother’s full attention.

Joanie was not bothered by Lily’s imploring requests, and she smiled at every little thing Lily did. Lily was named after Joanie’s mother, her great grandmother, Liliana. Lily’s mother was always nearby because Joanie lived with her and Lily. They were 3 generations living together. Joanie would get up early and head to the kitchen to bake some bread or cookies and Lily would show up shortly after Joanie to ask if she could help. Joanie always had a task that Lily could do so they would work together in the kitchen to create good smells.

Lily’s mom worked from her home office as an estate planning attorney. She would meet with families and help them plan for the legal care and documents for their aging loved ones. She often refers families to our care management practice to help them navigate complex care for their aging parents or grandparents, so we work closely on a regular basis.

It was still a surprise to hear that Joanie was struggling with cognitive decision making called executive function and they wanted us to visit the home, meet with Joanie and provide guidance and recommendations. We started by visiting the home and this is when I met Lily and her grandma, Joanie. The house smelled of wonderful fresh baked cinnamon rolls. We were told, however, that the cinnamon rolls could not be eaten because salt was used instead of sugar and this was a continuing issue the past month.

One of the first priorities was to get her in for a neuro-psychological examination to determine exactly what they were facing. I attended the appointment with Joanie and was disappointed to learn that we were looking at more than mild cognitive impairment (MCI). She was experiencing Frontotemporal dementia (FTD). This disease often progresses quickly, and it affects personality, behavior, and language issues. This news was devastating to our friend. She had watched her own grandmother progress through the same disease, and she was concerned about the losses Lily would experience and she had concerns about her own future and whether she would also face the same disease.

We put our experience into action and created a care plan to discuss with all the involved family. They began grieving immediately and it was obvious this was going to be a difficult plan. The goal was to continue encouraging autonomy and independence. This included making sure the baking ingredients were still available even if the food was not edible. Finding good in-home care was imperative for Joanie’s safety. We brought in a couple of local home care agency caregivers, so she had around the clock care. They also had a nanny live-in for Lily’s care. Not knowing for sure how Joanie’s illness would progress and if there could be dangerous scenarios it was important to have a caregiver focused on Lily.

Joanie let the morning caregiver help her make baked goods and sometimes it was as simple as switching out ingredients on the fly. Her baked goods were delicious, it seemed like she remembered the tricks she knew for her baking.

FTD is just one diagnosis that affects new people every day and families struggle, unsure about how they should proceed when they receive a new diagnosis. The beauty of talking with us as soon as you receive a diagnosis is that we can guide you every step of the way and make sure that all aspects of care are properly managed.