We are Not in Kansas Any More

“There is no place like home; there is no place like home.” We can all relate to Dorothy’s sentiments. She was surrounded with enchantment—talking animals and vivid colors—yet she still longed for black and white Kansas. In Kansas lived the people she knew and loved; things were familiar and predictable, and Dorothy knew where she fit in. Her eyes were filled with joy and relief when she saw Auntie Em, Uncle Harry, Hank and Zeek.

Now consider this scenario: Dorothy’s shoes suffered a technical difficulty and she had to stay in Oz for 40 or 50 years before she is able to return home. When she opens her eyes, she discovers that the farm was repossessed by the bank in the Dust Bowl, and the house has been moved to town. Oh, and by the way, her body was repossessed as well and was replaced with a smaller, weaker version.

Auntie Em and Uncle Henry are dead and the farmhands are long gone. Dorothy recognizes the house, and yet, nothing is the same. She longs for the familiar—the smell of Auntie Em’s cooking, the sound of pigs grunting in the yard, and the voices of the farmhands talking and laughing. She wants to go sit on the fence and watch Zeek feed the pigs, but there is no fence, no pigs and no Zeek. And she couldn’t climb a fence if she tried. Dorothy is lost once again and she cries to go home to Kansas. She is told over and over again, “This is your home, Dorothy.” But she knows in her heart that she is not home.

MGM would never have ended a movie on such a hopeless note. But life is a different story. Alzheimer’s and other forms of dementia play a cruel trick on their victims. The memories of rich, full lives are slowly and insidiously stolen from them. Alzheimer’s attacks the short-term memory first. An individual may, in the process of driving to the bank to make a deposit, forget halfway there why they are going. She may go to the grocery store and see a friend of many years and be unable to call her name. He may ask the same question over and over again.

Entire passages of time may be erased in the last stages of Alzheimer’s. “Joe” lives in a nursing home and worked as an accountant for many years, yet he tells people he is a mechanic. His family wonders, “Where did that come from?” and Joe receives the label “confused.” Yet, looking into his history would have revealed that he worked his way through college as a mechanic. He really isn’t confused; he is just living within the confines of his own memory.

The disease has eroded the past 45 years of his life and he does not remember being an accountant or getting married or having children. Thus, when his son Tom comes to see him, he decides this familiar looking man must be his younger brother Jimmy. When his wife comes to see him later, Joe tells her that Jimmy came to see him today. His wife knows that Jimmy died in an accident several years ago and she tells the nurse that Joe is having another bad day. The nurse then tries to explain to Joe that it was his son Tom that was here to see him earlier. Joe argues angrily with the nurse; he does not remember having a son, so the nurse must be either stupid or a liar, and he proceeds to call her both. The scenario above explains why it is fruitless to try “reality therapy” on an Alzheimer’s patient in this stage of the disease.

A more successful approach in dealing with Joe is to go into his reality. If he gets up and is ready to go to his job as a mechanic, go with it. Talk to him about his job, what he does, who he works with, and what he likes about it. If he tries to leave his home or the facility, explain that his boss called and said they didn’t need him to come in today. This explanation will make more sense to him than the truth of him not having worked in 10 years.

Let’s revisit Dorothy in Kansas, crying to her caregiver to go home. She is told repeatedly that she is home, and Dorothy retorts that she indeed is not. She and her caregiver are exasperated with one another and the exhausted caregiver places Dorothy in a nursing home. Dorothy continually cries that she wants to go home and the guilt-ridden caregiver takes her back to the old house. But still she says, “I want to go home.” What now?

The caregiver tries to tell Dorothy that she is old and frail and can no longer take care of herself. But she cannot get through to her because in Dorothy’s mind, she is still skipping down the yellow brick road with Toto close behind. If you want to relate to her, you had better start skipping. Talk about things in the past that she remembers—Auntie Em and Henry, or even mean Miss Gulch. Let her tell you how much she misses them. Bring food or fix things she enjoyed in her childhood. Bring pictures from the old family scrapbook or picture books of that era. There are numerous books with vivid pictures of the Dust Bowl and the Depression, of the first Ford assembly lines and electric appliances. Let her be the expert on things of the past. Encourage her to talk about what she did and what she was proud of. Part of wanting to go home is a desire to go back to a time when we were young, vigorous, and productive; a time when we felt loved and needed. Allow her to grieve for the loss of those times. Tell Dorothy she is still loved and help her feel needed. Let her know she is valued for her wisdom and her experiences.

There are days when ordinary, healthy people want things to be the way they used to be. There is no solution except to spend some time grieving the loss of these things. Children have grown and moved away, careers are over, and friends are gone. People with dementia need the opportunity to grieve just as we all do; they just need more guidance. Affirm and validate their feelings of sadness. Allow them to be sad. Then do the best you can to make them comfortable in the here and now. And if all else fails, try skipping. It is very good for the heart!