At home

Taureef Mohammed

“HE NEEDS to go in a home,” the son said, referring to a retirement home or nursing home.

The concluding statement from the old man’s son, at the end of the one-hour home visit, caught the doctor – who was seeing this family for the first time – off guard. It made him uncomfortable, perhaps even a bit disappointed.

In fact, the doctor was not sure what he felt, but, whatever it was, it did not feel right. The old man was already where he needed to be: at home.

He was upstairs in a big, spacy room which was perhaps the master bedroom in the multi-level family home in a suburban area in Ontario, Canada. From his reclining chair, where he slept, it seemed like he could see all of Canada: the land was expansive, unending, infinite like the sky, red barns with shiny roofs glistening here and there.

Although he could not tell the time, from his reclining chair, through the large bay window, which faced him like a big television screen, he could see the time: the clear morning sky; the red, orange, yellow, purple, pink evening sky; the twilight; the black night sky. He could see the seasons changing in their predictable and orderly manner, and perhaps, at night, he could even see the moon.

He had dementia: he could not tell the time; he could not recall the month; but nature gave him clues, as long as he could look out the window.

The master bedroom was the old man’s world.

His world was not simply four walls and a big bay window; he had Lewy body dementia. In the room, at any point in time, there were imaginary people, imaginary children playing, sometimes imaginary animals, sometimes just shadows. These imaginary things, he had said to the doctor, with a pleasant smile on his face, did not bother him – he knew they weren’t real.

The son’s story was different.

Sitting around the dining table, the son described no fantasy: sleepless nights, untouched meals, thrown objects, shouting, stubbornness, resistance, and, on the rare occasion, lashing out.

There were good days and bad days. Every day was a new day. It was unpredictable. The uncertainty of all of it was the worst part.

“My wife died from stage-four cancer. She died here at home. At least we knew what to expect. It’s like there was no light at the end of the tunnel, but at least we had an idea of where in the tunnel she was.

“This is so different. There is no tunnel. We are just in a dark room, trying different things.”

The grandson and granddaughter, who both looked as if they were in their twenties, joined in the conversation.

They were curious and attentive, and described the symptoms of Lewy body dementia in detail, like the textbook, only more dramatic. They filled in the gaps in their father’s story, recalling when Grandpa did this and that.

The medications, about a dozen of them – for sleep, anxiety, hallucinations, blood pressure, prostate, the heart – were neatly organised in a weekly pill sorter. From his phone, the son printed a copy of the medication record: a typed document with the name of each medication, the dose, when it was started, the reason it was prescribed, dose changes. They were experienced caregivers.

The old man was in the right place. There was no better place for this old man with dementia. The doctor knew this with 100 per cent certainty.

The doctor knew the alternative: homes that were called homes but were not really homes – they were institutions. He knew about the infamous Canadian nursing homes, also called long-term care homes – warehouses, as one Canadian journalist described them, made infamous by the covid19 pandemic.

He knew about the other extreme: the expensive private retirement home, which looked more like a cruise ship on land – the multi-level structure, the fine dining, fixed schedules, games, recreational activities, fancy menus, in-house theatre, spa, swimming pool – than an actual home. Whether it operated like a warehouse or cruise ship, a building in which old people were herded together was not a home.

But alas, they were all called homes – a misnomer. How misleading!

So that when the son said, “He needs to go in a home” it felt like a failure, a disappointment.

But who had disappointed whom? Who had failed? How did we get here?

Alas, the doctor did not know. All he knew was that it did not feel right.

Taureef Mohammed is a physician from TT working in Canada.

E-mail: taureef_im@hotmail.com