The following story was contributed by reader Nadeen Green.
Managing a loved one with dementia…
For those of us raised with good values, the realization that it is sometimes “okay to lie” can be long in coming and difficult, particularly when the person we are lying to is a parent. One of the challenges I faced with my mother-in-law came from my need to “always be honest and truthful.” Because I am a lawyer by trade, I believed I would be able to haul Norma from her early stage dementia back through the sheer power of my exceptional (at least in my mind) powers of persuasion and logic. No one was able to convince me that this was not only an impossible task but cruel as well.
When it was necessary that Norma move into assisted living, she was very resistant. She was going to stay in her home until the “good Lord took her.” People wiser than I mentioned that they had transitioned their elder by telling them they had to move temporarily during a “home remodeling project” that never happened. I tried that suggestion, and Norma agreed to move “temporarily” while her home was “fumigated” for termites. I even created an exterminator’s work order for Norma to sign. (Not only lying, I was now forging documents!)
“Temporarily” worked because one of the symptoms of Norma’s dementia was her inability to keep track of time. Each day I told her the work would take “three more days.” This worked until it was no longer an issue.
Yet when she said her parents were coming, I told her that wasn’t possible. When she said she needed to go to their funeral, I told her that had been years ago. At first I didn’t realize that she was becoming angry with me was because I was a source of confusion and frustration. Finally, on came the proverbial light bulb. When Norma wouldn’t bathe, I created a letter that supposedly came from her doctor (forgery added to my sins), telling her why she needed to take her bath.
What is “dementia” to us is “reality” to our loved ones with dementia…we need to embrace and endorse that reality. The next time she said her parents were coming, I assured her they were, but it would be a while because of traffic. When she said she needed to go to their funeral, I told her to go ahead and eat dinner while I made the necessary arrangements. Shortly all was forgotten, but because I showed her that I appreciated her world, it was done without the hurt, confusion and stress.
Oh how I relate to your story! My mother has Alzheimer’s and I often don’t know how to respond when she asks reality-based questions.
The other night, we went out to dinner and were late in returning home. As my brother drove, she asked me if we were going to Hill Grove (where she grew up in the 30′s & 40′s). I said no so she asked it we were going to Hillside Avenue (the home my parents lived in during the 80′s – 2008. Again I replied no, that we were going to Spruce Ridge Farm. She then asked why she was remembering 19641 – which was the address of our family home on Edgecliff Blvd. in the 60′s – early 80′s. How to respond?
I told her she now lived at Spruce Ridge Farm which is on Route 13 in Old Chatham. But she kept asking about the other addresses. I came up with “Your home is where your heart is and everything you love is in the home we are going to… your husband, your pajamas and bed, your cats and your piano.” That helped a bit but it broke my heart when she continued to ask and said more than once, “Lisa, I am confused. Are we going to our house on Hill Grove/on Hillside Avenue/in Barrington?”
Based on your input, I probably should have just played along and said “yes, that is where we were going.” I will try that next time and will let you know if it helps.
I intellectually can accept that my mother’s reality has changed. But when she asks a direct question my instinctive reaction is to tell the truth and that may cause her more unnecessary confusion.
Loved the part about forging a letter from the doctor to reinforce a healthy behavior. I guess we resort to whatever it takes – in some ways the end justifies the means!
Dear Nadeen,
Your Mother is so fortunate to have someone as wise and nurturing as you to care for her. You have realized that it is more kind to “be where she is” than to tell the Absolute Truth and Nothing But The Truth! I guess most of us were raised with good values since we have such a hard time lying, especially to our parents.
Blessings to all the caregivers, especially those who do so out of love.
Thanks for this touching story. It’s hard to imagine needing to lie to our parents, but you’re right. It’s our responsibility to care for them within their reality rather than continuously try to pull them out.