I Told Him It Was Okay to Go
A Tender Warrior's honest account of memory care
Note: This essay deals directly with end-of-life care, hospice, and death.
One of the hardest decisions a caregiver makes — if not the single hardest — is if and when to move your loved one into memory care.
No one prepares you for it. Not really. There is conflicting input from family, from medical professionals, from your own conscience. There is the tortured back-and-forth that can last weeks or months. And then, at some point, you arrive at a truth no one says out loud:
It is your decision. Yours alone.
Because at some point, you realize you just can’t do it anymore. The mood swings and verbal aggression become more frequent. You find yourself thinking things you never imagined you would think. When will this become physical? When will I be in harm’s way? At the same time, the need becomes overwhelming — constant assistance in every facet of living. Dressing. Hygiene. Sitting. Standing. Understanding a question. Knowing who friends are. Who children are. Who you are.
Sometimes it becomes you or them.
I remember lying in bed one night, realizing I couldn’t remember the last time I had taken care of my own health. A physical. Vaccines. Preventive care — things that were once second nature to both of us. There were no normal conversations anymore. Just a tug of war about how to put socks on, or why his show wasn’t on that night, or how to quiet the demons that took over around sunset.
In that moment, I knew: Alzheimer’s could take me before it took Lee.
Lee lived in three different memory care settings over two and a half years. Each one was, for a time, his home.
The first lasted two weeks.
It was a large, corporate-owned facility — about a hundred residents. The advice I received from clinicians and social workers was to drop him off and leave. Don’t visit. Tell him the house was being painted. The hope was that he would forget. That he would adjust.
He didn’t.
He was isolated. Scared. In a locked, institutional environment. And he was a man who moved quickly into fight-or-flight. Antipsychotics were prescribed and dosages increased. He ended up in the hospital for two weeks — restrained, catheterized. Eventually, stronger medications gave way to something gentler, something that helped. He never went back to that first place.
The second setting was different in scale, if not in heartbreak.
A smaller, cottage-style environment — about ten residents. Some in very advanced stages of dementia, nonverbal and immobile. Lee wasn’t there yet, which created its own kind of frustration for him. This time I was there every day, watching, monitoring, managing his adjustment.
I was not alone in this work. A daughter, son, wife, sister would be with their loved one much of the time, providing the special touches each one needed. Even more disappointing, however, was the level of standard care the family members provided also. Showers. Walks around the block. A book. A puzzle. Basic stuff.
Research has shown that families are the invisible workforce in residential care facilities, doing unrecognized and essential work. I lived that. I spent most days of the week there, cleaning, changing, helping him shower, because the trained support wasn’t sufficient to care for him the way he needed.
The staff did what they were trained - and tasked - to do. Which just didn’t feel like enough.
More than once, I found myself thinking: Please just see him. See the man who lived a full life. Who had dreams, relationships, history. Who was still there.
Finally, after another decline, Lee moved to a small private care home.
Six residents. State accredited and inspected. Owned and run by the primary caregiver. The staff was consistent. The care was compassionate, dignified, and respectful. Communication was frequent and complete.
For the first time in a long time, I felt a change. Not control over the disease — I never had that. But something closer to agency. I felt in charge of his care and my role in it.
Lee lived there for the final fourteen months of his life.
His last decline lasted about three weeks. In the final five days, he moved to in-house hospice care.
I saw him every day. I kissed him. I told him how much I loved him. And I told him it was okay to go.
On the fifth day, he did.
Relief. That is the truth we don’t often say out loud. Caregiving is relentless, consuming, and at times unsustainable. The Tender Warrior learns this slowly, usually the hard way: you can love someone completely and still reach the edge of what you can carry. And when you do, choosing help is not failure. It is courage. It is care.
Home, in those years, was all of it at once. The locked ward and the cottage and the private room where he spent his last days. The hospital bed. The hospice pillow. The hand I held.
This was the 2 sides of home - the heaven, and the hell. Always both.
This is my tribute to every caregiver — every spouse, child, grandchild, sibling — who made the choice. Who stayed. Who reached the edge and chose help anyway.
And now, life goes on.
Vicki.
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