I received some thoughtful responses to the important question: “To tell or not to tell?” There were opinions on both sides, as well as corroborating experiences. I’ve come away with the overall answer: “It depends:” depends on the person, depends on the stage of Alzheimer’s, depends on the current level of consciousness.
I’m not a health or psychiatric specialist, yet from my perspective of a long term caregiver to three very different relatives I note four levels of Alzheimer’s consciousness. Consciousness is apart from ability to function and they are not necessarily congruent. Cindy’s consciousness is healthier than her ability to achieve what her mind wants to do, including communication. That means Cindy has shown each level of consciousness.
The first level is normal lucidity. This is where people differ the most, just as we all differ in how we are normal. In her normally lucid consciousness Cindy perfectly understands other people and enjoys their company. She understand moods, understands jokes, understands opinions. If other people are having a good time she absorbs that like a sponge.
Cindy, Charissa, niece Deeda, nephew Tom … and some clown
The second level is depression. The person is lucid, but the focus is self-awareness that something is wrong, whether they know the precise cause of their affliction or not. There is some unnecessary apprehension, perhaps even paranoia, that accompanies this, the reason why I consider this a lesser level of consciousness. I do not include in this times of homesickness for her pets, as she is not truly depressed by her condition at such times.
The third level is confusion. There remains an awareness of the present, but the person is in a fog as to what to do or what events mean. Cindy manifested this when in her mind there should have been four people hiking with her, yet there was only me. I’m not counting as confusion an inability to do tasks such as putting the right boot on the right foot.
The fourth level is delusion. Cindy has had some delusions, but they have been few and far between so far. For her this typically takes the form of seeing people who aren’t there. She usually realizes she’s in error when this happens and even laughs about it.
Overall I guess that Cindy is 75% lucid, 10% depressed, 10% confused and 5% delusional. Once again, this does not coincide with her need for assisted daily living, which might suggest higher percentages for confusion in particular. I would agree that there is no point to telling a person who is confused or delusional about their condition, but Cindy’s consciousness is usually above those levels
I’m mainly concerned about what to do about a rise in depressed consciousness. The answer I suspect is still “depends.” I may not be closer to the best answer for Cindy yet, but I do feel more informed and enlightened by the comments and emails I’ve received. Thank you.
