Norman has Alzheimer’s Disease and is looking for his wife. He has been going from room to room and then standing by the window anxiously. About every three minutes, he asks, “Have you seen Peggy? Do you know when she’ll be back?” Norman is beside himself with worry, but in the reality, Peggy, his wife, died over seven years ago. In Norman’s ‘World of Dementia’, however, Peggy was supposed to be home a long time ago and she is nowhere to be found. He can’t imagine where she could be, and his panic/ agitation is escalating. What is the best thing for me, as a caregiver, to do now? As I see it, I have three choices:
1. I can tell Norman the truth. His wife isn’t here because she died many years ago. Norman will then relive her death or refuse to believe me and become angry.
- I can try to distract Norman with an activity or a conversation, although he is agitated and this may be difficult to achieve.
- I can tell Norman a lie- –that he shouldn’t worry because his wife called and she is going to be a little late. If I can calm him down, then I have a much better chance of distracting him and getting his mind off of wondering where Peggy is. (Additionally, it is helpful to keep a record of what’s going on to report to his doctor because if his anxiety is constant, then medications may need to be adjusted, etc.)
People often ask me if I am comfortable with “therapeutic lying” and I say, “Not really, and I try to avoid doing it if I can.” For instance, if Ruby, who is 89, won’t go out on the bus because she has to “ask her parents”, I might say that her parents know where she is and they won’t mind if she goes. Or, even better, if I have the time, I might take a walk with Ruby and ask her to tell me about her parents, and use it as an opportunity to reminisce and help the nerve cells in her brain make connections that will ultimately help her to keep one foot in what we call the “real world” a little longer. Ruby may tell the story of her parents over and over, and this is the job of her caregiver….to listen lovingly as if it were the first time it’s ever been told, knowing that there will probably come a time when she can no longer tell it.
In the case of Norman looking for Peggy (who has been dead for many years), I would ask myself, “What is the most loving and compassionate thing I can say?”, and I believe that it has to be OK to tell someone with Alzheimer’s a fib if it makes them safer or calmer. I always try to distract first and if that doesn’t work, I do whatever it takes to help ease and soothe the anxiety.
If Dad wants the keys to the car to go to the hardware store, I think it is more compassionate to tell him that the car is in the shop than that he is too demented to drive. If Mom went out with her sister last night and danced with the “Navy Boys”, why not let her think she had a night on the town?! Remember, that in the later stages of Alzheimer’s, a person may remember something for as little as thirty seconds, although he or she can often get fixated on one thought playing over and over again like an old vinyl record when the needle gets stuck. We are dealing with a mindset that lacks logic. It is no longer a fact in the World of Dementia that because it’s hot, I should take off my jacket. Likewise, even though I am eighty- four years old, I can still believe that I have small children at home who need me. Truth as we would normally describe it in the real world doesn’t exist anymore.
Years ago, it was thought that bringing Alzheimer’s patients into the present reality was the best strategy. (This was a practice that had been very effective with Veterans who were suffering from Post-Traumatic Stress Disorder.) For instance, in Norman’s case, I would have told him that he is eighty-four years old, that his wife has died a long time ago, etc. Now though, it is the accepted practice to join someone with dementia/ Alzheimer’s Disease in his or her own world and play along. Quite frankly, it is the path of least resistance in most cases and the kindest thing to do.
I am reminded of a day when I first started working in a Memory Support Unit. I remember that day because it was my birthday and my husband was going to meet me near work for dinner. It had been a long one and I really needed to leave on time (which is not usually very easy for me to do). As I was leaving, a resident was walking towards me carrying a large tote bag. She said with a sense of urgency, “Miss, miss, can you tell me when we are going to land?” I impulsively answered, “Of course, right after the movie.” (We were really going to be playing a movie that night.) She thanked me and sat down with a smile on her face. In contrast, I also had another woman tell me earlier that week that she wished she had seen the brochure for this place because if she had, she never would have come here. She said, “All the people are old!” You see, in The World of Dementia, you can be young and on a perpetual vacation… That’s not such a bad lie to be a part of.