“Scientific American” published an article about Alzheimer’s caregiving. Despite the title, I think the article applies to caregiving of anyone with a neurological disorder and perhaps all caregiving! Here are some excerpts.
Excerpt:
The vast majority of caregivers know full well that their spouses or parents are ill, yet they still behave in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Yes, Cathy understood that she was dealing with a disease, with someone suffering from delusions and hallucinations, but when Frank [with Alzheimer’s], panicked by imaginary thieves, refused to crack open a window, Cathy [his wife] fumed with resentment, and that feeling gradually overcame her desire to be understanding and reasonable. … [Frank] lost his ability to see his wife as a complete person.
Excerpt:
Cathy had become a prop, a vessel into whom he could pour all of his fixations, and so she found herself living with a humorless stranger with whom she had nothing in common. … [D]ementia at some point precludes [the possibility of a shared reality]. This strikes us as profoundly unfair because the collective reality that we once shared (and had come to expect) is now gone. [That] unfairness leaves us feeling resentful. …[Unfairness] registers as a loss of social connection… [Caregivers] like Cathy experience such symptoms as relentless reminders that the emotional reciprocity that had once existed between her and Frank had disappeared… Indeed, such unfairness is tantamount to loss.
Here’s a link to the full article in “Scientific American”:
The Heartbreak and Hazards of Alzheimer’s Caregiving