Hello, Memory Care

Featuring, Acronym Soup and a whole lot of forms on the side

As Nina looked to graduate from rehab, we still hadn’t totally settled on her next move. She was definitely not going back to Sunset. Despite her miraculous burst of lucidity in the hospital, her reduced cognition hadn’t rebounded, so any other assisted living was off the table for now.

Even if she could recover enough to get back into assisted living we would need to find an interim place first. That would mean one more move, which would benefit nobody except the moving companies. Memory Care, however, felt like the point of no return. Yes there would be more safety, but also more restrictions, and less stimulation. It felt like we were back in the same guilt-ridden, no-right-answer decision loop we’d been in a few months earlier.

On this round, without the prospect of her living at home, and with the reality that I would be zero help from across the country, I did even less than before. Basically, I read the deliberations in the emails going back and forth. There was what sounded like a great new facility nearby, where the memory care residents regularly circulated with the assisted living residents. This sounded like a huge bonus, that is also surprisingly rare. The same place also advertised a “Montessori approach to memory care.” That brought back memories of dropping my kids off at their Montessori preschool and wishing I could stay. Building, scooping, sorting, pouring, disassembling and reassembling things with zen-like purpose sounded like a fine day’s work. Unfortunately, the place would not be open for several months, putting us back to Square 1.

THE WRITING ON THE WALL

But, who were we kidding? Nina’s gains were things like walking 50’ with the walker, or minimizing the assistance needed for things like dressing, brushing her teeth, getting in and out of bed and using the toilet. Her milestones were graduating from Contact Guard Assistance (CGA) to Minimum Assistance (MinA) to stand-by assistance. There would be a big gap between getting out of rehab and the level of independence needed for assisted living.

By far the best Memory Care alternative was also the closest. “The Grove” was part of the whole Garden building complex she was already in. The Garden took up an entire city block with independent and assisted living, skilled nursing, rehab and memory care. It was like its own planet, orbiting a central courtyard that offered safe outdoor access. During my visit I had toured The Grove and all of us had vetted it by asking questions and meeting people while Nina was in rehab. It was walking distance from Beatie’s house in a bustling neighborhood and we already knew and loved the doorman. Shortly before she was discharged from Skilled Nursing, Nina was admitted to the Grove.

THE MOVE

As with the previous move, I did none of the heavy lifting. As her space shrunk, more of her stuff needed to be stowed in every spare area of my sisters’ homes. By the time Nina was discharged, my sisters and brother-in-law had fully prepared her room in Memory Care. I’d heard about the move to Memory Care being a complicated dance, with family crafting elaborate stories about a temporary move, and trying to recreate the new room to look like the old one to minimize confusion. In this case, however, Nina’s memories of Sunset and her life there seemed to have already faded, and there was no need to pretend. This was a clean slate, a new world for her to absorb and navigate.

Physically, the move could not have been easier for Nina—down the elevator, 50 yards down a hall, and up another elevator was all it took to get her from the Garden to the Grove. In every other way it was a huge change, a shift to another phase that came earlier than expected. It wasn’t the pit of despair at Sunset, where residents in assisted living literally looked down on the Memory Care residents, like pens in a zoo; but, it was another place and she didn’t get to contemplate or choose, another set of new relationships to make.

MORE ACRONYMS, MORE FORMS

Like every move, the move to Memory Care brings more paperwork, much of it pointed. Along with the agreements, waivers and payment plans come updates to medical documents and end-of-life decisions.

Among them is the POLST document. POLST stands for Physician Orders for Life-Sustaining Treatment. It is not a substitute for an Advanced Directive, but it is a shorthand version of it for emergency situations. It is printed on bright pink paper and posted conspicuously for emergency personnel to see, because it spells out what the patient wants them to do, or not do, if and when the deal goes down.

The POLST has three main sections where you check “CPR,” if you want to be resuscitated or “DNR” (Do Not Resuscitate) if you do not. It then specifies what level of medical intervention you want: Full, selective or comfort-based. It specifies whether you want artificially administered nutrition (AKA a feeding tube), and if so for how long; or, if you want a DNI (Do Not Intubate) order. Finally, it includes the contact info and signatures of your health care agent and doctor or nurse.

For mom, Beatie was the designated healthcare agent. We never knew if Dad had officially taken the baton for mom’s medical decisions. For sure, however, once he died Nina lacked the capacity to make her own healthcare decisions. "Capacity" refers to someone’s ability to understand information, retain it long enough to make a decision, weigh different options, and communicate their choice. On any given day, Nina was not there on all (or even some) of these fronts.

And so, it was Beatie who got the grim tasks of filling out the POLST, choosing a mortuary, the preferred method of “final disposition” and all the other things that make up a person’s official exit strategy. All such documentation at check-in makes it clear that this is the last stop along the way.

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The “Best Friends” approach and a Rooftop Oasis