“Interestingly, despite the severity of disease, the level of burden and the presence of crises in the majority of cases, most [caregiver] respondents indicated that they were not currently receiving paid help to assist with care, and most had not received paid help in the past.”

–Galvin, James E et al. “Lewy Body Dementia: Caregiver Burden and Unmet Needs.” Alzheimer Disease and Associated Disorders vol. 24,2 (2010): 177-81.  doi:10.1097/WAD.0b013e3181c72b5d

Hiring “paid help to assist with care” might be possible if agency caregivers didn’t cost $35 an hour, if respite care didn’t cost $500 a day, if paying someone to dispense pills from a seven-day pill-organizing container that I filled didn’t cost $70 a day; creating a financial plan that allowed for “paid help to assist with care” might be possible if the prognosis were not five to eight years but maybe two to twenty. 

There comes a time when, one way or another, many pay for care, either at home or in a long-term care facility. Then the assets go to paying for care until there is nothing much left, and then the state pays what it will, for what it approves.

There is no setting aside the cost.

But there are other reasons besides cost for deciding not to hire in-home care.  In the time of COVID, of course there were, and are, other reasons.  Poorly paid caregivers have multiple clients, many of whom are particularly susceptible to the virus.  Even the most conscientious caregivers may be asymptomatic, or presymptomatic while “shedding the virus” as they do the work that sustains the lives of their patients.  Many people who were paying for help with care ended their contracts in the first year of the pandemic. 

The calculation may well be: it’s me until it’s not me.  The tasks for which it’s easy to find help — grocery shopping and meal preparation and laundry and cleaning — are the least of it.  Who else could manage the household finances, set up and drive to the appointments, exchange messages with doctors, organize the prescriptions and the daily medications while easing the anxiety and reaching through the hallucinations to the terror and distress?  Who else could anticipate the crises and assemble the go-bag and the folder with insurance information, a current list of medications, warnings about antipsychotics and other dangerous medications, contact information for the primary care doctor, the neurologist, and the palliative care doctor?  Who else could scan and print the most recent healthcare directive and the power of attorney forms and send them to all of the clinics and the local hospital? Who else is there to stand in for everything that has been lost and every friend who has drifted away? 

The disease is severe.  The care burden is weighty.  The crises seem, or are, inevitable.  Just who would provide this level and kind of care for cash?