This is a book about relating to elders, caregiving, and death for people whose personal childhood story was a horror movie, not a Hallmark card.

 

For those adults who are pursuing relationships with and/or becoming caregivers to elders who were reasonably loving, decent, and honorable in their relationships with you, those complications are difficult in and of themselves...

 

There is a group of adults whose dilemmas in dealing with the aging, illness, and death of elders are complex beyond the norm. This book is for those folks—for adults raised in families that were frightening, confusing, dangerous, sometimes criminal in their treatment of their children. The elders in these families are...people who...behaved in vicious, venal, abusive, and/or neglectful ways to those children. You are those children, grown into adults confronted with cultural and social demands to relate to those elders, and sometimes to step into the caregiver role.

This is an almost one-of-a-kind resource, since nobody seems to have put together two clear facts: a huge number of children are abused in childhood, and [in the US] a full 60% of elderly people are being cared for solely by family. That number increases to 95% if we include family taking any role in caregiving for a family member. So it is clear that many people who were abused in childhood are now caring for that abusive parent/primary caregiver in their elderly years. 

Surprisingly, there was nothing in the self-help literature (and there seems to be little or no scholarly research finished or even in process) for those adult children who are now either feeling pressured to care for their former abusive caregiver or who are already doing so. 

Obviously this can be problematic on a number of levels.

I'm only writing this review so others will know of this resource. Written in a very open and non-prescriptive style, readers can take what they need and ignore the rest. For those who want much clearer "do this" and "don't do that" guidance, this may feel somewhat nebulous. The bottom line comes down to "you do not have to care for this person who harmed you when you were the vulnerable one." 

There is tremendous personal and societal pressure to take on the role of caregiver to an elderly person, but that may be a very bad idea for a number of reasons -- both to the adult child and to the formerly abusive older person. (And not every abusive person becomes lovely and kind in old age. They may continue some abusive patterns throughout life.)

Unfortunately, the US medical system doesn't much care if this person terrorized you, they will assume you either should or must take on this new project. Armed at least with one resource, hopefully we can avoid everyone feeling like they must be the primary caregiver to the person who failed so horribly in this role years before.

I became interested in this book because as a migraine sufferer who hasn't always had my headaches under control or been able to reliably treat them, I would be shut up in my apartment, in the dark (or as dark as possible when I lived in Arizona), for up to 24 hours. I couldn't read or watch television or go online. I'd sleep but couldn't do so all day. I was bored and felt alone. The next day, when the pain was gone, it was like a first day out of prison or after a long illness. I'd be almost euphoric but also feel vulnerable, as sometimes I'd get rebound headaches. Thankfully, I now have medications both to reduce my headache days and to stop them before they become agonizing.

"Anna" has an extreme sensitivity to light that keeps her inside, in a light-tight room, not for a day but months (even years) at a time. Certain wavelengths affect her more than others, but she can't read, watch television, or use a computer. She listens to audio books, talks on the phone with others who share debilitating chronic conditions, plays mental logic games alone or with her partner or other loved ones. She understandably feels depressed and experiences suicidal ideation.

Yet the book itself is not depressing. There is a humor to her writing, and her strength in dealing with this condition is impressive, encouraging, and inspiring without being maudlin. She's candid about her frustrations, as when she talks with others with chronic conditions that don't limit them in all the ways she is limited and finds herself angry.

She's also a terrific writer; the book feels literary in its prose and structure, which includes shorter chapters ordered thematically and achronologically (in one chapter she goes through the alphabet--one of her mental games--to list all the therapies she's tried and their results). At the end of the book she explains her decisions about how to structure it and even includes a chart indicating periods when she could not leave her home at all and periods of remission when she could go out around dawn and dusk.

Perhaps the most frustrating aspect of Girl in the Dark to read about is the fact that doctors refused to come to her when she could not leave her home. She corresponded with some, but knowing that house calls have been part of the medical profession in the past (and still are in some places--or for the right price) demonstrates their reluctance--not inability--to engage with patients with rare conditions like Anna's. To me, that's inexcusable and shameful.