While I couldn’t yet picture the David who would need a nursing home, he had already needed emergency care.  Following the advice of the Lewy Body Dementia Association, I gathered the documents into a folder that went in the emergency “go bag.”  I was closing the barn door months after one horse had gotten out; we had needed that bag and folder in December 2017.  Was I wasting my time now?  Maybe we would never need an ER bag.  Still, I prepared a bag and a folder for each of us.  In the bags: warm hoodies, books, snacks, water bottles to fill at water fountains (I didn’t know what was going to happen to public water fountains), and cash for vending machines.  In the folders: medical histories, insurance information, photocopies of state IDs and insurance cards, advance directives, and medication information, including doses and LBD contraindications.  But I was hoping hard that we’d never make another trip to the ER.

I’d read about people with LBD going to the ER, then into the hospital, then to rehab, then home, then back to the ER, into the hospital, back to rehab, then into a nursing home.  David had chosen palliative care and had refused invasive interventions like resuscitation.  Once he was in the ER, though, the medical staff might or might not follow the wishes he’d outlined in his advance directive. 

Also, once he was in the ER, it wasn’t clear to me whether David would give the same answers to questions about treatment that he’d given in the advance directive.  We had completed the advance directive twice: I served as the scribe the first time, just after the LBD diagnosis; Fiona served as the scribe the second time, filling out a revised but similar form.  David’s answers didn’t change.  On the other hand, he talked often about getting better.  Was that wishful thinking?  Was it confusion about his illness?  I asked some careful questions but didn’t know.  As his healthcare proxy, I planned to use the advance directive as guidance – but I kept wondering whether he might say yes to a ventilator or to CPR if he could.

That was the way of all things: plans took hours and hours but never seemed fixed.  We spent hours gathering data on expenses and working out budgets for our financial planning meetings.  Even under different circumstances, the forms would have taken a couple of days.  But David needed frequent breaks, and he also needed plenty of time to consider questions about travel, about entertainment, about gifts and other less-fixed expenses.  At last we emerged from the data-gathering and meetings with a clear budget and financial strategy.  Then David would turn up at my house for coffee with a new idea for buying land and building a house with living space for both of us.  Or he would ask if we could stop by a new apartment building and take a tour.  He asked Kate K to take him downtown so that he could explore newly built lofts.  He told her that he might sell his house and move downtown.  Every time a plan seemed to be settled, it became clear that it wasn’t.

Who could say what caused these mind changes?  If the answer was confusion or memory deficits, my job as healthcare proxy and financial POA was fairly clear.  We could explore the lofts and the apartment buildings, but I could make sure we stopped short of signing documents.  Since David had rarely regarded plans as fixed, though, I wasn’t surprised that he was haring off in other directions.  And if he was just being exasperatingly David, my role was much less clear.  I handled practical and logistical matters, and I had the legal power to overrule these ideas.  But I cared about David’s dignity and autonomy as well as his safety, health, and financial solvency.  I hated blocking all of the plans he thought would bring him joy, even though none could succeed. 

Just how would David live downtown in a loft? How would I administer meds? Keep an eye on him? Rush over to fix the toilet or the tv?  Every new scheme made me want to weep with sorrow and vexation.

Of course it all made sense: David was bored and lonely, so he spent time hatching schemes.  I had too much to do, and making the plans had taken time and attention, not to mention patience I don’t actually have.  I wanted to stick to the plans.  I knew that David needed to dream about possibilities, so I tried hard to listen and keep my mouth shut.  My clenched jaws ached.  I bit through my mouthguard.

Compared with many LBD caregivers, my circumstances were easy: I had my own living space and resources, except for my chronic shortage of patience.  I didn’t have the needs and demands of other people at home; I didn’t have life-threatening conditions of my own, or the kind of financial need that forces people to spend hours navigating programs that don’t work and negotiating with landlords and debt collectors.  And still, it was all so hard.