In a prior post, I mentioned the often-cited practice of not correcting people who have dementia. The advice is not to correct inaccuracies, in part because it will shut people down. For the most part, I follow this practice. My mother rewrites history all the time! The ones I find particularly entertaining are when she creates tales in which she tells off her brothers, sisters, parents, and teachers. In reality, my mother would never have said what she now claims to have said and these adults and older siblings would not have tolerated it. Rather, she is reimagining her life as an outspoken and wise-beyond-her-years hero. Not only do I not correct these stories but have actually come to enjoy them. I’m glad that she wants to see herself as the strong one in her family – she is strong, just not exactly in the way she describes.
The areas where I deviate from the “do not correct” advice are the places where I feel there is a benefit from correcting. For example, she often calls me Betty and thinks I’m her sister. I always correct her with my name and tell her that I’m her daughter. Why? Does it really matter? I correct her because after a few times, she says that I am her daughter and calls me by my name. On some level and for a brief time, she remembers. I want to preserve that capacity to develop short-term memories, even if it is fleeting. The only time I do not tell her who I am is when she wakes up in the middle of the night and is trying to figure out where she is. She is often confused and thinks she is still a teenager, so the first time I told her I was her daughter, she was genuinely shocked when she learned that she was a mother! I think that news was more unsettling than waking up in what seemed to be a strange place. Now I tell her she is in her bed and is safe and that she needs to go back to sleep – it usually works.
Other things that I do not correct are the basic facts about why she is here with me and who is alive/dead. I have most of this information written out on paper so she can review it in the evening if she starts asking questions. The view about not telling someone with dementia who has died is linked to not wanting them to relive finding out about the death over and over again. The problem with that approach is that my mother somehow seems to know that I’m not being honest with her. She gets upset if I say something like, “they aren’t here” or I try to make up a story. It’s like she knows that I’m being vague or lying to her. She asks detailed follow-up questions. She is relentless in seeking out the truth! In the glare of the spotlight, I invariably break down and admit that they have died. So, maybe the problem is not with my mother but with me – I’m a bad liar! Then we have the added problem of her not trusting me – for her sake and for our time together to function, she needs to trust me. So, I remind her that she is 96 and that her siblings would be very old – she seems to accept that. I often tell her that they had wonderful lives and loved her.
Another truth is that I tell her that the statue of Our Lady of Fatima that sits on the fireplace mantle was purchased on one of her European trips. She often thinks it was a gift from someone. I want her to remind her that she was adventurous and brave and independent. She gets excited that she has been on an airplane and took trips to interesting places and saw the world, even if she doesn’t remember the trips. Similarly, I tell her that her sons call every week to talk to her because a) it’s true and b) she loves that they remember her. The calls have gotten shorter over time (45 minutes became 20 minutes, and now 10 minutes). Still, she is thrilled when they call and tends to be a little more upbeat for the rest of the evening. It helps her. I tell her that she has grandchildren, though she doesn’t remember them. She is happy to hear that her sons are married and have childen and are happy. She is, after all, a proud mother who wants the best for her children.
Communication is nuanced, dementia is nuanced, memory is nuanced, humor is nuanced. These are all complex areas and are not static but are in motion. What works one month, may not work in the next month but may work again 6 months later. At one time, my mother sees humor in something and the next time, she cries or gets angry – you never know what’s coming. The fluidity of communication, dementia, memory, and humor adds to the challenge of providing care and is a reminder that everything changes, things are not linear, and memories fade and are reconfigured into a new version of reality. Sometimes, it feels cruel to tell the truth and other times, it feels cruel to lie or misrepresent. As a caregiver, it’s hard to know what to do and it’s even trickier when adding in that each person is an individual and needs to be treated as such. What works with my mother may not work for someone else; what works for someone else may be completely ineffective for my mother. So every caregiver has to make these decisions for the individual, not assume that the blanket advice will work. Listen, try, adapt.
We cannot program emotions or responses but need to be flexible to understand that whatever comes our way is part of the human condition and needs to be received with sensitivity. This is difficult. Sometimes my mother can be very angry, which may be due to a range of issue: pain from her arthritis, not being able to hear because her hearing aid batteries have died, not understanding what is going on, frustration because she cannot remember the rules of a game, and so on. Even though most of her activities are games, for her they are her “work” and need to be taken seriously. She needs to be taken seriously, even when we we are joking.
