Of course, the excellent care had a high price tag. When the bill arrived every month, I’d go straight to the laptop so I could open the envelope and pay the bill before the dismay and worry hit.  How long would his savings last?  When would I need to apply for Medicaid?  I spoke often with David’s financial planner, and I called the county for guidance on the medical-assistance application.  As his illness progressed, David asked me less frequently about money, and that was a mercy.  Had he known how much the nursing home cost, had he seen the sharp monthly drop in his savings, he would have been beside himself.   Friends with long-term care insurance told me how much their policies would pay per month, and I told them how much David’s care cost.  The gap shocked us all. 

Because LBD has no clear pattern of progression, it’s impossible to predict lifespan from diagnosis to death.  That makes financial planning difficult.  I had to assume that David would need Medicaid at some point, and the financial planner advised me to prepay funeral expenses before I applied for medical assistance.  Cremation was in the advance directive, so that was straightforward.  But my mind went blank when I tried to think beyond cremation to something like a funeral or memorial service.  What kind of gathering, if any, would make sense in these circumstances, in these times?  What would be meaningful to Fiona?  We were at the strange point in the long, strange pandemic when it wasn’t clear whether friendships were suspended or lost.  My closest friends were wholly present.  Others had checked in once or twice a year, or not at all, and there was no possibility of reading their silence.  We were more than two years into a pandemic.  People might be overwhelmed, grieving, exhausted, speechless, hauling long-haul COVID.  But the drifting away had begun at the time of diagnosis, two full years before the pandemic.  So: what kind of gathering, if any, would make sense?

Fiona spoke to these questions with her usual wisdom (and wit).  David and Fiona and I had a long history of mocking expensive funeral and burial arrangements, so I had some confidence that we would all make the same choices.  Fiona and I looked over the cremation containers and the remains-scattering containers and made our selections.  (The pull of the Starmark TransPorter™ was strong, but we resisted — no one was going to see the cremation container, so the plainer choice was the better choice.  The box was going into the fire, not into deep space.  But still . . . how could we not feel the pull of a box called the Starmark TransPorter™?)  We agreed to have a small memorial gathering at my house, at a time when we had the wherewithal to arrange it and to be fully with the friends who decided to join us.

That left the cremation planning and payment.  Fiona and I had made our plan, following David’s wishes; all I had to do was drive across town to meet with the funeral director and fill out the forms.

This is not a guide for LBD caregivers; this is an account of a disease that slammered David and altered Fiona’s life and mine.  Still, I’ll pause to say: largely because of COVID, I took care of almost every arrangement by myself, from diagnosis to death, and that was always hard.  But nothing was harder, nothing made me feel as desolate as meeting with the funeral director to fill out the cremation forms and prepay the expenses.  I never entirely recovered, especially because it turned out that the funeral home needed my POA forms but didn’t acknowledge receipt when I scanned and sent them.  It took several emails and phone calls to shake any response out of anyone there.  Surely they wouldn’t fail to respond when called to the nursing home after David’s death.  Would they? 

Take a friend.  Go with your friend.