For me, the saga began six years ago, when I offered to help a family member with some spring cleaning. I knew his place was a mess, but attributed this, stereotypically, to a single man’s lack of interest in housekeeping.
When I dove into the work, I was first puzzled and then fearful at what I found: hundreds of pieces of unopened mail, years old, randomly stacked around the apartment; threatening letters from the Internal Revenue Service; correspondence from the city about a tax lien on his condominium. This, in the home of a man who, as an actor and writer, memorized scripts in two languages, had served on the national board of his union, and could solve complicated math problems without using a calculator. Clearly, something was wrong well beyond the state of his apartment.
In AJN’s September original research article, “The Experience of Transitioning to a Caregiving Role for a Family Member with Alzheimer’s Disease or Related Dementia,” Kathleen Czekanski notes that “caregivers often assume the role of caregiving before they quite realize they are doing so.” In this qualitative study, Czekanski set out to gain an understanding of the caregiver’s experience in taking on this role, describe the meaning that caregivers find in it, and understand the strategies that they employ as they transition to “caregiver.”
She has elicited rich and poignant accounts from her study participants.
Among many insights presented here, two are particularly striking:
First, health care providers often dismissed the concerns of these family members, delaying diagnosis. Some physicians attributed symptoms to hearing loss, depression, or fatigue. As one respondent said:
“When it first began it was very, very frustrating because I knew something was wrong, and I couldn’t get his doctor to admit it. He [the physician] kept saying that it was his hearing and I knew it wasn’t his hearing.”
Second, none of the participants ever mentioned receiving help or support from a nurse; nurses seemed not to be present in their world of caregiving.
Read the full article in the September issue of AJN.