Nicole Smith

Do not be afraid to talk about dementia. Every person with dementia is different, but there are some common threads, and caregiving camaraderie is universal. Find your people and build your team so you don’t lose yourself.

June 21, 2024

Nicole Smith is the author of Diagnosis Dementia: Your Guide for Eldercare Planning and Crisis Management and a caregiver to two parents with dementia.

We weren’t quite empty nesters, but as my aging parents’ health needs began to change, college campus visits gave way to “life plan community” tours. Dementia was nowhere on my radar but I ramped up quickly when things went sideways with my mother.

In hindsight, there had been signs: stockpiling of groceries and moments of forgetfulness, but we didn’t realize it at the time. One morning, Mom asked why there were pillows and blankets scattered on the family room floor. Her grandsons had spent the night at her home dozens of times, but she seemed baffled by the explanation. We shrugged it off and moved on.

In March 2020, just before the world shut down [in the pandemic,] I flew to Los Angeles to accompany my mother to her first neurology appointment. The physician asked basic lifestyle questions that she answered with half-truths. I shared my observations and was promptly dismissed from the room as my mother’s anger and anxiety escalated, and I sat stewing in the waiting area until they were finished. I returned home to New Jersey to hunker down and wait out the pandemic with our five children. Meanwhile, Mom remained isolated in LA, declining the invitation to join our bubble.

2021 was the year I officially joined the sandwich generation, the term given to adults caring for aging parents and their children at the same time. I made multiple flights to LA to work toward moving mom into a senior living residence. I also flew to Iowa to be with my dad as he underwent surgery for Normal Pressure Hydrocephalus, a somewhat routine procedure as far as brain surgery goes. My stepmother was diagnosed with aphasia that year too.

My kids are not toddlers, and I do not work outside the home, but I felt the full weight of what was emerging that year. Raising young kids is physically exhausting. Once they reach adolescence and early adulthood, the emotional roller coaster of hormones turns the entire household upside down. My sandwich experience was fueled by an undercurrent of worry punctuated by my daily game of Whack-A-Mole in managing appointments, schedules, incidentals, and communication for teens, twentysomethings, and elders.

As our children settled into their fall routines, issues with mom started to escalate in October, 2021. She often called in a panic and threatened suicide. Her older sister and I took turns staying with her in LA and collaborated on how to get her moved into a safe place. We hired an elder law attorney to help us evaluate options because my mother refused to leave her home. Getting her to move required involving the court system and possible conservatorship.

I also hired an elder law attorney in Iowa because my dad did not have any legal documents in place whatsoever; no will, no trust, no powers of attorney, and no medical directives. I was learning more legalese than I ever cared to understand.

Things got a whole lot worse before they got better. I was able to build a team of support through friends, family members, and paid professionals. I encourage people to hire an attorney to prepare financial and medical power of attorney documents for themselves, their parents, and any children over the age of 18. I believe this is the first step in getting organized and having conversations around end-of-life wishes and expectations.

It is not easy and it takes time. It took multiple conversations and many months to convince my dad that getting these documents done was important. Some elders in the boomer generation are wary of attorneys and financial planners. They may still have some cash stashed under the mattress.

Many older adults claim they do not want to be a burden to their children and desire to leave them some money, but lack of planning results in the exact opposite. A health crisis occurs and families are left scrambling to make life-and-death decisions and incur astronomical healthcare fees.

There are resources available to begin conversations around aging with your loved ones. Most communities have a local Council on Aging that offers classes and information sessions. They also have trained staff available to help navigate decisions and options associated with aging.

Begin to build a team of trusted individuals and put a plan in place. Family dynamics can be quite challenging. Faith communities and local libraries are additional sources for support. So many families are experiencing the challenge of juggling work, raising kids, and caring for aging parents. Caregiving is hard. You are not alone. Reach out. Do not be afraid to talk about dementia. Every person with dementia is different, but there are some common threads, and caregiving camaraderie is universal. Find your people and build your team so you don’t lose yourself.