I never really knew my father well—he just wasn’t around like he was when my older siblings lived at home. My parents divorced when I was 12, so most of my memories are of sparse “visits” from my dad. 

In terms of end-of-life plans, he didn’t have them—no paperwork, no will. When he was diagnosed with dementia, it was compounded by physical disability, and my family was collectively unprepared. Fortunately, there were enough of us to share the burden. One sibling was always nearby, and he rotated through several of our homes.

As his illness worsened and he became more difficult to manage, hospice became necessary. We did our best—and managed to care for him without major trauma, aside from some temporary strain on marriages. 

My parents had been divorced for decades, so my mother didn’t have to witness his decline until the final moments, when we all gathered around him. That night, for the first and only time, my father met Caryn—then my fiancée. When he saw her, he smiled. He died later that week with us next to him.

Caryn’s dad, Doug, was different. Despite not growing up with him, I grew to know and love him. We joked, argued, shared burritos, fixed things (well, tried to), went target shooting together, and built a quiet, sharp friendship. He never let me forget I was an Army ring-knocker who stole his daughter. I never let him forget he was the only Navy man I knew who hated boats. 

But Doug had been slipping as the years went by—getting lost, repeating things, checking out of conversations. Caryn noticed. She gently pushed Doug and her mother, Sandra, to take action. When they didn’t take any, she pushed harder. Doug resisted. Sandra, not ready to take charge, deferred to Doug, even as his cognition declined. She couldn’t get him to consider a memory care or assisted living facility. She let him cancel his long-term care and life insurance policies—an act of denial that collectively cost the family tens of thousands. 

Eventually, Sandra admitted that Doug couldn’t find the bathroom. He couldn’t cook or drive. He couldn’t be left alone. We immediately went to Florida to assess. While we were there, Doug accidentally fired a pistol into the bedroom wall during one of his obsessive “house checks.” 

That’s when we, as a couple, decisively stepped in. I called the Alzheimer’s Association for a lifeline; this was nothing like my dad’s situation. They gave me checklists, validation, and crucial advice. I also called my sister, a doctor who took my dad in when he was fading. She talked us through the haze of options, but her best advice came in nine words: “Don’t wait until it gets worse. It already is.”

The Transition from Home

There’s a dangerous in-between where your parent seems independent—but isn’t. That space is filled with risk, and the primary question to ask should be “is the situation at home safe for both parents?” We struggled with this decision before finally calling “senior placement advisors” for help finding a facility that could properly care for Doug. To complicate matters, Doug’s retirement income was just enough to negate Medicaid as a valid option, but without assistance, Sandra would only have money for about a year.

With no other option, we chose a facility based on our placement advisor’s recommendation. Finding a facility felt like shopping for a used car. Everyone had a pitch. Everyone was confident they had what we wanted. And everyone wanted a check. 

Placement fees ran $7K– $10K—non-refundable, even if the facility turned out to be a poor match. That fee partially paid the placement advisor’s commission. It didn’t matter that we used one; we would have paid the fee either way. If a facility decided it couldn’t meet Doug’s needs, it could evict him and keep the money. All we’d get was 30 days’ notice.

Moving day was brutal. You’re not just boxing belongings—you’re dismantling a life, and all but one person knows it. Upon arrival, Doug didn’t know we were moving him. We sat together in the facility’s cafeteria, eating soup and sandwiches. He thought we were at a restaurant. I felt like a traitor, but Caryn and I knew this was the only way to preserve Doug’s dignity and Sandra’s sanity. When the only choices left are bad ones, doing your best still feels like failure.

Thankfully, Sandra would be able to visit him often. She did, and according to her, it was a relief to see him taken care of while she took care of herself. However, when problems arose, they involved the things we couldn’t see. 

Treated Like a Person, Not a Problem

Two weeks later, the phone rang in the middle of the night: Doug had fallen and was in the hospital. The night staff couldn’t give us details. When we reached the day team, the tone had shifted—they told us Doug had been “too active,” difficult to manage. Without our consent, they’d given him benzodiazepines. He fell—unsupervised—and suffered a brain injury. When we pushed for answers, the response was simple: either pay for one-on-one care or face eviction.

