My Shattered Useless Fix-It Heart

As soon as I can gather the wherewithal, I'm going to get a tattoo across my chest. In capital letters, this tattoo—my first—will read "No Code." I've read articles about first responders and physicians who ignore "No Code" tattoos because, they explain, they don't know whether the message reflects the patient's current wishes. I own a large selection of Sharpie markers. Every few days, I'll add the date.

It isn't quite accurate to say that the "No Code" tattoo will be my first. I have three blue-dot tattoos that the radiation oncologist used to guide breast radiation for the third phase of treatment for triplenegative (stage IIB) cancer. Over the dot on my sternum hangs a MedicAlert necklace that identifies me as the hearing-impaired caregiver for someone with Lewy Body Dementia.

I'm 60 years old. I work full-time as a college professor. I care for my ex-husband, who is now 67. He was diagnosed at 65, just as he was retiring from a career as an academic librarian. We are fortunate: we have health insurance; we live near medical facilities; we have some extraordinarily generous friends.

Yet so much is difficult. Peter has trouble with time, so I keep track of events, appointments, and daily schedules. Peter is easily confused, so I handle medication, bills, "estate planning," and financial planning. Peter needs help with tasks around the house, so I provide plumbing services, change light bulbs and smoke-detector batteries, assemble furniture, set up electronic devices, and much more. Peter is isolated and lonely, so he comes to my house for coffee and medications every morning, for tv and medications every evening, and to report his worries, hallucinations, house troubles, and problems whenever those arise. Peter can't drive, so I organize transportation. Peter is exceedingly anxious about the bus service for people with disabilities, so he uses the bus only to go to the gym. An extraordinarily kind friend takes him grocery shopping once a week. For everything else—appointments, errands, outings—I drive. As I mentioned, I work full-time.

I can manage all of this for now, but I will need help as Peter's condition worsens. So far, I've contacted the local Alzheimer's Association representative, met with a social worker at our healthcare facility, spoken with the ElderCare organization, and asked the primary care physician and neurologist for the name of someone who can provide information about the services Peter will need. The Alzheimer's Association representative told me to start by calling the county for an in-home assessment. I called the county. Two weeks later, a social worker returned my call and told me that the county no longer conducts those assessments. The social worker at our healthcare facility told me that Medicare would cover a week-long "respite care" stay at a nearby nursing home so that I could travel to see my 92-year-old parents. I called Medicare and learned that the week of respite care is covered only for patients in hospice. The ElderCare staff member could answer none of the questions I asked. Both doctors promised in July to find out whom to contact and get back to me. It's now October, and I've heard nothing. The score: misinformation, 2; no information, 3.

It appears that no one has an up-to-date, accurate list of services for people with dementia, though everyone apologizes for the lack of information. All of these people seem kind, and all are no doubt pressed to their limits. Still: call to mind the number of people living with dementia and the number of people trying to care for them and notice that each caregiver must figure out how to manage all of the necessary care tasks without any centralized, reliable source of information and referrals. I'm quite certain that I'm just one of the thousands making phone calls to people who can't answer essential questions, waiting for calls that never come, spending hours on hold.

On balance, the misery of medical appointments...