Most caregivers hear them every day: questions. Or rather, a question, asked repeatedly, with only minutes or even seconds in between. We give answers, but the answers don’t help; they’re either rejected or immediately forgotten. Caregivers may get used to this phenomenon, but dealing with it never gets any easier.
Mom’s questions usually dealt with something that made her anxious. “Where is the car? Is it safe?” Or “Did you pay the light bill?” Or “Do we have enough money?” At best, her litany sounded like what I used to hear from the back seat of the car: “Mom, are we there yet? Are we there yet?”
The hardest of Mom’s questions, however, had to do with “going home.” She would look at me with complete trust, her eyebrows raised in anticipation of her wish being granted. “Are you going to take me home now? I want Mama. Can we go home now?” As Alzheimer’s took more and more of Mom away from us, I armored my heart with thicker layers of protection. I made it hard and heavy as granite. But each time she gave me that look of sweet expectation and asked me to take her home, I felt the rock crack and another piece of it fell away.
So how do we answer when our loved ones ask for this impossible thing? Well, first we can think about what they really want. In my mother’s case, I knew she wasn’t referring to the physical structure where she and Dad had lived for almost fifty years; we were in that home. Yes, it’s possible she didn’t recognize it at that particular minute, but Dad was always with there and she never lost knowledge of who he was. Perhaps she would have remembered her childhood home if we’d taken her there, but somehow I don’t think so.
I think Mom wanted a feeling, not a place.
“Home” is a word that carries powerful feelings. Maybe it makes us think of safety and security, maybe just a place to sleep and eat, maybe a place of danger and pain. I think Mom realized at some level that this house where she lived now was a place dominated by confusion and fear. The man she knew and, I believe, still loved couldn’t make it comfortable for her. Though he took loving care of her, he also tried to make her do things she didn’t want to do. Neither he nor I could answer her questions and when she didn’t understand what we were saying, she was afraid.
But the home of her childhood seemed to carry no threats. Mom had always spoken of her mother as gentle and loving. My experience from childhood to early adulthood is that my grandmother and Mom shared absolute trust and devotion.
And that’s what I think “going home” meant to Mom: getting back to a place where she was sure she was loved by people she could understand and trust.
I’ve heard other caregivers voice the same kind of heartbreak I felt: anguish that I couldn’t take Mom back to her childhood; sadness that I couldn’t explain to her why it was impossible to go back; and despair at my inability to make her feel safe and secure today.
But gradually I found there were things I could do to help her when she asked about home.
I showed her pictures of houses and asked her what her house looked like. Was it big? Did it have a tree in front? Was the house white? Simple yes or no questions, posed slowly, one at a time, would sometimes distract her from insisting she had to go there. The wording of the questions gave her words she could use to answer me.
I talked about my grandmother, repeating things Mom had told me. “She came to the United States on a ship, right? And she read books to you at naptime. Did she like tea? Or coffee?” At times it seemed to me Mom remembered the things I talked about. But even when she didn’t, I think at least some of my comments and questions found tiny niches in her brain where they could settle without confusing her.
Handling these difficult questions about a home our loved ones cannot return to is like many other aspects of caregiving: it’s easier when we approach from the positive side of the subject.
We can look at pictures and smile and tell old stories that seem new to our loved ones. And in our hearts we can remember we’re not alone. Other caregivers face what we’re facing, feel what we’re feeling. Of course, the biggest encouragement for all of us is the glorious knowledge that one day our loved ones will be home. We’ll all be home. Safe and secure. At last and forever.
“In My Father’s house are many mansions;if it were not so, I would have told you. I go to prepare a place for you.And if I go and prepare a place for you, I will come again and receive you to Myself; that where I am, there you may be also” (John 14: 2-3 NKJV).
Father, thank You that we live out of the firm belief that one day You will bring us home again. Even though our loved ones may not understand that truth, let them see and share the comfort it brings us.
Alzheimer's: Hope and Help for Caregivers 