Being There: What you learn when a loved one has Alzheimer’s

Exodus 20:12 “Honor your father and your mother, that your days may be prolonged in the land which the Lord your God gives you.”

I was blessed to spend Mother’s Day with my father and two generations of incredible Henrichson mothers. I can’t say if the trip has in fact prolonged my life, but I am certain it has left me mentally and spiritually renewed. The relationship between mother and son is a precious and profound one. Sometimes it seems like a bond that can never change. Even though I am 30, my mother would still like to lecture me about how to dress, what I should be eating, and how clean my room is. Sometimes when you don’t expect it, the relationship is reversed completely.

This year for the first time I watched my father hand feed his mother. Now in her 90’s, my grandmother is no longer able to feed herself. She has been gradually slipping into dementia for the last five years. It’s been a difficult process for my family. But as I reflected on this weekend, I was more able to see God’s role in the life of my grandmother.

Seeing God amidst my grandmother’s disease has not been easy. If I’m completely honest with myself, my decision to return home this Mother’s Day was motivated as much by guilt as any other emotion. At first I was more inclined to ask my parents to visit me here in Austin rather than visit them. But I realized then I couldn’t visit my grandmother. The only way you can be with someone with Alzheimer’s is to meet them. For someone who writes so much about “the poor and the marginalized” and “social justice,” I of all people should know the importance of “being there.” A wise woman once told me that she didn’t believe God promised us we would not struggle, but He promised He would always be there with us.

When a loved one has Alzheimer’s, just “being there” just isn’t as easy as it sounds because the longer it progresses, the more different his/her world is from our own. Several years ago my parents discovered Grandma’s world was losing time. When they began remodeling their kitchen, they spent the time living with (and monitoring) Grandma in her home.

The remodeling process took much longer than they first anticipated. Grandmother would often ask how long they had been there and how long they would be there. My parents discovered they could answer “a few days” week after week without Grandmother ever noticing. If I told my grandmother I would be there for her on Mother’s Day, it wouldn’t mean anything to her. How can one give you hope when you have forgotten tomorrow is coming? I don’t know. Christ, be with my grandmother; only you can know.

More recently my grandmother lost her past. She stopped recognizing the faces in the family portraits around her house. She grew more and more uncertain that it even was her house anymore. Today we know that she mostly only pretends to remember us. How can someone be there when they are suddenly the stranger? I don’t know. Christ, be with my grandmother; only you can know.

As you can see, my grandmother’s condition has challenged me to listen for Christ in new ways. I believe Christ walks with those who need him most. If Christ only spoke through scriptures and wise words, then how could he walk with the mentally impaired? He could not be there for people who need him most. So I know God speaks without scriptures and books. If Christ only spoke through community, then how could he walk with the lonely? How could he be there for the autistic child? So I know God speaks without the church. How can Christ be with my grandmother? Her senses are failing. Her mind is playing tricks on her. Her past is disappearing. No, I know God must speak without senses. God must speak without time.

How can I feel so sure that Christ is there for my grandmother at all? I often try to think how I would feel if I were in her shoes– if I had no future, if I had no past, if the world around me was no longer all that it seemed, if everything I once took for granted were suddenly so confusing. I imagine I wouldn’t like that world very much. Try as I might, I can’t imagine much light in that world.

But what does my grandmother actually see? Flowers. It happened nearly everywhere we went, My grandmother would stop everyone mid- sentence to point to a beautiful bouquet of flowers somewhere in the room. She wasn’t imagining the flowers, mind you. It was Mothers Day after all; everywhere you looked was decorated. But no one else was noticing them. She always caught me by surprise. The first couple of times grandmother pointed them out, I thought it must have been her dementia again. But then I would turn around, and every time she was right; there they were. And I was never disappointed. They always were as pretty as she promised.

And what does my grandmother hear? Music. Despite several experiments in hearing aides, my grandmother really can’t hear anyone talking to her. We try to repeat everything we say more slowly and more loudly, but she’ll still fall asleep during long talks. But she hears music–music no one else hears. It might be only in her head, but it must be very real to her because she’ll pleasantly sing along with every word of the tune that only plays for her.

That’s my grandmother, sitting in her world with no future and no past and full of confusion. But there she is, pointing out the beauty in the world that no one else has noticed, singing along with a tune that only she and the angels know. Now you tell me how she could do that if someone wasn’t watching over her. I visited my grandmother out of concern and guilt. In the end my grandmother restored my hope and faith with her presence. How could she do that? God only knows.

My challenge to you this post is to listen for God. Your reason and your senses try to hide him away.