The Choice of Care for a Loved One Is Personal

Mum used to say, ‘Never put me in a place like this’.

She said it as we stepped over the threshold and through a tall, imposing door into a nursing home—once a stately home, now a facility to care for those in a state of decrepitude.

The first thing you noticed was the smell; it assailed you as you closed the door, to sanitise your hands before sanitising was a thing. The air was saturated with the scent of whatever was being served for lunch. This always involved a boiled vegetable, boiled soft enough to be chewed between gums, meaning it was so soft there was to discerning what vegetable it was in the first place. Then add the reek of disinfectant, to mask the faint smell of pee.

Years later, someone remarked to me, "I could never live with an elderly person, somebody old and incontinent: my house would be forever doused with the stink of Old Lady Pee (as if it were a cheap perfume). I’d never get it out of the carpets."

The most infirm occupants lived on the ground floor; doors ajar to rooms where they lay prone, expressionless, sometimes their mouths had fallen open, reflecting the wide O’s of staring eyes. Sometimes they sat slumped in wheelchairs, ranks of them, parked in front of a television raucous with daytime television, all augmentative audience and pretending to be pacifist hosts.

Did they understand a word of it, I wondered as I walked by, smiling at anybody who looked at me, no matter how vacantly?

"Never put me in a place like this," Mum hissed again as we climbed the stairs to the first floor where private sun-drenched rooms spilled noise and voices into the corridor.

The incumbent we came to visit had all her faculties, was engaged, and engaging. Gracious. She was just old. Old and broken and mostly immobile. Mum made a point to visit her as often as she could. To sit for an hour or so. To bring a little of the outside world in. The hour dragged. If I were with her, I’d surreptitiously steal glances at my watch, willing the minute hand to move on.

And then, when we left, we carefully closed the big door behind us, just as the notice beside it instructed. "That's in case one of the inmates makes a break for it. Do you think?" I asked Mum once and she laughed. "Maybe."

She says it again, “Please, never put me in a place like this.”

And yet, on balance The Place was comfortable and pretty, the staff is friendly and kind, the food (vegetables aside) apparently reasonable, the gardens accessible and well-tended, and the camaraderie amongst the occupants evident, at least among those who could communicate with one another. It was a bucolic, gentle place.

Did Mum say it because she thought we might: Put her in a home? Did she say it because she thought in preempting the eventuality, she was knocking on wood? Did she really mean, please never let me be like this: dependent, decrepit, demented?

She lived with me at the end, until the very end. And yet, and yet, was that best? For her? I did my best, but it wasn’t always the best and often wasn’t even good enough.

People said to me often, “I could never do what you do.” They meant, to look after an old person whose brain was ravaged by dementia.

But what if you don’t have a better option? Did we? Or did we deem this the happiest arrangement for Mum, the right one for our family?

That’s the thing. You have to do what’s right for your situation. You have to draw up a list of pros and cons and practicalities. And whatever you decide, that decision will never be right all the time. But you’ll always know you did it for the right reasons at the time. I learned that. I learned it wasn’t easy. I learned never, ever to judge another person’s care choices, no matter the choice, to bear witness to the caring of a loved one is hard, no matter where it's done or who does it.

This is a tough disease, there’s no cure, no answers, and certainly no rights or wrongs.