Telling a Dementia Sufferer about the Death of a Loved One
Both of my parents passed away in 2011. Mom had severe aortic stenosis with complications and ultimately died of sepsis. She left us just 4 months before Dad. Her last visit with him, in a skilled nursing facility, was a good one. After the visit she said she believed he was getting very good care. Dad had Alzheimer’s disease and likely did not recall that last visit. Our eldercare journey took a new path when mom passed. Questions we hadn’t thought to ask arose. Should or could dad attend the funeral service? Would he understand? Should we even tell him mom had passed? How would he handle the grief? Would his grief be repeated over and over like a recurrent nightmare? If we didn’t tell him, would it be lying or caring?
Ethics of Lying
As a daughter, I was raised to believe lying was wrong. Did I ever lie? Sure. As a nurse, I was taught that to lie was to be unethical. Did I ever lie? Sure. However, before you call the state board of nursing, let me clarify.
That fact of the matter is that people do lie. Much study and research has been done to determine how often we lie and why we lie; too much to cover here. One study indicated that we lie reflexively. How often have you said “I’m fine” when asked how are you are and in reality you weren’t fine? Some call this a “white lie.” Any harm done? No. As teenagers, my children lied to me about their whereabouts. I did the same as a teenager. Any harm done? Yes. It was wrong and there were consequences.
Medical professionals are expected to be honest. Integrity is important. We are expected to be truthful regarding diagnosis, treatment, and choices. Nursing is well recognized as being one of the most honest professions. Why then would any nurse, myself included, lie? Yet, nurses have noted that they will lie if they believe it was for the patient’s good. For example, telling an anxious dementia patient, asking for their spouse who died many years ago, will be here shortly. The lie may calm them and allow the nurse time to distract them, reducing additional stress and anxiety. Yes, I did this and it worked. Was there harm done? No.
In his article, Lying to people with dementia: treacherous act or beneficial therapy, Tony McElveen noted that beneficence, actions performed for the benefit of others, is a basic ethical standard and is used often to justify the use of lies in the ‘best interests’ of those being lied to.
Therapeutic Lying
Lying in the best interest of a loved one is considered therapeutic lying. Some see this as loving deception. While many people are advocates of this, there are people who believe this is wrong no matter the reason. Not surprisingly, some “sit on the fence.” As a daughter, I advocated for this, with my family and my dad’s care providers. As a nurse, I sat squarely on the fence. I was torn between telling dad about my mom’s death versus lying to and caring for my dad.
An elderly person with Alzheimer’s disease may not remember that his or her spouse (or other loved ones) has died. Martin Schrieber, author of My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, experienced this with his wife. She repeatedly asked how her parents were. He told her several times they had passed. As she continued to ask, he recognized that the devastation of the loss occurred each time he told her. He started telling her they were doing well. She was accepting of his lie and happy to hear they were well.
To Lie or Not to Lie
By the time my mom passed, my dad was less verbal, rarely had periods of lucidity, and had trouble recognizing us. At first he confused us, one for the other. He often thought I was my sister Laurie; she has red hair, I do not. Somehow, he still seemed to know which grandchild was which, even in his last months. When asked if the picture on the wall was his wife, he nodded yes but couldn’t verbalize that he knew it was her. Some days he was more responsive to our chatter than others. Many days he seemed to enjoy looking at family pictures. Other days he showed no interest. It was difficult for us to know what he understood anymore. Would he understand the death of his wife? Would we have to tell him over and over? Was it fair to put him through the pain of grieving, over and over? We didn’t know the answer to our questions. In the end we did what we felt, what we agreed, was best for our dad. We didn’t tell him.
Truth, Lying, and Caring
In retrospect, after new experiences and new knowledge, I’ve realized that perhaps we should have told dad, at least once. I worry that we may have robbed him of the opportunity to grieve the loss of his wife. Who were we to make that decision for him? Queue the guilt here. Children, as caregivers for their elderly parents, often carry a lot of guilt. I am no exception but, we’ll explore this more later, in another blog.
Amy D’Aprix, an aging and caregiver expert, suggests that we shouldn’t avoid the difficulty of sharing such news. She believes that in this particular instance, the spouse left behind has the right to feel sad and to grieve. However, to share the news over and over is perhaps cruel. In this instance, sharing the truth, once or twice, then sharing a therapeutic lie is the most caring way to approach this dilemma. I couldn’t agree more. Yes, queue the guilt, again.
The Hindsight of Lying
I can recall the looks on the faces of dad’s care providers when we asked them not to tell him that mom had passed. It was clear they thought I was a horrible daughter. However, at the time, we felt this was best for our dad. We knew him better than they. Before dad passed, I came to believe that somehow he knew mom had gone before him. Perhaps someone at dad’s skilled facility told him. We’ll never know. I like to believe that he knew yet took peace in knowing she was no longer suffering. Dad died four months, almost to the day, after mom did. I am at peace knowing we did the best we could for our parents. We may have lied but we did so because we cared.