In March, the Center for Medicare and Medicaid Services stipulated that long-term care facilities must allow visitors:

Indoor Visitation Facilities must allow indoor visitation at all times and for all residents as permitted under the regulations. While previously acceptable during the PHE, facilities can no longer limit the frequency and length of visits for residents, the number of visitors, or require advance scheduling of visits. (Ref: QSO-20-39-NH, Revised)

At last I could see his room and close the door to talk with him in relative quiet.  Even with my hearing aids, even with my remote microphone clipped to his shirt, I’d found it nearly impossible to hear his soft speech in the noisy lobby.  Now I could see what he might need or enjoy; I could bring drawing supplies and treats and home-brewed coffee (decaf, but I saw no need to announce that).  I could bring my laptop to his room and we could resume our weekly video calls with Fiona.  The MN Department of Health had issued new visitation guidelines based on changed CDC directives: “Facilities must permit residents to leave the facility, as they choose” – though “Residents who leave the facility for 24 hours or longer should generally be managed as a new admission or readmission” (MDH “COVID-19 Guidance: Long-term Care Indoor Visitation for Nursing Facilities and Assisted Living Settings”).  Others could now visit him.  I could spring him and take him to my house. 

David was using a walker by then.  There had been a dust-up in memory care: residents had argued about whose walker was whose.  From an outsider’s perspective, the walkers were identical.  But tools of all kinds become extensions of the body, and it mattered whose was whose.  The staff attached laminated license plates – vanity plates, I suppose, since they bore the residents’ names – from a variety of states.  We’d spent years in Cambridge and Boston, so David was pleased to have a Massachusetts plate on his walker. 

When I brought David to my house, we had to navigate stairs from the garage or front sidewalk into the kitchen.  I’d installed a grab bar in the garage, and I thought those stairs would be safer because they were protected from rain and ice and snow.  No matter which stairs we used, though, weakness and anxiety made stair-climbing difficult.  Once we were in the house, David was restless; he’d get up, take a half step, and lower himself back into the chair and then start hoisting himself to his feet again.  He had a compulsion that he needed to be somewhere, but once he got to his feet he wouldn’t have a direction in mind. 

How much help did he need to get safely to his feet?  How closely should I hover as he shuffled to the kitchen?  Should I bring the coffee pot to the living room, or should I shadow him as he made his own way to the coffee maker, poured hot liquid, and crossed three rooms on unsteady feet with a mug of coffee?  Oh, you sit down and relax, I’d say brightly.  I’ll get that coffee!  Was that right?  How should I have weighed risk against independence?  How much help should I have given in the bathroom?  Some of these questions would have had simpler and clearer answers if I’d been caring for someone with a different condition.  I could have asked the nursing home staff how much assistance they typically gave him with these tasks — but the flux of LBD meant that he had better balance and momentum on some days, or part of some days, than on others.  On some days, or at some times, a pronounced tremor made it impossible for him to pour hot coffee or get his clothes in place.  On other days, he would repeatedly set down the mug inches from the table.  Helping when he didn’t need help was an assault on his dignity.  Helping even when he did need help was often an assault on his dignity. 

On the way to my house or on the way back – or both – David would often ask to stop at a café or a coffee shop.  Oh, I wish we could, I’d say, and I’d explain that the COVID rules were still in place, and if I took him anywhere except my house or a doctor’s appointment, he’d have to go into quarantine for 14 days.  He’d be quiet.  Then, at some point, he’d say softly: I don’t want to go back there.