Living with Dementia

This article is a chapter from the book Rich in Years by Johann Christoph Arnold.

“The world’s gonna have to take care of itself now!”

Though the aches and pains of old age usually start out as mere inconveniences, they soon assume more serious proportions. It is the same with the breaking down of our minds: what starts as ordinary forgetfulness and absentmindedness often progresses into the ravages of dementia, the most common form of which is Alzheimer’s. This disease has been increasingly on my mind, as several beloved members of my church have been stricken with it in recent years.

For most (if not all) of us, the prospect of losing our minds is nothing short of terrifying. But perhaps that’s because we as a society are approaching it all wrong. Maybe people would fear it less if they didn’t have to worry so much about becoming confined to a ward in a nursing home. Perhaps we need to value and cherish those afflicted by this disease, rather than institutionalize them. In my church we attempt to integrate them into congregational life and activities as much as possible. Younger members take turns helping to care for them on weekends or just spend time with them.

A disorder such as Alzheimer’s needs to be faced with patience and love in a family setting wherever possible. It can be difficult, but the alternative is much worse. The way people with dementia are often warehoused in long-term care units is something I wouldn’t wish for anyone, especially a loved one. On the other hand, countless families have no other choice than to send their parents to such a facility. No wonder they feel guilt, pain, and shame for having to do so. Yet there is no simple solution to such need. Or is there?

As hard as it may be, I often wonder what would happen if, as a society, we chose to focus more on the positive aspects of the disease: the return to childlikeness. People suffering from dementia can be a treasure, not only a burden. Alzheimer’s does not need to be an experience of shame, misery, and hell for those involved. As Detlef Manke, a pastor who worked with Alzheimer’s patients in Germany, told me:

If somebody wants to learn how to serve, let them care for somebody who has Alzheimer’s. If somebody wants to learn compassion, let them be with people who have Alzheimer’s, because there is nothing more wonderful and rewarding than to receive their love when you make them feel understood in every regard.

They also teach us to live fully in the present – this in itself can be an adventure. They may be sad or aggravated one moment, and the next moment everything is wonderful. The caregiver has to be ready to answer the same question every few minutes.

And always, they need to be respected as personalities rich in years and experience. If we think they talk nonsense, it is we who are stupid; we just do not have the key to their rich world.

Only those who find this key will experience the so-called “windows” that open even at the very last stages of Alzheimer’s. These windows open right onto eternity. Having experienced this again and again over the years, I am convinced that, at the deepest level, a person’s spirit cannot be touched by the disease.

Photograph by Phillipe Leon

As Detlef suggests, rather than trying to help an Alzheimer’s patient make sense of our world, we should try to understand theirs. Of course, knowing this does not necessarily make it easy to do. A member of my church gave me some insight into the matter. When her father-in-law developed dementia, it progressed rapidly, and it wasn’t pretty.

The disease evidenced itself in all kinds of unusual behavior. He would disappear from his house, and his caregiver would follow and try to bring him back, but it was very difficult to reason with him. He was beset by the conviction that people were plotting against him and would sometimes spend three or four hours prowling around in his bedroom looking in cupboards and under furniture with a flashlight to see if anyone was hiding there. He became violent at times, even towards his elderly wife. He resisted attempts to help him with his personal hygiene. During an attempt at a shower, he punched my husband’s nose so violently that he thought his father had broken it. In his last weeks, he refused to go to bed and would sit up in his recliner all night. His caregiver’s attempts at persuading him to take off his shoes and go to bed were futile.

To see our father go through such torment brought us to our knees in prayer. We were so helpless in trying to care for him because of his energetic resistance. We could only go through one day at a time and try not to look too far into the future. We had to remind ourselves again and again that this was not the husband and father that we knew and loved, but someone suffering from a mental illness just as people suffer from physical illness.

Through all the storms, my mother-in-law stood firm to her promise to stick with her husband until death should part them. She never stopped hoping that things would get better. Her faithfulness and hopefulness were a tremendous witness to us.

