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My husband’s early-onset dementia means I have questions that can never be answered


A jigsaw puzzle with too many missing pieces

My husband's early-onset dementia means I have questions that can never be answered, Kim Galvez writes

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I live in the past of my husband. And here I am in full dismantling mode of the bookcases – his and mine. The grime on the shelves won't come off. The slender tomes on his side (poetry) sidling up to Argentine history and family – authors galore, and none that I have read.

But 'tis the time to dismantle and I bring down armloads, surprised how many I know of through marital osmosis. Names of people he interviewed, friends he loved and places that have gouged into his memory despite the dementia.… Dos Talas, where they summered, and where in earlier days Garcia Lorca and Ortega y Gasset gathered with other bohemian souls for intellectual recollection and wild fun. … How much did I know of my man that is now also blown to the wind? An inquiring mind questioning history, and hungrily reading Rilke, Kierkegaard and Andrei Tarkovsky in translation.

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Some of the books were taken from family libraries to keep a sense of closeness here in Toronto. They smell fusty.

Turning them over, I seek answers now that I can't have them.

In the eternal present of his spotless mind, he remarks on the clouds and the sun and for the 1,000th time how nice my coat is. In the car, I slip in a question about an ancient uncle or where something was or why it was, but his "forgetting" wipes the slate before he utters the answer.

There are letters – bundles of them – but who are the people and what were the issues that made them pour out their souls at such great length?

Of course you'll keep them?

Of course you won't keep them?

To keep in the basement till the damp gets to them, or to offer them to an Argentine friend without being able to explain what I am offering?

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There are photos – a lady riding side-saddle, babies in lacy white gowns, groups laughing on the beach, a solemn dog, some – no, many – formal gentlemen staring out at us from a cocktail party.

This was my husband. These were the bricks of his memory that started to show cracks. (He is now 70, but began showing symptoms of dementia in his mid-50s.) They say the short-term memory goes first while the long-term remains crystal clear. I assumed it would be like that for him and I'd be able to catch up and jigsaw that past into a picture. But it hasn't worked like that. He seems to remember neither and, now, even the beloved dog is referred to as the "canine" and I wait for the day when he won't recognize me either.

Winding back – from the emergency mental-health lockdown, to a well-equipped suburban hospital, to a "secure floor" downtown. A shocking escalation in decline. Within a month moving from being an absent-minded eccentric, to three mammoth departures complete with police hunts, without water or food or spending any money.

A new phase.

Further back, the psychiatrist brought in to comment on his state, said three things (hurriedly and in private): "This is past the middle state," "He needs 24-hour care," "He needs to be on an anti-psychotic."

Trying hard at home. Getting state-sponsored and kindly carers; installing locks on doors; keeping alert day and night.

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But in the end to no avail, and it led to the three hospital scenarios. Then a long-term bed came up in a better facility that needed to be seized before it disappeared.

So a signing of forms, from non-resuscitation (not what I wanted to see), to inoculations, to decisions if a pandemic broke out, to a colourful description of whom the patient is.

All handled very kindly and sensitively.

We arrived on the secure floor with its "escape" code. To one side my Argentine husband, subtle, musical and not on meds. To the other, grunters and whoopers, tuneless tappers and icy-boned bodies, their heads twisted up with open mouths.

Early-onset Alzheimer's. A generation that is not yet in the system and does not fit the pastel-coloured setting of the 80-plus-year-olds.

This had to be the place, but what to do?

As I left, he cried out, "Don't go, I'm alone. Why am I here?"

Yet, the next morning he was playing the guitar to 15 wheelchaired wrinklies. No trauma.

A yo-yo of dramatics and anti-climaxes.

Walking the corridors, the lady repeated "poop poop de doop" and tried to steal a wet kiss. Another one tried to barge into his room.

One minute, it's a tragedy to have him there, then he shows he is quite helpless.

Tomorrow, there is a meeting to discuss next steps and the need for a "behavioural support worker" to help him "settle in." What happens in behavioural support – apart from being locked in and drugged? Once you're in there, you don't come home.

Do I want him home? No.

Process. Reassurance from overarchingly helpful staff. It all helps.

How to detach? Friends say, "You have your own life to live."

But I'm at odds with the way we tidy people away. Do we learn caring by avoiding it? I rationalize that he is the child I never had. But rather than growing up, he is sliding down the beanpole.

Remembering the nursery rhyme Oranges and Lemons and the line, "Here comes a chopper to chop off your head." Armed with my power of attorney, I am jailer and chopper. I condemn him by word and signature.

It is not a time for sharing and pity. Time for – I try to remember the word and it doesn't come easily – "confession." Ah yes.

Mea culpa.

Kim Galvez lives in Toronto.

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