How Can I Partner with My Grandmother who has Alzheimer’s?
By Jay McDaniel
In our relationships with friends with Alzheimer’s, we partner with God by letting go of our idea that people must be who they were in the past, and being present to them, kindly and gently, in the present moment.
As you know, my grandmother is in the middle stages of Alzheimer’s disease. She is moody or withdrawn; confused about where she is and what day it is; unable to dress herself; having trouble controlling her bladder and bowels; wandering and getting lost; and often suspicious and paranoid. She is not the Grandma I knew when I was younger. You are a theologian and a friend of hers. I am wondering if you might give me some spiritual advice on how to understand what is happening to her and how to be with her in a good way.
I am so sorry that your grandmother has Alzheimer’s. She was my next-door neighbor for many years, and she is still one of my closest friends. I have been to see her many times now. I sing songs to her and we pray together. Always we pray the Lord’s Prayer because she can remember the words. She knows my face but can’t remember my name or our personal history. There is no getting around the sadness.
Let’s get one thing out of the way first. Please don’t think of this situation as caused or planned by God. Let’s think of God as an eternal companion to all people, including all who suffer, and as a spirit of goodness and love at work in the world.
You might try thinking of God on the analogy of some caregivers who help your grandmother every day. These caregivers didn’t cause Grandma’s situation, but they are working with her to comfort her and help her in this stage of her life.
As I see things, God is a caregiver, too. It’s not that God is watching from afar. It’s that God is very much in the world, all the time, as a healing and loving spirit. God works through others, the human caregivers, for example. You, too, can partner with God’s Spirit.
How to do this? I offer nine words of advice, nine tips. Take the ones that help you and don’t worry about the others.
1. Recognize that God’s Spirit is present in your grandmother, as in you, as close to her as her own breathing. The Spirit is an inwardly felt lure toward wholeness relative to the situation at hand. Of course, she does not think of this luring presence as God or even about it at all. She is not conscious of the Spirit as a separate reality. But Spirit is a pulling presence inside her, which beckons her to live with satisfaction relative to the situation at hand.
2. Recognize that, for your grandmother, the situation at hand is now a new and strange world. She is like a traveler who has entered a land she has never seen before. It is unfamiliar to her and sometimes very frightening. Unfortunately, you cannot travel with her. Her new world would be foreign to you.
3. Know as well that God is travelling with her. God knows the new world she is in, and the feelings of fear that she has in relation to the world. God knows what it is like to forget and be afraid, not just in a general way, but in a specific way. Every moment that she feels fear and forgetfulness, God feels it too. God is not forgetting with her; God is crying out with her. This empathy, this sharing, is not all God is, but part of what God is. One philosopher puts it this way: “God is a fellow sufferer who understands.”
4. Recognize that your relationship with your grandmother can continue and even flourish, even as she is in her strange, new world. It will be a different kind of relationship, but not a bad relationship. You can be with her in a spirit of love each time you visit her.
5. Do your best to be a non-anxious presence. Don’t ask her questions she can’t answer. Don’t correct her. Don’t say. “Do you remember this or that?” What is most important is that she feels your presence. This means that you can partner with God by taking care of yourself, by doing things that help you become non-anxious, like praying, meditating, and mindfulness practices.
6. When you visit her, don’t just try to talk. Do things together if you can. Bring a scrapbook that you can look at together, with pictures of family and friends. Sing old songs that she loves: old hymns, or the songs she grew up with. Pray familiar prayers with her. Hold her hand. Smile. These are the kinds of actions that build the relationship. They are beautiful in their own right. Consider them holy because they are.
7. As you do this, try not to wish that she be “the old Grandma,” the person you knew her to be. We all change over time; we all become new persons as our lives progress. That’s the way life is. It’s a process. Let Grandma be whoever she has to be at this stage in her journey.
8. If Grandma is physically incapacitated, or incontinent, or can’t feed herself, don’t be embarrassed for her. It’s OK. Look at how the nurses and caregivers treat Grandma; they don’t think a thing about these kinds of things. They are matter of fact and efficient in their treatment; you can learn from them and be the same way. Let this be an opportunity for you to grow up and become more nurse-like.
9. Learn what lessons you can from your relationship with Grandma about how you want to live your life. She lives in the moment, sometimes happily and sometimes sadly. You can learn to live in the moment, too. She can be spontaneous, sometimes in fresh and imaginative ways. Learn from her to be fresh and spontaneous too. She suffers. Sometimes she may do this with more courage than you have. Learn to have courage, too.
I hope some of these tips help a little, Sandra. I offer one more. I have said that Grandma is on a journey and that now she is in a very strange land. You might be tempted to think that what you see in Grandma is all that there is, but I suggest you try out another way of looking at it.
Here I’m drawing from a tradition called open and relational theology, as I have been above. Imagine that every moment in Grandma’s life up to this point has been transported into God’s life, even as it passes away. Imagine that God takes into God’s own life each joy, each sorrow, each relationship, each achievement, each failure, as your grandmother experienced them, and retains them in a deep ongoing memory.
And imagine that when Grandma passes into the next phase of her journey, after she dies, she will reclaim those memories and become more fully herself. She will also be able to claim the memories of these difficult times as well, and they, too, will be integrated into her life in a more positive way. This phase of Grandma’s life is not the final phase; there’s more to the story.
I must tell you: I don’t know if this is really what happens after we die. But I do think that there’s a continuing journey after death, for all of us, and that the lure of God’s Spirit works in the subsequent phases of the journey, no less than in this one, as caregiving love. There’s always more to a person’s life and journey than meets the eye, and that includes Grandma’s life and journey. Those of us who trust in a loving God trust in some kind of fulfillment that we can’t imagine, but that is beautiful. These are my suggestions, dear friend. Partner with God in these ways, and always have hope.
Questions: Of the nine tips offered, which do you find most important? What tips might you offer besides those suggestions? If you have a friend with Alzheimer’s, how has his or her condition influenced your own understanding of God and faith? If you believe in God as an eternal companion, do you believe that God truly knows what it is like to forget, to be confused, to be afraid?
Dr. Jay McDaniel is the editor of Open Horizons and author of several books in process theology, including What is Process Thought? Seven Answers to Seven Questions (2021). One way he tries to practice open and relational theology is by offering singalong sessions in memory care units of long-term care facilities where he lives twice a week. He believes that moments of joy experienced in singalong music become part of the very heart of God, no matter how ephemeral the moments are in this life.
To purchase the book from which this essay comes, see Partnering with God: Exploring Collaboration in Open and Relational Theology.