The Questions Every Family Should Ask Before Memory Care

It is unbelievable how much has happened in our caregiving journey over the past few months. At this point, very little surprises us. As a friend recently said, after everything we have been through, we are likely more empathetic, more informed, and hopefully more helpful to the Alula community. That perspective is hard-won, but it is one I hold onto.

A Day That Changed Everything

A couple of weeks ago, my mother was having a particularly difficult day. On weekends, our routine is simple and grounding. I pick her up to visit my father, and my husband and I take turns staying with her while they spend time together. When it is time to return her to her residence, my husband usually drives. He has a calm presence and is often able to deescalate moments that feel overwhelming to her.

This time was different.

The memory care unit where my mother was living has a secured entrance with a coded door. Beyond that door are half doors with childproof locks separating the congregating area from the rest of the unit. As my husband was returning my mother, another resident began calling out for help, saying she was about to pass out. At the same time, a different resident slipped through one of the half doors.

Knowing there was still a secured, alarmed door beyond that point, my husband chose to help the woman calling for assistance. No aide appeared. Minutes later, the alarm sounded. The other resident had figured out how to exit the unit. Still, no staff member arrived.

In that moment, he was managing my increasingly agitated mother, a resident who appeared to be losing consciousness, and an elopement. Eventually, once the resident was stable, he located an aide who seemed unaware that any of this had occurred. (The resident was located.)

When the System Responds Instead of Listening

The next day, I received a call from the facility. The tone was aggressive and accusatory. I explained that I had not been present and suggested they speak directly with my husband. Instead, they informed me that he was banned from ever entering the facility again. They refused to hear his account.

After days of second-guessing himself and carrying the familiar weight of caregiver guilt, my husband shifted into action. Through conversations with the long-term care ombudsman and others familiar with state regulations, we learned that barring him from the facility was not permitted under Virginia guidelines. We also learned that the staffing level in memory care at the time did not meet regulatory requirements.

From Crisis Mode to Clarity

We took several days off work to tour facilities, consult the long-term care ombudsman, and speak with attorneys, geriatricians, social workers, and experts in dementia and Alzheimer's care. The list of concerns was long, but the most troubling truth was simple: my mother's safety had been compromised.

When we first moved her into memory care, we were deep in crisis with my father and did not have the capacity to fully evaluate our options. We did the best we could with the information and energy available at the time—a reality I shared in our December newsletter, Navigating the Seasons of Care.

This time, we entered the process informed, prepared, and ready to ask hard questions.

Dignity Is Not Optional

I have always believed that people living with cognitive impairment deserve dignity, autonomy, and opportunities to remain engaged in their own lives. Memory care should support a sense of self, not erase it.

Touring multiple communities made the differences clear. When you visit a memory care facility, start by observing the residents. Do they appear clean and well cared for? Do they seem engaged or overly subdued? Ask how staff respond when a resident refuses a shower, because very few people with cognitive impairment welcome one.

Ask about staff training in dementia care. Are aides dedicated to memory care, or do they rotate between units? Are they present and interacting, or mostly on their phones?

Ask about activities. How often are they offered, including weekends? Are residents encouraged to participate in daily tasks if they are able, or is everything done for them? Look at the physical environment. Does it feel homey or institutional?

Finally, ask how often residents are able to stay through the end of their journey, and if residents have had to leave, why.

Trust Your Gut, Then Do the Work

During this most recent crisis, one of the strongest facilities we toured happened to have a room available. We were able to move my mother immediately. It is another major transition. Change is always difficult, especially for someone with cognitive impairment.

But I know it is the right decision.

Her new room is in a “neighborhood.” The aides are dedicated to their neighborhood residents. The space feels warm and familiar. The residents, each at different stages of their journey, are engaged and present.

Trust your gut. Then ask questions. Seek help from social workers, geriatricians, and people who work in this space every day. Every state’s regulations and every facility’s practices differ, and families are encouraged to consult local experts when navigating care decisions.

She is one of the people I love most in this world, and the first person to love me.

For others, caregiving may center around someone they love, someone who raised them, or someone with whom the relationship has always been complex. Wherever you fall, the weight of these decisions is real, and the care you are trying to give matters. This journey is hard, and you do not have to walk it alone.