For the last three nights, I’ve spoken to my Mum before I’ve gone to sleep, just before she tries to settle into to a uncomfortable but temporary bed next to my stepdad in the room of the nursing home he now lives in.
Since his second big stroke, he’s required full time care. And now he’s gravely ill, with no prospect of recovery.
But really, he’d begun to disappear before all of this, and probably a even fair while before his dementia was officially diagnosed.
Like so many in this situation, the little signs or things Mum noticed about altered behaviour were often easily dismissed as ‘forgetfulness’ or fatigue. Or just ‘getting old’ sooner than we all thought.
She compensated for things, took up the slack and kept their lives going.
She continued to organise amazing travel adventures for them both, to ensure her own wanderlust and both their passion for knowledge and adventure were fulfilled.
But for anyone who has a partner or a parent with dementia, they know that the only certainty is that they can’t apply logical, rational explanation to the changes or cognitive decline they see.
Imagine your husband or wife slowly slipping away, or becoming aggressive, emotionally withdrawn, confused, lacking in empathy or tearful all the time without explanation.
Maybe their behaviour is variable: tasks accomplished today could be in disarray tomorrow, and then back to completed easily with frustration that there was every any doubt.
Empathy, concern, appropriate emotional responses disappear, only to come back sometimes.
This is what it can be like to share a home with someone whose dementia has yet to be diagnosed. Sometimes it’s only when we look back, we realize they’ve had cognitive decline for months or years.
Others might comment that “s/he seems fine to me..” and then so many just like my Mum are made to feel deeply ungrateful or intolerant for complaining about this sad, slow disappearance of their beloved.
A big hurdle for many is getting to the point of diagnosis. And trust me, this helped a lot. Although it was sad and frightening for Mum, it made some of the changes make sense.
And even though there are a plethora of services, both in the home and in aged care facilities, Mum discovered that they’re often very hard to decipher.
It’s not fun, it’s not heartwarming. It’s not a ‘beautiful journey’…quite the contrary.
My Mother has had tried her best to navigate this new territory.
She oscillated between kind, caring compassion, anger, guilt and her impatience and frustration over her husband’s disease. Her heart became heavy.
And now as she sits by his bedside, reading, playing classical music, telling him news of the day, and she’s in a strange holding pattern. Waiting.
The man she met and fell in love with, the kind and clever man she married and traveled with, he slowly faded away a while ago.
Sometimes she sees glimpses of recognition in his face: that characteristic raised eyebrow perhaps, or the eyes-squeezed shut laughter at his own bad jokes.
They keep her reminded of the The Great Marty:
the Marty who couldn’t make spaghetti but presided over hundreds complex trials in the law courts for decades; the Marty who stood (and even marched symbolically around a Parisian hotel room) when la Marseillaise played in honour of a futile boyhood dream of joining the French Foreign Legion; the Marty whose considered and calm reasoning was the yin to the yang of Mum’s inner ‘tree-hugging hippie’ and placard-carrying protester.
Their 20 year-old selves would been a highly improbable match but the 50 year olds they became formed a new, inspired, educated, joyous, tolerant and ultimately very, very happy couple.
I can’t imagine how difficult this has been for her, but I can only be there to support her and wait with her.