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This article appears in the Wilderness issue of Trinity News , the magazine of Trinity Church-St. Paul's Chapel.

Bob Simpson, a retired pastor, was diagnosed with Alzheimer’s Disease in 1995. Over a four-year period, he and his wife, Anne, wrote of their dual experiences of life with Alzheimer’s.

Bob Simpson: There is a great tendency in me to focus on what I have lost, the things I can’t do, the things I can’t remember, etc. And this type of thought then leads me to become obsessed with losses and only be aware of what is dying — or disappearing or forgotten.Then I feel that everything good is dying — and I am dying.

Anne Simpson: We live on the edge of wilderness….We are comforted by the rugged rocks, the woods, and wild creatures all around us, by nights so dark you can see each star, and by the cold, unruly, beautiful lake. Nature defines our role here.We enjoy and protect our environment;we give up all illusions that we have dominion over it.

But even though we may embrace the wilderness outside, we were not prepared to welcome it within.We struggled against fear and the unknown darkness of disease to reassert control — or the illusion of control — in our lives.

We went to a Good Friday service at the Lutheran Church, and Pastor John talked about changes in his own life, a time of sadness and loss. He said that our whole community was acquainted with Good Friday grief, and what I began to be aware of was that there really is something about it being good.

We talk about the Resurrection, but the Good Friday experience means that God is there not just in the triumph, in the end, but in the process, and there is nothing we can do that Jesus is not with us. He is there in the suffering as well as in the good times….

The process of watching my beloved husband deteriorate is painful, lonely, and immensely sad. I cannot deny it; I have spells of depression and self-pity. I have days when I am so frustrated that I go into the garage and sit in the car with all the windows rolled up, so I can scream without being overheard. I can see the losses, the bad side, the half-empty glass.

…It seems to me that if we are lucky enough to live out our allotted span, our lives assume the shape of a cross.When we are young,we reach out to embrace our parents, our peers, and the natural world around us.We stretch and grow horizontally.As we age, the outside world grows smaller. One by one,we are cut off from people and activities that have given us meaning. Now our challenge is to grow vertically — up to God, down into self. It is precisely at the place where the vertical and the horizontal come together, where the arms of the cross meet, that we can find our holy Comforter and Companion for the journey.

There is just not any place that we can go, anything we can do that he is not there. That was my healing. I realized I was not alone. I had been feeling separated; I felt alone. I believe we are all called to die ourselves that we may be reborn in Christ.

I have good days now. If I think about the past, I get sad. If I think about the future, I’m scared. I only have the present.Today is the only day I have to live.

Our meaning is given to us. We run all through life trying to find it, but it is a gift. All meaning-givers, except God’s love, go down the drain. Learn to trust every moment, every day. God has been there before you.

Bob knows what he can do, and I know what I must do. I will learn helping skills and he will learn the art of letting go. As our journey continues, we have a map to follow.

I’m not angry at God. I believe God is here, somewhere. There is a purpose. I am beholden to find it. This may go on for ten to twenty years. My reality will get very distorted. Still, this is reality.

In Aging, Henry Nouwen asks,“Where else do we realize that we are valuable except in the eyes of those who by their care affirm our best self?” Every time we care — deeply care — for another person we will learn about him or her, and we will learn about ourselves.

We need the old, the very young, the infirm, and the dependent to teach compassion, to expand the humanity of those of us who are — temporarily — of strong mind and body.When we see caregiving as the life ministry that it is, we will find it both easier and more satisfying. It is the work we have been doing — and receiving — all along.

You don’t go gentle into that dark night, but you can’t rage against it either. You have to face the darkness, eventually, and make your peace with it.

We have lived with Alzheimer’s for more than four years, and it is hard to remember what our life together was like before Bob had the disease.The wilderness is familiar now.We have a map of where we have been;we can see ahead to the next bend in the path.We have come this far,mumbling and complaining sometimes, wanting to return to our old life.Yet,we are stronger for the rigors of this passage and we are learning to travel light.

We cannot determine our pace or our final destination; we cannot make straight the path. But if we trust God to guide us,we know we will continue to be nourished by the manna of unexpected blessings.

From Through the Wilderness of Alzheimer’s: A Guide in Two Voices by Robert and Anne Simpson. Augsburg Fortress Publishers (1999).

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