Sweet Little Lies

Telling the truth is considered a good thing.  In my care-giving job we can’t always do it and still be ethical.  Our first duty is to preserve the lives of our guests, the residents of the Dementia Care community.  Disease has robbed them of their capacity to make decisions consistent with their desire to live in safety.  We can’t allow them full freedom to act or they would die. It’s not just that they could not operate a motor vehicle safely.  They would wander into the street, oblivious to oncoming traffic.  In order to preserve their dignity, we must lie to them.  In my profession, this is called gentle deception.

A reed-thin man in his nineties is determined to get on the bus.  He wants to go somewhere where all the people he believes would be waiting are long dead.  In order to get him to go to bed, we tell him the bus doesn’t run this late.  We don’t tell him the bus to where he wants to go doesn’t stop within 50 miles of here.  Tomorrow he won’t remember wanting to go.

Another is wheelchair-dependent.  He circles the facility endlessly, complaining about the “bad signal in the magnetic strips” under the hand-rails that line the walls.  We aim our walkie-talkies at the area he’s pointing to and hit the volume button, which makes a beep-beep sound.  We tell him that means the magnetic signal has been re-aligned.  He’s satisfied, and will allow us to assist him to dinner.

There’s a charming, neat, well-spoken lady who re-frames her view of the care home every few days.  She has been in this funeral home, awaiting guests for the planned viewing of the body.  She has been staying here at the college, awaiting the arrival of her parents.  Some days she will pass by in the hall and say that she is going to the movies tonight, or that she is moving her things upstairs.  She gives us the opening for the deception by asking where she’s going to be sleeping.  Each time we show her back to her same room, saying “Look.  Your things have arrived ahead of you.”  She’s delighted.

When you are answering a question from one with no short-term memory capacity, the fluidity of their time-reference makes answering difficult.  They might ask when dessert will be served.  If you answer something specific like “In 10 minutes”, they will ask the same question a minute later.  It’s possible they’ve already eaten the dessert.  The best answer to offer is any ambiguous one.  “Soon” is a good stand-by.  Ambiguity forces the brain to work on the problem, in lieu of triggering the repeat-loop.

After the deception, the next step is to set them to a task, even if the task is to rest.  Brains that can’t follow their own sense of direction still seek out direction.  Help me with this.  Let’s go see what the nurse is doing.  Look how nice it is outside.  Let’s go for a walk.  If you go to sleep now, you’ll be up bright and early to work on it.

Several residents are visited by terrible, unsettling anxiety and feelings of dread.  They say things like, “Something’s wrong!” in a tone of alarm.  We tell them they are safe, and we will protect them, like any good parent would say.  Parents know they can’t protect their children from all harm.  You say it to reassure someone you love, to help them conquer fear.  You know it isn’t true.  It’s the right thing to say.

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21 Comments

Filed under Ethics and Morality, Self-Esteem

21 responses to “Sweet Little Lies

  1. I admire your strength and your patience. Thank you for sharing these stories, Michael. You give me courage and strength to face my daily challenges. You have no idea how much you inspire me. I am grateful to you for that.

  2. It’s so amazing to see what old age might bring our way…or what might even arrive sooner. We all take for granted that life will continue as it is right now and that is so far from the truth of reality…at least for most of us. Thank you for this glimpse into the life of those you care for.

    • I’ve been quite privileged to be granted this opportunity to see things at the end of life as they really are. Most people avoid looking. It’s endlessly interesting to me. The more of us that live longer, the more common the condition will be. If you live to be 90, your chance of dementia is 1 in 10. Thank you for stopping in, Sandra.

      (Sandra writes a superb blog about many aspects of the management of your internal and external health.)

  3. Deborah

    “Better a lie that heals than a truth that wounds”… so says the proverb.

    And Oscar Wilde defined lies as “the telling of beautiful untrue things”.

    x

  4. Pie

    Not everyone would have the patience, or the inclination to ‘read’ the people in their charge. I think the residents of the Dementia Care community are very lucky to have you.