My father-in-law’s life came to an end fairly suddenly. He refused all medication and then all food and drink. He then went into a coma and died soon after. After he had gone, we could only echo the words of Martin Luther King Jr.: “Free at last, free at last, thank God Almighty: he’s free at last.”

Wherever we are given the grace to find such patience as the woman just quoted, we will discover great blessings in it. For one thing, we will have our eyes opened to something Detlef referred to, above: the way a person with dementia often lives and moves in another world.

Rebekah Domer, a family friend, experienced this firsthand with her father, Dick Domer, a brilliant man I’ve known since I was in high school. Dick’s grasp of politics, business, and social issues, as well as his wit and humor, made him an exciting person to be with. But when Alzheimer’s struck, things changed for him and for the family. Rebekah told me:

The early stages were the worst because most people didn’t believe that anything was wrong with Dad. He could be so sharp and witty, and he could remember facts and figures flawlessly. But we were increasingly aware that his brain was deteriorating. Mom and I felt the change most keenly as we were closest to him. It reached a point where Dad had to stop driving and then leave his office job.

I worried that Dad would be humiliated by these changes, but he humbly accepted them. He let Mom and me assist him at home, accepting our reminders thankfully (most of the time). Instead of becoming bitter and frustrated, Dad found new outlets in life that fulfilled him in a wonderful way. He also didn’t lose his humor. One day we ate Dove chocolate and were reading the messages. Mine said, “Relax your mind.” Dad answered, “That is, if you have one!”

He spent more time with Mom, often sitting out under the trees, reading and visiting with anyone passing by. He smoked his pipe while she knitted. He played with his grandchildren, reading to them and listening to their tales of adventure at the end of the day. Our family gathered most summer evenings around a campfire to sing American folk songs. Both my parents were musical, and Dad loved the old American songs of pioneering like “Home on the Range.”

I often wonder what would happen if, as a society, we chose to focus more on the positive aspects of the disease: the return to childlikeness.

It seemed that Dad’s love to us deepened. He became softer and more compassionate. He depended on us more, and he appreciated our help. But most of all, he drew on the deep faith in Jesus that had been the core of his life for so many years.

One by one, Dad was robbed of his abilities. Previously an avid croquet player, the day came when he couldn’t figure out how the game worked anymore. I played chess with him until that too became too difficult to understand. We then tried Scrabble. For a while, that worked, even if Dad spelled his words backwards or upside down. But then he realized, with tears in his eyes, “No, I can’t do that anymore … it’s a lot of nonsense.”

After Mom died, it became a real challenge to find meaningful ways to occupy Dad as his disease progressed. I spent many hours taking short walks with him. He loved nature and always enjoyed meeting children along the road. I took him blackberry picking along the paths. We sat out every evening watching the sun set as he smoked his pipe and talked to me about Mom, about his spiritual search for life’s meaning as a young man, and about his childhood experiences. I heard the same stories hundreds of times, but it didn’t matter. We were together. He was happy with me at his side, listening to whatever he could still recall. He was most peaceful when we just accepted him as he was, without making him do things he could no longer enjoy. We learned to accept his reality and stop expecting him to understand ours.

How can we find joy and blessings when confronted with the daily realities of seeing our loved ones change so drastically? How can we see the positives when so much of our experience is confusion, anger, and perhaps even violence? Christoph Friedrich Blumhardt, a nineteenth-century German pastor, wrote:

When you suffer tribulation, keep in mind that you must do so in such a way that it is not just a victory for yourself but a victory over suffering in general. I have experienced this among epileptics, among the blind, the lame, and the deaf, and in general among the so-called incurably sick. I tell them: Be glad that you are like this. Now bring something of Jesus’ death and his resurrection into your situation … then you will help to gain a victory for the whole world. …

Do not fear, even if you suffer in spirit and have to realize how weak you are. The Risen One can so permeate your weakness that you can be more alive than many proud people who, with all their health and strength, blithely and proudly prance through life. When you have to bear sickness, especially one that is humanly incurable, stand still, reflect, and remember the one who died and came to life.

Jesus provides an answer to every need, and God knows what is in every heart, even if we don’t. Ultimately, Jesus can and will use us, even if our minds and bodies are broken and decaying.