We paid. Two weeks later, it happened again, despite the extra supervision. We had to ask ourselves: Is this best for Doug? Is more medication the answer? Is this dignified care? Absolutely not. We moved him out, ate the cost, and filed a complaint with the Florida medical ombudsman.

By the time we started the search for a second facility, we had learned hard lessons—chief among them: read every word of the lease and ask about worst-case scenarios. Verbal assurances made during a tour mean nothing if they’re not in writing. 

So this time, we asked the hard questions: What happens if he becomes aggressive? Who can authorize medications—and can they do so without our consent? What if he refuses food? What if he wanders or disappears? What care isn’t included in the monthly fee? Will the facility accept a resident who is Medicaid-pending?

This facility answered all of them clearly. The lease matched what was promised. It was expensive—but the staff cared. They treated Doug like a person, not a problem. We kept him there as long as we could collectively afford it.

Eventually, his care needs and finances converged again, and we made the difficult choice to transition him from memory care to a skilled nursing facility. This was another moment where we had to ask, what is best for Doug? Can he keep his dignity in this new facility? That answer was yes. Despite a rocky start, this final facility proved to be a blessing. They understood him.

They watched him carefully. They did not over-medicate him to keep him “manageable.” And, most importantly, they cared for him skillfully. At one point during a visit, I was in Doug’s room alone with him when he had a moment of lucidity. 

He looked directly at me and said, “Thank you, Mike, for all you’re doing.” I was overwhelmed, and couldn’t immediately respond. It threw me into the strongest memory I have of my own father—when he smiled at Caryn the only time he met her. All I could muster was, “You’re welcome” and hugged him. Before I could visit him again, Doug passed peacefully in his sleep.

Lessons We Learned 

It’s important for me to share what we learned, so that others facing the same circumstances can be prepared. Here are some of key takeaways.

• Love isn’t always soft. Sometimes it’s unflinching. Ask questions. Speak up. Stand firm.

• Know your family history. Dementia can run in families, and symptoms may appear 15– 20 years before diagnosis.

• Just because treatment is possible—like dialysis or feeding tubes—doesn’t mean it’s right. Dignity demands control. Speak for your parent when they cannot. Ask ahead of time what they would want.

• Get legal documents in place: power of attorney, healthcare proxy, HIPAA releases, and a living will.

• Secure account access. Ensure one person can manage finances and train the surviving spouse to handle essentials. This is important in unforeseen or emergency situations.

• Build your family team. Assign roles early so no one feels alone when the crisis comes.

• Read the book The 36-Hour Day. It’s the most practical and compassionate guide I’ve found.

Choose Wisely

• Research facilities in advance. Costs vary dramatically by region.

• Don’t ignore negative reviews—look for patterns: poor hygiene, understaffing, and high turnover.

• Remember: Medicare doesn’t cover long-term memory care. Medicaid might, but only after your loved one is financially depleted.

• Use professional transport for safety between facilities, especially as mobility declines.

• Beware of “dumping.” Some facilities send challenging patients to the ER and refuse to readmit them, forcing emergency placement and risking your entire plan.

Stay Vigilant

• Remove trip hazards at home and in a facility—especially rugs, poor lighting, and clutter. Even consider if your parents are wearing the right shoes (slippers aren’t always ideal).

• Once your parent is in a facility, your role shifts—but it doesn’t end. You become the watchdog, the advocate, the one asking hard questions. Check for bruises. Monitor staff turnover. Observe how caregivers interact.

• Ombudsmen can help. Learn how your state’s program works.

And finally, always keep in mind that a family member with dementia might not always remember who you are, but they almost always remember how you make them feel. Occasionally, they have moments of lucidity. The more you are present, the more likely you are to experience those valuable moments.

Most importantly, remember to give grace to yourself and others. Don’t get wrapped around regret. You can’t prevent mistakes or accidents. You can’t control everything. You can only be present and do your best in the moment. That’s what love looks like in the end.

Michael Anderson is a Ph.D. student at The Fletcher School at Tufts University, focusing on international security and technology policy. This essay reflects his personal experience as a caregiver and son-in-law navigating the emotional and logistical challenges of dementia  care.