  5. Mike, you are a blessing to those that you work with. I admire you and the path you have chosen.

  6. Interesting about the brain being forced to exercise itself by ambiguity. You’re learning a lot there. Thanks for sharing it. This what you wrote is beautiful: “You say it to reassure someone you love, to help them conquer fear. You know it isn’t true. It’s the right thing to say.”

  7. I was trying to avoid directly using the term “brutal honesty”. I’m happy I got away with it.

    … and you’re right. I’m learning tons, and most of it is important knowledge I had little grasp of previously.

  8. One time I was in a nursing home visiting a friend and the lady across the hall kept asking when she could go home. Tore me up, but Mom said she won’t remember in 15 minutes…..I think she thought we were relatives.

  9. My grandma has dementia, and so I really related with this article.

  10. Hi Mikey, Reading some of your responses as you suggested. I’m a nurse with over 20 years working with people who have dementia. I also have a masters degree in geriatric long term care. You make a point I agree with. There is so much to learn and our patients keep teaching us. We never learn it all.
    I believe in what I call common sense dementia care. The story you read about Elizabeth is just one of many in my book. The idea of her story was that we can change the mood of people with dementia by doing something for them that they enjoy. If someone is being negative, do something positive. We all do this for ourselves every now and then. For some people it is a chocolate kiss, for others a cup of tea or a cigar. Hot bath? Massage?, Petting your dog? If we can discover what they like, it’s easier to work with people who have dementia and adds a little happiness to their day.
    My guidelines for common sense care are simple. Here are 4 of the 15.
    ! Put yourself in the place of the person with dementia to find a solution to their problems
    2. Communication is key. Approach the person with dementia from the front, communicate at eye level (standing above them is threatening) Speak slowly and distinctly in simple terms and short sentences and monitor your body language. You can be saying wonderful things, but if there is a frown or stress on your face, that is what a person picks up.
    3. Validate the feelings of people with dementia.
    4. Consider the whole person, not just the dementia.
    Sounds like you are already moving in this direction. It is rare to find someone with your compassion. I’ve delt with many nursing assistants for whom it was just a job. I’d rather hire people like you.
    Stephanie
    kissesforelizabeth.com

    • Thanks again, Stephanie. Those are indeed sensible principles. I sort of absorbed similar axioms on the job. The most difficult resident I ever had really just wanted to abuse the caregivers. It restored her sense of control. Because I pretended to be genuinely hurt by it, but kept returning to assist her, she asked for me even when I wasn’t in her section. A bit ghastly I admit, but you have to do whatever works.

  11. Pingback: I worked in a specialized dementia care facility for nine months « kissesforelizabeth

  12. My grandparents were just diagnosed with Dementia this year. I myself have worked in nursing homes over the past few years or I voluteer. I prefer to work in the Dementia units. The work seems to be more satisfying than in any other unit. I found your post to be spot on what a typical day is like caring for the elderly in the Dementia unit. Sometimes, I would feel very guilty about lying to the residents. The above post has eased my mind about the lies. I really do not like to work in nursing facilities that keep the residents drugged so much, that they stay asleep all day and all night. Everyday, the residents would tell me the same stories from their past over and over. I did not mind. I rather enjoyed the stories about Vietnam or what life was like in the old days. The residents (even with Dementia) taught me so much about American history. There was a particular resident at a very expensive facility I was working in, who actually worked as an undercover CIA agent abroad. He would tell me true stories of his undercover work (even with Dementia). He could never remember each day that he had already told me about all of his undercover work in Germany. I thought the stories were made-up at first (due to him being in the Dementia unit). I later learned that they were in fact true. His family brought in all of his medals and hung up some CIA letters from 30 years ago in his room. I was completely amazed!

    You have put my mind at ease for having to lie to my grandparents and when caregiving. I too really do always try to make the residents feel safe and secure. They all become a part of my family, when I have worked on a unit for so long. Right now, I am freelance caregiving. I am trying to get work for hospice to travel to all of the facilities in my area. Keep your fingers crossed.

    Thank you.

    • I’m so happy you were reassured by my experiences. I was trained by one of the experts in this state. I learned the “gentle deception” concept from her. After all, the most important thing is to keep them safe and comfortable, and if they can’t properly organize thought as they did before, you must go with the flow as it is now and shepherd them to bed, meals and baths.

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