When You Can No Longer Call It Forgetfulness

I remember the moment I first felt that something wasn't quite right. In the spring of 2017, I received two birthday cards from a loved one—something completely out of character for her. At the time, I brushed it off as a simple mistake. But later that year, during a family conversation, she asked for someone's opinion—someone who had tragically passed away years earlier. That moment hit differently. It wasn't just forgetfulness—it was something more.

Over time, we started noticing more subtle changes. Some family members thought she was distracted, ignoring them, or simply not paying attention. Others attributed it to stress or normal age-related forgetfulness. But as the months passed, the little things added up, and it reached a point where we could no longer deny that something was changing.

She is a brilliant woman, with a sharp mind and deep cognitive reserve. In public, she could hold it together, often fooling even doctors. But behind closed doors, she struggled, exhausted from the effort of masking her difficulties. We knew we had to be proactive and seek help.

Seeking Medical Support

Getting the right medical care was not simple. Through her primary care physician (PCP), we were able to find an excellent geriatrician who worked closely with us to evaluate her symptoms and explore treatment options. She tried different medications, but unfortunately, she had poor reactions to most of them.

It took nearly a year to see a neurologist and another 18 months to get into a neuropsychiatrist. They ran tests to determine if it was Alzheimer's, another form of dementia, or something else entirely.

At times, I wondered, Does the exact diagnosis even matter? In everyday life, maybe not. But in an emergency room, it absolutely does. When she's rushed in and speaking with the medical team, her diagnosis isn't the first thing they see in her chart. Somewhere, "moderate cognitive impairment" was buried in her records, but it's not the red flag it should be. That means we often find ourselves re-explaining everything, restarting the cycle each time we enter the ER.

What to Do If You Suspect Cognitive Changes

If you've started noticing subtle changes in your loved one's memory, behavior, or ability to manage daily tasks, here are some steps that can help:

1. Keep a Record of Changes – Write down specific incidents, like forgetfulness, confusion, or personality shifts. These notes will help when speaking with doctors.
2. Schedule a Visit with Their PCP – A primary care physician can conduct initial screenings and refer you to specialists like a geriatrician or neurologist. (Depending on your loved one's mental state, sending a message or letter to the doctor ahead of time can help provide context and may lead to a smoother, less confrontational discussion during the appointment.)
3. Advocate for Thorough Testing – Screenings, neuropsychological assessments, and brain imaging can provide clearer answers. Be persistent—wait times for specialists can be long.
4. Prepare for the ER or Medical Visits – If your loved one has cognitive impairment, ensure their diagnosis is prominently noted in their medical records to avoid delays in care.
5. Find Ways to Provide Comfort – As cognitive changes progress, what soothes your loved one may evolve. For us, music helped early on, but now simple touch—holding hands or a hug—brings the most comfort.
6. Seek Support for Yourself – Caregiving is emotionally and physically exhausting. Don't do it alone—reach out to community resources, support groups, or online caregiver networks.

Helpful Resources for Caregivers

Navigating cognitive decline is challenging, but you don't have to do it alone. Here are some trusted resources to help caregivers:

• [Alzheimers.gov](https://www.alzheimers.gov/life-with-dementia/resources-caregivers) – A government-run site offering free information on Alzheimer's, Medicare coverage, treatment options, and local support resources.
• [Caregiver Action Network](https://caregiveraction.org/) – Offers forums, support groups, and practical tips for caregivers.
• [Family Caregiver Alliance](https://www.caregiver.org/) – A resource hub for caregivers supporting loved ones with a variety of health conditions, including dementia-specific guides and caregiver stories.

You Are Not Alone

This journey is heartbreaking. It's frustrating. It's exhausting. It's all the emotions at once. Some days, it feels manageable. Other days, it feels impossibly heavy. As caregivers, we do the best we can, even when we feel like we're failing.