The issue of telling the truth to a person with dementia is an ongoing conversation. It comes up periodically on the various message boards as well as social media sites like Facebook and Twitter. There seems to be almost universal agreement that caregivers will find that telling the truth can actually be harmful. That happens because people with dementia often live in their own reality. They may believe that deceased parents are still living, that they themselves are living in another place than where they really live, or that someone other than one’s spouse is her spouse. To tell a person that her mother is dead can be hurtful. When a loved one asks where her mother is, it may be much better to say something like “She is at home.” The idea is to keep the answer to something that is brief and clear. There is little need for embellishment.
Up to this point, I’ve been telling Kate the truth except about her diagnosis. I haven’t mentioned her having Alzheimer’s since last summer when I did so on two separate occasions. Neither case created a problem. As time passed, I have been less willing to take a risk. I have been helped by the fact that, until this morning, she hasn’t had a serious concern about why her memory is so poor.
While I agree with the consensus that not telling the truth is often the right thing, I haven’t felt the need to apply that with Kate. That may be because she often asks me where we are, who I am, who she is, etc. It only seems natural to tell her the truth. That has worked well, but recently I have seen signs that I may need to be less truthful with her than in the past. One of those occurred last night.
As we walked from the car to the restaurant for dinner, she called me “Daddy.” Then she asked if I were her daddy. I told her I was happy to be her daddy. She pushed for the truth and asked if I were. I told her I was her husband. Once at the table, the subject came up again. This time when I told her the truth, she looked skeptical. She told me she thought of me as a good friend. She said she liked being with me and felt safe with me. What she said was especially interesting since she had said similar things to me when I assumed she recognized me as her husband. It gave me a different perspective about the things she says about me. I’ve always interpreted them as words that she would only use for a husband, but it became clear to me that there may have been many other times that she has thought of me as a good friend.
To date, I don’t think the truth has caused any problem, but another incident at lunch yesterday came closer to being just that. In that case, she brought up her mother and wanted me to tell her something about her. I began with “She was . . .” Kate quickly said, “Was?” In an attempt to soften the impact of what I had said, I explained that her mother had died thirteen years ago. Then I told her that she had done a really good thing for her mother. I told her that she had cared for her mother the last five and a half years of her life with the help of six or eight paid caregivers. Kate was very sad and teary. As I told her a little more about her mother, she recovered, and all was well. It did make me think about whether to tell her the truth again. She seems to want the truth, but I don’t want to hurt her. Knowing when it is best not to be truthful can be tricky.
Early this morning we had an experience that was a precursor to the one I wrote about in my earlier post. At 1:30, I started to get a cramp in my leg. I got up. When I got back in bed, I noticed that her eyes were open. She looked like she wanted something. I asked if she wanted to go to the bathroom. She did and wanted to know where it was. I told her I would show her. We walked to the bathroom. I asked if she wanted fresh underwear. She did. She thanked me. Before returning to the bedroom, she said, “You must have a wonderful wife.” I told her I did. She said, “She’s very lucky to have you. What’s her name?” I said, “Kate.” As we walked back to the bed, she kept thanking me. She said, “I don’t know what I would have done without you.” Before getting in bed, she asked where we were. I told her Knoxville. She said, “I mean where are we right now.” I said, “We’re at our house.” She said, “We are?” She didn’t press me for any further explanation. I was glad. At that time of the morning, I didn’t want to test my judgment about telling or not telling the truth.
Once in bed, she thanked me again. She seemed a bit nervous, not quite shaking but uneasy. I said, “You’re going to be all right. You are safe. I am right here with you. I’ll always be with you.” It wasn’t long before she said, “I feel better now. Thanks to you. <pause> What’s your wife’s name?” I told her. In a few minutes, she asked again. This time when I told her, she said, “That’s my name.” She was relaxed and soon asleep. I got up to record our conversation and returned to bed at 2:35.