“Can We Go Home, Now?” My Mom, Alzheimer’s Disease, and Our Longing for Home

I have written before about my mother, who is in the final stages of the ravages of Alzheimer’s disease.

It is a brutal disease, no question about it. It’s known as one of our “most feared diseases” for good reason. All of us fear losing our bodies. But we dread losing our minds before we lose our bodies. It just shouldn’t work that way. Unfortunately, it too often does.

My dear dad, who has cared for my mom the last seven years, since the day she was diagnosed, told me yesterday that a doctor recently referred to Alzheimer’s as the “disease with two deaths.” Before the body dies, the brain withers away; the memories, the stories, the familiarities, the comforts and regular enjoyments of life begin to die, too. This “first death” effects not only the victims, but their families and friends. They feel that death also. It might be slow. It might be gradual. But it is tragic all the same.

My dad made the hard but right decision to move my mom to a memory care facility nearly two months ago. When my sister and I and our families went to visit her a few days later, she–recognizing us (what a gift that was!)–wept as we embraced, and gently asked: “Can we go home, now?”

Those were sweet and heart-wrenching words.

But we can’t go home now, mom. Not just yet.

Now, a few months after that sweet reunion, our sweet mom is in her final days–possibly weeks–of her life on this earth.

I sat next to her yesterday, listening to her breathe deeply, quietly, comfortably. The CD player next to her, playing the classical music that she loved so much. Memories flooded over me. I thought about growing up, I thought about her life, which she enjoyed so fully. A life she lived with such love and gusto, with such happiness and positivity. With such other-centeredness. “I love you mom.” “We love you.”

“Can we go home now?” That question still haunts. What is home? Where is Home? 

This morning I picked up the book, Second Forgetting: Remembering the Power of the Gospel During Alzheimer’s Disease, by Benjamin Mast. I went to the back of the book, to the section titled “Going home.” He says this,

Visit an Alzheimer’s day center or memory-care unit and you will inevitably hear the questions and pleas:

“When am I going home?”

“I want to go home.”

“I need to get home.”

These are repeated in various ways throughout the day, and they seem to gradually increase in frequency and intensity as the day drags on. This may be a longing for a literal physical structure that they once called home, but it is also a longing for a place that is familiar, comfortable, and secure–where they feel like they belong and are loved deeply and unconditionally. We all share in this longing. As life drags on and our suffering increases, this plea to return home grows stronger…When people with dementia ask for their home, they are expressing this deep longing for a place of belonging, acceptance, and security.

Reading that, I recalled the passage in John where Jesus tells his disciples that he is about to go home, to his Father’s house (Jn. 14). But don’t worry, he said. You will come too. Soon enough. When the time is right. And be assured: There are plenty of rooms in the Father’s house, for all of you.

In coming days, my mom will escape the prison that has entrapped her for too long. She’s going home.