When Home Is Both Heaven and Hell
I have been inspired after reading some of the courageous Substack writings of other spousal caregivers recently. This is a very specific accounting of our experience with 3 different Assisted Living Facilities (ALFs). There are no judgments in this writing, only honesty based on our personal experience.
A Tender Warrior story about the decision no one prepares you for
One of the hardest—if not the single hardest—decisions a caregiver makes is if and when to move your loved one into the memory care section of an Assisted Living Facility.
The experience is universal.
It’s a tortured decision-making process—one that may involve conflicting input from family, medical professionals, and your own conscience.
Ultimately—and this is the thing no one really says—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 something you never thought would cross your mind:
When will this lead to a physical outburst?
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 your children are.
Who you are.
And sometimes, it becomes you or them.
Because somewhere deep down, you understand: this disease might take you before it takes them.
I am not sugarcoating this.
And I am not exaggerating it, either.
I remember lying in bed one night, realizing I couldn’t remember the last time I had taken care of my own health. An annual 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 scare away the demons that took over around sunset.
In that moment, I knew: Alzheimer’s could take me before it took Lee.
“Home” #1
Lee lived in three different ALF memory care settings. They were his “home” for the next 2+ years.
The first lasted two weeks.
It was a large, corporate-owned facility—about 100 residents.
The advice I was given by clinicians, social workers, and others was to drop him off and leave. Don’t visit. Let the staff tell him the house was being painted and he needed to stay there until it was done.
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’s a man—he moved into fight-or-flight mode quickly.
Antipsychotics were prescribed. Dosages increased. He ended up in the hospital for two weeks—restrained, catheterized. Eventually, the stronger medications were replaced with something gentler. Something that helped.
But he never went back.
“Home” #2
The second memory care setting was different.
A smaller, cottage-style environment—about ten residents. Some were in very advanced stages of dementia, nonverbal and immobile. Lee wasn’t there yet, which created a different kind of frustration.
This time, I was there every day. Watching. Monitoring. Managing his adjustment.
And here is something I say without reproach—but with clarity:
Our system for senior care, especially for those who are cognitively impaired, is deeply flawed.
The staff are often undereducated, undertrained, and underpaid.
Young adults—barely out of high school, with minimal training—are asked to care for people with profound and complex needs.
There is a gap there. A human one.
I spent most days of the week there—cleaning, changing, showering him—because there wasn’t enough trained support to care for him the way he needed. And I wasn’t the only family member providing hands-on care for their loved one.
💡Indeed, research has shown that “families are the invisible workforce in nursing homes and residential care facilities.” It is currently unrecognized, but essential, work in caring for family members.
And 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 “home”
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, thoughtful, and complete.
For the first time, I felt something I hadn’t felt in a long time: I felt in charge again. Not of the disease—but of his care, and my role in it.
Lee lived there for the final 14 months of his life.
Going Home…finally
His final decline lasted about three weeks. In the last 5 days, he was 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 home.
On the fifth day in hospice, he did.
I am relieved for him.
And I am relieved for me.
That is the truth we don’t often say out loud.
Caregiving is love. But it is also relentless, consuming, and, at times, unsustainable.
The Tender Warrior learns this slowly:
💡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.
The raw and honest truth?
Home can be hell.
And home can be heaven.
Sometimes—at the very same time.
This is the shout-out and tribute to every caregiver, every family member - spouse, child, grandchild, sibling - who made the choice.
And now - life goes on.
I was a caregiver for my husband with Alzheimer’s. I write about Belonging to Self, Community and Home, both during and after caregiving.
If this would be of value to you to hear more about how I restored my sense of community after 4 years of caregiving, Subscribe to Vicki’s Substack, “The Tender Warrior”