When I was a little girl, I stole a wedding ring from the neighbor’s house. Mom noticed the ring on my finger as soon as I came home. With a look of horror on her face, she asked if I stolen it. Initially, I said no. BIG mistake. Huge! My mother was aghast at my response and started the first of many fits of wailing.
Most would assume the dramatic reaction was because she realized her sweet nine-year-old daughter was a criminal with a life of hard time in her future. But no, the reaction was because I had lied. Mom had zero tolerance for lying.
The tears, head-shaking and shunning lasted several painful days. I was devastated – not so much because I had committed a felony, but because I had disappointed and hurt Mom so deeply.
As a result of that experience, I am incapable of lying. I can massage the truth, but if you ask me a direct question, I cannot lie. This can be a challenging quality to have when dealing with a parent who has dementia - especially when asked about painful experiences such as the death of a close friend or family member.
One of the first things we are often told by people who work with those with dementia is that we must learn how to lie.
Lie with kindness. Lie with purpose. Lie often. Lie strategically. Be sure to get comfortable with lying because it will be easier for everyone.
I've never been able to fully accept that advice or strategy. I have become the queen of avoidance, distraction and redirection, but when my mother looks me in the eye and asks me a question, I still feel I must answer her honestly.
One of the most difficult questions she regularly asks is, “where is your dad?”
She first started asking about my father’s whereabouts four years after his death. They had been married for over 60 years and, as her dementia advanced, she started to think he was cheating on her or had "found someone more interesting". Very much aware that she no longer thinks or acts as she used to, she felt inadequate and abandoned. It was so difficult to see and hear her disappointment.
Eventually, her insistence that he no longer loved her became too much for me to manage with redirections or reassurances. When she began asking if he was still alive, my internal struggles became even more difficult. When she emphatically repeated that she knew she could trust me to answer honestly, I felt I had to answer her truthfully. It was then that I felt the full force of the saying, “the truth hurts”. We so often casually throw those words out, but the phrase now has new meaning for me.
I told Mom, again and again, that Dad had died.
For her, the affirmation of his death was new, fresh and raw. She experienced his death for the first time each time she asked me if he was alive. Every time I answered her direct question about Dad’s death, her lips would quiver, chin would pucker, her eyes would lower and big tears would roll down her cheeks. She looked like a very sad, small child whose heart was breaking.
We would go over the details of his death. Yes, she was there with him. Yes, he knew she loved him. No, he didn’t suffer. Yes, we had a funeral – two in fact. Yes, many people came. Yes, my brother and I spoke at the funeral. Sometimes she would ask me to read her the eulogy I gave. She would thank me and say the same thing, “he was such a good guy. I can’t believe I’ll never see him again.” And then the tears would start falling.
If ever there was a time that lying would have been to her benefit and mine, this was it.
It was so difficult to see her in pain but I could not tell her Dad was alive when he wasn't. The memory of her reaction to my stealing was an important factor in my decision not to lie and cause her pain, but it was my respect for her that simply would not allow me to be deceitful. At the time, and despite knowing better at my core, I was not ready to give up the hope that Mom would remember her past – our past. Should that ever happen, I did not want her to distrust me again in the future. I did not feel I could risk her discovering yet again that I was lying to her on a day when her mind was clear.
Lessons Learned:
Each person and their experiences are unique. This is true of the person living with dementia and their caregivers. As a caregiver, you have to do what you believe is right - for you and the one you love.
The need for distraction and redirection cannot be underestimated. Seek examples. Practice. Develop skills. Become a master.
People with dementia change, often and in unpredictable ways – day by day, moment by moment - so be ready to adapt
UPDATE: As Mom’s cognition continues to decline, I have learned to lie like a champ when it comes to Dad’s health and whereabouts. I always try distraction and redirection first but when they fail, I look Mom directly in the eye and lie. For those of you who are wondering, Dad has been at a conference. He still loves Mom completely, just as he always has. In those moments, Mom is relieved and very much looking forward to seeing the only man she’s ever loved….soon.